We had a parent teacher conference this week.
In EB’s first 9 weeks of Kindergarten he has mastered all of the IEP goals written in the Spring.
All of them.
He’s spending the majority of his time integrated with the general education Kindergarten class.
The word “mainstreaming” came up a time or two.
Not this year, maybe not even next, but…definitely that’s the trajectory.
Academically he is above grade level.
Emotionally and socially he is making progress.
Everything is going as well as can be expected.
There is plenty of work left to do, of course.
But, he is striving.
I should be thrilled, right?
Don’t get me wrong, I’m proud of him. I’m proud of our team and their hard work. I’m even feeling a tiny bit validated at being the crazy woman whose kid was in therapy six days a week since before he was two.
Early intervention works, right?
Of course it does.
It works for some kids, some times.
My feelings after that meeting:
- Believe it or not, it feels terrible for your child to be trending towards the positive when other children who have had the same opportunities and/or more are not making them same progress. I don’t dare argue that my “guilt” in anyway outweighs the sorrow of the parents who are continuing to fight for what we take for granted – but I do question “why us”? Because it’s absolutely unfair.
- I just had this whole cathartic reconciliation about what Autism meant for our family and now I am doubting myself. Again.
- I fear counting our blessings too soon because I don’t know EB’s needs will be in the future and I don’t want to set him/us up for failure.
- I wonder if, without supports, he can/will be successful.
- I don’t understand this disorder. I hate it for it’s ambiguity. I hate that it’s not “tangible”, that I can’t understand what it means for my son – not today – not next week – not ever.
- I really hate that I have to make decisions about this child’s life without data.
As a a parent I have more information about investing in a 401K plan than I do about investing in my child’s future. I know that regardless there is a risk to any choice, but the risk of losing a few thousand dollars is a lot less consequential than oh, I don’t know, jeopardizing the rest of my child’s life.
Who’s to say what is “evidence-based” and what that even means on an individualized basis?
We make our choices by gut. We pray they are right for our child. We ask that you don’t judge us for doing the wrong thing, too much of the right thing, or nothing at all.
We don’t have a prospectus, you see. So we are at the mercy of what is available, affordable, and popular.
There aren’t 5 year or 10 year projections.
To have that, it would mean that some of those who went before us failed.
That’s unacceptable.
Who is going to volunteer their child for a game of Russian Roulette?
That’s exactly what we are doing, though.
If the data is ever to exist, it’s going to at the expense of our calculated guesses.
That’s a big pill to swallow.
Do I believe in early intervention? I do. I believe that the hard work of a lot of talented people, and most importantly Peter, helped him develop the skills he needed to get to where he is today. After all, we don’t have to
look back so far
be reminded how tough it was.
I’m careful to say it’s the end all and be all, though.
If Autism was easy to understand, if there were one-sized-fits-all “treatments’, or even a moderate-risk prospectus…
Well, then you’d probably hear a lot less outrage from me about the disparity in outcomes.
It’s not that simple, though.
So we just hang out here in the gray area. Celebrating our successes and commiserating our failures. Hoping all of this will make a difference for a child in the future…
Maybe even our own.
His teacher asked him what he was thankful for.
