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.

Bearizona and BFFs

Last month Lu went with her preschool class for her first ever full day field trip. The class went to a wild animal park in Williams, AZ called Bearizona (yes, the focus is on bears). She had to be gone from 9am-2pm which meant for the first time ever, she had to do her tube feeding in front of her classmates. I was a little nervous about this and was thinking of going with the class myself to make sure that everything went ok, but Stew volunteered so I could still take care of getting Myffy to and from her preschool and therapies.

While Lu was at Bearizona, something wonderful happened! There have always been a couple of kids in Lu's class who are a bit interested in her, and who can be roped into doing social games with her, but on this day it seemed that she really and truly made a friend. Everyone was so excited about Lu and her new friend that Stew, Lu's aide and Lu's teacher all messaged me pictures of Lu and her friend holding hands as they walked around the park!

They walked around, they danced with each other, they sat by each other during lunch and generally had a good time together! For those of you who don't really know Lu, this is a very big and very awesome development!!! Lu has always been generally nice to other kids and has even had moments of having a passing interest in some particular kid or another, but her interest in this little girl has gone on past this one day and she still gravitates to her in class and always wants to hold her hands. I am super excited about Lu's new friend, but still can't help feeling just a little nervous about the idea that she could soon get tired of holding hands and dancing all the time without speech. She is a typically developing little girl who just happens to be very sweet and very patient, but I imagine that when she plays games with other kids, they talk, they pretend, they decide to have rules in their games when they play. And even though Lu has come so far since last year, she still isn't quite up to all of that.

Hopefully that is just needless worry and other kids will accept and appreciate my sweet little Lu for the wonderful person she is. Conversation or no conversation.

Myffy's Birthday

I feel like the longer it has been since the last time I posted the harder it is to muster the energy to do it. So instead of trying to catch up I'm just going to start with Myffy's 2nd Birthday and then maybe try to put up a few other posts with photos of cool things that have happened since the last post. So here are some photos from Myffy's Birthday! We have two cakes because I ordered one from the super awesome Big Ring Bakery in town which is gluten free and was able to make cakes to our specification for all of Lu's dietary restrictions, however the first cake was dropped and he thought he would not have time to make a second, so Stew made a really nice spice cake with a mix we got at the health food store and we even found a passable frosting that we could make using whipped coconut milk and oils instead of dairy so the cake on the left is the homemade cake, and the cake on the right is the cake that Bret from Big Ring was able to whip up last minute for us to replace the dropped cake. Both were great!

Myffy Sure liked them both!

She also like sitting and bouncing on the balloons until they popped!

And jumping on the trampoline!

And kissing her Woody doll.

And playing ball with Daddy.

And cuddling with Mommy.

Thanks Tamlyn Corr for taking awesome pictures of the Birthday!!!

Great Kids, Great Animals and Great Times this Summer!

 Ok, after that kind of heavy and emotional last post, and the last couple of posts having no pictures, I wanted to write a more light-hearted catch-up with lots of photos! So this first photo is the one I've been using as my Facebook profile photo lately. One of the few family photos we have with all of us and the kids happily riding on Cinnamon. What an awesome pony!
In other news, Lu has started ballet! She loves her real ballet shoes and tights and leotards and tutu skirts. And she loves running around dancing in front of huge mirrors to the music from Rio.

 This photo with the awesome pink and zebra striped hat is a hospital photo from Lu's last scope. After which she was declared free from Eos!!! And this next photo is Boo Boo Kitty, the newest addition to our ever expanding family.

 This next photo is from one of our evening visits to the Ranch HQ to see horses and calves before bedtime. It's a nice way to let the kids run around, see some animals and wear themselves out before bed. And this photo of Lu eating an ice cream pop, well this is the result of adding soy back into her diet, opening up a whole new world of food, including some much better frozen desert options.

One thing that has not been going quite so well lately is the number of times Myffy has been sick and had to visit the doctor's office. This picture of her sitting on a purple chair is her waiting for the doctor to come in and see her. I guess it's being in preschool for the very first time, but she seems to get sick about twice a month. And the last photo, well this is my mare MissE (in honor of Missy Elliot), her son Bullseye (he will be one in August, what a big little guy) and the sweet little Myffers admiring them. Great kids, great animal friends and great times this summer!

Thanks for reading!

