tag:blogger.com,1999:blog-27564669034075249742024-02-06T19:30:34.758-08:00babyracerour family's adventures with autism and eosinophilic esophagitisbabyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.comBlogger83125tag:blogger.com,1999:blog-2756466903407524974.post-60745271540342223012014-05-02T11:13:00.001-07:002014-05-02T11:13:49.421-07:00The Babyracer Blog Has MOVED!!!Last year I decided to move my blog over to our new family/music website <a href="http://jenandstew.com/">jenandstew.com</a> but totally forgot to write a lost farewell post to this blogger site. I apologize if you have checked in here to see what we are up to and just thought that I had completely stopped writing. That is not the case! Please pop on over to our new blog and website and check out what's been going on in the last year!<br />
<br />
Click on the link right <a href="http://jenandstew.com/?page_id=8">HERE</a>!<br />
<br />
Thank you for following the adventures of the Turrell/Anderson Clan!babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-24341086837059753742013-07-10T09:03:00.002-07:002013-07-10T09:03:45.120-07:00Our Trip to France Part 3! Finally!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieg9ESxQ9zvfOZFPS4D0PaNxaos4obKVu4yiQoX83OpmJ_2PVL9yeJ-xobxOJ6zytSseBOfqWU8WVQfZbgO1DZ_GsZG9rndb2-qh3-dhOfZX2S5T3tUxqw754f57W3ZaKCsARyw1-hykc/s1600/Family+Dinner.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieg9ESxQ9zvfOZFPS4D0PaNxaos4obKVu4yiQoX83OpmJ_2PVL9yeJ-xobxOJ6zytSseBOfqWU8WVQfZbgO1DZ_GsZG9rndb2-qh3-dhOfZX2S5T3tUxqw754f57W3ZaKCsARyw1-hykc/s320/Family+Dinner.jpg" width="240" /></a></div>
We finally made it to France after all of the planning and preparation and changes in plan. The whole point of the trip (besides finally getting back to France after many years) was to get together with Stew's whole family in one place at one time. This was Stew, his parents, both of his sisters, one of their husbands, and all eight Anderson cousins, including our kids, plus me and Karalyn as well. So we jointly rented an old converted farm house in the tiny Brittany town of Plougasnou. It was supposed to be about 5 and a half hours drive from Paris, but with stops for the kids and Carebear it took us closer to 7 hours. I was glad that we decided to take a room at the airport the day we got in so we had a chance to recover from the 18+ hours of airport and air travel before hopping in the car for another full day.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNP1AOKncfV9dTitNVtZ2JKLInQGu5z4EVkMa_6cGS7Y4ABI9sXDcfa4s6782t4lw528zINYo2zschkXoqBZCgXdyQ1QIM9DcLQ2zoT4IuhMNG2SnT8_ZNPG2YSY3hcnzQuNz-sVlQKQ8/s1600/this+way.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNP1AOKncfV9dTitNVtZ2JKLInQGu5z4EVkMa_6cGS7Y4ABI9sXDcfa4s6782t4lw528zINYo2zschkXoqBZCgXdyQ1QIM9DcLQ2zoT4IuhMNG2SnT8_ZNPG2YSY3hcnzQuNz-sVlQKQ8/s320/this+way.jpg" width="320" /></a></div>
I was also glad that we ended up with a much larger mini van than I thought I was reserving. It was more of a van than a mini van and easily had seating for 9 people. This meant that some of Stew's family could pile in with us when we went on day trips and there was still plenty of room for car seats and Carebear. Both kids totally loved driving around the lush French countryside. There were farms with animals everywhere. And we had no real set schedule on a daily basis.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPbtmQaY2M3Li4BbM5Dd3nzOwWoMKZxASbAe7hT9NkjWczbTCiJQFUdzB4xDThqManrSEx7BCNwRM4a9PAHX3diRxItb39rhhyphenhyphenON67ulD6Ol5k3IwUfo-izvaQJvhEysMu7mXoiQHcVQ8/s1600/Silly+Daddy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPbtmQaY2M3Li4BbM5Dd3nzOwWoMKZxASbAe7hT9NkjWczbTCiJQFUdzB4xDThqManrSEx7BCNwRM4a9PAHX3diRxItb39rhhyphenhyphenON67ulD6Ol5k3IwUfo-izvaQJvhEysMu7mXoiQHcVQ8/s320/Silly+Daddy.jpg" width="320" /></a></div>
I was really worried about the lack of school and therapy schedule because often long holiday weekends are the hardest time for the kids at home. They expect to get up and get ready and go to school or therapy and get upset when things don't happen the way they are supposed to, but in France that expectation was totally absent. Neither one seemed to miss the regular schedule at all. It took nearly the entire trip to get the kids onto the local time in terms of going to sleep and getting up in the morning. But I found a strange peace and satisfaction in our nocturnal time together when everyone else had gone to sleep. Though sometimes Karalyn traded off with me on staying up with Myffy. Myffy was always the last kid standing. And removed from our normal crazy work/school/therapy/swim lessons/gymnastics/etc. schedules, I even found time to read a whole printed book and half of another, just for pleasure, something I have not done in a very long time. Usually anything I want to 'read' has to be on audible.com or it doesn't get read.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiquTa1FnROBrGsHKHdsQVvF9kIxvE2pY3uFdIMJnXxHQyC3vQxwp3vM7Ny0u8kHjHbQ24S3USqwy1gneGpXea9_HkRwa0d-t0b4TI9AzxxKgAE-jBHwPGqXJNJEu8YPfI-WUCY1WUeark/s1600/Family+Portrait+France.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiquTa1FnROBrGsHKHdsQVvF9kIxvE2pY3uFdIMJnXxHQyC3vQxwp3vM7Ny0u8kHjHbQ24S3USqwy1gneGpXea9_HkRwa0d-t0b4TI9AzxxKgAE-jBHwPGqXJNJEu8YPfI-WUCY1WUeark/s320/Family+Portrait+France.jpg" width="320" /></a>The kids both did fantastic with their cousins, and aunties and uncle and grandparents. Lu even took to calling out 'Granddad!' to get David Anderson's attention and then would giggle when he turned to her. It was pretty cute. Myffy missed a few outings with the Anderson clan because of her difficulty with the time change- often everyone else was up and away by the time I managed to get Myffy up and dressed, but there was still plenty of great family hangout time.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN_BonQlLoOWgBH733BhmSqUngILjK4mYZ0zqyuDOOwRMMFUex3Hytk6L3qOucLiAfDXUYpbd5YYA9Pt1FamjFD0Olb7dAhD21CphfMDJXKKsAXCjk5jAWtH9VPa_Vqzp8glrDFjI8HBI/s1600/Oceanopolis+family.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN_BonQlLoOWgBH733BhmSqUngILjK4mYZ0zqyuDOOwRMMFUex3Hytk6L3qOucLiAfDXUYpbd5YYA9Pt1FamjFD0Olb7dAhD21CphfMDJXKKsAXCjk5jAWtH9VPa_Vqzp8glrDFjI8HBI/s320/Oceanopolis+family.jpg" width="240" /></a></div>
Oceanopolis in Brest was a big hit with the kids.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigacfZekn3l-PbNIbNhMX7TFwdTehZgxwo4OMlDYoyYyNAw_3iRiMWdAZANmcvzGCRcc-VtdSjbRw7Ok3-VRilRendcG6LK3RcxNJmXkELgOzr7hy0_TzaBcwOf9a2daPYpu3iQwOBx2E/s1600/Hammock.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigacfZekn3l-PbNIbNhMX7TFwdTehZgxwo4OMlDYoyYyNAw_3iRiMWdAZANmcvzGCRcc-VtdSjbRw7Ok3-VRilRendcG6LK3RcxNJmXkELgOzr7hy0_TzaBcwOf9a2daPYpu3iQwOBx2E/s320/Hammock.jpg" width="240" /></a></div>
As was the back yard of the Gite with it's farm animals, playground equipment and awesome hammock.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg98ttM7tsXi0DzzOUO4X9LpXe8ydPBPfIa9slNmhfgJ3zm_gfHmn5OyuDOx53fKY4j8XCF_5AAgt39syjepU_3q9GtC93YNA5QsK8EAVrfM2ZTlB2-eSbPypB7x7q0ciBOwnoDdPM9mek/s1600/Jen,+Stew+and+Lu+Rocky+Beach.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg98ttM7tsXi0DzzOUO4X9LpXe8ydPBPfIa9slNmhfgJ3zm_gfHmn5OyuDOx53fKY4j8XCF_5AAgt39syjepU_3q9GtC93YNA5QsK8EAVrfM2ZTlB2-eSbPypB7x7q0ciBOwnoDdPM9mek/s320/Jen,+Stew+and+Lu+Rocky+Beach.jpg" width="320" /></a></div>
But most of all, the kids loved the ocean, so we went down to one of several lovely little beaches most days when the weather permitted.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij1iUM5ddIr1Z-Ljv9K4jLGBudYv5eBLg7Rh5BtA5VW1LNC9DbRZvQfAki9rq3-mSXCGJDmeAJYjR6ft0XIqnfgtclaj3NVDLHj9ntOEe-uiLAMgMiS_nNAsG8dZ8f5g0xN9gfiSTX78Y/s1600/Myffy+Beach+Run.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij1iUM5ddIr1Z-Ljv9K4jLGBudYv5eBLg7Rh5BtA5VW1LNC9DbRZvQfAki9rq3-mSXCGJDmeAJYjR6ft0XIqnfgtclaj3NVDLHj9ntOEe-uiLAMgMiS_nNAsG8dZ8f5g0xN9gfiSTX78Y/s320/Myffy+Beach+Run.jpg" width="255" /></a></div>
It was a cold, often rain-spitting north Atlantic Ocean, but the kids wanted in no matter how pink all of our toes went. And we all fell in love with the rugged beauty of the place. All in all the trip was more than worth all of the difficulty and planning ahead of time. And now that we have done it once we are hoping to try to get in a bit more travel with the kids in the future.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-5360849031726025402013-05-25T16:09:00.000-07:002013-05-25T16:09:18.095-07:00Our Trip to France Part 2!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_QyxECDf6MY0GGSLLPtVRifCyOwYV9uYLJloOM2WsbH96gm-YgrzTDofB2_JZL_fc8nHDCglhV7U2cvPx_YubVCpDkj_i-pPDPsKXNLpddfxOpZvh9F07JmsmP8Cr1ZU66otUTNq0GRc/s1600/Boarding.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_QyxECDf6MY0GGSLLPtVRifCyOwYV9uYLJloOM2WsbH96gm-YgrzTDofB2_JZL_fc8nHDCglhV7U2cvPx_YubVCpDkj_i-pPDPsKXNLpddfxOpZvh9F07JmsmP8Cr1ZU66otUTNq0GRc/s200/Boarding.jpg" width="150" /></a></div>
After publishing Our Trip To France part 1 I realized that I left out several steps of prep that we did with the kids. These steps were mainly the practice flights from Phoenix to Flagstaff to give the kids a test run before trying to plop them onto an international long-haul flight. We did Lu's flight at the end of a week long session at SARRC, and Myffy's flight the day after her endoscopy to check for EE in Feb.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirMl4zg_DqBrhu6IUXs2-WJ611CvjWGl8TQl9vCbR1tWU2lamybcmflPBPvv651eId76eSkIZpY9YDl0N8o0zqnuN1I1d-9NRi_eBL-JeQz60idBZ3OGWw9e6f3QTYVrIIV6GQNyjXHQA/s1600/Security.jpg" imageanchor="1" style="clear: right; display: inline !important; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirMl4zg_DqBrhu6IUXs2-WJ611CvjWGl8TQl9vCbR1tWU2lamybcmflPBPvv651eId76eSkIZpY9YDl0N8o0zqnuN1I1d-9NRi_eBL-JeQz60idBZ3OGWw9e6f3QTYVrIIV6GQNyjXHQA/s200/Security.jpg" width="150" /></a>Madison went with us for Lu's flight and other than getting nervous going through the security line when we had to take Dahanna's back pack and leashes off, as well as all of our shoes, Lu did really well.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaHnwj02Ass0JJY1qfJAevJE9CFHTBZBynCFRc2qM2t6gFtDmaXHQwLNnofVtPYU9MVr_f1HXAIgmr-t5m9Owlt-iXadk0p8rjPEy5uqymkylIn33bEcMO6N7NdwVGXmCW_bfwsZaAFvE/s1600/Lu+Happy+Airplane.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaHnwj02Ass0JJY1qfJAevJE9CFHTBZBynCFRc2qM2t6gFtDmaXHQwLNnofVtPYU9MVr_f1HXAIgmr-t5m9Owlt-iXadk0p8rjPEy5uqymkylIn33bEcMO6N7NdwVGXmCW_bfwsZaAFvE/s200/Lu+Happy+Airplane.jpg" width="150" /></a></div>
When she got into the airplane she was really happy and kept saying, 'Airplane go up in the air!' As a pilot and the daughter of a pilot, I couldn't help feeling a little bit proud of how much she seemed to love to fly. Even though it was only a 45 minute flight, I couldn't help feeling encouraged and excited. For any other family considering taking their special needs kids on a long haul international flight, I would highly recommend doing a short practice flight first. It does add expense to the whole trip, but it really helped us to anticipate where problems were mostly likely to arise.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhibzKxvu9ssGPFBFNVFt_krmN-6luyMBwobLcDsCbZAVSERPS7xkBZgXTLlmvBfWEON7hyphenhyphenBmd-KeeNqafwdmp6pxacZej50QnJ_W5QzLAvQsHCIzLTaYxUeGqg8VqhEdb0SBjeQ3BT-lI/s1600/train+myff.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhibzKxvu9ssGPFBFNVFt_krmN-6luyMBwobLcDsCbZAVSERPS7xkBZgXTLlmvBfWEON7hyphenhyphenBmd-KeeNqafwdmp6pxacZej50QnJ_W5QzLAvQsHCIzLTaYxUeGqg8VqhEdb0SBjeQ3BT-lI/s200/train+myff.jpg" width="150" /></a></div>
For Myffy's practice flight I took her by myself and she had a much harder time with the lines and delays, so I wasn't able to get any pictures. My hands were more than full. Still I think that it was really good that we went through it once first both so she could learn to anticipate what would happen next on the long flight, and so I could be prepared for her reaction. It was after this that I decided to buy the big box of individually wrapped ear plugs to pass out to other passengers.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjCfmvgqhrVKthCD53AyeROoBrb26hSEOi7F-V8R5PiKJUiVvumaBANSZfIAdn_Lmrdq1AruUkQDFst8mjmRjTawyRLArT_2j-5HGalEFyGCJxCC0rsc3Av0hBuBCzbpxXeLydQp7RnZY/s1600/Train.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjCfmvgqhrVKthCD53AyeROoBrb26hSEOi7F-V8R5PiKJUiVvumaBANSZfIAdn_Lmrdq1AruUkQDFst8mjmRjTawyRLArT_2j-5HGalEFyGCJxCC0rsc3Av0hBuBCzbpxXeLydQp7RnZY/s200/Train.jpg" width="150" /></a></div>
I don't want to give the impression that Myffy struggled throughout the entire travel time. There where whole hours of her walking along and sitting and playing and being perfectly sweet and totally awesome. It was also encouraging to think back to when Lu was Myffy's age, how much trouble she had with fast, unexpected transitions and changes, and to see how far she has come. She just rolled with weird thing after weird thing on this trip and took so much in her stride. It helped us to remember that even in autism there are stages that kids go through and grow out of and that in another year or two international travel might very well be a breeze for Myffy too.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkBD6o-14pKuksYu9q4N5GRpvRp82niRvKUshwZswg2Az0Xy0uBEgaUEeAmRZqn4Rt_7Iy9LHrJ2l2RRFF4vv5AQQ_K1nu3Ci3GDSLwQ3x_0hUJwg1pqtvKZ3_9TwHqYxCvRzIfxaw860/s1600/short+flight.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkBD6o-14pKuksYu9q4N5GRpvRp82niRvKUshwZswg2Az0Xy0uBEgaUEeAmRZqn4Rt_7Iy9LHrJ2l2RRFF4vv5AQQ_K1nu3Ci3GDSLwQ3x_0hUJwg1pqtvKZ3_9TwHqYxCvRzIfxaw860/s200/short+flight.jpg" width="150" /></a></div>
I sure hope so, because we have already begun to discuss plans for our next overseas visit with the Anderson Clan! Stay tuned for part 3 of our trip to France when I finally talk about being in France!<br />
<br />
<br />
<br />babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1tag:blogger.com,1999:blog-2756466903407524974.post-25603271005061666102013-05-20T06:10:00.000-07:002013-05-20T06:10:48.637-07:006 Year Old Birthday Party!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWL6Unxg7JJAbtjCK745YDDQb4ZEs5b4WuGAqvPEsvduC5xjA4ae0azU7ITkx3dPhPG8oXdTFnbBOCCnJP6gzl4yHYWzVqJ8cU0w3NIGL0vSzdXnvhdIK5jqtx5Hx_X5cDrQGkPu7RkfA/s1600/Birthday+Cake.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWL6Unxg7JJAbtjCK745YDDQb4ZEs5b4WuGAqvPEsvduC5xjA4ae0azU7ITkx3dPhPG8oXdTFnbBOCCnJP6gzl4yHYWzVqJ8cU0w3NIGL0vSzdXnvhdIK5jqtx5Hx_X5cDrQGkPu7RkfA/s320/Birthday+Cake.jpg" width="240" /></a></div>
Saturday was Tallulah's best Birthday Party ever. For the first time we invited a lot of kids from school and out of the 20 invites we sent I think we had about 17 or 18 kids come. I kind of lost count with siblings and last minute rsvps. I actually had to run out and buy a few more things just before the party because I was afraid we would run out with so many more kids than we were planning on. For other Birthdays the most we have ever had is 4 or 5 other kids besides my own. And we have never had anyone drop their kids off with us before. That was a totally new experience. I was a little nervous because I didn't know most of these kids or their parents, but Madison, Lu's one-on-one school aide, told me that the kids who came were pretty much Lu's little gang at school, with some brothers and sisters along.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2xCkZUfn5DKqEtrQdpehyJgaphqdTYOXGRGo9jBUwXMU6MJc4XYlJaJPWZdhOCBp5ouR3eAfBet_i7yH7tn0OFNqxT00wvDWy5Zjb09Kl-0fYUQRNYKW99gFYUoelxajVOeDMH0vMvkE/s1600/feeding+pony.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2xCkZUfn5DKqEtrQdpehyJgaphqdTYOXGRGo9jBUwXMU6MJc4XYlJaJPWZdhOCBp5ouR3eAfBet_i7yH7tn0OFNqxT00wvDWy5Zjb09Kl-0fYUQRNYKW99gFYUoelxajVOeDMH0vMvkE/s320/feeding+pony.jpg" width="320" /></a></div>
It's hard to express how happy it makes me to know that she has a little gang at school who looks out for her and wants to hold her hand on the way from homeroom to art or recess or whatever and who want to sit all around her at circle and movie time. I was really impressed with all of these kids. They were all so considerate and patient and totally awesome. They formed themselves into a line for the pony rides, they abided by the limits we set on how many kids could get on the trampoline and one would get off when another one wanted to get on. But mostly, they were just so nice to my kids. Several times during the party I kind of started to tear up.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIEeTyxkwQSzx827KJEF_q4rDkGpN5z2h8KffoW5vYbIXyd8mWY1TREWEP9bmSdBu12KX-F3Nzzr12ryPeFFqj717xHJEaba0cBwhvyYU7RJnLxfYKxwDPMrQ9pwOxXikqxn2Zd535K28/s1600/Jumping.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIEeTyxkwQSzx827KJEF_q4rDkGpN5z2h8KffoW5vYbIXyd8mWY1TREWEP9bmSdBu12KX-F3Nzzr12ryPeFFqj717xHJEaba0cBwhvyYU7RJnLxfYKxwDPMrQ9pwOxXikqxn2Zd535K28/s320/Jumping.jpg" width="240" /></a></div>
Back when Lu was first diagnosed I remember talking to the psychologist who gave us the diagnosis about friendships and meaningful relationships and she told me that it is likely that those human interactions that mean so much to me could very well hold little to no meaning for her. That was one of the hardest ideas for me to grasp and I have always wanted to find ways to encourage friendships without going total psycho mom on someone else's kid insisting that they be best friends with my daughter.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWqVgYcR7fZqs3QKEXcQv7P2BtSkTDOfGSWAyqmdMuXNTDGbx5ocroOoOMulfrxlF1Gkk85QbLZMNHRV1dkTorM9NEx2TGQjstdr0fL1o2aio4idGxJr7y_3UL383sE6HjUBpH_RiJqRQ/s1600/Myffy+and+Halie.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWqVgYcR7fZqs3QKEXcQv7P2BtSkTDOfGSWAyqmdMuXNTDGbx5ocroOoOMulfrxlF1Gkk85QbLZMNHRV1dkTorM9NEx2TGQjstdr0fL1o2aio4idGxJr7y_3UL383sE6HjUBpH_RiJqRQ/s320/Myffy+and+Halie.jpg" width="240" /></a></div>
I try not to push this at all because I would hate for Lu to experience social rejection before getting a chance to experience real friendship. We all experience rejection at some point in our lives. I still remember early grade school snubs from when we moved several times within just a couple of years and I was the new kid over and over. My main difference was just that I came in during the middle of a school year when everyone else already had their friendships established and I didn't know anyone.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggHoa_5j2dkTqLarTUuzSqpUoz19rNueV6L4Z5-1o4BOQQ8hWS9UwV-x-KmsJDZPjfbkpUCbb_Ud4Etvcowcts2Wa2cdNziH93hCV6PrYEY_V29zxfp06Mh0EALhc3IlktS5zyP73KnB8/s1600/Birthday+Dog.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggHoa_5j2dkTqLarTUuzSqpUoz19rNueV6L4Z5-1o4BOQQ8hWS9UwV-x-KmsJDZPjfbkpUCbb_Ud4Etvcowcts2Wa2cdNziH93hCV6PrYEY_V29zxfp06Mh0EALhc3IlktS5zyP73KnB8/s320/Birthday+Dog.jpg" width="320" /></a></div>
For my kids the differences are greater, and the work of making friends, that much harder. It's nice to know that there are special kids out there who will go the extra mile to be friends with awesome and quirky kids like mine. I also think that both Dahanna and the school aides helped a lot at the start of the year to get kids interested in interacting with Lu. They have also taught these kids a lot about autism as I learned from a conversation with one very earnest little 6 year old who wanted to know why Tallulah's sister has autism too. But we are now at the end of the school year and it is great to see that there are kids who still genuinely want to be her friend.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXZElUkCdI3z9b-cH0iohmaAvnhrwsxlP6-pdwWXMEd-hs-LUXDLinw8c_TNHqZXmT5AWATNq998goxZCveYU9Y3HzzSwOp1UKHAa87H79V2wwBiFxVYgA47wH1_2LCGSHjDyy985CkVM/s1600/End+of+Party.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXZElUkCdI3z9b-cH0iohmaAvnhrwsxlP6-pdwWXMEd-hs-LUXDLinw8c_TNHqZXmT5AWATNq998goxZCveYU9Y3HzzSwOp1UKHAa87H79V2wwBiFxVYgA47wH1_2LCGSHjDyy985CkVM/s320/End+of+Party.jpg" width="240" /></a></div>
At the end of the day when we were putting the kids to bed I asked Lu if she had a good Birthday and she gave me the thumbs up and whispered, 'Good Birthday' with a sleepy smile. I didn't get a picture of that, but here is Myffy pegged out early in the hammock in the back yard. All in all, it was the best Birthday Party yet.babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-88188165939783736532013-05-13T22:13:00.002-07:002013-05-13T22:13:06.023-07:00Our Trip to France: Traveling Overseas with Autism, EE and a Service Dog. Part 1.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbMz-mqi5M_Trbb7cDaXDEeLRN52k0ptJd0afN7Atg_jLgUwM-abbKZ9MGKyBEOYvS5r7Vw3IOWd9vhvFwBbJUoApxLB92yP_9YDPWaaOObMDGWKI83UCPrYw6aH7I1HVNUV3-GkkmHKs/s1600/Lu+Beach+Smile.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbMz-mqi5M_Trbb7cDaXDEeLRN52k0ptJd0afN7Atg_jLgUwM-abbKZ9MGKyBEOYvS5r7Vw3IOWd9vhvFwBbJUoApxLB92yP_9YDPWaaOObMDGWKI83UCPrYw6aH7I1HVNUV3-GkkmHKs/s320/Lu+Beach+Smile.jpg" width="240" /></a></div>
Yes, we did it. We took the kids to France and made it back again. It wasn't easy, but it was totally worth it. Worth all of preparation and planning. All of the worry and stress about what could possibly go wrong. The kids, and all of us, had such a great time. Tallulah's face in this photo of her on the beach by the ocean says it all. She loves the ocean and she loves France. We all did. Heck I even started looking at real estate while I was there, imagining a world in which we could move to France, or have a second home there and spend two or three months of the year. Yes, it really was that great to be there.<br />
<br />
However, if anyone else ever wants to follow in our footsteps and take their special needs kids and a service dog overseas, I do have a few tips to pass on. First, do all of the paperwork for the dogs travel papers several months ahead of time even if they tell you that you have to have them done 5 days before travel. You will have to do it again 5 days before travel, but at least you will find out if there are any unforeseen glitches. We had a very big unforeseen glitch. When we looked over the list of all of the requirements, we met them all, rabies, check, microchip, check, certification paperwork, check, etc.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwC273nxZCjoccdNxcty2zam44qG9tST2qh9mngMQj2RtLrIA58_SfbOeMzwBZzVC1EUM70W5Y5kIpCH1Stib-rK8HFNyBISjjsFpvfSPsCtKiBY7PS9z1cW_euF7g3Oggb2EvqukEdv0/s1600/Princess+Dahanna.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwC273nxZCjoccdNxcty2zam44qG9tST2qh9mngMQj2RtLrIA58_SfbOeMzwBZzVC1EUM70W5Y5kIpCH1Stib-rK8HFNyBISjjsFpvfSPsCtKiBY7PS9z1cW_euF7g3Oggb2EvqukEdv0/s320/Princess+Dahanna.jpg" width="320" /></a></div>
The odd little issue that became a game changer for us was that because Dahanna was microchipped after her 2nd rabies vaccination, the USDA refused to certify the vaccination. As if it could have been some other dog who was vaccinated because she did not have a microchip at that time. We didn't find this out until we went in for the 5 days before travel paperwork. In a panic I told the vet to just vaccinate her again, thinking that would make everything ok, but after they gave her the shot I found out that now she was not allowed to travel for 21 days. WHAT!?!?! I did a lot of crying and shouting over the phone, trying to explain that we'd been planning this for months and no one ever warned us that this was even a vague possibility, but it was a done deal. There was no way we could take her.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWmyJC9px9TidHoIn2r95sfqZQOONIxhU-VVyTsOl535N-dWpDfKg2D18G3pjN6docw3JSWUDCpqjX1qbHc4gSmHxR3d0bKDO0sLdo9yugn_tO3UOSSU7JfD3uSj4Ji3uvRa2NQ04oyI/s1600/Carebear.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWmyJC9px9TidHoIn2r95sfqZQOONIxhU-VVyTsOl535N-dWpDfKg2D18G3pjN6docw3JSWUDCpqjX1qbHc4gSmHxR3d0bKDO0sLdo9yugn_tO3UOSSU7JfD3uSj4Ji3uvRa2NQ04oyI/s320/Carebear.jpg" width="213" /></a></div>
Brian from Arizona Goldens came up with our solution which was to take Carebear with us instead. We had a few days to work on getting the kids used to this idea, and in the meantime we sent in all of the paperwork for her. Luckily her shots and microchip had been done in the right order. I did get an incredulous comment from the USDA agent, "What do you mean, you have a spare service dog?" Yes, we are one of the few families in the country to have not one, but two service dogs. Because Lu's needs are greatest we decided to spend the last few days before travel focused on Lu and Carebear working together. I was worried about how the kids would react, Lu to being attached to the higher energy Carebear who she often shies aways from when we are at home, and Myffy to having Lu hold the leash for her dog. I was amazed. Both the kids and Carebear totally surpassed my expectations and took it all in their stride.<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPYqt-qSyR4s2UsdDiUfgdtLHNlwzZwi3vu1yuWFsPyUv6_S14fwz0J-nKzakSOWhaIAW6vE4aoiczi437rStUHRJFoSwFES31c9tkAqe8BmPZi3PJWKNpjSz0o_wHQQE4DFrtsD3x1-0/s1600/plane+nap.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPYqt-qSyR4s2UsdDiUfgdtLHNlwzZwi3vu1yuWFsPyUv6_S14fwz0J-nKzakSOWhaIAW6vE4aoiczi437rStUHRJFoSwFES31c9tkAqe8BmPZi3PJWKNpjSz0o_wHQQE4DFrtsD3x1-0/s320/plane+nap.jpg" width="240" /></a></div>
