The Story of The Lava Monster: My Son’s Apraxia Story
Imagine you could not speak. You open your mouth, but no words fall out. Being four-years old and desperately wanting to make a friend, Shawn-Michael had to find another way to connect since he was non-verbal.
Enter the Lava Monster. Shawn-Michael would put his arms above his head and hang his hands down like he was showing his claws, in this traditional monster-pose he would let out the most blood curling growl. He would awaken the lava monster inside of him. He would indicate his feet were sticky in the melting lava beneath him and this coupled with his primal utterance signalled the start of the game. The kids would laugh and howl as they ran and jumped and swung up into the tippy tops of the playground equipment to not fall prey to the Lava Monster. He would beam and his eyes would meet mine as if to say, “Yes, I found my way in!”
Each time this game was initiated I thought to myself, ‘He was making friends, things will be ‘ok’, relax, breathe momma.” This game also gave me a chance to sit for a moment with the other parents and feel included in the typical banter about leaving toys out and not eating broccoli; I could leave my usual watchful post as interpreter, social monitor, bully police, and often - only friend. Then one day during our usual park visit I didn’t hear the lava monster make his entry. As I tracked the sound of sniffles my heart sank. It felt like a gut punch, midway through the summer I found the lava monster under the slide. “Don’t make assumptions.” I told myself. He must be resting, after all it's hard work stomping around in the heat chasing packs of children. But as soon as my eyes fell upon him, I knew something was different. The light in his eyes had dimmed. I understood his approximation right away and it broke me. He looked up and said, “I no monster.”
This moment was harder than the day we received his diagnosis of ‘apraxia.’ Maybe because this day I realized what apraxia has taken from us. He started crying.
He signed/approximated, "their turn now?"
I wanted to scoop him up like I did when he was an infant and kiss him and sing to him and fix this, but the realization that I could not ‘fix’ apraxia hit me like a ton of bricks. Instantly all the stages of grief hit at once. How did I miss this?! My heart sank. How long had he been feeling this way? How 'unfair' is this!? Did I do something wrong to cause this? The rich inner imagination he has was the thing that drew kids to him, but would they connect with him without words? What I learned that day was that the beauty of children is in their adaptation, we must nurture their spirit and never put limits on their potential; the plan we have for them may be the very thing that limits them. Advocate but never forget what you are fighting for-beauty will always find a way, love will always win. Never forget that they are whole as they are, we do not need to apologize for their lack of communication. We certainly do not need to ‘fix them; we are the ones that have to learn to listen differently. I wrote a poem in my journal to process that day at the park. Two years later I decided it was time to do something with it; I wanted to do a purely charity-based project to continue to increase awareness and give back to the community, hopefully contribute to funding more research. (Shawn-Michael illustrated the lava monster in the story!) I never want another [apraxia] child to feel like they must be something they do not want to be just to make friends. All children are whole and deserving of love and friendship. It has become my mission to make true inclusion the norm. As a society we must learn to listen beyond words as we connect with others. Being inclusive only serves to enrich all our lives. Apraxia is a neurological disorder that affects the brain pathways involved in planning the sequence of movements involved in producing speech. The brain knows what it wants to say, but cannot properly plan and sequence the required speech sound movements. Children with apraxia will not outgrow their speech challenges with maturation alone, meaning that just by being around other children, such as in a classroom will not resolve their apraxia. Therefore, early diagnosis and treatment by a qualified speech-language pathologist is imperative. Please visit Apraxia.org for more information.
Beyond Words: A Child's Journey Through Apraxia By Dana Hall Now Available on Amazon Prime:
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