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While so many parents around me are grappling with what June means to them — dreading the end of the elementary school routine, welcoming the return of a college student — I usually find myself with a different, rusty kind of ache. You'd think by now I would be better at doing June. But I am an autism mom, and some pretty rough emotions herald this time of year. June has been a lot more about envy for what other parents of normal children go through, and not about the joyful anticipation of the next chapter in my son's life.
In my world, when a child leaves school at the age of 22, he also leaves behind the supports and services he — and we — have come to count on. Most people on the autism spectrum finish school and move back in with their aging parents; only 13 percent receive the residential services they need. Because Nat is severe enough on the autism spectrum that he qualifies for such support, he was one of them. (Even though "severe" is the last word I use to describe my sunny, joyful son.) In that regard, Nat is one of the "lucky" ones. And so he went to live in a group home when he graduated more than two years ago. That living situation was the best thing we could come up with. It meant Nat would be living away from home: good for him, good for us. It also meant stability for him. Even so, it felt bittersweet for me. Every time I dropped him off, I would try to feel happy. Somehow, though, I felt like I was giving up on him.
Every time I dropped him off [at the group home], I would try to feel happy. Somehow, though, I felt like I was giving up on him.
Lucky or not, the group home thing made me sad. I have always seen Nat's life in a duality: the life he has, and the so-called “normal” life he could have. While I have accepted that this parallel life is not meant to be — Nat’s needs are too intense – I still feel that vague ache, that pang that says, “You’re letting him down.” And I could not stop wondering: Will he ever be able to have something of a normal life?
Just as strong green seedlings have a way of bursting through the hardest surface, my hope would not die. With the supports in the group home, Nat grew. He was doing great in his adult life. He had a part-time job at a Shaw’s supermarket, and he volunteered at Meals on Wheels.
Seeing his wonderful progress got me thinking that maybe he could stretch beyond the group home. Maybe, at last, he was ready for less, but could have so much more: a real life, living in the community. My dream for him.
I wanted this so much, I thought of little else for months. But another challenge loomed: finding a caregiver. The qualified caregiver shortage in this country is dire. Staff turnover is about 50 percent, according to The Current State of Services for Autism, developed by Dr. Peter Gerhardt and the Organization for Autism Research in 2009.
But sometimes, the heavens part. To my surprise and delight, someone stepped forward, someone who had been in our lives for years: John, who had once been manager of Nat’s group home, told us he wanted the job.
I have always seen Nat's life in a duality: the life he has, and the so-called “normal” life he <em>could</em> have.
We kept moving ahead, not letting in the doubt. John, Nat and I found a tiny but okay apartment in the student neighborhoods of Boston University.
On June 1, along with, it seemed, half the 20-somethings of Boston, we backed up a U-Haul full of junky old furniture to Nat’s new address. Pretty young women walked by checking their phones, their flip-flops smacking the sidewalk. There was a laundromat on the corner, and a pizza place. This was a real neighborhood, full of all kinds of places to go and people for Nat to meet. It was scary, exciting, sweet, challenging.
On the sweaty third floor, John set up Nat’s new home while my son, lounging in the stained armchair, wore a grin that was ridiculously wide, giddy.
It was time for me to leave. I kissed his bristly cheek and gathered up my handbag. Just like any other mom in June, I didn’t know what was to come. I didn’t know if this would work. But as I walked down the stairs to my car, I realized that for the first time in two years — maybe in 22 years — the only thing I wasn't feeling was regret.
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