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 but of course they did not have an opening that soon so it was nearly a month. She originally wanted to see us in 2 weeks to check on how we were doing with the protocol in case we were having trouble.
That would have been nice to do because waiting a full month was a mess for us. We were having trouble 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 began to refuse 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 now.
Turns out it’s normal for him to feel that way when you start and to not like it. She hadn’t old us that before we started it but it would have been nice to know that. I guess as she 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, no one would have to touch him.
The real hard part here is he’s a nearly 15 year old Aspie 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 so in the interim he’s doing it when he can and I remind him to do it when I can. Not ideal but better than nothing and it has helped some doing it that way.
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. Short lived though because sometimes we’d have a day or two where we were not getting it done as much as we should.
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.
We have our follow-up with the occupational therapist and I found the appointment very informative but it was honestly a lot of information to cram into 30 minutes. I felt like I understood everything until I got home and felt really overwhelmed by it. I kept trying to go over what she showed me in my head to recall everything we are supposed to do and I’m not sure I got it really.
So I went through all the handouts I got and then headed to YouTube to look for videos to help refresh me on the techniques I was shown. The OT decided not to do Wilbarger on him but rather a combination of sensory diet, joint compressions and what are called “squishes”. “Squishes” involve the application of deep pressure to the muscles in the arms and legs using my hands. This seems to be achieve the same thing as brushing but because he’s so defensive she felt it would be less invasive than brushing.
The primary issues now are implementing this rigid protocol every 2 hours at home with cooperation from a teen. Oh, and also fitting real life in there some where. I do think this is much easier if you have a toddler. We homeschool so that needs to be done daily also.
My blog has been quiet for just over a month in honor of Andy Cutler. Partly because I wanted to dedicate that entire month to him by leaving my post honoring him front and center but also because I’m just still reeling from this loss.
During the month of August we have been struggling with sleep issues that stem back a good year with my son. He gets to sleep, albeit late but then he was waking up every night around 2am and not getting back to sleep until nearly 4am. This was reeking havoc on our entire day because he was just too tired during the day to get much done.
I was too tired from being up late with him trying to get him to sleep too so my troubleshooting was clouded. After talking with a friend she suggested I get aggressive with adrenal support. So I doubled his current dose and he did begin to sleep at night. We had a few wakings after that but it’s settled down mostly. We also added in flower essences for good measure because by this time he was anxious about getting to and staying asleep.
I’m now regrouping myself so we can get back to rounds and whatever else we need to do. We’ve finished his antiviral protocol and his low dose naltrexone treatment. No more thyroid antibodies for now. We see the doc with fresh labs in October so it seems like we have made some progress on that front.
We are working in bits on his sensory and I’ll post about that shortly and let you now where we are now. It’s been hard this past month because I’ve just not felt like I could write anything at all, let alone a post. I guess that’s part of grieving but I know Andy would want us to pick up the pieces and carry on.
So carry on we will!