It’s been a couple weeks since Chris, our eldest son, was diagnosed with Sensory Processing Disorder (SPD). Since then, I’ve probably had a little SPD of my own, trying to interpret the onslaught of feelings and emotions that have hit me. My hope is that this will be a bit of catharsis for me – a way to try to articulate my thoughts. I also hope it’s a bit of education for people who don’t know what SPD is.
So let’s start there. The SPD Foundation describes SPD as “a condition that exists when sensory signals don’t get organized into appropriate responses.” This can happen with just 1, several, or all of the 8 senses (ya, I know what you’re thinking; you thought there was only 5!) And when the brain doesn’t interpret these sensory signals correctly, you can imagine how easy it would be for a child to respond in such a way that doesn’t make sense (pun intended) to the rest of us.
Here’s an example: sound is definitely one of the senses that Chris has trouble dealing with. So loud concerts, fireworks and NASCAR races aren’t as fun for Chris as they are for most people (ok, most people that like NASCAR and he does). He covers his ears, buries his head, and waits for it to be over.
We also had a lot of challenges potty training and have even had several accidents in the past because his “interoception” (one of those 3 senses you didn’t know about) isn’t letting his brain know he needs to go. Until we knew this was part of SPD you can imagine how frustrating it was at a store or restaurant to have to take him potty twice in like 8 minutes because he didn’t realize the first time that he had to go #2 as well.
So that’s a little bit of what SPD is; now for what it’s not. SPD is not Autism, ADHD, or a mental illness. Although nearly 75% of children with Autism have SPD, the reverse is not true; very few with SPD also have Autism. And while 40 – 60% of people who have symptoms of SPD also exhibit symptoms of ADHD, research has shown that the two are unique disorders, each with separate symptoms. And if you first heard about SPD on Oprah, you heard incorrectly that SPD is a mental illness. It’s actually a neurological disorder, having to do with the nervous system.
Until a few months ago I had no idea what SPD was. But after researching SPD we were fairly certain that this fit the symptoms Chris was showing. Even still, when we got the official diagnosis a couple weeks ago, it was a sobering reality. And since then my thoughts and feelings have been all over the place.
First of all I’ve struggled with the concept of labels. I don’t ever want to “label” Chris in one way or another that leads him or others to see him only in that light. Because, the bottom line is he’s much more than a kid who can’t sort out his senses: he’s creative, caring, smart, funny, and generous. But he knows he’s different than his younger brother Nate and Nate knows that Chris is different. And we can’t go on ignoring the proverbial elephant in the room.
I think I came to grips with the label thing when I realized that by knowing for sure that Chris had SPD or not would ultimately help us as parents know how to give him the tools he needs to live a successful life. If we don’t know we can’t help.
That was ever so clear when his “Mr. Chewy” arrived in the mail. A constant battle for us has been keeping him from biting on things. I can’t tell you how many Legos have been destroyed by him chewing on them until they’re unrecognizable. But now that we’ve given him something that he can have in his mouth, not only has he stopped chewing on other things almost altogether, we’ve seen some improvement in his listening ability, and some of the things he does that aren’t appropriate in public (waving his arms when he walks, touching everything and everybody, etc).
And he knows it too. He said to me, “Now that I have Mr. Chewy, I can pay attention better in class.”
Secondly, I’m struggling with the idea that I have a “special needs child.” Not because I’m embarrassed or ashamed of him – I’m not! Even though some of the situations his SPD causes can be embarrassing, he does not embarrass me. Picture me talking to two collogues at the grand opening of a building I helped raise money for. Chris walks up and starts to poke my co-workers in the tummy because he has to touch everything! I moved his hand away and kept on talking but it wasn’t long after that his mother, Suzy, took him for a walk while I stayed for the ribbon cutting.
One of the reasons why I hesitate calling Chris a “special needs child” comes from the fact that I have several friends who are facing much more challenging situations with their kids than what we are facing with Chris. We are well aware that there are diagnoses out there that would have a bigger impact on our lives and on Chris’.
While I’m thankful that Chris “just” has SPD, I struggle with feeling guilty about that emotion. Sometimes I hesitate posting stuff about SPD on Facebook or Twitter because I wonder how it’s received. And while I have been accused (and probably found guilty) of liking attention, my main purpose for posting info on SPD or what Chris s going through is to help educate people about the disorder, not to get sympathy. Prayers are always welcome but sympathy is something I don’t need.
Probably the thing I’ve struggled with most is feelings of inadequacy; that I won’t be able to give Chris everything he needs to be successful in life. Maybe, on some level, that’s the fear of all parents but I think it’s more pronounced in parents of kids with special needs. At least it is for me. I know he’ll get great help from Suzy. Not only is she a teacher, and therefore naturally more patient than I am, she was also a Biology major and just understands this anatomy/physiology stuff better than I do.
The big joke around our house is my misunderstanding of the reason the eye doctor told me I’d need a special contact for one eye. I thought he was saying I have “a stigmatism;” come to find out it is actually “astigmatism” (one word). Now I am pretty good with grammar and I pointed out to Suzy that had he used the proper article and said I had “an astigmatism” there would have been no misunderstanding (I still have no idea what an astigmatism actually is but I know I have one and it requires special contacts)!
Again this is probably one of “my issues” that I have to sort out in my mind. But I know that when it comes to knowing about and understanding SPD, I’m already behind the curve compared to my wife because she’s a super science geek. Then again, I certainly bring humor to the situation and I dare say that sometimes humor can take you farther than being able to name all 208 bones in the human body! I guess that’s why we make a good team.
Again, I’m sure there are plenty of shrinks lining up to put me on their couch to talk about my feelings of inadequacy. Trust me, my “low self esteem” or what ever you are reading into the last couple paragraphs are limited ONLY to this particular issue! And if I’m being honest, it’s not, that I feel inadequate but it’s sobering and humbling to know there’s so much riding on this. Because let’s face it; we are responsible for giving Chris the building blocks he needs from to build a foundation that will take him through life.
But even with all these emotions and questions that have been floating around in my head these past few weeks, the one underlying thing I’ve realized is that I wouldn’t want it to be any different! I’m so blessed to have two fantastic sons and the SPD is one of those things that make Chris the unique individual that he is. And even if I could turn back time and roll the dice again and maybe have two kids without SPD, I wouldn’t want to lose the kids I have!
So now it’s up to me, up to us, to help Chris figure out how to live and thrive with SPD. It seems like a huge, daunting task: to try and help him decipher these sensations he’s feeling (or not feeling) that are completely different from how I feel them. But I have no doubt that with God’s help we’ll be able to get through this.