Oh, such a day.
Today, J-bear was evaluated by the Little Kids Clinic at the Center for Special Needs at Tufts Floating Childrens Hospital in Boston, MA.
Say THAT five times fast.
He was diagnosed by a pediatric neurologist at Floating back in August but upon that diagnosis, they insisted on further, more in depth evaluation of the autism question. He met the criteria, but was there something that the neurologist perhaps missed? What services might serve him best? So on, so forth.
That’s what happened today. For two hours he was seen by several pediatric behavioral fellows overseen by a great attending. The questioning was extensive and exhausting in regards to his history, family histories, all the details pertinent to the potential wheres, whys and hows. Meanwhile, another physician played with with J-bear and went through trying to get his skills down pat.
He wowed them with his mad Jenga skills. If nothing more, he has Jenga.
Anyway after all this exhausting stuff, he showed them just who he was: a bright, sweet, creative, silly and entirely individual little boy. He displayed his need for constant repetitive behaviors and for stimming while also displaying his determination and inventiveness. The only thing I think he didn’t show is how intensely socially motivated he can be but he was not in a room full of very familiar, common people either. That’s a game changer for that.
Every appointment like this, I leave with a deeply confused sense of life. This is just autism. It impacts a lot of his life yet it doesn’t necessarily have to diminish it. Life will be a struggle, a little more so than most, but life can and will still be full and beautiful for him and for us. That appointment and the diagnosis do not change our life, only allow us tools to work with what we have to make everything he might want more easily possible. It’s not like any one of these professionals is going to tell me something that is going to remove my son from me. This is how he was born. This is not catastrophic. This will not end our lives.
It’s just autism.
He will continue to be J-bear being J-bear, the same little boy I woke up to this morning will be the same little boy I put to bed tonight. When there are so many horrible outcomes these things could have had… I’ll take this. I’m grateful for this. I’m grateful for him and all that comes with him.
Now, if you’ll excuse me, my little superhero in training (as the shirt he wore to the evaluation declares) is scattering chip crumbs all over the living room. I bet he believes chip trees will grow if he continues this.