Friday, August 24, 2012
Autism Service Dog Boot Camp
I keep thinking that any day now I am going to have this magical day when I have lots of free time to go through all of the amazing photos that Brian from AZ Goldens took of Lu and Dahanna during the two week Boot Camp when he was in our house in June and then go back and write a really thorough and in depth post about how hard and frustrating and amazing and brilliant the whole experience was for us as a family and for Lu and Dahanna in particular. But days and weeks and months have passed now, and just in case I don't get around to doing the post I really want to do soon, I at least wanted to post this fantastic video that Brian put together from some of the footage and photos that he took while he was here. There was a lot more to boot camp than what is in this clip, and I do hope to write more about it soon, but for now I hope that this will give all those of you who helped us get Dahanna for Lu an idea of how much this has meant to us all:
I told Brian that I thought AZ Goldens shouldn't advertise as just a service dog provider, they should let people know about all of the other things he does for the families they serve: service dog provider/trainer, personal photographer, handyman, consumer reports, family/marriage counselor, and much much more. I have really been floored by the level of service AZ Goldens provides and the true interest they take in the well being of their dogs and the families they are placed with. We have been so lucky to work with them and I would recommend them to anyone.
Wednesday, August 8, 2012
The Trouble with Food Trials
It has been more than a year and a half since Lu was diagnosed with EE and had her feeding tube installed. Since then we have been slowly working our way through food trials one by one to find out which foods her eosinophils react to so we can eliminate those foods and rebuild a by-mouth diet. The ultimate goal is to be able to feed her enough food by mouth to sustain her and get her off of the feeding tube for good.
Don't get me wrong, the feeding tube is a miracle that saved her life, got her back on the growth chart and put enough weight on her to help her look like any other kid a year or so younger than she actually is (rather than a survivor of famine), and for all of that I will forever be grateful. But now that she is going into kindergarden NEXT WEEK (pardon the capitals but I'm kind of freaking out) I want to get her to the point where she can sit down and eat lunch with the other kids instead of needing to be hooked up to the feeding tube.
This won't be a problem this year because our team has decided that Lu will do half days of kindergarden so she can continue her intensive ABA Discrete Trial Teaching program at home in the mornings (this is where all of her skill acquisition has been going on all along), and then will attend school after lunch. So we do a tube feeding before she goes to school and another when she gets home from school, easy-peasy. But we are hoping that by the the following year, when she will be going to kindergarden for full days, that we will have found enough foods for her to be able/willing to eat a by-mouth lunch that will sustain her though the afternoon.
The problem with the food trials is that so far, only egg and soy have gotten the ok from her GI doc. This summer has been a disaster of trying first dairy, then non-peanut tree nuts. It has been amazing and horrifying to watch the way the worst of the old autistic behaviors have come back in reaction to the foods. I've realize that so many of the odd stiff-muscled movements, hyper-active jumping, spinning, vomiting, the extreme levels of verbal noise-making (from the quieter moaning, whimpering, twittering, and throat sounds, to maniacal laughter/giggling, yelling and screaming), and even hitting her own head are all responses to internal pain. The most amazing thing has been that for the first time, she has finally been able to add in the telling and imploring "Ow!" when she looks at me and hits her forehead with her fist. And after seeing her recover and what she is like when she is not in pain, I feel we have finally confirmed that these are not just autistic traits that she does at random (like we were told they were), these are both her reactions to pain and her way of trying to tell me she is in pain. At one point the other night she even said 'help me'. Do I even need to say how badly I wanted to make it all go away? But all I could do was put some children's tylenol in her tube and hold her as she twisted and twitched and eventually fell asleep.
It has been so measurable this summer, both with the dairy trail and the nut trial, the difference in sleep disturbance, self stimulatory behavior, attention, compliance, and even this small bit of self injurious behavior in hitting her own head, oh and the return of the terrible vomiting, that we just have not been able to go through the full 90 days to get to the endoscopy at the end of these food trails. We can see how badly she is reacting, so we stop. It's hard to believe a bit of inoffensive almond milk can have such and extreme effect on someone, but there you go. I just hope it all wears off before she has to start school next week.
Just to clarify: I do not believe that changes in diet in any way 'cure' autism. However, I do believe that if a child has a condition like Lu's EE that causes pain which the child is unable to express verbally, and changing the diet removes that pain, then I do believe that it can affect some of the behavioral characteristics associated with autism. Thanks for hearing me out on that one.
