It's Autism Awareness month. My child doesn't have autism. He has Sensory Processing Disorder (SPD). You might have heard of it. You might not have. Many kids on the autism spectrum also have SPD. For those of you who haven't heard of it, here's the long and short of it:
Essentially, SPD is when you get some kind of sensory input ("Hey! That's a bright green neon light!" or "Wow! That electric guitar is really wailing!" or "This sweater must be wool. It's itchy." or "Aunt Marge's Jell-O salad is especially wiggly today." or "SKUNK!!!"), but your brain doesn't quite know what to do with that input. So, instead of rationally dealing with the weird thing going on in your nose/eyes/ears/mouth/skin, all you feel is that something isn't right and that becomes the only thing you experience. That electric guitar is now the only thing you can hear and it's piercing into your head. The neon green light is blinding you. The smell of a skunk is causing you to gag and vomit. The sweater on your skin feels like knives pressing into you, pulling your skin off. The worst part is that the feeling that you're feeling seems like it will never stop. Nothing will cause you to panic like thinking that you're never going to feel normal again.
Sensory kids are also on their own spectrum from being hyper-sensitive, where your senses are heightened beyond what a "normal" person experiences, to being hypo-sensitive, where your senses are duller than they should be. Both are challenges. Kids with hyper-sensitivity shut down completely when they're around too much stimuli. Kids with hypo-sensitivity can't feel their body run into a wall. Both kids with hypo-sensitivity and hyper-sensitivity struggle with transitions. Getting strapped into a carseat? Might as well be a straightjacket. Cutting toenails? Sounds like violating the Geneva Conventions. Kids with SPD have really epic temper tantrums. And they have them a LOT.
Those are the basics. That's the "I Googled it and this is what the Internet told me" version. Let me tell you what it's like to be the parent of a child with SPD.
When the doctors handed me my little baby boy, I knew life would never be the same. This new little person was pink and perfect and we were ready for him (or so we thought). I had read every book. I had fully prepared for welcoming this little light into our lives. We gently strapped him into his car seat, making sure that the straps were just right, exactly as we had learned in our Infant CPR class. He didn't seem too happy about being in the car seat, but it was a short ride home.
By the time we got home (two miles from the hospital, perhaps a total of 10 minutes in traffic), his face was so red that he could barely breathe from crying, and my husband and I were totally panicked. We got him inside as quickly as we could and attempted to swaddle him, as we had learned at the hospital. Babies like to be swaddled, right? That's what all the books said. Well, our baby didn't. No, he didn't like to be swaddled at all. (We learned later, that's a sensory thing.) At the time, all we knew is that our baby didn't follow the rules. I mean, I had read the books. The books say that if the baby is still crying, you should swaddle them tighter. We did. He vomited. And turned reddish-purple with angry crying. We took the blanket off and I nursed him. He quieted down and went to sleep. We were learning that sometimes kids don't fit into the mold.
For the next year, I found myself wondering if he was on the autism spectrum. "He's just smart," my parents would say. "Smart kids don't rock themselves, screaming, in a corner every time they hear a hairdryer," I responded. "I used to do all my cleaning while holding a baby. You can run the vacuum cleaner with your other hand," my mom would say. "Well, I can't when the vacuum cleaner freaks out the baby so badly that he starts vomiting," I would reply. That was my reality as a new mom. I had always babysat, always been around other children, taught Sunday school to four-year-olds, etc. None of them acted like my own child. This was uncharted territory.
I had a good friend (also a new mom) who happened to be an autism specialist, working with kids on the spectrum for the Chicago public school system. "I've known him since he was three months old and I can tell you that he doesn't have autism, but I do think there's something going on there that you should have checked out. Here's the number for Early Intervention." That was a life-changing conversation for me. I called that afternoon and scheduled our "interview," which felt like a SWAT team of child experts descending into my house to evaluate my son and make it look like play. The earliest appointment was three months away. I took it.
A month before we were scheduled, my husband and I took our barely-turned-two-year-old son on a plane to bury my grandmother. Because he had just turned two, he had his own seat, no longer a lap infant. I held my two-week-old infant daughter and we got ready to take off. He freaked out. The seatbelt felt tight on him. He kept yelling, "STUCK!" over and over again. He was wild-eyed and panicked. My husband and I were nearly desperate, trying everything we could to get him to calm down. The flight attendant told us that, if we didn't get him under control, we would have to leave the plane. That's when the woman across the aisle from me turned to the flight attendant and said the magic words, "I think he has special needs." The flight attendant turned back to us and asked us how old he was. "He just turned two two weeks ago." "I tell you what. Because he's so little and just barely two, if it will help calm him, you can put him on your lap." That's the only way we were able to calm him down. We got to my grandmother's funeral.
