Monday, November 26, 2012


The rest of our California trip:

After 2 days at Disneyland we took a break from the park to do a couple of other LA area things. Sunday morning we drove up to Pomona College to visit an old friend and see my Dad's skyspace on campus in the courtyard by the geology building. I had visited the site back in 2007 when it was still under construction but had never made it back to see the completed piece. I was glad we went. It's a real stunner. Any James Turrell fans out there should put this on their 'must see' list for sure.

Unfortunately Lu was pretty freaked out on the drive there and as we drove around campus to park. To be honest, she tends to get really anxious and freaked out whenever we drive around in a city with big buildings. Parking garages in particular seem to set her off. She isn't able to explain why this is to us yet, but my best guess is that the main multi-story building with parking garage she has ever been in is Phoenix Children's Hospital with the Flagstaff Medical Center a close second, both of which have been the sites of numerous appointments, tests, procedures and surgeries. She reacted to the beautiful buildings at Pomona in much the same way.

However once we managed to coax her out of the car and she realized that we weren't going anywhere scary, something beautiful and amazing happened. In the middle of campus there is a long, lovely green, surrounded by tress and buildings with no cars in sight. Because Lu's instinct is to bolt whenever there is open space in front of her, for her own safety she has never been allowed to walk through a door to the open outside without holding onto someone's hand and more recently also holding onto Dahanna's leash.

It is my acute and ever-present terror of her coming into contact with a moving vehicle that is the cause of this. This is not an unfounded fear. We had too many early close calls to ever risk being negligent about this. But at the same time, it is heartbreakingly sad.

Sometimes she seems like a colt stuck in a stable who desperately wants to just get out there and run. I sometimes wonder if she would do so much jumping and pattern walking if she were just able to get out there and run.

It is my hope that as she gets older, with the help of Dahanna, she could learn to do track and field, or maybe even long distance running, if there is a way to keep her safe while she is doing it.

 Because there on the Pomona green, we let her go and she got a taste. Freedom. Her happiness was palpable. She loves to run.

I don't mean to say that she has never run before, she gets to run at recess and during PE and at the completely fenced in park where we go to play in Flagstaff. And we try to give her lots of physical activity with both the big trampoline in the back yard and the two small ones we keep in the house. She goes for pony rides and outings. It's not like she never gets to do anything or go anywhere, it's just that someone is always holding on to her or is right there within arms reach to slow her down if she gets going too fast.

After a good old run at Pomona, we left to meet some of Stew's friends at the beach. We went to Huntington Beach which the GPS said was only 15 minutes away from our hotel. Somehow it took us over an hour to get there with Lu getting nervous as the drive went on. But when we finally got there, another revelation! It was a dog beach so we decided to let both Lu and Dahanna have a break from their leashes. This was a very difficult thing for me. Back when Lu was first being diagnosed I had this recurring nightmare where I was at a beach, knee high in the water, holding Myffy in one arm and holding Lu's hand with my other hand. Suddenly, out of no where, a huge wave hit us and we were all knocked back into the swirling water. I managed to stand and pull Myffy up above the water but I had lost hold of Lu. My instinct was to dive back in to search for her but I was afraid of drowning Myffy in order to try to save Lu. I would wake up thrashing in bed in a sweat as if swishing my arms through the water searching for her.

I told Madison about all of this before we got to the beach. I told her that I would need to stay with Myffy and I was trusting her to always have Lu. She and Lu worked it out that as long as Lu ran along the beach Madison would run along side her, in between Lu and the waves. Lu could go into the water if she wanted but had to hold on to Madison's hand. It worked out well. Lu ran to her heart's content, she and Madison both got wet, and Myffy and I played on the beach while Stew had a chance to visit with old friends and do some wading out into the water with Lu as well.

I think as much as taking the kids to Disneyland was a triumph for the family, taking Lu to the beach was overcoming an enormous fear for me. And I realized that sometimes my fears for her safety may be stopping her from experiencing life. We're not about to remove all of the safeguards we've set up for her, but at the same time, with the right people who I know I can trust, I think that it is time for me to start letting go just a little in order for her to discover more of the wonder and joy that life has to offer. Wind in her hair. Sea spray on her face. Pink-cheeked exhaustion. Freedom. Happiness.

