Some of you may know, but maybe many of you don't, that our son, Noah, has sensory processing disorder (SPD). His brain just doesn't receive and integrate information about sound, sight, feel, etc. like ours do. This has been a really hard road for him (and us!). Usually, we find ways to deal with his SPD, but the last 2 days have just about done me in. For Noah, his body is constantly telling him that it needs input. This manifests in several ways. Mostly, it involves a lot of slamming, into the walls, furniture, other people. It is as if he has no regard for his body. He will run full force into the wall, jump off the counter or steps, slam into his sister, beat his head into the furniture all to fulfill this need he has to put pressure on his body. This goes way beyond just being a reckless little boy. There is a major gap is his neuro-receptors that prevents him from being able to accurately assess risk. It causes him to constantly bite his hands, chew his shirts, and rub his nose until it bleeds. He'll run around with his hands over his ears screaming about how bad "it hurts". He'll talk insanely loud all because he needs his voice to be that loud to register the input in his brain. He avoids certain textures of foods, clothing and things to touch at all costs. Sometimes it is just more than we can deal with.
We knew from about 3 weeks after his birth that something was going on with Noah. He just cried all the time. You couldn't hold him like a normal baby. You literally had to squeeze him to death to make him happy. He wouldn't eat (and still doesn't!) He never slept. When I say never slept, I mean he NEVER slept! No sleeping, no eating, only crying. He was delayed on all of the developmental milestones. We couldn't leave the house. Going to the grocery was a nightmare beyond belief that usually ended with ME in tears. I was defeated as a mother for what seemed like forever. We tried everything imaginable to console Noah. Noah had no words, and would only communicate through screaming and crying. When he was 18 months old, our beloved pediatrician said that maybe we needed to start looking at an early intervention program. Lots of signs pointed to autism, and let me tell you, hearing a doctor use your child's name and autism in the same sentence will knock the wind right out of your sails. I remember getting on the phone with my mom after that doctor visit and not being able to stop crying. It's not that it hadn't occured to Kamron or myself, it was just finally hearing it said out loud that somehow got to me. Noah was evaluated right after that by First Steps, our state's early intervention program.
This has been our saving grace for Noah. Autism was promptly ruled out and Noah began receiving therapy right away. We started with speech and, lo and behold, the child got some words! Then he got lots of words! Then he wouldn't shut up!!! But he was still so unhappy. You couldn't put your finger on it, but something was definately still "wrong" with Noah. Enter occupational therapist (aka Crystal, aka most awesome angel in Noah's life!) Crystal put the pieces of the puzzle together for us. We tracked back the erratic behavior to a sensory stimulus and finally it all made sense! We figured out what triggered the meltdowns: noise, feel, light, lack of pressure on the body; then learned ways to deal with them. This is my favorite: Noah has a weighted blanket that he has to sleep under. This thing probably weighs about 30 pounds. Noah only weighs 27 pounds. The mom in me says "wait, don't put that on top of my baby, it will crush him!" but for some crazy reason, it gives him the right kind of input that he needs to help him sleep!!! Noah can't handle noises. At one point it got so bad that we couldn't go outside if someone in a 2 mile radius was cutting the grass. But Crystal has given us so many strategies for helping Noah cope with these everyday obstacles. For so long we were purely in survival mode, but now Noah is thriving with SPD!
While we have figured out how to manage most of Noah's hangups, some days are still insanely hard. Like the past few days. Days where you want to throw your hands up and scream. But then all that little booger has to do is throw his arms around you and tell you "I love you, Mommy" and it's all totally worth it!
Sorry for the off-the-wall post. This blog is a way for me to champion causes near and dear to me. If I can advocate for just one orphan or just one family with special needs or plug an early intervention program, then why not use this space to do it!
If you'd like to learn more about Sensory Processing Disorder you can check out this website: http://www.sensory-processing-disorder.com/index.html