So where does this leave Lu's diet? Mainly fruits, veggies, meat (for Lu this means bacon), gluten-free grains (like rice- not that she eats rice but she can have rice milk, rice dream ice cream and rice flour), eggs and soy. And the things she can't eat: wheat, all gluten grains, dairy, all nuts, fish and shell fish. Now that she is finally sometimes showing something of an interest in the food the rest of us are eating, we have decided to all go gluten, dairy, fish and nut free. Though we may still sneak in a bit of sushi on a date night if we have a babysitter. For those of you who know me well, you know how hard it has been for me to give up my beloved fluffy, crusty loaves of fresh and fragrant sourdough, not to mention the occasional beautifully baked and layered butter croissant. And how hard it is for me to ever actually get my 5 fresh a day. I've been doing lots of experiments with the Vitamix to make drinks and soups that get us the nutrients we need. It's an on-going experiment. If anyone out there has suggestions for amazing allergenic recipes that kids will love please let me know. I'm only an ok cook and an even worse baker, but Stew and I are both pitching in to try to give this our all. Who knows, maybe we will manage to lose some weight and get healthier in the process. One can only hope.
Don't get me wrong, the feeding tube is a miracle that saved her life, got her back on the growth chart and put enough weight on her to help her look like any other kid a year or so younger than she actually is (rather than a survivor of famine), and for all of that I will forever be grateful. But now that she is going into kindergarden NEXT WEEK (pardon the capitals but I'm kind of freaking out) I want to get her to the point where she can sit down and eat lunch with the other kids instead of needing to be hooked up to the feeding tube.
This won't be a problem this year because our team has decided that Lu will do half days of kindergarden so she can continue her intensive ABA Discrete Trial Teaching program at home in the mornings (this is where all of her skill acquisition has been going on all along), and then will attend school after lunch. So we do a tube feeding before she goes to school and another when she gets home from school, easy-peasy. But we are hoping that by the the following year, when she will be going to kindergarden for full days, that we will have found enough foods for her to be able/willing to eat a by-mouth lunch that will sustain her though the afternoon.
The problem with the food trials is that so far, only egg and soy have gotten the ok from her GI doc. This summer has been a disaster of trying first dairy, then non-peanut tree nuts. It has been amazing and horrifying to watch the way the worst of the old autistic behaviors have come back in reaction to the foods. I've realize that so many of the odd stiff-muscled movements, hyper-active jumping, spinning, vomiting, the extreme levels of verbal noise-making (from the quieter moaning, whimpering, twittering, and throat sounds, to maniacal laughter/giggling, yelling and screaming), and even hitting her own head are all responses to internal pain. The most amazing thing has been that for the first time, she has finally been able to add in the telling and imploring "Ow!" when she looks at me and hits her forehead with her fist. And after seeing her recover and what she is like when she is not in pain, I feel we have finally confirmed that these are not just autistic traits that she does at random (like we were told they were), these are both her reactions to pain and her way of trying to tell me she is in pain. At one point the other night she even said 'help me'. Do I even need to say how badly I wanted to make it all go away? But all I could do was put some children's tylenol in her tube and hold her as she twisted and twitched and eventually fell asleep.
It has been so measurable this summer, both with the dairy trail and the nut trial, the difference in sleep disturbance, self stimulatory behavior, attention, compliance, and even this small bit of self injurious behavior in hitting her own head, oh and the return of the terrible vomiting, that we just have not been able to go through the full 90 days to get to the endoscopy at the end of these food trails. We can see how badly she is reacting, so we stop. It's hard to believe a bit of inoffensive almond milk can have such and extreme effect on someone, but there you go. I just hope it all wears off before she has to start school next week.
Just to clarify: I do not believe that changes in diet in any way 'cure' autism. However, I do believe that if a child has a condition like Lu's EE that causes pain which the child is unable to express verbally, and changing the diet removes that pain, then I do believe that it can affect some of the behavioral characteristics associated with autism. Thanks for hearing me out on that one.
So where does this leave Lu's diet? Mainly fruits, veggies, meat (for Lu this means bacon), gluten-free grains (like rice- not that she eats rice but she can have rice milk, rice dream ice cream and rice flour), eggs and soy. And the things she can't eat: wheat, all gluten grains, dairy, all nuts, fish and shell fish. Now that she is finally sometimes showing something of an interest in the food the rest of us are eating, we have decided to all go gluten, dairy, fish and nut free. Though we may still sneak in a bit of sushi on a date night if we have a babysitter. For those of you who know me well, you know how hard it has been for me to give up my beloved fluffy, crusty loaves of fresh and fragrant sourdough, not to mention the occasional beautifully baked and layered butter croissant. And how hard it is for me to ever actually get my 5 fresh a day. I've been doing lots of experiments with the Vitamix to make drinks and soups that get us the nutrients we need. It's an on-going experiment. If anyone out there has suggestions for amazing allergenic recipes that kids will love please let me know. I'm only an ok cook and an even worse baker, but Stew and I are both pitching in to try to give this our all. Who knows, maybe we will manage to lose some weight and get healthier in the process. One can only hope.
