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The Holidays

Reindeer WheezyThe holidays are a special time for so many families. For families of children with special needs they can sometimes pose some extra challenges and difficulties. There are times when my kids don’t want to go to school on a particular day, but far and away they prefer the structure and the security of knowing that they are going to school on week days and only have therapy on weekends. When this schedule changes it can make the kids feel insecure. Also days spent much more at home can cause they to go a bit stir crazy. Here are some of our tactics for dealing with the stir craziness:

 

Myffy under treeGoing to the pet store, one of Talllulah’s favorite place in the whole world thanks to the parrots and the ferrets. Lu would get so excited about going that she would jump up and down and shout “Mommy parrot, Mommy ferret, Mommy pet store!”

 

 

 

jingle deerWe also went to the Grand Canyon Deer Farm a few times, though on days when it was hotter than freezing, the ground got a bit muddy. The kids loved it regardless, but the car and their clothes got pretty messy.

 

 

 

Carboard CastleLast year one of the kids friends’ gave them a giant cardboard house that they could paint on the outside and go inside and look out the windows. This year Stew found a castle from the same company. We thought that we would bust it out in the afternoon on Christmas Day, once the kids got bored with the morning’s toys and were getting stir crazy again, but it never happened. In fact we ended up saving it for New Year’s Day when a friend came over with her boys to paint together.

Even though there were a few times when things got difficult for the kids this winter break, it was still their best Holiday Season yet. It’s so great to be able to look back and see the progress being made month by month and year by year.

Summer into Fall

 

TA in goggles

It was a pretty fantastic summer in Turrell/Anderson land. Tallulah learned to swim. I mean really learned to swim so that now she can jump off of the side of the pool, into the deep end, pick things up off of the bottom and swim all around on her own. It is pretty amazing to see and has ticked off one of the major safety concerns on our lifetime to do list. Not that I don’t still stay within arms reach of her just in case, of course I do, but for the most part I just swim nearby and go under the water with her so we can make faces at each other with goggles and hum little songs to each other. Her favorite things is for me to puff out my cheeks underwater so she can press on my cheeks with both of her hands and make a lot of bubbles come out.

 

 

 

Myffy Birthday Ride

Myffy has had a language explosion this summer which has been super exciting! Late in the Spring she started doing this really intense echolalia where she would repeat every word from some of her favorite movies, and then she started anticipating the dialogue, saying the phrases just before the characters would say them. Then, all of a sudden, BAM! Spontaneous speech started appearing all over the place! It has been so totally amazing!!!

 

 

 

 

JenandLu Skyspace

This summer was also a very special one for my father James Turrell who turned 70 and had coast to coast retrospective art shows at 3 major museums accompanied by a number of galleries and institutions with permanent installations like this Skyspace at Rice University. These were the LACMA in Los Angeles, the MFA Houston and the Guggenheim in NYC. I contemplated trying to take the kids to all three, but in the end we decided to take the kids to Houston, and I attended the opening in LA and visited NYC on my own. This was first time I have ever away from both kids overnight other than leaving one to be with the other in the hospital, so it was a pretty big step for us all. But it was also amazing to be able to see so many of my Dad’s works displayed at one time. I am only posting this one photo of us outside one of his pieces because even great photographers can’t do the work justice, much less an iphone camera. You can google him to find some pretty great photos, but better yet, seek out a piece near you and go see it in person. His work really has to be experienced in person.

 


Myffy FlavinThe family trip to Houston was really fantastic. The kids loved being inside of Dad’s ganzfeld at the MFA and had a good time at the Rice Skyspace and the Live Oak Friends Meeting House which also has a James Turrell Skyspace built into the roof. And while we were in Houston we also visited the Dan Flavin museum which was like rainbow heaven for the kids.

 

 

 

 

 

Flavin Play

They also liked playing in the Dan Flavin built into the entry way of our friend Helen’s beautiful home.

 

 

 

 

 

 

Kids flying

The kids are becoming old pros at air travel now. And Dahanna was a wonderful helper to Lu as always. Madison, the Behavior Analyst graduate student who works with Lu both in her home program and as her school aide came with us to help out and enjoy the art.

 

 

 

Lu with friends

In August school started with Lu doing full days of kindergarden for the first time this year and Myffy still doing half days of preschool. They are both at the same schools as last year with aides that they know from their home programs, so the transition back to school was not as hard as it has been other years. Both kids have adjusted well and are making friends

 

 

 

School Lunch

The biggest change for Lu this year has been having lunch at school. Because she is mostly tube fed we started off the year with her going to do her feed while the other kids did lunch, but little by little she has shown more interest in food so we started having her go to lunch with her friends and she has started eating a little more by mouth. Her friends are so good about asking Madison which foods Tallulah is allergic to so they can make sure she doesn’t get any of those things out of their lunches. And of course her aide always makes sure that she doesn’t eat anyone else’s food.

Sister HugIn September Myffy turned 4 and had a really great 4 year old Birthday Party. It actually ended up being a 3 Birthday Party Weekend since each kid was invited to a different Birthday Party for a classmate and then both were at Myffy’s party as well. We were all completely worn out by Sunday night!

 

 

 

 

 

ERR

In October Stew and I launched our new baby jenandstew.com along with our new music label Emotional Response! It felt really good and excited to be doing music again, putting out new music as well as finally getting around making so much of the back catalog available for download on line. It’s something that we have been meaning to do for years. A week later on Oct 20th we had our 12th wedding anniversary. I think the website was a fitting gift to each other. Please check it out and drop us a line!

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!