I’ve wanted to write this post for a while. But I’ve held back because it felt disloyal to my father, who passed away in December. But I recently read Ibby’s post and I decided it needed to be written. I wish I’d read what Ibby wrote years ago.
My father loved both of my children deeply. But he didn’t get it when it came to Evie.
I was told by a friend of his, days after he died, “Your father was devastated about Evelyn.”
And I know it is true. He was.
And that hurt me. Every single day.
He would call me, daily, at lunch and always ask, “Is Evelyn making any progress with speech?” Or potty training. Or whatever.
And it got to the point that my heart would sink when the phone rang at lunch time. And continued to sink months after he died because for a minute I would forget that it could not possibly be him calling.
It didn’t hurt because I was upset that Evelyn was not walking/talking/ whatever. It bothered me because it was like he didn’t even see Evelyn. He saw a deficit of skills where he should have seen a funny, happy, sweet child.
I would try to, gently, explain to him that Evie is happy and that should be the only thing he worried about. Because his question did stem from genuine love and concern for her well-being. But it never sunk in.
And when he visited there were moments where he saw Evelyn. He would be playing with her and laughing. And enjoying her. But those moments were fleeting.
Why is it that we seem to measure the value of a child by the skill she has acquired? It seems specific to disabled children–having one disabled child and one typically developing child. People don’t constantly ask me about skills Maxine has gained. But Evie. Most people aren’t content to hear about something funny she did. Or that she loves swimming. Or that she is the most affectionate kid in the world.
They want to hear about milestones. Which ones she met. Which ones she is close to meeting. How long it will take to meet them. They want to ask me if I saw this or that on 60 minutes. Or if I read this article on development. Or about a milestone some other Autistic kid just met. Have I tried XYZ?
I can’t believe I need to write this. But Evie is a person. She is not a deficit. She does not have deficits. We aren’t obsessed with the skills she has or has not acquired. You shouldn’t be either.
See her. See my daughter. She is happy. See Evie.
Once again, nicely written.
I love this!!
I can’t wait to meet her! Eeeeeeeeee yah! Flap!
Love it. Beautifully and tastefully said.
I grew up disabled and had a daughter with a disability (she’s now an adult). For me the hardest part was when I internalized those milestones. Why isn’t she sitting yet? What does it mean for her future? As if her physical development at age 3 would determine the rest of her life. I would forget that she was fabulous and smart and silly and focused when we were around families with children who followed more typical developmental milestones. But then we started kindergarten with 16 kids. Two parents had cancer, two children had cancer (one active and one in remission) and none of my worries mattered anymore. That class bonded because we all had to. The milestones became who lived and who didn’t which kept life pretty simple. It still hurts when family members comment on how much we each deviate from standards – my disability worsens with age – but when I get lost, I remember that kindergarten class and life seems alot simpler.