One of the issues with traveling with a dog on such a long haul flight is the fact that there is no where in the plane for a dog to discretely and hygienically relieve itself. Because the flight to London was nearly 10 hours, plus getting to the airport two hours early for an international flight, plus the two hour lay over and the hour and a half flight to Paris, in all Carebear would have roughly 16 hours inside of terminals and airplanes. Because we weren't doing customs in the UK we were told that there was no way that we could leave the international terminal to take her outside. The solution: doggie diapers. It was a good plan but the truth is that it was such an odd situation for her that she just held it instead. Boy was she glad to see some grass when we got to Paris!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi2YhTLgYlSXx2t-f2iopAdKjdJx350VJENehNUWW1NpxVX9mUs3bMBy6IWoRwoKgS0gkvUbNgtsCmMtiVNOGmMrf0OxFJTLrF5EwOd22QQN4WyDjWhk-JBeqrVxQVPaAI-zlxRNLvWs4/s1600/Myffy+plane+toys.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi2YhTLgYlSXx2t-f2iopAdKjdJx350VJENehNUWW1NpxVX9mUs3bMBy6IWoRwoKgS0gkvUbNgtsCmMtiVNOGmMrf0OxFJTLrF5EwOd22QQN4WyDjWhk-JBeqrVxQVPaAI-zlxRNLvWs4/s320/Myffy+plane+toys.jpg" width="240" /></a></div>
As far as the kids in the airports and the planes, I was actually pretty shocked by how calm and collected Tallulah was through the whole ordeal. Because we were carrying all of the feeding tube equipment, powdered food in cans and medications in bottles, as well as laptops, ipads, iphones and sundry electronics, our luggage got searched, scanned, swabbed, opened and pretty much everything short of making us drink Lu's migraine meds. All of this took a very long time, which wouldn't have been too bad if Myffy had not been really really upset from the moment we hit the lines for security. Usually if Myffy screams Lu throws her hands up over her ears and wails in torment. For some reason in the airport it didn't seem to bother her much at all. Maybe it was all of the other things going on to distract her from the sound. I really can't say. But she was calm and collected and kept hold of her leash and only got upset at security in London when for some reason they picked her out for a full body pat down and she didn't want anyone to touch her belly near the site of the G-tube. I was really upset at this because Karalyn, who went with us on the trip, went through the metal detectors with Lu first and as she was putting Carebear's collar and leash back on while body blocking Lu from running forward a lady came up and started patty Lu down without asking or explaining or anything. I was on the other side of the metal detector holding a screaming and thrashing Myffy, trying to shout at them to stop and let me through. Luckily Karalyn handled the situation well, explaining Lu's autism and the feeding tube and after touching her ankles again they let her go and finally let me get through to them.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8XI1d42hj5THIw5gPoO7UEbm4XCCWMFewCjJr9mKMtm2ysCWPSJ0nNq3ZgM8ggzgSb-VE4sR3hmRLiJeMqBj9K6ZcCJlmJ9QeLgD_F3DnusZQFQj-mK2fWsV6eY1iHO83vJJwLISa7JU/s1600/Plane+feed.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8XI1d42hj5THIw5gPoO7UEbm4XCCWMFewCjJr9mKMtm2ysCWPSJ0nNq3ZgM8ggzgSb-VE4sR3hmRLiJeMqBj9K6ZcCJlmJ9QeLgD_F3DnusZQFQj-mK2fWsV6eY1iHO83vJJwLISa7JU/s320/Plane+feed.jpg" width="320" /></a><br />
On the plane itself once again Lu did great. She settled in with her ipad and was perfectly happy to do her feed. British Airways was great to us in every way. The staff were fascinated by Carebear and truly impressed with her stellar behavior. Especially when they saw us putting the diaper on her! Myffy had a bit of a harder time than anyone else and I was so glad that I went to that industrial supply store to buy a large box of individually wrapped ear plugs so we had them on hand to pass out to the nearby passengers, along with a card explaining what autism is. It saved a bit of time trying to explain what was going on while Myffy was screaming, and everyone around us was really awesome and supportive about it all. Myffy cried herself to sleep before we were out of Arizona, and slept through nearly all of the entire night flight to London. Lu did her feed and had her meds and slept as well.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhexLA3BFRYMqf8BU8PY5COkRJcSjzx4c488kdHpub9GlWV9aEkNsO9lB7xTcllDflAY4TKTk5ScAIwhX_s5kmOH8lkmNwBodpAICEnA_6nDmAGLRvujIM9oeA_VpO9mwzDTYiSa1ZXdD4/s1600/Luggage+Weight.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhexLA3BFRYMqf8BU8PY5COkRJcSjzx4c488kdHpub9GlWV9aEkNsO9lB7xTcllDflAY4TKTk5ScAIwhX_s5kmOH8lkmNwBodpAICEnA_6nDmAGLRvujIM9oeA_VpO9mwzDTYiSa1ZXdD4/s200/Luggage+Weight.jpg" width="200" /></a></div>
All along we were warned that the customs people in Paris would be all over us the moment we got out of the plane, before we even entered the airport and would want to go over every detail of the paperwork for Carebear. And someone did meet us as we exited the plane, a woman in a red jacket who said to follow her. As we approached four police men she said something in French and one of the officers made a gesture with his hand and a pfwt sound with his mouth which I interpreted to mean he didn't really care. At the end of the hall the woman went through a door to the left and waved us on down the hall to the right. It lead to passport control and then on to the baggage claim. I kept waiting for someone to ask for all of this paperwork, but the customs counter was empty and closed. We walked through the door marked Sortie with everyone else from our flight and no one ever asked to see anything. Isn't that just always the way? You do everything you possibly can to be totally prepared, and then you realize you could have not prepared at all. Of course if we hadn't been prepared, I'm sure customs would have been all over us.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhktWz7d__FdORWczxvN43NcYXcTW9Rszdbn2NKxJu6fiyy60nOAYJSGRh9WTIlv9nhiZ4nHmbI0fHNCu33h_XuxnDeunmN4z3E3F2U9Ee4dRFtthXo6ZJmEipglIHgJW2hqlLZncfzFYE/s1600/this+way.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhktWz7d__FdORWczxvN43NcYXcTW9Rszdbn2NKxJu6fiyy60nOAYJSGRh9WTIlv9nhiZ4nHmbI0fHNCu33h_XuxnDeunmN4z3E3F2U9Ee4dRFtthXo6ZJmEipglIHgJW2hqlLZncfzFYE/s320/this+way.jpg" width="320" /></a></div>
The next day we drove to Plougasnou. It was a long drive through the french coutryside, which was lovely and luscious, but as we neared the coast of Brittany, I started to fall in love. Being California born and Arizona raised, I've never spent much time on the Atlantic Coast. It is definitely somewhere I want to get to know better. Lu loved the French countryside too. Just driving around seemed to make her so happy. This is Karalyn the graduate student pictured here in the van with Lu. She came along with us on the trip and was an enormous help with everything. Thanks Karalyn!<br />
<br />
I'll write more about our time in France in a few days so stay tuned for Part 2 or Our Trip to France!babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com5tag:blogger.com,1999:blog-2756466903407524974.post-15409349368120969422013-02-24T08:26:00.000-08:002013-02-24T08:26:35.731-08:00Lu's AC Breakthrough<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgctZ2TYOUVHdIf2O1lRg69HUh8cz-XQBelswJDFrXYQcNvmp_eoOZfKEC4cRAqCmR28PsaI_ZZscImKPgTDhl9O3VmoqQAgRAdN0i0PlMjzsONtI94DOc0T1_pMN6DY55o-yd0VddVSHc/s1600/images.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgctZ2TYOUVHdIf2O1lRg69HUh8cz-XQBelswJDFrXYQcNvmp_eoOZfKEC4cRAqCmR28PsaI_ZZscImKPgTDhl9O3VmoqQAgRAdN0i0PlMjzsONtI94DOc0T1_pMN6DY55o-yd0VddVSHc/s200/images.jpeg" width="200" /></a></div>
Ever since reading the fantastic book <a href="http://www.amazon.com/Brains-Trains-Living-Autism-ebook/dp/B00548AL98">"Brains, Trains and Video Games"</a> by Alicia Hart in 2011, which told the story of her son Ewan who has both Autism and EE like Lu, I have wanted to find a way that an Agumented Communication Device could help Lu to communicate with us. I talked to her SLP (Speech Language Pathologist) and she brought us a Dynavox talk box which at that time was a large and heavy box with lots of icons on it that speak words when pressed. Lu was totally unimpressed. By that time she was already a wiz on her iPad and could get it to do far more than I knew how to do on it. She loved watching vintage Barbie commercials in German on YouTube and even figured out exactly what to do to download new apps. The talk box was big and clunky and looked totally outdated next to her shiny new slick touch screen ipad. I downloaded a couple of really expensive communication apps like One Voice, Proloquo2go, and My Talk, but none of them really interested her and she was so quick on the draw that she could click the home button and get out of those programs before we were able to show her much of what the programs could do. As with most things for Lu it was a matter of motivation and attention and after a few months of fruitless effort which included us taking actual photos of a lot of real things that Lu is interested in in real life, but couldn't care less about on her iPad, I gave it a rest.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaC2kdXvn8zrmwyP2T-QaosTy_QB02KpKge_LVfKa1jVPg0QqfHSD84kaFoieUZZmSpeWSPnnEBfUhlO1UVK0IUy8cv4bO3nj5Xrhb-Ne2NFkPkIQ6c4SSfH2LZlgwAuR7Be10kMjrfJE/s1600/Unknown.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="182" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaC2kdXvn8zrmwyP2T-QaosTy_QB02KpKge_LVfKa1jVPg0QqfHSD84kaFoieUZZmSpeWSPnnEBfUhlO1UVK0IUy8cv4bO3nj5Xrhb-Ne2NFkPkIQ6c4SSfH2LZlgwAuR7Be10kMjrfJE/s200/Unknown.jpeg" width="200" /></a></div>
At the end of Lu's preschool year, before she moved on to Kindergarden we had an IEP at which the school's SLP mentioned that we could request an AC evaluation. I jumped at the chance. An opportunity to get more information about what might possibly help Lu along is always gladly accepted by me. The team who evaluated her recommended a Spring Board device with the same kind of super basic icons as the old one, but on a smaller and lighter device. Worth a try I thought, so we borrowed one from the NAU Assistive Technology Department for a few months, but it was met with the same distain from Lu as before.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXkeESZKGxAsHINlf2N51EK799So0zAV5vtGau_P4yqsXNkVSIE3M5egv_zK6dFLxHXCxAtTLjakd67yYAMf8hzU7HFdjmT7lrgOFHs7Wof34tEXvSGjrvxI9ShbyvRnCKhMfviKnUc0A/s1600/lamp-app-ipad-2.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="153" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXkeESZKGxAsHINlf2N51EK799So0zAV5vtGau_P4yqsXNkVSIE3M5egv_zK6dFLxHXCxAtTLjakd67yYAMf8hzU7HFdjmT7lrgOFHs7Wof34tEXvSGjrvxI9ShbyvRnCKhMfviKnUc0A/s200/lamp-app-ipad-2.png" width="200" /></a></div>
This year a LAMP app was finally released for iPad. This time I was excited. Lu loves her iPad. Maybe on the iPad this program would seem more exciting. We again borrowed an iPad from the NAU AT department that was set up to only have the LAMP program on it and nothing else so she would not be tempted to navigate away from the program to find other more interesting things to look at. We even programmed in an icon for her to request her other fun ipad. It worked slightly better, but just about the only thing she ever requested with it was her ipad, which she could request verbally if she wanted to. So after awhile of us trying and the SLP trying, we eventually abandonded it again.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEzx5Ns-JbLp-YPdDdGKvci6DcLdruibofZ22aqJmHQctDF4_Vc5C5ISmR92TNpGKqEAK4Ju_6k9Qh9wgbtBPKhI9iYAgbdCjtIdFKsUHk3BmItKi5crkeZ2IgMCV8UIvJZrKHLmEavb0/s1600/ipad+mini.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEzx5Ns-JbLp-YPdDdGKvci6DcLdruibofZ22aqJmHQctDF4_Vc5C5ISmR92TNpGKqEAK4Ju_6k9Qh9wgbtBPKhI9iYAgbdCjtIdFKsUHk3BmItKi5crkeZ2IgMCV8UIvJZrKHLmEavb0/s320/ipad+mini.jpg" width="320" /></a></div>
And then came the ipad mini. I don't know exactly what it is about the mini, but Lu absolutely loves it. Once again we put nothing but the LAMP program on the mini so the only thing she can do with it is use it as a communication device, and finally for some reason, this time it clicked. Maybe she likes the size and the shape. Maybe it's the way the icons look smaller on the screen. Whatever it is she started exploring it. First she learned where the animals are on it, the pets, the farm animals, the zoo animals, and then she started checking out the toys and the food. She asked for hot chocolate. Not chocolate milk which she has asked for before, but hot chocolate which she had only had a few times. We discovered that she loves hot chocolate but didn't really know how to ask for it. Then she asked for grapes. She has never asked for grapes before. I thought maybe she was just poking buttons to see what they would do, but she really seemed to want grapes. She also asked for tacos and hotdogs which she had never eaten before and seemed disappointed in once she got the real thing, but at least she was trying and asking for new novel things. And then the most amazing break through of all. Stew came in from work one day, kind of dirty and a couple of days unshaven. Lu was doing her feed on the sofa and he knelt down to say hello and he asked her for a kiss. Lu's version of a kiss is to either put out the back of her hand for us to kiss or to lean her head forward to allow us to kiss her on the forehead. She let Stew kiss her hand this time and then looked down at her ipad mini where she found the body parts section, and then pressed on 'beard' then she went back to the home button and found 'no'. She made the box say 'Beard no' and then repeated it while putting her hand on Stew's face. She didn't like his stubly beard. This was something that she has never had any way to express. How long has she not liked it when he tried to kiss her with an unshaven face? Possibly always, but she could never tell us before. Stew and I looked at each other amazed, then he ran to the bathroom and had a quick shave. When he came back smooth-faced with a few cuts here and there he knelt down again to show Lu. She put her hand on his face and smiled. He said 'no beard'. She said 'no beard'. And I think I was pretty close to bawling my eyes out. Since then she has been saying all kinds of things to us with the ipad. Some of it makes sense, some of it doesn't. She is still exploring and playing with a lot of it. But another great moment was once when she touched the icons for lion, then tiger, then bear. She hit the talk button to make it say 'lion tiger bear' and then looked right at me and followed it up with 'Oh My!'. I knew exactly what she wanted then. She wanted to watch The Wizard of Oz.<br />
<br />
That one little experience of Lu figuring out how to ask me to watch The Wizard of Oz made me marvel and the thought and effort she has to put into something that is so thoughtless and automatic for most of us. And I think that it really goes to show that a lack of speech is never indicative of a lack of thought. Lu has to put so much thought into how to help us understand what it is she is trying to tell us.<br />
<br />
Here is a little video of Lu using her iPad Mini to let me know that she wants Goldfish Crackers and Pizza! Unfortunately I have yet to find a decent tasting wheat and dairy free Goldfish Cracker substitute. If any of you other EE moms out there have found some please write and let me know. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<span id="goog_1940308180"></span><span id="goog_1940308181"></span><br /></div>
<br />
<br />
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dw1M3b_IoTjzQUQSnPM_ClD5Zk1WdHq6_ZnalSdjqXb9UKdWm5c7uMy56dOfuuyVsb3mZclnfVh-V3AH_ptJQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br />
<br />
<br />
<br />babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1tag:blogger.com,1999:blog-2756466903407524974.post-58025055144437103422013-02-02T10:15:00.000-08:002013-02-02T10:15:33.146-08:00Some Progress. Finally.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRTNU4QgnjwtYwhyXhse-_so1kCaZqbKp8beL6UPKZvnaqyGJNc-hUsmujJR2CEuFX3N-V6rjO1FSRsamXaj_hGzb1xYPkfk0iisz88-FMPws-uxzeIhXTERADTOYmH2zqVNIyuu6GdVo/s1600/myff.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRTNU4QgnjwtYwhyXhse-_so1kCaZqbKp8beL6UPKZvnaqyGJNc-hUsmujJR2CEuFX3N-V6rjO1FSRsamXaj_hGzb1xYPkfk0iisz88-FMPws-uxzeIhXTERADTOYmH2zqVNIyuu6GdVo/s320/myff.jpg" width="239" /></a></div>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;">In my last post I listed some of the many medical things going on with the kids these days and how much we were hoping to have some really answers soon. And finally it seems that a few answers are forthcoming. Myffy saw the ENT who has put her on a course of mild topical steroid treatment for her adenoids delivered by nasal spray which he said we would know was working if her snoring decreased and her sleep improved. Almost immediately we noticed improvement! The past several nights have been some of the best sleep Myffy has had in ages! </span><br />
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span><br />
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtR5L9eHOvoAeJVoh6ChTh_kZIegLJ19WeW9v-RTsXliU5xcotsdRTAMyQhuWg7dw2yqF9ySkRu0JxFW2QjGpCHaKwEVJtl83MOt3xaKHvBEkT0dsBeScczplGJcvAjiA1k3F0figrTV0/s1600/Lu+Ice+Cream.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtR5L9eHOvoAeJVoh6ChTh_kZIegLJ19WeW9v-RTsXliU5xcotsdRTAMyQhuWg7dw2yqF9ySkRu0JxFW2QjGpCHaKwEVJtl83MOt3xaKHvBEkT0dsBeScczplGJcvAjiA1k3F0figrTV0/s320/Lu+Ice+Cream.jpg" width="239" /></a></div>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;">The past several nights have also been the start of Lu's trial of a migraine prophylactic medication that has a strong sedative side effect. And she has been sleeping better once she gets to sleep. When I have asked her if she has ow and touched my head and then pointed to her head, instead of touching her own head and saying ow the way she usually does, she looked right in my eyes and said no! The first time we gave her the new med we thought she was having an anti-sedative reaction to it the way she did when the dentist tried to give her valium in order to work on her teeth. It seemed like she was on speed or something. Totally manic, jumping, screaming, laughing uncontrollably. Not that she doesn't have those moods on her own without any medication at all, but the fact that every night we've given it to her she immediately has this manic half hour to hour and a half or so and then very suddenly dropped into sleep like dropping a stone, makes it seem connected to the medication. The first night I had stepped out of the bedroom to let Dahanna outside and then brought her back in and I heard Lu call out "Mamma!" By the time I got back into the bedroom and climbed up into bed next to her she was so soundly asleep she didn't even stir as I covered her and moved her ipad out from under her arm. The second night was similar though that night she got up after doing her feed and was manic for quite awhile before I managed to coax her onto the sofa to watch Tinkerbell 'The Secret of the Wings' with me and cuddle until she was just on the edge of sleep, then I carried her into her own bed and snuggled until she was out which took about 2.5 seconds.</span><br />
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoJHuMCtvcgMV0HLOTAj9E46Z6ichnQlD7J7zUoVwv2CuUciWkDDwI8ZwlqcA6xUJnjJxqQETzSydP0kNSu1SN3LVRJZ2j1WuaqdUCYoYnQUsxEILcDeGFcFnfeYIAn_yOSeuWoxHeklY/s1600/drawing.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoJHuMCtvcgMV0HLOTAj9E46Z6ichnQlD7J7zUoVwv2CuUciWkDDwI8ZwlqcA6xUJnjJxqQETzSydP0kNSu1SN3LVRJZ2j1WuaqdUCYoYnQUsxEILcDeGFcFnfeYIAn_yOSeuWoxHeklY/s320/drawing.jpg" width="239" /></a></div>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;">Lu's glasses also seem to be helping with everything quite a lot. The fact that she really wants to wear them, keeps them on all day and only wants to take them off to go to sleep leads me to believe that they are helping her see better. And all of us have noticed that she looks at things for longer periods of time where before it seemed like her eyes darted from one thing to another pretty quickly. And her coloring and drawing have suddenly taken a dramatic turn towards precision and figurative representation. </span><br />
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqgog4Ad-TpRrYZ7lRb3k0sZR5TF_K1ETz5-pEzPtaRtk6pa5kwtXK144EN06SUUoIx7JppCQCgYGSNrmeDgwRDgNV4qAJIsxLFvI504K8F6YV12GfGGP4qtMRb9zHXkkwlCHdyAVmTH8/s1600/lu+horse.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqgog4Ad-TpRrYZ7lRb3k0sZR5TF_K1ETz5-pEzPtaRtk6pa5kwtXK144EN06SUUoIx7JppCQCgYGSNrmeDgwRDgNV4qAJIsxLFvI504K8F6YV12GfGGP4qtMRb9zHXkkwlCHdyAVmTH8/s320/lu+horse.jpg" width="320" /></a></div>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;">The other day she drew this drawing at school and when Madison, her school aide asked her what it was Tallulah told her that the main figure was a horse and that the drawing in the upper right area was eyes and that the small figure in the lower right was Dahanna. In the past she has often asked us to draw things for her and then colored them in and she always loves coloring in coloring books and stuff like that, but she has never completely free hand come up with a figurative representation this way. It is all very very encouraging. </span><br />
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;">Now we just need to get through Myffy's endoscopy and biopsy to check for EE in a couple of weeks, get the results and act accordingly, and then I will hopefully finally feel like we are on top of the kids' medical concerns again. Whew.</span><br />
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>
<span class="Apple-style-span" style="color: #333333; font-family: helvetica, sans-serif; font-size: 16px; line-height: 25px;"><br /></span>babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com3tag:blogger.com,1999:blog-2756466903407524974.post-55561050565129899962013-01-08T11:45:00.000-08:002013-01-08T11:45:19.422-08:00One procedure leads to another<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDTRF_eSax4ouBu5W_tSYZWixY9L7zjE2IVp5Cdpt9P4eUCP_EfCToWgXDtoCdWEWIVrSGmH9CpacxsmtzjFkbxogbSQJyizfGhBHN8DXG2Yn2ykSGe0wtRaIsN5JaYCLLewKrI0oPPbc/s1600/Lu+snow.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDTRF_eSax4ouBu5W_tSYZWixY9L7zjE2IVp5Cdpt9P4eUCP_EfCToWgXDtoCdWEWIVrSGmH9CpacxsmtzjFkbxogbSQJyizfGhBHN8DXG2Yn2ykSGe0wtRaIsN5JaYCLLewKrI0oPPbc/s200/Lu+snow.jpg" width="149" /></a></div>
The past few months have been fun for the snow and the holidays and all, but in the midst of it we have been busily racing down rabbit holes trying to solve the all of the kids' medical mysteries.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_D9ByJIzagGn6tEv09oEoiyUR6DxrTCXtAA1erzoiJP7cJGIPyaZ0M1ZSM6_qDaMZPuRbbSIDoNKEua7_Z_2-20rs3lKBZUVVEAnuo6br6ZTRgdXbNRZtS-NfsWq06-0q4RZhIprbPEg/s1600/LandD+in+snow.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_D9ByJIzagGn6tEv09oEoiyUR6DxrTCXtAA1erzoiJP7cJGIPyaZ0M1ZSM6_qDaMZPuRbbSIDoNKEua7_Z_2-20rs3lKBZUVVEAnuo6br6ZTRgdXbNRZtS-NfsWq06-0q4RZhIprbPEg/s200/LandD+in+snow.jpg" width="149" /></a></div>
The sleep study in November gave us a diagnosis of obstructive sleep apnea for Myffy, which wasn't too much of a surprise. My sweet little 24 pound elfling sounds like an enormous old man when she sleeps, snoring long and deep with scary halting breaths that keep me awake worrying that she has suddenly stopped breathing. I've always blamed that horrible bout of RVS she had when she was only two months old that kept her in the hospital for a week and required her to take an oxygen tank home for sleeping at night. But now they think that it might be the adenoids or the tonsils. I really hope it is the adenoids or tonsils because either of those would be super easy to fix. Just a small surgery, a day in the hospital, something plenty of kids have done, and presto! Her obstructive sleep apnea would be no more! Fingers crossed that's all it is. Especially now that Myffy herself has been scheduled for an endoscopy by the GI doctor because her 1 pound of weight gain in the past 18 months is worrying to us all. Luckily she was a super hefty baby so this year and a half of stagnant weight leaves her still within normal weight and height for her age, even if she is now on the low side.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjootRIK2G3zBomUWd3Hf5qQ5I56NZXe9KPT_r9hBTIEyox1FcW9Gzl1JHtrZn73YRw-ZG8yq0QvdVlE9PkB3LXclZ3QDSsVGH-YdveCCYFnl_f4EBAs4aCKO3W6BkEo_eXiclqZFIGvqE/s1600/Snowman.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjootRIK2G3zBomUWd3Hf5qQ5I56NZXe9KPT_r9hBTIEyox1FcW9Gzl1JHtrZn73YRw-ZG8yq0QvdVlE9PkB3LXclZ3QDSsVGH-YdveCCYFnl_f4EBAs4aCKO3W6BkEo_eXiclqZFIGvqE/s200/Snowman.jpg" width="156" /></a></div>
