Hindsight is 2020 right? But thinking about how much I cared what other people thought for the past year really has me reeling. My son has borderline autism and sensory processing disorder as well as a speech delay and low tone. I would hear things like “you always give into him don’t you?“ Or “he really controls you doesn’t he?“.
I never knew what to say to these questions at the time, but I have a whole lot to say now. See the thing is, I wasn’t giving into him when I let him watch the TV show that he wanted or pick out the pajamas or have his favorite snacks. Because if he didn’t get those things, he didn’t know how to move on from them, and each time he became so upset that he would end up screaming and crying for minimum of an hour. Then he would be so disregulated and exhausted that he would usually fall asleep on me once he *finally* calmed down.
And let’s get one thing straight. he was not controlling me. He was showing and telling me the only way that he knew how what he needed to stay calm and regulated. At the time I was the only one that could help him achieve that status. His sensory system was so messed up that you can compare it to a baby crying and not being able to calm down on their own and needing to be picked up. Except he wasn’t a baby, he was a three-year-old but he still needed me to be there to be the comfort and support for him to help him calm down until we could get to a place and find the right therapies to teach him how to do so on his own. Which we are still working on but have made great improvements.
While I was constantly there for him and helping him the best way I knew how, my own mental health was deteriorating without me even realizing it. I kept questioning whether or not these outsiders were right and I was letting him completely rule me or if I was somehow helping him. What I know now is that I was absolutely helping him by avoiding his body going into this severe state of stress that already happened too frequently. I wish someone would have told me that I was doing the right thing for him and that I wasn’t creating some entitled brat or setting him up for failure by giving in and letting him have the things that he needed at the time. I wish that someone would have told me that those were skills that could be taught later when he was able to regulate himself a little better. I wish someone would have told me to ignore the noise of other peoples opinions (because that’s what they are), and to trust my gut because it turns out I knew exactly what he needed during those difficult times last year.
When discussing all of our concerns about him with his therapists at the time or his doctors I would always say “I don’t know whether this is sensory or behavior.“ And often times I would be told that it’s probably a little bit of both. But what no one told me is that you can always change the behavior. The sensory system is the most important and if that is not addressed first you’re never going to be able to change the behavior. I wish someone had told me that.
