It's All Part of the Puzzle

Since I was little I have always loved puzzles. My grandma taught me that it is best to get the outside pieces put together first to give you the framework and then move on to the details. Anyone who has worked on a large puzzle knows it can take a long time to complete. You start out with a idea of what your goal is but it takes time for all those pieces to come together to make that completed picture. So is the way with Johnathan and his sensory issues.

 
When we first discovered Johnathan's delays and learned that he was autistic we were only just starting to construct the framework of Johnathan and his inner workings. As with any child the big picture takes a long time to construct and sometimes you have to work a little bit at a time. It was no different with Johnathan as we had to navigate each small section to discover how each part comes together. We were told to expect some sensory issues and that there would be no way to know which he would have until he reacted to those issues.

I think a lot of people don't understand that sensory issues can not only be a hyper-sensitivity (over-response) but also a hypo-sensitivity (under-response) to a stimulus. Anyone can have sensory issues though the responses may not be as profound as some of the sensory issues an autistic person has. Remember autistic people process things differently and due to many being non-verbal it's harder to communicate what stimulus is affecting them.

Piecing the parts of Johnathan's puzzle together hasn't always been easy. I like to think of Johnathan as one of those puzzle that contain large areas of the same color and you have to distinguish those tiny little details to figure out how it all goes together. Sometimes we would find parts that came together with ease and then boom nothing wants to fit together anymore.   

Sensory issues are tied to the five senses and most of Johnathan's sensory issues are sound or texture sensitivities. We continue to learn about what things may trigger Johnathan and work to limit these sensory overloads when we can.  We have worked with various therapist that gave us skills and activities to help Johnathan control some of his sensitivities better. Over time we've found ways to limit the stimulus that caused Johnathan the most strain on him. Let me tell you about some of the sensory issues we have and/or do observe with Johnathan and how we found ways to help.   

Sound: Often people see Johnathan working headphones and they get the wrong idea. The headphones are not playing music, he can hear when he has them on, and they are not something he is required to have. We have Johnathan wear his headphones because we have found this is a great asset to him. When Johnathan wears his headphones it does help muffle all the sounds that he has around him. Being able to filter sounds allows Johnathan to better focus on what is going on. Imagine sitting in a room and every sound happening around you was at maximum volume. For those with a sound sensitivity that is what it can be like. We have found that Johnathan is able to deal with new experiences much better when he has his headphones too. We have learned to pick up on the indicators that tell us when Johnathan would benefit from having his headphones. We often carry a set with us in the car just in case.

Another common misconception is that Johnathan doesn't like loud noises. If you've ever seen Johnathan at the race track or a demolition derby you know that is not true. These are two of the loudest events that we attend and Johnathan is always right up there next to the track to take it all in. I often share the story of a time when Johnathan was with his great aunt at a derby. She was watching him for us while we worked at the derby. While we were cleaning up she called me to tell me something was wrong with Johnathan. When I got over to them Johnathan was crying and fighting to get away from her. She said she was taking him back to the motorhome to sit down and he started crying and fighting all of a sudden. It only took me a second to realize what was wrong. There were still derby cars out on the track waiting to be hauled off. Johnathan could hear them running and see them on the track so he thought the derby was still happening. I carried him inside and set him on the dashboard so he could see the track. He immediately stopped crying and was perfectly content. Soon as the last car was off the track he jumped down and went to play.    

Anyone that has seen Johnathan has probably seen him covering his ears like the picture above. We have people ask us about this a lot because he will do it even if it's quiet. This is more of a coping mechanism for him. Johnathan has sensory issues with this ears (especially the left one). When he was younger he would get upset if anyone would get by his ear. Things like taking his temperature, cutting his hair, and even getting clothes on sometimes was a struggle. It took a long time to get this sensory issue under control but we have. To this day though he continues to sit for long periods of time with this hands over his ears. 

Textures: As I previously mentioned in the post about Johnathan's therapies Johnathan has many issues with textures. Johnathan for the longest time did not like his hands to be messy at all. He always felt the constant need to wipe his hands off if they got anything on them. There was no finger painting, eating with his hands, or even playing with playdough. Even his love for going to the beach was plagued by his sensory issues. He hated how the sand and rocks felt on his feet. As you can see from the picture above he would avoid his feet touching the ground any way he could. I always joked he had such great core and leg strength because he could sit with his legs like that for the longest time. For awhile he would wear his socks down to the beach and once he took them off we had to hold him until he was in the water and could float. Then when he got out of the water we had to carry him back to our stuff, clean and dry his feet, and put his socks back on. He has gotten much better dealing with these sensory issues thankfully. While they'll never completely go away his ability to handle them grows with each new experience.     

One of the most interesting sensory issue we have noticed with Johnathan is he does not get dizzy. He loves to spin on different playground equipment. It amazes me how he'll spin for the longest time and get off and walk away like nothing. Yet Charles will get on, not even spin as much, but get off and almost immediately fall over because he's so dizzy.

We know that Johnathan's sensory issues will always be a part of who he is. While we have been successful in assisting him in dealing with many of the issues we still have days when they get the best of him. I'm thankful that we have learned so much about his sensory issues and have been able to find positive solutions to help when we can. We will continue to help piece his puzzle together and bask in the uniqueness of every piece.