The major concern is that she may also have EE (like autism there is a very high sibling incidence) however because we have all been on a restricted diet for many many months, she may be having a subdued reaction which is harder to detect than Lu's original projectile vomiting symptom. Mainly Myffy makes strange throat noises while she sleeps, labored swallowing in between the snoring, which could be the sleep apnea, or GERD, or minor reflux, or EE. So for the moment we have been instructed to let Myffy have every allergen she can get her hands on so that we can get some reliable results for the endoscopy next month. Access to some real dairy ice cream and wheat based breads and pizza crusts might put a few pounds on her as well. Fingers crossed she will check out ok. The thought of putting her on Elecare Jr is pretty disheartening. If she does check out ok I can't help but think that sleeping better will help her appetite and all other areas of life as well.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF0H1IFolra7xTr-4-YoC7JfghyphenhyphennwZFOnuCY_epAdmy71ouvuqvSiN1Yld1Ci5sVwmFBk6QTdRJex1-FmN7u8a0IsOvfm7iJO81kUzN_UH4zLa0fyPoQEN-AGT1SwxfT6k0c9sekgjDR8/s1600/painting+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF0H1IFolra7xTr-4-YoC7JfghyphenhyphennwZFOnuCY_epAdmy71ouvuqvSiN1Yld1Ci5sVwmFBk6QTdRJex1-FmN7u8a0IsOvfm7iJO81kUzN_UH4zLa0fyPoQEN-AGT1SwxfT6k0c9sekgjDR8/s200/painting+2.jpg" width="149" /></a></div>
The surprising thing about the sleep study was that nothing at all showed up for Lu. No abnormal results. No skipped sleep phases. No low oxygen levels. Nothing. Granted they weren't able to quite get all of the gear hooked up to her, but I was really hoping for something, nothing awful, just something easy, something that could be treated and fixed. Instead we have nothing. No results from that, still nothing from the unsuccessful eye exams, no explanation for the headaches or sleeplessness. We discussed with the doctor trying to do a sedated eye exam and sinus x-rays, but in the end we all concluded that if she needs to be sedated again we might as well go for the MRI which will show us the most. So last week we did the MRI here at the Medical Center in Flagstaff and today I got the results.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvI8F_K4PT6CKIynNE75xkPhGA32zPTuOMLylAytB5Skkynn-tdoXBUQqevkf0EUDep7QSNnWcW0KQ4f7L2D50_CNzvQzL2DyPCh28t4IKAVRAF4ubuRCnxyDiq9022U71EJ9HI7Sr_8A/s1600/Painting.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvI8F_K4PT6CKIynNE75xkPhGA32zPTuOMLylAytB5Skkynn-tdoXBUQqevkf0EUDep7QSNnWcW0KQ4f7L2D50_CNzvQzL2DyPCh28t4IKAVRAF4ubuRCnxyDiq9022U71EJ9HI7Sr_8A/s200/Painting.jpg" width="149" /></a></div>
It's so strange waiting for results for procedures on my kids. Usually the result everyone wants from any medical test is the all clear, but instead I always find myself hoping that they comeback with something that is easily treated instead. I don't want anything to be wrong with my kids, but when they scream in pain and don't sleep at night I can see that something isn't right. So I want a reason. A solution. A plan of action. The results that came back today for Lu is an abnormal amount of fluid around the optic nerve. It might not be anything. It might be something. It might be causing enough pressure to cause the pain. It might be a symptom of something else going on with her eyes. But just from the MRI we really don't know. So just now I scheduled her into the pediatric eye center in Phoenix for a thorough and once again anesthetized procedure to dilate her pupils and examine all the parts of her eyes at 8:15 tomorrow morning. On the one hand I am completely relieved that there are no tumors, no major malformations of the brain, no obvious and dangerous swellings inside. I am glad to know that the worst isn't there. I'm also slightly relieved that something showed up because if nothing at all had we would have hit a dead end with no way of knowing how to offer relief. And yet what we are left with now is yet another procedure to explore and try to find the cause. Can I cross my fingers three times in one post? Sure why not. Fingers crossed!<br />
babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1tag:blogger.com,1999:blog-2756466903407524974.post-38675949993908711012012-11-26T12:39:00.001-08:002012-11-26T12:39:21.490-08:00Freedom!<br />
The rest of our California trip:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT0Y8x31dwixIiagJO23NHyWB0iKZi6wMrFWe30-2vMSslXzYTLcqNXseNZQ11jH5tuggdwh_y5BicJ7GvicqYJ5C8qDRmkYeP3WmpjU1UXotKPTRRWwFuRGn771EA9uKzeDm2sbsSH5Y/s1600/skyspace.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT0Y8x31dwixIiagJO23NHyWB0iKZi6wMrFWe30-2vMSslXzYTLcqNXseNZQ11jH5tuggdwh_y5BicJ7GvicqYJ5C8qDRmkYeP3WmpjU1UXotKPTRRWwFuRGn771EA9uKzeDm2sbsSH5Y/s200/skyspace.jpg" width="149" /></a></div>
After 2 days at Disneyland we took a break from the park to do a couple of other LA area things. Sunday morning we drove up to Pomona College to visit an old friend and see my Dad's skyspace on campus in the courtyard by the geology building. I had visited the site back in 2007 when it was still under construction but had never made it back to see the completed piece. I was glad we went. It's a real stunner. Any James Turrell fans out there should put this on their 'must see' list for sure.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZu9bNS_W63hNV6dUli-FYvivEFjfq5qPRKuuTdlfjlQu6ncf91tsYVnDpcDzuMhUU7RrXGe-9vG8GBp0IFLOXvCtNbe1RxFTGMFzMbQb5loAroIXUZ-M_ch63c2f3AE5vLMO-nL0pAvU/s1600/fountain.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZu9bNS_W63hNV6dUli-FYvivEFjfq5qPRKuuTdlfjlQu6ncf91tsYVnDpcDzuMhUU7RrXGe-9vG8GBp0IFLOXvCtNbe1RxFTGMFzMbQb5loAroIXUZ-M_ch63c2f3AE5vLMO-nL0pAvU/s200/fountain.jpg" width="149" /></a></div>
Unfortunately Lu was pretty freaked out on the drive there and as we drove around campus to park. To be honest, she tends to get really anxious and freaked out whenever we drive around in a city with big buildings. Parking garages in particular seem to set her off. She isn't able to explain why this is to us yet, but my best guess is that the main multi-story building with parking garage she has ever been in is Phoenix Children's Hospital with the Flagstaff Medical Center a close second, both of which have been the sites of numerous appointments, tests, procedures and surgeries. She reacted to the beautiful buildings at Pomona in much the same way.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzB3LC-HcFNHcuLCIzMr0DAgzklYpyKg1GliP0uUEjDNroXwHLiHZ6Sin2K_tyZtaz_aFu-kNc_tbl5AZwTqh91-ZnTjis4gD92yNMeaJKRMl3DkFqGcFzb6o_HiIvLNG7SHN3K0Q9sEg/s1600/running+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="114" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzB3LC-HcFNHcuLCIzMr0DAgzklYpyKg1GliP0uUEjDNroXwHLiHZ6Sin2K_tyZtaz_aFu-kNc_tbl5AZwTqh91-ZnTjis4gD92yNMeaJKRMl3DkFqGcFzb6o_HiIvLNG7SHN3K0Q9sEg/s200/running+2.jpg" width="200" /></a></div>
However once we managed to coax her out of the car and she realized that we weren't going anywhere scary, something beautiful and amazing happened. In the middle of campus there is a long, lovely green, surrounded by tress and buildings with no cars in sight. Because Lu's instinct is to bolt whenever there is open space in front of her, for her own safety she has never been allowed to walk through a door to the open outside without holding onto someone's hand and more recently also holding onto Dahanna's leash.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKWIoQa7RCvtRqOdml8UB2cHCEhv-ixste_EDxGRUgso5dF8IJB9GNj5KG5Quo2XRnan3XKYYIYm06HXtQ45u8usFHqu6GXjT2CrhFZ84hH8KywWAqO4laMM2gns9fXM6H_VQPc-X33R4/s1600/running1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="185" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKWIoQa7RCvtRqOdml8UB2cHCEhv-ixste_EDxGRUgso5dF8IJB9GNj5KG5Quo2XRnan3XKYYIYm06HXtQ45u8usFHqu6GXjT2CrhFZ84hH8KywWAqO4laMM2gns9fXM6H_VQPc-X33R4/s200/running1.jpg" width="200" /></a></div>
It is my acute and ever-present terror of her coming into contact with a moving vehicle that is the cause of this. This is not an unfounded fear. We had too many early close calls to ever risk being negligent about this. But at the same time, it is heartbreakingly sad.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL1mVkoo-cO2R5UKJWBATnL9V6t_TdlMfjGq1pUhvkHMjtxUFm9vevKfSTIZ4mZXvdJLBl0-ecEXft9mzZzCIF_l1YqR1WLmLjLsDZdT1yOLttcxxe3UHfZjHKcGMKR2DWJqllm2oSO1w/s1600/running3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL1mVkoo-cO2R5UKJWBATnL9V6t_TdlMfjGq1pUhvkHMjtxUFm9vevKfSTIZ4mZXvdJLBl0-ecEXft9mzZzCIF_l1YqR1WLmLjLsDZdT1yOLttcxxe3UHfZjHKcGMKR2DWJqllm2oSO1w/s200/running3.jpg" width="149" /></a></div>
Sometimes she seems like a colt stuck in a stable who desperately wants to just get out there and run. I sometimes wonder if she would do so much jumping and pattern walking if she were just able to get out there and run.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ZlOvTdJBws2hy2kS21pxGvBoP-uZxGMokLEDCEBJX4NJ6ZuMr1RCBmSivd1AUevz6fMXYz17ByxZwCe04flu1TUuc0_fM3sVusM7C5ii7C8QtJzgjUqjrKZYVnk3v-RPeRNYuU4X0Ng/s1600/twirl3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ZlOvTdJBws2hy2kS21pxGvBoP-uZxGMokLEDCEBJX4NJ6ZuMr1RCBmSivd1AUevz6fMXYz17ByxZwCe04flu1TUuc0_fM3sVusM7C5ii7C8QtJzgjUqjrKZYVnk3v-RPeRNYuU4X0Ng/s200/twirl3.jpg" width="149" /></a><br />
<br />
<br />
<br />
<br />
It is my hope that as she gets older, with the help of Dahanna, she could learn to do track and field, or maybe even long distance running, if there is a way to keep her safe while she is doing it.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTymhlWzK4o50hI80tUteXBCe80NlJlbrHVU3IJRBw8NxNXKgoITuvz988QsyhWr6bX2vH8U-4A2K7r6w06BfmXv12sqpIh2sSFvE84FJCK8Vtp6k_g6cAWXDT6NkhAQMKECoABdsNHSs/s1600/twirl1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTymhlWzK4o50hI80tUteXBCe80NlJlbrHVU3IJRBw8NxNXKgoITuvz988QsyhWr6bX2vH8U-4A2K7r6w06BfmXv12sqpIh2sSFvE84FJCK8Vtp6k_g6cAWXDT6NkhAQMKECoABdsNHSs/s200/twirl1.jpg" width="149" /></a></div>
Because there on the Pomona green, we let her go and she got a taste. Freedom. Her happiness was palpable. She loves to run.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaCKVN5lLbY1XOdAe-v8VXep5mCuTUtA86Y6Dcd67J_l1oiZO1y4cd0BBwCrfJMYQJFZ0uNVNnNgTrYtg-2yFXeTay5JlNYeUxxLefY2UB-N_GTlGxuWGirkgxsUMDsFN2Whca5Mj0eH4/s1600/twirl2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaCKVN5lLbY1XOdAe-v8VXep5mCuTUtA86Y6Dcd67J_l1oiZO1y4cd0BBwCrfJMYQJFZ0uNVNnNgTrYtg-2yFXeTay5JlNYeUxxLefY2UB-N_GTlGxuWGirkgxsUMDsFN2Whca5Mj0eH4/s200/twirl2.jpg" width="149" /></a><br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
I don't mean to say that she has never run before, she gets to run at recess and during PE and at the completely fenced in park where we go to play in Flagstaff. And we try to give her lots of physical activity with both the big trampoline in the back yard and the two small ones we keep in the house. She goes for pony rides and outings. It's not like she never gets to do anything or go anywhere, it's just that someone is always holding on to her or is right there within arms reach to slow her down if she gets going too fast.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi26agwYGR8Z_1Y3eSOSzlVd8rU3v6OTIMGmWqS3eMAQ2sDwGKrZwk97vT2vw_OBHe8nJ9pmp3F1selr5wP4-scf-yIRK6fDHd-slg47087RL4WypkucwG0vkLSWbhRPnHIsDXLjXuUie0/s1600/beach2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi26agwYGR8Z_1Y3eSOSzlVd8rU3v6OTIMGmWqS3eMAQ2sDwGKrZwk97vT2vw_OBHe8nJ9pmp3F1selr5wP4-scf-yIRK6fDHd-slg47087RL4WypkucwG0vkLSWbhRPnHIsDXLjXuUie0/s320/beach2.jpg" width="239" /></a></div>
After a good old run at Pomona, we left to meet some of Stew's friends at the beach. We went to Huntington Beach which the GPS said was only 15 minutes away from our hotel. Somehow it took us over an hour to get there with Lu getting nervous as the drive went on. But when we finally got there, another revelation! It was a dog beach so we decided to let both Lu and Dahanna have a break from their leashes. This was a very difficult thing for me. Back when Lu was first being diagnosed I had this recurring nightmare where I was at a beach, knee high in the water, holding Myffy in one arm and holding Lu's hand with my other hand. Suddenly, out of no where, a huge wave hit us and we were all knocked back into the swirling water. I managed to stand and pull Myffy up above the water but I had lost hold of Lu. My instinct was to dive back in to search for her but I was afraid of drowning Myffy in order to try to save Lu. I would wake up thrashing in bed in a sweat as if swishing my arms through the water searching for her.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvuFKVzrXh0aXIbVEY8jkFGNGVUCZgo89OqKMulqVL1Kdz2018muq5JayJYptb_Hwagf4qMRZwKk9jCJRJV4b77UGgl4jWnOFcbpCqwK82b6vMnZEb-am0HRg2IzV_Z4l2q0zzMqo-4zA/s1600/myffybeach.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvuFKVzrXh0aXIbVEY8jkFGNGVUCZgo89OqKMulqVL1Kdz2018muq5JayJYptb_Hwagf4qMRZwKk9jCJRJV4b77UGgl4jWnOFcbpCqwK82b6vMnZEb-am0HRg2IzV_Z4l2q0zzMqo-4zA/s200/myffybeach.jpg" width="149" /></a></div>
I told Madison about all of this before we got to the beach. I told her that I would need to stay with Myffy and I was trusting her to always have Lu. She and Lu worked it out that as long as Lu ran along the beach Madison would run along side her, in between Lu and the waves. Lu could go into the water if she wanted but had to hold on to Madison's hand. It worked out well. Lu ran to her heart's content, she and Madison both got wet, and Myffy and I played on the beach while Stew had a chance to visit with old friends and do some wading out into the water with Lu as well.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAijReD3RarCAYujSHS8gLcEykyHM20NCYYPATxS4Br4xlBzsloK5dOczBZS7REVvDw_hAIEE6UPZaaWbeXGPByXF9Kg8YWgaZbSMH6yUWw2EfF8rdoTltVYGS4gvTxM4A2VroFhZy9Aw/s1600/beach1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAijReD3RarCAYujSHS8gLcEykyHM20NCYYPATxS4Br4xlBzsloK5dOczBZS7REVvDw_hAIEE6UPZaaWbeXGPByXF9Kg8YWgaZbSMH6yUWw2EfF8rdoTltVYGS4gvTxM4A2VroFhZy9Aw/s320/beach1.jpg" width="239" /></a></div>
I think as much as taking the kids to Disneyland was a triumph for the family, taking Lu to the beach was overcoming an enormous fear for me. And I realized that sometimes my fears for her safety may be stopping her from experiencing life. We're not about to remove all of the safeguards we've set up for her, but at the same time, with the right people who I know I can trust, I think that it is time for me to start letting go just a little in order for her to discover more of the wonder and joy that life has to offer. Wind in her hair. Sea spray on her face. Pink-cheeked exhaustion. Freedom. Happiness.<br />
babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-46209282211666722242012-11-12T16:51:00.001-08:002012-11-12T16:55:12.783-08:00WE DID IT!!! Our Autism/EE Disneyland Adventure!<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFtlS458d56Oj4n9qNsnOEZMa9fhxsot2Akv_HTBacz1PuNxBfPEcVnLwhaiUA-gh4FFOI4kN6zUrd5nJtoEsPq1i21sjtIaVvJG8aoKbU21ra0M1ZfQqhC8EJgFCuhgZbSDxNs5OGHgo/s1600/Disney+13.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFtlS458d56Oj4n9qNsnOEZMa9fhxsot2Akv_HTBacz1PuNxBfPEcVnLwhaiUA-gh4FFOI4kN6zUrd5nJtoEsPq1i21sjtIaVvJG8aoKbU21ra0M1ZfQqhC8EJgFCuhgZbSDxNs5OGHgo/s320/Disney+13.jpg" width="239" /></a></div>
Well we did it. We took our kids to Disneyland! A year ago I didn't think a trip like this was possible. Back in January I even wrote this post called <a href="http://babybabyracer.blogspot.com/2012/01/disneyland-and-dog.html">Disneyland and the Dog</a> about how we couldn't imagine being able to take our kids to Disneyland before learning about Arizona Goldens' Autism Service Dog program. And now, less than a full year later we have accomplished an enormous family goal! We have gone on our first completely non-medical family vacation in 5 years and did the fun kind of things that other families do with their kids.<br />
<br />
There were a few hiccups and tough times along the way, the drive was long and mornings and evenings so off schedule caused a fair bit of anxiety for the kids, but the actual time spent in the Disneyland park itself was so much better than I could have hoped for.<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihayxkrk68ra7b98ZvChdAWUyfxqp-aHZPgCO9HzjqbKwP9mrpX2oWs79FpLLAhsUF0WCjox5tl7chRTGbFlx61bS5D7CtrgL29WJxinph_3f5FYH_eK8Rpy_bOzamJOkL2Bg6PKzzElM/s1600/Disney+12.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihayxkrk68ra7b98ZvChdAWUyfxqp-aHZPgCO9HzjqbKwP9mrpX2oWs79FpLLAhsUF0WCjox5tl7chRTGbFlx61bS5D7CtrgL29WJxinph_3f5FYH_eK8Rpy_bOzamJOkL2Bg6PKzzElM/s320/Disney+12.jpg" width="239" /></a></div>
We decided not to buy multi-day passes ahead of time because I am so used to the things that we expect the kids to like the most turning out to be too difficult or traumatic. I could just see us getting there and the crowds and noise and motion being too much for the kids to handle for more than just an hour or two. I fully expected to only stay 2 or 3 hours on the first day. But thank goodness we planned ahead and brought Lu's tube feeding equipment and food with us in back packs into the park. We stayed for more than 7 hours and walked more than 5 miles inside of the park for 2 days in a row (thanks fitbit step tracker)!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnqwTp8myLJWjnwpTML1RwKRPwAlFoNc_dUcg3qOPYVwR6OS0bNivIBdAAdVqVplZ9B6_-SFdB0xveuHaxFwPjjgvC6-zOy-Qbe9xcJLGeSyTpfY3p4hSX2uaHa-WVRrd_dQuVRW-1SCg/s1600/Disney+3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnqwTp8myLJWjnwpTML1RwKRPwAlFoNc_dUcg3qOPYVwR6OS0bNivIBdAAdVqVplZ9B6_-SFdB0xveuHaxFwPjjgvC6-zOy-Qbe9xcJLGeSyTpfY3p4hSX2uaHa-WVRrd_dQuVRW-1SCg/s320/Disney+3.jpg" width="239" /></a></div>
I need to give some credit where credit is due here and a ton of credit goes to the lovely Madison, Tallulah's one-on-one school aide and one of her home ABA interventionists; as well as credit to the also lovely Dahanna who was a total star! The way we worked things was that Madison mostly was in charge of Tallulah and Dahanna, walking with them both, giving Dahanna commands, holding Lu's hand in one hand and Dahanna's leash in the other, keeping the two leashes from getting entangled and the rest. I was in charge of Myffy and had a back pack with just the feeding pump, bags, tubes, adapters and syringes in it which is not very heavy in case I needed to run after Myffy or jump in to help Madison with Lu. And Stew was in charge of everything heavy and everything else; the stroller, the cold bag with Lu's food in it, and another back pack with all of the other stuff we might possibly worst-case-senerio need.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhibr1O9ORWEpN-01B80tgJQ8bek5OLysYOSxyiIO2JEMgq7PAVT641X8Hy_sQe9H17H-8qsXR6A_LS-wS_pXcgSBz9JOjtioaiGtY8Xe9PPbSoLxMlB40AvCWj6iRclQZGAPZd-nEPOwQ/s1600/Disney+4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhibr1O9ORWEpN-01B80tgJQ8bek5OLysYOSxyiIO2JEMgq7PAVT641X8Hy_sQe9H17H-8qsXR6A_LS-wS_pXcgSBz9JOjtioaiGtY8Xe9PPbSoLxMlB40AvCWj6iRclQZGAPZd-nEPOwQ/s320/Disney+4.jpg" width="239" /></a></div>
Dahanna did a great job of navigating the crowds, waiting in lines, keeping our group together like a sheep herding dog and riding all of the rides with Lu but one (that one was the Dumbo ride which I was afraid to put her on because I had this momentary vision of her hopping out of the Dumbo when it goes up and down in that shakey way, it was the first ride we tried and it took me awhile to realize that she can handle pretty much anything we can). The people around us marveled at her calm demeanor and professional air as she hopped in and out of all the crazy shaped ride cars and never even batted an eye when the Pirates of the Caribbean ship plunged down into darkness and water sloshed in, getting her pretty well soaked by Lu's feet.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUaR7r8APDO-BNNHcKU34iDE-UDnxhT6wRu9gzv84D6DBBe33EhQKAQfCWcipEzYXMiIsNsdFJonUj5vYLF25ihTyD1221RJCjNgtQbHOF8zrLPsR21ALoc35niPvuQCDCXVfeSzbBJeI/s1600/Disney+6.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUaR7r8APDO-BNNHcKU34iDE-UDnxhT6wRu9gzv84D6DBBe33EhQKAQfCWcipEzYXMiIsNsdFJonUj5vYLF25ihTyD1221RJCjNgtQbHOF8zrLPsR21ALoc35niPvuQCDCXVfeSzbBJeI/s320/Disney+6.jpg" width="320" /></a></div>
One thing that I was really impressed with on this trip that I never even noticed as a kid was how alert and awesome the Disneyland Staff are. Maybe this was accentuated by having the service dog which is a very visible sign of a kid with a disability, and maybe it was having the guest assistance pass which put us into the disabled lines, but even when we were just walking around and trying to get food I felt like the staff were constantly watching, ready to help and totally on the look out for kids in distress.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9VsqtiXUAoqPeLJ0wF3xWvIVX_oBvxJtVc3Lh-PDeoiUbXdl7gXUW1huzN44aN0HMvXmlrmyt4wAQ8kU7HRXODLlAshN2Rml5aiPGWW8M3csr7Gnw7FiyB03jHn8M48W0GxT1O0cGynQ/s1600/Disney+14.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9VsqtiXUAoqPeLJ0wF3xWvIVX_oBvxJtVc3Lh-PDeoiUbXdl7gXUW1huzN44aN0HMvXmlrmyt4wAQ8kU7HRXODLlAshN2Rml5aiPGWW8M3csr7Gnw7FiyB03jHn8M48W0GxT1O0cGynQ/s320/Disney+14.jpg" width="239" /></a></div>
When we went to eat the chefs came out to talk to us about the kids' food restrictions, and even though Lu never actually ate anything by mouth the whole time we were in the park, I so appreciated their willingness to make up special food that my kids could safely eat. We got gluten free rolls, BBQ meats that were not dredged in flour and had a special sauce, pancakes and burritos that were gluten and diary free. It was great. Myffy ate a ton of everything and hopefully next time we go Lu will be interested in eating as well. Normally Lu does not like doing her tube feeding anywhere but in her own bed at night, on her beanbag or on the sofa during the day, and she will let us coax her into feeding at the dining room table with us as we eat dinner for 15-20 minutes usually before asking to move to the sofa. So even though we brought her feeding stuff with us, I was pretty sure she would want to go back to the hotel. But she didn't. She let us hook her up right out there in public at the tables of the Disneyland restaurants. And she hardly even seemed to notice.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaOyn92DhJs1F3acR0SMB5vBiXHL9qD7-oYwU65jJKslHLvdBaHPofr_EPuJvEpi2PEjtEgGcvt-uJAc6uw-6WL_K_6y2BMpIPQ0abwIOsQ85Qnt9zkiDUoB08IK3xh45C0FT5eGBehR0/s1600/Disney+11.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaOyn92DhJs1F3acR0SMB5vBiXHL9qD7-oYwU65jJKslHLvdBaHPofr_EPuJvEpi2PEjtEgGcvt-uJAc6uw-6WL_K_6y2BMpIPQ0abwIOsQ85Qnt9zkiDUoB08IK3xh45C0FT5eGBehR0/s320/Disney+11.jpg" width="239" /></a></div>
On the first day there it wasn't until half way through lunch that I realized that I'd completely forgotten to bring Lu's ipad which is usually the only way we can get her to sit with us through a meal. I felt a moment of panic but then looked around and realized that everything around us was better than a life-sized ipad. All day long Lu's face had the most amazing glow of happiness. And once she got used to the routine of waiting in line and then going on rides, she eventually didn't even seem to mind the wait too much. Especially once she got tired and wanted to sit in the stroller while waiting.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO1-aptB6ovzywViRoW53mx-a94BXT8r2sOW8So0cNX6n7b7mOADF01nf3Z-DzfXJxj4OPKSKxcli4wisVPJ4rJsaLmniGg_sqaeSdG0V-Of-SCyj-5tA2vt7YhA3E8Nqf2UxepOQbDms/s1600/Disney+9.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO1-aptB6ovzywViRoW53mx-a94BXT8r2sOW8So0cNX6n7b7mOADF01nf3Z-DzfXJxj4OPKSKxcli4wisVPJ4rJsaLmniGg_sqaeSdG0V-Of-SCyj-5tA2vt7YhA3E8Nqf2UxepOQbDms/s320/Disney+9.jpg" width="239" /></a></div>
We rented the stroller with Myffy in mind because her legs are so short and she is a pretty slow walker, but she would not go in it even for a moment. She wanted Mommy up and no one but Mommy. So I carried her. All the time. For over 7 hours and over 5 miles a day, two days in a row. And boy was I feeling it by the end of the second day. I was so glad I could look forward to that chiropractor appointment I'd made for a couple of days after we got back. I made a mental note to schedule a massage as well. But aching backs aside, it was an awesome trip and we never even came close to my worst fear of losing a child at Disneyland.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVkKNLiwD-JFUf2s_FIDr-JNPvC_a-pCf_I5fzedgPI-prMbPYIRwKLDbQ6sHXSwWpeNEHIciKcLNt536zMzNatAUTIR-hdgn_SbHT6c3oyLuUCHZoBPMJ2Ze7APEfCdBP446tigpbYlc/s1600/Disney+16.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVkKNLiwD-JFUf2s_FIDr-JNPvC_a-pCf_I5fzedgPI-prMbPYIRwKLDbQ6sHXSwWpeNEHIciKcLNt536zMzNatAUTIR-hdgn_SbHT6c3oyLuUCHZoBPMJ2Ze7APEfCdBP446tigpbYlc/s320/Disney+16.jpg" width="239" /></a></div>
It was a couple of long hard days, and Myffy didn't quite make it without a little nap in line for It's a Small World (which I think we rode 7 times during the two days), but all in all I'd call our Disneyland Adventure an unqualified success!babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-67335968876953167082012-10-09T10:49:00.003-07:002012-10-09T10:49:57.466-07:00Myffy's Birthday, a new medical mystery and getting ready for Disneyland!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1YrFHQT55NJ0ry8tMuJ83x7AIIr42oTg0Cc3Z2FEaxBL950vuSvVpQ-8PTB3HUobHcf1xQ-NhnGHiYPt11G9Bj8Yk7cijLOmwwQ3OMmjBoA9alLwmQsgZfL6NbbZaoyNCfHWTTW2GZGE/s1600/Net+smile.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1YrFHQT55NJ0ry8tMuJ83x7AIIr42oTg0Cc3Z2FEaxBL950vuSvVpQ-8PTB3HUobHcf1xQ-NhnGHiYPt11G9Bj8Yk7cijLOmwwQ3OMmjBoA9alLwmQsgZfL6NbbZaoyNCfHWTTW2GZGE/s320/Net+smile.jpg" width="238" /></a></div>
