Ali Family Autism Truths #26 – What We Are Afraid to Say Out Loud

Ali Family Autism Truths #26 – What We Are Afraid to Say Out Loud April 26, 2015
D swinging with all his might.
D swinging with all his might.

April 26, 2015 – Autism Awareness Month, Autism Truths #26

Sometimes it all feels so fragile — life held together by bits of tape and pieces of string, with prayers and promises. The slightest quiver in the universe and it all falls apart, despite all our planning, all our praying, all our hopes for the future. We can try and secure the future for our loved ones as best as possible. We can try and keep them safe. But nothing is in our control.

Last night our family went in different directions – husband and youngest son to an event that had been planned out long ago, n-laws, daughter and myself to a housewarming party and D at home with a trusted care giver. As is my nature, I texted with the care giver during the course of the evening to check in on D. Towards the end of the night, he texted me to say he thought D had hurt his ankle or foot when he jumped and landed hard on the couch during a brief meltdown.

I called my husband, who was closer to home, and asked him to get home and check on D. By the time I got home, D was asleep, and my husband said though he didn’t think it was serious, we’d have to see how he was walking in the morning.

So, come morning, when I heard D stirring in his room and then get up, I asked my husband to call D to our room. He came in, full of high spirits, perfectly all right. And I let out my breath in relief. It made me happy; it made me angry. Autism advocates and so many autistic individuals argue that one can’t separate autism from the person —  it is an innate part of them. And to hate autism is to therefore hate the person, because it is part and parcel of who they are. For those who realize they have autism, having a positive perspective and pride in who they are is so important for self-esteem and happiness. I get that. I really do.

But, sometimes I despise autism for how difficult it makes D’s life. Despite the sense that line of thinking makes, despite how so many with autism are proud of who they are and like themselves just as they are, despite the fact that I cannot speak for D, and I cannot fully surmise what his thoughts are on his autistic self — despite all this, sometimes I have some serious negative thoughts about autism, specifically about D’s autism. I do separate it from him at times, though it is part of his make-up. Maybe that’s wrong of me. That’s probably an insult to all those who are proudly autistic.

I’m sorry. I really am. But when my teenage son throws himself on the sofa or floor and potentially twists his ankle, and he doesn’t have the ability to describe his pain to me; when I am left with detective work to figure out if it’s something serious or not, that upsets me. When he gets sick in the night with stomach flu and can’t figure out to get up to go to the bathroom to be sick or to come to me for help, and I find him in such a sad state in morning — that makes me sometimes despise autism.

The truth is, D has autism. The truth is, D is autistic. Those two descriptions mean different things. Depending on the day, we hold fast to different descriptions. Because the truth is not easy. But, loving him is.

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