Today I sat and filled out a packet that was ten pages long. Medication lists, doctor’s visits, school performance — the entire history all there in black and white.
Thinking back, I remember very clearly the feelings of frustration and confusion after Nicholas’ first diagnosis.
He was only a toddler. We were just beginning to know this giggling, tantruming, bolt of lightning that had walked into our lives.
But as I sat and heard the diagnosis then, as they told me how all of the behaviors– the ones that had raised red flags in the pit of my stomach where my intuition lies– were typical in children who were, well, atypical…I remember how my heart sank because I felt like I might never really know my little boy at all.
How would I ever have a clear window into his spirit if I could not separate the traits from his various disorders from the real him?
So many times parents will say that they don’t want their children defined by their disorder. They don’t want their son or daughter thought of as an “autistic child” but rather a little boy or girl who happens to have autism. Or whatever the affliction happens to be. And I thought, “Yes. That!”
But how will I know who he is apart from it? (All of the its.)
The truth is, six years later, I still don’t. And I never will.
Because he can never be apart from it. It is a part of him, woven into his fabric the same as his freckles or the fact that I am an introvert. We cannot change it. I cannot change it, but more importantly, he cannot change it. Sometimes it would do us all good to take a breath and remember that.
We have spent a great deal of time, energy, money, and frustration trying to get an atypical child to perform more like one of his typical peers. But maybe that is not the answer. Maybe the answer is to take a step back and try to see the whole picture, and not to keep rubbing at one painted out section of the window.
Because I almost forgot something in my quest for a clear window into my son.
Is the most beautiful kind of glass.