Credit where credit is due

I 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.

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.

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.

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.

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!

It's time for an Autism Service Dog

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.

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.

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.

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 http://indiepages.com/boyracer/mailorder.html. 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: http://boyracer.bandcamp.com/ 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.

Stew has also made a Milk and Alcohol bandcamp website for more recent releases at: http://milkandalcohol.bandcamp.com/

And over the course of the next year Stew will be putting up all the out of print 555 singles at http://555recs.bandcamp.com 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.

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 www.babyracer.etsy.com 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.

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.

Thank you,
Jen

Myffy and MSG

Back in October, just after we first moved in to the new house, we had two waves of Australian visitors, the second of which included the Mia Schoen Group (aka MSG). The Mia Schoen Group played with us (one more of Boyracer's many last shows, and a surprise showing of The Young Untold since Ara was in town to play with Boyracer) at Mia's Lounge in Flagstaff. The show was great fun and it was so good to get to spend time with old friends. The kids loved having so many people around and so much happening every day.

The video above is Myffy's audition to join the group as they were setting up to rehearse. What do you think? Should she get in? Or maybe she should form a band of her own! I always thought that Lu would eventually do Tallulah Missoula, like Hanna Montana. Maybe we need a sisters group for the two of them instead!

Tallulah and the microphone

Tallulah really likes playing with Microphones, so Stew took the opportunity of having a mic hooked up to a little amp to get some good language opportunities with Lu! She's doing really well with echoing language. This was filmed a few months ago in the summer out in Lu's playroom on the ranch. Go Lulah! Go!

Fall fun

I love the Fall. Fall and Spring, my favorite times of year. Bright and crisp, cool in the mornings and evenings, warm when you stand in the sun during the day. Stew and Lu enjoyed a little time on the trampoline on Friday. Weeeeeeeeeee!

Go Myffy Go!!!

I thought it might be fun to try to upload a few videos of the kids here. I do occasionally take videos on my iphone but never think to post them. If this works I might post a few more from earlier in the year.

This was from back in the summer when it still made sense to wear short sleeves and shorts in Flagstaff. I think this was Myffy's first time trying to walk Wheezy all by herself. I think she did a pretty fantastic job! Go Myffy Go! Go Myffy Go!

Halloween

Lu loves dressing up. She loves her ballet clothes with frothy tutus. She likes princess dresses. So of course I thought, she'll love Halloween. But I should probably know by now that when I set up an expectation like that, something is bound to go wrong. Lu did not like Halloween. She did not like it at all. She only stayed dressed up for about 20 minutes, refused the gluten free/ dairy free pizza that she is now allowed to have from Picazzo's Pizza and spent the entire evening somewhere between quietly weeping and loudly crying. Finally, after we were out of candy, turned off the lights and went to bed, she whimpered herself to sleep as we cuddled. I think it was just too much, too confusing and I think she kept thinking that I was going to leave her. Chock that one up to a good lesson. Hopefully next year we can find a way to make it feel safer and be more fun for her. Myffy and Wheezy had fun dressing up at least.