The R-word and a few other things

I read a great Stark Raving Mad Mommy post this morning titled Domestic Enemies of the Special Needs Mommy and wanted it to post a link to it here: http://www.rantsfrommommyland.com/2011/07/domestic-enemies-of-special-needs-mommy.html. But I have to admit that I do so tentatively. I really love her blog, her frankness, her humor in the face of difficulty, and her ability to say things that I might think now and then but usually don't say because I would feel like I was attacking people who don't know any better and possibly attacking people I know well, like and even love. Because the thing is, it was only about a year and a half ago that I only vaguely knew what autism was because of a few articles popping up in Time, Newsweek and parenting magazines. (I remember reading that Newsweek article when Lu was 6 or 7 weeks old and thinking, wow, that sounds so awful. I can't imagine how horrible that must be. Little did I know I was about to find out.) Before experiencing this first hand, I had no idea what this side of the world is like. I did not know who these kids were or all of the ways in which the world can seemingly turn on them and their families when they are dealt a difficult hand.

Often when someone says something insensitive or inappropriate, or sometimes even just outright rude and mean about our kids or our parenting of them Stew gets really angry and says "Don't they know what we're going through?" To which I have to reply, "No, of course not. And not all that long ago neither did you." The truth is that if one of my close friends or family had come to me to tell me that their child was diagnosed with autism the way Stew and I did back in April of 2010, I'm not sure that I would have known the right thing either. And honestly there isn't really an exactly right thing to say at a time like that. I'm sorry or I'm thinking of you all are probably the best. But most responses fell into one of two categories. Both of which I responded to badly. The first was the disbelief/denial category of telling me that autism is horribly over-diagnosed these days and that they are SURE that Tallulah is not REALLY autistic. Doctors just like saying that. It's probably just a phase. All kids do those things. It's nothing to worry about. The second category was the 'I could have told you something was wrong with that kid ages ago' category. 

My response to the first category was anger. Do you really think that we would have gone through all of this, all of these referrals and appointments with neurologists and psychologists and early intervention screening/evaluation panels just for fun? Do you really think we would lightly and purposely try to get our daughter diagnosed with a serious and life long condition just for kicks or attention? No one wants to believe that something is really seriously wrong with their own child. We went through months of denial and excuses and trying to find explanations of what was going on with her before finally resorting to the professionals to help us out. We exhausted every avenue we could think of before arriving at this very difficult moment of telling all of our nearest and dearest what is going on with our child and our family. We would not be doing this if the diagnosis were not certain. And believe me, the doctors do not want to tell this to any parent alive. I actually found it really frustrating how long it took for anyone to even say the word autism to us because they are all so hesitant to make the pronouncement until they are completely and absolutely sure. Can you imagine having to give this kind of news to someone? Short of 'I'm sorry but there has been an accident...' or 'I'm afraid the operation was not a success..' this is about the worst bad news anyone ever has to give to anyone else. 

My response to the second category was also anger. Oh really. You knew my child was autistic all this time and just sat there on that information, wasting valuable early intervention time? You were able to identify this before her parents, pediatrician, and even the Early Intervention program and psychologist? It took months of tests, observations and evaluations to come to this conclusion. And yet you could tell just by looking at her? And the thing is, that even now, most people still can't tell just by looking at her if they catch her in a calm and engaged with a toy moment. She has no physical markers of disability (unless you can see the Mic-Key button of her G-Tube protruding through the front of her dress). She is incredibly cute and after over a year of intensive 35-40 hour a week behavioral, speech and OT therapies she now is able to at least briefly look most people in the eye. She can even be prompted to say 'Hello ______' to most names and 'Bye Bye' when it is time to go. I imagine that it is possible that for people who work with autistic kids every day, Lu may have been an obvious case to some. To me however, who hardly knew what the word meant, I didn't know what autism looked like and having someone tell me that they knew something was wrong with my precious baby girl all along, when I only had doubts and nagging fears that I pushed aside most of the time, well I guess it hurt my feelings and my pride in trying to be a good mother.

So what I really want to say to everyone who responded to me in those first few days, weeks, months and who I may have driven away with my anger about whatever response you had: I am sorry. I am truly sorry. The wound was still too fresh. I was in too much pain. I know that you were trying to be helpful and offer comfort, but my eyes were just too glazed over to see it and accept it. I was like an animal with her foot in a trap; ready to bite anyone, even a hand offered in aid. So please, if you are a friend who has been out of touch since I bit your head off over comments about Tallulah and autism, feel free to get back in touch if you want. The special needs world is isolating and we can all use all of the friends we can get. And for the most part I am not nearly as sensitive about things as I was in those first few months. I have grown accustom to so much that was foreign back then. Only a few things make me flinch now and bring tears to my eyes.

