Friday, August 14, 2009

The Cult of the Label

When I realized we were going to have a clear diagnosis for Andy, there were feelings I was expecting. Relief. Understanding. Anger. Even confusion. But I was not expecting to feel like a Diagnosis Newbie all over again. Having to start from scratch, digging up research, trying to track down solid sources and information, trying to understand what this new label was saying about my child, and what it was telling me he needs. Perhaps I am not a complete newbie, though; I certainly know there will be pitfalls and woo out there, and the first step to avoiding a trap is knowing of its existence.

There is the extra hurdle in ADHD of most the public thinking the label itself is woo. Well, that's just dandy, ain't it? Even among special needs parents, most seem to scoff at the ADHD label. Autism awareness is currently semi-fashionable, and when you say your child is autistic, it is becoming less and less common that you have to defend the diagnosis. With ADHD, it is fashionable to respond with comments such as, "Well... you know, I think so many kids are over-diagnosed these days..." or "What do you expect? he's a boy!" or "Well, most kids can't sit still for five minutes."

You think autism is an "invisible disability"? Try ADHD.

Most of the time, Andy comes across as an energetic, vivacious, happy little guy. Then you learn he's very short-tempered. But is it a disability? In most situations in public, does a child need the skills that ADHD kids lack? The problem is when he needs to be to sit, focus, and socialize in semi-closed but not adequately structured and very noisy settings- say, a noisy cafeteria. A bus. A classroom. Have you been in a "normal" elementary school classroom lately? If I was five or six, I'd have trouble with the distraction and explosion of sensory input, too. It's like the whole room vibrates with color, imagery, motion. Wow. How is Andy going to be able to sit and listen to a story with so much stuff to look at in there? Where does one draw the line between "distractable", "distracted", and "ADD"? Where is the breakpoint between "energetic" and "hyperactive"?

Because all of these labels are a matter of degree. Even autism. "Spectrum" means you can be there and not have it getting in your way (and hence not be "disabled")- it is only when it causes trouble that you need a label. Its a fine line between ability and disability.

A generation or two before my own, Andy's energy and vibrance would have probably been an asset. A kid on a farm who gets up early and can go go go just needs a little channeling and guidance, and few prompts to get them into the routine of farm living. My family grew tobacco back in the day (as well as vegetables for the DC markets). You have to get up and feed the horses every morning, or they get hungry. You have to care for the fields, or you go hungry. There was structure and expectations and a need for energy and wiry strength and quick intelligence. Andy would have blended in and nobody given him a second thought. Perhaps his room would be messy, and his inability to focus been mistaken for a little laziness, but the energy would have probably made up for it. Heck, my house is a disaster and I'm not disabled.

However, Andy is not growing up on a farm forty years ago. He has to be able to go to school and participate in circle time, walk in a line, eat with his friends, play in a gym. He has to be able to organize his belongings, get to his classroom, and complete his assignments. Listening to a story means you have to be able to sit still and focus on the teacher for fifteen minutes. These are now skills to survive in society. These are the kinds of skills ADHD kids lack. Impulsiveness is not considered a virtue, and is considered a discipline problem rather than a neurological problem (facts be damned).

When you explain to someone that your child has autism, you get looks. Pity is a weird thing, especially when you don't need it. When you explain to someone your child has ADHD, its a different look. Something akin to "ah... you're one of those nutters. Go take a parenting class." Yes, they see you as part of the Great Medicalization Cult.

Unfortunately, getting services without a diagnosis is like trying to get a cat to fetch a stick.

Wednesday, August 12, 2009

Wordless Wednesday: Playing in the Park

Two Big Chickens in the Afternoon

In an attempt to get the boys to relax, and give me a minute to just enjoy watching them being themselves while taking a big breath, I wandered out to Grandma's house (that would be my mom's) with boys. Actually, it was a bit of a hectic morning, unexpectedly; my classes were all up in the air again, and I had to go straighten it out. I also had Andy's stuff to straighten out. Things are clicking along on all fronts again. (Yay!) So, breathing. It's a Good Thing.

Mom took Andy with her, and I went to get Joey off the bus. Another surprise- one of Joey's beloved (and practically new) crocs got broken at school. Joey doesn't do broken. He perseverates on it to anxiety meltdown. Just what I really didn't want. So we popped into a shop that fortunately had a pair in his size on sale. Disaster averted.

We then scooped up some Happy Meals (the boys love teenie beanies, and its the last day), and off to Grandma's we toodled, to slide on her big blow-up water slide and Sit. Down.

Blowing up the big slide is always an adventure. It is too heavy for us to move around, so once it is set up, there it stays. I pull the motor through a window (it can't stay out because- get this- it can't get wet.) Then I hook everything up, and turn on the switch. As it inflates, I chase the spiders off, and rescue several with my famous Spider Rescue Stick. (the only spiders I believe in killing around here are black widows. I don't like them in my house, but spiders eat other bugs like biting flies and roaches). Anyway, as I am rescuing a particularly large spider, Joey is saying, "snake! I see a snake!"

(How many of you just found yourself clinging to the ceiling?)

