Tuesday, December 29, 2015

James' Sensory Processing Disorder Diagnosis

For what seems like forever we have been battling James with his clothes and his shoes. It had gotten to the point that he would only wear athletic shorts (because of no buttons and zippers) and it was at least 30 minutes and crying and meltdowns every morning to get shoes on him. His teacher mentioned that the shoes were starting to be an issue at school (he constantly says they "aren't right" and wants you to retie them and retie them over and over again). Whenever I would look up what to do about kids who have issues with clothes and shoes, I kept finding information about kids with sensory processing disorder. The more I read about it, the more the descriptions seemed to fit James! In all areas: picky eating, resistance to change/transitions, not liking being touched, not understanding/respecting other's personal spaces just to name a few! When I mentioned I was thinking of getting him tested by an occupational therapist for sensory issues to his teacher, she agreed and said that it couldn't hurt to get more information. I couldn't find a place near us that took our insurance, so I called around and found a place we could self-pay. They had a cancellation the next day, so I snapped up the appointment slot! My mom came to watch Rett, since the evaluation takes so long.

I was nervous that he wouldn't cooperate with the therapist so that she could get an accurate view of what was happening, so I bribed him with this toy from Walmart. He picked it out the day before and waiting until the afternoon the next day almost killed him. I think it was the hardest thing he has ever done to not open this toy until then. He even told me that he started to open it, but then he decided to make a better choice and didn't :)

The office was an hour away from our house and we had long time in the waiting room until it was our turn, so James got a little crazy :) They ended up turning off the water to the water fountain with a switch behind the front desk because he couldn't leave it alone. The therapist said that happens alot :)

James did amazing for the evaluation! She tested 7 different sensory areas and found that he had significant problems with two main ones: his sense of gravity and his sense of touch. She said that his sense of gravity issues makes it so that he doesn't have a clear sense of his body in relation to the rest of the world and that one of the ways that it can manifest is a general sense of unease and anxiety, which leads to his fear of change and difficulties with transitions. His touch sensitivity makes it so that his "light touch" sensory system overreacts to things like clothes on his skin or someone touching him (like to hold his hand). She said that to him, it is like someone just came up to him and scratched him really hard. It genuinely bothers him and puts him in fight or flight mode. 

She recommended that he have occupational therapy 1 to 2 times a week for six months and has us starting some sensory exercises with him at home that will help him. One of the things she had us start with him is deep pressure massage over his extremities, especially his feet ideally every 2 hours that he is awake. We don't usually do it that often, but it is amazing how much it helps him. It calms down his overactive nervous system and makes things easier for him to handle. For example, he was jumping around going crazy and we sat down to do our "rubbing" and all of a sudden he was still and looking at this book. It was such a quick change! I just wish it lasted longer :)

I found a pediatric occupational therapy clinic that is closer than where we got his evaluation at, but we have been waiting for our insurance to approve a waiver so that we can take him there. The chiropractor school near us offers free services to kids under age 12, so he has started going there once a week to get adjusted and do some other therapy to help support his nervous system. At his first appointment, the chiropractor checked a lot of his reflexes and discovered that he still has some reflexes that he is supposed to have outgrown, like the babinski reflex on his feet and a rooting reflex in his left cheek (it was crazy to watch, she brushed against his cheek and I saw his eye and cheek twitch). She said that it really common for kids with sensory/add issues to have retained primitive reflexes and that all it indicates is that their brain has some developmental delay. So now we are working on extinguishing those reflexes so that the parts of his brain that were busy retaining them will be freed up to work on integrating his senses better, concentration, impulse control, and all those higher functions.

He is becoming a pro at getting adjusted and at going to appointments. Pretty soon he will have the weekly chiropractor appointments in addition to 1 or 2 times a week at the occupational therapist. Thankfully all of those appointments are like going somewhere to play, so he doesn't mind them.

So, life has gotten a little busier for us dealing with insurance, appointments, and all that stuff, but it has been so nice to feel like we understand James more and why he does the things he does. I've kept his teacher updated on all of his results and she has been amazing about it. She has always been very kind and understanding with James, but she has had professional experience with kids like him before so it is nice to know that he isn't being misunderstood when he has his meltdowns or outbursts. It also has given us hope as parents to know that there are things we can do to help him and that it is ok to have different expectations for him. The Sunday before his initial evaluation, I got released from my calling as primary president, so it definitely felt like Heavenly Father saying, "let me help ease your stress" which was a very welcome blessing!

1 comment:

Happy said...

Wow, how fascinating! I'm so happy for all of you that you have answers and that there is something that can be done to help. And just understanding what's going on must bring you such a sense of relief! A friend of mine has a son who was WILD and struggled in school until he was 11 or 12. He never could read very well, was held back in 1st grade and finally put in resource classes later on. The school tested him again and finally discovered that he had sensory processing disorder, but the visual side of it. They got him some special goggles to use when he was reading and it made such a huge difference, that they knew they needed to put him through the full on therapy, so my friend drove him 2 hours each way ever week for 7 or 8 months to get the therapy. She said that now he is "perfect" and that it was life changing for him and their family. I'm so happy for you all, keep us updated!