You Might Be An Autism Parent If

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?

A Halloween Recap

Mario Pumpkin Stencil, from  http://www.zombiepumpkins.com/

Holidays are tough for kids with SPD.
(Actually, as an adult with some sensory issues, I confess that last night was a lot for me to swallow too. That boy and I are a lot alike. )
L was overwhelmed with the 20ish people in our small house, with the noise, with the chaos that most people would perceive as festive.

Severed finger and spider cupcakes, anyone?

There were several meltdowns about whether or not to wear a costume, to go trick or treating, etc. It must be hard to be a little kid, and feel so conflicted about things that are supposed to be fun. In the end, he wore half a costume, and tearfully went trick or treating of his own accord.  He later reported that he had fun.
V, the polar opposite, was thrilled to get to dress up, thrilled to be the center of attention, excited to tell everyone "Happy Halloween!"
It's hard to know how to provide both kids, who have such different personalities, with what they need at any given moment.
I'm not sure we hit the mark this time. I'm going to be thinking about what we can do to make Christmas easier for L...

V, the self styled "Princess Toadstool," and "Super Mario"

On having a child with ADHD...

Allow me if I may to venture outside of my usual domain for a minute.

I keep reading articles/websites/tweets about the supposed over diagnoses and treatment of ADHD, particularly in little boys. The argument goes that little boys are supposed to be energetic, rowdy, full of life, and that parents, unable or unwilling to manage them, are quick to jump on the ADHD bandwagon, and eager to medicate,  in order to bring their boys under control.
I have no doubt that children are wrongly diagnosed with ADHD, as people of all ages are regularly misdiagnosed with all sorts of things. ADHD symptoms can also be attributed to any number of other issues, and ADHD often appears co morbidly with issues like ASD, or SPD. It's complicated. I'm no doctor.
I have to say though, that I resent the tone of these statements.
My son has ADHD. He's not merely an energetic, lively little boy, and I'm not taking the lazy way out, medicating him into submission so I can have more energy for watching talk shows and eating bon bons.
Before seeking treatment for my son, he was virtually unable to carry on sustained play, unable to carry on a normal conversation. Words and activity seemed to come exploding out of him, like water from a fire hose. He was helpless to control it, even if he wanted to.
After waiting several years for him to outgrow some of his issues, a period in which things got worse instead of better, we finally resigned ourselves to the idea that something was really going on. We had him evaluated, and found that among other things, he has ADHD. After discussing treatment options,we consented to trying him on a low dose of medication, and were frankly amazed when he showed an almost unbelievable level of improvement.
Contrary to what what these articles would imply, he's not a little zombie, vegging out in front of the tube, drinking soda and eating ding dongs. He's still an incredibly active little boy.
The fire hose is more like a water hose now. Manageable.
He's able to play now, able to listen, able to learn, able to take advantage of all the God given smarts he already had, but wasn't able to access before. Now other people are able to see what we already knew: how funny, and smart, and sweet he is.
I hope that some day he'll be able to discontinue the use of his medication. It has known, and probably unknown side effects, it's expensive, it carries a stigma. My hope is that as he grows older, he may be able to learn some behavioral strategies to help him be able to overcome his challenges. This may or may not actually be realistic.
Until then, we'll keep doing what we think is the best thing for our son, in a world that isn't willing to accommodate the differently abled, and yet is full of suggestions about how we should parent them. (How many times have I heard that "what he really needs is a spanking," or "what he really needs as an organic, GFCF diet," or "what he really needs is more time outside." And on and on. What he really needs is for his loving parents to do the best they can with the information, and medical advice that's available, depending on God for the rest. And that's what he's going to get.)

By the way, if you're wondering what inspired this post, it was this article at the Huffington Post, and this flippant Tweet by the National Wildlife Federation, (whose Tweets I usually enjoy.) There have been many others along this same vein.