Thoughts About My Son – By Amy Nolet

I have a son I adore. He’s sweet, cuddly, vivacious, witty, and almost seven years old. He’s strong, handsome, and adorable. He likes to play with the neighborhood kids, and I see him introduce himself to others at the park and ask to play with them. He likes to talk about Star Wars and keenly listens to what others say, even adult conversations. He’s easy to be with…except when he’s not.

Like every other kid, he has his moments. He gets frustrated easily, and when he does he might act out by hitting, kicking, throwing or spitting. The problem is that he is nearly 70 lbs, and when he hits or throws it can hurt. He has difficulty verbalizing his emotions, so he acts them out, and we mainly take notice when he is frustrated because that is when it is most critical to attend to them.

Unlike every other kid, he has huge motor-skill deficiencies, both gross and small motor, so that the smallest thing in handwriting can frustrate the heck out of him, and doing his homework is akin to climbing a vertical wall for other kids. Also unlike other kids, his outbursts are extreme. So much so that he is in an intensive support program classroom because his high anxiety levels prevent him from being able to cope in a general ed classroom. If he feels frustrated about something, such as work being too hard, he does inappropriate things to try to get out of this “bad” situation—he will hum until he is ordered to stop, then he will yell or throw something until the teacher has to remove him from the room. He has achieved what he wanted—to get out of the situation—but at a cost.

It’s heart breaking to see how frustrating everyday events are for him. Not being first in line might annoy other kids for a period of time but can send him into an aggressive downward spiral from which he has to physically exhaust himself before it’s over. So many things other kids take for granted–such as understanding social queues, or writing one’s name in a straight line–he struggles with daily. He gets better at handling his frustration, and we get better at helping him, but he still acts out in ways other kids his age don’t, and when they see a 70 lb boy tantruming, they are confused and often don’t want to play with him.

I wish things were easier for him. I wish he could handle his frustration better. But I love him as he is. And even though I want to help him get along better in the world, I don’t want any other kid but him.

This afternoon I am going to get a call from The Seattle Children’s Autism Center to see what his diagnosis is. He went in for testing three weeks ago and they are going to call me this afternoon to tell me what they have learned from that testing. Is he on the spectrum? I suspect he is. Is he high functioning? I suspect he is. Are his cognitive abilities where they should be? I suspect they are slightly below. Am I worried the results are even more serious than I imagine? You bet. But should this change anything about him other than how we help him in the future? Not a bit.

And yet I am afraid that once I get the results I will change my perception of him so that he is no longer “my son”; he is “my son with autism”. I fear that by getting a diagnosis, even I, his mother who loves him more than anyone else loves him (except maybe his father), will pin him down, label him. And I truly do not want to do that. I want to get this diagnosis to help him achieve all he can and be the best person he can be. That is all. I do not want this to diagnosis to be a label, which it so clearly can be. Do other mothers struggle with this issue? I don’t know, I don’t know what other mothers are like, but I want to remember that what ever diagnosis my son gets, he is NOT a diagnosis. He is still what he always was: loving, sweet, vivacious, witty, and almost seven years old.