Today is all about Chocolate Cake. As in this kid. I think about Chocolate Cake a lot. His mother and I spend hours trying to figure out how to help him be OK and productive in a world that has treated him harshly.
Chocolate Cake is 17 years old, on the spectrum, diagnosed PTSD from all the mishandling of him in schools. 13 schools in all. Placements in and out of the district as determined by the district in numerous IEP meetings. Where to put Chocolate Cake was the only question they were trying to answer, when how to provide FAPE for Chocolate Cake should have been the question to answer.
Ah, but to do that, one has to understand Chocolate Cake. One has to observe objectively, abandon behaviorist bullshit, and know him as a whole person. A whole person who has been repeatedly traumatized because nobody understands him. Most people see all the maladaptive stuff and focus on changing it. So more and more control over Chocolate Cake has driven his bus.
And the more everyone tries to control him and call him out for maladaptive behaviors, the worse everything gets. Pretty soon the poor kid is stuck between impossible expectations and nowhere to work out the frustrations or just be a 17 year old boy who takes joy in jokes about farts and body parts and who is just trying to cope with hormones and bad moods and wanting some autonomy and independence.
Because he is just being a teenager.
Because Autism and being a regular kid are not mutually exclusive.
Chocolate Cake is currently receiving services per his IEP by an outside agency in the home. These days and hours drag by and nobody is happy. Chocolate Cake is frustrated and bored. The outside agency is ineffective. Yes, a warm body comes every day to work with Chocolate Cake, but they really do not do much with or for him. His mother has to do all the directing, come up with the structure of every day. Chocolate Cake is supposed to do things in the community like go to the Y, work an hour or so for pay, eat lunch out. He hasn’t been to work in over a month. (I really do not blame him as the job is janitorial)
He has become more isolated, rarely willing to leave the house. My guess is that he is just too sick of being told everything he does is not appropriate.
Last evening I was talking with Chocolate Cake’s mom. She is tired. She is frustrated. She is heartbroken for her kid. She is exhausted because no matter how she presents her perspective on behalf of her kid, she is invalidated and her opinion is minimized. In fact, there is no doubt the school district sees her as the problem.
So she asked me if Chocolate Cake was handed over to me and I was the one providing services, what I would do.
I know exactly what I would do.
I would join him.
Yep, join him. Just hang with him. Just let the days unfold as they will.
This is, by far, is the most effective and humane way to work with kids on the spectrum. This practice of joining was developed by an inspiring couple in the 1970’s who followed their hearts and walked their talk of acceptance and interacting with love when their own son got lost in his world of Autism. I was lucky enough to spend a week at The Autism Treatment Center in Massachusetts. Please check it out here. Spend some time on the web site, watch some of their videos. It is an amazing place to spend your time. That week saved me and my kid.
This is the introductory video if you want to skip the web site perusal.
Mom asked what that would look like in Chocolate Cake’s case.
If Chocolate Cake wanted to spend time playing one of his video games, I would play with him. And I would say things like, “I kind of feel like brownies. I am going to make some. I will be in the kitchen, join me if you want. And while I was in the kitchen I would be having fun. I would crank up some tunes, sing loudly, dance around. If he joined me, great. If not, that would be OK.
Because I know that if I make enough brownies in a fun way, he will eventually join me. He won’t be able to resist.
Yeah, I am that fun.
If Chocolate Cake shakes his butt at me, farts loudly, or does some ridiculously gross typical teenager body part thing, I will laugh and tell him I hope he only does that at home. I would not judge. I would not reprimand. I would simply laugh and say, “Oh my God, good one. Please tell me you would so not do that in public.”
And then we would move on. I would not take something away or point out he was not ready to do whatever activity was next. And I know, with every cell in my body, that in time Chocolate Cake and I would be doing some serious learning, experimenting and interacting. It might take months or a year. But I know that if I joined him for hours a day,every day, Chocolate Cake would make progress.
Because Chocolate Cake is smart. He is brilliant in so many ways. He has things to say and share and interests to pursue.
And like everyone else, he wants to be accepted. He wants to have fun. He wants to feel safe and productive. He wants to belong, to freely express his needs, to be silly, have friends, have others join him in what pleases him.
He deserves that.
Every kid does.