Tomorrow is the long awaited evaluation at a neurodevelopmental pediatrician we've never seen before. Actually, we haven't seen a neurodevelopmental pediatrician for about 2 years because right after the autism diagnosis in 2010, I applied for SSI as was recommended, then promptly lost our health coverage as a result. I was lucky to just find a regular pediatrician after that. To get a referral to a specialist took awhile. And we've been on waiting lists for all the neuro ped clinics ever since!
So 2 years of strange, ever-changing spectrum behavior, and just me and Google to try to troubleshoot it. We've had OT but those people just want to "brush" away all the issues, or if that doesn't work, stick her in the swing, or that doesn't work, here's a tub of dry beans. There are no two cases of autism alike, so what's with all the one-size-fits-all therapies?
It feels like the night before a midterm or final exam, or like a job interview where I will have a short amount of time to recite a bunch of qualifications of what makes Little Squirrel autistic. With lower functioning kids it is obvious and parents probably don't have to "prove" it. But with high functioning kids it's difficult because those few minutes in front of the doctor might be the best ones of the whole day! So it's up to me to relay accurate information to describe the atypical social behaviors, the OCD, the anxiety, the tics, the sensory reactions, etc.
And even in the atypical crowd we are "atypical." There's just SO MUCH weird stuff she does that I often don't know where to begin. I often get flashes of all the strange phases we've gone through:
- the fear of old ladies phase
- the fear of her own name and obsession with nicknames phase (the boys names from Magic School Bus: Ralphie, Arnold, Carlos)
- the forever it took until she learned to speak in first person "help me", instead of "help you"
- the "are you talking about me?????!!!!" hysteria when hearing the "she" pronoun
- the insistence to carry a beat up old dvd box or vhs movie box or a board book (or 10) everywhere we went like some kids carry a stuff animal or doll)
- the frantic kicking of the seat at every stop light, and then when speech came, "DRIVE IT!"
- the demands that I repeat everything she said, and RIGHT NOW
- the 3rd birthday where I was still buying diapers and formula for a kid who won't eat or potty train, with no hope in sight
- the list of hated words that had to be avoided for some arbitrary reason I'll never know: people, thank you, included, just, difficult, peek a boo, etc
- the allure of lying down in doorways of stores (especially automatic ones) or while waiting in a line
- the first 3 1/2 years that she didn't seem to understand a darn thing I said...
We've moved on (see I'm still trained to avoid the "she" pronoun and may be stuck in the "we" tense forever) from a lot of these finally but of course it's like the whack-a-mole game, where we just have new things to whack now.
Now that Little Squirrel is in kindergarten, I'd like to find some help with her social problems. She gets 30 minutes a day in the special ed room when she practices social scenarios such as appropriate reactions and touching (or not touching) and good classroom behavior, etc. But that's all geared for keeping her under control at school, which they seem to have a handle on pretty well. What I need is help outside of school, for situations like approaching other kids to play (and not scaring them away); strategies for self control in public; listening to mommy without throwing show-stopping tantrums; if there is any way to speed up the auditory processing because I am so tired of constantly repeating myself (it's worse than hanging out with my 82 year old father!) and what kind of pills are in our future--and I do mean for the both of us!
Well, we shall see. I've been in this long enough to know I can't expect any magic fixes. Yet my ongoing prayer has been for God to guide me to what Little Squirrel needs, so I know I can trust this course whatever it may be.