Which brings me to one last point I want to make. It is about the R-word. I feel like middle school was the main time in my life when I heard it a lot. 'That's retarded', 'what a retard', 'yeah you're special... SPECIAL ED!'. It fit right in there with Polack jokes, fat jokes, gay jokes and the rest. I don't remember ever saying it much, or really any myself, but I do remember tolerating it, laughing a long, just like everyone else. The special education room at my school was for the profoundly disabled. Children in wheelchairs, children who could barely move, who could not feed themselves, who could barely if at all speak any words. I didn't understand their conditions or their lives. It bothered me if someone used the word about one of them because they so obviously had no control over their situations, but regular kids calling each other retard seemed kind of harmless back then. I obviously was not the most sensitive kid regarding this, but I didn't feel like I was among the most insensitive either. Fast-forward 30 years. Not long ago I was hanging out with someone I care about deeply who tossed off the word like it was nothing in conversation. 'Oh my god that is so retarded!' I know she didn't mean to upset me or anything but it hit me like a wave of ice. I fumbled through trying to explain that you just can't say things like that anymore and she was mystified. But Tallulah... 'Oh she's not retarded!' I explained that her diagnosis of autism does include mental retardation. 'Oh come on, she's not. Just look at her. You can tell.' But the thing is, you can't tell. Autism is a developmental disability. Lu's mental age is significantly younger than her physical age. The Department of Developmental Disabilities through which we get so many of Tallulah's services was only recently renamed. It used to be the Department of Mental Retardation. So please at least think about this. Don't call your computer retarded when it isn't working right. Don't call your boyfriend retarded when he forgets to call or txt. Don't call yourself retarded when you forget to do something really important. Because what you mean is faulty, stupid, defective, non-functional. What you mean is an insult. And what the word actually refers to is my sweet Tallulah and other people like her. It is hurtful and demeaning. And we are all better than that.

No Eos! Hip-hip-hooray!

It's taken me awhile to get around to posting this because we have been so busy, but the results from Lu's last biopsy came back just before the 4th of July weekend and we were thrilled to get the all clear on her throat. No Eosinophilic clusters in her esophagus at all, which means that whatever it is that has been causing the reaction in her is one or more of the foods we have eliminated from her diet. Which means that this condition can be managed by managing her diet. Yay! A big step in the right direction.

The Next Step: so now the next step is the trial and error of adding back one food at a time and testing her after each addition. We are starting with Soy. The reason is that adding soy back into her diet opens up so many gluten free/dairy free foods that have been off limits so far. We toyed with adding back one of the big guns: wheat or dairy, but the truth is that those are the most likely culprits and the idea of giving her back some of her very favorite foods in the world only to take them away again 90 days later sounds pretty terrible. We still aren't able to adequately explain any of this to her and without explanation it just seems cruel and so hard for us all. She has become so determined and so sneaky lately. So good at finding ways to get her own way. Right now she is somewhat content without the things that have gone from her diet. She asks for some of them now and then, but it's not too bad.

So we'll add soy back first. It makes a difference to her diet, but not such a drastic one. She can have miso and tofu again. She can have soy ice creams and rice dream. She can have a few more kinds of dark chocolate that had soy lechtin in them. There are a few kinds of cookies and crackery things she can have. We'll try it for 90 days and schedule the next endoscopy to test her again. If this goes well we'll add nuts back next. And then probably eggs and see where we are. We'll keep trying and hoping.

And now off to bed.

Tallulah's Birthday and Project Pony

 Have I ever mentioned that Lu loves horses and ponies? If I haven't, well let me mention it now. And if I have, I will reiterate: Tallulah LOVES horses and ponies. For as long as I can remember horses, ponies and their cousins zebras have been pretty much her most favorite animals. And since she had to have a Birthday party with out cake, ice cream, pizza, hot dogs, burgers, and all sorts of other things most kids get to have at their parties, instead we focused on hiring a pony. Lu was in heaven.

 The party was going pretty well for Lu even before the pony arrived. She was excited by the balloons and people and presents and things. I don't think she ever tried the chocolate fondue but she loved the allergen-free cookies my mom made. She was actually in a great mood the whole time. And because she didn't know the pony was coming, she didn't even realize it was an hour and a half late getting there, which was too bad for the kids who had to leave for naps and things. But for the kids who stayed, Stormy showed up and was a terrific treat!

