So we had our two visits with the occupational sensory therapist to set up a program and then follow-up on how it was going. As I had talked about in the previous post on this I was a bit overwhelmed with the information from the first visit. We were supposed to go back in 2 weeks to check in and make sure we weren’t having issue. but of course that wasn’t possible They are so booked up it took a month.

We were having trouble and with no one to check in with. What happened was we did it for 3 days and my son began complaining that he didn’t like the way it felt. He said it bothered him and he refused to let me do the joint compressions or deep pressure. He would only use his exercise ball, therapy putty and chew gum. (by the way I found great all natural bubble gum)

So I had to wait a month to find out what we were supposed to do. A month…ack.

Turns out it’s normal for him to feel that way when you start this therapy. She hadn’t told us that before we started it but I wish I knew that. The therapist explained it’s because he went so long without any treatment for it so now his nervous system was rebelling.

She recommended we modify the therapy to just activities he could do on his own from a list of heavy work activities. This way, we could avoid anyone touching him.

The real hard part here is he’s a nearly 15 year old who isn’t sure he wants to take 10 minutes out every 2 hours to do this. That’s a tough sell for an older kid but we have been doing is letting him use his exercise ball as much as he wants all day/evening.  Turns out he is using at least if not more than every 2 hours.

So we are seeing results and improvements!!  We had a few times in the past few weeks when he could touch paper, or wet his head in the shower or put water on his face. Some days are better than others depending on how much sensory diet activities he does.

With winter upon us…and lots more time indoors to focus on getting those exercises done closer to the 2 hours mark I hope we can make this work. What is promising is that I’ve seen progress…and that’s huge for us because sensory has been his worst symptom for a long time now.

Update: April 2018:  After 3 months of using his exercise ball daily every 2 hours, he is washing his own hair/face. He reports paper is not bothering him! For the most part I see no significant sensory issues. He is a still a bit fussy about water on his face but he is getting there.