Monday, November 12, 2012

WE DID IT!!! Our Autism/EE Disneyland Adventure!

Well we did it. We took our kids to Disneyland! A year ago I didn't think a trip like this was possible. Back in January I even wrote this post called Disneyland and the Dog about how we couldn't imagine being able to take our kids to Disneyland before learning about Arizona Goldens' Autism Service Dog program. And now, less than a full year later we have accomplished an enormous family goal! We have gone on our first completely non-medical family vacation in 5 years and did the fun kind of things that other families do with their kids.

There were a few hiccups and tough times along the way, the drive was long and mornings and evenings so off schedule caused a fair bit of anxiety for the kids, but the actual time spent in the Disneyland park itself was so much better than I could have hoped for.

We decided not to buy multi-day passes ahead of time because I am so used to the things that we expect the kids to like the most turning out to be too difficult or traumatic. I could just see us getting there and the crowds and noise and motion being too much for the kids to handle for more than just an hour or two. I fully expected to only stay 2 or 3 hours on the first day. But thank goodness we planned ahead and brought Lu's tube feeding equipment and food with us in back packs into the park. We stayed for more than 7 hours and walked more than 5 miles inside of the park for 2 days in a row (thanks fitbit step tracker)!

 I need to give some credit where credit is due here and a ton of credit goes to the lovely Madison, Tallulah's one-on-one school aide and one of her home ABA interventionists; as well as credit to the also lovely Dahanna who was a total star! The way we worked things was that Madison mostly was in charge of Tallulah and Dahanna, walking with them both, giving Dahanna commands, holding Lu's hand in one hand and Dahanna's leash in the other, keeping the two leashes from getting entangled and the rest. I was in charge of Myffy and had a back pack with just the feeding pump, bags, tubes, adapters and syringes in it which is not very heavy in case I needed to run after Myffy or jump in to help Madison with Lu. And Stew was in charge of everything heavy and everything else; the stroller, the cold bag with Lu's food in it, and another back pack with all of the other stuff we might possibly worst-case-senerio need.

Dahanna did a great job of navigating the crowds, waiting in lines, keeping our group together like a sheep herding dog and riding all of the rides with Lu but one (that one was the Dumbo ride which I was afraid to put her on because I had this momentary vision of her hopping out of the Dumbo when it goes up and down in that shakey way, it was the first ride we tried and it took me awhile to realize that she can handle pretty much anything we can). The people around us marveled at her calm demeanor and professional air as she hopped in and out of all the crazy shaped ride cars and never even batted an eye when the Pirates of the Caribbean ship plunged down into darkness and water sloshed in, getting her pretty well soaked by Lu's feet.

One thing that I was really impressed with on this trip that I never even noticed as a kid was how alert and awesome the Disneyland Staff are. Maybe this was accentuated by having the service dog which is a very visible sign of a kid with a disability, and maybe it was having the guest assistance pass which put us into the disabled lines, but even when we were just walking around and trying to get food I felt like the staff were constantly watching, ready to help and totally on the look out for kids in distress.

When we went to eat the chefs came out to talk to us about the kids' food restrictions, and even though Lu never actually ate anything by mouth the whole time we were in the park, I so appreciated their willingness to make up special food that my kids could safely eat. We got gluten free rolls, BBQ meats that were not dredged in flour and had a special sauce, pancakes and burritos that were gluten and diary free. It was great. Myffy ate a ton of everything and hopefully next time we go Lu will be interested in eating as well. Normally Lu does not like doing her tube feeding anywhere but in her own bed at night, on her beanbag or on the sofa during the day, and she will let us coax her into feeding at the dining room table with us as we eat dinner for 15-20 minutes usually before asking to  move to the sofa. So even though we brought her feeding stuff with us, I was pretty sure she would want to go back to the hotel. But she didn't. She let us hook her up right out there in public at the tables of the Disneyland restaurants. And she hardly even seemed to notice.

