I’m a parent to a child with nearly invisible special needs. He’s nothing special, and by that I mean he’s about yay high, blond hair, blue eyes, kind of dirty all the time… I’m not quite sure what people expect to see when you say you have a special needs child. I hear all the time how “normal” he seems and looks of surprise when people meet him.
To the naked eye, my son is a beautiful, wild two-year old
boy. What you don’t see are the hard times we have. The therapies we juggled
for the past two years. How even after all this time he sometimes likes to
neglect one side of his body. Or how his jaw still struggles to find strength
to chew some kinds of food. Or how he gets really overwhelmed sometimes and
bangs his head on things or pulls his hair. Much of our play is work, trying to
increase his strength and coordination, or help his speech become more defined.
Because he appears like every other child on the playground,
I worry about my son. I worry that his teacher won’t understand that he is
dealing with some special needs and that he needs help, not punishment. That
his outbursts aren’t because he is naughty, but because he is frustrated. While
you may see him as a child with ordinary abilities, this boy is extraordinary.
You see, when my son was a baby he survived a traumatic
brain injury that we were told may leave him unable to walk, talk, or go to
school. The milestones that children experience are things that we all meet
with joy- with him, I meet them with cheering & great victory. He doesn’t
walk, he runs. But still I worry.
I already get puzzled looks when I mention therapies. Or
potential diagnoses of cerebral palsy. That’s when that word “normal” rears its
ugly head once again.
I wonder how the world will treat my son when he’s no longer
a tiny cute toddler. When he is faced with the real world that I can no longer
protect him from. When someone may notice that he is a little different. Then
what of this “normal” everyone speaks of?
I wonder if he we will be able to get the resources he needs
to help him succeed when he ages out of early intervention. When our team of
many becomes our team of just us. I am already his advocate, educating people
on the world of Ben, but I will become his fighter if I need. In some ways I struggle, but I think I was
completely meant for this job- we were meant for each other.
Because you can’t see some things doesn’t mean that they
aren’t there. While you may not see his struggles, you may also not see the
miracle. The fact that his victories come with a little extra effort which
makes us appreciate them even more.