Without a Crystal Ball

Our Journey through Chronic Illness & Autism

“Yeeuup,” Von squeals as he is looks at me. I see him bend his knees and bounce on his feet without them leaving the ground. He takes two steps forward. He looks over at me and says again, “Yeeeuup, Mommy”.  I watch him repeat the movement 5 or 6 more times. He is laughing and smiling from ear to ear. He has no idea that he is not actually jumping. In his mind, he is jumping higher than a pole vaulter at the Olympics. I watch him continue to jump. Suddenly he runs across the floor, and he lets out a huge scream. He throws himself on to the ground, and he looks at me and says, “I falling Mommy.”

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I watch him so closely, and there are many things that flood my mind while he thrashes and bangs his way through his afternoon. Watching him become so physical has been a gift better than I had ever known. He doesn’t know or care that what he’s doing is behind for his age. Von has absolutely no idea that he’s not really jumping, not really falling, and he’s most certainly not really climbing what he thinks he is climbing. That’s the beauty in this all though. In Von’s eyes he is accomplishing all of the things he says. No one in this house would dare tell him different. Watching the determination in his eyes as he bends those knees and attempts to lift his feet is amazing to see. It is in these moments that I realize that nothing for Von is impossible.

When I walked in to a Outpatient Occupational therapy clinic last spring, it was apparent to me that Von was behind. We would be outside playing with neighbors and I would analyze and catalog the movements, words, and skills the children his age had already accomplished. I would then compare it to what Von was doing at the time. There was a stark difference in what they could do and what he was doing. As we evaluated his progress, we knew we needed to get Von help with his fine and gross motor skills.

When we walked in to this clinic this sweet, bubbly woman with tightly curled blonde hair approached us with a warm smile. She looked at Von and said, “You must be Von.” He smiled at her and ran to the cars that he saw in the box just behind the chair. Then Von moved to the trampoline, next to the swing, the wall, the play kitchen, the table, and  I realized he just never stopped moving. She looked at me and said, “Do you see how intentional he is in exploring this room?” I had no idea what she meant, but as I watched him I watched a little boy appear incredibly overwhelmed by his surroundings. He needed to touch, feel and explore every single corner. There was nothing left untouched in the room by the time he stopped.

She looked at me and said, “Have you ever heard of Sensory Processing Disorder?” I responded, “No, I don’t know what that is.” She explained to me that it is when the child is overwhelmed by sensory stimulation they are either compelled to seek it or to avoid it. It was a disorder where the sensory stimuli becomes so intense it effects the day to day interactions of the child with their environment. Sensory Processing Disorder can impact the child’s ability to socialize, speak and even move. She looked at me and said, “If I do an evaluation of him, I’m most certain he has Sensory Processing Disorder. It’s more than likely impacting every aspect of his life right now.  This could be one of the reasons he’s behind in other areas.”  In that moment it felt like a bomb exploded in my head. There were a a lot of things I was prepared for in being Von’s mom with his medical diagnosis, but this was really hard to comprehend. I could not fathom how I was going to handle a child that was very sick and also a child that had significant neurological impairments that impacted his ability to function with the world. My heart sank, and I imagined a completely different life. Prior to that moment, I just thought Von was a little hyper and maybe just a tad behind from illness. We went to the therapy to seek with fine motor evaluation, but we left with a diagnosis of Sensory Processing Disorder.

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When we got home, I ran to my laptop. I googled the term Sensory Processing Disorder.  A series of pages, links and websites popped up on my screen. In nearly every single page, Autism was listed as a primary diagnosis that often accompanied Sensory Processing Disorder.  My head fell to my hands. This cannot be possible I thought. I called his therapist and I said, “Do you think Von may be Autistic.” She didn’t think he was in her opinion, but she said she could not diagnose him. It’s been a diagnosis that doctors and therapists had been throwing around since Von had been 18 months. Every time I think we have moved on from someone thinking he has Autism, we have another diagnosis pop up that is consistent with Autism. I had been resisting the word for a long time, but I realized in that moment if he did or did not have Autism really made no difference. It did not change Von or who he was to me.

We jumped in to Sensory Integration therapy. His therapists worked with him on balance, finger dexterity, and helping him manage his need to move. Von is what the therapists call a movement seeker. Or in clinical terms he’s seeks vestibular movement. We are constantly working around the clock to fill his insatiable need to move, swing, jump, climb and fall. As we have integrated swings, slides, rocking chairs, sleds, and bouncing balls in to his life, Von has been able to refocus and learn to speak. They work on the swings with his flash cards for speech. After 4 months of speech and Sensory integration therapy, Von started to finally speak in September. Watching his voice finally open up was the most amazing feeling I’ve experienced. I don’t even care that now Von is pretty bossy. I know we have worked hard in helping his body learn to process and manage the stimuli around him, and because of that work his voice was able to come out to the open.

There are still mountains to climb to manage this disorder. However, day by day Von takes steps forward as we work through all his therapy. Therapy is fun for Von. He goes to see his best girls at the clinic, and always comes home with the happiest smile. What I initially thought would be a debilitating disorder has proven to be just another part of Von. Von doesn’t seem phased by the disorder as he tries to learn. He has tremendous determination and a will to learn, grow and to explore the world. While I was scared about what it would mean, I know now it simply means we do things a bit differently than other families. It means we work harder to help him manage and master his skills, and it means that he has fun crashing, yeuping, and falling.

 

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2 thoughts on “How Sensory Integration Therapy Rocked Our World

  1. joylk says:

    You have just described my 9yr old daughter to a T ! Four our daughter…it started with a brain injury during heart surgery. I just assumed it was something we could not change. I knew of sensory integration disorder from years ago…but this need to move and touch and not stop…I did not know could go with it. We have never had out pt OT, just at school…I know know from you that I need to pursue this. Thank you! Joy

    Like

    1. Oh good! Private therapy will rock your world. It’s a completely different experience! Good luck and thank you for reading 🙂

      Liked by 1 person

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