This blog documents the every-day challenges of a family learning the "rules" of successfully living with a preschooler with sensory processing challenges. I chose the word rules, because his life is a series of rules that he has to follow in order to make sense of the world. Unfortunately for the "External Regulator" these "rules" are very difficult to decipher and fluctuate seemingly as the wind blows.
These "rules" make it possible for him to be very successful in some situations and very "disabled" in other situations. Are these rules good, or bad? Do they help or hinder? Should we push beyond the rules or stay within their safe confines? These are daily questions in our house and we are answering them differently on a minute by minute basis.
I hope this blog provides insight for others unfamiliar sensory processing issues and encouragement for other families learning how challenging it can be to cope and eventually overcome daily setbacks.
We had an uphill battle to get to where we are today. Three years ago, I did not even begin to comprehend the scope of a sensory processing disorder. Sure, I'd heard of it, but I never understood how it impacts EVERY aspect of a child's life. I had to look at life through through a new set of eyes.
From day one we knew something wasn't quite right about Crash. His body was so stiff all the time and he screamed constantly. He was diagnosed with reflux at two months of age, and medicine helped a bit, but it didn't elevate all of our concerns. By 12 months, he wasn't saying any words. He wasn't even babbling, just screaming. Although he was walking, he was more like a walking disaster. You never knew what he was going to trip on or fall over. Even carpet to tile transitions were tricky for him.
Because of my work as a Speech Therapist, I had tools to help him communicate. I started using the Picture Exchange Communication System with Crash, and he made immediate improvement. I was relieved, but thought, "Most children do not need a picture system to communicate. What's going on here?" I talked with the pediatrician and he ran some tests to check Crash's hearing (everything came out normal). So if he can hear, why isn't he talking?
Banging Against Walls
I looked for help everywhere, but kept running into walls. Some experts said he was fine. Others said I could help him myself because I was a speech therapist. Some said he'd grow out of it. One said that unless he was autistic, there was nothing they could do. One offered speech therapy, but only on a limited basis. Crash hated it, and made no progress.
About the same time, more and more sensory concerns were beginning to eat away at me. Changing a diaper was cause for a Crash meltdown, and changing clothes was not much better. He wouldn't touch any of his food and was choking on anything that had to be chewed.
Finally, we had two breakthroughs. I found a local University with a Communicative Disorders Department. The clinic coordinator was WONDERFUL. She listened to my concerns and put together a team of students to evaluate Crash. I cannot speak highly enough of the services that this university offered. They respected the sensory concerns, identified areas for improvement as well as areas of strength, and developed individualized therapy sessions to help Crash attain his goals. Every session was packed pull of motivating activities to push him in all areas of his language development. He loved it, and made real progress.
About the same time, I discovered an Occupational Therapist who specialized in sensory processing disorders. Her resources helped us identify Crash's sensory concerns and develop ways to provide the type of sensory input he needs. This therapist helped us turn our basement into a mini gym complete with a jumping pit, swings, slides and crash pit.
Crash's language went through a huge explosion. I loved working at home with him in the sensory gym in the basement. The more swinging and jumping and crashing we did, the more his language developed. These professionals and their therapy experiences in combination with countless books, internet articles, and sensory integration/sensory processing conferences and workshops have gotten us to the point we are at today.
I am also learning that I can't do this alone. No matter how hard I work, I can't control the environment all the time. He will have to go to school and interact with others and I cannot be there to help him regulate. I am still reaching out for help, but I've learned I have to be an advocate for my son or no one else will. It's been quite a ride. We will see where the journey takes us, and we'll keep you posted along the way.