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.
Life, His Way 
I have some questions: how did you find out what supports he needed? Did he agree to their introduction? And if not, how did you introduce them without more meltdowns?
Karla guided us in establishing the supports, especially at school where she came to IEP meetings with us and taught the professionals about what Nick really needed and why. Every new support was a huge relief to Nick because he saw that we were really “getting” him now. He went from several meltdowns a week to none at school and very few at home (maybe once a month nowadays).
At first Karla would talk to him outside of school about what his new IEP would look like, and eventually he was able to participate in the process, asking for certain accommodations or even saying he didn’t think he needed a particular one anymore, and going to meetings as a self-advocate.
I highly recommend reading our IEP story and looking through Karla’s slides on her ASD page (both in my links) to get an idea of the kinds of supports autistic kids need, from the POV of an autistic adult.
It sounds like it would be great if every parent of a child with autism could have someone like Karla to guide them.
I agree. Karla is working in our area to hook up more kids with autistic mentors.
Thank you for this. Very helpful for this wife and mother of beloved guys in the spectrum.
How did you get a sleep schedule going? My boy just doesn’t seem to manage to get to sleep…..
We found that it was really important to keep him on the same schedule every day, weekends included. Bedtime essentially starts at 9:30 pm, when he has to take a shower and brush his teeth. Then he hangs out in his room until 10:30, when I tell him it’s time for lights out and take his Kindle (otherwise he will stay up all night with it). I use alarms to remind myself to remind him, and he is learning to use alarms himself. In the morning, I wake him up at the same time every day; he sleeps through alarms. Getting his body into that rhythm helps him fall asleep at a reasonable time.
My NT daughter has a hard time falling asleep at night and melatonin helps her.
I have often said that every parent with an autistic kid needs to be issued an autistic adult. Just makes good sense. 🙂
Wonderful and powerful post. Thank-you for sharing this 🙂
My son is not on the autism spectrum, but I am definitely working on figuring out how to stop seeing him as “flawed” because he isn’t the person I expected him to be at this point. It’s a hard journey.
Opening your mind is Step 1. 🙂
Support + acceptance = good behavior!. Love that equation! I thimk you need to give yourself more credit for being open to burying your ego and accepting Karla’s help. It’s not easy to admit as a parent that we don’t always get what our kids need. I tend to assume they’re hungry, probably because I get really cranky when I am. My husbnd tends to assume gas, but I wont go there. :). Really enjoy your blog and the power of support and acceptance.
This is a very powerful post. I’ve been using a lot of what Karla posts on her FB page to help me figure out ways to better support my daughter. It’s a work in progress and I still have times when I think “can’t she just quit screaming already?” But as the mom I’ve really changed my tune to SUPPORT vs me expecting her to just “change” or “mature.” I believe that will happen over time, but for now she needs the support.
Thanks for sharing this. Really great.
Yes, good point, they will mature and change as all people do, more slowly than most but they will. And they will grow better with support and patience instead of pressure.