Autism and small victories

Lena Rivkin

“Phillip made that!” I proudly exclaimed. Then I instantly wondered who exactly I had become. A friend had come over with her 5-month-old baby. After we cooed over her baby’s latest accomplishments, I suddenly pointed to a neon pink, incredibly long legged creation with green ears, round black eyes and a glittering necktie, taped to my refrigerator door. I instantly worried aloud if I had just sounded too parental. My friend reassured me. “You’re not just Phillip’s sister. You’re his parent as well. So why not be proud of his accomplishments!” She’s right. I am proud. As an adult with severe autism, my brother Phillip doesn’t use words. He speaks with his art.

My brother and I were equally lucky in different ways to have an artist for a mother. Everything our mother did, she did with creativity and her own personal flair. Termed severely retarded at the age of three, my parents were told to expect nothing of Phillip, advised to put him in a mental hospital and to move on with their lives. Even though Phillip was born long before autism was considered common, my parents instinctively saw their son as more than just a dire diagnosis. So they did just the opposite.

My mother and father were very involved and dedicated parents. They fully immersed him in their fun and busy lives. They were proud of everything he accomplished. After I was born, my parents skillfully raised me to know that my older brother was special and he was my family.

And throughout our childhoods, as entwined and yet indelibly different as they were, our common language was creativity. I grew up to be an artist and an art educator. Phillip grew up to be his best self, free to explore his creative voice in a secure and nurturing community. Every one of Phillip’s personal victories, however small, has been lauded and loved.

As Phillip grew, our parents not only were actively shaping Phillip’s life, they were also advocates for him and other children with special needs. When it came time for our parents to seek additional outside help for Phillip they were lucky to discover New Horizons, a school and group home in North Hills, California, where Phillip could live his adult life with the utmost care and attention.

Far from being content with just that, our parents sought creative ways to raise funds and awareness for New Horizons. They vibrantly applied their creativity and volunteering spirits to help New Horizons in any way they could. They were uncommon parents for their time.

New Horizons has been instrumental in Phillip’s adult victories. Due to his excellently performed job of crossing out every day on the calendar at New Horizons, we made sure he had plenty of colored pencils to fulfill what became an obsession. My family also learned he adored receiving mail so we made an extra effort to send him postcards, it didn’t matter where from. When my parents passed away, I kept up the postcard sending. Recently, I’ve been overwhelmed by the kindness of friends who send Phillip postcards. Bierta, who lives in Japan, sent him a large box of teas and chocolates for the holidays last year as well as postcards from all her travels. Terry and Lee Gopadze inundated Phillip with postcards from their trip to Maui last year. None of these people have even met Phillip, but they richly contribute to his life.

Since art was always my passion. I received my MFA and became an exhibiting artist and art professor at a local college. Years ago a staff member at Phillip’s school helped Phillip discover his “MFA”. A teacher whose name I wish I knew taught Phillip how to needlepoint. It truly was the biggest creative victory in Phillip’s life. Phillip became a devoted needle-pointer over night.

Drawing upon her deeply creative instincts, my mother started designing and coloring Phillip’s needlepoint canvasses. Phillip’s fingers eagerly responded to our mother’s graphic designs and vibrant color choices. When our mother passed away six years ago, I took over the design and coloring of his canvasses. And now, nearly 20 years and around 100 needlepoints later, our collaborative creations have deepened and enriched our relationship, far beyond words. We also bake cupcakes together.

Phillip now also attends a wonderfully nurturing school, Tierra del Sol Foundation in Sunland, California. Through the art programs at Tierra del Sol, Phillip’s art has been exhibited and he actually received a commission for one of his paintings. So he is a working artist as well! Having my brother enveloped in two thriving environments where he can communicate with his hands and mind is one of the best victories of his life.

Recently, Gail Peters, the development officer at Tierra del Sol told me a story I never knew. Years ago a staff member sent my father a photo of Phillip smiling. My father was stunned, because he had never seen Phillip smile. He wrote a note to Gail thanking her for his son’s smile, which in turn made him smile in a way he had never smiled.

On the weekends, Ardith Green, a creative and devoted New Horizons staff member regularly brings in craft-making projects for Phillip and his housemates. Our mother would have loved Ardith for her take-charge spirit and her artistic impulses on behalf of the clients at New Horizons.

On my most recent visit with Phillip, I was instantly charmed by the witty, long-limbed neon pink man on display in the living room. When Ardith exclaimed that Phillip had made it, I was delighted. The neon pink man gave me a thrilling insight into what else lurks inside my brother’s imagination.

My parents aren’t around to enjoy what Phillip has recently created, but I’m sure they’d be exceedingly proud of everything he’s done. And they would joyfully display his creations for all the world to see. When I taped the pink man to my refrigerator, I honored my parents and their son, and furthered their belief that it is far better to celebrate what people can accomplish instead of mourning the milestones they may never meet.

Small victories are still victories.

Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

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