Once Lu got onto Stormy's back she was fantastically calm and serene. She patted him as she rode and even leaned down to kiss his mane a few times. When it was time for someone else to ride, she got off and let them ride but kept hold of his lead rope and walked the circuit with him, never letting him out of her sight. She pet his nose. She hugged his neck. It was wonderful to watch her being so caring and loving with him. There was no doubt in our minds, Lu is a true horse lover.

I've heard and read a number of things about autistic children and equine therapies. We even took Lu to one person who claimed to be that and I left with the impression that what we needed to find was a remarkable horse and we could do without the therapist. That therapist at least. So after watching Lu with this pony Stew and I made up our minds, it is time to get Lu a pony of her own. And so began Project Pony! The search for the perfect pony for Lu. Gentle, kind, bombproof, small, not too old so they can bond and grow together for several years, but not too young either.

 We wanted a pony that she could ride for several years, and then if she gets serious about riding she can move onto something bigger and Myffy could keep riding the pony for a couple more years. For those of you who may not know us very well, we live on a ranch with cattle and horses, so one more tiny mouth to feed isn't that big of a deal for us. I'd also like to say to anyone who thinks we are spoiling our kids by buying them a pony, how many times have your kids had to have birthday parties with no cake or ice cream or any of their favorite foods? How many times have your kids had to leave their own party to go be hooked up to a machine that pumps liquid amino acids straight into their stomachs? And frankly, with an autistic child who has a hard time engaging with and enjoying the world around her, I really don't think there is any such thing as spoiling her right now. It's kind of like saying you're spoiling your baby by responding to it and giving it your full attention 24/7. Babies need attention 24/7 and right now so does our Lu. And she needs a pony. Sorry if I seem a little defensive here. I've just had a few snide comments lately about all of the many things I do for my kids and the possibility that I might be spoiling them. The truth is that if I could do more for them than I am doing right now, I would happily do it. And they aren't spoiled. End of story.

 So the search began. We looked at a number of different options and price ranges. But in the end we went with someone that Stew found through a friend who gets ponies from the Amish out east and brings them west to sell. Which means not only are they saddle broken, they are also trained to drive a cart. How awesome is that? I'm already envisioning Halloween with the kids in the cart Trick-o-Treating. When we arrived at the place in Chandler we were led out back to where the ponies were and Lu immediately gravitated towards Cinnamon and her baby, who was the horse the owner recommended for Lu. She has worked with some special needs children before and was just as calm and sweet as she could be. Lu ran up to her and reached way up to her back, trying to pull herself on. She walked around front and touched Cinnamon's face, she walked all around her, touching and hugging. The baby (who I want to call Nutmeg) was only slightly less calm than his mother and tolerated both girls walking around him, looking at him. He is about the size of our dog Wheezy, already halter broken and completely awesome! In the end we left with Cinnamon, Nutmeg, a cart, harnesses, a saddle, bridle, halters and all the tack. It was a deal and a half and Lu couldn't have been happier. A successful conclusion to Project Pony! Coming this summer: Pony Party BBQs out at our ranch on the weekends for all of Lu's and Myffy's friends!

Tallulah's Birthday during National Eosinophilic Disorder Week

This week is National Eosinophilic Disorder Week. I have to admit that until just a couple of weeks ago I did not realize that such a week existed. The fact that Tallulah's Birthday is during this week feels poignant indeed. How do you make a Birthday Party without Birthday Party food? I don't know why I'm so hung up on this, but one of the first things that really got me about Lu's EE was the idea that she couldn't even eat her own Birthday Cake. I remember thinking about it back in January and today it is hitting home harder than ever. Because Lu LOVES Birthday Cake. Anything that looks fun and frilly or has whipped cream on top she points to and calls 'Happy Cake!'- her term for Birthday Cake. She has been pointing to things she can't have and calling out names for them a lot more these past few weeks. And she has also been eating a bit more of the things she can have along with her tube feedings each day. It is encouraging. I'm happy to see her appetite returning and her interest in real foods renewed. But the things she asks for are Happy Cake, toast, egg, yogurt, milk, cookie and ice cream.

