Wednesday, December 15, 2010

How Do They Make Ten Pages About My Kid So Stressful?

Things have been going really well for my family lately. (Knock on wood. Do it! Do it NOW!) Jack, my son with autism, has been on an even keel for the most part, his school situation is good, and we've all been feeling pretty happy.

Naturally, the universe has ways to slap you down even when you're feeling positive about things. My slap-down came in the form of the report that finally arrived from Jack's recent neuro-psych evaluation. I have some suggestions for the people who wrote this particular report.

• Maybe print the report on fun paper with hearts and rainbows in the background. That whole stark black and white words on the page is kind of a drag.

• Can we come up with a different word for "impaired"? Or at least not use it as much? Like, maybe change a few instances of "impaired in XYZ skills" to "tries super hard at least part of the time in XYZ skills, but isn't quite there yet."

• Enough with the  CELF-4 and MOTR/L and VMI SS and WRAML-2. I don't know what those mean. It doesn't even help all that much when you write the full name out next to it. Let's give them fun names like "How Much He Talks" and "How Much He Understands" and "He's Not Just Ignoring You, There Is Actually an Issue With His Brain."

• I don't know what "morpheme" means. Please use a word I know. And that word shouldn't be encephalopathy.

• Add a section on Lego proficiency. We would score through the roof on that one.

• Tell me not just that "his speech is largely echolalic" and that "no spontaneous conversation was initiated," but that I should remember that when he is at home he is exploring coming up with his own words more and more. As a matter of fact, just remind me in general that the testing environment is not the same as anything else and that the behaviors you noted may not be typical of him in general.

• On any test in which my child scores in the 1st percentile, add a compliment, like "the shirt he was wearing was really cute," or "he didn't have any obvious smears of peanut butter on his face."

• Add more of my son's personality to the report. I enjoyed reading that "Jack occasionally stated, 'Delete!' to the examiner when she gave instructions he did not wish to follow," even though that's not what he was supposed to do. I also liked reading that Jack's response to a request to tell a time that he felt happy was, "7 o'clock."

I know Jack is a great kid. Most of the time I believe that he has a really bright future. Jeez, though, those reports can be hard to read—both literally and emotionally. The fact that it is full of useful information, observations, and recommendations doesn't make it much more awesome.

Maybe if they sent a cookie with it.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey. She believes rodents are funny, autism may be different than you think, and that if you have a choice between laughing and crying, you should always try to laugh—although sometimes you may have to do both.

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