Potential Quota

Son#2 had some testing done right before Thanksgiving. This was for non-verbal IQ testing and to confirm other diagnosis and labels. It's been many years since he was previously tested and his psychologist felt this was a good thing to have done for wherever Carson goes next. Or to help add to his admission packet when and if he applies to get into another place.
I loved his doctor and her patience with him when we went in on testing day. She was able to read the situation and read him pretty well for a Carson Noob.
I couldn't have asked for a better Carson the day we went in, he cooperated as well as Carson does, and his patience had him sitting for about an hour with her. Well done especially with his wariness of strangers now.
Of course I had my fair share of testing questions to fill out---packets with an S. Always my most, not favorite thing to do with my time. (If I was a rich person, this is one of the things I would spend my money on--someone to fill out forms for me.)
I went in this Tuesday for the results by myself and I wanted to share them with you because I think it's important.

The testing shows Carson has definite OCD issues. He demonstrated those at the time of testing with the doctor and I had told her about other OCD behaviors. I have always referred to these phases he gets in as his Manic Moments. Oh boy do they deserve the capital letters.
 "We're having a Manic Moment.", I would tell his sitters at the hospital.
Come in and expect to be handed every item on the desk to hold. Or watch him stack and re-stack his DVDs for an hour. Cute at first, not so much after a whole day of holding random crap he will throw at you.
And not so cute in the past when the Manic Moments decided I needed to stand in one place for 30 minutes and not move. Not even an inch. Nose to nose with him. You don't get to move your phone out of your pocket or use it. Don't. Move. One time son#2 picked me up and put me back in the spot he had me when I dared to scoot over an inch to shift my weight. I stayed put that time.
One of his favorites during a Manic Moment is to un-cross my legs. Even if he's reaching up from the backseat of the car to slap my leg off the other. There was definitely a time when Manic Moments ruled his life and mine. Thankfully they are fewer and farther between now.

Of course he still retains his label of Autistic Spectrum Disorder with Accompanying Intellectual & Language Impairment.
But his IQ tested lower than it had before. While I do not know that exact number from before, I know this is lower. Much. We are nowhere near the number 50 that wonderful, fairy tale places like the Dallas Autism Treatment Center like to see and work with.
Is there a word on the scale of happiness that falls below disappointed?
While I wasn't as disappointed as I have been in the past year with Carson things, this was a little surprising for me, but it's done. If this keeps Carson from being somewhere wonderful, I have no control over it do I? Absolutely none. This was the best Carson I'd seen in years as far as clarity with meds and overall health. I have nothing to complain about but I wish the tests were able to capture a more well-rounded view of all of The Carson.

I could tell by the psychologist's face she was scared to tell me. To disappoint a hopeful parent.
I'm smiling as I type this because I cannot count how many times there have been situations like this and more severe, about delivering bad news about Carson to me, and I am the one who ends up consoling the person delivering the disappointing news.
I took it all in and then it hit me. Carson and I are in no different boat than we were the day before. It's a number. And as the psychologist said--this is based on one hour of one day in November of Carson's life. I liked that. I told her I felt it was like age or weight--does anyone want to be judged on just the number of your IQ? Umm no thank you.

It hit me like a ton of bricks and I scooted forward in my chair and I said to her, "What is Carson's Potential Quota?"
She just looked at me blankly like she was searching her mind for this term.
 I made it up. I asked her again.
"This is his intelligence quotient, what measures what Carson has the capacity to do in his lifetime or future? What is his potential range, his score for what he COULD do? Where's that number?"

 I realized we all have a Potential Quota. A quota is a ration or portion right? So don't we all have a part of us that is still not doing everything we're capable of doing just yet? Doesn't that matter or count?
When you go for a job, your resume shows what you've been capable of doing in the past. The present you, sits in a chair across from them and tells them in person what you think you have the ability to do for them at this moment in time. They have to see potential to see you can be trained to do things their way or trained to do something you've never tried your hand at before. They have to see your past or present to see what your potential going forward for them is.
He can't sit in a chair and answer questions to measure this, so---
WHAT IS CARSON'S POTENTIAL QUOTA?

The doctor tells me there is no test for this as if I was serious. I smiled the dimple smile and said, yet.
There is no test yet.
I think there needs to be a test for kids and adults who function in this in-between world of neurological challenges of autism, Alzheimer's and the like.  Their skill sets are all over the map like missing rungs from a ladder--but it's still a bloody ladder! Because it's too hard to quantify potential to us simple neurologically minded folk, these people are often written off as incapable.  It is easier for us all to just brand them with diagnoses, labels & numbers that deems them incapable of so many things, then it is to help them find what exactly they CAN do.

For me, I believe my son has the potential (or future intelligence if you will) to learn to communicate WITH a communication system of some sort and he has the potential to potty train. He's done so in various forms in the past. Because he is not doing those things now, does not negate the fact that he has the potential to DO them and no number on any test, will convince me otherwise. If he can outwit your slow butt to get a cookie or steal your Dr. Pepper you think you hid from him, he can manage the rest.

I have said this so many times but it's true, so it's bears repeating--Just because my child (children) have things that keep their IQ's from being average (in both directions of that scale) does NOT mean they aren't entitled to live happy lives with PURPOSE & CHOICES that give their lives meaning.

I just wish there was a way to test and quantify the potential of things Carson could do for job skills or for his future. How do you sell your child to admissions at a long-term treatment facility, if you can't help them see your child is capable of learning and growing???
(And don't you dare judge the word sell, because most every parent is trying to SELL universities/colleges & job programs on our neurologically perfect children and their potential aren't we?)

I would love to see our states & country invest in the potential these kids have. Listen to those who work with them, and know them. Look past the numbers on these tests and take into consideration, these tests aren't taking into account all Carson's tricks or if he's not doing something not because he can't, but because he won't today. These tests don't allow for him being out of school and therapies for 3 years and the regression that comes with that.
None of this matters though, or changes anything because the IQ score is what it is.

BUT, my job hasn't changed and is still the same as any other parent's job. Just like my other children, my job with Carson is to get him ready to leave the nest. Our whole journey as parents is readying those baby chicks to leave your nest to go make their own nest. I have an 18 year old, and it isn't easy. My friends and I talk about this a lot. Most parents are fighting to get the best potential out of their child to go to college one day. It doesn't matter if it's college or not, he's still a stubborn 16 yr old who doesn't want a haircut & wants to do everything his way. And it doesn't matter if he's autistic, I'm trying to get him motivated to use his potential just like you are for your kids. That's our job as parents--find that potential & help them use it.
So we keep fighting when they quit college. We keep fighting when they don't want to work nights or weekends but need a JOB. We keep fighting even though they think we know nothing. And we keep fighting for them to use their potential when they don't know what they wanna do with their life.
Twice this week I've been thanked by people working in Carson's world, strangers meeting me for the first or second time.
They thanked me for staying involved. For being a good parent. For fighting.
I honestly never know how to respond to that--you're welcome sounds wrong.
All I do know is, Carson is not your average kid in this situation, and I'm not the average parent in this situation. This is the only way I know how to parent----fight for them. He and I are just bopping along to our own little drummer, in our own little band. Trying to find our happiness potential like we all are
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