For Lu's autism we practice a kind of therapy called PRT during her downtime from other ABA and speech therapies. It's a child led approach where you basically watch to see whatever the child wants, even if it is something that involves a repetitive behavior or obsession because you want to find the things that motivate the child most and use those motivators to create language opportunities. What it comes down to in the eye of the casual observer is that we pretty much give Lu anything she asks for. If we can get her to say it, we give it to her immediately. I have been criticized for this by other parents. 'You can't just give them everything they ask for. They'll walk all over you.' Yeah, easy for you to say with your typically developing child who is able to ask for everything under the sun. If Lu ever gets to the point where giving her what she asks for becomes a problem and seems like spoiling her, well I will be the happiest spoiling parent ever! And we will cross the bridge of teaching her she can't have everything she wants when we come to it. For the time being the focus is still convincing her that there are enough amazing things in this world that it is worth the time, trouble and effort to speak.

However, her renewed interested in food does put a bit of a damper on all of this. She is clearly and loudly asking for things she sees other people and other kids have, but we won't reinforce her requests with the things that she is asking for. I can see her get frustrated. I can see her get mad. She is trying so hard to get through to me, and I do understand, but still I say no. I worry sometimes about messing up the therapy by refusing requests that at any other time we would have fulfilled. How can she understand why I won't give her a glass of milk? I used to give her milk all the time. And suddenly I won't do it anymore. Once she even broke down in tears and wailed "Why? Why?" when I wouldn't give her milk. What (*@$% expletive) mother won't give her kid milk?

I hate EE. I hate it. I want to feed my baby. I want to feed her real and normal food. I want to give her the same kinds of foods that she sees other people eat every day. I am so grateful for the feeding tube system that is keeping her alive, that allows her to grow and thrive, but I hate not being able to give her the food she wants to eat. I want to let her have her favorite ice cream Birthday Cake.

I know there are recipes, there are things to try. I have tried some, but it's just not the same. And after our foray into the world of GFCF diet, I think that Lu might be a little like me. I would rather not have coffee than drink coffee black. I love cream. I love sugar. They are at least half of what I like about coffee. Maybe what I really like is coffee flavored sweet cream. When we tried all the substitutions on Lu it seemed that she would rather not eat those foods than eat the dry, dense, different versions. She would rather eat entirely different food. Or no food at all. Which brought us to the tube.

So what are we going to do for our baby's Birthday Party? The idea we settled on was a chocolate fruit fondue. We found a pretty good chocolate that is completely allergen free. I need to test out how it melts and coats things. But she loves chocolate strawberries. I figure we can just have several trays full of fresh fruit and dip thing after thing into the chocolate. That could seem pretty special, right? And maybe we can try to make some homemade ice cream out of rice milk and frozen crushed fruit or something. And she can still have popcorn and certain potato chips. I better figure it all out pretty soon. Her birthday is tomorrow and the party is on Sunday.

Happy Birthday Baby! 4 years old. Such a big girl who has already been through so much.

Myffy Preschool Update

Shortly after that last post I got a call from The Montessori school to say that they had a spot for Myffy at last. I was expecting them to say it was a spot for Fall Enrollment, but amazingly they said she could start that next Monday! So she did. Unfortunately Lu woke up at 2:30am that morning, which is not unusual in itself. I always call the hour between 2:30 and 3:30 the witching hour because Lu almost always wakes up then, but if she doesn't, then we're usually good on through to a normal morning hour. The unusual thing about this morning was that she never, ever went back to sleep. I took Lu into the other bedroom in the hopes that at least Myffy could get a little more sleep before her first day of school, but it made a rough morning for all of us. I dropped Myffy off at 8:30am with her hat, coat, change of clothes, sunscreen, lunch box, indoor shoes, outdoor shoes, hand sanitizer, tissues, snacks and all the other things they ask you to bring on the first day of preschool. She was kind of interested as we hung her coat, hat and lunch box on the peg under her name, but then the moment she realized I was leaving her there, this new incredible, earth-rending wail that she has developed lately burst from her and the screaming fit began.

