When did you realize your kid was defined by his disability?
For some of you, maybe it has always been that way. Maybe a wheelchair or an inability to speak has always put what your child can’t do before what he can do. Maybe it was the IEP at school or the extra-curricular activities that aren’t an option.
I realized this today. At 4:13 a.m.
I couldn’t sleep, got out of bed, and because what else do you do at 4am, started cleaning my kitchen. Jax’s backpack had been hanging on a barstool since Friday, and I unzipped it to clean out last week’s paperwork in preparation for the final week of school.
Hoorah! His yearbook was in there! I was so excited about this yearbook. We ordered it at the school’s Fall Carnival months and months ago. We must have been one of the first ten orders. This year, 1st grade, Jax was mainstreamed in a general education class for most of the day. He had an aide with him, but 85% of the time, he was in a typical class. We worked hard for this, we fought hard for this. My son has spent an entire school year talking about these classmates – who made him laugh, who taught him to jump off a swing, who likes Monster High. They learned math, they made paper earths and grew plants in cups.
Every single day, my son took his seat and participated. In this class.
This cheesy, paperback 1st grade yearbook was a symbol for me. In my head, we would look through this yearbook, flip to his class, and remember the little 1st grade faces and the teacher who wrapped him in compassion while she taught. This yearbook was to be the first in line of many school triumphs for my son. Jax clearly wasn’t social chair of his 1st grade class, he wasn’t invited to all the parties or playdates. But he was on the field. He made the game. I flipped to his class to find his school photo, with the alfalfa hair and trademark grin.
They forgot him.
Jax’s picture wasn’t with his class. I didn’t believe it – there was no way – so I checked every single picture like I was looking at a police line-up. There he is in the group snapshot featured in the lower right corner – glasses on, huge smile, right arm raised high into the air – but his school picture isn’t included on the page with his classmates.
I searched the rest of the yearbook. Jax’s school photo is, of course, with the special needs class. Jax is autistic. No matter where he spent the majority of this year, his photo is with the other kids that share this label.
Was this an oversight? I’m sure. But this is the first time I have seen my child as others must see him. This is the first time I have realized that he will be defined by his disability. Jax might be in the typical class, but by definition, he is on a completely different page. He didn’t make the game after all.