My sweet little Myffy is now a big three year old girl! Turning three has become an interesting rite in our family because besides being a significant milestone for any child, at three our kids also age out of the Arizona Early Intervention Program and age into a whole new set of agencies and services. Especially now that Myffy has her official diagnosis of ASD.<br />
<br />
Myffy's party was super fun. We decided to keep it small and a bit on the down low since that is what usually works best for both kids. In the past when we have packed the house for a party that is usually when Lu gets overwhelmed and needs to retreat, and even Myffy seems to prefer smallish play dates to having tons of people around. And this way everyone got to have a couple of turns on the pony.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo4p3E3R4Gw7nfx5l-3cwtoO_Kh19pCNKtTHpp8QTgb7DGInTXryIWTzRFs891sOoeoWUUPQxDHXhtdxHNp0IpTke7DDQPP-NZmaZaBvh4vk0REY56tbATgwgvISfQ1wjfgKPj1P_ZV88/s1600/Lu+and+Paige.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo4p3E3R4Gw7nfx5l-3cwtoO_Kh19pCNKtTHpp8QTgb7DGInTXryIWTzRFs891sOoeoWUUPQxDHXhtdxHNp0IpTke7DDQPP-NZmaZaBvh4vk0REY56tbATgwgvISfQ1wjfgKPj1P_ZV88/s320/Lu+and+Paige.jpg" width="239" /></a></div>
It was really nice to see Lu and her best friend from school playing together. Can I tell you how exciting it is to write 'best friend' about Lu? But it's true! They hang out at school and have been having regular play dates on the weekends lately. The best thing is that her friend seems to really enjoy Lu's company without getting frustrated or bored by the lack of conversation. They jump on the trampoline together, paint together, draw together, swing together, run around together and basically just hang out, together! It's so great. And at Myffy's party they rode Lu's pony together.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYixr7XPKPx4slhs1H28UQb5QK7WUXn7lXppez2dFcsbtu1-XqOGsdV1o2ikC7pm7LYsWnruDsql_Nq88MbrswAIsFXOdQCT_WHZ03uYLvFqH5QKZDgCHtP8cHrJBm6q0PPywQGhWj3V8/s1600/pony+smile+daddy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYixr7XPKPx4slhs1H28UQb5QK7WUXn7lXppez2dFcsbtu1-XqOGsdV1o2ikC7pm7LYsWnruDsql_Nq88MbrswAIsFXOdQCT_WHZ03uYLvFqH5QKZDgCHtP8cHrJBm6q0PPywQGhWj3V8/s320/pony+smile+daddy.jpg" width="239" /></a></div>
As the Birthday Girl Myffy of course got lots of pony rides! In the past she has only seemed vaguely interested in the pony, sometimes wanting to get up with Lu if Lu is riding, but never all that interested in riding herself. Today all that changed. Which is probably good since Lu is going to out grow Cinnamon someday and like all other things between siblings, Cinnamon can get handed down.<br />
<br />
I love how happy she was to be up there and she even said 'yeehaw' and 'giddyup' like Jesse from Toy Story, and then said 'more riding horse Mom,' when she wanted another ride. Gotta love an expanding vocabulary!<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDJyj-M9gQ0j5w3lNPDOE1stqA30tuzPY9YTNrxF8kv70GTaftOFHI9rfj_9Svw6T4ZOOvjkArkME9zJ0csFsSergXc8yN8T8p94owJMbdkGOMrWmkz4r1jyxDCogQKPNZVCfk20260dk/s1600/sleepy+princess.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDJyj-M9gQ0j5w3lNPDOE1stqA30tuzPY9YTNrxF8kv70GTaftOFHI9rfj_9Svw6T4ZOOvjkArkME9zJ0csFsSergXc8yN8T8p94owJMbdkGOMrWmkz4r1jyxDCogQKPNZVCfk20260dk/s320/sleepy+princess.jpg" width="239" /></a></div>
In the midst of all the activity of Myffy's birthday and starting her new school with her own IEP and services and everything, some new things have come up with Lu. Lu seems to be having head aches. Regularly. Pretty much daily. But not constantly. Intermittently. She shows her distress by pressing her fists against her forehead, sometimes hitting, sometimes pressing her palms hard against her eyes. She has started hitting her head on the wall again which we haven't seen in ages except for a little bit during the failed food trials last summer. She has also been saying "eyes" a lot while opening her eyes wide as if to show me. I have looked for something in her eyes but have not seen anything. Sometimes she rubs them. Often she cries. And she is grinding her teeth loudly. The teeth grinding is actually the first thing that we noticed. It's been going on for several weeks. We saw the dentist (an ordeal in and of itself) who saw nothing in his exam to make him think it was dental pain, but suggested we get dental xrays- something they have never been able to accomplish with Lu before. We saw a new doctor who had several ideas but wanted dental xrays first. A dose of valium and versed later we were able to get decent xrays on the second try. The dentist was so thrilled with actually being able to work on her that he asked that she have versed before every appointment. Sigh. We also saw her GI doctor to have her mic-key button replaced. Which is completely terrifying to Lu. That doctor also suggested that we sedate Lu before every clinic visit. Even just the check ups. I'm really struggling with all of these requests to medicate her. I understand why they ask. She is difficult to examine, difficult to work on, distressing to other clients and clearly expresses her terror. But seriously, how much sedation can one little 5 year old take? I'll probably come back to this in another post.<br />
<br />
But back to the headaches: her dental xrays came back with a little decay showing, not enough to cause pain and not even enough to warrant filling right now. The dentist suggested filling it at her next cleaning which he thinks he can do with versed. Otherwise we have to book her into the hospital with full anesthesia to have a small filling done. The new pediatrician wanted to rule out dental pain before xraying the sinuses and then moving on to other imaging, like MRI or CAT scan. And then there is the possibility that she might be developing migraines. Both her paternal grandmother and a paternal aunt have migraines. Which of course won't show up on any of these scans. The symptoms are affected by a dose of children's ibuprofen which I though would rule out migraines, but the doctor says not necessarily.<br />
<br />
This is one of those many, many moments when I wish that Lu could communicate enough to at least tell us a little more about this pain. Where is it? What does it feel like? Is it there all the time and just gets worse and better or does it completely come and go? Is it all of a sudden or does it slowly build? Is it a sharp pain, or more like pressure?<br />
<br />
Oh and then yesterday I got a note from school in her bag saying that they tried to test her eyes and recommend that she see an eye doctor. One more possibility. If she has vision problems, that could be causing pain too, right? So today my list is full of new appointments to make and new conversations to have with various doctors. And probably a call or two to the new secondary insurance company since we were informed last month that Lu's old Medicaid insurer Capstone (who we never had a single problem with) was suddenly no longer her insurer.<br />
<br />
In more exciting and upbeat news we are also starting to prepare for our long awaited trip to Disneyland! I've ordered Lu's tube feeding supplies to be delivered early and her prescriptions as well. I've started making checklists for packing to make sure we have everything we will need for the kids and Dahanna for as many contingencies as I can imagine ahead of time. I need to find out where the closest stores that carry allergen free foods are relative to the hotel and figure out which foods to just bring with us. I'm nervous but excited. I really hope they will love it. Fingers crossed!babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1tag:blogger.com,1999:blog-2756466903407524974.post-47876384084891255512012-09-05T21:51:00.000-07:002012-09-05T21:51:26.751-07:00Myffy's Diagnosis and Our Golden (Retriever) Summer<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiweX-IM8qGg1qzDQWiv2rOCBCFuStCpP1rhuluYr-oBgotFpfvnkthGr7fmYnAWtDCMKtYSKXrmdOX3BsOMP7nJhaFWBV2GcMi55HLRuUXsxHdehQtE8hZ99dX8d0ng3lj-j3ltcerW_4/s1600/Myffy+Smile.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiweX-IM8qGg1qzDQWiv2rOCBCFuStCpP1rhuluYr-oBgotFpfvnkthGr7fmYnAWtDCMKtYSKXrmdOX3BsOMP7nJhaFWBV2GcMi55HLRuUXsxHdehQtE8hZ99dX8d0ng3lj-j3ltcerW_4/s320/Myffy+Smile.jpg" width="320" /></a></div>
Well, it's official. I have the document in my hand. I knew it was coming. I knew what it would say. If I had any doubts they vanished when I talked to the psychologist last week and set up today's appointment. I asked her if she'd scored the tests yet and did she know. I couldn't stand anyone else knowing if I didn't know. So she told me. Autism. An autism diagnosis for Myffy. Here we go all over again. At least I didn't break down in sobs on the psychologist's sofa this time. Still it was hard to breathe and swallow on the ride home. The hard rock of autism sits deep in the middle of my chest. She's still my beautiful, funny, silly, awesome little girl. I guess I was just hoping that with all of the early intervention she'd been doing since she was 16 months old that we might have been able to alter the course enough that she wouldn't actually need a full and official diagnosis. I am thankful for every moment of therapy she has had, for all of the language and skills that she has gained during a stage when Lu was quickly sliding steep into a very deep regression. I feel quite certain that if we had not started ABA therapy when we did Myffy would likely be now where Lu was at this age. Myffy has benefitted from all that we have learned going through this with Lu. But beneath it all, the autism is still there. So we continue. The next month will be filled with further applications, tests and evaluations to get a special education preschool placement and state services for her therapy program. Oh and, last weekend we got Myffy her own dog.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYK8nuPY9J70E8s0CNZmZIpHFg9IK_i8sMqaURKlD0c_Oc5-z0keh-y3gGsLhPFxDyLzAFCpX5iVPoq6qCWKP1WG0MWs7H9vF7fygADFEcByh8MaO1Ody2hDMP9wVDiC3i38fW2RLmgJQ/s1600/D+C+sofa.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYK8nuPY9J70E8s0CNZmZIpHFg9IK_i8sMqaURKlD0c_Oc5-z0keh-y3gGsLhPFxDyLzAFCpX5iVPoq6qCWKP1WG0MWs7H9vF7fygADFEcByh8MaO1Ody2hDMP9wVDiC3i38fW2RLmgJQ/s320/D+C+sofa.jpg" width="320" /></a></div>
If you are our Facebook friend and have seen the photos we have been tagged in lately, you may be wondering if we have completely lost our minds. First in June we get Dahanna for Lu and go through a grueling two week boot camp, and now from our photos it appears that we are doing it all over again for Myffy this time. Let me take a moment to explain:<br />
<br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigytaZF1wNnOW-CopEuiaSWhqzL63by6qrWZWRSlj-up9ZFlF2q2W_aa9mCdWp5y77Rfl-ACtHkJBPx8h2-9HfRll7pCD24a8FtFIFDJgc54fnCUW5gNm6ggBBDDArpKtDf1Wm-zOuZys/s1600/L+D+at+school.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigytaZF1wNnOW-CopEuiaSWhqzL63by6qrWZWRSlj-up9ZFlF2q2W_aa9mCdWp5y77Rfl-ACtHkJBPx8h2-9HfRll7pCD24a8FtFIFDJgc54fnCUW5gNm6ggBBDDArpKtDf1Wm-zOuZys/s200/L+D+at+school.jpg" width="148" /></a></div>
First of all, things with Lu and Dahanna have been going great! Since June we have watched Tallulah and Dahanna bond and develop skills and routines that have helped Lu to weather restaurant meals, changes in schedule and most anxiety-provoking for us all, the transition to Kindergarden. Dahanna loves working in school and is so good about lying quietly under the desk until it is time to go to another center or circle time or art/music/PE/recess. She's a big hit with the kids and has already helped Tallulah to start to make friends! It has been amazing and awesome and completely gratifying, but even as Lu's behavior has become more predictable and easier to manage with Dahanna in the mix, things have become progressively more difficult for Myffy.<br />
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUvjFIR3eQSo0Hpt1bity0IFAyA40gImr5sVr1JEiTu7klyPAdezmbU9GwgeDQx2I3NC5shdyuUj5W8ZMZbj62CHrahXhRWcy2-7eEGTcjR9mjiF81gfab78CRXIXjMSJsHW9paEAjcc/s1600/Story+time+at+school.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUvjFIR3eQSo0Hpt1bity0IFAyA40gImr5sVr1JEiTu7klyPAdezmbU9GwgeDQx2I3NC5shdyuUj5W8ZMZbj62CHrahXhRWcy2-7eEGTcjR9mjiF81gfab78CRXIXjMSJsHW9paEAjcc/s200/Story+time+at+school.jpg" width="200" /></a><br />
During Lu and Dahanna's Boot Camp back in June when it was so important for them to start their relationship off right, we quickly realized that even more often than Lu melting down and causing us to abort trips and outings, it was now Myffy who had become the wrench in the gears. Lu would be doing great holding her leash and even trying to talk to Dahanna when prompted to give her commands, but when Myffy would scream Lu's first reaction is to cover her ears. Brian the Service Dog trainer came up with the great solution of teaching Lu to loop the leash over her wrist so she could cover her ears without dropping the leash, but still it make public access training difficult. In the end we made arrangements to go out and work with Lu and Dahanna almost exclusively without Myffy there. It was just too much to juggle practicing the new skills with the dog and managing Lu to also be managing Myffy too.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCEkIO8IfYFuwE0lLczIIBWYam8THyXobNTrsTgW2_U02mhhilXpfZvkhGLFeYsAO9N3hyphenhyphenifx1aXQwuJ-LAmFle0HKbOe_zsxG51es_sgVxZv0U-qMlE4EIkuXNIxvk9VRRXNVaQR98Zw/s1600/IMG_2633.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCEkIO8IfYFuwE0lLczIIBWYam8THyXobNTrsTgW2_U02mhhilXpfZvkhGLFeYsAO9N3hyphenhyphenifx1aXQwuJ-LAmFle0HKbOe_zsxG51es_sgVxZv0U-qMlE4EIkuXNIxvk9VRRXNVaQR98Zw/s200/IMG_2633.jpg" width="149" /></a></div>
Then came Myffy's first/last day at that new preschool program where they kicked her out for a 3 hour screaming fit on the very first day. After that we started the reassessment process and as we went through the parent/teacher/caregiver interviews and answered endless questions about her behaviors I had this very familiar sinking feeling that I'd had when we did this with Lu which was, my god, why didn't we do this sooner? It was so obvious as we filled out the forms that yes, more than likely she would qualify as autistic. But then I reminded myself that yes we did, we did do this sooner, we did it back when she was 16 months old and then put her into an Early Intensive Behavioral Intervention which is exactly why she has all the skills that she does.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIerdWJFBgY59zRfLKccR8aUAS0AaxFkQf1FvxbiPihgqTOsgMQ1hKRRJb4KZHIb2-i04RBqE3ltJDeQN-xNmhxDEt2XAB48zijHzE7lE90UJYfoI0ngUmYMx2A6aR3GjDMw2fIH7DFMQ/s1600/D+C.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIerdWJFBgY59zRfLKccR8aUAS0AaxFkQf1FvxbiPihgqTOsgMQ1hKRRJb4KZHIb2-i04RBqE3ltJDeQN-xNmhxDEt2XAB48zijHzE7lE90UJYfoI0ngUmYMx2A6aR3GjDMw2fIH7DFMQ/s200/D+C.jpg" width="200" /></a></div>
In the midst of all of this we kept in frequent communication with Brian from AZ Goldens about Lu and Dahanna and one of the problems that we kept running up against is that Myffy has gone completely dog crazy. She wants to constantly be in contact with Dahanna, she wants to hold the leash, she takes it form Lu, she is verbal enough to give the commands that she hears us giving Dahanna and in many ways it is interfering with Lu and Dahanna's work. Myffy has also started trying to interact with poor old Wheezy, our lovely English Pointer who deserves some peace and quiet in her old age.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1NDskg5sYT0jNAhD2CsADsliD8gPsunqm6BJzBYgBF-_09Pmigni48PuSIJ_XVl4GEXk8sLaIkr1eqAgG6okNUMUG_XkJQ6C_-3m1ZKryfYENK9BLMppGkNgTXdkCeELKZ_mhWv7cB0Y/s1600/Carol+steals+ball.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1NDskg5sYT0jNAhD2CsADsliD8gPsunqm6BJzBYgBF-_09Pmigni48PuSIJ_XVl4GEXk8sLaIkr1eqAgG6okNUMUG_XkJQ6C_-3m1ZKryfYENK9BLMppGkNgTXdkCeELKZ_mhWv7cB0Y/s200/Carol+steals+ball.jpg" width="180" /></a></div>
Brain came up to Flagstaff one weekend in July to bring up two dogs to meet a couple who wanted to adopt one of them. He dropped one of the dogs off with the couple and brought the other to our house so he could do some tune-up training with Dahanna before the start of school. The dog he brought with him is named Carol and there was an instant and amazing connection between her and Myffy. In much the same way that Myffy's personality is different from Lu's, so Carol's personality is different from Dahanna. Carol's energy is explosive, she will play throw and fetch all day long, and she elicited the most beautiful squealing giggles from Myffy. After they left we learned that the couple chose the other dog to adopt and that Carol was still looking for a new home.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIBZWRHKNi9_EmVWr1gdIUaWIMnNE2oaC7jV2aC8wzJ_4wPXLkA0SbghRHtvTdVAFyawHxW5_v6KpO-ECYuFu9UQO1m7dy6ulihhRkIhnAqDysa4Z3Pig6e3XFvLnq8Vn7FaY98up0oOQ/s1600/Myffy+giggle.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIBZWRHKNi9_EmVWr1gdIUaWIMnNE2oaC7jV2aC8wzJ_4wPXLkA0SbghRHtvTdVAFyawHxW5_v6KpO-ECYuFu9UQO1m7dy6ulihhRkIhnAqDysa4Z3Pig6e3XFvLnq8Vn7FaY98up0oOQ/s320/Myffy+giggle.jpg" width="212" /></a></div>
Fast forward a couple of months. After numerous discussions of what it would mean for our family and AZ Goldens deciding that since we have been so dedicated and diligent with Dahanna and Lu, they have allowed us to adopt Carol for Myffy! And while yes having 3 dogs does increase the crazy in our lives, we can see that this works for our kids, it only increases the crazy incrementally, and seeing Myffy this happy is worth a little extra crazy.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuwoRXTu7M4WVCuqvLpG2gR7G7btNotBcIG1HUlVHt7RoCgdP7pBePP59y1xQFTY4jq4ysVBPwl7pLY5h7ZDjPszynHggJmgO2oURFmxFSWMR3o-LijWSV6PkYtGauxOtL66G0npH_6fI/s1600/M+walking+C.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuwoRXTu7M4WVCuqvLpG2gR7G7btNotBcIG1HUlVHt7RoCgdP7pBePP59y1xQFTY4jq4ysVBPwl7pLY5h7ZDjPszynHggJmgO2oURFmxFSWMR3o-LijWSV6PkYtGauxOtL66G0npH_6fI/s320/M+walking+C.jpg" width="320" /></a></div>
Carol (who we have renamed Carebear) was originally trained as a wheel chair assistance dog, which means she constantly picks things up off the floor and brings them to us. Myffy thinks it's hilarious. Over the years she has done animal assisted therapy, but was never placed with a client because of personality mis-matches or for some other reason. Carol has not been specifically trained for autism or specifically trained for Myffy the way Dahanna was trained for Tallulah, but Myffy's needs are so different from Lu's and because we have already passed all of the training and certification requirements we are getting guidance from AZ Goldens on how to train Carol to Myffy's needs ourselves and don't have to do a whole new boot camp for her. She is certified in case Myffy needs her to go to school with her or out in public with her in the future, but we will tackle each of those issues once we get to them. For now we are happy to have Carebear here along with Dahanna and Wheezy as part of our wacky but happy family. Welcome Carebear!babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1tag:blogger.com,1999:blog-2756466903407524974.post-45625655110413168862012-08-24T21:30:00.000-07:002012-08-24T21:30:24.124-07:00Autism Service Dog Boot Camp<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioXXTVF-yYnI_7lxYmU-x_4SP4gB9ANDOBbjRm1ToFf7tVrn8CEnpkR0i6u9ymNX71MKxJ5qhg34iDECGKUidYT9kTJc5IPEPM_wgmBKnthSdOSofn7O5yFBdUHU4mBo8O6Td2Zh_lXg4/s1600/water+cover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioXXTVF-yYnI_7lxYmU-x_4SP4gB9ANDOBbjRm1ToFf7tVrn8CEnpkR0i6u9ymNX71MKxJ5qhg34iDECGKUidYT9kTJc5IPEPM_wgmBKnthSdOSofn7O5yFBdUHU4mBo8O6Td2Zh_lXg4/s400/water+cover.jpg" width="400" /></a></div>
I keep thinking that any day now I am going to have this magical day when I have lots of free time to go through all of the amazing photos that Brian from AZ Goldens took of Lu and Dahanna during the two week Boot Camp when he was in our house in June and then go back and write a really thorough and in depth post about how hard and frustrating and amazing and brilliant the whole experience was for us as a family and for Lu and Dahanna in particular. But days and weeks and months have passed now, and just in case I don't get around to doing the post I really want to do soon, I at least wanted to post this fantastic video that Brian put together from some of the footage and photos that he took while he was here. There was a lot more to boot camp than what is in this clip, and I do hope to write more about it soon, but for now I hope that this will give all those of you who helped us get Dahanna for Lu an idea of how much this has meant to us all:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/yaVgtx5VuGA?feature=player_embedded' frameborder='0'></iframe></div>
I told Brian that I thought AZ Goldens shouldn't advertise as just a service dog provider, they should let people know about all of the other things he does for the families they serve: service dog provider/trainer, personal photographer, handyman, consumer reports, family/marriage counselor, and much much more. I have really been floored by the level of service AZ Goldens provides and the true interest they take in the well being of their dogs and the families they are placed with. We have been so lucky to work with them and I would recommend them to anyone.babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-3184730912433167182012-08-08T08:06:00.000-07:002012-08-08T08:06:38.725-07:00The Trouble with Food Trials<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwDh_eDGIzfzGkCM9pni73r6UHdWuPjgwHDsStGeD2STLeHn5Evy1LLa9N0PTyQbm4l_pa2PYTFpaInVG1ioUvOm7byu_jCzb-PDfq2QEY4u2lj_rGMLHj9czThPUXZAJSWMJ1KPc3rzg/s1600/Lu's+button.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwDh_eDGIzfzGkCM9pni73r6UHdWuPjgwHDsStGeD2STLeHn5Evy1LLa9N0PTyQbm4l_pa2PYTFpaInVG1ioUvOm7byu_jCzb-PDfq2QEY4u2lj_rGMLHj9czThPUXZAJSWMJ1KPc3rzg/s200/Lu's+button.jpg" width="164" /></a></div>
It has been more than a year and a half since Lu was diagnosed with EE and had her feeding tube installed. Since then we have been slowly working our way through food trials one by one to find out which foods her eosinophils react to so we can eliminate those foods and rebuild a by-mouth diet. The ultimate goal is to be able to feed her enough food by mouth to sustain her and get her off of the feeding tube for good.<br />
<br />
Don't get me wrong, the feeding tube is a miracle that saved her life, got her back on the growth chart and put enough weight on her to help her look like any other kid a year or so younger than she actually is (rather than a survivor of famine), and for all of that I will forever be grateful. But now that she is going into kindergarden NEXT WEEK (pardon the capitals but I'm kind of freaking out) I want to get her to the point where she can sit down and eat lunch with the other kids instead of needing to be hooked up to the feeding tube.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiptq00dNBM6VNlpZGSKzwLriHPxFLR_l4iyhagJ0z8l4NYFOLodb6VxefljfkJziWysOIU2gkL_a3wfCfWANACQwfU6UbDwWn9miRghfc0ybzsLxASGze-dDmZ1TtDiNIYlKl4kIXUzRY/s1600/Lu+eating+yogurt.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiptq00dNBM6VNlpZGSKzwLriHPxFLR_l4iyhagJ0z8l4NYFOLodb6VxefljfkJziWysOIU2gkL_a3wfCfWANACQwfU6UbDwWn9miRghfc0ybzsLxASGze-dDmZ1TtDiNIYlKl4kIXUzRY/s200/Lu+eating+yogurt.jpg" width="155" /></a></div>
This won't be a problem this year because our team has decided that Lu will do half days of kindergarden so she can continue her intensive ABA Discrete Trial Teaching program at home in the mornings (this is where all of her skill acquisition has been going on all along), and then will attend school after lunch. So we do a tube feeding before she goes to school and another when she gets home from school, easy-peasy. But we are hoping that by the the following year, when she will be going to kindergarden for full days, that we will have found enough foods for her to be able/willing to eat a by-mouth lunch that will sustain her though the afternoon.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxgOrYM3NXVku6zG7x65QhEG3rnHMvtfm0CqeIes0itJlnrszgbTFmvruHk143-v1PXbh5QkmoERQ3cKtzTix_Cga9I54q6fZ_IPzJgS7a75o8lhR_9-_8OlCyix7Z1bPQSzXvbLMyCTs/s1600/Lu+eating+egg.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxgOrYM3NXVku6zG7x65QhEG3rnHMvtfm0CqeIes0itJlnrszgbTFmvruHk143-v1PXbh5QkmoERQ3cKtzTix_Cga9I54q6fZ_IPzJgS7a75o8lhR_9-_8OlCyix7Z1bPQSzXvbLMyCTs/s200/Lu+eating+egg.jpg" width="149" /></a></div>
