Throughout his life CM2 has had sensory issues. It encompassed his entire day. From being unable to brush his teeth properly, yet needing to have oral stimulation, to not being able to sit properly in a chair to basically being horribly uncomfortable in clothes. Basically, CM2 was unhappy in his own skin.
Unhappy in his own skin. I think that is the best way to explain sensory processing disorder (SPD). Honestly it may be the only good thing coming out of the new DSM5, that they are adding this as a disability. I know even in my district, which gave the boys every support imaginable, they refused to acknowledge CM2's SPD. They gave him OT, which helped with the SPD, basically because he had fine motor issues, and the OT dealt with the problems she saw. However, nowhere in his IEPs is there any reference to his sensory issues.
In fact, I remember at one IEP meeting at the high school, CM2 was leaning on the desk instead of sitting up straight. After he left his special ed teacher remarked that he was a sensory seeker. The chair of the meeting shut her down immediately saying that the district doesn't recognize that disability. Now, of course, they are going to have no choice in the matter. Let them argue with the psychiatric community that SPD doesn't exist all they want. They won't get anywhere, noone ever does with the DSM committee.
Honestly, I never did make much out of the district's refusal to acknowledge his sensory issues. He did get every accommodation he needed, including OT as I mentioned earlier, so there was really no need. In truth, and as with every disability and issue your child has, as they grow older it really is just being able to help them deal with the world and how to handle their sensitivities.
So what did we do and what do we continue to do?
Oral hygiene has always been a bit of an issue. It wasn't that CM2 couldn't brush his teeth. It was that he couldn't stand the touch of the bristles in his mouth. Unfortunately he had no choice. We used to help him brush his teeth. We tried numerous kinds of toothpaste with numerous flavors. We bought superhero tooth brushes. We bought cartoon toothbrushes. We bought special green color tooth brushes for him to try and use. Green being his favorite color. But to no avail. What ended up happening is this wonderful invention called the electric or battery operated toothbrush.
For some reason these brush heads are different and the whirling action seems to help CM2 with his oral sensitivity. I actually think the electric whirl of the bristle creates a type of massage in the mouth that relaxes him. The gums, the teeth and the tongue get massaged. the entire mouth can feel the vibration and even the jawbone is effected by the vibrations, in a positive way.
There happen to be several types of electric tooth brushes. The kind we use has a small round head. that works better for CM2 than the brush with the traditional shape. Yes he is supposed to brush for 2 minutes twice a day. No he doesn't do it for the requisite amount of time, but at least he does brush. Now I know the issue of short brushing time is not because it is hard for him to keep his jaw open either. His mouth opens wide enough when he is eating a piece of chocolate cake.
We also take him to the dentist every three months instead of every six months. We did this especially when he wore braces. It was not an easy thing getting him to keep his teeth clean under that situation. Surprisingly braces were an interesting situation. After the braces were attached and he got used to them, he didn't mind them at all. I thought all hell was going to break lose but nope it was fine. He wasn't particularly happy while they were being cemented onto his teeth..he did try to bite the orthodontist, but in the end, with a little bit of cajoling (in the form of a consequence) he was fine. Certainly he was happy when they were removed, but he wore them for years without so much as a kvetch...What we are having issues with now, though, is getting him to wear his retainers at night. Not particularly certain that this is a sensitivity issue, or a forgetting issue, or an, "I don't give a crap issue especially since my parents want me to wear the retainers," issue.
Another instance of oral sensitivity we have with him is how he eats. As a young child he would chipmunk his food. He would fill up the cavities of his cheeks and then slowly chew the food until it was gone. We worked with him on eating one bite at a time. It took a while but eventually he learned to chew and swallow appropriately. The OT said it stemmed from him not being able to tell when his mouth was full. Again another type of sensory issue. So instead of having him rely on instinct to eat, we had to teach him a step-by-step approach.
Today of course, he eats fine. Our task now is to tell him to slow down when he eats. The need to breathe inbetween bites. Count to ten inbetween bites. But that is not a sensory issue that is a manners issue. However, he does still need to have something in his mouth quite often. He would eat all the time if we let him.
