I recently write a blog entry titled “I remember falling,” inspired by the music of Our Lady Peace. Their music makes me particularly reflective. And while I sat thinking about the mental reset that writing such a reflective piece gave me, I began thinking about the more recent revelations in my life.
I started thinking about the struggles I am currently going through with my child and how my ideas of parenting are constantly challenged by having a child with a disability.
I remember reading somewhere that the diagnosis is so hard for parents because you have to grieve for your child and who you thought they would be. This sounds horrible. Why would you grieve for a child who is a living and loving an part of your life right here and now?
But it’s true. I grieve every time I realize that things I thought he would be able to do are just not attainable. It seems selfish, I know. It’s not his fault, I should be able to accept him for who he is and be happy for all he can do and all the things that he is so very good at.
Reality isn’t that easy or perfect.
When my little boy was tested by a specialist and they said his intelligence was in the 98 percentile, my thoughts were, “Okay! That’s great news! He’s brilliant, just like I thought he was. Now to figure out how to help him so he can shine.” Simple right?
We got into therapies, got his medication adjusted, and he’s doing great. This year he was main streamed. He’s meeting many of his IEP goals ahead of schedule.
Then the meltdowns start again.
And his standardized test scores came in. He’s in the 19th percentile in one area, in the 30th in another. It hurts. I know he’s smart. Tests are hard. He’s not good at taking tests. It’s okay.
Then we have and IEP meeting. I’m told all the other kids are reading silently and its stigmatizing that my son still needs to read out loud. I didn’t realize he was that far behind his peers. He struggles with sounding out words. Writing is difficult for him. He needs prompting assistance to do even basic writing tasks. His comprehension is fine. But reading and writing independently is nearly impossible.
He is so frustrated by having to sound out words that each time, it’s a battle. He wants to guess and skip ahead. English doesn’t make sense. The way he sounds out words isn’t the way the letters are supposed to go on the page. He can tell when he spells a word wrong once he writes it down because he reads fairly well and has most words memorized by sight. Not by sound.
I’m beginning to realize that writing might be a real, genuine struggle for my son. That even with my love of reading and writing, that he is far behind his peers. That he hates writing because it is such a painful struggle for him.
And I grieve, because I thought because he’s so smart, he would make up for his disability on his own. I thought he’d be reading and writing with no problem, just like all his friends.
Instead, I have to have conversations about how even though he has autism, it’s not an excuse to not try. That he’s older than the other kids in his class because he’s not ready to be in third grade. He has to be in second grade and because of his autism he just has to work harder.
There is a little girl in his class that also has autism and he tells me she doesn’t get homework because it’s too hard for her. And I have tell him that that might be the case for her, but he still has to do homework. That he has to work harder. That he has to keep trying.
And I stop and wonder if I’m pushing him because I want him to be something he’s not. Or if I’m failing him some how by not pushing him hard enough. I don’t know. All I know is that it hurts to know that he should be reading more than he is. He should be able to write more than he does.
And If I stop pushing, am I failing him, or am I giving him the break he needs?
I don’t know. I just know that it’s hard. And it’s not fair.
I know I’ve accepted that my son is different. I never had aspirations of him being anything but whoever he wanted to be. When I grieve during these difficult times, I’m not grieving because I’m losing some idealized version of the future. I’m grieving because this isn’t fair. It isn’t fair that learning isn’t easy for him. It’s not fair that he’s got this remarkable, brilliant mind, and yet language and communication are so very difficult for him.
It’s so very essential for him to learn to write and eventually type. I know software will help him to spell, and there are dictation programs. But he will be judged if he doesn’t know basic spelling and grammar. He will be seen as unprofessional if he can’t tell one homonym from another.
I know, I know, I shouldn’t worry about such small things, but I do. I know how awful the world is. I know how cruel and judgmental people are and I’m scared for him. I’m afraid he’s not going to be seen for the brilliant, beautiful, creative person he is.
And as a parent, I grieve for him. And I push him. Because I know one day, I won’t be there for him, to fight for him, to make sure that he’s okay. And I’m terrified.
I’m terrified that I will fail him. That I’m failing him now. That he’ll fail because of me.