My Big 5 Year Old Girl!

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.

Here she is at her Birthday Party drinking chocolate pediasure while taking a break from the pool and the trampoline.

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.

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.

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.

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.

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! 

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. 

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.

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Another Endoscopy and Another Dog

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. 

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.

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!

Adjusting Expectations

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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?

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.

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.

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!

Fundraising Video and Thank You CDs!

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.

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!

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 (www.servicedogfortallulah.info) 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.

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.

Getting Tallulah an Autism Service Dog

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.

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:

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 (http://nctsn.org/nctsn_assets/pdfs/caring/ChildSexualAbuseFactSheet.pdf) 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. (http://www.atvp.org/Material/Brochures/PDF_Brochures/SA_-_SA_in_the_Disabled_Community.pdf). 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.

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.

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: http://www.nytimes.com/2012/02/05/magazine/wonder-dog.html?_r=1&hp). 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.

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.

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:

  HERE.

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!).
More info and track listing here: http://milkandalcoholrecords.com/stewart-retrospective-cd

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:



http://boyracer.bandcamp.com/
http://555recs.bandcamp.com/
http://milkandalcohol.bandcamp.com/

For physical mailorder: http://indiepages.com/boyracer/mailorder.html

Last but not least, I have just reopened my etsy store at www.babyracer.etsy.com 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!

Please buy or donate what you can. Every dollar helps and we so appreciate the support.

Relaunch of the Babyracer Etsy Store

Back 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. 

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.

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.

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.

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!

www.babyracer.etsy.com

Disneyland and the Dog

Stew 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.

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.

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...

Why you might ask? Because of Booth.

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.

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.

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.

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!

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.

If you are interested in helping us raise the funds we need to get Booth for Lula, please go to:

http://www.youcaring.com/fundraiser_details?fundraiser_id=428&url=helptallulahgetanautismservicedog

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!

Thank you!