This of course is not good since it can lead to an unhealthy weight. Our new approach is to teach him when to eat, how often to eat and what to eat. We have labeled snacks for him and outlined what is good food and bad food. We also have peppermint flavored hardcandies that he can put in his mouth. We limit those to 5 a day. Peppermint is an appetite suppressant true, but his issue isn't feeling hungry all the time, its needing to have some kind of oral sensation. Yes, this is a new work in progress.
I have to say that this issue was a lot easier to deal with than the oral sensory issues. In today's culture for boys to run around in sweatpants, t-shirts and sneakers is no big deal.
When he was little he did wear jeans and any clothes that we put on him with no problem. But as he aged it changed. He only liked to wear sweats. He didn't like the scratchy feel of jeans no matter how many times I washed them in softener. It felt like sandpaper on his skin. Chinos also were out. He doesn't like anything pushing on his stomach either. Basketball shorts are OK in the summer. They can be a polyester blend. Probably because they are made to be loose and don't constrict his body either.
Shirts had to be cotton. They could not constrict his neck. The shirts also had to be soft. No Izods or Polos, the knit, even cotton knit, were too scratchy. Today he wears long sleeve t-shirts to school. Even the cotton henley's he has are uncomfortable for him.
Socks tend not to be a big problem. Since as a boy he generally only wears sneakers, he is in athletic socks. The seams there don't bother him. I have tried to get him to wear flip-flops and merrils but nope, he only wants to wear his sneakers. He will wear snowboots on the occasion of a big snowstorm however.
At the end of the month we have to go to his cousin's bar mitzvah. He should wear a suit. I hope I can find a light weight one that he will be comfortable in. I know there are summer weight suits and hopefully the store will have some in stock. It's the rest of the outfit that concerns me too..the formal shoes, socks, shirt and tie.
I think that is the hardest part about having sensory issues as you grow up. Its not so much that you can't figure out what to wear at home and how to be comfortable. It's about the expectations of what is and is not appropriate wear in certain situations. There is no way sweatpants are appropriate at a formal function anymore than he could wear sweatpants at an office one day. Yes the rules were relaxed for awhile, but apart from the fact that suits are now once again de riguer in the working world, it never was that relaxed that workout clothes substituted as professional attire.
Yes, Steve Jobs could wear what he wanted, but he wasn't always "Steve Jobs the Apple entrepreneur" either and there are quite a number of photos of him in suit and tie back in the day. It may not be fair, but people judge a book by its cover. Unfortunately for CM2 in the world of adults that cover includes a suit, tie and formal shoes.
Here's another issue. The need to always have something in his hand. The need to touch something. The tactile assurance needed to keep himself calm. As a small child CM2 used to carry rocks around. He had the largest rock collection ever. Then we bought him smooth polished stones, only because it could fit in his pocket and be kept on his desk at school. He liked the smooth surface and to this day enjoys the tactile sensation of polished objects.
Interestingly we tried to give him those squeegee balls that you give a child for anxiety. Some have rough edges. Some of the balls had spikes. Some of the balls are like rubber bands. Some of them you squeeze and it changes colors or shapes. But CM2 didn't like them. It didn't keep him calmer. It annoyed him. He would turn to something soft, smooth and polished to calm himself.
Eventually the rocks gave way to other items. There are the handheld gaming systems and the iPhone. This way he has his comfort items with him that also provide entertainment. I also know that since he always has his iPhone with him, if he doesn't answer it is not because it has been misplaced but that he is being a stinker. Having these items provides him the solace and the sense of security that he needs to be comfortable in the world. Of course in time, this too will have to give way to other more age (adult) appropriate items. But for now, it is fine.
Sensory defensiveness is a big issue for CM2. There is no getting around it. But he has to learn how to manage it along with managing his learning disability, his anxiety, his speech, his memory and his social issues. It's not a wonder it takes our children so long to mature. They are dealing with so many overwhelming differences that they don't have time to concentrate on growing up.
Until next time,