The problem with the food trials is that so far, only egg and soy have gotten the ok from her GI doc. This summer has been a disaster of trying first dairy, then non-peanut tree nuts. It has been amazing and horrifying to watch the way the worst of the old autistic behaviors have come back in reaction to the foods. I've realize that so many of the odd stiff-muscled movements, hyper-active jumping, spinning, vomiting, the extreme levels of verbal noise-making (from the quieter moaning, whimpering, twittering, and throat sounds, to maniacal laughter/giggling, yelling and screaming), and even hitting her own head are all responses to internal pain. The most amazing thing has been that for the first time, she has finally been able to add in the telling and imploring "Ow!" when she looks at me and hits her forehead with her fist. And after seeing her recover and what she is like when she is not in pain, I feel we have finally confirmed that these are not just autistic traits that she does at random (like we were told they were), these are both her reactions to pain and her way of trying to tell me she is in pain. At one point the other night she even said 'help me'. Do I even need to say how badly I wanted to make it all go away? But all I could do was put some children's tylenol in her tube and hold her as she twisted and twitched and eventually fell asleep.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOrqt7H9oM6oXdEJdzaIYdH4ABPLNJVsspZSw606UsIzF8IJiSsA0fSS3txJNyvWH4OiqU6EcbpTiks6Jehk3jthovmOdDUl41GuqLOucU93MsCenZvTgo8mzhrJGUYHMpAzb0ddo3aP8/s1600/Lu+eating+toast.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOrqt7H9oM6oXdEJdzaIYdH4ABPLNJVsspZSw606UsIzF8IJiSsA0fSS3txJNyvWH4OiqU6EcbpTiks6Jehk3jthovmOdDUl41GuqLOucU93MsCenZvTgo8mzhrJGUYHMpAzb0ddo3aP8/s200/Lu+eating+toast.jpg" width="149" /></a></div>
It has been so measurable this summer, both with the dairy trail and the nut trial, the difference in sleep disturbance, self stimulatory behavior, attention, compliance, and even this small bit of self injurious behavior in hitting her own head, oh and the return of the terrible vomiting, that we just have not been able to go through the full 90 days to get to the endoscopy at the end of these food trails. We can see how badly she is reacting, so we stop. It's hard to believe a bit of inoffensive almond milk can have such and extreme effect on someone, but there you go. I just hope it all wears off before she has to start school next week.<br />
<br />
Just to clarify: I do not believe that changes in diet in any way 'cure' autism. However, I do believe that if a child has a condition like Lu's EE that causes pain which the child is unable to express verbally, and changing the diet removes that pain, then I do believe that it can affect some of the behavioral characteristics associated with autism. Thanks for hearing me out on that one.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifind4GN4tcE5M5n_fIdMcErWaCeC6XK3-WEHUIQ_MMJ6gbJkJvZrJwzouNVtPGL0_1sdYzs_aVy2QA2apq3be7bDotG_l0Vaezvs4Mp59-AcJ30Wm4mB8jPTp98hHmMvZ4hBxfhB8GNM/s1600/vitamix.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifind4GN4tcE5M5n_fIdMcErWaCeC6XK3-WEHUIQ_MMJ6gbJkJvZrJwzouNVtPGL0_1sdYzs_aVy2QA2apq3be7bDotG_l0Vaezvs4Mp59-AcJ30Wm4mB8jPTp98hHmMvZ4hBxfhB8GNM/s200/vitamix.jpg" width="149" /></a></div>
So where does this leave Lu's diet? Mainly fruits, veggies, meat (for Lu this means bacon), gluten-free grains (like rice- not that she eats rice but she can have rice milk, rice dream ice cream and rice flour), eggs and soy. And the things she can't eat: wheat, all gluten grains, dairy, all nuts, fish and shell fish. Now that she is finally sometimes showing something of an interest in the food the rest of us are eating, we have decided to all go gluten, dairy, fish and nut free. Though we may still sneak in a bit of sushi on a date night if we have a babysitter. For those of you who know me well, you know how hard it has been for me to give up my beloved fluffy, crusty loaves of fresh and fragrant sourdough, not to mention the occasional beautifully baked and layered butter croissant. And how hard it is for me to ever actually get my 5 fresh a day. I've been doing lots of experiments with the Vitamix to make drinks and soups that get us the nutrients we need. It's an on-going experiment. If anyone out there has suggestions for amazing allergenic recipes that kids will love please let me know. I'm only an ok cook and an even worse baker, but Stew and I are both pitching in to try to give this our all. Who knows, maybe we will manage to lose some weight and get healthier in the process. One can only hope.babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1tag:blogger.com,1999:blog-2756466903407524974.post-51001915040474180062012-07-21T10:39:00.000-07:002012-07-21T10:39:40.924-07:00How to get kicked out of preschool without even trying<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBrlEh82NVX0pncZkbHVdDtnG6xR-Up5rRW-6mujniGRAbiW40aRUdMuRqfmDpX8nRm-R-m54nzhRZVMtx9F-dJH79n7DxTeXy11cwrvlVsSxz3SSBwCZlNsivTtO5Xt6j83lofU3PbgI/s1600/Dahanna+&+Tallulah+(6-16-12)-+022.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBrlEh82NVX0pncZkbHVdDtnG6xR-Up5rRW-6mujniGRAbiW40aRUdMuRqfmDpX8nRm-R-m54nzhRZVMtx9F-dJH79n7DxTeXy11cwrvlVsSxz3SSBwCZlNsivTtO5Xt6j83lofU3PbgI/s320/Dahanna+&+Tallulah+(6-16-12)-+022.jpg" width="320" /></a></div>
Last Monday was Myffy's first day of school at a new preschool program. Her first day, and her last.<br />
<br />
I was excited. The place is called Gartendale and it is the kind of place you search around for and pick out and think this looks like a really great, loving, nurturing, fun kind of place for my very special, very sensitive little one to spend time with her peers. It's Waldorf inspired so it's all about woodlands and fairies and imagination with no academic goals at all for the preschool age. But they do require kids be potty trained, so we started potty training the day we finished taking our service dog boot camp practical test and passed (!!! I've been meaning to write a post on this but have 500 awesome photos to sift through and choose from so it's in the works).<br />
<br />
The intensive potty training week turned into two when we both got sick, again, and then to three weeks of us spending pretty much every minute of every day together, having fun but staying close to the potty. And she did it! I'm so proud of her. She loves picking out a book and going to sit on the potty now. I figured ok, she's all ready to go!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN-tmgsORQWqB-g6jzwFzjeN9DkMSq-pPkAEZMiblJlNC37JsUv93s2ZoUejARnWKTBBpKn3m1baj6A4A8VvtVGdcJFyfnJDc9l_1_Q6PiHJWXdG4gMRC9EzmnT3VIZ5jX6XXGpmQkHGE/s1600/Dahanna+&+Tallulah+(6-17-12)-+033.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN-tmgsORQWqB-g6jzwFzjeN9DkMSq-pPkAEZMiblJlNC37JsUv93s2ZoUejARnWKTBBpKn3m1baj6A4A8VvtVGdcJFyfnJDc9l_1_Q6PiHJWXdG4gMRC9EzmnT3VIZ5jX6XXGpmQkHGE/s320/Dahanna+&+Tallulah+(6-17-12)-+033.jpg" width="228" /></a></div>
We arrived early and I stayed with her for the first 45 minutes or so, walking her around, showing her the place. She remembered it from our visit a few months ago and immediately wanted to go outside to swing. When I left she got upset. I wasn't surprised. Changes to schedule and new environments are difficult for Myffy and our intense time together made it even harder for me to leaver her anywhere. I had warned the teacher about Myffy being in AZEIP, getting Early Intervention and the concerns we have about her behavior in terms of autism. She called after about an hour to let me know things were not going well. And then again about an hour and a half later. She suggested I come get Myffy now, which I thought was fine. We'll start with a short day and slowly work her up. We did that with Montessori too. What surprised me was that she and Myffy were sitting outside on a bench with the bag of Myffy's things in it when I got there. Including her tuition check.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1oiN2w7RvDxgVPgAiL8GMXGBprgiDQO342xieUd-EpRvxa1QjqIIanp32jlfxCoJf1ssX-neO4Pou87oO5nIknhYnXuKcge92VDxSRULZS2qxwd-Sz_RM5wGyJb5vZK5OFaCjIWUWRUU/s1600/secrets+profile.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1oiN2w7RvDxgVPgAiL8GMXGBprgiDQO342xieUd-EpRvxa1QjqIIanp32jlfxCoJf1ssX-neO4Pou87oO5nIknhYnXuKcge92VDxSRULZS2qxwd-Sz_RM5wGyJb5vZK5OFaCjIWUWRUU/s320/secrets+profile.jpg" width="212" /></a></div>
Flashback to trying to put Lu into another really lovely little montessori program at Bambini a bit before she was three. With that place we never even got to the tuition check. At our first visit the teacher very bluntly told me that Lu's needs were far too great for their staff to handle. At Bambini I was surprised because I knew of another autistic boy who went there and asked about it but was told that Lu's needs were far greater than his. I even offered to provide one of the habilitation workers from our home ABA program as a one-on-one aide at my own expense and still they refused.<br />
<br />
This was a surprisingly big blow. As parents we are the consumer in so many ways, always trying to find the best car seat and ways to diaper and feed our kids. We want the best toys to stimulate their curiosity and great books to instill a lifelong love of reading. With schools I felt like I was shopping for the very best school program to fit my children's needs. Instead it turns out the schools are shopping for the very best kids to fit their programs' needs. It looks like neither of my sweet, precious and totally awesome kids fit in.<br />
<br />
When this happened with Lu I broke down and cried right there right in front of the teacher. I was still so raw from the diagnosis, still so scared and so uncertain. With Myffy I managed not to cry until I had driven away, but it was still a shock. Myffy is so good at passing for normal so much of the time. Thanks to spending the past 19 months doing 3 hours a day 5 days a week of intensive one-on-one behavioral intervention, her verbal and conversational skills have skyrocketed. She is potty trained before three, she can sing her ABCs and count to 10 and knows her colors. In a couple of areas she has now surpassed Lu in skill acquisition, which is both awesome and heartbreaking at the same time. I can't tell you the number of people who have spent an hour or two with Myffy and declared her completely normal and asked me what am I worried about. And I am so proud of her for all of her accomplishments. I know that the people who think she is totally fine are being nice and complimentary, but I also want to acknowledge what she's been through. I saw the early signs of regression. I saw it when she lost eye contact, when she stopped turning to her name, when she became unresponsive to all requests and stopped using words that we knew she could use. I saw it when normal baby crying/upset turned into the neurological force of nature style meltdowns that become completely detached from their trigger and can easily last three hours at a time. Because the thing about my two kids is that while Lu can pass for typical only for short periods of time when she is at her very best- calm and happy, playing quietly, not stimming or flapping or pattern walking and no one places any demands on her; Myffy passes most of the time and only doesn't pass at her very worst.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX3hYsHVaKqvYA_bA3ziMHdOCmkuCRAy9mAnbXu34om6L_MPneT4J3vUOmAbJ5l7ugpeGoUSj5YloSNVoqr7ZUW5hpht2iAeuVcxUXfmR5k7Zj9uvl_WXVAFBrlv_nlxheE40jNuUNPEY/s1600/Dahanna+&+Tallulah+(6-17-12)-+034.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="244" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX3hYsHVaKqvYA_bA3ziMHdOCmkuCRAy9mAnbXu34om6L_MPneT4J3vUOmAbJ5l7ugpeGoUSj5YloSNVoqr7ZUW5hpht2iAeuVcxUXfmR5k7Zj9uvl_WXVAFBrlv_nlxheE40jNuUNPEY/s320/Dahanna+&+Tallulah+(6-17-12)-+034.jpg" width="320" /></a></div>
I do get it. I get why these schools don't want them. I know my kids. I know the difficulty of handling their behaviors when they have problems. We even have special names for some of them:<br />
<br />
wobbler: a major and extended meltdown<br />
baby pterodactyl: the high-pitched scream that blows Stew's hearing aid<br />
riding the motorcycle: a funny stiff-muscled arm motion Lu did in the crib that developed into flapping<br />
spinny-spin: incessant spinning, usually under a ceiling fan or florescent light<br />
doodley: verbal stimming (repetitive babble)<br />
<br />
When things are hard to talk about, sometimes it helps to try to make up your own code for talking about them. I guess I just thought that what I have learned to deal with at home, surely education professionals have strategies for dealing with in their classrooms. But this really isn't true. I look at all of the college students that are currently in and have passed through Team Tallulah (our home-based ABA therapy program), receiving extensive training in Applied Behavior Analysis through our BCBA in Discrete Trial Teaching and training in Pivotal Response Teaching through sessions at the Southwest Autism Research and Resource Center with Lu in Phoenix and I can't help thinking that these girls have so many more tools and skills for dealing with behavioral challenges than your average teacher, especially at a private school with no special education program. I am excited for all of them to go on to their future careers with this knowledge and really make a big difference in their fields and in the lives of other special children.<br />
<br />
In the end this experience has made me feel really appreciative of our pretty amazing public school system and the montessori that Myffy has been attending for the past year. Public Schools don't have the luxury of rejecting kids who have challenges and who will require more time and more resources in order to access the same education that typical kids can access on their own. Lu's experience in the Flagstaff Unified School District so far has been extremely positive and supportive and continues to be as we head towards kindergarden with a full time, ABA trained one-on-one aide and a service dog in tow. And even though I have felt that Myffy has not been entirely happy at her current school (she refuses to speak there and is always off on her own in a corner when I go to pick her up) and that the teacher/student ratio is too high for her needs, I still appreciate that they have at least been willing to have her in their with all of the rest of her peers and have allowed her the time to adjust to schedules and learn routines. Of all categories Myffy scores lowest on social skills and desperately needs access to typical peers as models and to learn appropriate interactions. If the only kid she ever interacts with is Lu she will only learn about Lu's way of interacting with her.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhakEqslVnCsHUvI7fO1ENJ4LAItMi_XrxZSfJqrfwPoQoz1L28NK1RFSt2zY9BexnUXA1O9H6Cgbzm6m1dTdujiuiznemxp9ZNmxJml9UK-tuvdWRfaHGyMchcedRYUk9EZJUNvs1CaRg/s1600/Dahanna+&+Tallulah+(6-17-12)-+035.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhakEqslVnCsHUvI7fO1ENJ4LAItMi_XrxZSfJqrfwPoQoz1L28NK1RFSt2zY9BexnUXA1O9H6Cgbzm6m1dTdujiuiznemxp9ZNmxJml9UK-tuvdWRfaHGyMchcedRYUk9EZJUNvs1CaRg/s320/Dahanna+&+Tallulah+(6-17-12)-+035.jpg" width="201" /></a></div>
Myffy will be having a transition meeting with the school district before she turns three in September and ages out of the Arizona Early Intervention Program. We have decided to have her re-assessed by Lu's diagnosing psychologist before that meeting. She already has the categorization of "At Risk for Autism" because of displaying regressive markers at 16 months old and having a sibling with a diagnosis of autism, but now that her behavioral issues have become barriers to her attending schools and interacting with peers we want to make sure we are able to provide her with the right supports moving forward in school. Her current school has brought up issues of self control and regulation (tantrums), rigidity of routine (not able to adjust when something unexpected happens), lack of spontaneous speech and repetitive behaviors. Everyone who interacts with her on a daily basis agrees that she is doing great all things considered, but that she does still have some significant challenges to overcome. And like we with Lu, we are determined to get her the supports she needs to overcome those challenges as much as possible.<br />
<br />
<br />babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com2tag:blogger.com,1999:blog-2756466903407524974.post-36394548243850571982012-06-09T09:13:00.000-07:002012-06-09T09:13:19.971-07:00Dohanna Day!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0a8OZ_MFFO1I_Se0LtfhpklJ9WBwBmMmTcF7k_JPebRAkbGJ9-bm5xsq55pdWzg1-DzlT7VDQj6iXgGw7Z7E6TyWpSHuye9SAWUqHPqEBCbg7W1M4d3NzzuLNjso9l88VLP0eKTgOZZc/s1600/T+and+D+on+grass.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0a8OZ_MFFO1I_Se0LtfhpklJ9WBwBmMmTcF7k_JPebRAkbGJ9-bm5xsq55pdWzg1-DzlT7VDQj6iXgGw7Z7E6TyWpSHuye9SAWUqHPqEBCbg7W1M4d3NzzuLNjso9l88VLP0eKTgOZZc/s200/T+and+D+on+grass.jpg" width="148" /></a></div>
Today is the day! Dohanna Day! Dohanna should be arriving at about 10am to see her new home, meet her new housemate Wheezy, and start to settle in. I am so excited. It seems like it has been such a long journey getting here, first getting used to the idea of a service dog, learning all about the benefits, thinking the cost was out of our reach, getting the prescriptions and letters of medical necessity, filling out all of the applications and being accepted, fundraising, being shocked by the amazing, overwhelming response of friends, families and generous strangers, raising the full amount in just over 3 months, meeting all the amazing dogs in order to get the very best match for Lu, and now finally, here we are, the day we get Dohanna. Dohanna Day! I can see us celebrating June 9th every year just like a birthday.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigq5QqdUW3o-n3L-3iOUOSlMkIkuHDErsO3-lKStjXdlCSJhEdi60e69uuL1OHPEstdV5WU05h2a77W0jXrZEu1vN221F5N4AWInQKI4USdhht3-rQrQqHjwhSuRYBCS01fA18255aGG8/s1600/T+and+D+in+car.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigq5QqdUW3o-n3L-3iOUOSlMkIkuHDErsO3-lKStjXdlCSJhEdi60e69uuL1OHPEstdV5WU05h2a77W0jXrZEu1vN221F5N4AWInQKI4USdhht3-rQrQqHjwhSuRYBCS01fA18255aGG8/s200/T+and+D+in+car.jpg" width="200" /></a></div>
I think Lu is excited too. We have been talking to her about Dohanna some, but not too much because when we were last in Phoenix for her week at SARRC we told her one evening that Dohanna was coming to visit her at the hotel and Lu wanted to see her so much that very minute that, well this happened:<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxg3uz93IVF-4au2NzKUvvxoHFywwF89Xdhk6JWHFu48I3jxmhb3xx7GnhX9b46qtMSJOlFkdoc7se6jjc26w' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
And then this:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzEaAPtv2Q-fQa58Ja6DvPnJgstascID9a9P04UVZJ0jZTDJov9n_1UK3iJGWq6RQw3Rz33sE1Yb9aaJnVwVQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<br />
<br />
I wanted to take a video of it because other than wanting her Mom or her Dad when something sad or scary was going on (like the hospital or feeling sick) I have never heard her ask over and over for anyone. She didn't tantrum or scream, she was just weeping and calling for Dohanna again and again. It was so sweet and heartbreaking and helped me to feel sure that this really is a good match. Tallulah was longing to be with Dohanna.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVK8rnu-ae8fZ1kHakhX1k8Vwp2w_vNF3DrDuaUuzWxtT_PRoUS24tZQ92rxbXg7nZ-24iLw6SqYhczF7jyp3BWN6GiNs6LjlXcueQ18M6CRd4erPw6F5sAXd4nvdkXWJnSn5CJ8W6QRM/s1600/M+and+D+lying+down.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVK8rnu-ae8fZ1kHakhX1k8Vwp2w_vNF3DrDuaUuzWxtT_PRoUS24tZQ92rxbXg7nZ-24iLw6SqYhczF7jyp3BWN6GiNs6LjlXcueQ18M6CRd4erPw6F5sAXd4nvdkXWJnSn5CJ8W6QRM/s200/M+and+D+lying+down.jpg" width="149" /></a></div>
And Myffy seems to be pretty down with Dohanna too! We will all be spending the next two weeks in Service Dog Boot Camp where we will learn to be service dog handlers and trainers. This is the last hurdle because if we don't pass the tests at the end of the training period, we do not get to keep Dohanna! But we will study and work hard and make sure that we pass because we have come way too far to not keep our girl at this point! I'll try to post some photos and videos as we go along so stay posted!<br />
<br />
And thanks again to all of the many wonderful people who have made all of this possible with your donations and support. We love you!<br />babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-48827311287959657562012-05-26T13:18:00.001-07:002012-05-26T13:18:09.199-07:00My Big 5 Year Old Girl!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy3oWa5nK98d9kly8JFyPfA0tBAf_ziCc3-lfzkOmNh04HIukRA-hcl3IV03yOZGi1qZjYk4u4vUkjs_qL16wanp8KtyAl0KyMlnuRUD3jzuFy-Xu7S6Pa08adFf-Y5jDPeCFzniUGevc/s1600/Lu+eating+soup.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy3oWa5nK98d9kly8JFyPfA0tBAf_ziCc3-lfzkOmNh04HIukRA-hcl3IV03yOZGi1qZjYk4u4vUkjs_qL16wanp8KtyAl0KyMlnuRUD3jzuFy-Xu7S6Pa08adFf-Y5jDPeCFzniUGevc/s200/Lu+eating+soup.jpg" width="149" /></a></div>
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:Zoom>0</w:Zoom>
<w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery>
<w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery>
<w:UseMarginsForDrawingGridOrigin/>
</w:WordDocument>
</xml><![endif]-->
<!--StartFragment--><span style="color: #262626; font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">A lot has been going on around the
Turrell/Anderson house lately. We got the results back from Lu's last endoscopy
and while she did have a few eos (1 in one screen, 2 in another and 4 in
another) our GI doc says that anything under 15 per screen is considered to be
within normal limits so Lu has been cleared to continue eating eggs and move on
to a new test food. We decided to go for one of the big guns: dairy. I was pretty
excited to be able to give her back dairy for her birthday. Of course the
doctor warned us that if she has a strong reaction it could ruin her birthday,
so we eased into it by starting with chocolate pediasure (which includes a
modified version of cow's milk for the lactose intolerant). This used to be
about half Lu's daily diet back before her diagnosis, and if she is able to
drink this by mouth again it could take us a long ways towards getting her off
of the tube eventually. Was she happy to have her choc-milk back? Oh my
goodness was she! And she seems to suddenly be a little bit more interested in
eating other foods too. Here she is eating the miso soup with tofu that she
used to eat a lot but hasn't wanted in ages. She requested it while she was already
doing a feed and ate quite a lot.</span><!--EndFragment-->
<br />
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span><br />
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:Zoom>0</w:Zoom>
<w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery>
<w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery>
<w:UseMarginsForDrawingGridOrigin/>
</w:WordDocument>
</xml><![endif]-->
<!--StartFragment-->
</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSjNOnfQhp8vQ4nC8R0142U8WjryJBE9cMYkrH1hYGhUdluOgq72Mjvvrlz4bdWRpjeqV-LIxIc0tEHA6MThwau8w2iPrZ10uJOA_DalfVtWzOYHhGwdFo8OSsqL3WVQw7jtnXnHsk0QA/s1600/Lu+swing.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSjNOnfQhp8vQ4nC8R0142U8WjryJBE9cMYkrH1hYGhUdluOgq72Mjvvrlz4bdWRpjeqV-LIxIc0tEHA6MThwau8w2iPrZ10uJOA_DalfVtWzOYHhGwdFo8OSsqL3WVQw7jtnXnHsk0QA/s200/Lu+swing.jpg" width="149" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;">Here she is at her Birthday Party drinking chocolate pediasure while
taking a break from the pool and the trampoline.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="color: #262626; font-family: Helvetica; font-size: 11.0pt;">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:Zoom>0</w:Zoom>
<w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery>
<w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery>
<w:UseMarginsForDrawingGridOrigin/>
</w:WordDocument>
</xml><![endif]-->
<!--StartFragment-->
</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiTPYLVnONaQdTJGAwoAK0GK290OG8kSq7naPgTzUjhBShGNaQ2Ul3JNG6Edb2vWnm6ypOyYI9A_8WTI4MgDcZu7iOV66seZlPcsodsdqwVWKOTgD4LquwiAXOSq54U05FHIB-7iPTMbQ/s1600/kids+in+pool.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiTPYLVnONaQdTJGAwoAK0GK290OG8kSq7naPgTzUjhBShGNaQ2Ul3JNG6Edb2vWnm6ypOyYI9A_8WTI4MgDcZu7iOV66seZlPcsodsdqwVWKOTgD4LquwiAXOSq54U05FHIB-7iPTMbQ/s200/kids+in+pool.jpg" width="149" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;">I'm
so glad that it is finally warm enough for the kids to be able to go in the
pool in the back yard. Both kids absolutely love it and would stay in there all
day and all night if we would let them.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjetUQKmV1lmFB3QB6LqDsU_GIFQF8lNK33APh0T58_UE6TztY84v6OT5jeHu31oNGCyH8n4PF3H5nvr9sltBCELewddFi5Ez-ydyy7jYsrGBSz3gZ1a-31ErF7dNX-b7fIYhDAZNZaFuo/s1600/bday+party.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjetUQKmV1lmFB3QB6LqDsU_GIFQF8lNK33APh0T58_UE6TztY84v6OT5jeHu31oNGCyH8n4PF3H5nvr9sltBCELewddFi5Ez-ydyy7jYsrGBSz3gZ1a-31ErF7dNX-b7fIYhDAZNZaFuo/s200/bday+party.jpg" width="196" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:Zoom>0</w:Zoom>
<w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery>
<w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery>
<w:UseMarginsForDrawingGridOrigin/>
</w:WordDocument>
</xml><![endif]-->
<!--StartFragment--><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">One of the most exciting things about Lu's 5th Birthday
party is that for the very first time since before her regression and diagnosis
she spent an entire party out with the gang and never once retreated to the
bedroom to give herself a break. She greeted people as they came when we
prompted and said good bye as each guest left, she seemed happy to have other
kids in the pool with her, eating with her at her table and jumping on the