I turned to the woman across the aisle from me to thank her. "Sensory, right?" she asked. "My nephew has the same thing. Flying is hell. " "Yeah," I replied, "we're getting him screened for that next month." "Well, based on what I just saw, I can tell you that he has it. You'll love the Early Intervention people. They're awesome. And if you get him started early enough, it can make a huge difference."
I've often thought about that woman. Thank you, whoever and wherever you are. Thank you for seeing me and for seeing our scared little boy. Thank you for speaking out for us. Thank you for the kindness. Kindness matters.
Our appointment went exactly as I thought it would. I was almost disappointed that my son didn't have a total meltdown over something trivial, so they could see what I was dealing with. It didn't matter. They came back to me to say that he did, in fact, have SPD, and that he was one of the most hyper-sensitive children they had ever seen. They recommended speech and occupational therapy both twice a week and developmental therapy once a week to catch him up to where he should have been milestone-wise.
I was thrown into a world of digging for little farm animals in bins of sand, rice, beans, and dreaming of the day when we might be brave enough to try touching chocolate pudding or shaving cream. Every single day, I would force his little hands into the "bins of fun" while singing "Old MacDonald" and trying not to let his screaming etch my soul. Every single diaper change, I would brush him like a cat, first one arm from his hand, up-down-up, across his back in a W, to the other arm from his shoulder, down-up-down, transfer the brush from his hand to his knee, brush each leg down-up-down, down-up-down. Then we did our joint compressions. Still shutting out the screaming from my ears. The Wilbarger Brushing Protocol and I got to be good friends. Nearly six years later, I still have the muscle memory.
His therapists became true friends. They celebrated his milestones with me. I burst into tears at the zoo when he voluntarily went to the play area and dug through the chopped rubber "garden" area in a giant tire with the other kids, an area that had caused major anxiety three months earlier, ending in my frazzled exit with a screaming two-year-old and a one-month-old who seemed mildly annoyed. Six months of sand, rice, and beans were working! He engaged socially! He didn't derail when he touched something weird! This was actual proof. I called his occupational therapist when I got home. I could hear the excitement in her voice. "You know, when we were kids, we didn't have a name for this, so kids who had sensory issues back then were just labeled as 'the spazz' or something, right? Now we know what it is and we can rewire the brain. How great is that?!"
It is! It IS great! He aged out of Early Intervention and went to preschool. I found a program where he would get the support he needed in the classroom. He didn't speak for almost a week. At the end of the week, his teacher made a point to say, "We got to hear his voice today!"
That was nearly five years ago. Today, he's done with therapy. His current teacher describes him as a chatterbox. We will always have to work through things (a post for another day), but we're on the other side of scared. Here's what I learned:
1) Trust your instincts. If you suspect that there's something going on, get it checked out.
2) Don't hide behind pride. If you live in a world where your response is, "Not my kid," to a loved one voicing concern, you do everyone a disservice, especially your child. You can't treat something if you refuse to acknowledge it.
3) Have faith in the experts. They want your child to succeed as much as you do and they will often go to the ends of the earth (or at least the ends of an exhaustive Google search) to find the right things to help your child. Also, they know more about SPD than you do, so get on board with their therapy plans. However, you are still the expert on your child. That's why it's so important to build a partnership with your therapists. You need a team you can trust.
4) Find a community. Whether it's online or, better yet, in person, find other parents of kids with SPD. If nothing else, it helps to hear what other parents are doing and that you're not alone. ("I'm not the only one brushing my kid like a cat!") It also helps to know that not every child is reaching their milestones three months early. A community rejoices in each other, whenever those triumphs occur.
5) Be fearless. If you're heading into this particular foreign land, be ready to go in like a lioness. You may have to battle insurance companies, state programs, local educational systems, etc. to get your child what he/she needs. Keep going. Your little one will see your fearlessness and might feel brave because of you. Better yet, talk about being brave in spite of being fearful with your child. Then watch them go conquer the world.
So, that's a little bit of my story about how our family learned about SPD. I hope it helps to hear what it's like for a real mom. For anyone who feels like they're standing at the edge of an ocean of uncertainty, hang in there. You're stepping into a great adventure!