The door closed, but the sound followed me all the way down the hall and through two sets of doors, faded away as I walked around the building, but then met me again through an open window as I got into my car and drove away. I glanced in my mirror. Both car seats were empty. I was alone in my car without any kids. It felt really strange. Like my heart involuntarily jumped a little at the sight even though I know neither kid should be there right then. I headed home to where Lu was doing her ABA therapy and would need me to do her tube feeding in a couple of hours. I spent the next 40 minutes doing all kinds of things I keep meaning to do around the apartment but never seem to find time to do, until the phone rang. It was Myffy's school. I could hear Myffy screaming in the background, just as she had been when I left her. She hadn't stopped. They suggested I come get her. Poor baby. Crying like that for a whole hour without stopping. When I got there she was still crying. And she was exhausted. When she saw me her face lit up, she lunged out of the teachers arms and started yelling "Momma! Momma!" I took her into my arms. She quieted down. The crying reduced to sniffing while I talked to her teacher about the best way to ease her into all this. Then Myffy pointed and said "Culla (aka color), culla" referring to the easels where some of the kids were painting. At least she noticed that there were fun things to do in the classroom.

On Wednesday I cancelled my dentist appointment and cleared the whole morning so I could stay at school with Myffy. She started crying as I took off her coat this time and clung to me when we went into the classroom, but I sat down with her, let her sit in my lap, and cuddled her until she calmed down. After awhile Myffy got comfortable with me there and started venturing out a little. Just a few steps at first, then she turned back and launched herself into my lap with a "Momma" and a smile. Then a few steps more. Then she went to check out the birds. And then the fish. And then the instruments. And then the painting area. After two hours I got up to leave. She got upset again, but it was time to go outside right about then and the teacher told me afterwards that she really liked the rabbits and the garden. She cried a little more when she went back inside, but she cried herself to sleep so they put her down for a nap. They didn't call me until she woke up at 1pm.

The next several days we decided to have her stay form 8:30-10:30 each day and each day it got a little bit better. The hard thing about waiting for them to call and tell me whether or not I need to pick her up is that I either have to pick her up before 10:30 or wait until after Lu's tube feed and I've dropped her off for her afternoon preschool class all the way across town and drive all the way back which makes it around 1:30 before I can come back for Myffy. We're fitting in both of their ABA, Speech and OT therapies around these 3 day a week preschool classes. Today was Myffy's 3rd Monday in a row, and today she stayed at school from 8:30-2:30 with a nice big long nap in the middle. She started crying when I got her out of the car, and tried to hold on when I left her there, but when I arrived to pick her up, she wasn't crying or upset at all. She was standing on a step stool helping the teacher wash the dishes from snack time. The teacher sudsed them up, and handed them to Myffy, and Myffy held them under the tap to rinse all the soap off. She didn't even see me come in. I got to stand there and watch her for a few minutes before she turned. When she saw me she smiled, put her dish down carefully, stepped down off of the stool and ran to me for a great big hug. Go Myffy Go!

Autism Awareness Month!

April already! Mid April at that. The past couple of months have gone by so fast I've hardly had time to catch my breath much less blog about it all. But April is Autism Awareness Month so I want to get at least one blog done in April.

A quick recap of what's been going on lately:

Spring Break (March 13-20th) was awesome. We spent it in Phoenix going to sessions at SARRC (Southwest Autism Research and Resource Center) Mon-Fri from 9-3 each day. The evenings were spent as much as possible by the pool. Once again we stayed at Lu's favorite hotel with the lovely big water village where we can order food and drinks right at the pool. Nana and Granddad Anderson arrived from England that Wed and stayed in AZ through the end of the month. It was great to see them and for them to get a chance to reconnect with Lu and really get to know Myffy. The last time they were here was the week Myffy was born, so Myffy had most of her life to catch them up on. It was great fun.

Going to SARRC always makes me wish that we had a place like this to take our girls in Flagstaff. The facility, the playgrounds, the preschool, the therapists, the staff, the kids, everything is awesome and I want to stay there all the time. We brought Myffy in to work with our therapist Alex as well as Lu now that Myffy has officially been categorized as "At Risk for Autism" by the Arizona Early Intervention Program. The type of Applied Behavior Analysis used at SARRC is called Pivotal Response Teaching or PRT and has been a great method to pair with the Discrete Trial Teaching program that both girls are doing in Flagstaff. PRT is child led and can be done anywhere at anytime and does not require props or data sheets in the moment.

Basically, you watch your child to see what is motivating them moment by moment- for instance does Lu seem like she wants to get out of the door. Once you identify the motivator, take control of it- put your hand on the door handle, then set up the language opportunity- "Open door?" and then be contingent on her saying "Open door" before opening it. There is more to it than just that, task variation, using models, questions and time delays to try to illicit spontaneous initiations by the child, but that is the very basic jist of it. The interesting thing is that Myffy responded to this method so well. She really took to it and loves it. And her vocab has been shooting up thanks to this week of training. Which is fantastic! Thanks Alex and SARRC!!!

