Saturday, July 21, 2012
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!
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.
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.