Saturday, July 21, 2012
How to get kicked out of preschool without even trying
Last Monday was Myffy's first day of school at a new preschool program. Her first day, and her last.
I was excited. The place is called Gartendale and it is the kind of place you search around for and pick out and think this looks like a really great, loving, nurturing, fun kind of place for my very special, very sensitive little one to spend time with her peers. It's Waldorf inspired so it's all about woodlands and fairies and imagination with no academic goals at all for the preschool age. But they do require kids be potty trained, so we started potty training the day we finished taking our service dog boot camp practical test and passed (!!! I've been meaning to write a post on this but have 500 awesome photos to sift through and choose from so it's in the works).
The intensive potty training week turned into two when we both got sick, again, and then to three weeks of us spending pretty much every minute of every day together, having fun but staying close to the potty. And she did it! I'm so proud of her. She loves picking out a book and going to sit on the potty now. I figured ok, she's all ready to go!
We arrived early and I stayed with her for the first 45 minutes or so, walking her around, showing her the place. She remembered it from our visit a few months ago and immediately wanted to go outside to swing. When I left she got upset. I wasn't surprised. Changes to schedule and new environments are difficult for Myffy and our intense time together made it even harder for me to leaver her anywhere. I had warned the teacher about Myffy being in AZEIP, getting Early Intervention and the concerns we have about her behavior in terms of autism. She called after about an hour to let me know things were not going well. And then again about an hour and a half later. She suggested I come get Myffy now, which I thought was fine. We'll start with a short day and slowly work her up. We did that with Montessori too. What surprised me was that she and Myffy were sitting outside on a bench with the bag of Myffy's things in it when I got there. Including her tuition check.
Flashback to trying to put Lu into another really lovely little montessori program at Bambini a bit before she was three. With that place we never even got to the tuition check. At our first visit the teacher very bluntly told me that Lu's needs were far too great for their staff to handle. At Bambini I was surprised because I knew of another autistic boy who went there and asked about it but was told that Lu's needs were far greater than his. I even offered to provide one of the habilitation workers from our home ABA program as a one-on-one aide at my own expense and still they refused.
This was a surprisingly big blow. As parents we are the consumer in so many ways, always trying to find the best car seat and ways to diaper and feed our kids. We want the best toys to stimulate their curiosity and great books to instill a lifelong love of reading. With schools I felt like I was shopping for the very best school program to fit my children's needs. Instead it turns out the schools are shopping for the very best kids to fit their programs' needs. It looks like neither of my sweet, precious and totally awesome kids fit in.
When this happened with Lu I broke down and cried right there right in front of the teacher. I was still so raw from the diagnosis, still so scared and so uncertain. With Myffy I managed not to cry until I had driven away, but it was still a shock. Myffy is so good at passing for normal so much of the time. Thanks to spending the past 19 months doing 3 hours a day 5 days a week of intensive one-on-one behavioral intervention, her verbal and conversational skills have skyrocketed. She is potty trained before three, she can sing her ABCs and count to 10 and knows her colors. In a couple of areas she has now surpassed Lu in skill acquisition, which is both awesome and heartbreaking at the same time. I can't tell you the number of people who have spent an hour or two with Myffy and declared her completely normal and asked me what am I worried about. And I am so proud of her for all of her accomplishments. I know that the people who think she is totally fine are being nice and complimentary, but I also want to acknowledge what she's been through. I saw the early signs of regression. I saw it when she lost eye contact, when she stopped turning to her name, when she became unresponsive to all requests and stopped using words that we knew she could use. I saw it when normal baby crying/upset turned into the neurological force of nature style meltdowns that become completely detached from their trigger and can easily last three hours at a time. Because the thing about my two kids is that while Lu can pass for typical only for short periods of time when she is at her very best- calm and happy, playing quietly, not stimming or flapping or pattern walking and no one places any demands on her; Myffy passes most of the time and only doesn't pass at her very worst.
