I was having a chat with my sister-in-law yesterday via Slack, as one does, and the topic turned to kids. Specifically, with special needs. Of which mine is of course one.
We were talking about all that is involved with getting kids a diagnosis, of helping them learn, of teaching them to advocate for themselves. We talked about IEPs and lesson adaptations and development.
There’s a lot involved with getting a child the education they need.
But we got to a point in the conversation where, I had to confess, there is also a lot involved with getting a parent the education they need as well.
The thought had not occurred to me, really, so fully formed and so clear before, but special education is also for the parents.
And most parents, I think, don’t get that right off, when they’re thrown kicking and screaming into the special education pool, but it really is sometimes as much about your education as it is about your child’s.
As a child, school is school. Kids go, they socialize, they try to learn, they have fun, they struggle, they eat lunch, and they go home. Because of the work of spec ed professionals in the educational system, once a kid gets rolling in special ed, it’s just school. Teachers, educational assistants, principals, support staff — they work to make it as seamless as possible for kids in their care.
It’s just school, for the kids. Some of them hate it and some work on computers and some would rather be sitting with their best friends. Some love math and some draw pictures and some love to gym class. Some love going every day and some enjoy recess and some think that Bobby is kinda cute.
It’s just, you know, SCHOOL. ::insert standard eye-rolling “mom you are so boring” kid face here::
For parents, though, it takes us a lot of time to get to that point.
Parents place all sorts of dreams in that tiny squalling new life that arrives in their family. They have hopes and ideas and plans. They have expectations and live vicariously and work hard to make it better than it was for them.
Having a kid in special ed will change all of that.
It’s really hard when you are first told your child has special needs. Whatever the age, suddenly all those plans and dreams and ideas and preconceived notions are taken and thrown up in the air, like a bucket of marbles. And as a parent, you scramble like hell to keep track of them as they are coming back down.
Some you can gather up pretty easily. A couple might get a little scratched up but they’re still fine. Some bounce away but if you chase after them, you might be a little winded but you can grab them if you run.
And some roll away under the furniture, never to be seen again.
As a parent, that game of marbles you’ve played all your life feels like a completely different game. The marbles you have now might look different, or not roll as true as you’d like them to. You might need to learn to play with different marbles than you thought you’d be playing with. You might struggle to keep track of them sometimes. Your game of marbles has some different rules now. And the rules might change, just when you start thinking you’re getting good at it.
There are a lot of feelings that come with that, too. Denial. Anger. Resentment. Despair.
But here’s the thing.
Over there? Your kid is playing marbles like it’s the best game ever. They are rolling with whatever the new rules are. They’re taking that marble with the ding in it and making it roll for the best score they can. They’re rocking it.
So as a parent, you have to come to a point where you realize that it’s okay, this new game.
You have to realize — REALLY UNDERSTAND — that this is who they are.
And you have to be okay with it.
It doesn’t come easily. As a parent, you have expectations of what “normal” is. Your tendency to expect things of your child, to “should” on them based on their age or what their peers can do, will jump up and smack you in the face at every turn. That’s how we were taught to parent from the minute we met them. We were told what to expect when we were expecting, told what to expect from every age after they were born, told what to expect from every report card we received from school for the first few years.
But like that game of marbles, at some point, you have to forget all that. There are no other children in this game. You have to play the game with your child, right here and now. And nobody else.
You have to come to the realization that this, right here, right now, is who they are. And then you get on with it.
Because your kid is.
This is just who they are, and they’re getting on with it.
So I was chatting with my sister-in-law and I told her that it was a real struggle, realizing about That Girl that “that’s just who she is”. We’re fortunate that she is in her second of two good schools with good programs for her, and she loves it. But for us, day to day, we have to remind ourselves often to reset our expectations and remember that This Is Who She Is.
I got a really good reminder of this a few weeks ago. I had to pull her from one of her sports programs because the coaching was just not going to work for her. I mean, my kid’s a pretty good natural athlete, and can learn sports really well. And we had taken the same course to try it out for a few weeks last spring, and she had absolutely loved it. Just LOVED every minute of it.
But the program this fall was not being run as a fun, basic-level developmental program as advertised, and even a kid without challenges would have struggled to understand what to do and what was expected of them.
A few years ago, before we fully grasped what her issues and needs were, I would have taken the extra time to coach That Girl on the side. I would have volunteered to assist during the sessions. I would have guided her along through everything. I would have jollied her along. Because I would have wanted my kid to “keep up”. I would have hoped that she could do that.
But we’re beyond that now. We know that This Is Who She Is.
There’s no point in expecting her to do something beyond her capabilities. She will not enjoy it, she won’t learn from it, she might end up feeling bad about herself and like she has somehow failed, and it will end up being money and time wasted.
What’s the fucking point in that?
We asked her as soon as she finished that first session the most important question of all: did you have any fun? She had looked so forward to this program for months, that as soon as she said, “Mom, I didn’t have any fun at all after that first game”, I knew it was over.
I came home, and contacted the program right away, and gave them some feedback, that this was not the program they had promised or we had hoped for, and that we’d like to withdraw and have our money back. I was angry on That Girl’s behalf, I was disappointed on her behalf, and I was pretty sad that she had to miss out on something she loved.
There were other kids who were there who were equally confused, just as new to the game, still learning the basics. They will probably be fine.
But she can’t be in a sports program that has assumptions of prior knowledge of rules, that doesn’t explain everything slowly and clearly. She can’t handle chaos and shouting and the attitude that she’ll just pick it up as she goes along.
That is Not Who She Is.
And every day, as we face challenges and live our lives, we have to stop and remind ourselves: That’s just who she is.
When we reach our limits of repeating the same things over and over again, we have to stop and remind ourselves that she’s not trying to be frustrating – that’s just who she is. When we are frustrated because she can’t seem to remember to do X task or bring Y home, we have to remind ourselves that she’s not being lazy – that’s just who she is.
And it’s perfectly okay.
And when she laments that tying her shoes is really hard, or that she wishes she could ride a bike, or that she can’t figure out how to sew or do subtraction, we have to stop and remind her, too, that that is just who she is.
It’s perfectly okay. In fact, it’s wonderful, because it is all part of who she is, and who she is just hasn’t gotten there YET. But she will. And won’t it be great when she does?
Because it’s all a part of who she is, and we believe in her and we love who she is, and we don’t want her to be anyone else.