Archive for July, 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.