Where we have gotten with sensory therapy

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 this therapy. She hadn’t told us that before we started it but it would have been nice to know. 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, 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. 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.

 

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OT Appointment follow-up

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.

 

I got schooled by an Occupational Therapist!

Catchy head line, right? It is also true. With as many books as I have read on sensory processing disorder, it isn’t a replacement for an education in occupational therapy or meeting with one.

We finally convinced my son he needs to see an OT (occupational therapist) for his sensory. I was gladly schooled (yes I know educated is the proper word)  by her and happy to learn some things I didn’t know about SPD.(sensory processing disorder)

In the past my son has had OT or what his school liked to call OT which looks nice on paper. Most of the time, either it wasn’t done properly which I’ll get to in a minute or they couldn’t address things because they “don’t interfere with school” or worse yet, things were simply not being done even though they were in the IEP. This happens more than you think, folks. Apparently the complete and total inability to look at, touch or use paper is somehow not relevant in a school setting?! Yeah, ok. So anyway…..

We spent over an hour with this therapist going over all sorts of questions about my son’s symptoms. What helps it? What makes it worse?, etc and so on. The conclusion is that he has a very significant sensory disorder.  I knew that but his other doctors have ignored this issue for years as if it’s normal for a child to refuse to be examined, or refuse sitting on the paper covered exam table, so it’s nice for someone to finally recognize, that yes, it’s bad.

What we learned are:

  • Sensory disorders usually start out fairly mild but when left untreated they become worse. This leads to a child being hyper-sensitive most of the time and that can cause anxiety, problems falling asleep and many other avoidance behaviors.
  • Sensory actually CAN fluctuate from day-to-day which is fairly normal. (Good I can stop driving myself mad trying to figure that one out! see my going mad post)
  • Prior sensory treatment if not done right either doesn’t work or makes it worse.
  • There is help, we can treat this and improve his quality of life! (Yay!)
  • The previous attempt at Wilbarger Protocol was done completely WRONG! (explains why it failed)
  • The sensory diet won’t help if not done properly.

I do want to elaborate on the Wilbarger Protocol problem we had, because I think it’s highly disturbing that so many people try to use this protocol on kids without the proper training. You really can cause more problems and a lot of misery for a child if it isn’t done properly. In fact if you’re doing this wrong, you WILL cause more over-stimulation of the wrong part of the sensory system.  This is what happened to us when school improperly implemented the program.

I did not know that school didn’t implement it correctly. All I knew was that my son got a lot worse pretty fast. He even wet the bed for the first time in his life! I had read enough about the protocol to know that what we were seeing was bad. I contacted school and reported these things and they had no answer for me as to why, so I revoked my permission for the protocol immediately. It was stopped that day.

Why did this happen?

Here is why:

I found out several people at school were taking turns doing the brushing every few hours because the regular OT wasn’t always there. I also learned that they were simply not doing the technique correctly either which means I had also been advised to do it WRONG!

How to avoid problems:

  • NEVER ever try to do Wilbarger on your own. Find a properly trained OT.
  • Find out where they got their training in Wilbarger. Should be from Wilbarger.
  • Find out who will be doing it, it should be the same person every time.
  • The best time is probably during a 2 week vacation when only one parent does all the brushing once properly instructed by the OT.

We should have asked who trained them. We should also have asked if the same person would be doing the brushing each time. We honestly should not have done it at all if the same person couldn’t do it every time, and that person wasn’t trained properly either. We simply didn’t know any better which is why I’m talking about it.  I’ve learned a lot since those early days but it’s now that I’ve discussed it with a private OT, not the school, that we are getting answers.

I also note there are a lot of videos online claiming to give instructions for doing Wilbarger, some of them are actually incorrect which is why you really should work with a properly trained sensory integration therapist to learn the proper method for brushing.

We go back in several weeks to lay out his treatment plan, which will probably include  Wilbarger done properly as well as a sensory diet that the OT will put together for him.

Stay tuned…….