I’m aware of tattered vacations, destroyed objects, broken hearts and broken dreams under the siege of autism.
I’m aware of what is it like to watch your child be denied places in school, friends and even family relationships-not because any one is cruel-but because they “don’t know how” to help and I’m too caught up in surviving to teach them.
I remember the first time my neuro-typical children said, “I love you” unbidden. It was early on in life and said often. I remember the squishy hugs and squeezes, the eskimo and butterfly kisses, all as proof of the exuberant joy of childhood. I have copious supporting evidence in pictures, movies and funny stories to tell again and again, undoubtedly they had a happy childhood.
Autism has been a thief of those memories with my autistic son. Pictures and the like serve merely as proof of life absent joy. There were brief moments – “almostings” – of joy, the mere recognition of which seemed to disburse them into the ethers leaving me wondering if I was just imagining it. I have meager stories, even meager still are the photos, school made projects plastering my refrigerator and invites to a friends birthday party.
Heartbreak for me has entailed a succession of thoughts based on the cold realities of autistic experience: uncertain my child could ever find authentic self-initiated preferences that made his heart soar, knowing the robotic preservations of his autism were surely not the same. Uncertain my child loved or even knew what love was. Uncertain he loved me. Uncertain I wasn’t just another placeholder in the routine of his life.
Conversely, the specter of certainty persisted with: whatever ‘good’ my son had now would be taken away upon death of his parents. Certain he could do more in the world and certain there was no open door to facilitate that. Certain the system of ‘help’ was clearly internment of human beings masquerading as ‘for their own good’, a mind-blowing concept that somehow society has accepted without pause.
I have quite a bit of awareness. So much so I’m not sure what to do with it most of the time. My awareness has me cautious of my words for fear I’d actually say, “wake the EFF up!” to the person who is giving me ‘looks’ in public at a loud noise or behavior from my son because they have no ‘awareness.’
Awareness pop quiz:
- How many autistic students learn in classrooms alongside their neuro-typical peers? (Sorry, recess, lunch and PE don’t count.)
- How many autistic children and adults live with-in 2 miles of you?
- How many autistic adults have jobs?
- What is the divorce rate for parents of autistic children?
- Which scores higher on the clinical tests of depression, anxiety and stress: death of a family member, divorce, loss of job, life threating illness, or having an autistic child?
If your answers to questions 1 and 3 were: less than 4%, congratulations. You have some awareness.
The answer to 2: awareness that autism exists in any number isn’t the same a knowing autism.
Witnessing your friends, neighbors and community deal with the daily grit of autism 24/7 might compel you to move beyond awareness. And here’s another fun autism fact: New Jersey now has a 1 in 45 autism rate. The national number: 1 in 68.
The answer to #4: Over 90%
The answer to #5: having an autistic child.
Maybe now you can understand my ‘NOT THIS’ epiphany several years ago. Whatever the ‘this’ of autism encompassed, I was leaving it.
And EFF awareness.
There was no way leaving the road to internment could be worse than internment of my child.
I investigated; I studied and studied some more. I turned over every stone, researched every program and then did it some more. Yet I still couldn’t find ‘yes this’. Only ‘not this.’
I finally had the courage to say ‘not this’ out loud 3 year ago. It created a tsunami in my life. Rearranging every endeavor and every facet of self, family and work.
I’ve been traveling the road of ‘not this’ for 3 years. Refueling on the support and kindness of like-minded parents at Ability 2 Work, cheerleaders and community supporters.
It’s a book to be sure—but there is a joyful life well under construction:
I founded and I am CEO of Ability 2 Work. We are a 501 c3. We operate Grateful Bites (formerly Baker’s Treat). We provide the social, emotional, conceptual, cognitive and behavioral support for those who are differently-abled to live joyful, healthy, meaningful lives.
Parents come into ‘boot-camp’ when a child joins Ability 2 Work. We teach parents to convert from parent mode to co-therapist mode—and their lives phenomenally change.
We do it without ANY taxpayer money. We do it without the internment system (as it would prevent us from doing most of what we do with it’s limitations). We accomplish it through the blessings of donations and volunteers. We do it through revolutionized staff training and most importantly community support.
We reach out to other employers and teach them it’s easier than they think to be a supportive employer just like Grateful Bites. We teach skills that can be generalized to other types of jobs to keep the system of internment out of the lives of our children.
And then there are the miracles of each differently-abled apprentice at Grateful Bites, unscripted, born of the alchemy of ‘not this’ and divine grace. If you watch our Facebook page you see them posted, but here are just 3 of them:
For M: severe sensory issues cause very poor diet with lack of food choices, child is morbidly obese, unhappy, unhealthy, unable to stand for more than 10 minutes and unable to realize potential latent within. Today: working 5 hours a day, 80lbs lighter, loving all kinds of healthy foods and is gushing with inevitable pride and joy of a meaningful life. He is joyfully integrated into his family and extended family in ways never before experienced. The parents recently shared, “we were in the car driving home and M asked us, “how was your day?” We looked at each other not knowing where this was going but answered. M responded with follow-up questions and then shared how his day was. We were tickled pink with the realization we were having adult conversation! We had to contain our excitement on the frontier of ‘conversation’, which we had never before experienced and we didn’t want to interrupt it!” Expressing the joy and hope of another sign of authentic M, mom and dad were profoundly moved by the realization: not in their wildest dreams did they think this was possible. Ever.
For K: Behaviors so severe he was kicked out of previous placements, his intelligence unknown and underexplored. His ability to focus was almost non-existent giving rise to the popular stereotype that autistic individuals are ‘in their own world’ and can never be, ‘in the real world.’
Today K is off medications, fully attending task and job, joyfully social and brimming with pride at all accomplishments. A new family dynamic has emerged of sharing and togetherness. K is experiencing the growth and dynamic of social interactions and his intelligence is front and center of his possibilities today. He hasn’t had a single aggressive behavior in months.
For Z: Frustrated, unable to communicate that frustration other than aggressive outbursts that could last for days, which only served to make him feel worse surveying the wake of collateral damage: be it gushing wound on my face or a broken wrist or the broken favorite toy. Curious about the world but unable to approach it; he was defensive to any stimulus, including air on his skin; in a living hell simultaneously repulsed by the world he orbited but so desperately wanted to land on.
Today, greeting co-workers, giving hugs and high-five’s is the norm. “Do you have a job for me? How can I help? And Please help me” are all regular parts of Z vocabulary.
Two months ago, unbidden, unprompted, alone with me in the kitchen while gazing into the refrigerator came, “I love you mom.”
I cried tears of joy when the words registered. Tears of relief at the simplicity of the typical tween moment. I was elated the abyss of autism between my son and I finally had a bridge and we were walking across it. I hugged him for as long as he would let me and then I kissed him, which he received as best his emotional tween maturity could. He patted me on the back handed me a paper towel for my tears and went upstairs. Finally it wasn’t my imagination, 23 years of ‘almosting’ vanished with a single “I love you mom.”
I love you is the hearts way of singing out loud.
“Awareness” isn’t the sheet music for the song. “Awareness” doesn’t bring miracles.
Miracles arise by joining the heart breaking moments of autistic life, supporting it, enduring it, and supporting it until the miracle arrives. Even if it’s 23 years in the making.
I invite you on the journey without distance: From your head to your heart. Your head knows about awareness, but it is your heart that must endure it.
Hearts singing out loud, together as the work commences are the sheet music for miracles to arise.
Convert your awareness into action. Make your pledge to volunteer or donate today and walk with us while we support miracles.
Ability 2 Work CEO