5 reasons that special needs parents are not all that special

June 9, 2010

I noticed when surfing around the other day that it’s popular to make lists of the reasons that special needs parents are special. So okay, we know more about the obscure nuances of education and healthcare law, we are allowed to turn up our noses up at doctor’s sage pronouncements, and we are all, automatically, Supermoms and Superdads (just a weird little note–spell check approves supermom but not superdad!). But I thought that, for the sake of a balanced discussion, I would contribute a list of why special needs parents are just as fallible, bumbling and imperfect as other parents.

1. We say things in front of our kids that we shouldn’t. See, when your six year old doesn’t talk, it’s really hard to remember that she’s listening and storing away everything you say. So if my daughter ever does improve her verbal skills, I hope her teachers assume she learned the f-bomb from her classmates. But really, that’s the least of my worries. How many conversations have her father and I had in front of her, about her disability, future, medical issues, etc, that scared and confused her, especially since she can’t ask questions? I’m not sure. A couple years ago, we started paying more attention to things like that, but it was probably not soon enough.

2. We underestimate our kids. I find myself speaking louder than normal to Chloe, even though I know she understands me. The other day, I was surprised to learn that she doesn’t “accidentally” kick her kindergarten friends the way she does me. I seriously thought she couldn’t help it. And don’t get me started on the parents who say “he’s eight but he’s like a two year old.” I don’t care what benighted doctor told them that. No eight year old is like a two year old, unless that’s how you treat them.

3. We overestimate our kids. I once met a mom whose non-verbal three year old used her cell phone to spell out messages while she held his hand. To demonstrate, he spelled out “I am a fantastic typer.” Yeah, right. Ever heard of facilitated communication? Someone is a fantastic typer, but it’s probably not the three year old.

4. We put our kids into institutions. But “we” I don’t mean me, of course. Arkansas is currently being sued by the Justice Department for the pathetic state of it’s “human development centers.” One of them is being shut down, but instead of taking this opportunity to get people out of those places and into the community, the money that’s saved will probably go to beef up the five other institutions. And who’s a big part of the lobby for these places? Parents of the people inside them. Now, I don’t blame the parents. Most of them put their kids there years ago, when there were few resources available and lots of doctors telling them it was the right thing to do. But it wasn’t. Like I said, special needs parents make mistakes, too. And they have opportunities to make really big ones.

5. Dr. Andrew Wakefield and Jenny McCarthy. The healthcare system in the United States could be improved, by a lot. And among the many problems with our healthcare system is the lack of information and effective treatments for many developmental disabilities, such as autism. Another problem we have is reliance on big pharmaceutical companies who put profits before patients and do things like include toxic chemicals in their recipes for vaccines. But it’s really hard to have a thoughtful discussion about these things when there are so many people spewing nonsense. Their irresponsible rhetoric (welcome back, measles and whooping cough) and their bad science are just distracting from the real issues and letting the medical industry off the hook. And these charlatans are supported by armies of…special needs parents. They are understandably desperate to help their children, and I’m sure that joining a dubious cause feels like helping. But it’s not.

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