After Spring Break was over it was back to Flagstaff and back to normal therapy and school for Lu. We have lost yet another tutor lately, so that always makes things difficult. Luckily we are training some great new people right now and I think overall the program is getting better and stronger with time. There just always seem to be these little setbacks. But Lu is doing well at school. She is responding more to the speech therapist and her teacher though she still responds most to her aide. And she is taking more of an interest in the other students. She has even on occasion decided to start hugging the other kids in class. All of the adults respond to this by going ahhhhhhh, that's so cute! Which makes both her and the other kids do it more. We're super happy to have her reaching out to the other kids and wanting to interact with them. But the hugging did start to get a little out of hand in terms of disrupting class (you can't have kids hugging for 20 minutes out of 2 and a half hours) so we've decided to limit it to one hug per kid. That's a socially appropriate parameter. Plenty of people hug their friend to say hello. But to keep hugging, that could get a bit awkward. And not all kids like to be hugged.

I'm still trying to find a preschool placement for Myffy. Haven Montessori is our number one choice, but the wait list there is just so long. We've been trying to get Myffy in since last summer and there is no spot for her in sight. I'm hoping to hear this month that they will have room for her next fall. Fingers crossed. She really needs to have some time with her peers for peer modeling and social development. And I think she would totally love preschool. She always gets so mad when we drop Lu off and she doesn't get to stay too.

April 1st was the Northern Arizona Autism Conference. Stew and I attended. Stew spoke on a parent panel. I managed to see a few talks and go to a few workshops which were all great! I had to miss a bit to go back and forth to the apartment in order to nurse Myffy and do Lu's tube feedings. But it was definitely worth while. Our friend Laura Nagle, who was the President of the NAZ Autism Society of America last year gave a couple of fantastic talks and there was a showing of the trailer of the documentary movie that is being made about her. The film is still in the process of being made but you can see the same trailer on her website here: http://www.lauranagle.net/Film.htm  They actually are still raising funds to finish the project and could really use any support you might be able to give.

And not to bombard you with donation requests or anything, but I have also just set up a fundraising page for Team Tallulah! our own team this year to raise money for Walk Now for Autism Speaks. This is the organization that raises money for research into the causes and potential cures for autism as well as work on finding new and better diagnostic tools to diagnose earlier and better treatments to help individuals and families reach better lifetime outcomes. It's a worthwhile cause even though it will probably not impact our girls directly. Hopefully they will find answers for the generations to come. If you would like to join Team Tallulah and walk with us, please go to www.walknowforautismspeaks.org/arizona/teamtallulah and click on the join us link. If you cannot join us in person but would like to show your support with a donation, please go to www.walknowforautismspeaks.org/arizona/jenturrell and make a donation. Any amount you can afford would be greatly appreciated.

Thank you all for reading and caring.

Lu's Progress and IEP Battles

 Lu has been doing great. Her feedings are going well. She is visibly gaining weight (thank goodness). She sometimes even eats some popcorn or bacon by mouth while tube feeding. Her disposition seems to get happier and more affectionate day by day. The site of the G tube itself is still causing a few problems. It still seems to be painful when the tube is attached and detached so she resists until it is either in or out and then pretty happily hangs out during the feed. A few days ago the skin around the tube looked very odd on one side. By the next day that bit of skin had swelled into a strange shiny red swelling that almost looked like stomach tissue was coming out through the hole. I completely freaked out. Luckily one of Lu's tutors is a nurse and was able to tell me that this is called Granulation Tissue and that it is not uncommon as a wound like this heals. Apparently it is not dangerous in itself, but because of its location it was causing her button to no longer lie flat, allowing stomach contents, including acid, to seep out onto her skin, which meant that it had to be removed immediately. Poor Lu. One more trip to a hospital, one more minor procedure. We waited a couple of hours to get in, but burning it off with Silver Nitrate took all of 50 seconds or so. It looked strange for a day or two, the burned skin sloughed off, and now it looks pretty normal again. If you consider having an open hole in your stomach normal.