On the first day there it wasn't until half way through lunch that I realized that I'd completely forgotten to bring Lu's ipad which is usually the only way we can get her to sit with us through a meal. I felt a moment of panic but then looked around and realized that everything around us was better than a life-sized ipad. All day long Lu's face had the most amazing glow of happiness. And once she got used to the routine of waiting in line and then going on rides, she eventually didn't even seem to mind the wait too much. Especially once she got tired and wanted to sit in the stroller while waiting.

We rented the stroller with Myffy in mind because her legs are so short and she is a pretty slow walker, but she would not go in it even for a moment. She wanted Mommy up and no one but Mommy. So I carried her. All the time. For over 7 hours and over 5 miles a day, two days in a row. And boy was I feeling it by the end of the second day. I was so glad I could look forward to that chiropractor appointment I'd made for a couple of days after we got back. I made a mental note to schedule a massage as well. But aching backs aside, it was an awesome trip and we never even came close to my worst fear of losing a child at Disneyland.

It was a couple of long hard days, and Myffy didn't quite make it without a little nap in line for It's a Small World (which I think we rode 7 times during the two days), but all in all I'd call our Disneyland Adventure an unqualified success!

Tuesday, October 9, 2012

Myffy's Birthday, a new medical mystery and getting ready for Disneyland!

My sweet little Myffy is now a big three year old girl! Turning three has become an interesting rite in our family because besides being a significant milestone for any child, at three our kids also age out of the Arizona Early Intervention Program and age into a whole new set of agencies and services. Especially now that Myffy has her official diagnosis of ASD.

Myffy's party was super fun. We decided to keep it small and a bit on the down low since that is what usually works best for both kids. In the past when we have packed the house for a party that is usually when Lu gets overwhelmed and needs to retreat, and even Myffy seems to prefer smallish play dates to having tons of people around. And this way everyone got to have a couple of turns on the pony.

It was really nice to see Lu and her best friend from school playing together. Can I tell you how exciting it is to write 'best friend' about Lu? But it's true! They hang out at school and have been having regular play dates on the weekends lately. The best thing is that her friend seems to really enjoy Lu's company without getting frustrated or bored by the lack of conversation. They jump on the trampoline together, paint together, draw together, swing together, run around together and basically just hang out, together! It's so great. And at Myffy's party they rode Lu's pony together.

As the Birthday Girl Myffy of course got lots of pony rides! In the past she has only seemed vaguely interested in the pony, sometimes wanting to get up with Lu if Lu is riding, but never all that interested in riding herself. Today all that changed. Which is probably good since Lu is going to out grow Cinnamon someday and like all other things between siblings, Cinnamon can get handed down.

I love how happy she was to be up there and she even said 'yeehaw' and 'giddyup' like Jesse from Toy Story, and then said 'more riding horse Mom,' when she wanted another ride. Gotta love an expanding vocabulary!

In the midst of all the activity of Myffy's birthday and starting her new school with her own IEP and services and everything, some new things have come up with Lu. Lu seems to be having head aches. Regularly. Pretty much daily. But not constantly. Intermittently. She shows her distress by pressing her fists against her forehead, sometimes hitting, sometimes pressing her palms hard against her eyes. She has started hitting her head on the wall again which we haven't seen in ages except for a little bit during the failed food trials last summer. She has also been saying "eyes" a lot while opening her eyes wide as if to show me. I have looked for something in her eyes but have not seen anything. Sometimes she rubs them. Often she cries. And she is grinding her teeth loudly. The teeth grinding is actually the first thing that we noticed. It's been going on for several weeks. We saw the dentist (an ordeal in and of itself) who saw nothing in his exam to make him think it was dental pain, but suggested we get dental xrays- something they have never been able to accomplish with Lu before. We saw a new doctor who had several ideas but wanted dental xrays first. A dose of valium and versed later we were able to get decent xrays on the second try. The dentist was so thrilled with actually being able to work on her that he asked that she have versed before every appointment. Sigh. We also saw her GI doctor to have her mic-key button replaced. Which is completely terrifying to Lu. That doctor also suggested that we sedate Lu before every clinic visit. Even just the check ups. I'm really struggling with all of these requests to medicate her. I understand why they ask. She is difficult to examine, difficult to work on, distressing to other clients and clearly expresses her terror. But seriously, how much sedation can one little 5 year old take? I'll probably come back to this in another post.

