The best piece of advice I ever got about raising a child with special needs was to look at how he's doing, not at his medical records or the X-rays of his brain with all the grayish-white blobs where the damage occurred.
Max's 11th birthday is coming up. My 11th anniversary as a mom is coming up. His birth will never be a happy event for me, yet why does it have to still hurt so much? It feels as if I am doing Max wrong by grieving this way. He doesn't deserve that.
As the parent of a child with disability, I read the stories and watch the videos and I'm happy for the kids and parents. But lately, I've had concerns. What happens after the kid's moment in the spotlight is over?
Today is World Cerebral Palsy Day 2013, a great thing for the attention it will bring CP and the ideas people will share for bettering the lives of people with CP. There's just one other thing a day like this needs: a call for more research dedicated to cerebral palsy.
How crushing would it be to know that others think you are a lesser human being? Or that you are an "unlucky child" (who grows into an unlucky adult)? Our kids need every bit of confidence they can get in this world.
So often our kids' challenges are described in terms of impairment (disability, special needs), words that encompass their entire beings. But "rebel" makes it clear it's just a part of them that's acting up. It doesn't let their challenges define who they are.
When people figure that Max has autism because he looks or acts a certain way, or when people think that kids with autism are like Dustin Hoffman in Rain Man, they presume to know what our children are like -- which does our kids a major disservice.
What does it really mean to have cerebral palsy? Until I had a child with CP, I had no clue that it affects every person differently. As with any human, kids and adults with CP are as unique as their thumbprints.
To illuminate why the r-word is so demeaning, why parents take it so personally and why this isn't just about a word, I put together a little quiz I hope you'll share. The prize for acing it: a lifetime supply of compassion, consideration and soul.
I think I speak for many moms of kids with special needs when I say we don't want pity; it's isolating. But a smile or words that say hey, motherhood is tough -- any kind of motherhood is tough -- are reassuring.
No person's merit (let alone a child's) should be irrevocably determined by how his muscles move, the way his brain works, or whether he speaks in the way that people typically speak or looks the way people typically look.