trampoline with her. It was fantastic! I really hope that being 5 is going to
usher in a new era of Lu's heightened sociability.</span><!--EndFragment-->
</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmpqSmbgRju90oV9byArV4BO7r4iddA07ledR7HfiCk9NQgzp0FIVVj6IoNezYpKwd94QBnRivACv7N9Ni7dALYUmaK3va-7O0Sl3ykWovPbRXZn1Ro-u7zpl5PN_sa4RxSuC77we4eXA/s1600/Lu+Lounging.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmpqSmbgRju90oV9byArV4BO7r4iddA07ledR7HfiCk9NQgzp0FIVVj6IoNezYpKwd94QBnRivACv7N9Ni7dALYUmaK3va-7O0Sl3ykWovPbRXZn1Ro-u7zpl5PN_sa4RxSuC77we4eXA/s200/Lu+Lounging.jpg" width="149" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:Zoom>0</w:Zoom>
<w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery>
<w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery>
<w:UseMarginsForDrawingGridOrigin/>
</w:WordDocument>
</xml><![endif]-->
<!--StartFragment--><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">When she got tired and needed to rest for a bit she
just curled up in her little lounger and watched everyone for awhile. We didn't
even have to use a tv or iPad to convince her to stay in the same area as
everyone else, which we usually have to do if we want her to sit down and hang
out with a group of people. She just seemed so casual and so comfortable. I don't think she got upset even once.</span><!--EndFragment--></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo2w4DptQ7Wlw9Cbegx-LUIv-FGsi5IdwUSiEVgfOSUyhGdL3xHFIzCmI7S7ofHgcBj_mgyc9f9439tgXLigWD1vwqZttiLPMZkKKmTq0dAEvD6QIRck0ADPMXsrtSAWBtbgJzdohVSNM/s1600/Dani+and+Lu+trampoline.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo2w4DptQ7Wlw9Cbegx-LUIv-FGsi5IdwUSiEVgfOSUyhGdL3xHFIzCmI7S7ofHgcBj_mgyc9f9439tgXLigWD1vwqZttiLPMZkKKmTq0dAEvD6QIRck0ADPMXsrtSAWBtbgJzdohVSNM/s200/Dani+and+Lu+trampoline.jpg" width="149" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:Zoom>0</w:Zoom>
<w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery>
<w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery>
<w:UseMarginsForDrawingGridOrigin/>
</w:WordDocument>
</xml><![endif]-->
<!--StartFragment--><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">Tallulah's cousin Danica has always been one of her
favorite people on the planet. Even through Lu's most anti-social times she
has almost always had at least one hug for Danica when they saw each other, and usually a lot more than
that. On this day she couldn't seem to get enough Danica time in.</span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><br /></span></span></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:Zoom>0</w:Zoom>
<w:DisplayHorizontalDrawingGridEvery>0</w:DisplayHorizontalDrawingGridEvery>
<w:DisplayVerticalDrawingGridEvery>0</w:DisplayVerticalDrawingGridEvery>
<w:UseMarginsForDrawingGridOrigin/>
</w:WordDocument>
</xml><![endif]-->
<!--StartFragment-->
</span></span></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg182eodGOJP5XKjpz76bEjTbZTs1QtI7FsuRoaLmicmqadvJkX-566imIc63LA3PvAAqK7qCvD10qr8QF6-P-nimg8m3Rp_yOaCswVNHuM7gBki3wBC0MQZvIKW-0OxzQwMpxzibiMSmY/s1600/Eclipse+Shadows.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg182eodGOJP5XKjpz76bEjTbZTs1QtI7FsuRoaLmicmqadvJkX-566imIc63LA3PvAAqK7qCvD10qr8QF6-P-nimg8m3Rp_yOaCswVNHuM7gBki3wBC0MQZvIKW-0OxzQwMpxzibiMSmY/s200/Eclipse+Shadows.jpg" width="160" /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;">For
a moment I was a little sad that she didn't want anything to do with any of the
amazing allergen adjusted cake and ice cream that we were able to get from the
bakery at our local health food store, but hey, you can't have everything. And
the truth was that she was too busy jumping and hanging out in the pool that
she didn't want to take a break even for cake and ice cream. Whatever. She had
fun. And that's all that counts. And right around 6:30pm the awesome day was
rounded out by a solar eclipse. Awesome! <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;">We
didn't go crazy with gifts this year, mainly because in a few short weeks, on
June 8th, Lu will be getting her Autism Service Dog. Thank you so much again to
all of the wonderful people who donated and helped pass on the word about our
fundraising project. We raised the money faster than we could ever have hoped
and Lu and her dog will definitely be ready to go to school together in the
fall. This is the best Birthday present we could ever have hoped for her and
it's all thanks to our wonderful family and friends. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;">Stew
and I have finally decided to join the 21st century by making a real honest to
goodness mailing list through Mail Chimp instead of always trolling through our
hotmail and yahoo contacts list trying to remember, was this someone who bought
a cd once? Or someone we met at that autism conference? Most of you will
probably be getting a first mailing from us very soon if we have your email
address from dog donations or music and etsy mail orders. If you want to make
sure that you are on the mailing list you can subscribe below and expect
periodic updates on Boot Camp with the dog, any new music projects in the
future, and whatever else we get up to. Don't worry, we won't be filling your
inbox with emails every day or anything. We mainly just want to make sure that
everyone who donated $25 or more gets the Thank You cd Stew made and that we
can update you on progress. Thanks for reading. Thanks for supporting us and
the kids.<o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><!--
Begin MailChimp Signup Form --><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><link href="http://cdn-images.mailchimp.com/embedcode/slim-081711.css" rel="stylesheet" type="text/css"></link><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><style type="text/css">
<o:p></o:p></span></p>
<p class="MsoNormal" style="text-align:justify;mso-pagination:none;mso-layout-grid-align:
none;text-autospace:none">
<span style="font-size:11.0pt;font-family:Helvetica"><span style="mso-tab-count:1"> </span>#mc_embed_signup{background:#fff;
clear:left; font:14px Helvetica,Arial,sans-serif; }<o:p></o:p></span></p>
<p class="MsoNormal" style="text-align:justify;mso-pagination:none;mso-layout-grid-align:
none;text-autospace:none">
<span style="font-size:11.0pt;font-family:Helvetica"><span style="mso-tab-count:1"> </span>/*
Add your own MailChimp form style overrides in your site stylesheet or in this
style block.<o:p></o:p></span></p>
<p class="MsoNormal" style="text-align:justify;mso-pagination:none;mso-layout-grid-align:
none;text-autospace:none">
<span style="font-size:11.0pt;font-family:Helvetica"><span style="mso-tab-count:1"> </span>
We recommend moving this block and the preceding CSS link to the HEAD of your
HTML file. */<o:p></o:p></span></p>
<p class="MsoNormal" style="text-align:justify;mso-pagination:none;mso-layout-grid-align:
none;text-autospace:none">
<span style="font-size:11.0pt;font-family:Helvetica">
</style><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"></span></div>
<div id="mc_embed_signup">
<o:p></o:p><br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"></span></div>
<form action="http://blogspot.us5.list-manage.com/subscribe/post?u=07e7dd5883be5c127f2d8b6af&id=08d880783a" class="validate" id="mc-embedded-subscribe-form" method="post" name="mc-embedded-subscribe-form" target="_blank">
<o:p></o:p><br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="mso-tab-count: 1;"> </span><label for="mce-EMAIL">Subscribe to our mailing list</label><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="mso-tab-count: 1;"> </span><input class="email" id="mce-EMAIL" name="EMAIL" placeholder="email
address" required="" type="email" value="" /><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="mso-tab-count: 1;"> </span></span></div>
<div class="clear">
<input class="button" id="mc-embedded-subscribe" name="subscribe" type="submit" value="Subscribe" /></div>
<o:p></o:p><br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><o:p></o:p></span></div>
</form>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"></span></div>
</div>
<o:p></o:p><br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<br /></div>
<span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><!--End
mc_embed_signup--></span><!--EndFragment-->
<br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: justify; text-autospace: none;">
<span style="font-family: Helvetica; font-size: 11.0pt;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><span style="font-family: Helvetica; font-size: 11.0pt; mso-ansi-language: EN-US;"><!--EndFragment-->
</span></span></span></div>
<!--EndFragment--><br />
<!--EndFragment-->babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-75661410996782863452012-05-11T22:00:00.000-07:002012-05-11T22:00:15.802-07:00Another Endoscopy and Another Dog<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmBvZyGcwTXDPfqBQ58BHbcqzOGe06GPVMgHJjCRxtznbw5XolPYBwHPtvejbJX8jz4UAYRDDGF2sbTdK10DPdJ-97h1D09BlMSyBAop27UePSlb8fENFoO1q5Ubu6xGI5eZv1dY_pvEk/s1600/pretty+girls.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmBvZyGcwTXDPfqBQ58BHbcqzOGe06GPVMgHJjCRxtznbw5XolPYBwHPtvejbJX8jz4UAYRDDGF2sbTdK10DPdJ-97h1D09BlMSyBAop27UePSlb8fENFoO1q5Ubu6xGI5eZv1dY_pvEk/s320/pretty+girls.jpg" width="213" /></a></div>
What? May already? Where did April go? April was Autism Awareness month, and while I was really aware of it and helped organize the Northern Arizona Conference on Autism Spectrum Disorders and had Lu's Transition to Kindergarden IEP and Myffy's Transition to pre-school IFSP meetings, and lots of other things going on, I never did manage to blog about any of it. Sometimes doing gets in the way of writing and thinking and it's probably a good thing some of the time. So anyway, yesterday the girls and I were in Phoenix for Lu to at long last have another endoscopy with biopsies to determine whether or not eggs have been causing her EE reactions (should have the results some time next week) and while we were there Lu met another awesome Service Dog! The lovely young lady dog posing in these photos with Lu is Dohanna. <br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3MqHHFRASSIm_eUAUgKQTD3Sd0C-fTDjFtogicjlWoxHn1jF9jQMW_z-XU6PfonyMbYNzy2c32jORA07bspt9DodDqMlno_1pZi4qHekN0_zIeX3X2S26s1Tiwctg4M2c0EAbmpg3Dt0/s1600/squirrel%253F.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3MqHHFRASSIm_eUAUgKQTD3Sd0C-fTDjFtogicjlWoxHn1jF9jQMW_z-XU6PfonyMbYNzy2c32jORA07bspt9DodDqMlno_1pZi4qHekN0_zIeX3X2S26s1Tiwctg4M2c0EAbmpg3Dt0/s320/squirrel%253F.jpg" width="320" /></a></div>
Early morning at the hospital was rough, but Lu had an awesome day after she woke up from her endoscopy. We went back to the hotel room like we usually do and I hooked her up for a small feed of pedialyte to help hydrate her. I expected her to fall asleep during the feed and then throw up the way she usually does after having all of those tubes put down her throat, but instead she stayed awake, perked up and wanted some chips. And then some cookie. And then some pizza! We found a Picazzo's that makes gluten and dairy free pizza and even had gluten and dairy free brownies and ice cream, so we went. It was the first time Lu had hung out in a restaurant for a very long time. She never did eat the pizza, but she had a little brownie and ice cream and only got up and ran around a couple of times. It was really encouraging.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik-iZYpFhQB0HTBcfT51K3O8l5rK90D9sI2Vx5yeo0AVo_KcbZvCC0fiAPqBpfPb6g8Hc8Jrzt5kyD-8nCk7j8Axq2aAo8SO7dMfPjDOf8BIbo48SqS-hvvIaBo3tw9c74I7wvLmlEoag/s1600/reading.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik-iZYpFhQB0HTBcfT51K3O8l5rK90D9sI2Vx5yeo0AVo_KcbZvCC0fiAPqBpfPb6g8Hc8Jrzt5kyD-8nCk7j8Axq2aAo8SO7dMfPjDOf8BIbo48SqS-hvvIaBo3tw9c74I7wvLmlEoag/s320/reading.jpg" width="213" /></a></div>
Afterwards we went back to the hotel and met up with Brian from Arizona Goldens who brought over Dohanna for Lu to meet. Dohanna is lovely, pale golden, very quiet, attentive and still. Lu asked to walk dog as soon as they came into the hotel room and considering how long Lu had been up and how much she had gone through that morning at the hospital I was incredibly impressed with how well she did. Just look at the pictures of these two hanging out and interacting!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJMATSe2wd5zREg4tRhw9pX0_f3JFKBv4KFQWy3q7QajYoLNmHuobhakYlGHYlESnTFrtZPwauHUgYE5XkggNCms1pNiHofwa2-Y0otLW4oBEypLVBjk_iKEsmoaPGn3C8VX3fy4e-rBg/s1600/Hi+Dohanna.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJMATSe2wd5zREg4tRhw9pX0_f3JFKBv4KFQWy3q7QajYoLNmHuobhakYlGHYlESnTFrtZPwauHUgYE5XkggNCms1pNiHofwa2-Y0otLW4oBEypLVBjk_iKEsmoaPGn3C8VX3fy4e-rBg/s320/Hi+Dohanna.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrw1OoCDWMwER2cDf9DZ5Y4_d1W5GItcDXhAc483HItMj1cmVXJ_i1FzAYXJW7THdimkv_GSbkDD3BBuej_fdnsPBOEGcjGmH1-2ru8vx-H4DtfqHqyA2HecCecfQLetM7zXWXRCEABuI/s1600/Tired+Girls.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrw1OoCDWMwER2cDf9DZ5Y4_d1W5GItcDXhAc483HItMj1cmVXJ_i1FzAYXJW7THdimkv_GSbkDD3BBuej_fdnsPBOEGcjGmH1-2ru8vx-H4DtfqHqyA2HecCecfQLetM7zXWXRCEABuI/s320/Tired+Girls.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga4sh1zIB6DonK87u1Cx9Cp9OFETWHPQS74PmYwLv_NF_Oa0bkTAEnNuovriUeUopCwngeoheXA9irVvhMwsWZo6GkEeQC32zcTGB0CkKuV4vDKeqkK8KA7VhTzDtSaPZ36UQkSphku9U/s1600/Bed+Kiss.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga4sh1zIB6DonK87u1Cx9Cp9OFETWHPQS74PmYwLv_NF_Oa0bkTAEnNuovriUeUopCwngeoheXA9irVvhMwsWZo6GkEeQC32zcTGB0CkKuV4vDKeqkK8KA7VhTzDtSaPZ36UQkSphku9U/s320/Bed+Kiss.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3OX-4fm8WU-z1bmL3K6C8Ayr-UJkazKknscGa733GeB4q1lrP7gI9bKv7Gz5IQTLgz8T7SKPxjElwsy4Gwf7zMnAE8rvUn4IT7DA6zyX2FWtkH0ACfd8vaUbIAuv0IPFyfRbxyJHRVOU/s1600/HappyLuBW.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3OX-4fm8WU-z1bmL3K6C8Ayr-UJkazKknscGa733GeB4q1lrP7gI9bKv7Gz5IQTLgz8T7SKPxjElwsy4Gwf7zMnAE8rvUn4IT7DA6zyX2FWtkH0ACfd8vaUbIAuv0IPFyfRbxyJHRVOU/s320/HappyLuBW.jpg" width="213" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUxiLeM9Kk9ysTBsNjF_r303BSiI3lWjrO7lYm_XDi9Oubb-L48C0KqJSQvGgkS4aY9tKnHcA8bLXz-2nrsTPu99-f3TVb_xuvVvA8aYFmkkfBk0Sm40x2M6SzyKKE18M26gWTzXuyg6E/s1600/Swimsuit+kiss.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUxiLeM9Kk9ysTBsNjF_r303BSiI3lWjrO7lYm_XDi9Oubb-L48C0KqJSQvGgkS4aY9tKnHcA8bLXz-2nrsTPu99-f3TVb_xuvVvA8aYFmkkfBk0Sm40x2M6SzyKKE18M26gWTzXuyg6E/s320/Swimsuit+kiss.jpg" width="213" /></a></div>
<br />babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-8328040275164944762012-03-23T09:13:00.000-07:002012-03-23T09:13:44.850-07:00Adjusting Expectations<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdJSLRzd-3dKGRhEIMtbjJnBsvr2CdEBK-YT7x9f154qXMSlwR7XsfeUmAmEUGkSbdBS2BOJ4FXXQuUTgxnZFmBRrixkZ9PLX1hv1idfrpqX0HUsTkKjNC3lggyHgWL4piEb-UDTI1lBk/s1600/Pinkdress.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdJSLRzd-3dKGRhEIMtbjJnBsvr2CdEBK-YT7x9f154qXMSlwR7XsfeUmAmEUGkSbdBS2BOJ4FXXQuUTgxnZFmBRrixkZ9PLX1hv1idfrpqX0HUsTkKjNC3lggyHgWL4piEb-UDTI1lBk/s200/Pinkdress.jpg" width="132" /></a></div>
Today is the 2 year anniversary of Lu's diagnosis of Autism and MR. Autism is hard enough on it's own but I find myself writing the initials MR because it is even harder to write the words those initials stand for. I guess it's just part of my cultural conditioning to not want to associate words that are tossed around as casual insults with my sweet and precious daughter, but there they are, right there in black and white on her diagnosis. Despite the fact that the Department of Mental Retardation has changed its name to the Department of Developmental Disabilities, and in all other references she is referred to as being Developmentally Delayed or some other much softer sounding term, still she has the words Mental Retardation on her diagnosis. Sigh.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIFL-J0YOtEJpxygK1yN1dygC1gTC5HLheIESLf2ziNdCYS6QrbNfs6u9cgeW2fGidSpHxZ7vC_LTnsRLdsU-KIbwDBvmL2gPtjvC0DMBkMWioAeVlhs0U6RKEI2eND-8f5S-Vw5jkG_8/s1600/Drawing.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIFL-J0YOtEJpxygK1yN1dygC1gTC5HLheIESLf2ziNdCYS6QrbNfs6u9cgeW2fGidSpHxZ7vC_LTnsRLdsU-KIbwDBvmL2gPtjvC0DMBkMWioAeVlhs0U6RKEI2eND-8f5S-Vw5jkG_8/s200/Drawing.jpg" width="149" /></a></div>
Of course all it means is that her mental age is younger than her physical age. Which is true. For the time being. She continues to work hard and progress and she kicks ass in many many ways, but even as she progresses, so do all the other kids her age. It is an extreme up hill battle to not only keep moving forward as they are, but to also make up for time lost during her regression and catch all the way back up. Basically she has to work twice as hard as any typical kid to even hope to get where have gotten to by just sitting still and developing normally. I still have hope that she will someday catch up, at least in some ways, to her age peers. I will never give up hope.<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDmJnlrdMdYtOosVtcgBKZYyNsxfiQArVjmkTRzRaTvQf-fxvhHC81sISbx7djuIvoi9HOnHeh7Ze7u4kTq_2dghxlw8UPrfC0L5jn0joQQWPCkp9IM0lBmNwe7JdF36-QUVPxD6-dwvI/s1600/Lots+of+drawing.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDmJnlrdMdYtOosVtcgBKZYyNsxfiQArVjmkTRzRaTvQf-fxvhHC81sISbx7djuIvoi9HOnHeh7Ze7u4kTq_2dghxlw8UPrfC0L5jn0joQQWPCkp9IM0lBmNwe7JdF36-QUVPxD6-dwvI/s200/Lots+of+drawing.jpg" width="149" /></a></div>
But I have also learned to adjust my expectations. Expectations of motherhood, expectations of what our lives should be and actually are like, expectations of education, therapy, progress, growth, behavior, medicine, pretty much everything. These adjustments allow me to keep gauge on where we actually are and celebrate every little victory that comes our way without needing to bemoan or mourn any of those other realities that belong to many other childhoods, but not this one. I'm getting pretty good at it and compared to some of these much bigger adjustments the most recent adjustment is a relatively small one: It has to do with the dog.<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgju8NEDxuZsc5CPnGHbwe8fYFT-GKcLsHjWe8u48eVxvTo0ZAhH0Uc7lIPgT-FkNnNTxOcb7yCzQdyO5gaElm3Cw-wN6sfzOkkiOigC3DwlIcuLFfW1O3Pwxtj1Omhco1KRPdgpEOQznE/s1600/Tallulah+%2526+Temp+%25282-27-12%2529-007.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgju8NEDxuZsc5CPnGHbwe8fYFT-GKcLsHjWe8u48eVxvTo0ZAhH0Uc7lIPgT-FkNnNTxOcb7yCzQdyO5gaElm3Cw-wN6sfzOkkiOigC3DwlIcuLFfW1O3Pwxtj1Omhco1KRPdgpEOQznE/s200/Tallulah+%2526+Temp+%25282-27-12%2529-007.jpg" width="200" /></a></div>
We are doing great with fundraising. Over 80% of the way to our goal. Over and over again I have felt humbled and grateful and so thankful for all of the wonderful people who care so much about our daughter and want to help her and our family get through all of this. It has really been an amazing experience. And it is going to be an amazing experience for Lu to get her dog this summer. However (the adjustment) it seems that it will probably not be Booth after all.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjioyYAFSZLqn-aa7qi-Ak3DYFBIrqrni-lxYkAu9fbX3qm6XQRX5uRv-Y0F8PLZrsAFcl3OGwjVUuotFfwMN1mkkCoriLRQwpUrRF8fM5is5h-jYRu6qcmfyoW9ST6I5EGYLyeifEOzgQ/s1600/Tallulah+%2526+Gunner+%25282-28-12%2529-045.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjioyYAFSZLqn-aa7qi-Ak3DYFBIrqrni-lxYkAu9fbX3qm6XQRX5uRv-Y0F8PLZrsAFcl3OGwjVUuotFfwMN1mkkCoriLRQwpUrRF8fM5is5h-jYRu6qcmfyoW9ST6I5EGYLyeifEOzgQ/s200/Tallulah+%2526+Gunner+%25282-28-12%2529-045.jpg" width="133" /></a></div>
I admit it, when Booth was here working with Lu in our home, I pretty much fell in love with him. Not just with him, but also with the idea of him. I saw him as standing sentinel over our baby girl, protecting her, guarding her, keeping her safe. In my mind it wasn't just any dog that we were working towards getting for her, it was this one very particular dog that I wanted. And that's exactly what it was. It was what I wanted.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNRdyvKmHJKOROZl67xmfdU-M588f0jonc0UIJPd1yrDIxOIp7L9O3gnvYbhy_kq01f8yw5DNUhz_b6ycBAeQ6fxVJTKIz03giXng06PtbvW_4sRCQiAWFwmSdlcr_3mglj0tn2x7oq38/s1600/Tallulah+&+Gunner+(2-28-12)-007.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNRdyvKmHJKOROZl67xmfdU-M588f0jonc0UIJPd1yrDIxOIp7L9O3gnvYbhy_kq01f8yw5DNUhz_b6ycBAeQ6fxVJTKIz03giXng06PtbvW_4sRCQiAWFwmSdlcr_3mglj0tn2x7oq38/s200/Tallulah+&+Gunner+(2-28-12)-007.jpg" width="183" /></a></div>
On our last trip to Phoenix Lu met a couple more dogs. And did really well with them. The dogs that she responded to best were not German Shepherds. They were not big. They were not imposing. They would instantly not strike fear into the hearts of evil-doers. They were some of the smaller, very sweet and friendly looking golden retrievers. One in particular, Gunner, she responded to in ways that we have never seen her respond to anyone or anything. The evening that he came to the hotel room was one of the first times that she did not get at all upset by the arrival of the trainers with the dog.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU3KQyQWwfV8bJoA9eKxTgLrzBWMKfcSyEpbTiL-NgcbkwaengWGBj7UMQqaD-YoO8phd38DbwXJxHSwamKZcLXudYXmG3pCd31Gt4E-bPjkUom1pIRkTPjVLybvL2wcrGUDaldTMTE-w/s1600/Tallulah+&+Gunner+(2-28-12)-020.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="141" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU3KQyQWwfV8bJoA9eKxTgLrzBWMKfcSyEpbTiL-NgcbkwaengWGBj7UMQqaD-YoO8phd38DbwXJxHSwamKZcLXudYXmG3pCd31Gt4E-bPjkUom1pIRkTPjVLybvL2wcrGUDaldTMTE-w/s200/Tallulah+&+Gunner+(2-28-12)-020.jpg" width="200" /></a></div>
Usually she had to warm up for awhile before feeling comfortable enough to climb down off of my lap or the sofa next to me or out from under the covers of the bed to go and play with the dog on her own. But this night she asked for her shoes on and then went right out for a walk, held on to the leash the entire time, and even repeated 'stop' and 'look for cars' when Stew said it to her when they were about to step off of a sidewalk into a parking lot.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCMVj9VK1xTjlsAB_lJZadqiRlHkJFPlCmxUyDMu7r-Ug8pFz2l6uN6082FLadeECa84tcYt6LBAmCRC4Z0VQ5aKGR_bbN_CVNZJg3cA4GRtVQqj1UiDBz5Pd2gFGGpmtRj7W6HriT_wY/s1600/Tallulah+&+Gunner+(2-28-12)-030.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="130" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCMVj9VK1xTjlsAB_lJZadqiRlHkJFPlCmxUyDMu7r-Ug8pFz2l6uN6082FLadeECa84tcYt6LBAmCRC4Z0VQ5aKGR_bbN_CVNZJg3cA4GRtVQqj1UiDBz5Pd2gFGGpmtRj7W6HriT_wY/s200/Tallulah+&+Gunner+(2-28-12)-030.jpg" width="200" /></a></div>
When they came back from the walk Lu climbed into bed and Gunner climbed in with her. She smiled and giggled as he positioned himself next to her in the bed. They cuddled for a bit and then Lu got up and went around the room collecting every toy she brought with her from home.<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisN9yt6D3EDAdt17T_KQXg6oRXIK2TPv2Lymw1U55TZXnPYktVmHD8Ij7EIYLuM1p2xVNnNOJckFdNNSB2EUSiNKb7RSFsfm5TlHIPWoz9SoYBpgke38QBZ2_KeS06hCuWr9zo_6PlGo8/s1600/Tallulah+&+Gunner+(2-28-12)-041.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisN9yt6D3EDAdt17T_KQXg6oRXIK2TPv2Lymw1U55TZXnPYktVmHD8Ij7EIYLuM1p2xVNnNOJckFdNNSB2EUSiNKb7RSFsfm5TlHIPWoz9SoYBpgke38QBZ2_KeS06hCuWr9zo_6PlGo8/s200/Tallulah+&+Gunner+(2-28-12)-041.jpg" width="200" /></a></div>
As she picked up each toy she carried it over to the bed and presented it to Gunner like she was giving them to him, or at least inviting him to play. She was sharing. Really sharing, purposefully and with intent. She even watched him closely after each gift, as if expecting some kind of response from him, something she rarely if ever does with people.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUS_EuoQvr0KlbiaZ7Hniit-QgFSTIhe3p3dBsCZZYs_saL4cF3mj41sghm7wM7BTDa9NSxd5jAl5bJTQ1UMc4hPtcpqvII4CG1tGDlZuZSj2Iz5YZbv36PxnWC878VBpI-IG7T1DmUc/s1600/Tallulah+&+Gunner+(2-28-12)-035.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /><img border="0" height="169" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUS_EuoQvr0KlbiaZ7Hniit-QgFSTIhe3p3dBsCZZYs_saL4cF3mj41sghm7wM7BTDa9NSxd5jAl5bJTQ1UMc4hPtcpqvII4CG1tGDlZuZSj2Iz5YZbv36PxnWC878VBpI-IG7T1DmUc/s200/Tallulah+&+Gunner+(2-28-12)-035.jpg" width="200" /></a></div>
Then she picked up one of her own discarded socks from the floor and put it onto Gunner's foot. I held my breath. I couldn't believe it. She just put a sock on the dog's foot!<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLj5OTUDnYCnB_VXp3Sc4nNMqgU7v2Awc6HqgnrcZFd7lABwEPx7zpInJJSnTmjtVURZrPaUSGSitbFYX7-9pVmeduYJgw2Mc-4NOzou4HlJxW-BaN-nLol79yAR2AmAdaRy-6Df61DeM/s1600/Tallulah+%2526+Gunner+%25282-28-12%2529-047.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLj5OTUDnYCnB_VXp3Sc4nNMqgU7v2Awc6HqgnrcZFd7lABwEPx7zpInJJSnTmjtVURZrPaUSGSitbFYX7-9pVmeduYJgw2Mc-4NOzou4HlJxW-BaN-nLol79yAR2AmAdaRy-6Df61DeM/s200/Tallulah+%2526+Gunner+%25282-28-12%2529-047.jpg" width="200" /></a></div>
