What can I tell you about my brother, Danny? Plenty. I can tell you his exact age, height and weight, his medications and when he takes them, his maladies, now many teeth he has, his dietary preferences, his bowel habits. I can tell you that he has, thus far in his 71 years, avoided the hearing loss and various skin cancers that plague our father’s side of our family but not the diabetes rampant in my mother’s.
What can my brother, Danny, tell you about me? Nothing. Dan has never spoken. He understands language pretty well, particularly cues – commands about what action he should proceed to do, like getting into the car, getting out of the car, washing his hands before meals, getting into bed.
Dan is autistic. When I was a child and explained Dan to others, no one had heard of autism. They thought I was saying that my brother was artistic. The easiest way to describe him was that he didn’t talk, didn’t go to school, and was retarded. “Retarded” everyone got. But retarded isn’t accurate. I think there may be ability or intelligence locked inside my brother’s brain.
Dan is fourteen months older than I am, one of the earliest baby boomers. When I developed more or less normally, certainly talking on time, our parents became concerned about Dan’s not talking. My father, perhaps both my parents, took Dan at age three to Johns Hopkins where he was seen by Dr. Leo Kanner, the famed child psychiatrist who came up with the term autism. Dr. Kanner diagnosed early infantile autism in Dan. He wrote to my physician uncle, “The child is inherently psychotic rather than congenitally feebleminded. “ Dr. Kanner went on to say that Dan would benefit from the more individual care in (private) school like Devereux or Woods…but that these schools are very expensive. Even if the family made the financial sacrifice, I am not sure that the prognostic outlook would justify the sacrifice.” He then recommended a state institution for Dan.
I looked through a file my father kept on Dan while writing this story. The correspondence in the file clarified some foggy memories and told me a lot about the challenge of raising Dan. I was there, obviously, but missed or misremembered a surprising amount.
My father was a career naval officer, so we rarely stayed in any one place more than two years. We were, I think, living in Norfolk when my parents, with the help of my paternal grandmother, enrolled Dan at the Woods School. He was five and a “resident student.” My father wrote that Dan’s progress there was slow but steady but that he appeared discontented and listless when they visited him there.
We moved to the Philadelphia suburbs and Dan attended the Devereaux School in Devon, at ages six and seven. Dad’s letter states that his progress continued to be slow and living at home with us he was happy and enjoyed the routine of going to school in the morning and returning home in the afternoon.
What I remember hearing about Dan’s experiences at these two expensive private schools is that Dan was toilet trained and learned beautiful table manners.
When Dan was seven we moved again to the Harrisburg suburbs and Dan was enrolled in a school for the mentally retarded as a day student. This was the last school Dan attended. There weren’t educational opportunities for people like Dan in St. Mary’s County, MD, or Long Island or Oahu, our next homes.
I have several vivid memories of Dan in Hollywood Shores, MD. We rented a very large house close to some tributary of the Patuxent River. The owner must have left some furnishings in the house. He had certainly left a library full of books. We discovered that Dan, who of course couldn’t read, would know if any of the books in the library were disturbed. If a book were moved to another location, or put in upside down when he was gone from the room, he would put it back in its original place and orientation when he came into the room.
Another mysterious thing he did was locate and place a can of tuna and one of cream of mushroom soup on the kitchen counter every Friday. Those were the days Catholics abstained from meat on Fridays and we kids had tuna and noodles for dinner. But how he knew when Fridays rolled around was unfathomable to us.
A common sight was Dan twirling and staring at a bent hair pin. And I remember he would bite his wrists when he was upset. He has scars on his wrists from that behavior.
The most embarrassing moment in my entire life involved Dan. Dan looked like a normal boy and while to the close observer his twirling bent hair pins or looking off in the distance, or his facial expression marked him as different, it wasn’t all that obvious. But one summer day, Dan went missing. My mother was either pregnant with my sister or perhaps busy taking care of her. I was ten and Dan eleven. I had to go find Dan and bring him home. There was a community pool and picnic tables not far from where we lived. I found Dan sitting with a bewildered family and eating their fried chicken. I don’t know how I explained Dan to them –I’m sure I didn’t tell them he was autistic. I must have explained his actions by saying he was retarded. As I write this I still feel the embarrassment.
When my sister was born, my father was in Argentia, Newfoundland, flying “the barrier”, the defense early warning system that might have given Washington a twenty-minute warning of a nuclear attack. My grandmother came down to stay with us while Mom was in the hospital. It was Easter weekend and we had colored Easter eggs. Dan decided he would stomp the eggs into the carpet. I remember my grandmother cleaning up the mess with amazing good cheer.
