Today, as with every day, my heart is bursting with pride for my eldest son Justin, who has severe autism.
This week his private autism school hosted a news conference on the eve of World Autism Awareness Day, an event held by Congressman Chris Smith, co-chair of the House Autism Caucus, and Autism New Jersey.
As with any news conference there is usually a photo opp, and my son was selected to be the “face of autism” that day (the link is below.) There are two beautiful pictures, a close-up of him apparently contemplating very deep thoughts, and a precious one of him working with his talented and adored teacher.
The accompanying article highlights the high rate of autism in my home state, which is 1 in 45 children in New Jersey, the highest rate in the country. It outlines the work my friends Bobbie and Billy Gallagher did almost two decades ago to bring the rising prevalence of autism in the Garden State to Representative Smith’s attention, an act which contributed to bringing about Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000 (the first comprehensive federal program centered around autism.)
I am so proud of the Gallaghers for being pioneers well before autism was a household word, and thrilled that my son’s school was given the honor of hosting the conference.
But as I mentioned before, my heart sings for my son.
Of course it’s fun that his handsome countenance was featured in the Asbury Park Press, the paper of my childhood. I admit, it was a thrill to see him both online (and imagine this) in hard print as well. Quite frankly a few tears were shed yesterday, from both me and my husband too.
But I’m writing about this today not to brag about my son getting media time (okay, maybe it’s a little bit about that.)
I’m writing to you today about hope, and perseverance and love, and never giving up the fight to carve out the best life possible for him, the one he was born to lead.
Ten years ago my son was diagnosed with severe autism. He could barely tolerate anyone in his home, was phobic of strangers, had severe difficulties pairing with therapists, and clung desperately to his parents.
Two days ago he noticed the photographers, acknowledged them briefly, and went about his business of school with a smile.
Ten years ago my son screamed and sobbed whenever anyone tried to work with him, no matter how desirable the reinforcers being offered to him.
Two days ago he worked diligently (and most importantly, joyfully) with his teacher for his coveted bagel chips, but mostly for the love of learning.
Ten years ago we watched as his first birthday came and went, and so did the few vowels and consonants we held so dear.
Two days ago he used an iPad to communicate his wants, and is even beginning to fashion words for us, including two-word sentences which seem like miracles.
Ten years ago I thought I’d never see him smile.
Today, and every day for the past few years, I am witness to the unearthing of his ebullient soul.
Yesterday I cleaned out our local 7-11 of every Asbury Park Press they had (we have a lot of relatives,) and I am certain the photo of my son’s slight smile will make it into his scrapbook. There were phone calls to grandparents, emails to friends, and of course the obligatory status update on Facebook.