Then she picked up the other sock and put it on her own foot. This probably doesn't sound like a very big deal to anyone else in the world, but I cannot tell you how long and hard we have worked to try to teach Lu to put her own socks on. Teaching her to hold both sides, stretch them out enough to fit over all the toes, aim the foot for the opening without losing balance and toppling over from sitting, then to not leave one toe sticking out on either side and pull the whole sock up. We have worked on and off for nearly two years trying to get her to put her own socks on, and this was the very first time in her life that she had ever done it. And she did it all by herself with no help and no prompting.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggfEjRnAK6pkutmVCeJur6zqIQOJQWRiiLdSg-1afjEjHPtdgy_sRawoIF_VwOuiHwR17YpPqSkHnyfCEC_db7lRU0ZC-WAjo3zSiUb-LPMGre-Zer4y3ptKJwHGq6_tUF6jJTzdcHvew/s1600/Tallulah+&+Gunner+(2-28-12)-043.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="123" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggfEjRnAK6pkutmVCeJur6zqIQOJQWRiiLdSg-1afjEjHPtdgy_sRawoIF_VwOuiHwR17YpPqSkHnyfCEC_db7lRU0ZC-WAjo3zSiUb-LPMGre-Zer4y3ptKJwHGq6_tUF6jJTzdcHvew/s200/Tallulah+&+Gunner+(2-28-12)-043.jpg" width="200" /></a></div>
The next thing she did was pick up her sippy cup and offer Gunner a drink of her water. Again, this doesn't sound like much, but the idea that she might think the dog was thirsty and wanted to give him a drink, this level of consideration for another living thing, was also a first. It completely blew our minds. I think I was in tears at this point in the visit.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirCy0tz08IhkUwlx-mPvXiB-e99n3xOrM7o07dY0cz5G_CK1V_oh5Tgv_wTEZhxru0xb4b3YckBSpRMOx-f4r76j5TcYO-Js5lUIzpkz_VIf9hjAGBwLcDfDaXbPKDlcWSO82i_VZyux0/s1600/Tallulah+&+Gunner+(2-28-12)-044.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirCy0tz08IhkUwlx-mPvXiB-e99n3xOrM7o07dY0cz5G_CK1V_oh5Tgv_wTEZhxru0xb4b3YckBSpRMOx-f4r76j5TcYO-Js5lUIzpkz_VIf9hjAGBwLcDfDaXbPKDlcWSO82i_VZyux0/s200/Tallulah+&+Gunner+(2-28-12)-044.jpg" width="186" /></a></div>
The trainers and I talked some about my attachment to the idea of Booth being Lu's dog and one of them astutely told me that they thought that I bonded more with Booth than Lu did and that Lu bonded much more with Gunner than she had with any of the other dogs. Part of me wanted to say that she had gotten used to the routine of meeting dogs and interacting with them by now and maybe if she met Booth again she would do as well with him, but at the same time part of me wanted to acknowledge this amazing preference that Lu showed towards Gunner. After all, this is going to be HER dog. Not my dog. Not a family dog. Not even a guard dog. This is her Autism Service Dog and if a golden retriever can make more of a connection with her and bring out better behaviors and results from her, then who am I to stand in the way and insist that she have the dog I want because I want it?<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1olt_vcyLXEOj161VfPDL7VMn_padncvR3yYSrgXE3XHIA8Z3_kDnQiEmkynzIGz4_xcR_S01i789cJvZAgZpC33KjlVPlYRUHyNzOtrtITnj7G3yL2C0-EWrEEK-NNveEvAu03bCVn0/s1600/Tallulah+&+Temp+(2-27-12)-002.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1olt_vcyLXEOj161VfPDL7VMn_padncvR3yYSrgXE3XHIA8Z3_kDnQiEmkynzIGz4_xcR_S01i789cJvZAgZpC33KjlVPlYRUHyNzOtrtITnj7G3yL2C0-EWrEEK-NNveEvAu03bCVn0/s200/Tallulah+&+Temp+(2-27-12)-002.jpg" width="169" /></a></div>
The trainers brought up a couple of other reasons to go with one of the smaller goldens or labs instead of one of the enormous shepherds: 1. they are now so enormous that they could easily stand on their back legs and put their front paws on Stew's shoulders, which means that they are large enough to accidentally hurt a tiny little thing like Tallulah without ever meaning to. We talked some about the need for larger dogs for larger boys who might be rough and require a dog big enough to be able to handle them without getting hurt. And 2. the trainers have decided to wait until this first littler of shepherds are 2 years old instead of placing them at 18 months which would mean waiting until Feb of 2013 for one of them to get placed with Lu. All the time realizing there is a possibility that Booth might not pass all of his medical exams for placement, or they might decide that they shepherds are better suited as mobility dogs for adults instead of autism dogs for kids.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBgAUlTTLSvbvH2v2HTpFFxcoHPailPDlNX7PJFkb7hNLmB5NrEFbY2-vjnioLrNxg_yELuaNNd9zjJ-k3ozvpRiN4NmBpvbcD-1c_MdSttT2c5n0SGd_QSsdzLdBsGApQfMnmKQaSTso/s1600/Tallulah+&+Temp+(2-27-12)-005.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBgAUlTTLSvbvH2v2HTpFFxcoHPailPDlNX7PJFkb7hNLmB5NrEFbY2-vjnioLrNxg_yELuaNNd9zjJ-k3ozvpRiN4NmBpvbcD-1c_MdSttT2c5n0SGd_QSsdzLdBsGApQfMnmKQaSTso/s200/Tallulah+&+Temp+(2-27-12)-005.jpg" width="200" /></a></div>
If we go with one of the goldens or labs who are already ready to go we could all do boot camp this summer and Lu could start Kindergarden at her new elementary school and have the dog with her from day one. Stew and I have both decided that this would probably be the best thing for Lu. That way there would not be an adjustment part way through the school year where the dog would be this new and novel thing. If she starts school with him then she will always be the girl with the dog and it won't seem strange later on.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNj5sG4goNBjGWi9c1o0sUmhOk16psSdV-7xpU0OMPd-94AhibJoMWHPWvTUgEls95zseIP0L6UDvrnooDHkBbTXh3m9TThEH2GRPzLmEojWHrNM6Zkjg6xo3qj_kt7yuUYfyxjdcwVLw/s1600/Tallulah+&+Gunner+(2-28-12)-022.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNj5sG4goNBjGWi9c1o0sUmhOk16psSdV-7xpU0OMPd-94AhibJoMWHPWvTUgEls95zseIP0L6UDvrnooDHkBbTXh3m9TThEH2GRPzLmEojWHrNM6Zkjg6xo3qj_kt7yuUYfyxjdcwVLw/s200/Tallulah+&+Gunner+(2-28-12)-022.jpg" width="133" /></a></div>
I want to take a moment to once again thank everyone who has helped us raise the funds for the dog. It has been such an amazing outpouring of love and support. And I realize that some of you who have helped us might be as attached to the idea of getting Booth as I have been so I wanted to give you all the explanation for why we may go with another dog in the end. We all have to do what is going to be best for Lu. Thank you all for helping us do that. We love you!babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com2tag:blogger.com,1999:blog-2756466903407524974.post-58016422842323938532012-03-06T15:46:00.000-08:002012-03-06T15:46:37.196-08:00Fundraising Video and Thank You CDs!<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/Ca4XpNCu5fM?feature=player_embedded' frameborder='0'></iframe></div>
<br />
<br />
Arizona Goldens put together a video from the visits we had with dogs at the hotel while we were in Phoenix in December and the home visit when they brought Booth up from Phoenix to visit us in Flagstaff. This was filmed shortly after Christmas.<br />
<br />
We were down in Phoenix again this past week and Lu had an amazing time meeting several more dogs, taking walks outside with the dogs and even visiting a very large and busy mall with the dogs! I think that she has gotten really used to the routine now of meeting a dog each night when we stay in the Phoenix hotel. She was much less upset by them coming over each night and it took her much less time to calm down, get interested and start to interact with the dogs. I didn't manage to take a single photo during that time because Myffy was grouchy and ill and had a difficult week in Phoenix so I was mostly managing her during the visits, but I will ask Brain from AZ Goldens to send us some of the photos he took so I can do another post about all of the progress that Lu has already been making with meeting all of these wonderful dogs!<br />
<br />
I also wanted to report that Stew's Fundraising Retrospective Cds just arrived last night so we will start sending them out to everyone who has donated $25 or more to Tallulah's fundraising site (<a href="http://www.servicedogfortallulah.info/">www.servicedogfortallulah.info</a>) and for whom we also have an email address and mailing address. If you have already donated, please send us a message to make sure that we have your address! YouCaring.com said that they can release the addresses of people who have donated only at the very end of the fundraiser once all of the funds have been collected, so if we do not hear from you before that time, we will contact you at the very end.<br />
<br />
Thank you again to everyone who has donated and who has reposted the link to the fundraising website. As of today we have so far raised $12,632 which is 70.18% of the $18,000 goal from 195 supporters. I have told Stew a few times during this process that it has felt kind of like that part at the end of It's A Wonderful Life when all of George Bailey's friends and family come rushing to his aide unexpectedly. It's been really overwhelming, the outpouring of love and support for Tallulah and our family. I hope that there will come a time when we can repay each and everyone of you in some way and make you all feel as loved and special as your support has made us feel. Thank you all so much.babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-11399777345145601222012-02-07T10:28:00.000-08:002012-02-09T06:57:28.252-08:00Getting Tallulah an Autism Service Dog<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKGPNmxg8G0w4w6UT9-rVH1r_7HUIFhOU5TriPqk9bTAkt4HdjSVV_NCgG8ddtNRJcR_HZx4UnImAXjKvAyWMupSS85PUl73qvhtqUinbOeEnBbQiMry-6bPfR6zVgWV_L9r_0yL2OJsE/s1600/Booth+Guards+Lu.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKGPNmxg8G0w4w6UT9-rVH1r_7HUIFhOU5TriPqk9bTAkt4HdjSVV_NCgG8ddtNRJcR_HZx4UnImAXjKvAyWMupSS85PUl73qvhtqUinbOeEnBbQiMry-6bPfR6zVgWV_L9r_0yL2OJsE/s200/Booth+Guards+Lu.jpg" width="95" /></a></div>
We are getting Tallulah an Autism Service Dog!!! The down payment has been paid and we have met the dog we hope will be hers. This gorgeous, huge, black German Shepherd is Booth. He is 10 months in these pictures and will weigh about 30 pounds more before he is fully grown. Az Goldens can't guarantee we will get Booth until the placement has been made, it's a matter of when he is ready in his training and when we finish fundraising. He is from a litter of 6, so hopefuly Lu could be matched with a sibling if we can't get Booth. (But I really hope we get him!) It's hard to express the sense of calm reassurance, security and strength that I felt when he was in our home working with Lu. Even Stew was won over in moments and finally admitted that maybe there is a dog who could make enough of a difference in Lu's life to be worth the extraordinary price.<br />
<br />
I want to explain a little more of the thinking behind this decision with the dog. I've debated for several days whether or not to open up about this. It is quite personal but I find that since Lu's diagnosis the more I can be open and honest about my fears and feelings, the better we are able to connect with others, get the help for the girls that they need and find the support that has helped get us through this all. So here goes:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRj11aBHKpekIhxcJ7g9rz5UwgFw-WT0BsiYycL84cvFrrMbVsAWgq4dRid0BGPn71cw9lihmMCQjDI1kkuacFrNfKiBo3FcGX1_rWcWWEnpyqH_YWk3pkXMAntlLNpdhqKzqQE4t36j4/s1600/Hello+Booth.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="168" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRj11aBHKpekIhxcJ7g9rz5UwgFw-WT0BsiYycL84cvFrrMbVsAWgq4dRid0BGPn71cw9lihmMCQjDI1kkuacFrNfKiBo3FcGX1_rWcWWEnpyqH_YWk3pkXMAntlLNpdhqKzqQE4t36j4/s200/Hello+Booth.jpg" width="200" /></a></div>
<span class="Apple-style-span">A lot of people who know me probably don't know that I am a survivor of childhood sexual abuse. It's not something I talk about much. It affected me greatly at the time, both the abuse itself and the psychological trauma of going through three years of trail to put my abuser in jail, but at this point it all just seems so far in the past. At least it did until I had children of my own. Two beautiful and extremely vulnerable little girls. As they approach the age when my own abuse began, (Lu turns 5 in May) I can feel the tremblings of an old anxiety stir within me. I was a typically developing child-- not to say I don't have a few autism-ish quirks of my own which Stew happily points out to me from time to time, but fully capable of speech both physically and cognitively. Yet for years I felt powerless to alter the terrible situation I was in. When my few feeble attempts to get help were misunderstood I descended into silence. Lu with her limited communication ability would not have even that smallest of choices- whether or not to attempt to get help if someone hurt her. According to current statistics (<a href="http://www.undesirableelements.org/pages/secretsurvivors.html">http://nctsn.org/nctsn_assets/pdfs/caring/ChildSexualAbuseFactSheet.pdf</a>) sexual abuse now affects 1 in 4 girls and 1 in 6 boys. When developmental disabilities and communication delays are thrown into the mix that number doubles. (</span><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><a href="http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.cdc.gov%2Ftraumaticbraininjury%2Fpdf%2FVictimizationTBI_Fact%2520Sheet4Pros-a.pdf&h=uAQEBelyM" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: underline;" target="_blank"><span class="Apple-style-span" style="font-size: x-small;">http://www.atvp.org/Material/Brochures/PDF_Brochures/SA_-_SA_in_the_Disabled_Community.pdf</span></a><span class="Apple-style-span" style="font-size: 11px;">)</span></span><span class="Apple-style-span">. Particularly for the non-verbal who are physically and cognitively incapable of understanding and explaining what happened and positively identifying their abusers. And even more so for disabled people who require assistance in the bathroom.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2YuIwmKhlz6MsHm0jnBj6o93T0ns16JFyGZAZJL57VvLQY32G9YRy2Q46Hv1mxLY-WQ7v9TFnaAaS77xPoJmCimuQpf4nwliGl_BJ5li6me0OaxjFf-HRcchmPl_avyDVQH0oCOfy0uY/s1600/Booth+Bedroom.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2YuIwmKhlz6MsHm0jnBj6o93T0ns16JFyGZAZJL57VvLQY32G9YRy2Q46Hv1mxLY-WQ7v9TFnaAaS77xPoJmCimuQpf4nwliGl_BJ5li6me0OaxjFf-HRcchmPl_avyDVQH0oCOfy0uY/s200/Booth+Bedroom.jpg" width="195" /></a></div>
The chance of Tallulah being abused at some point in her life is so statistically high that I just can't sit back and do nothing to try to mitigate it. At the moment I do my best to be with her or near her for as close to every minute of the day as I possibly can. We personally select and vet every person who works with her. When she goes to school she is accompanied by a one-on-one aide hand selected by me and trained by our BCBA so that she is always with someone we know and trust. But I know that I cannot always rely on my own physical presence to keep her safe. Most parents think that they are keeping their children safe. I know better than most the ways predators can insert themselves into children's lives so that parents will not suspect. And I'm also terrified of the random stranger who could snatch her one day when she does finally manage to really and truly escape from me or another caregiver even just enough to get out of sight for a moment-- something that would be so horrible and possibly fatal given all of her medical complexities.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCyAs2ZI2EgQfwdNb4__8r6TIGCERapuqXd9J3jv58IQcfPYydZ0ZJcuuFgNZ3DptVVVnT0eSW_5Bg56pswa85DX6pH9TztPiNEl2qDk8MvBTT6tnmQfzEyzAv926j6suuEpDt8x-juM8/s1600/HandLeash.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCyAs2ZI2EgQfwdNb4__8r6TIGCERapuqXd9J3jv58IQcfPYydZ0ZJcuuFgNZ3DptVVVnT0eSW_5Bg56pswa85DX6pH9TztPiNEl2qDk8MvBTT6tnmQfzEyzAv926j6suuEpDt8x-juM8/s640/HandLeash.jpg" width="528" /></a></div>
<span class="Apple-style-span">This is one of the main reasons I want to buy her a Wonder Dog (here is a great NYTimes article on service dogs titled Wonder Dog: </span><span class="Apple-style-span" style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><a href="http://www.nytimes.com/2012/02/05/magazine/wonder-dog.html?_r=1&hp">http://www.nytimes.com/2012/02/05/magazine/wonder-dog.html?_r=1&hp</a></span><span class="Apple-style-span">). I want a dog who's attention is always on her, who can protect her and alert responsible adults whenever she might be in danger. I want a dog who will stick right by her side no matter what happens, through natural disasters or car crash or if something happened to me and I was rendered unconscious or even killed while we were out in public together. I want a dog who can be trained to a 'safe list' of people who are allowed to take Lu's hand and lead her somewhere and who will let no one off of that list take her anywhere. I want this anchor, this measure of security, this creature who's entire world completely revolves around Tallulah, to whom her wellbeing means everything. I want this for her safety and I want this for my sanity. Just the physical presence of this huge, lovely, potentially ferocious dog will tell any evil doers, this child is protected. Don't even think about it.</span><br />
<br />
There are a lot of other benefits that come with the service dog and I want all of those for her as well. But the safety aspect is what sold me.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj08iW0WLadhSADBOZ65yHlT51Uzh93owFLxr2FCo4AsokpInE9CRQEhyQ0SaUbej2BNw2tyKDCBWMci7mrwu2ukEmwLwfSsMFTGjUocGPelPvHKC2yJo6fxeWctluCalXsubl_8xmtSC0/s1600/CarRide.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="140" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj08iW0WLadhSADBOZ65yHlT51Uzh93owFLxr2FCo4AsokpInE9CRQEhyQ0SaUbej2BNw2tyKDCBWMci7mrwu2ukEmwLwfSsMFTGjUocGPelPvHKC2yJo6fxeWctluCalXsubl_8xmtSC0/s200/CarRide.jpg" width="200" /></a></div>
Several people have questioned the very high cost of buying this dog and couldn't we find one that is less expensive for her. I have looked around, but for this level of training the answer is no. The dogs from Arizona Goldens are all given the same basic training and then get individual specialized training depending on whether they will become seeing eye dogs, wheelchair assistance dogs or autism service dogs. They are all elite. The best of the best. Like the Navy Seals of trained dogs. Which is exactly what I want for Lu. This is why we have committed to spending $15,000 for a dog that will be with her for the next 10-12 years or so, and over $3,000 for the boot camp where they train us and the people who work with her how to become handlers for the dog. However our own personal finances are already so overstretched from 2 years of Autism and EE related medical and therapy costs that we really have no choice but to turn to family, friends and the kindness of strangers to help fundraise for this cause. If you are interested in helping us get an Autism Service Dog for Tallulah, please donate here:<br />
<br />
<a href="http://www.youcaring.com/search_result?fundraiser=tallulah">HERE</a>.<br />
<br />
All donations over $25 will receive a thank you gift CD from us which will be ready in March (for the 555 fans among you it has a song from the 30(!) bands Stew has played in during the past 2 decades. A selection of his personal favorites and many unearthed exclusive and never-before-released songs!). <br />
More info and track listing here: <a href="http://milkandalcoholrecords.com/stewart-retrospective-cd">http://milkandalcoholrecords.com/stewart-retrospective-cd</a><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTWR2WZmawDorlFC-bDdVFKVnHha5Q8zQC1f-QiCu4iiL1X77wfDghkUcU7pvW6zF6gxYJQ9Yn0I1J7HlUSgOzRmsDd41YUBvxY1qkBQEmRg5q5dOD38V9AgObSe0t7C032NcwGJva5HI/s1600/4015226495-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTWR2WZmawDorlFC-bDdVFKVnHha5Q8zQC1f-QiCu4iiL1X77wfDghkUcU7pvW6zF6gxYJQ9Yn0I1J7HlUSgOzRmsDd41YUBvxY1qkBQEmRg5q5dOD38V9AgObSe0t7C032NcwGJva5HI/s1600/4015226495-1.jpg" /></a></div>
<br />
All moneys from the sales of our music both physical and digital will also go towards the dog. This includes all 555, Red Square and Milk and Alcohol releases on iTunes and those located on our band camp sites:<br />
<br />
<br />
<br />
<a href="http://boyracer.bandcamp.com/">http://boyracer.bandcamp.com/</a><br />
<a href="http://555recs.bandcamp.com/">http://555recs.bandcamp.com/</a><br />
<a href="http://milkandalcohol.bandcamp.com/">http://milkandalcohol.bandcamp.com/</a><br />
<br />
For physical mailorder: <a href="http://indiepages.com/boyracer/mailorder.html">http://indiepages.com/boyracer/mailorder.html</a><br />
<br />
Last but not least, I have just reopened my etsy store at <a href="http://www.babyracer.etsy.com/">www.babyracer.etsy.com</a> and am attempting to upcycle all of the coolest clothes my kids have grown out of to raise money for the dog as well. I have really missed being crafty during the last couple of years and now I'm getting crafty for a cause. And I'm trying to use up every bit of craft raw material I have in the house so I don't have to buy anything new to make the inventory for the store. All upcycled items have been thoroughly laundered and I am only using the clothes that are still in great shape. Some of their nicer dresses have only been worn once or twice on a special occasion before they grew out of them so a lot are pretty much like new!<br />
<br />
Please buy or donate what you can. Every dollar helps and we so appreciate the support.babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-37102722977773103242012-01-23T14:05:00.000-08:002012-01-24T13:14:57.606-08:00Relaunch of the Babyracer Etsy Store<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: justify;">
<span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEyBWQEYNR_lPlGDkDPAsP7SiNjz9m2rWQ3YLJyngWxtEsyA9uhjOnJkJImwMS_a4cIJDNkyHtE4lX-_JNxdivjU1AXtVFmPtiMsVpSqEL5WY5tIaRdY7_qvMEkCidCsHq_AMg5aOX8d0/s1600/Pink+Dandelion.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEyBWQEYNR_lPlGDkDPAsP7SiNjz9m2rWQ3YLJyngWxtEsyA9uhjOnJkJImwMS_a4cIJDNkyHtE4lX-_JNxdivjU1AXtVFmPtiMsVpSqEL5WY5tIaRdY7_qvMEkCidCsHq_AMg5aOX8d0/s320/Pink+Dandelion.jpg" width="238" /></a></div>
<div class="separator" style="clear: both; text-align: justify;">
<span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;">B</span></span><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"><span class="Apple-style-span" style="clear: left; margin-bottom: 1em; margin-right: 1em;">ack in 2008 I first started this blog as a craft blog connected with my babyracer etsy store. I was trying to adjust to life staying at home with an infant out on our ranch where I was very isolated. I mean really isolated. And I'd always loved doing crafts, so I started crafting, posting things on etsy, and doing the blog along side. The focus of the blog shifted when Lu was diagnosed and I didn't feel like I could spend time on crafting. But now I've decided to reopen my etsy store to try to help raise money to get Tallulah's Autism Service Dog. </span></span></span></span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy4yAYLtzIkdyyuiHCcsTRn-yXUFvluQFSCASTL2wo9KL7es_eP81IOfNX8aSUYPzK6Yuaqhtw8eFpIJLpaDRqe_HErz9hHcVBdrI9-ZzGiY7gOz612TJIzOvfTlkMk-s0u7Vj8FgxQ8w/s1600/Blue+Zebra+Close+Up.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: justify;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy4yAYLtzIkdyyuiHCcsTRn-yXUFvluQFSCASTL2wo9KL7es_eP81IOfNX8aSUYPzK6Yuaqhtw8eFpIJLpaDRqe_HErz9hHcVBdrI9-ZzGiY7gOz612TJIzOvfTlkMk-s0u7Vj8FgxQ8w/s200/Blue+Zebra+Close+Up.jpg" width="149" /></a></div>
<div style="text-align: justify;">
My kids have a lot of cute clothes and they seem to grow out of them so very quickly. I saved all of Lu's clothes because we knew we wanted at least one more baby, and even though we put aside thoughts of a third child after Lu's diagnosis, I still saved all of Myffy's baby clothes too.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7_XK_aQ3RXM1oozbGszojW6INJQr4eTjX7OOVQK6iKOf2c0jr9xRcwzoVYw1srjPDHSWmd_IvRZu99wmi6VuwX8iCz5UnLV54XOWGuI080cim_UvwkMgBJ7G8-uyh-q0MR2pIcrLkmnY/s1600/Red+Tree+Yellow+Birds.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7_XK_aQ3RXM1oozbGszojW6INJQr4eTjX7OOVQK6iKOf2c0jr9xRcwzoVYw1srjPDHSWmd_IvRZu99wmi6VuwX8iCz5UnLV54XOWGuI080cim_UvwkMgBJ7G8-uyh-q0MR2pIcrLkmnY/s200/Red+Tree+Yellow+Birds.jpg" width="149" /></a></div>
<div style="text-align: justify;">
Which is a good thing because I've decided to make my new project upcycling all of the best, cutest and least worn clothes into fun new pieces for other kids to enjoy. I'm trying to do it with only the craft supplies and the clothes that I already have so I won't be putting any money into it that could be going to the dog, and any money we get out of it will go to the dog. And we'll all be saving the planet a tiny bit by reusing clothes that still have a lot of good wear in them.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKXzzpVe3Ho0Nbj7ZC5zWGUG3UBxKXlNp-2E8iqYlHSJJCtdZLQpGVdddkmi-gx1xj9DcL_qiDrqq7A-s3Z4zOmQZXrUOWp0duMMVogefmdpOQUquaF8ohK-vcCGNve55anr1tlGOo_Uc/s1600/Blue+Scooter+closeup.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: justify;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKXzzpVe3Ho0Nbj7ZC5zWGUG3UBxKXlNp-2E8iqYlHSJJCtdZLQpGVdddkmi-gx1xj9DcL_qiDrqq7A-s3Z4zOmQZXrUOWp0duMMVogefmdpOQUquaF8ohK-vcCGNve55anr1tlGOo_Uc/s200/Blue+Scooter+closeup.jpg" width="200" /></a></div>
<div style="text-align: justify;">