Grandma and I took a few minutes to see it ourselves, but there it was- I had practically stepped on it putting up the pool. Now with all the noise and bother of the search, it was poised for self-defense. A small, brown, diamond-mottled snake, with a swollen head... hearts stopped. Praise of Joey commenced. But I was now trapped in the pool with a long stick and a measure of distance as my only defense. Yes, folks, Joey had just saved us pain, agony, and possibly his and his brother's lives.

It was a copperhead.

We got the boys back to the porch, and I managed to get the pool turned off. But now we had a copperhead to deal with. When I was young, we didn't see many copperheads around my house, because there was plenty of space for them elsewhere and we nurtured the company of large black ratsnakes, who eat copperhead hatchlings, and black kingsnakes, who eat copperheads. With all the clearing around here (why do people buy wooded lots, then cut down all the trees???), the copperheads are being driven this way, and the old kingsnake that used to hang out around the garden hasn't been seen in a while. I hadn't seen a live copperhead in quite some time. I wasn't enjoying it now. Especially one eyeing me and my stick that look of "jab me with that thing again, you idiot, and I'm going to show you exactly how long I am!"

Sorry, herpatologists out there, but to me, copperheads are the same category as black widow spiders. They are beautiful. And the must DIE.

But as mom as I stared at this little snake, an he glared back at us, we were at a loss. I've never killed a snake. Its not like a little spider that you toss a shoe at. If I get it wrong, I could be in big trouble. We found a little grasscutter blade tool thingy, but the handle was only four feet long. And it was looking right at me. With that look. You could almost hear it say, "Go ahead, idiot. Make. My. Day."

And mom was reinforcing the fact that it really, really needed to join the Choir Invisible. Maybe even pine for fjords. She was right. As I said before. DIE. DIE. DIE.

And there it was. To get a good swing in, I'd probably have to chop off part of the pool, and it's position under a bench attached to the garden wall meant I would be at a very odd angle.

"Mom," I said, "we can't do this."

In other words... bokbokbokbokbok! I'm a chicken. No, wait, we're both chickens.

Yes, the snake was allowed to live. And the boys were not allowed to play in the pool. And we have our handy blade tool thingy close to hand, waiting for Round Two: Death of the Snake.

Thing that make you go "Hmmm...."

Well, there's nothing quite like thinking everything is moving along and then realizing you let your guard down and just got sucker-punched. Yes, indeed. That email that comes with that every popular line, "We scheduled your meeting on [date you could have told them weeks ago you wouldn't be in town for if anyone had bothered to call you]. I assume you got a letter..."

Well, no, actually. I haven't gotten a letter, I had no idea the date was scheduled, and that is exactly two weeks from today, when did you think you were going to schedule those four evals you wanted to do before that meeting?

Yes, I've already been embarrassed by being lectured about special education by the doc, when I'm the chair of the frickin' parent special ed committee and had the child screened not once, but twice. Can't I see this child needs an IEP? Well, no. What do i know about "normal"? He just looks like Andy to me. And he can do things like hold a conversation and dress himself. It isn't obvious to me. I had no idea how much support he might need for school, thanks.

But now that it is clear these behaviors translate to needing support, I want that support in place. Like, yesterday. Especially since I'm already Not Happy about being the Third Time. This better be the charm, people.

I'm starting to wonder what these people are thinking. Remember me? I'm the one who shows up with the binder of my kids' paperwork in temporal order? The one with the powerpoints? The one chairing your frickin' committee? Did you really think I wouldn't notice that you haven't invited me to the eligibility meeting, that you haven't even done the evals for it?

Beware the claws. Momma Bear is getting out the war paint.

Monday, August 10, 2009

Different Skills, Different Paths

Last week I took Joey to watch our auto mechanic, Mr. Jeff, working on cars. Joey loves cars and trucks, and the trip was a success. It may not have looked like Joey was fascinated to most people, as he meandered around the lot peering into windows and talking about various things that wouldn't seem related to cars, I could tell he was happy. There were trucks. There were engines. There were tractors. Life was great. Maybe Joey will grow up to be an auto mechanic!

I know we have family and friends who would not approve. Too many people in this society think that a briefcase and corporate tie are marks of success. The decline in manufacturing and industry in this country has meant the worst financial straits in nearly a century. The excuse for getting rid of factory jobs is that people should go into information technology and other computer and service-sector employment, as if there was something dirty and bad about factory jobs. Let's face it. Not everyone is a computer whiz. In fact, it takes intelligence and good sense to be a good manufacturer, a good auto mechanic, a good construction worker.

I have two boys who need to be able to take their own paths, and we are working hard to prepare them for any path they may decide to take. It is likely that Andy will want something physical to do- park ranger? veterinarian? maybe a farmer? or construction? Joey may need something that doesn't require a lot of speaking. He loves cars and trucks- an auto mechanic seems like a great path to take, if he decides he's really interested.

There's more than one way to make a living. Thank goodness. It would be a boring world if everybody was a computer tech or a doctor. Also a hungry one with nothing to live in, sore feet from walking to work, and nothing to wear. Not that we don't need working computers an good health, but there are so many different paths to take. That's one reason we're all made so differently- so we all have our dreams to follow and things we can and want to do.