I incorporate a massage into Trevor's daily schedule. Not only is it a calming time, it also provides us with speech expansion opportunity. I'm all about infusing therapeutic goals into daily life, as opposed to having specific blocks of time set aside. He's very thoughtful and chatty when he's relaxed. So we talk.
One of his favorite topics of conversation is whatever book I happen to be pleasure reading at the moment. He's noticed me reading my Kindle each night and once asked what book. It was At the Back of the North Wind. Ever since, it's been a thing for us during his massage time. He loves my re-tellings and is surprisingly capable of digesting some of the more complex elements of the story-line. His thoughts will often take me by surprise. They are not articulated with grammatical perfection, but they are whole, rich insights which prove the miracle that we are more than the sum of our physical parts.
Currently we're discussing Les Miserables. His love for the story a reflection that he is mine.
The conversation meandered from there to here and back again. Somehow we landed on the subject of co-op. We've been attending a local homeschool cooperative for a couple of years now. It has been a blessing for all of us. This year has been difficult, though. At first I thought it was just our normal "back to school" anxiety and tension, magnified because of the increase in seizures. But his angst has persisted and increased. I'm sure the struggle is not unrelated to his seizures. Not a week has passed without his having a seizure event in class. The most heartbreaking was the one that hit right as he was going to take a sip of water. The girls in his class, so incredibly sweet, were very concerned that he was spilling water down the front of his shirt. I often wonder how knowing non-family have witnessed a seizure effects him in ways not so easily seen; in his heart and soul. But it's more than the seizures. Or more than the seizures alone, to be more accurate. We've struggled to find the "right" classes for him. The classes that are more cognitively on par for him are too full and too loud and just too much for him. The classes that are more advanced, and where he should be by age, are often above his head which is a different kind of "too much". Thankfully our group is extremely supportive and flexible. They have extended grace over us as we've bumbled our way towards the most peaceful choices for him. Even still, it hasn't been easy. We may have to step out for the rest of this year while we navigate these relentless seizures and holistic wellness.
I asked him if he wanted to keep going to co-op.
He was quietly thoughtful for a moment.
Do my teachers know I have special needs?
While his grammar is lacking, his expression is not. I could hear in his tone that this was less question and more statement. This felt like a moment. Like he was giving me a sacred glimpse into the deepest recesses of his heart. Physical needs he has no problem communicating. Emotional, well, emotions are tricky even for those of us with less interesting neurological make-ups.
Gently, with baited breath, I asked him if he wanted his teachers to know. This is a question I've asked myself over the years, as I've shared our journey so openly here. What would Trevor say if he had a voice? My heart sighed as he nodded his ascent. He wants them to know. His face spoke that this was very important to him.
I then asked what exactly he'd like his teachers to know about his special needs. I always want to honor his own thoughts and feelings and try to give him opportunities to express them. This was a beautifully organic moment to that end.
I have seizures.
He said.
And I don't like a lot of words. Too many words I don't understand.
My heart squeezed. I swear you could free fall right into his very soul through those eyes! I nearly did when he turned them on me and added...
Maybe you could tell my teachers 'bout my special needs for me?
I will always be your voice when you need me to be, my dear, sweet, amazing boy. Always
These lines, which had fallen one by one on the paper, were what might be called drops of soul.
- Les Miserables
Comments