By Sue Swezey
[Note: The author was one of the first autism moms in the Bay Area, and is one of the founders of SFASA. Her son John is now 54 years old. Learn more about them in her blog post "When Autism Moms Age Out."]
[Note: The author was one of the first autism moms in the Bay Area, and is one of the founders of SFASA. Her son John is now 54 years old. Learn more about them in her blog post "When Autism Moms Age Out."]
In a recent newsletter, SFASA president Jill Escher wrote candidly and with wry understatement that "Mortality Is a Bummer for Autism Parents." She cites the services that will be desperately needed to care for our children when we are gone. But even before that time, our families may be faced with major life changes. How will our children cope with a death in the family – and how will we?
I never wanted to grow up to be a single mom, much less the single mom of a child with autism. Yet here I was, waiting for my then-44-year-old son John to come home from his program so I could tell him his dad had died the night before. John wasn’t prepared, and neither was I.
I never wanted to grow up to be a single mom, much less the single mom of a child with autism. Yet here I was, waiting for my then-44-year-old son John to come home from his program so I could tell him his dad had died the night before. John wasn’t prepared, and neither was I.
John and his dad. It was not as if the event had come out of the blue. There had been a long hospital stay, with good doctors and reasonably good care. But there were also weird moments of déjà vû: unreturned phone calls, clueless aides, unanswered questions, ego clashes between professionals, turf wars between agencies (in this case, our clinic and the hospital). Why was it all so oddly familiar? And then the realization struck: I was an Autism Mom! I had faced IEP’s and IPP’s, Regional Centers and School Districts, DDS and Special Ed. Thanks to my Autism experience, I had a head start over bewildered families confronting bureaucracy for the first time. I was a survivor and didn’t know it.
John’s reactions were puzzling during that long summer while his dad was ailing. He had been hospitalized occasionally but had always come home and recovered. This time, on the very first night when things still seemed to be going well, John had a total, startling meltdown. It was as if he instantly grasped what was wrong, long before anyone else—including the physicians. From that moment on he sat quietly through many hospital visits, doing puzzles or simply watching things get worse.
John’s reactions were puzzling during that long summer while his dad was ailing. He had been hospitalized occasionally but had always come home and recovered. This time, on the very first night when things still seemed to be going well, John had a total, startling meltdown. It was as if he instantly grasped what was wrong, long before anyone else—including the physicians. From that moment on he sat quietly through many hospital visits, doing puzzles or simply watching things get worse.
John's drawing of family members in heaven.
So now here he was, arriving home and anxious to see Dad. What to say? I had asked his program for ideas, and they suggested that some clients had been told about heaven. We were not churchgoers—in fact, one school psychologist insisted that lack of Sunday School attendance had caused John’s lack of social skills(!). Heaven seemed way too abstract, but I was desperate; I had to make it sound like a real place. We plunged into a social story in which we could not visit Dad because he had just died and gone to heaven, no time to say goodbye. Heaven was far far away, above the sky. We couldn’t go see Dad because United Airlines did not fly there. Dad was with the grandparents and assorted relatives, as well as our last cat and an ill-fated rabbit. Since his wardrobe was still in the closet, Dad was wearing new clothes in heaven. John added that Dad threw his hospital pajamas in the garbage can, a line that brought a faint smile.
John's drawing of his dad throwing away his hospital gown. We then set out to illustrate the narrative. I asked John to draw the two of us, and he created two smiling, waving figures, the only way he knows to draw people. He then produced a curious rectangle above our heads, vaguely resembling a concrete beam; when I asked what it was, he replied, “Bridge to heaven” (surely a new theological concept). On top of the beam were Dad, the relatives, and the cat (no room for the rabbit), all but the cat smiling and waving. A disembodied hand hovered over a large garbage can. The story and pictures have been repeated over and over, aloud and in writing, though the frequency is finally starting to diminish.
During that difficult period John received a tremendous amount of support from his day program, both from staff who had known him a long time and, in their own ways, from his peers. It felt like having a large, warm extended family, for which I was extremely grateful. As time has gone on, John has re-lived the sequence of events very vividly, like annually replaying a video. He still misses his Dad, especially on holidays, but I believe he has gotten used to the new norm. Some say that people with autism do not have typical feelings, but I disagree; the feelings are certainly there, but as with all things verbal they may be harder to explain or express.
During that difficult period John received a tremendous amount of support from his day program, both from staff who had known him a long time and, in their own ways, from his peers. It felt like having a large, warm extended family, for which I was extremely grateful. As time has gone on, John has re-lived the sequence of events very vividly, like annually replaying a video. He still misses his Dad, especially on holidays, but I believe he has gotten used to the new norm. Some say that people with autism do not have typical feelings, but I disagree; the feelings are certainly there, but as with all things verbal they may be harder to explain or express.
"Some say that people with autism do not have typical feelings, but I disagree; the feelings are certainly there, but as with all things verbal they may be harder to explain or express."
For both of us, as for other survivors, time has brought change and acceptance. Even John is learning to accept a new and surprising person in our lives.
Can a senior citizen single autism mom find love?
Can a single Autism Mom find romance after 50? OK, so I’m a lot older than 50, but you get the idea. When my husband died, I anticipated a sparse social life. I was not interested in pursuing another man. I could not imagine any man being attracted to a woman of seventy-something who still had to get a sitter for every outing. Nor could I picture inviting a man to my home, where John zealously guards his routines and belongings.
As things turned out, I was wrong. Quite miraculously, Mr. Wonderful appeared. He and his wife were former neighbors and close friends. Our spouses had died unexpectedly within a year of each other, and we connected at a 600-mile distance for mutual support. Far from sweeping us away, however, the ensuing courtship was a total surprise, and for some time we behaved more like awkward eighth graders than swinging seniors.
That was eight years ago, and today we are an Item. John has inspected the newcomer and has finally bestowed a shy smile and a hug, an unusual display of affection. Mr. W and I have had many amusing moments arranging our lives around John, and we don’t yet know how our lifestyles will mesh. But for now, we share the remarkable gift of a new, and wonderful, beginning. Such things can happen—even in the world of autism.
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