A note of introduction: This blog series documents the journey through the first two years of my son Jacob’s diagnosis with Sensory Processing Disorder and the beginning of his therapy. While it is informative, it’s mostly one mama trying to figure out how to navigate the overwhelming maze of information, choices, and decisions, while trying to keep it together mentally and emotionally.
Although this isn’t the first in this series, it picks up where the real diagnosis and therapy begin. I hope you enjoy reading about our adventures.
I’ve given the series of entries about Jake and his health problems the title of “Jake’s Tummy”, but since we’ve found out that none of his issues are related to his tummy, I’m switching the name to “Jake’s Fingers”.
I left our second therapy appointment today a little overwhelmed, feeling in over my head and mildly confused. I dug out dictionary.com and figured some stuff out and I’ll do my best at relating we’re up to right now. Every Wednesday, Jake and I are attending one hour individual appointments with Becky, a pediatric occupational therapist. Since Jake can’t communicate using words yet, the process of diagnosis and treatment involves a lot of guess-work based on my understanding of his behavior coupled with Becky’s observations. It’s been daunting, fascinating and overwhelming all at the same time.
Last week did not go well. I wanted to “do well” at the appointment since first impressions are pretty huge. Jake was on day three of Prednisone for a nasty case of croup and as a result, was firmly in touch with his inner velociraptor. I felt like I was taking my prize pony to a show only to have it kick the judge, lay down on the ground and refuse to get up. Becky, understandably, was a little startled by a small person alternately balling himself up while screaming and laying on the ground bawling his eyes out. I lost count of how many times I said, “He’s not normally like this.” I’m pretty sure Becky was thinking “Yeah, lady. I’ve heard that one before.” The velociraptor did leave us for long enough for Jake to sit quietly and play with a toy for a few minutes so I could fill out a ten page questionnaire. Becky and I talked over the velociraptor roars and managed to set a few plans in place for the following week.
This week was much better. We got the results of our questionnaire while Jake, sans velociraptor, played and flirted and was his charming little self. As I understand it, Jake’s problems deal in two major areas: processing and avoidance. He does not process well with his hearing, his touch, his spatial senses (where he is in space), or orally. The avoidance is mostly that unless he is confidant or sure of something, he won’t deal with it. If he doesn’t feel certain of his footing, he won’t walk. If he doesn’t like how something looks, he won’t touch it, etc. Becky said that one reason he exhibits such high energy is that if he doesn’t stop and sit still, he won’t have to figure out where he is in space. When his joints are moving, he can feel them. When he sits still, he can’t. Which must be so scary! And, which is why he still loves being hugged tight and swaddled.
The good news is that since we are on it so young (unashamed pat on my back!) we are getting him the help he needs to be able to cope. He’ll never be “cured”, but will learn how to get over some of his fears and as we strengthen his body, he’ll be more confidant and more able to handle the world.
Our therapy sessions mostly look like we are playing. Today we swung on a big swing together to help him strengthen his upper body muscles. We played in a ball pit so we could see how he does with a lot of little sensations all over his body. We opened jars and put things in them and dumped them out again. We played on musical instruments and laughed at each other in the mirror. Everything has a purpose and it’s fascinating to see how we will slowly desensitize him and help him to get stronger.
Our assignments for this week are to buy “scary” food and have it be near him. The things that bother him are things like the dust on Cheetos, the rock salt on pretzels, applesauce on his tray instead of in a jar, anything too big to swallow whole and anything with texture. Think about what you eat every day and come up with a few foods that DON’T fall into one of those categories and you’ll catch a glimpse into Jake’s world! We are also going to have to take away his precious little car that he uses to steady himself on as he walks. I’m sad about that one because he loves chasing the dogs with it and laughs hysterically when they run away. He can still play with it for a little every day, but since he’s using it as a literal crutch, it needs to be gone for most of the day.
I said earlier that I feel a little lost. There are a lot of words I don’t understand, things I’ve only heard about and issues that I never thought I’d have to deal with as a parent. I’m trying to get caught up and informed and not feel too much like a deer in headlights. My sweet little boy is caught in a labyrinth right now and I’m thankful to have a good therapist who can walk us out of it. And, since so much of what we are doing really is purposeful playing, I’m hoping we can enjoy the journey.
It’s a year and a half since I wrote the above and my son has drastically improved. He has grown up to be a very sweet and funny three year old who is about to enter a preschool program for children with special needs. I never thought we would be where we are now and I hope that if your own child is struggling, please know that it gets easier, better, and one day you will be amazed at how far you’ve come!