Who’s aware? I hope all the people who don’t lead the life that I do. Self-pity? There’s no such thing to the dad I am.
I’m aware to my core. “I was going to send you an Autism Awareness Day card,” a friend wrote a few years ago,” but I couldn’t find one in the Hallmark aisle.” Why not? God, she was smart.
I am aware when my elder son Alex slams our bedroom door at 8 on a Sunday morning and a few moments later I hear a door slam in the hallway and something tells me to get my ass out of bed and find out what neighbor’s apartment he’s in. Aware when I get check in the mail for $313 in reimbursement from a well-meaning agency for stuff I don’t remember buying but that I wish I could just pay for. Aware that some of that reimbursement money goes to the camp where, for two weeks this coming August, they will make him happy and my wife and other son and I will get some time to sleep.
Aware that Alex goes to a “school” where they do all they can for him – I believe this – and that it will not be anywhere near enough. Aware that I grew up in a world where they could spend on autistic people one way, and that I have stayed alive and now they don’t have as much to spend on autistic people.
Awareness is a crock, a way for those who don’t understand to try to understand. They will be aware but they will never understand until it happens to them.
Aware that Alex will never read what I write here and be mad at me. That I have signed him up for an afterschool program that’s available only to people who have a future in a world where “compassion” is a changing word. Aware that I have no way of knowing what bus he’s coming home on because I don’t have a sure way of knowing if his afterschool program is open today. I don’t know because they don’t tell me even if I ask, because they’re over there and I’m over here.
That now when I say, “Hug for daddy, Alex?” the shoulders meet my chest and that I don’t have to bend over at all. That he will be out there in the world unable to speak or tell me what’s going on until my life is over.
