I am a professional advocate, I love what I do. Thanks to the supportive man in my life, I’m even planning on law school to (finally) be a disability attorney. I like to lay out my clients’ needs to an IEP committee or hearing officer or agency and negotiate a settlement because the unjust part of a child with a disability not getting what they need PISSES me off (sorry if profanity offends you). I also parent a child with autism. But that doesn’t make me a person with AU. And I forget that sometimes. Actually, a lot.
Being an ally to others’ struggle is one thing—we all learn that in organizing. Allies don’t speak for others, they support their work, however mundane that may be. Being a parent—a Mexican-American parent at that, full of directives and expectations of our child—is totally different than being an ally. It’s something I am learning as I manage the teen years with a son with profound differences. I have to examine my own cultural expectations of a child with disability and his own self-determination. It SUCKS.
When Aidan was a toddler we had the hardest time getting him out the door if it rained. He screamed bloody murder over his shoes touching the wet ground. He shrieked if a leaf blew on his foot. He’s pretty much the same now. If he’s in a heightened state, like tired from being asked to perform a lot during the day, mad because I have asked him to do something and he just wants to stim on videos, he will shriek with a light touch on his arm or with a voice on TV. One of his trainers described it as a cup and we are all filling it throughout the day—but when it’s full, it’s full, there’s nothing you can do to make it stop overflowing. I don’t know what he feels like on a daily basis. I only guess and then try to explain it to his multi-person team.
Last night, Aidan’s trainer came over to direct him in the shower. Aidan had already been in afterschool program with one attendant, and had come home to work with another one for an hour and a half. He needs a LOT of help so I was happy to have the help for the shower. We have charts and stories and lists for Aidan’s bathroom shower routine, so that he will actually bathe while in there, not just stand there and get wet. Maybe that’s not unlike other kids his age (I wouldn’t know) but the amount of effort to get him to do this is exhausting: “Aidan, what letter are you on? Letter D? Letter D is ‘Put shampoo in hand’. Put shampoo in your hand. Aidan. Aidan! Look at my hands. What do you do with the shampoo? Yes, RUB your hands together. Make bubbles. Ok now rub…” And so on and so forth, for about 20 steps.
Aidan was in a great mood when he got in the shower but started screaming a few minutes into it. We could hear his trainer directing him on his steps and Aidan just screamed back. Finally I decided that this could be a teachable moment and went in with his book. I wanted to show him how high he was up the scale and that if he didn’t get down the scale that he wouldn’t get playtime after his shower. He was all soapy and holding his washcloth and was screaming at the tiles when I went in.
I showed him this:
But Aidan likes to say what he thinks he is supposed to say, not what really happened or how he is really feeling. So he can be crying with tears and will respond “Are you happy?”. Meaning he is happy (we are working on the pronoun “I”.
So he looked at the above chart and said “Number 1”. I said “Actually, your face is not like the number 1 picture, it’s more like the number 4 or 5 picture, don’t you think?” To which he got flustered, had a sad face, then blurted out “Embarrassed!”.
Now. Only another parent of a child with low functional communication can appreciate this. Aidan does not have Asperger’s, he is NOT high-functioning. We don’t get much language beyond scripts from movies or shows. He has also only ever said “sad”, “mad” or (his favorite because he thinks people like him to say it) “happy”. To say he’s hungry, sick, or tired all have to be prompts from other people. I have also NEVER heard him say embarrassed.
His trainer and I didn’t know what to do. We backed away slowly and I told Aidan we would give him a few moments alone. Then I called his dad to find out if they had even discussed the emotion “embarrassed” (they hadn’t) and Johnny texted his afterschool aide to find out the same. They hadn’t discussed it either. I was elated.
But then I went back to check on him. I told him he was doing a great job talking and we would let him try to finish his shower routine on his own. He just looked at me with his big brown eyes and let out the most pitiful cry. He cried in the shower, cried when he was drying himself, cried when I helped him dry himself and put on his clothes. The cries made me want to cry, here I was proud that he was saying a new word and actually identifying a feeling, and he’s just a pre-teen embarrassed by his differences, not understanding how to lather his ears (that’s what started the screaming) and having to be told what to do, all the time, every day. No wonder we get the screaming and yelling and pounding and so on over the slightest thing.
It’s a fine line between being a good parent and pushing your child with AU to learn as much as they can with all the training you can give them and respecting their humanity. If they don’t make eye contact, don’t respond, don’t express things, etc. it’s hard to determine when you are getting in there or not. I was very sad after the crying subsided, as I usually am when he reaches a milestone. It’s a mixture of happiness/sadness/frustration—not unlike what Aidan must feel. I feel happy about the fact that he expressed something profound, sad about the context—in the shower with a trainer directing him–and what he must be feeling about himself. I’m frustrated that I have to keep pushing and managing his daily trainings when I want him just to ask me to buy him expensive shoes or video games and drive me crazy with rolling his eyes or talking back. But that’s not my life, or his.
We all went to bed at 9pm last night, we needed to.