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.

 

Sensory Defensiveness 101

Subsequent to my schooled by a OT post, I wanted to explain what I learned about the sensory system in defensive children.

The sensory system has light touch and deep touch receptors. This gives us our input about what is touching us and where our body is in space. These are processed by the brain and responses created as needed. Most of us have a balance between the two types of touch. Kids with sensory don’t.

Deep touch sensors live in our Golgi tendon receptors found in our joints. This is part of proprioception system.  We need this for our brain to know where our body is and where are limbs are. Light touch (somatosensory)  is found all over the skin/body and the signals are processed by the brain. We need this so we don’t burn ourselves and so we can feel what we are touching.

In children with sensory defensiveness, one side of the sensory system, the light touch system is over-stimulated all of the time.   When this becomes an ongoing situation, the light touch system is on high alert. The brain will create automatic avoidance behavior or responses to the unwanted stimuli.  An example of this is a child that flinched before they are even touched when you reach for them.

The reason severity in symptoms can change from day-to-day is because it is affected by how many “sensory diet” activities that child is doing on any given day. Most children with sensory develop coping mechanisms on their own and will do them when they are over loaded.  Every time they do this, this reduces sensitivity for a short period of time. So if my son had been swinging and used a hoppy ball at several points in the day, he might rate his sensory a 7 instead of a 9 that day. It would look like this on a chart:

The key to correcting the defensiveness is to tamp down the light touch system continually before they ever reach the top of that chart! This is accomplished by regular deep touch input through heavy work activities (sensory diet). Over time this settles down the light touch system and leads to lasting improvements. (** work with a OT to set this program up because it is specific to your child**)

I think my most important message to everyone is please don’t attempt to treat a sensory disorder on your own without consulting an occupational therapist that has extensive training in sensory processing disorder and sensory integration therapy. If they suggest Wilbarger protocol, make sure they went to a seminar by the actual Wilbarger people.

I detail our negative experience when it’s not done properly here.

I want to emphasize that we have not self-treated. My son has developed his own coping activities over the years and he uses them when he wants too. While this is better than doing nothing it isn’t a fix, it’s only damage control.

Don’t wait. If at all possible get an evaluation for a sensory child as early as possible. Keep in mind your school may not be able to treat this appropriately.