Last week, I mentioned that Tyson has started a new therapy. I've had a couple of emails about him and his sensory stuff, so I decided that a blogpost is in order.
First of all, please let me say that I'm writing this as a mom. Yes, I'm a pretty informed mom, given that I have degrees in music therapy and psychology (specializing in applied behavior analysis), but this is about my little boy. My LilMan. The boy who made me a mom.
In many ways, my education, training and professional experience hasn't been all that helpful with Ty anyway. My emotions blur my vision when it comes to him. My love and concern for him muddy the waters of what I know. And what I see. This is why he is 7 years old, and we are only now beginning to figure out what is going on with him. We hope.
We think Tyson might have SPD, or Sensory Processing Disorder. We are in the process of finding someone who can either confirm or deny SPD as an appropriate diagnosis for him. It's a difficult and complicated task. So, what is SPD? In a nutshell, it is a neurological disorder wherein the brain does not receive and/or process messages from the five senses correctly.
The sensory system is always changing, which makes kids with SPD hard to identify, and even harder to figure out. Some days, everything seems to be functioning normally and there are few snags. Other days everything is out of whack and nothing happens without arguments, tantrums or tears. Kids with SPD often appear to simply be behaving badly when they are reacting (or not reacting) to stimuli around them. They are frequently misdiagnosed as being "hyperactive," or as having ADHD. They can also be mislabeled by teachers, parents and caregivers as "lazy," "moody," and "unmotivated."
Some kids with SPD are hypersensitive to certain forms of stimuli. These are kids who have meltdowns when they have to get dressed in the morning because things like stiff fabrics, seams of socks and clothing tags make them crazy or actually cause them pain. These are kids who react with intense emotion and behavior to sounds like box fans, lawnmowers and even the hum of fluorescent lights. These are kids who have hypersensitive gag reflexes and reject certain types of food textures (usually mushy) or flavors. The list goes on...
Some kids with SPD are hyposensitive to certain forms of stimuli. These are kids who may have freakishly high tolerance for pain. They fall down or bump their heads and don't seem to notice. These are kids who are clumsy because they don't know where their body is in space. They can't feel the chair under them, so they wiggle so much that they fall off the chair. These are kids who seem to be hearing impaired because their brains don't register all the sounds around them. Again, the list goes on...
Some kids are a mixture of both. Tyson is a mixture of both. When he was little, we called them "quirks." The way he cried if we asked him to play in dry oats or sand. The way he refused to take his shoes off, even for bed. The way he refused to walk in the grass until he was three years old, even with shoes on. The way he ate everything - and I mean everything - we presented. Hot, spicy, bitter...
You know how when kids are just beginning to eat real solid foods, and parents give them a lemon wedge or a dill pickle, and then the kid screws up his face in that reflexive pucker, and there is a funny uncertainty in their eyes, and it's just the cutest thing ever? Tyson never did that.
When he was little, they were harmless (sometimes amusing) quirks. The way he would eat salsa so spicy that his cheeks would turn red and his nose would run. The way he would insist on covering his entire face with a blanket to sleep.
Sometimes his quirks worried us. His speech was severely delayed. We had to teach him to cry whenever he fell or bumped his head, or whenever another child behaved aggressively toward him. We did this because we were afraid he would become injured and we wouldn't know it. We did this when he was 14 months old because a child at his daycare bit him on the face and he never cried or fussed and nobody knew that it happened until I asked why his cheek was red and then later saw the perfect oval of teeth-mark bruises appear. It worried us that he never slowed down for illness. He could run a fever, and wouldn't show any symptoms until it was near or above 103.
You would think that a kid who had such a high tolerance for pain would be fearless, but Tyson was (and still is) a very cautious child. He hates to fall down. He hates ot take risks. He absolutely hates new and unfamiliar experiences. He is picky about his clothing, and Halloween is a hugely stressful time for him. I secretly cannot wait until he grows too old to dress up because we will have fewer tears for something that should be so much fun.
When he was younger it was cute and mildly frustrating. Now that he is older it is seriously impacting his ability to function in a school setting. He is generally hyposensitive. In SPD language, we would say that his engine runs low. Constantly. His teachers always think he is lazy and unmotivated, that he doesn't care about succeeding or learning. They believe he must have ADHD and (although they cannot legally suggest it) they wonder why we haven't just medicated him already. The fact is that his central nervous system cannot regulate his state of mental arousal correctly. This means that seat work (especially writing and reading) is super challenging for him. It's confusing for his teacher. It's frustrating for him. It's infuriating for me.Homework time is a battle (think General Washington) In first grade my son has about two hours of homework a night. (This is usually about two worksheets + 30 minutes of reading). By the time he reaches third grade I will have to lobby God to add more hours to the day.
So, there it is. SPD in a nutshell. I'll be posting more about this part of our journey as we go.
If you would like more information about SPD, please click here for a great resource.