But back to the headaches: her dental xrays came back with a little decay showing, not enough to cause pain and not even enough to warrant filling right now. The dentist suggested filling it at her next cleaning which he thinks he can do with versed. Otherwise we have to book her into the hospital with full anesthesia to have a small filling done. The new pediatrician wanted to rule out dental pain before xraying the sinuses and then moving on to other imaging, like MRI or CAT scan. And then there is the possibility that she might be developing migraines. Both her paternal grandmother and a paternal aunt have migraines. Which of course won't show up on any of these scans. The symptoms are affected by a dose of children's ibuprofen which I though would rule out migraines, but the doctor says not necessarily.

This is one of those many, many moments when I wish that Lu could communicate enough to at least tell us a little more about this pain. Where is it? What does it feel like? Is it there all the time and just gets worse and better or does it completely come and go? Is it all of a sudden or does it slowly build? Is it a sharp pain, or more like pressure?

Oh and then yesterday I got a note from school in her bag saying that they tried to test her eyes and recommend that she see an eye doctor. One more possibility. If she has vision problems, that could be causing pain too, right? So today my list is full of new appointments to make and new conversations to have with various doctors. And probably a call or two to the new secondary insurance company since we were informed last month that Lu's old Medicaid insurer Capstone (who we never had a single problem with) was suddenly no longer her insurer.

In more exciting and upbeat news we are also starting to prepare for our long awaited trip to Disneyland! I've ordered Lu's tube feeding supplies to be delivered early and her prescriptions as well. I've started making checklists for packing to make sure we have everything we will need for the kids and Dahanna for as many contingencies as I can imagine ahead of time. I need to find out where the closest stores that carry allergen free foods are relative to the hotel and figure out which foods to just bring with us. I'm nervous but excited. I really hope they will love it. Fingers crossed!

Wednesday, September 5, 2012

Myffy's Diagnosis and Our Golden (Retriever) Summer

Well, it's official. I have the document in my hand. I knew it was coming. I knew what it would say. If I had any doubts they vanished when I talked to the psychologist last week and set up today's appointment. I asked her if she'd scored the tests yet and did she know. I couldn't stand anyone else knowing if I didn't know. So she told me. Autism. An autism diagnosis for Myffy. Here we go all over again. At least I didn't break down in sobs on the psychologist's sofa this time. Still it was hard to breathe and swallow on the ride home. The hard rock of autism sits deep in the middle of my chest. She's still my beautiful, funny, silly, awesome little girl. I guess I was just hoping that with all of the early intervention she'd been doing since she was 16 months old that we might have been able to alter the course enough that she wouldn't actually need a full and official diagnosis. I am thankful for every moment of therapy she has had, for all of the language and skills that she has gained during a stage when Lu was quickly sliding steep into a very deep regression. I feel quite certain that if we had not started ABA therapy when we did Myffy would likely be now where Lu was at this age. Myffy has benefitted from all that we have learned going through this with Lu. But beneath it all, the autism is still there. So we continue. The next month will be filled with further applications, tests and evaluations to get a special education preschool placement and state services for her therapy program. Oh and, last weekend we got Myffy her own dog.

If you are our Facebook friend and have seen the photos we have been tagged in lately, you may be wondering if we have completely lost our minds. First in June we get Dahanna for Lu and go through a grueling two week boot camp, and now from our photos it appears that we are doing it all over again for Myffy this time. Let me take a moment to explain:

First of all, things with Lu and Dahanna have been going great! Since June we have watched Tallulah and Dahanna bond and develop skills and routines that have helped Lu to weather restaurant meals, changes in schedule and most anxiety-provoking for us all, the transition to Kindergarden. Dahanna loves working in school and is so good about lying quietly under the desk until it is time to go to another center or circle time or art/music/PE/recess. She's a big hit with the kids and has already helped Tallulah to start to make friends! It has been amazing and awesome and completely gratifying, but even as Lu's behavior has become more predictable and easier to manage with Dahanna in the mix, things have become progressively more difficult for Myffy.