I do get it. I get why these schools don't want them. I know my kids. I know the difficulty of handling their behaviors when they have problems. We even have special names for some of them:
wobbler: a major and extended meltdown
baby pterodactyl: the high-pitched scream that blows Stew's hearing aid
riding the motorcycle: a funny stiff-muscled arm motion Lu did in the crib that developed into flapping
spinny-spin: incessant spinning, usually under a ceiling fan or florescent light
doodley: verbal stimming (repetitive babble)
When things are hard to talk about, sometimes it helps to try to make up your own code for talking about them. I guess I just thought that what I have learned to deal with at home, surely education professionals have strategies for dealing with in their classrooms. But this really isn't true. I look at all of the college students that are currently in and have passed through Team Tallulah (our home-based ABA therapy program), receiving extensive training in Applied Behavior Analysis through our BCBA in Discrete Trial Teaching and training in Pivotal Response Teaching through sessions at the Southwest Autism Research and Resource Center with Lu in Phoenix and I can't help thinking that these girls have so many more tools and skills for dealing with behavioral challenges than your average teacher, especially at a private school with no special education program. I am excited for all of them to go on to their future careers with this knowledge and really make a big difference in their fields and in the lives of other special children.
In the end this experience has made me feel really appreciative of our pretty amazing public school system and the montessori that Myffy has been attending for the past year. Public Schools don't have the luxury of rejecting kids who have challenges and who will require more time and more resources in order to access the same education that typical kids can access on their own. Lu's experience in the Flagstaff Unified School District so far has been extremely positive and supportive and continues to be as we head towards kindergarden with a full time, ABA trained one-on-one aide and a service dog in tow. And even though I have felt that Myffy has not been entirely happy at her current school (she refuses to speak there and is always off on her own in a corner when I go to pick her up) and that the teacher/student ratio is too high for her needs, I still appreciate that they have at least been willing to have her in their with all of the rest of her peers and have allowed her the time to adjust to schedules and learn routines. Of all categories Myffy scores lowest on social skills and desperately needs access to typical peers as models and to learn appropriate interactions. If the only kid she ever interacts with is Lu she will only learn about Lu's way of interacting with her.
Myffy will be having a transition meeting with the school district before she turns three in September and ages out of the Arizona Early Intervention Program. We have decided to have her re-assessed by Lu's diagnosing psychologist before that meeting. She already has the categorization of "At Risk for Autism" because of displaying regressive markers at 16 months old and having a sibling with a diagnosis of autism, but now that her behavioral issues have become barriers to her attending schools and interacting with peers we want to make sure we are able to provide her with the right supports moving forward in school. Her current school has brought up issues of self control and regulation (tantrums), rigidity of routine (not able to adjust when something unexpected happens), lack of spontaneous speech and repetitive behaviors. Everyone who interacts with her on a daily basis agrees that she is doing great all things considered, but that she does still have some significant challenges to overcome. And like we with Lu, we are determined to get her the supports she needs to overcome those challenges as much as possible.
Saturday, June 9, 2012
Dohanna Day!
Today is the day! Dohanna Day! Dohanna should be arriving at about 10am to see her new home, meet her new housemate Wheezy, and start to settle in. I am so excited. It seems like it has been such a long journey getting here, first getting used to the idea of a service dog, learning all about the benefits, thinking the cost was out of our reach, getting the prescriptions and letters of medical necessity, filling out all of the applications and being accepted, fundraising, being shocked by the amazing, overwhelming response of friends, families and generous strangers, raising the full amount in just over 3 months, meeting all the amazing dogs in order to get the very best match for Lu, and now finally, here we are, the day we get Dohanna. Dohanna Day! I can see us celebrating June 9th every year just like a birthday.
I think Lu is excited too. We have been talking to her about Dohanna some, but not too much because when we were last in Phoenix for her week at SARRC we told her one evening that Dohanna was coming to visit her at the hotel and Lu wanted to see her so much that very minute that, well this happened:
I wanted to take a video of it because other than wanting her Mom or her Dad when something sad or scary was going on (like the hospital or feeling sick) I have never heard her ask over and over for anyone. She didn't tantrum or scream, she was just weeping and calling for Dohanna again and again. It was so sweet and heartbreaking and helped me to feel sure that this really is a good match. Tallulah was longing to be with Dohanna.
And Myffy seems to be pretty down with Dohanna too! We will all be spending the next two weeks in Service Dog Boot Camp where we will learn to be service dog handlers and trainers. This is the last hurdle because if we don't pass the tests at the end of the training period, we do not get to keep Dohanna! But we will study and work hard and make sure that we pass because we have come way too far to not keep our girl at this point! I'll try to post some photos and videos as we go along so stay posted!
And thanks again to all of the many wonderful people who have made all of this possible with your donations and support. We love you!
Saturday, May 26, 2012
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.
Friday, May 11, 2012
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!
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.
Friday, March 23, 2012
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!
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.
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