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42

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September 12, 2011 by Marj Hatzell

Recently we had Bugaboo undergo some developmental testing. You know, to find out if he is still autistic and stuff. I KEED! I KEED!  That’s a little autism humor. C’mon, laugh. It’s the best medicine, or so I’ve been told.

Anyways, part of the reason we approved the testing (at school) was to find out if his IQ score qualified or placed him in the “MR” or “cognitive delay” range. This is important for a few reasons:

A) If he has MR or qualified, we receive additional services. Or at least get on a gigantic, mile long waiting list for them.

2) He may also receive additional therapies

D) He may also receive additional MONETARY SUPPORT

See why this testing was necessary?

Now, a disclaimer: Do I believe Bugaboo has Mental Retardation? No. Not really. It’s…well, it’s complicated. While he CLEARLY has a host of issues and some significant delays in all areas (communication and social/emotional are the biggies) I do not believe he is retarded, so to speak. Do I believe he is delayed? YOU BETCHA. Seriously delayed. Cognitive delays? Yes. His lack of communication and his behavioral disorder makes it so. Then why the bloody heck would I approve this testing? See above. Services. Support. Additional stuff. Stuff that isn’t available to us otherwise (like Special Olympics. True story). And, since he certainly has some TBI (traumatic brain injury) from the seizures he suffered from age 2ish to 6ish, he still falls in that category.

In a way, I was trying to improve his chances of getting more of what he needs. I approved the testing because I felt “it was time.” Time to face reality and move forward. Time to accept that he wasn’t going to magically talk, be on grade level and VOILA! Not need special services or a special school or any additional help.  I mean, I’m fairly realistic, yo. I’ve been emotionally prepared for him to need care for his entire life. I am prepared that some day he may live in a group or independent living situation. I am prepared that we have to have guardians named in the event of our death and have a special needs trust so he doesn’t become a ward of the state. I’m prepared to accept that our life is vastly different from my “normal” friends (what ever that means).

But was I prepared to see that magical number? Sigh. No. In a way I was excited the testing was complete and true to form I was ready to just move forward and dive in and get started. But the past few days all I can do is stare at that number. That awful number. The lower-than-low number. And wish it wasn’t so. And hope it wasn’t true. And dream of a day when Bugaboo could thumb his nose at all the haters and unhopefuls and people who limit him and not have high expectations for him and say, “HEY! I’M IN HERE!  AND I’M AWESOME!”

And the number was 42.(warning. Nerd alert coming)

As in, the answer to life, the universe and everything. And I had a good chuckle and texted my friends and my family and was all, “HAHAHAHA!!!  Bugaboo is 42!  Isn’t that AWESOME?” In reality, I’m dying inside. I hate it, that number. Do I think it accurately represents him? AW HELLZ NAW. Do I think he is cognitively delayed and has an intellectual disability? Yes. Yes, I do. It’s hard to swallow because dammit, I long to hear that child’s voice. I want to see him in the school band. I want to watch him run on the soccer field and score an awesome goal and hear the coach say, “watch out for that Bugaboo kid. He’s a good player.”

That might happen. Or might not happen. It doesn’t matter. What matters is Bugaboo will get what he needs and he will grow and thrive and be amazing and awesome, just like he is right now.

You didn’t know I was awesome? HELLOOOOO!!!!

He’s the Ultimate Answer to the Ultimate Question. Life doesn’t get much better than that, yo.

21 thoughts on “42

  1. Stimey says:

    He is the ultimate answer. 🙂 Every single time I read a report about my kid, I get knocked down by it. Every time. Seeing your kid on paper is nothing like seeing him in person. Hang in there.

  2. MemeGRL says:

    Don’t hate on the 42. That’s the universe’s way of telling you what you need to know. 43 or 41–you coulda hated on. But. The universe knew: you’d know what 42 meant. Among other things, it means he can get services. And services might help him get closer to a point where he can show you what he really thinks of that number. Because anyone who has met him knows means the same for him as it does to you. (Yep, I speak nerd.)
    That’s beautiful. Really.

