Almost Heaven
Oct 05, 2023
Today, as I walked along our country road with Joaquin, as I do most days, I was reminded of this article I wrote for AwareNow Magazine a couple years ago. Joaquin continues to thrive in an environment that feeds his soul. As we begin another year in this journey of self-determination and inclusion, I find myself ever-present to, and thankful for, wide open spaces, fresh air, mud puddles, oak trees, croaking frogs, soaring hawks, and the angels in our lives who have helped make this dream a reality.
"Almost Heaven"
Originally published in AwareNow Magazine, Issue 18, The Outside Edition in July 2021
John Denver’s “Country Roads” may hold deep meaning for many people, but for my brother and me, it symbolizes a childhood bond, the comforts of nature, a triumphant exodus from institutionalization, and return to home and family.
At a time when autism was considered a rare childhood disorder, and was thought to be the result of a “refrigerator mother,” my parents did everything they could do to be good parents to Joaquin. There was no internet or Facebook support group to turn to. So they teetered between bewilderment and exhaustion, and extraordinary creativity and affection. For years, Mom and Dad slept with one eye open; had several varieties of locks on each door of the house that lead to the outside world; mortgaged their house to buy him a swimming pool; and showered Joaquin with love and laughter.
Due to public stares and intolerance, there weren’t many places our family could go for entertainment. We sometimes dared to test our luck at McDonald’s PlayLand. Depending on who else was there, we might all enjoy an evening of fine dining. And we always had success throwing on our footie pajamas, throwing our blankets and pillows into the back of our station wagon, and taking Dad’s homemade buttered popcorn in a brown paper bag to the drive-in movie theater. Joaquin was always down for a ride in the car, and for rolling himself up into a tight blanket like a rolled taco.
Although drive-in movies were a close runner up, the all-time favorite, and the safest bet in entertainment for our family was a drive to the country. Joaquin, who was perpetually wound up and in motion, could unwind there. On weekends, we’d drive miles and miles out of our suburban neighborhood, and onto winding dirt roads lined with aged oak trees, brush, and wildflowers. We’d venture into ranches where barbed wire fences were the only barriers between us and herds of cattle. Mom packed sandwiches, potato salad, fruit, and drinks in a large cooler. We had everything we needed and nowhere else that we had to be. We just let the spirit move us from one spot to the next. We flowed with nature, and with Joaquin’s bliss. Whatever brought him joy brought us joy.
On these rural adventures, Joaquin could breathe out all his anxieties founded in the energies of societal gawkers and judgers. And he could breathe in complete freedom and peace. He could breathe out tornados of pent-up emotion, and breathe in fresh springs of self-love. Joaquin could be Joaquin. Pure Joaquin energy, one with nature.
People have sometimes asked me if I thought it was the smells or sights or sounds of the country that Joaquin found mesmerizing. And maybe he did love any one or all of those features. But I think the spatial and personal freedom he experienced there was his “almost heaven.” When out in the country, he wasn’t subject to abuse where the sole “educational” goal was control. On those country roads, Joaquin didn’t have to worry about being squirted in the face with a water bottle at school for not being focused on tasks. He didn’t have to endure vinegar being squirted into his mouth if he tried to bite in retaliation for their abuse. He didn’t have to fight against the time out room or the physical restraints that turned his bright smile into contorted cries of rage.
In the country, Joaquin could communicate with the wind, and the wind would respond gently, lovingly, to his every whim. He could share his babbled stories with the sun, and it would warm him with reassurance that he was worthy of that warmth. He could chirp in unison with the birds, spread open his wings, and let his soul soar to a place where he belonged.
When Joaquin felt loved, appreciated, and free, he could relax. Everyone in the family could relax.
At home, Mom mostly played flamenco records and Dad played oldies but goodies from the 1950’s. But in elementary school, one of my teachers played the guitar and taught our class to sing “Country Roads.” I learned the lyrics in one day. And for years, each night at bedtime, I sang Joaquin to sleep with that song.
Fast forward to 17 years old, 6 feet tall, and 200 pounds of rage. Joaquin was forced by his “special” school to take psychotropic medications to control HIS behaviors. He had severe allergic reactions to those medications, causing extreme aggression, and rendering him and our family hostage to a system not equipped for, nor interested in, humanely supporting behavioral crises. Joaquin was taken to a state institution 2 hours away from home, where human degradation was also the norm.
Our family was devasted and in mourning over this great loss. However, every weekend, we took that 2-hour drive to the institution and back, to visit Joaquin, and take him out to be with nature. For 15 years, we did this.
We promised Joaquin that we would take him home again. And this time, we would protect him. He would never again be subject to restraint, seclusion, and abuse. We would create a place where he belonged, built around his strengths, wants, and needs. And we knew, it had to be on a country road.
After 3 years in court, we finally won our case. This year marks the 10 year anniversary of Joaquin living in his own home at the end of our beautiful and peaceful dirt road, where the breeze embraces his every whim, the sun warms his heart, and the birds greet him each morning. Almost heaven.
**Joaquin lives in his own home with 24-hour support staff. His supported living agency, Lifeworks, and the individuals it employs to serve Joaquin, have remained committed and faithful to Joaquin's dream of living in a place of his choosing, near his family.
They are angels in our "almost heaven."
To book a keynote presentation on Joaquin and Diana's powerful journey to inclusion, simply email: [email protected]
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To learn about Joaquin's journey from institutionalization to community living, watch Diana's TEDx Talk here. Or listen to her podcast interview on the Think Inclusive Podcast here. Diana is an educator, speaker, author, and podcast host of Beyond Awareness: Disability Awareness That Matters.
For Diana's free resource for educators, The 5 Keys to Going Beyond Awareness, click here.
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