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Autism Awareness: 24/7 365

April 26, 2017

by Sarena James

Autism (1)April is Autism Awareness month. A time when the complex disorder and the multiple families affected by it, are boldly highlighted in blue.

Stories are swapped and shared in an effort to gain strength. I get emails. I get speaking engagements. I get phone calls. I get articles to read. I get tired. Today, just tired.

The last time I was unaware of autism was nine years ago. Completely unaware. I’d heard of it before but there was no reason for its definition to stick in my mind. I knew no one with it, not even a passing stranger in the memory of mind. Autism? Echo, echo, echo.

Then, our son stopped speaking. He started having unusual and repetitive behaviors. He started having tantrums. Fast-forward to the autism diagnosis, the therapies and therapists, the pediatricians (please fast forward through the time the doctor told us that Grant was a boy and boys just developed “slower.” Really?! Sigh.) Fast forward through the programs and events and the marches. Fast forward to today.

Tired. Sometimes it hurts. The awareness, hurts.

Hurts for many reasons, one being I know that the month of May is coming and a number of people can subconsciously go back to being unaware. But every single day, I can’t.

This afternoon was a reminder of that. A meltdown when he got home from school, another one or three, in the car. Not every day is like today. There have been aw-mazing days. Days when laughter and joy were our only supervisors. Moments when hope and light were the profound speakers. Days when progress turned in its visitors badge and agreed to stay much longer than we thought it would. Beautiful days, but today, not so much.

Turned on the television and did something I seldom do, I started channel-surfing on the wave of my own tears. Basketball games, don’t feel like watching. Home renovations, that only reminds me there’s a hole in the wall I need to fix. Flip. Flip. Flip. Wow. Holly Robinson Peete (For Peete’s Sake: OWN). Look at her so gorgeous, so strong, so present for her son who also has autism. Nah. I live this life. Not going to watch this right now either. I need a break, not a breakdown. Then she started doing something that reminded me of myself. She cried. I was crying and now as if by divine intervention of precise timing, Holly was crying too. She was transparent and unapologetically real and that was just as profound as her strength. Strength, now that’s a beautiful thing.

I put the remote down. It hurts, God only knows the unedited hurt. But in this moment, I had another mother “with me” who knew it too. Another mother who gets up everyday, and tries again. In all that I’ve shared onaisle9 it’s been with the sincerest of hopes to help someone through by bringing our human side of this unpredictable journey. Never could I have imagined the intricate highs and lows of it all.

Recently I received a phone call from someone who prefaced the conversation with this, “…will you be willing to talk to this mother whose son is newly diagnosed since you’ve been dealing with autism for a while?” Indeed the road in my rear view mirror is much longer now. The starting line, not as visible as it once was. Things are changing. Grant is changing. Some of our perspectives are changing too.

…please be aware that for some of us the awareness never goes away…

As another April comes to an end, and the blue lights go back to being invisible white, please be aware that for some of us the awareness never goes away, be that a good or a difficult thing. So  if it’s January, February, March, May, June, July, August, September, October, November, or December, I’d ask that when you think to be kind and understanding to a boy or girl, woman or man, who might be dealing with verbal and social challenges the depth of which can’t be seen by the naked eye, please do so. It can be hard sometimes, some days. But your compassion will also be something that we will be aware of… 

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