During Lu and Dahanna's Boot Camp back in June when it was so important for them to start their relationship off right, we quickly realized that even more often than Lu melting down and causing us to abort trips and outings, it was now Myffy who had become the wrench in the gears. Lu would be doing great holding her leash and even trying to talk to Dahanna when prompted to give her commands, but when Myffy would scream Lu's first reaction is to cover her ears. Brian the Service Dog trainer came up with the great solution of teaching Lu to loop the leash over her wrist so she could cover her ears without dropping the leash, but still it make public access training difficult. In the end we made arrangements to go out and work with Lu and Dahanna almost exclusively without Myffy there. It was just too much to juggle practicing the new skills with the dog and managing Lu to also be managing Myffy too.

Then came Myffy's first/last day at that new preschool program where they kicked her out for a 3 hour screaming fit on the very first day. After that we started the reassessment process and as we went through the parent/teacher/caregiver interviews and answered endless questions about her behaviors I had this very familiar sinking feeling that I'd had when we did this with Lu which was, my god, why didn't we do this sooner? It was so obvious as we filled out the forms that yes, more than likely she would qualify as autistic. But then I reminded myself that yes we did, we did do this sooner, we did it back when she was 16 months old and then put her into an Early Intensive Behavioral Intervention which is exactly why she has all the skills that she does.

In the midst of all of this we kept in frequent communication with Brian from AZ Goldens about Lu and Dahanna and one of the problems that we kept running up against is that Myffy has gone completely dog crazy. She wants to constantly be in contact with Dahanna, she wants to hold the leash, she takes it form Lu, she is verbal enough to give the commands that she hears us giving Dahanna and in many ways it is interfering with Lu and Dahanna's work. Myffy has also started trying to interact with poor old Wheezy, our lovely English Pointer who deserves some peace and quiet in her old age.

Brain came up to Flagstaff one weekend in July to bring up two dogs to meet a couple who wanted to adopt one of them. He dropped one of the dogs off with the couple and brought the other to our house so he could do some tune-up training with Dahanna before the start of school. The dog he brought with him is named Carol and there was an instant and amazing connection between her and Myffy. In much the same way that Myffy's personality is different from Lu's, so Carol's personality is different from Dahanna. Carol's energy is explosive, she will play throw and fetch all day long, and she elicited the most beautiful squealing giggles from Myffy. After they left we learned that the couple chose the other dog to adopt and that Carol was still looking for a new home.

Fast forward a couple of months. After numerous discussions of what it would mean for our family and AZ Goldens deciding that since we have been so dedicated and diligent with Dahanna and Lu, they have allowed us to adopt Carol for Myffy! And while yes having 3 dogs does increase the crazy in our lives, we can see that this works for our kids, it only increases the crazy incrementally, and seeing Myffy this happy is worth a little extra crazy.

Carol (who we have renamed Carebear) was originally trained as a wheel chair assistance dog, which means she constantly picks things up off the floor and brings them to us. Myffy thinks it's hilarious. Over the years she has done animal assisted therapy, but was never placed with a client because of personality mis-matches or for some other reason. Carol has not been specifically trained for autism or specifically trained for Myffy the way Dahanna was trained for Tallulah, but Myffy's needs are so different from Lu's and because we have already passed all of the training and certification requirements we are getting guidance from AZ Goldens on how to train Carol to Myffy's needs ourselves and don't have to do a whole new boot camp for her. She is certified in case Myffy needs her to go to school with her or out in public with her in the future, but we will tackle each of those issues once we get to them. For now we are happy to have Carebear here along with Dahanna and Wheezy as part of our wacky but happy family. Welcome Carebear!

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.

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:

And then this:

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.