As soon as we met, I saw Karla as a potential instruction manual for raising my kid. One of the first things she said was that she wanted to teach him to be proud of being autistic, to be happy with who he is. And while I said of course, I want him to feel that way, I didn’t fully realize at that time that the reason Karla wanted to teach him self-acceptance was that I had not done so. Because I had not fully accepted him myself.
I thought I had. But I hadn’t. I still wanted to change him, even though I thought that I wanted to change his behaviors and not who he was at his core. Deep down, if I am really honest with myself, I have to admit that I did in fact want him to be different, and I was sad and frustrated with the aspects of him that were not as I wanted them to be.
In those first few weeks as we got to know Karla and she started spending time with Nick, we emailed a lot, and I mean a LOT. Sometimes after Nick exploded I would lay out every step of what happened, what he said, what I said, in humble self-baring detail and ask her what went wrong. She could always pinpoint the moment at which I had “lost” the battle… but she kept pushing me to look back far earlier to the root cause of the problem, which always led back to my having an expectation of Nick that was unreasonable—and that was rooted in my attempts to change him.
Example: Before we had his current IEP in place, Nick often had meltdowns after school (and in school, too). He would yell, call me names, throw things, and was becoming ever more violent. I saw this as bad behavior and issued consequences for it. He would argue and yell even more and we’d get locked in a spiral of me trying to make him stop and him just getting more angry.
I thought I understood what triggered his meltdowns but needed help stopping them. Karla informed me that the things I thought were triggers were happening way too late in the game and that I needed to look for root causes. I’d say he had a meltdown because I asked him if he had homework. After getting more details, she’d say no, he had a meltdown because he hasn’t gotten enough sleep this week and he’s not doing enough physical activity, on top of being overwhelmed every day by school. The homework question may have been the last straw, but it was not the root cause, and punishing him for not answering politely would not stop this meltdown or future ones.
Stubbornly I’d think… I just want to be able to ask him about homework without him throwing a hissy fit. Is that really too much to ask?
Clueless. I was so utterly clueless, not to mention disrespectful and unaccepting in my thoughts.
The poor kid was barely surviving, thrown into a full school day with no supports, teased and provoked, bullied on the school bus, coming home to my chatter and his siblings’ noise, and he’d had to quit his favorite sport because he just didn’t have the tokens for it anymore. And my big complaint was that I wanted him to be polite to me? What about what he needed?
Clueless. And Karla told me so, in many different ways, over and over again until I started to understand.
It was really hard to hear that I had been wrong. I thought I was doing everything I could to teach and guide my kid, but I had failed to provide him with the supports that he actually needed, and I had not learned to accept him.
Now here was this person who could really understand Nick because she had already lived his life. And for some reason I trusted her immediately—maybe because her answers and suggestions were always so logical I could not argue with them, maybe because of her complete openness. Whatever it was, I am indescribably grateful that I was able to hear the message, dig a hole and bury my pride in it, and open my mind to a whole new way of thinking.
This new way that has led to my kid having the supports that he needs, including a short school day, protection from bullies, a strict sleep schedule, better diet, and the right to advocate for himself. I accept that he is just fine as he is and my job is not to change his behavior but to support him to be the best Nick he can be. And guess what? Properly supported, he is a lot more likely to answer me politely when I ask him about homework. Support + acceptance = good behavior!
Sometimes, being wrong leads to all sorts of things going right, if you can just hear the message.