 So with all of this progress on the feeding and recovery front, we decided it was time to try to take Lu back to school. Especially since her ABA trained one-on-one aide was scheduled to leave Feb 28th and we needed to get a new person in place. Our preference would have been to get one of the home-based tutors into the classroom with Lu because they all have a good and long behavioral history with Lu and they are all well trained and well aware of the new medical issues. I would also feel so much safer leaving her with them than with a new stranger who she is not used to. But none of the tutors had Mon, Tues and Wed afternoons free. We thought about one of the tutors doing Mon and Wed and me doing Tues, but both the teacher and Dr. G didn't think this was the best idea. It took us ages to get her used to me dropping her off every day. Me staying every other day could really confuse her. Then the school said they had someone they wanted to hire. I was impatient to get someone in place so they could shadow the current aide and get trained by Dr. G who very awesomely agreed to fly out almost immediately to do the training. The school assured me this new person was really great, had experience, was great with kids and they would send her resume. I had some misgivings, mainly about a completely new person knowing how to safely handle Lu's flop on the floor tantrums without injuring the new button. And about toileting since she still isn't independent in the bathroom. Potty training has been really tough (especially with all of her GI issues) and throwing a stranger in there could be a big problem. And I was worried about a new person being able to get Lu to comply with doing meaningful and worthwhile work in the classroom.

I'm not disparaging Lu's teacher with this last comment. I think her teacher is a good one, but at the moment Lu is still not able to learn in a group environment, so her aide is really her teacher in the classroom. She translates and modifies what the teacher is teaching the other kids into something that Lu can benefit from at her current developmental skill level (which although improving, is still far below that of the other children in the class). The aide also pulls Lu from the group after she has spent a certain amount of time in the circle or after she has completed her task because she doesn't get much from waiting while all of the other kids do their tasks. Instead she does discrete trials that Dr. G writes for her at a table in the back, and the aide has to run these trials, provide reinforcement consistent with her home program and take accurate data. These trials are where she actually gains most of the skills that the other kids are able to learn from just hearing a few times in a group setting, and hopefully this will help her to some day catch up with her peers. The aide also does social skills building exercises with Lu by recruiting another student to run protocols that teach Lu to ask another child for a toy she wants, and give another child a toy when asked and to play appropriately with toys with other children. This is something that she cannot get from her home-based program because there are no other kids her age to learn from at home. So the aide position is super important for Lu's education. Without an aide she might as well not be at school.

So after discussing the aide position problem with Stew and Dr. G at length I confessed my misgivings and that nagging feeling that something was wrong and this just wasn't going to work with the person the school wanted to hire. We all agreed that if I wasn't comfortable, then we wouldn't do it. One of the other tutors from the home based program offered her Tuesday afternoon (I hadn't thought to ask any of them for just a Tuesday afternoon, but when I said I was going to go every Tuesday she said she could instead) and we made a plan to have two home-based tutors replace the one school aide. Hooray!

So we had a plan, we wrote to the head of special education and our IEP team to let them know the new plan and were told that unfortunately their candidate had already been hired. Because of hiring policies at the school district, a job posts, is open for a minimum period of time, candidates apply for it, and once it is filled the posting closes and that person has to be allowed a 90 day probationary period during which they cannot be dismissed without grounds. Obviously we had no grounds since she had not yet even started. However Lu's IEP does state that she must have an ABA trained aide. To make a long story short, we spent the past week with Kris training two new tutors for Lu's home-based program and trying to train the new aide provided by the school, but in the end it just didn't really work out. No one warned the potential aide that she was expected to do training and tutor hours outside of school hours and we did not feel confident that she would be able to handle all the complexities of Lu's program without those additional hours.

So finally, after meetings and phone calls and more meetings and emails it was decided that our two tutors who we wanted to be hired will attend with Tallulah as volunteers until we can get their paperwork processed for hiring, and in the meantime the other aide will also attend school since Lu has to have a hired aide. And once the paperwork all goes through, it will just be our tutors as her aides.

I got the feeling several times as we went through all of this that some of the people involved were a bit baffled about us kicking up such a fuss about who her aide is and how well trained they are for the last three months of a preschool class, but the thing they don't understand is that right now Lu is in a developmental window of opportunity that will pass and will never be open to us again. Numerous peer reviewed and reproducible studies have shown that the lifetime trajectory for kids who are able to attain real functional speech before the age 5 is vastly different than for kids who don't. The kids who talk by 5, those end up being the ones who are often called 'recover' and who are able to go to school and learn and have many more options for their future lives. So every day, every hour right now counts. And that is why we have pushed in all our chips on this ABA program, on finding the right aides for her, on trying to give her every tool possible to help her gain skills and make progress. That's why we are fighting so hard for our baby.