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When My Medically Fragile Child Received a Diagnosis I Wasn’t Prepared For

“Yeeuup,” my son Von squeals as he 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 five or six more times. He is laughing and smiling from ear to ear. Suddenly he runs across the floor and lets out a huge scream. He throws himself on to the ground, and he looks at me and says, “I’m falling, Mommy.”

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I watch him so closely, and there are many things that flood my mind. Watching him become so physical has been a gift better than I had ever known. 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 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. 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 he saw in the box just behind the chair. Then Von moved to the trampoline, then to the swing, the wall, the play kitchen and 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, and they are either compelled to seek or avoid it. It was a disorder where the sensory stimuli becomes so intense, it affects the day-to-day interactions of the child with their environment. Sensory processing disorder can affect a child’s ability to socialize, speak and 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.”

There were a lot of things I was prepared for in being Von’s mom with his medical diagnosis, but this was hard to comprehend in that moment. I could not fathom how I was going to help my child who was very sick and also had a disorder that impacted his ability to function with the world. My heart sank, and I imagined a completely different life. We went to the therapy to seek help with fine motor evaluation, but we left with a diagnosis of sensory processing disorder.

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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. In clinical terms, he’s seeks vestibular movement. We are constantly working around the clock to fill his 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. He works on his flashcards for speech while on the swings. After four months of speech and sensory integration therapy, Von started to speak. It was the most amazing feeling I’ve experienced. I don’t even care that now Von is pretty bossy.

There are still mountains to climb. 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. This disorder has proven to be just another part of Von. He has tremendous determination and a will to learn, grow and explore the world. While I was scared about what it would mean, now I know 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.

Follow this journey on Without a Crystal Ball and Von’s Super Hero Facebook page.