SPD and Me

SPD (Sensory Processing Disorder) is something we are learning about every day in our house. E has it to some extent since it goes hand-in-hand with autism. He is sensitive to the texture of certain clothing, foods, smells and so on, however, it really is one of his lesser issues. C, on the other hand— he’s a whole other ball of wax! This kid has major sensory processing issues, in my opinion. However, it seems almost impossible to find help in dealing with it.

We always knew that, once C started school, it would make or break him, so to speak, in terms of knowing for sure which behaviors of his were learned from hanging around his older brother, and which issues were actually real. It’s a really difficult situation for us to determine because all we know is what E did at that age, and he was dealing with undiagnosed conditions.

C does attend public school which, where we live, is one classroom with about 30 kids, from 8:30 to 3:00. Yes, we are in a small community but, that seems like a lot of kids in a kindergarten classroom! During the first semester, I counted almost a month of missed days: some actual sick days, and many “sick” days. Those were days when he just couldn’t pull himself together and go. Days when I couldn’t get him out the door. He didn’t “feel good” or he was “too tired.” He frequently tells us that he “hates how long school takes.” He comes home exhausted and cranky every day.

But, once home, he is like a compressed spring that is suddenly let go, and he starts bouncing off the walls. His volume is at the upper levels, which causes E’s volume and stress to go up. It creates such a din in our tiny house, I almost have to yell myself to get their attention.

C loves to run, jump and hop so much that I’m surprised that he doesn’t vibrate with the energy. I can’t imagine this kid sitting for long periods of the day focused on learning. At home, he can’t even sit in front of a favorite show without moving. He’s pacing, jumping or, in some way, moving while watching.

He is always hungry (as boys can be) but he seems to use it as something to do when he can’t think of another way to amuse himself. He is constantly demanding to “DO” something with someone. He is unable to amuse himself most of the time. Then there is the talking; He never. Stops. Talking. Inches from your face, in your ear, or at top volume; he’s constantly talking.

Then there are the clothing issues, the food issues, and the list goes on. I’ve done my reading. I’ve used the checklists. He has SPD. Possibly more. As I’ve previously mentioned, we have been told twice now that he does not have autism. They think he is too social for that. He does have markers, but not enough or not the right ones. Okay. Great. Now what? Is it ADHD? Get the forms from the doc and fill out the parent form. Yup sure enough: ADHD with a side of ODD. However, to get an actual diagnosis, the teacher has to see issues. Now, I know most people love the kindergarten teacher. He is a great teacher and, I mean no harm but, it has been months since I handed him that form and I still have not gotten a response. “C is doing great,” is the most I get. “Fantastic! but um, can you still fill out the form, please?” Maybe he is “doing fine at school,” but he’s totally not “fine” at home.

I’ve decided that the referral process is taking too long. We need help now. So, I start looking online. One of my favorite places online is Pinterest. I have fallen down the Pinterest rabbit hole so many times that I’m surprised I ever look up from my computer. I love it there. So many great ideas and fun things. My limited “me” time turns into untraceable minutes as I go from one great idea to another, and on and on it goes. Sometimes, I find just what I need. Other times, not so much.

One thing that I can find loads of information on is identifying SPD. What I cannot find is how to deal with it. Everything points to getting an occupational therapist that can diagnose SPD and work with them. Great, but what about those of us who cannot easily locate a therapist that does that? In fact, the only one in our entire county that I know of works at the school. She may not even be able to officially diagnose him either.

I love the comedian Brian Regan. This is exactly how it feels.

So I speak to this occupational therapist at the school since she is currently working with E for his needs. She tells me she will speak to C’s teacher and see what he thinks. Problem again is, if he’s not having any issues in class, then there is nothing she can do.

For a time we had an indoor trampoline in the middle of our living room so that C could bounce and jump all the time. It was really great, except that everyone was always tripping over it because we don’t really have space for it. We moved it to the play area in the garage for a time but, recently, just brought it back up.

I sound like I’m talking about a dog but, we try to run him (C, not the dog), play with him, try get his energy out somehow, but it’s not enough. We simply don’t have enough energy ourselves to keep up with him. It’s like he uses all his will power to keep it together in school and just cannot control himself any longer once he’s home. Even on the weekend: his self-control has been all used up for the week.

There are days I think about and plan to homeschool him too. I’d prefer to keep him in public school. I think it is really important that my boys have things that are just theirs. School is one of those things. C has a chance to find out who his is, apart from his brother, make different friends and have different experiences. But I wonder, is it worth it?

So, here we sit with a child that is almost beyond control on some days and we are in a loop of “I agree with you, I’d love to help, but I can’t.” What now?