School has always been a challenge. She doesn't like school. She thinks it's boring. She doesn't connect the idea of needing an education in order to get a job and do the things she wants to do with her life (at least the ones that are consistent with reality). I suspect she has not done a normal day's school work since early in middle school. I know she hasn't at any point in 9th or 10th grade. Even when I had her work at home, it wasn't her supposed grade level.
Anyway, she is super excited about Halloween and full of grandiose ideas of costumes she'll sew (for her stuffed animal, Austin, from the Backyardigans) and treats she'll make to give away. It used to be my favorite holiday too - maybe up until 15 years ago. She asked me what happened to my Halloween spirit. I told her it was beaten out of me with a shovel - and then I had to explain that I didn't mean it literally, because she is all about literal.
There are so many memes on Facebook about choosing to be happy and choosing to see the positive. Right now I can't seem to get past feeling frustrated and helpless to improve my daughter's situation. I can't give up on school for her, especially when I know she's smart enough to excel, but how do you make someone want to learn? I ask this not from lack of trying. We've tried about every thing we can think of - rewards, consequences, changing the content to revolve around her interests - to no avail. The only one that seems to be able to make her do any academics is me, and I have to work. I can't be her full time teacher.
To be perfectly honest, I'm kind of glad I have to work. I was a work at home mom from just before her birth until the end of June last year (she was just over 14). That's a long time. I did IT support while dealing with her issues. When I go to work, I'm around nominal adults all day and I almost have a break from the other stuff. Of course there are always the calls and emails from school, but I can't be constantly summoned to come get her. "I have to work and I'm an hour away" is an awesome excuse.
I didn't choose to have a special needs child. It wasn't some deity's special plan for me. I'm not a saint. It is what it is. I wouldn't trade her for anything, and I wouldn't have another for a million dollars. I don't want people to say, "I'm sorry" when they hear she has autism. She's a great kid, except when she's not. She can be funny, clever, creative and loving. Also maddening, frustrating, stubborn, and impossible.
She's my little hatchling and I'm her dragon mama. And to all those proud parents of normal kids with those damn honor student bumper stickers - my hatchling ate your honor student.
I’m No Saint
Don’t call me a saint. If you do, you don’t know me.
Don’t call my child a saint
either. She’s a child, with all the
craziness that entails.
Don’t tell me that ‘God’
doesn’t give you more than you can handle.
We all know there’s plenty of
evidence of that to the contrary, out in the world.
I didn’t sign up for this.
I didn’t imagine this.
I don’t love my child because
of her disability or in spite of her disability.
I love her because she’s my
child.
You know why I am where I
am? Because that was the only option for
me.
Might for right.
Suffer no guilt.
What have you done today to
make the world a better place?
That’s the code I try to live
by. I’m human – so I don’t always
succeed.
Don’t call my child a saint
because she has special needs.
Seeing the disability as the
core of who she is - saying she’s
blessed or a saint –
That’s just as condescending
as people that say she’s less, or defective.
She is not the sum of her
disability.
She is her own person.
She has all the love, hate, madness,
beauty, intractableness of any other child.
And she happens to have a
disability or three.
And really, if you look at
it, who doesn’t have something different about them?
She may have her official
labels.
Just because you don’t have
one, doesn’t mean you’re that mythical person called ‘normal’.
Whoever that mystery person
is, I’ve never met them.
I do what I do to care for my
child – to help her grow.
I teach her manners, because
they ease the way while she learns compassion.
I teach her the rules now,
because they lay the rails for learning to do what’s right.
She’s the center of my
universe, but don’t tell her that.
Children are egocentric
enough as it is.
I learned to speak up, from a
lifetime of shyness, because I had to.
I learned to not care if what
I said would rock the boat, because I had to.
I learned a million things I
never wanted to know, because I had to.
I’m not a saint, and I didn’t
sign up for this.
But I wouldn’t change
anything either.
Noelle Meade
11/9/2012
