My Family

My Family

Sunday, June 11, 2017

Shades of Grey

The human brain has 100 billion neurons, each neuron connected to 10 thousand other neurons. Sitting on your shoulders is the most complicated object in the known universe.- Michio Kaku


Tell me about it......   The brain is complex.  Add to it one child who on the surface look deceptively "normal" and you have a recipe for disaster.

"He doesn't have ADHD, all boys act that way"
"He can't have Autism, he's social"
"He doesn't have food allergies, let him eat whatever"
"He'll just outgrow that."
"He doesn't have mental illness."

On and on the advice went and still goes.  For children with hidden disabilities life can be more challenging than a child with an obvious one.  Services are openly showered on my daughter but it is like prying a crocodile's mouth open with food in it to get help for my son.

It started young.  I had lots of worries.  I would watch him like a hawk.  Something wasn't right.  I was assured that he didn't have ADHD.  That another child in the class did but not him.  By a teacher misdiagnosing my child valuable time was wasted in getting services.  That's what happened year after year, time after time.  Concerns were brushed aside.

But I persisted and I insisted.  Guess what, people were wrong.  As time passed testing was done. Now that my son is 10 he finally has the services and team in place that he so desperately needed back when he came home at 18 months old.  They say it's never too late, but in some ways it is.  And if it's not late it's going to be harder to correct things.

It's also hard to know where he fits in.  He "passes" in so many things.  He is able to blend in.  When we go places most praise him for being a good big brother.  He plays with the other kids in a game.

But over the years he's learned how to play the game called life.  He puts on a good show.  The outside world doesn't see what happens.  They don't see the child who melts down after spending a day at a family reunion because he's so overwhelmed.  The teachers don't see him come home from school and look at his spelling notebook and watch him cry because he doesn't understand the instructions (to be fair dad and I didn't get what they wanted him to do either.  When I was growing up we brought home a list and studied it.  You know, when dinosaurs roamed the earth.... Now we had to choose from A la Cart activities?!?!).  Or how we've had to teach him to look at labels in all the foods he picks up so he can avoid making himself sick.

I could keep going, but it makes me mad and a bit sad too.  I've long ago come to the conclusion that it's really hard to budge people who aren't willing to look outside the box.  Who are trapped in their notions.  You can't break through glass with a feather.

But it's worth the fight.  I'm thankful for Children's Home Society.  They were the first people to step in and really hear what I had to say.  The ball started rolling.  I'm thankful to the sharp GI doctor in Norfolk who was looking over my daughter and saw my son double over in pain.  The visit that was supposed to be about her weight rapidly shifted to a little boy who stood with tears in his eye and a Dr. who told me, this isn't normal.  For the UVA team who spent days testing him and came back with answers.  For his psychologist who is on speed dial on my phone.  Who helps me understand how to parent a child who has lived through trauma and who gives our family hope.  For his ABA team.  We have the cool Mr. Gabe who comes and plays with him and slips in activities that force him to think about things a different way.  So we keep on fighting, hoping that we can make it better for other parents who come after us.

I'm mostly thankful for my son.  Without him I probably would have gone through life being one of those people who think inside their happy box.  He takes everything I thought I knew about parenting and shakes it and turns it upside down.  Then he burps.  Because there are some things that fall within the realm of normal boyhood.  I don't quite know what the future holds, but I'm happy I get to be along for the journey.