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