Labels are for Soup Cans

One of the biggest fears you hear when someone says “brain damage” is a lack of intellect. I mean, it didn’t even really occur to me all the physical issues that are involved with brain damage–that came later.

I mean, the idea that my child might be “retarded” was pretty shocking to me. I’ll be frank and say that I was expecting to deal with issues such as AP versus IB and whether or not schools had good gifted programs.

But I had an advantage that many people don’t–I’d worked as a special ed teacher for five years.

I’d taught kids that were “mentally retarded” and I’d learned a lot about that diagnosis and what it really meant. The definition of “mentally retarded” or “mildly retarded” is a person with an IQ lower than 70. Average is 100. Most of the kids I worked with were high functioning so their IQ’s fell between 60 and 70.

Never has a number meant less. I saw kids with an IQ of 70 master complex geometry. I saw kids with higher than that fail miserably. I had one girl come into my class “retarded” and leave “learning disabled.” I saw a girl get the label “retarded” because they couldn’t figure out what the heck was wrong with her–I think boy crazy and disinterested might have been a better classification.

So after I found out Charlie had brain damage, I hit the pavement, er, Internet and did as much research as I could. My idea of research is to gather as many cases as I can and draw my own conclusions–I don’t like being told what to think. What I saw was this–a kid could be very physically compromised by their brain damage and still mentally capable. I found that kids who were missing two senses–primarily vision and hearing–were at a great risk for mental handicaps. Ditto for kids with an uncontrolled seizure disorder. Other than that, though, there was simply no telling whether a kid would be fine or not. Looked like a crap shoot. I also found a LOT of fault with the IQ system which I was already not crazy about. I mean, how do you test IQ on someone who can’t hold a pencil? Has trouble focusing their eyes? Can’t speak? Can’t hold up their head?

So I made a conclusion. I decided that many disabled kids probably got low IQ scores for a plethora of obvious reasons–they didn’t get out as much, they were often sick, they couldn’t actually get to all the things typical kids could, they couldn’t see as well, they couldn’t manipulate their world as well. I mean really, with all these challenges is it any wonder that they might not know as much as their peers?

So how do you get the info in with all these challenges?

With Charlie, I’m always quizzing people with typical children and observing them. What are they doing right now? If they’re digging in the kitchen cabinets then so are we–I just have to do the digging while Charlie watches. Same for the fridge, the drawers in his dresser, and the mail box. My friend’s kid is constantly asking “what’s that?” Well, Charlie can’t talk yet but I just walk around identifying everything we run into. This is the car. This is your seat. I’m getting gas. Gas makes the car go. Blah, blah, blah. He freakin’ loved the deli counter.

I could continue this post for another five paragraphs but I’ll leave it at this for tonight–go enjoy the long weekend and I promise to come back next week and talk about brain theory, reading, and why it’s always a good time to start helping your child read.

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  1. Very nice, Katy! I have been enjoying your philisophical posts, lately. I can really relate. I have been learning alot about all this testing for intelligence w/ Faith being tested and all. I have come to the conclusion that they are really just measurements for either schools, government agencies (ie:early intervention, service coordination), and medical professionals who want to label our children. I think what if they had never been invented, things would still be what they are. After Faith was tested it didn't change anything, she is still who she is. Keep up these posts, I am really enjoying them! Thanks!

  2. Wherever HE Leads We'll Go says:

    Very well said. I am constantly chattering away to my daughter. Sometimes I wonder if she wishes I would just be quiet! I just think, like you said, that if she could talk she would be asking lots of questions. So why not give her the info she isn't able to ask for?

  3. the sky is definitely the limit–I tried and tried to tell those goofy preschool teachers that Clayton was bright, just trapped in his body!! but alas, they didn't want to seem to take the time to dig deep and help him overcome those boundaries . . .

  4. Wonderful post. I couldn't agree more. As a school counselor, I've worked with a lot of kids who have been labeled as "mildly mentally retarded" and I was SHOCKED by the label… as they were so bright and capable. 2/3 kids that I'm thinking of went off to college. The sky really IS the limit, especially when a child has asupportive & optimistic parent(s) — which you obviously are. =)

  5. Wonderful post. I couldn't agree more. As a school counselor, I've worked with a lot of kids who have been labeled as "mildly mentally retarded" and I was SHOCKED by the label… as they were so bright and capable. 2/3 kids that I'm thinking of went off to college. The sky really IS the limit, especially when a child has asupportive & optimistic parent(s) — which you obviously are. =)

  6. This is one (of the many) reasons why I'm so grateful that Ben's twin is a typically developing child. I see everyday what typical kids Ben's age are doing.

    You're doing a great job with Charlie and that's awesome that you pull stuff out of the cupboards for him. Ben doesn't need me to do that…his brother does it for hime (and the yells "BEN" at the top of his lungs so Ben can come and check it out).

    Great post.

  7. Isn't that the whole thing that trips us all up? By us I mean us parents that have children living with some special circumstance. The odds of them being tested and evaluated based on methods that are grossly over-standardized is super duper high.

    But yeah, doing your own observational analysis is often the best tool.

    I'll never forget Bennett's first (of what will probably be many) neuro-psych tests. Here's a kid, seizing like a banshee every day, who can't say words, can't identify objects by pointing or anything like that…things that most 'normal' 21 month olds can do.

    The guy puts 3-4 objects in front of Bennett and looks in his book and reads 'Bennett…give me the book'. Bennett doesn't respond. Tester scribbles notes. 'Bennett…pick up the cup'. Bennett doesn't respond. Tester scribbles notes.

    OK…. :)

  8. i have really loved your last two posts. you are getting linked to like crazy, i have seen other blogs quoting you left and right! i think helping charlie do things other kids his age are doing is awesome. like cary, i appreciate having typically developing twin to watch and learn from. right now, lucy is all about helping. helping unload the dishwasher, throwing clothes in the washing machine, etc. i have been trying to make it easier for drake to help too, if i have something to throw away, i hand it to him and get him over the to the trash to drop it in. he loves it.

  9. Your comments are wonderful. I love your perspective.

  10. Great post, Katy. You are fortunate enough to be on both sides of the coin as an educator and Charlie's mom. I've always believed that every kid you come into contact with is just that…another kid. No two are alike…even with the same label. Each with his own gifts/struggles/issues…even the ones who have no label. Like I tell Jacob, everybody's got something!

    Sometimes I wonder if we did right by Jacob having him tested and subsequently labeled with Asperger's. I think for a time it was a means to an end–like Candace said, for the school system for "services". Now, I don't know. Truth is, he's just Jacob. Label or no. And he's AWESOME.

    Keep talking to Charlie. One day he's going to talk back!

  11. Loved your blog. You have given me much food for thought.
    thank you.