I love your brain

One of the more difficult challenges of having a non-verbal child is determining what they are capable of in terms of learning, comprehension, and communication, and how to best provide the boy with the tools he needs to express himself.  It’s no small feat and it’s never going to be just one single answer.  We verbal people take it for granted that we just open up our mouths and words tumble out without much effort and sometimes without thought.

The boy can vocalize, but the hundreds of muscles in his mouth and throat don’t all coordinate themselves so the words don’t all come out clearly.  I know he has a lot to say because of the enormity of the things he’s able to communicate without the use of words.  For him, a look, small gesture, or single sound can say more than a thousand words from any one of us.  It’s remarkable actually.  His friends honestly believe he talks to them, and they understand him.

For several years we’ve been trying to find the best communication device for him to use.  He uses a voice output device that allows him to form sentences or choose words or actions and to “speak” them.  We’ve tried several different devices some with limited success, and currently one with moderate success.  Finding the best way for him to access it seems to be the bigger problem that needs solving.  He’s tried head switches with some success, and hand switches or buttons that work, but his hand coordination is slower than his brain works so frustration creeps in.  Eye gaze is contemplated, which is very Stephen Hawking…The device would be linked to his pupils so when he rested his eyes on the word or sentence, the device would read the gaze…perhaps a simplistic description but very cool nevertheless.   These years are the building block years.  Once the right combination is found, the sky’s the limit.

I spend countless hours wondering what goes on inside that beautiful brain of his.  I know there are scads of brilliant things running through his mind that just need an outlet.  It frustrates me, though I can only imagine how much more frustrating it is to the boy.

I thought I’d explain the title of the blog…My former blog was called Mindless Musings but it wasn’t available on word press leaving me to come up with something else.  I love your brain is a line a song by Frank Black & The Catholics, as well as something I often tell the boy.  I love your brain, you gotta beautiful brain…And he does.  Without giving it much thought, this blog was named.  Perhaps it will change one day, but for now…it works.  In some ways my life is what it is now because of the boy’s beautiful brain.  12 minutes without oxygen at birth left his brain a little different.  His brain has trouble transmitting signals to the rest of him making movement and speech difficult for him.  Fortunately, his congnitive function is strong and he’s bright and capable.  His determination carries him through the rest.  There’s very little that he wants to do that he doesn’t figure out a way to do it, sometimes on his own, and sometimes with help.

Because of his beautiful brain I spent the first seven years of his life with him.  I had not intended to be a stay  home mom when I contemplated pregnancy.  I had a career I worked hard to climb.  Staying home with him was necessity but ultimately not a sacrifice.  Having had the time with him, I understood that I would have wanted that time with him no matter what the circumstance.  I would never have been able to tear myself away after just a few short months of maternity leave.  I wouldn’t trade those years for anything.  I work full time now, and he’s immersed in elementary school and afterschool activities which make him want to live at school most of the time so we both survived the transition to independence without anxiety or angst.

So here’s to beautiful brains…whether they belong to the boy, my husband, strangers, or even me sometimes…they inspire, insight and ignite!