I wouldn't have imagined that I would be able to find the time to do this project, but the upside of Lu's recent incessant sleeplessness has been that I have had this strange time in the middle of the night during which I can't really do anything that requires real thought (like my taxes say) but I have found a real meditative solace in sitting beside her stitching while she colors and plays in the dead of night. The pictures shown are some of the projects from these nights.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmhZDw-XYEhM_pZOYGZBtfozUdGPFQs8P3QXPsGqno6HCQ0itSuj8mbXO0rX_1QuuWKHPeoCPjOR1gNoIaERdilVdf9lYkb0-DYhlY0tgBvJN5THhjpMZua0isu6dzyOUO7vShw0TT0fc/s1600/Vega+Stripes+close+up.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmhZDw-XYEhM_pZOYGZBtfozUdGPFQs8P3QXPsGqno6HCQ0itSuj8mbXO0rX_1QuuWKHPeoCPjOR1gNoIaERdilVdf9lYkb0-DYhlY0tgBvJN5THhjpMZua0isu6dzyOUO7vShw0TT0fc/s200/Vega+Stripes+close+up.jpg" width="200" /></a></div>
<div style="text-align: justify;">
It's kind of a slow process day by day, but I hope you will check out the store and come back again from time to time to see what else I have been able to get in there. I'll try to keep putting more and more items in as I find the time and come up with new little designs. Everything that has been upcycled is in the upcycled section. Thanks for looking and thank you for your support!</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: left;">
<div style="text-align: justify;">
<a href="http://www.babyracer.etsy.com/">www.babyracer.etsy.com</a></div>
</div>babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-90345964105299454302012-01-18T20:17:00.000-08:002012-01-19T07:37:43.859-08:00Disneyland and the DogStew finished branding the short-age calves early today and picked Lu up from school. When he got home he called out to me and seemed so sad as I came down the stairs from my office. He told me that he got to the classroom a little early and that the kids were still in circle time. All of the kids except for Lu. (She was at the back of the classroom with her aide.) And they were talking about Disneyland. He teared up a little. I asked him what was wrong and he told me that he hadn't realized until today Lu was the only kid in the class who couldn't talk.<br />
<br />
I had to stop and think for a minute. I tend to not think of Lu as being completely non-verbal because she has a certain set of words that she can and does say, but the idea of an in-depth conversation about the coolest aspects of Disneyland is definitely way beyond her capabilities. She doesn't even know what Disneyland is. Requesting toys, movies, bath and bed are the basic functional extent of her vocab. But I knew what Stew meant. I've had those moments myself. Lots of them over the past couple of years. Sometimes we both get so caught up in her world, in how hard she works and how much she does and how far she has come that it's a shock to see what just naturally happens with so many other children her age. I didn't want to say there-there and pat him on the shoulder, or remind him of how far she has come or any of the other things that popped into my mind at first. Instead I decided just to talk about Disneyland.<br />
<br />
When I was a kid I loved Disneyland. No, wait, I LOVED Disneyland. Especially Mr. Toad's Wild Ride. The first time I went on that I really thought that I was driving the car and crashing into everything. It was definitely a magical place for the 5 year old me. But the idea of taking our kids to Disneyland has been beyond impossible. Until now...<br />
<br />
Why you might ask? Because of Booth.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju59irQEvp_JDiRYdwzdZwXpdhssZgppswdUwrCtX7RZAgSTuVqQifRGqm8Sl4WcvlpBINFUjbibylrip1ndC2hfbjmTSHNAQ5McAF8T2n2dYBDvbL8jo-x0OSVuYonCk8Wj_WsEaFhTs/s1600/Booth+Guards+Lu.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju59irQEvp_JDiRYdwzdZwXpdhssZgppswdUwrCtX7RZAgSTuVqQifRGqm8Sl4WcvlpBINFUjbibylrip1ndC2hfbjmTSHNAQ5McAF8T2n2dYBDvbL8jo-x0OSVuYonCk8Wj_WsEaFhTs/s400/Booth+Guards+Lu.jpg" width="190" /></a></div>
Booth is the fantastic and amazing big black German Shepherd that we met for Lu through Arizona Goldens. Arizona Goldens trains and places service dogs. Seeing-eye dogs, hearing dogs, wheelchair assistance dogs, and (most importantly for us) Autism Service dogs. I fully intend to write a post completely dedicated to him and our fundraising efforts to get him for Lu next, maybe even tomorrow or the next day, with photos and everything, but for now let it suffice to say that the possibility of his presence in Lu's life and all of our lives makes the idea of traveling somewhere actually seem possible again.<br />
<br />
Not long ago Lu hid in the house. This is something she does with some regularity. But this time it was different. It was just me home with the girls, Stew had to stay the night out on the ranch. Lu asked for some cookies so we started to bake. She got bored, wandered off, and as I put the cookie tray into the oven I realized it was quiet. FAR TOO QUIET. Myffy was playing nicely with her Toy Story dolls in the livingroom, and I thought that Lu had headed that way, but where was she now? 10 minutes of looking calling, shouting, yelling, screaming, pleading, begging commenced. I couldn't find her. I just couldn't find her. I looked everywhere she normally liked to hide. I checked all of the closets, bathrooms, bedrooms, in cupboards, under sinks, behind toilets, everywhere! I checked and rechecked all of the doors and windows. All locked. She couldn't have gotten out and locked them behind her. She had to still be somewhere in the house. But I was stumped. What if she found a way to get into the heating ducts? Or some crawlspace I didn't know about? We only moved into the house in October. Maybe there was something I didn't know. I started to think about what I would say to the police when I called them and then I heard it, a thump on the bedroom wall. She had to be in the walk-in closet. I'd already looked in there several times, but she was smart and climbed in behind my shoes in the section behind the door swing. The only way I could see her was to close the door and get down onto the floor to look behind the shoes. And there she was, curled up behind my warm wooly slippers.<br />
<br />
This happened at home, in a place where she was safe. But what if we had been at Safeway or Target or Disneyland and someone walked between us breaking the grip of our hands? What if she managed to get out of sight for even a second because someone tripped and fell or my attention was momentarily diverted by Myffy falling over or something? What if she hid in a place that was so open and unsafe that I could look for days and never find her? The thought of even trying to navigate an airport with her feeding tube and potty issues (she does great at home, but strange toilets can be scary- I have to always carry her diamond printed princess seat with us for her to ever go in a new toilet) has been beyond us for so long now. But we started talking about it. About bringing the dog. And a respite worker if one of the girls who works with her would want to come. We could stay in the hotel right there at Disneyland so we could leave to go do her feeds and still go back afterwards to see more stuff. And the dog is trained to be tethered to the child. They could be connected to each other so that she could not get away from him and no one could separate them. If we had the respite worker come too, just to help with hand-offs and potty sits and diaper changes for Myffy and getting meals and everything, we could probably make it work. There was suddenly a very small light at the end of a very long tunnel.<br />
<br />
I tried to imagine it from Lu's perspective. About half of her world is tied up in her movies. All of her longest verbal phrases at this point are echolalia from the scripts of her favorite movies. What would it be like for her to meet some of her favorite characters in person? To get to touch them, hug them, hang out with them for awhile? I have heard that Disneyland is great about giving autism passes so that she wouldn't have to wait in line. Not that she would be tall enough for any of the rides. But still, just the place would probably be so amazingly magical to her. And if she tried to jump off of the "It's a Small World" boat because the water looks so inviting, I'm sure that between Booth and us and the respite worker, we could stop that catastrophe from happening. We could keep her in the boat and get to the end of the ride. And if she gets too tired or overwhelmed and needs a break, we could go back to the hotel for awhile. Yeah, I really think we might be able to make this work!<br />
<br />
As we went over all of this Stew brought up the fact that Adam Ant is playing in Anaheim, CA on our wedding anniversary, Oct 20, 2012. I'm not sure that we will have raised all of the funds for the new dog by then ($15,000 for the dog and $3,000 for the two weeks of bootcamp to train us and all of the Hab and Respite workers to become handlers for him). Or that we or Lu will all be ready by then. But it gives us something to shoot for. Something to look forward to finally. A fun time for the kids and a bit of fun and crazy for Mom and Dad too if we can swing it. It's worth a try at least.<br />
<br />
If you are interested in helping us raise the funds we need to get Booth for Lula, please go to:<br />
<br />
<a href="http://www.youcaring.com/fundraiser_details?fundraiser_id=428&url=helptallulahgetanautismservicedog">http://www.youcaring.com/fundraiser_details?fundraiser_id=428&url=helptallulahgetanautismservicedog</a><br />
<br />
Any and all help is greatly appreciated. Please repost or send to anyone you think might want to help. And stay tuned for more about Booth! I have so much to say about this amazing and wonderful dog!<br />
<br />
Thank you!<br />
<br />
<br />babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com0tag:blogger.com,1999:blog-2756466903407524974.post-45706171120562288682012-01-09T10:26:00.000-08:002012-01-09T10:26:19.322-08:00Credit where credit is dueI wanted to write a quick post to give some credit where credit is due. I realize in the last post about wanting to get Lu an autism dog I may have sounded disappointed about her progress. And while I do wish that we were able to have conversations right now and that I could communicate things to her like the danger of moving cars and deep swimming pools and strangers and all of the things that give me cause to worry about her safety right now, I still have to look back at where we were two years ago and realize just how far she has come.<br />
<br />
Two years ago this month was when Stew and I were finally forced to confront the fact that something was going horribly wrong with Tallulah's development and had been for nearly a year. We could no longer tell ourselves that all kids develop differently and that talking late wasn't such a big deal, plenty of people talk late and are ok and that everything would get better when the new baby came. We could no longer let everyone else tell us those things either. We could not delude ourselves anymore. We asked our pediatrician for a referral to the Arizona Early Intervention Program fearing that she may have been going deaf, but with no idea exactly what was going to happen next.<br />
<br />
Two years ago Lu made no eye contact, said only 4 or 5 words but only when she felt like it, never upon demand, she did not respond to her own name, she did not seem to hear us when we spoke, she spun, she flapped, she had tantrums daily, sometimes hourly, she actively tried to hurt her sister, sometimes herself, sometimes us, and seemed to be completely out of our reach.<br />
<br />
Fast forward to today and I can see a little girl who a generation or two ago probably would have been recommended for institutionalization and probably would have gone through life mute, has now acquired so many of the skills she lost and has gone on to gain so many more. She can now get her most basic needs met through one word requests like potty, hungry, dress, water, horse, car, etc., and can be prompted to put many many words into short sentences now. She repeats relatively long phrases from films and even if she does not yet fully understand what she is saying, I firmly believe that at some point she will. And often she says these movie phrases within a context that kind of makes sense. Like shouting "Ow! Why would you do that?" from How to Train Your Dragon at the top of her lungs when we bring her into the waiting area at the hospital. I can tell you we got plenty of looks for that one. She also plays much more appropriately with her toys now and at times even interacts a little with the other kids at school, and sometimes even with Myffy. She has started to show more interest in other people, including Myffy, Stew and me and a few times has even done things like come up and pat Myffy when she was crying and say "it's ok, it's ok" which is what I often say to her when she is crying while I pat her. The other day Stew pretended to cry when something happened and Lu came right up to him and put her hand on him and said "don't cry" which was pretty amazing. Her tantrums have reduced in number and intensity. Her repetitive behaviors and violence had dramatically decreased. In short she has progressed greatly in every area that has been targeted by her many therapies.<br />
<br />
I could go on and on with all of the amazing things that she has learned to do, but it would take a long time and the point of this post is to give some credit to her amazing BCBA, therapists, tutors, Habilitation workers and Respite workers who do so much to help both our girls and us. I won't name them individually because I didn't ask permission to publish all of their names, but they are amazing. Every week day at 7am one of the tutors arrives to do one-on-one ABA therapy with Lu. On weekends they arrive at 8am. Lu does therapy 7 days a week, 5 to 5 and a half hours a day, plus preschool three days a week for 2 and a half hours a day with one of the home program tutors as her one-on-one aide in the classroom, plus speech and OT each one hour a day, one day a week. All of this therapy and school adds up to a total of 46.5 hours of per week for Lu (more than an adult's full time job). And another 15 hours of one-on-one ABA for Myffy plus her hour of speech each week and her 15 hours or preschool each week. Needless to say, a village is helping to raise both of my kids. And without this village who knows where we would be, the kids, our family, us parents, all of our sanity. We owe so much of what we have today to all of these wonderful people who pour in so much time and energy and enthusiasm and love to the work they do with our kids. Thank you all!babyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1tag:blogger.com,1999:blog-2756466903407524974.post-21828141553958677032011-12-17T20:52:00.000-08:002011-12-18T06:20:20.440-08:00It's time for an Autism Service Dog<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD2-3KRsBkrY7G5RRH8w3lHGmuhfxZb_1ULiJd95GgS8eJ-Mu0i7Cz3oIzdfz5NtIyBVgyuhhHw_yFiMgFHyS97oayVUesUeXtM8jwf5eAWG785LZ79IWyhhtXTY5FWlgj9OE5Obr4u_s/s1600/Windowdressing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD2-3KRsBkrY7G5RRH8w3lHGmuhfxZb_1ULiJd95GgS8eJ-Mu0i7Cz3oIzdfz5NtIyBVgyuhhHw_yFiMgFHyS97oayVUesUeXtM8jwf5eAWG785LZ79IWyhhtXTY5FWlgj9OE5Obr4u_s/s1600/Windowdressing.jpg" /></a></div>
<br />
Lu has been helping us decorate the new house for Christmas, and I finally finished all of the paperwork to apply for Lu to get an autism service dog. It was a lot of paperwork and required a prescription from a doctor as well as a letter of medical necessity, but we did it all and are now waiting to hear back about our application. Based on all of the information that I have gathered I am quite certain that Lu will be approved for the dog so we are starting our fundraising efforts now. I know that this will probably sound insane to most people but the cost of a service dog is between $10,000-$15,000 over the lifetime of the dog depending on the particular needs that the dog is trained to meet. The company that we are working with, Arizona Goldens, told me that no one ever just buys a service dog, everyone fundraises for at least six months towards the purchase of their dog. Our hopes for the ways in which this will improve Tallulah's life are many, but the major point for me is safety- she has no understanding of the dangers posed by moving vehicles, deep water (we have started swimming lessons but she cannot yet support herself in the water which does not stop her from running fearlessly off of the edge of a pool), strangers and putting things into her mouth that she shouldn't, both food items which are forbidden by her restricted EE diet and non-food items which could be dangerous. She is also what is knows as and eloper- one who is wily, escapes and wanders. We are constantly on red alert and put her school aide and therapists and tutors on red alert to beware of her tendency to wander.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPNmFU1uzC-gJa1YX5znfyt7nUTVIqM76OTQ47DsaYsKNfOJZmrBJTEBslHih7hDMLxne1CI06hFjeuprxhfqAP6j08KhseyZsNZe6SxTnpPCuMGvQMDd89TsU5j6jqr2Ah6xV6dbndFI/s1600/hat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPNmFU1uzC-gJa1YX5znfyt7nUTVIqM76OTQ47DsaYsKNfOJZmrBJTEBslHih7hDMLxne1CI06hFjeuprxhfqAP6j08KhseyZsNZe6SxTnpPCuMGvQMDd89TsU5j6jqr2Ah6xV6dbndFI/s1600/hat.jpg" /></a></div>
<br />
<br />
We are also hoping that the dog will be able to help her with transitions from one environment to another. Our most speculative hope from reading testimonial accounts, is that the presence of the dog at the foot of her bed might enable her to sleep in her own room and put herself back to sleep when she wakes throughout the night. Right now Tallulah still sleeps in the same room as us, her tiny bed pushed right up against ours so that she has to walk over me to get up in the night so I will wake and be able get her back to bed or follow her. I have had so many people ask me why I don'd just let her go when she gets up at night, but Lu is a danger to herself at the best of times and wandering around alone in the dark is just a recipe for disaster that would most likely lead us all to the ER. I would much rather lose sleep by keeping her safe than lose sleep by taking her to the ER in the dead of night. The idea that the dog could help her with sleep is mainly based on observations of autistic children with night terrors and nightmares. Lu rarely if ever wakes screaming or fearful, so I am not sure that this is the source of her incessant sleeplessness, but the effect of her sleeplessness on the entire family has reached such a critical point now that I would buy the dog just for that purpose alone if someone could assure me that it really would help her sleep. Even just a little. Still, even if that benefit does not materialize all of the other potential benefits of the dog make it something that we are now ready to pursue whole heartedly.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGPCJA2qN5Q72Hjs8Nu4LWW68iibfBy9tzQsZ0h7PbVr5HAozoEkL1oRXPhEESi4eOTNPAqVbuAmZYuSzXQWrN7ilIKMnWiBhGLrS8WNTU0Fv_-suFf1xJFKGezFWZ6hym2PKp5kzPGrI/s1600/TallulahTub.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGPCJA2qN5Q72Hjs8Nu4LWW68iibfBy9tzQsZ0h7PbVr5HAozoEkL1oRXPhEESi4eOTNPAqVbuAmZYuSzXQWrN7ilIKMnWiBhGLrS8WNTU0Fv_-suFf1xJFKGezFWZ6hym2PKp5kzPGrI/s1600/TallulahTub.jpg" /></a></div>
<br />
<br />
I have to admit here that although Lu is doing awesome in her therapies and is now rocking it at school three days a week, I have slowly come to the realization that all of this incredibly intensive, expensive and beneficial therapy is not likely to result in her being able to reagin skills to the tune of shaking off her autism diagnosis as I have heard of other children doing by the age of 5 or 6 or 7 or 8. It is not many, not the majority, definitely the minority, that are able to regain age appropriate skills to such an extent that their autism is no longer classified as a disability, but of course, like all other parents pouring their hearts and souls and every waking hour and life savings and money from family members and anywhere else they can get it into programs like these, it was our hope that Lu would be one of the lucky few. I don't mean to belittle her accomplishments by any means. She was dealt a terrible hand by genetics and fate and has made Herculean gains through sheer will and force of effort. But still she is autistic. And I have to face the fact that she will be all her life. So we have to make plans for that. We have to plan for the future. For her safety and security and quality of life. What happens to her if something happens to us, her parents, her caregivers and supporters who understand her when others most likely will not? The dog is not a solution to all of this. We have a lot more work to do. But the dog is a start. Hopefully it can be with her for many years to come and will help to make certain parts of her life easier and more comfortable for her. And for Myffy as well, who is also doing awesome in school and in therapy, but who is also showing very real and definite signs of being affected by autism.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0mkc061SMOiAFjsuE7KYx9rNrqjHmxJkzsn59behguqCkSxhYTLUQTM6p0zWO1aqZxZIAf3zZHfER1l3oLjetK4tcj5oqYw-s4SmG0DLtPyrqfvzl8zuvDrPVU5J5QBH1HYfeqNRi0J8/s1600/Myffyandtop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0mkc061SMOiAFjsuE7KYx9rNrqjHmxJkzsn59behguqCkSxhYTLUQTM6p0zWO1aqZxZIAf3zZHfER1l3oLjetK4tcj5oqYw-s4SmG0DLtPyrqfvzl8zuvDrPVU5J5QBH1HYfeqNRi0J8/s1600/Myffyandtop.jpg" /></a></div>
<br />
<br />
So with this in mind we have decided to start our fundraising campaign. From now on all sales of our music in physical or digital form will go towards the purchase of the autism dog. Physical copies of records and cds available directly from us can be found at <a href="http://indiepages.com/boyracer/mailorder.html">http://indiepages.com/boyracer/mailorder.html</a>. We have drastically reduced the price of many of these physical copy cds, some as cheap as just a couple of dollars so it's cheap and easy to stuff the stocking of any indie-loving loved one. Digital versions of most of the cds we have made over the years as Boyracer, Jen Turrell, Steward, Mytty Archer, Tricia Yates Fan Club, Possum Moods, Grey Tapes, Fog and Ocean and the rest can be found on iTunes but Stew has also made some great bandcamp sites with rarities to download directly from us at: <a href="http://boyracer.bandcamp.com/">http://boyracer.bandcamp.com/</a> If you want to donate to the dog besides getting music, you can do so through the Let Me Hear Your Voice song link on the Boyracer bandcamp site. It has a choose your own price tab. Anything from $1-$10,000 will be gratefully accepted. I'm just kidding about the $10,000. No single person should ever actually contribute that much. Below is a photo of Lu from August of 2008, a few months before she began to regress into autism. Get a load of those great big dreamy eyes.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmtVR-HrwzHsYQ4zGa4GMUY9ea0ELPQ1K6iRmRoSRiYi2JV97X2lUUpuxJ8gGTu1k8oo7m8CKR4-DbCY0cBD14a5oOpZqmLLGvz_YOeOgVJ3KWA1Ur7etvaJF-jqFVMjdQs3ZEsdXvsuY/s1600/tallulah.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmtVR-HrwzHsYQ4zGa4GMUY9ea0ELPQ1K6iRmRoSRiYi2JV97X2lUUpuxJ8gGTu1k8oo7m8CKR4-DbCY0cBD14a5oOpZqmLLGvz_YOeOgVJ3KWA1Ur7etvaJF-jqFVMjdQs3ZEsdXvsuY/s320/tallulah.jpg" width="320" /></a></div>
<br />
Stew has also made a Milk and Alcohol bandcamp website for more recent releases at: <a href="http://milkandalcohol.bandcamp.com/">http://milkandalcohol.bandcamp.com/</a><br />
<br />
And over the course of the next year Stew will be putting up all the out of print 555 singles at <a href="http://555recs.bandcamp.com/">http://555recs.bandcamp.com</a> Right now there are only a few up there but if you check back from time to time we will eventually get all 50+ singles up there as he finds all of the master tapes/discs/reels.<br />
<br />
Sorry to do so much promoting of our websites and music here, but we have to do all we can to get the dog, so I am also planning to relaunch my <a href="http://www.babyracer.etsy.com/">www.babyracer.etsy.com</a> store in the new year. I have decided that rather than giving away the kids outgrown clothes (some of which only get worn once or twice before they grow out of them) I'm going to upcycle the best stuff with silk screening, embroidery and applique. I have so missed being crafty and can now get crafty for a cause.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikB99oAxxUGfAU4yz32lH3v6xmOGunko7NEjqT_IFTRW5Xz7uP10ew4V-3yOS6MBunHlEK4k6qzrEP-hd45C1ltlx8_CMDKDC7xLmk2n8WFcXLhSn-OdfzBpAl52jVVxj792MLyTb_02E/s1600/Hug2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikB99oAxxUGfAU4yz32lH3v6xmOGunko7NEjqT_IFTRW5Xz7uP10ew4V-3yOS6MBunHlEK4k6qzrEP-hd45C1ltlx8_CMDKDC7xLmk2n8WFcXLhSn-OdfzBpAl52jVVxj792MLyTb_02E/s1600/Hug2.jpg" /></a></div>
<br />
<br />
So please, if you have the time, money and inclination, please check out some of these websites to help us get the dog for our girls. Every penny you spend will go to a very good cause. We appreciate every penny and every positive thought.<br />
<br />
Thank you,<br />
Jenbabyracerhttp://www.blogger.com/profile/06041899741899146505noreply@blogger.com1