  3. I like reading your stuff, Marj. Especially since I never really see you in person, my fault.

    But what is this 42? Some kind of score based on what, 100? I know how you feel, I just don’t know what it means…

    • 42. Like IQ 42. Like, WHOA THAT IS LOW 42. I think 70- is considered MR. 100-120 is average, above that is gifted? Bug Boy’s is waaaay above that. It’s just so odd having one kid in the top 2% of the bell curve and the other kid way at the other end, you know? But? It’s just a number. It’s not him.

  4. Julie says:

    Hi – just de-lurking to say that I’ve been there and I know what a gut-punch that number is to hear. But not only does that number not represent who your son is now, it also might change completely in a few years. IQ testing for young children is always a little iffy.

    Here’s hoping he gets all the services he needs to let his voice be heard!

  5. Janet says:

    LOVE the humor. I haven’t taken Luke back to the ped neuro because there isn’t much for him to say other than Luke does or doesn’t have autism. And even someone who plays a doctor on TV could answer that:-)

    Last winter Luke had his re-evals at school and his team and I decided not to do an IQ test. It won’t qualify him for more services from the school or state. And my concern is that it will give teachers that he will have in the future permission to blow him off. Though I might change my mind at some point.

    What’s this about him not qualifying for the special olympics!? Luke does, though I haven’t signed him up yet. I know several boys on the spectrum who partisipate. One kiddo is high functioning enough that a causal observer wouldn’t know that there are issues.

    Thanks for sharing.

  6. kal says:

    I hate the reports, hate them. I hate seeing my child reduced to a number and to a black-and-white number when he is so much more than that. Which is to say, I understand how you feel.

  7. texylady says:

    I know exactly what you mean about doing what you have to do to get services. I had to have my precious blue-eyed blond baby declared emotionally disturbed. Teacher fought it, but the child had been hospitalized for a month, so, yo, that is a clue. However, the extra help that she got enabled her to complete school. I am happy to report that now, at age 30, she holds down a responsible job, making more than I ever have. Ya does what ya gotta do. (((hugs)))

  8. rg the lg says:

    Bunk! IQ is bunk … measuring cognition? Gimme a break …
    Of course, I do celebrate that Bugaboo met the threshold … and 42 is far more than one might think. If you haven’t read the H2G2, then you need to. 42 is after all the answer … to life, the universe, everything … at least to the mind of deep thought.
    I am a teacher … used to be a library guy … but now I work with the ‘wash-outs’ in night school … credit recovery and all that sort of thing. Bummed out by school … by the banality of normality … whatever the hell that is.
    I have a class room across from the sort of place your kid will find services … Ms L—-z and her aide, Ms S—–z are great … Ms B–l is a true ding-dong … and Senor Q is awesome. Q is also the deaf interpreter for the schools … and guess what? The one non-speaking kid in the class caught on to American Sign Language … and she communicates! I mean, she talks … to and with Senor Q … . The ding-dong B–l says its stupid … that Q is just making it up. I also speak ‘hands’ and Q isn’t making anything up. Trouble is, the kid may never speak, but now that she knows how to communicate, some wise ass will retest her, and she’ll end up losing services … and the Ms B–l’s dream will come true when the girl fails in regularity school …
    May the irregulars triumph …
    I’m with you girl …

  9. […] Y’all remember 42, right? Yeah. That was Bugaboo’s eval. Bug Boy just finished his  and I sat down with the […]

  10. […] get the picture. He figures it out. Not bad for a kid who supposedly has an IQ of 42, […]

  11. solodialogue says:

    I’ve been struggling with the whole concept of intellectual disability lately and you drilled this post into my lap this morning. To have your strength and perspective and smarts would be pretty awesome. And of all the numbers 42? Now, I love Douglas Adams, but I always felt we just needed a more proper way to phrase the question. And that’s the thing with the testing, how accurate could it really be when real life shows you he can outspell, backward spell and now, I’m guessing, understand pig Latin. Thanks for this post. I consider it part of my answer too. xo

  12. […] it down, he figures something else out. Now tell me, how accurate is an IQ test if a child with an IQ of 42 can connive, sneak and figure this stuff […]

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