Sensory integration. I had never heard of it until Marcus’ Joubert Syndrome diagnosis. When I saw it mentioned on a list of problems I was told he would face, I didn’t think too much of it. I thought it would be the least of our worries compared to probable vision loss, kidney failure, and potentially not walking or talking. Little did I know that sensory processing difficulties are one of the most debilitating, heartbreaking, and frustrating handicaps that so many with JS face.
For those of you who are unaware of what it is, let me try to explain with my limited knowledge. Sensory integration is basically the ability to process all that a person experiences through his or her senses and make sense of it, allowing him or her to function in daily life. Some people have likened it to an airstrip, where hundreds of planes can take off and land in one day. When sensory processing is in sync, all the planes can come in and leave smoothly, on time, and efficiently. When sensory processing is off, it results in utter chaos and is potentially cataclysmic.
Those with sensory processing difficulties, such as people with autism, can have seemingly unreasonable fears to certain senses. Certain sounds, textures, touches, smells, sensations, can cause them to act out in unfavorable ways, but are usually mechanisms for them to cope with experiences that to them, are chaotic and even frightening. Sometimes, these people can have a “system overload” without even realizing it until it’s too late and then one little thing can set them off into a breakdown that can send them spiraling.
Until Marcus was about 3 years old, he had perpetual open scabs on his knuckles and behind his ears. He slept on blood-stained sheets because he would rock on all-fours, rubbing his hands and ears on his bed, banging his head on the wall or on his crib. It was his way of coping with his sensory issues. On top of that, his JS made it very difficult for him to regulate his sleep, so we would be up several times at night, trying to keep him from injuring himself while he fought to get any sort of restful sleep. During the day, we had to constantly make sure he had the right distractions so that he wouldn’t thrash himself in his carseat or stroller. Needless to say, car rides and going out were very tiring and caused much anxiety. Things were difficult at home as well, as he would scream or rock violently if left alone for too long. I was his security blanket, as he needed me to be with him for every single thing. And with little sleep at night and seeing Marcus suffer so helplessly, it was an incredibly trying time.
One of the most frustrating and humbling parts of sensory processing difficulty is that there’s no one sure answer to help our children. There are different techniques such as brushing, swinging, deep joint pressure that are helpful for some. For others, medication can help. Some others have sought out alternative therapies or dietary supplements. But all in all, there is no magical cure and many suffer through it continuously. My heart is especially burdened for other JS parents whose children injure themselves or even others and are unable to adequately communicate their pains and frustrations. I’ve had a tiny taste of it and it is in one of the most heart-wrenching parts of the Joubert Syndrome monster. It makes daily life almost unbearable. For many families, this is a daily reality and I ACHE for them.
For some reason, Marcus has tremendously improved in this area. He is relaxed during car or stroller rides and he usually sleeps 11-12 hours at night. He still does his self-stimulative rocking from time to time, but we know why he is doing it for the most part and can get him to stop once we address the issue. His knuckles and ears are no longer opened up and he is an incredibly content little boy. He still has several fears that normal boys his age don’t really struggle with, but he has been able to communicate those to us and we know what things we need to avoid with him. However, we know this can all change tomorrow and we are already in prayer for the puberty years, since there are so many kids with JS who have horrible issues with sensory-related behavior problems during that time.
ALL THAT TO SAY…we are at a peaceful time with Marcus right now.
I don’t know why or how we got here, but we are here and it can all change tomorrow, so I am soaking it up with the utmost gratefulness. The fact that we can spend an entire day outside having fun as a family without anyone having anxiety over Marcus being okay, and then come home to a restful night’s sleep is NO SMALL MIRACLE.
Sure, he’s not walking independently yet and it’s not easy getting him from Point A to Point B, but we all eventually arrive at Point B and Marcus is just fine.
My mother-in-law asked me to today how I don’t get tired carting the kids from one activity to another. I told her I do, but when I see them enjoy themselves and I capture their smiles, it’s all worth it to me. Who knows how long this season will last?
I do not and cannot take it for granted.
Instagram collage inspired by Kelle Hampton of Enjoying the Small Things.