When you have a child with special needs a new diagnosis is like finding a needle in a needle stack. With every new issue you take a deep breath and by the time you exhale your pity party is over and you begin the “what do we do about it” phase. That one deep breath is all you get, you can’t break down for an entire day, issues arise too often, reminders are constant, and if you broke down every time the halogen of that damn neon sign lit up you would never get anything done.
When Oliver first started showing signs of an SPD, or sensory processing disorder, I thought he was discovering new ways of moving his body. It started simple with waving his hand in front of his face, then tapping his thumb into the opposite palm like he was jamming his finger, then rocking, and finally when I realized something was wrong he was whacking his head on the back of his high chair and laughing while he did so.
When your child has special needs you are constantly meeting new doctors, nurses, aids, therapists, etc. and you begin to notice a trend about the people that are poking and prodding your child. Some of these people simply take vitals and move on, but there are others that make this journey easier, that you give your complete trust to not just because you have to, but because you want to. You can confide in them every outlandish worry and they never look at you like you are crazy. They take every concern as an honest concern and do everything they can to help you. Oliver is lucky enough to have one of these people in his physical therapist Michael. When most people would think that you are looking for something out of nothing when you say you are concerned that your son is waving his hand in front his face, Michael didn’t and he helped me find answers. He gave me a simple sensory survey to fill out and from there diagnosed Oliver with an SPD.
Every thing around us gives us sensory input, the things we hear, see, touch, taste, smell, makes sense right? When our sensory processing functions correctly everything we sense enters our body through our spinal cord, goes up through the brain stem, and then enters the brain as signals that release hormones that make us happy, calm, at ease, etc. When you have an SPD the flow from brain stem to brain is either clogged or flowing too freely. When it is clogged you search for more input to unclog the jam and release those hormones, and when it flows too freely you have trouble handling things like loud noises, flashing lights, or even the feel of some fabrics.
Oliver needs more input, so we now do a therapy called “predictable input”. When you bounce your child on your knee to a certain rhythm after a few bounces the child comprehends that next up is another bounce, then another, and another. So for therapy we do those types of repetitious movements such as throwing Ollie up in the air and catching him, big bear hugs that last three seconds, pause for five seconds, then another three-second hug, you get the idea. Every session ends with joint compressions of the knee, hip, elbow, and shoulder. We do this for 3 to 5 minutes every 3 hours.
I want to do everything I can to better my sons life but I would be lying if I didn’t have an internal pity party for myself when I heard those numbers. What I wanted to say was:
I mean we already do physical therapy every day, and we just integrated occupational therapy, which is a good 10-minute process I have to do before he eats. Every. Single. Time. And now I have to remember to do this every three hours as well? I should just set reminders on my phone so they can go off every two and a half minutes!
But what I said was:
Sounds great can’t wait to see how this therapy helps (smiles widely to hide the panic of trying to remember all of these things).
What I can say is that since integrating the therapy I have seen a change in Oliver and it’s only been a few weeks. His rocking has almost stopped completely, and he no longer likes to whack his head on the back of his high chair, which is a great relief for me. I’m not going to pretend like we do this therapy every three hours like clock work, but it gets done as often as I possibly can being on my own.
The thing that terrifies me the most about his SPD is the A word, Autism. A child can have an SPD and be a “typical child” otherwise, but every single child with Autism has an SPD. You can have an SPD with Down syndrome, but it doesn’t happen all of the time and when it does you can more than likely contribute it to their low muscle tone. So, having an SPD does not mean that Oliver is autistic, but it also doesn’t mean that he isn’t. An SPD can be a sign of Autism, but it isn’t a diagnosis. That is something we will have to wait and see about. He has not other signs or symptoms of being autistic so I am hopeful we wont have to add it to his list of ailments.
There is a chance Oliver will have his SPD his entire life, or it could diminish with time. One thing is for sure though; if we did not intervene and begin this therapy he would have continued to search for ways to find input, which would most likely have led to him harming himself. One thing I am learning very quickly as a mother of a special needs child is that no concern is too ridiculous to ask about. We are their voice, their advocates for these things. I went back and forth about bringing up something that seemed so justifiably Oliver just being a baby, but it turned out to be something much larger. Trust your instincts as their parent and bring up your concerns, and if you aren’t lucky enough to have an amazing therapist or doctor in your life keep searching until you find someone that will listen to you, because a concern that you think might make you sound crazy could save your child’s life.