Tuesday, June 16, 2015


**Editor's note: I began writing this a week ago, when emotions were raw, as they still are. This may contain some language that offends and surprises long time readers of mine. While I apologize, I also ask for you to regard the use of this language in the context that it is used. I'm hurting. It's that simple. 

Today, I don't want to accept the hand my son has been dealt. I want to rage and scream, cry and cuss.  I want to demand answers to questions I haven't even formed, and probably never will.

Don't mistake me; this isn't about autism. I've made my peace with that and moved along. I've embraced it, even. I admit the hard and love the mediocre and the great. This other thing, it's different and it hurts.

Today, I'm admitting that I would change my son in a heartbeat.

I would change those scores and words that say "significant cognitive impairment." I would make life easier for him.

I would give him steadier footing on the playing field of life, because this is all so damned unfair. I would jerk away the regression that's stealing so many of his skills, much like I jerk up weeds in a garden.

I'm not sure that I'm supposed to admit here, or anywhere, that I would change my son, or that I'm mad, hurt, or wishing for a miracle of sorts. However, today, I don't care.

This feels different than when he was diagnosed with autism. We were better prepared, perhaps, better researched, definitely. I've known he had a "borderline" cognitive range since he was first evaluated. I expected that score to go up, somehow. But now? There on paper, it's states he's intellectually challenged. And it hurts.

God help the person who calls him "retarded."

Tomorrow, or the next day, I will research until my fingers cramp from the effort. I will find out exactly what it means for someone to be below the 1st percentile in something. I will be proactive. I will acknowledge that this new diagnosis makes sense.

But today, I'm sad. My boy is a great human being and none of that is reflected on a score sheet. I'm scared for him and worry for his future. He wants to work in a train store, which I think he'd excel at, but how would he run a cash register if he can't do simple math any more?

Today, I'm going to vow to live in the present as much as possible because the future is just too frightening.

Today, I'm going to cry, pick myself up, and then, move along.