Having a child with autism changes your world in many ways, but one way I’ve seen my life change a great deal is in my sense of “community”. We all have a community of support: our friends, colleagues, our families. We build community and it is a dynamic and organic thing — our community — that changes as our lives and situations change.
We build relationships and sometimes they fail. Sometimes people move away or simply drift away. We lose touch with people despite our best efforts. At the best of times, people stick with us through thick and thin and we do our best. We connect, disconnect then get back again as if nothing ever happened.
I remember my mom telling me about her relationship with her best friend, Marvene. They’ve been best friends since they were young, and have remained so to this day — both of them are now nearly 80.
My mom used to tell me that no matter what happened and no matter how long it had been since they’d been in touch, they could always start up again where they “left off” — as if nothing had happened. Marvene had five kids, and my mom had three. They had jobs, busy lives, husbands, vacations. They dealt with life and death events and kept the fabric of their families and friendships intact.
I have good friends. I have supportive and loving friends who understand things about my life that I’ve never had to explain to them. But I also have what I’d call unexpected and amazing friends, who have provided me with unsolicited and unscripted support of a kind so meaningful, it’s almost too difficult to write about.
But I’m going to. And I’m going to start with one person who had a significant impact on my and Georgia’s life. Who provided me with more than she’ll ever know.
Before Georgia was even diagnosed with autism, when we thought her problems were due only to being developmentally delayed and challenged in mobility and walking, we were referred to the Sick Kids outpatient unit for physical and occupational therapy.
Barb was an occupational therapist who, I realized, was one of those people you actually could call a “Guru.” Over the four years we worked directly with her (and I do mean both Georgia and I) she taught Georgia to walk, opened her up to the world and provided a source of friendship and support for me.
It not only helped me figure out how to interact with Georgia, it simply and calmly demanded my presence “on the floor” with her.
We started working with Barb at Sick Kids in a small therapy room covered in mats with a mirror on one wall. Georgia was still a toddler and loved the mirror (of course) but didn’t love having to try moving towards it. She objected, cried, yelled and agonized but Barb persevered, always smiling calmly and reassuring us, with a firm grip around both of Georgia’s ankles as she swayed and toddled and almost took a step.
The fascinating thing for me was that Georgia appeared to be in pain and to dislike the therapy, but she loved Barb. She loved seeing Barb, and she trusted Barb – or so I imagined in the way we imagine our kids connect with the world around us as we do.
As is the way with funding for kids with disabilities, we were only allocated a small “chunk” of services which quickly ran out. I asked Barb about the possibility of private therapy, scared of what would happen if we lost all access to therapy (which was inevitable) and anxious not to lose a connection with this lovely woman. And so we started therapy at Barb’s house, two mornings a week.
I remember those few years of going to Barb’s house the way one remembers a lovely respite, or vacation. I remember her lovely living room full of sun and books and therapy toys for kids. I remember Barb’s little silver rings catching the light as she gently moved Georgia through exercises to stretch and activate weak muscles. I went there on good and bad days, on days when I was frazzled, or calm.
Sometimes I simply sat back in a comfortable chair and watched, and sometimes I drifted off to sleep, to be woken up with a kind hand and a warm laugh. Some days I talked and I cried and Barb listened and smiled. She made me tea and we talked. All the while her beautiful hands constantly moved up and down on Georgia’s legs and arms, telling her how to move without speaking to her. It was warm and safe in her living room, and being there changed our lives.
During those years, while Georgia learned to walk and engage in the world – the most important and foundational therapy she ever had – we became friends. We talked. About our children (Barb had lovely young teenage boys who would say hi to Georgia, to her extreme pleasure) and our dreams for them. About our lives, our jobs, the wine we liked to drink and the tea we preferred. About our summer trips, our anger at the funding systems, and our shared a love of silver jewelry, especially rings. She talked to me about canoeing and skiing with her boys and her husband, and about her love of the outdoors. Every session ended with a caring hand on my shoulder or a hug. A small but meaningful gesture of warmth and support.
I called Barb a few years ago to catch up and see if there was a possibility of working with her again, as Georgia, now older, had a new set of physical challenges that I recognized could be helped by Barb’s approach.
She answered the phone with that warm, welcoming voice, and we reconnected as if we had just talked the day before. But she sounded weak and tired. No, she was sad to say, she couldn’t take on any clients. She was sick. Cancer. A rare, angry kind of cancer. She told me it wasn’t good, that the cancer had spread quickly. We talked about a visit when she felt stronger, after her round of chemo. She asked about Georgia, and laughed when I told her some recent stories. I felt that same generosity of spirit coming through the phone, even on a call such as this. It was like we were in her living room again.
A few months later, Barb died. Her memorial service was on a hot summer day and I couldn’t find parking for blocks and blocks. We ended up parked just down the street from her house. Walking by her house, I saw the basketball net out front as always and the sun shining through her front window into her living room. I could almost picture her sitting there on the floor, smiling up at me and working her magic. But she wasn’t.
The reason I couldn’t find parking is because of the hundreds and hundreds of people who were attending Barb’s memorial service. Her family. Those boys, now grown into handsome young men, standing with their father looking lost, but with Barb’s strength and calm. The many, many younger therapists she had influenced. The physicians who turned to her with the most difficult cases. And so, so many parents and children whose lives she had touched and changed for the better.
A community of people brought together because of one amazing, special, once-in-a-lifetime person. Everyone seemed to want to tell their Barb story. The church, overfilled, was too hot but no one left, no one wavered, no one stayed seated. It was a remarkable testimonial for a remarkable person who never stopped wanting to change the lives of kids with special needs. Not just those kids, but their families.
I can hardly think or talk about Barb without crying, still today. I never told her just how much she means to me or how influential she was on my feelings about my own daughter and her abilities. I am sad that I never told her how she changed my life in ways that no one saw or knew, while she so deftly and confidently and quietly moved Georgia into her own way of being in the world, and helped move her forward to be the young woman she is becoming. I wish Barb were here to see it. She’d smile, laugh, and flutter those pretty little silver rings on those beautiful, magical hands.
To glimpse just a little of the impact Barb had upon the world of kid with special needs, read this story about how Barb created a ballet school for little girls with special needs who want to be ballerinas.