Minion Monday – Perseveration
Today I was all set to write a post about perseveration, which is defined as here, with the quote “lacking ability to transition or switch ideas appropriately with the social context, as evidenced by the repetition of words or gestures after they have ceased to be socially relevant or appropriate” which really describes Zach. I was trying to wrap my head around how it made him different and I couldn’t because he isn’t.
When I look at my nt* friends and their kids they have obsessions too, husbands who read everything they can on their favorite team, wives who spend every moment they have free browsing pintrest. Kids who are talking about, vblogging and playing their favorite game for hours and hours.
Sure Zach has more trouble walking away from the game or tv show he wants so badly to watch/play, because he has trouble with the negotiation.
Think about it, we all negotiate, sometimes with others. Think about a kid who says “Mom, 5 more minutes” or the football lover who says the game is almost over even with the knowledge s/he should have been in bed an hour ago, and knows they will need copious amounts of coffee to be able to function in the morning.
Essentially it is the same thing. He doesn’t have the words. So instead he stresses melts down and acts out. This is his negotiation. After a while, I see the pattern, and I learn to negotiate with him. I see him stressing out and I give him 5 more minutes, with a timer and a consequence. That is my job, I know he will get the words eventually but until then I have to read him, watch him, through the sleep deprived haze, and learn. I am his voice until he finds those words, and so many times I fail him but eventually I do learn.
Now I realize, as he sleeps more and so do I, that I have been screwing that up even more than I thought. I have been very guilty of just saying “He has autism” and walking away as if that explained everything he does. It’s wrong. I can’t do that. I need to do better.
What I am doing is pointing out how different he is, telling others accept him, without understanding him and it is wrong.
I know people, in general, have a hard time accepting things they do understand, much less things they don’t. One of the hardest things for people to overcome is the unknown.I started to think about it like this. Let’s say you are afraid of the dark, no amount of people telling you “It is just the dark” helps. You have to understand there is nothing to fear, you have to believe that nothing is different with the lights off, that no monsters crawl out of the closet or from under the bed. In your head, you need to grasp that things are the same in the room if the light is on or off.
When we go out people will often stare or say rude things because Zach stims and hums in public. He carries his iPad and 2 sets of headphones everywhere. What others see doesn’t explain Zach. They have no way of knowing why he does what he does, sure I can say he has autism and walk away, and I have many times. Not anymore. When someone says or looks at him like that I need to tell them why. Either by talking to them or someone I am with where they can easily hear. They deserve to know he stims and hums to help control his world, to stop feeling overwhelmed.
They need to know that the lights might be too bright or maybe the room smells funny, maybe there is a noise that is bothering him and he doesn’t have the words to tell us. So he does the best he can. If they laugh or make fun I need to remind them that everyone had trouble finding the words to say something, sometimes you just feel something is off and it is hard to describe. Zach has so few words to tell us these things so it is even harder and more stressful for him. When he gets the odd looks it is my job to say “That thing he is doing is called stimming. He does it because he is stressed over something and it helps him calm down. It is a normal behavior with autism, not unlike biting your lip, twirling your hair or tapping your toes.” I have to tell them and be his voice, because he can’t.
When he is humming and playing on his iPad, and someone says he is spoiled I need to stand up and say “He has autism and sometimes the world is a bit much for him so he uses his iPad and headphones to help keep from feeling overloaded. While right now he can’t someday he will and I want him to know how to do it right.
I don’t want him to grow up thinking he is ruled by autism, I want him to realize that he is loved, accepted and cherished. So next time that rude person looks giggles, mocks or whispers, if they won’t listen maybe I will join his stim, and wave my arms and hum along, hopefully he will teach me how. He has taught me more than I could ever teach him I just have to listen. Now it is my turn to help others listen too.
*nt – neurotypical, so in my world someone who doesn’t have autism.