A Day in the Life

Now that Jeremy has a formal diagnosis of Sensory Processing Disorder (SPD), it's become even more interesting to be his mom. I mean to say, it's a good thing but it's also stretching me as a parent. I knew previously that his outbursts and quirks were part of who he is. I knew, underneath that stuff, he has always been a great little guy with a big heart. Now that I know what to call this collection of quirks and outbursts, it's changed things.

For example, we went to the Woodstock Farmer's Market this past Saturday. It's a beautiful Farmer's Market with a lot of different vendors and offerings. In addition, they play music in the square. The music was quite lovely and, in my perception, was not intrusive or loud. But I don't have SPD. We made a pass at the outer ring of vendors and then moved into the actual square (where the music was playing). I thought it would be nice to sit as a family and listen to the music.

Jeremy disagreed.

He let us know that the music was way too loud and he didn't like it. I'm not saying he used these words. In fact, what he did was make a run for the entrance/exit to the square. Before his diagnosis, Brian and I would have made an exasperated sigh, shouted after him and otherwise reacted emotionally. Now I understand that what is, to us, pleasant music is actually deafening to Jeremy. I know he lacks the ability to say, that music is too loud and I don't want to do that. His limbic system gets activated and it's fight or flight (or sometimes both).

So I can't react the same way. I have to make sure he's safe, but then I remind him what his behavioral therapist said, that he can't just run away from us. I let him know that it was okay that he didn't like the music but that he wasn't allowed to go running into the street. I accepted that he was physically uncomfortable with the music but didn't allow him to just take off and be unsafe.

Today, at OT/Speech Therapy, he fell and scraped his knee. It knocked a scab loose and started bleeding pretty heavy. The speech therapist let me know that he wouldn't let her put a band-aid on it. I am aware of his band-aid phobia. I used to spend the time arguing with him about why he needed to put one on. I still think he needed one. (He recently stubbed his toe and his toenail ended up bloody and ugly. I did, in that instance, wrestle him--with Brian's assistance--into a band-aid.) What did I do, though? Used some Kleenex to wipe away the blood. I tried to apply pressure to stop the bleeding but he started freaking out. Rather than getting myself worked up trying to get him to do what I think is right, I managed the symptoms (the blood running down his leg) and his reaction (it's okay to not want a band-aid, but I have to wipe off this blood).

I'm not allowing myself to get as exasperated anymore. That's not to say it isn't exasperating to not be able to put a band-aid on my son's wound. It's extremely exasperating. The problem is, I'm 35 and I've known him for almost 6 years. I am the adult. He just started therapy for a problem that just got diagnosed. I've known him to be like this for almost 6 years. I am wasting energy if I spend more than a couple of minutes arguing the efficacy of a band-aid with him. There is the way the world works and then there's the way it works in Jeremy's head. That's not going to change overnight, but what can change is how I react to it.

I wanted to cry about the band-aid thing. I know it seems like a small thing, wanting to patch up your child, but it's tough to see him suffering when he doesn't need to be. I know that band-aids aren't magical but it would have stopped the bleeding and it would have made his knee look not quite so scary. As it was, I had to explain to a few people why he had a bloody knee. He didn't care, by the way. It didn't bother him a bit.

I say it's stretching me because it's easier to just get exasperated and throw up my hands. It's easier to call him a bit crazy and just walk away. It takes effort to remind him about what he's learning, to brush him 3 times a day, to incorporate new strategies into our routine.

In the end, it's like all other change in my life. The catalyst was pain. I was so tired of not being able to understand what was going on with him. Now I'm starting to and I have to remember that it is going to get different. That's a good thing but it means I have to put in a little extra effort. I may have to go to bed a little sooner, spend more time interacting with him and less time leaving the TV on.

Honestly, though, he's totally worth it.