Today I want to share an essay by Leisa Hammett. Above all it is a heartfelt and moving journey to compassion. I hope you enjoy it as much as I did.
Jaded? Vantage Point from 15 Years on the Autism Journey
Uneven stacks of paper protruded from the cradle of my arms. I left the small, crowded exhibition room with more than I’d initially intended. I’d tried to be careful and not to pick up stapled batches of paper, flyers or brochures unless I was fairly certain I was going to reference them. But then there were the smiling vendors who insisted I take home their literature, even if I tried to insist otherwise. As I was leaving, a friend affiliated with an area university handed me more papers. I blurted out: “This overwhelms me! I will take them home and they’ll sit in a pile, unread. I won’t make the time. I have 15 years worth of papers I’ve collected about autism interventions. I’m not interested in repatterning my daughter’s brain. She’s not three. She’s almost 18.” My comment was sharp. My friend knew to take me with a grain of salt.
The event was a Summer Opportunities Fair sponsored by our local autism society and is a superb resource for families. Vendors representing camps, therapies of all stripes, sports, etc., come and share their paper wares. It’s a wonderful thing. I’m just in a different place.
That place. The place where I didn’t think I would ever land. Starting out, a newbie to the autism world, I would bump up against people sort of like me. Jaded from the Journey. The mothers with older children who seemed to let out a collective sigh-combo-eyeball-“roll when I attended my first autism support group meeting and I shared about the vitamin regimen upon which I was going to put my child. Their caustic response: “Been there. Done that.” (I HATE support group meetings!)
There was the angry mother who would rant about services versus research every time I saw her. Personally, I believe in research. But, now that I’m perched perilously alongside my daughter on the edge of the cliff, about to lose the majority of services she has received because she’s “aging-out”…I kinda get it. At least her point. It is tough (yet understandable) to see so many dollars and energy go for early intervention when especially now there is an army of us marching toward the transition to adulthood….And, yes, because of our army of strong voices and because of compassionate responses to us, there is more research and more opportunities for our burgeoning reality. Yet, not enough. And the smart lot of us realize we’ve got to do as we always have, roll up our sleeves and apply the grease toward creating a new reality for ourselves. It’s freakin’ hard work….But, then, it has always been…just with a little more help from our friends in research and service settings….
There was the angry silver-haired man who shook his finger at the Atlanta Autism Society of America conference break-out audience and admonished: “Don’t you young families think that it’s going to get any better for you by the time you are in this stage!” Poof! I blew him off as a combination old fart-hot air bag and in my arrogance believed it would be different for me and my peers. I’d help make it so, by damn! Times were changing….In 15 years, the waiting list to receive services in Tennessee remains the same or longer and meanwhile our Republican governor is threatening to cut the minute funds some of us receive. My words, my meetings, my letters, my lobbying and that of others–to no avail. I’m talking a $1,000 stipend. Does not go very far when insurance quits paying for your child’s necessary intervention services and you decide–as did Grace’s father and I did–to mortgage the house a couple of times so that our child could learn to communicate….
You can read the rest of the article here.