I don't post too much about my son's special needs for several reasons.
The first, and most obvious, is my desire to respect his privacy. Although he couldn't care less at this point, the time may come when he isn't comfortable with my sharing too many specific details about his life online.
The second reason is a little more complicated. We're sort of in diagnostic no man's land. The developmental pediatrician keeps throwing around phrases like " possible PDD," or "maybe high functioning Asperger's," but no one actually wants to put the pen to paper and make the call.
In one sense, it doesn't matter exactly what we call it. We're not trying to negotiate for services through the public school system, so here at home, we can call it anything or nothing at all, and just deal with issues as they arise.
In another sense, we're feeling sort of isolated. Among (neorotypical,) same age peers, it's almost immediately apparent that L is different. He's smart, and lovable and funny, but fundamentally different. He's the proverbial square peg.
Oddly enough, we find that on the surface at least, we don't exactly fit in with the autism community either. L is verbal, (really verbal.) His social issues, while very real, pale in comparison with what many autistic children face. I've had people say that he isn't "severe enough" to be autistic, an opinion which I think can be explained by the fact that many people have sort of narrow ideas about what an autistic person looks like, sounds like, acts like. (Rain Man, anyone?)
It's been hard to find other people who "get" us, and what our life is like.
I recently stumbled onto the #youmightbeanautismpartif hash tag on Twitter, and although I know it sounds silly to say so, I feel like I've found "our people." They "get" it. They understand the oddball, quirky parts of our life that "regular" families are totally unfamiliar with, like a child that picks paint off the walls, and can't eat food that touches, or is "sticky," or is shaped "wrong." The get the bigger issues like sleeping with one eye open for years, because your child rarely sleeps, and may wander off if they wake up alone, or feeling that you'd do nearly anything to have a day "off," but you can't, because there just isn't anyone who understands your child well enough.
It's nice to be understood, and to realize that you're not the "only" one.
If you have a child somewhere on the spectrum, I highly recommend you follow the #youmightbeanautismparentif conversation on Twitter.
Where do you get your parenting support?