Life Inside The Box
I often hear my 5-year-old son with autism as “being inside a box.” I get that. He’s in there somewhere…he reacts, he can speak a little bit, he feels and he knows when things are not how they should be. So it’s not like he’s just a shell of a person with nothing going on inside. In fact, we’ve tested his IQ and he’s average to above average…he has been in a school for special needs children since he was three years old and he can read…not just small words but he can read words. His favorite thing to do these days, aside from “bumping” on the couch and swinging from the monkey bars, is to yell out letters of words…he might not know what the word is ex: he’ll say…”S….A….M….S….U…N…G” and then yell out “TV!” Okay so he isn’t familiar with major brands of electronics, but he is definitely in the box…somewhere.
What a dad wouldn’t do to know what it’s like to be inside that box. Please, please, please someone invent a device that will allow a parent to place something on my autistic child’s head and I can hook it up to a TV and see what’s going on in his mind. It has to be fascinating. I would bet that he’s seeing colors and images and shapes that we never dreamed of. I bet that when he hears something he sees different things and sounds. Some of it might be scary, William didn’t like the sound of fire trucks, ambulances or trains when he was younger…but what must it be like? Sure some of it is nothing but frustration–communication is so tough because he gets most frustrated when he’s trying to communicate with us and we have no idea what he’s saying. He gets angry and frustrated and we get frustrated because we want to help him and we can’t.
I know other parents with children with autism and other special needs have wondered the same thing. Of course I wish my son communicated with me like typical child. Of course I’d rather not have to wonder what he’s thinking and what he’s saying. But this is the hand that we’ve been dealt. We have to make the most of our situation and strive to give our son the best chance to succeed as possible…that’s what ALL parents should strive for when dealing with children with special needs. He’s in “the box” and I don’t know if we’ll ever get him “out of the box”…we hope and pray and do what we feel is best for him, but who knows what the future holds–but that gives me hope–one day maybe he’ll tell me what he’s thinking and feeling and seeing…until that day, I’ll continue to yearn to know what’s going on inside his bright mind…inside the box.
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Sirens! The whole world stops, the sound fills my head and I can’t see, or rather I see but its all meaningless light that I can’t make sense of. Shaky for a while afterwards. Nothing wonderful in my head, just feels like I am watching your world through a window that sometimes muffles everything.
I also need someone to come inside my head to know that this is serious. I don’t need this “voices” bullshit. My injecting thoughts have been slight, but my body is deteriorating, and you should have been inside of me yesterday when I have a brain damage experience of smelling things that are miles away, seeing outside of myself. When my senses do that, I can’t sleep for fear of dying. It is NOT schizophrenia anymore.