This week Brian and I had to participate in an evaluation to get an updated diagnosis (because you know, he may have magically outgrown his autism). There are a lot of loopholes you have to jump through to make sure your child receives the services they need to reach their full potential. Services can get cut if you haven’t had the barrage of tests done at certain intervals.
Such evaluations bug me. Generally I can see the growth between the evaluations which is very encouraging and exciting for me. However, we often see a new practitioner (whichever one has the shortest wait list and will accept our insurance), who thinks they can figure out my child just by meeting him for a couple of hours.
They watch your child pace in circles, speaking in repetitive jargon (to your ears you know exactly what scripts he is repeating, but to others unfamiliar with him, they think it’s just nonsense), flapping his hands, and not initiating any contact with the practitioner.
Then that practitioner thinks they know your child and they know his abilities and his limitations.
So then she sits across from you and begins the questions, checking off boxes before you answer and when you say loudly and proudly, “Yes, he can do that.”, she looks up in shock, “Really?” and then goes on to describe what she is asking as if that will change your answer (don’t forget practitioner that I work in the field and I know exactly what you are looking for when you ask me if he has a mature grasp).
She then will ask, “He has MR, right?”.
You’ll actually freeze. That part of your brain that goes into fight or flight kicks on. You’re like a deer caught in the headlights.
She’ll reiterate, “Right? His IQ is below 70. I saw that in a past evaluation, right?”
You’ll finally start to react, “According to that test, yes. But I’m not sure that IQ tests are a true test of my child’s ability who doesn’t learn or communicate the same way the rest of the world does. How can those tests assess him when they are made to assess ‘typical’ children?”
She will then say, “Yes, and a test is just a snapshot of any child on that one particular day.”
You won’t let it go, “I can’t value a test that tells me my child can’t do things, when I know for a fact that he does those things at home or in his classroom. He won’t perform for a stranger or in a strange setting, that’s who he is. Last week he taught me what a xiphias is (it’s the greek word for sword- the genus that swordfish belongs to- in case you are wondering). I have to believe he has way more potential than any of your tests give him credit for.”
For the record people, my son CAN:
*button even the smallest dress shirt buttons
*ride a bicycle
*follow two-step directions
*say over 100 words
*knows written language works from left to right
*notice when I’m sad and offers a hug
*put glasses into the sink without breaking them
*do simple chores with one verbal cue to do so
*understands first, then language
*understands what a phone is
*get on the computer and find his favorite websites independently
All of these are skills that are obviously below his “real” age of 9 years 9 months and quite honestly it’s a slap in the face when you look at me in disbelief when I say he can do those things. There were a ton of questions on the Vineland that he can’t do, so let us savor the ones he can.
To have a child with special needs, you have to develop a thick skin. People are forever assessing your child. Heck, your whole family gets assessed. You are always under the microscope, being analyzed. In their defense they are doing it to help you and your child receive the services that are needed. We’ve been in this world for 10 years now and you would think I’d be accustomed to it. But it never gets easier and no matter how thick my skin grows, I always feel the need to “protect” my child against the people who are really trying to help him.
It’s the mama bear instinct I suppose. Only human.