When we lived on Long Island, my father must have arranged for Dan to receive the sacraments of Holy Communion and Confirmation. I was confirmed at the same time, with my class at St. Barnabas School. Dan’s confirmation was off to the side.
Dan’s early adolescence coincided with the only time we lived in Navy housing. We were on the western edge of Pearl Harbor in a house that was, for us, a little too close to other houses. That made for some awkward moments as Dan took to running outside naked which frightened some of our neighbors. He also took a strange dislike to my father’s power saw. Every opportunity he got, he would chuck it into the common area behind our house. Another quirk involved the first dishwasher we owned. It was a portable job that you rolled over to the sink and attached a hose to. Dan would find a knife and slit the hose, causing a geyser in the kitchen. He also developed the habit of slashing silk lampshades, which also happened a few years ago at our house in Sperryville. It was amazing how Dan could find a moment when no one was aware to do these things.
One day my mother was having guests for dinner. She put Dan in the bathtub beforehand with the water running and went off to get ready for our company. When she remembered the running water and Dan, she raced to the bathroom to find the tub spilling over and the bathroom flooded. As I remember, she laughed about it.
It was during our last year in Hawaii that my parents decided that Dan could no longer live with us. Dan had begun some self-destructive behaviors like chewing glass. And he was at a size that my mother couldn’t control him. Letters from my aunt showed that our family back in Pennsylvania were concerned about the situation, particularly my mother’s emotional state.
In reading the correspondence in my father’s file, I realize my parents pursued a number of options for Dan. There are letters to St. Elizabeth’s in Washington, DC, Hillcrest Children’s Center in D.C. They enlisted Catholic Charities of the Diocese of Harrisburg. They looked for a military facility. The process must have been complicated and discouraging – especially from some six thousand miles away. Finally, they zeroed in on a Pennsylvania state institution. But that was no slam dunk – there was a long waiting list.
Dan first traveled back east – unaccompanied, and on a military aircraft, in May of 1962, about a month before we left for Philadelphia, where my father would be next stationed. He lived at the Clifford Nursing Home in Exton for two years, and then moved to Selinsgrove State School and Hospital in Selinsgrove, Pennsylvania.
While he was in the nursing home, we took him out for visits. I remember two things – that in the weeks since he flew from Hawaii and we had seen him, he lost most of the hair on his head and he lost a lot of weight. It was at this time that he started wiggling – and eventually losing – his teeth. I remember also that we took him to an ice cream shop where he bolted behind the counter and stuck his finger in several vats of ice cream. This was a quirk he had developed in Hawaii.
He has lived at Selinsgrove Center since 1964. For the past twenty-two years, since my mother’s death, he has made frequent visits home – to my father’s or sister’s house in the Philadelphia suburbs, or to our home in Sperryville. Before the home visits started, as I remember, it was thought that they would disrupt Dan’s routine and weren’t advisable. Or it could have been that home visits were too emotionally trying for my mother. In any case, for the first thirty-one years Dan was at Selinsgrove, the family saw him only twice a year or so. It was easy to go about life and forget about Dan.
I almost never visited Dan. I was very uncomfortable being around people who were so different. The question why was I a normal, functioning person while they were so impaired was always on my mind. And I thought Dan was more my parents’ problem than mine.
Selinsgrove Center is a beautiful campus of perhaps one-hundred acres in the mountains just outside the cute town of Selinsgrove. There are cottages – one I remember was called Applewood – dotted around the mountain and a huge Central building just off of the entrance. For most of his time there, Dan lived in the cottages. He moved between them, because he was moved from group to group or because a house was under renovation. Perhaps ten years ago he and his group had to move from their cottage ostensibly to renovate the cottage. As it turned out, all of the residents were being moved to Central Building permanently. The declining enrolment made it more convenient and cheaper to house them all together.
Twenty or thirty years ago, a court case in Philadelphia found that state institution patients’ rights were violated and that many residents should live in the community in group homes. Many did and the number of Pennsylvania institutions has shrunk. Thankfully, Selinsgrove remains open. My father, who was Dan’s guardian until his death three years ago, felt strongly that Dan was better off in Selinsgrove than he would have been in a group home. Dan has the workshop, medical and dental care, Special Olympics, a pool, many social activities, and staff that has known him for a long time. So, Dad, and now my sister and I, Dan’s successor guardians, have emphasized that we want Dan to remain at Selinsgrove.
I wasn’t involved with Dan’s care until twenty-two years ago, but I believe that Selinsgrove is a good home for Dan and that it is a better place than it probably was in the earlier years that Dan was there. I think there is more of a spotlight on the care given the residents. Every year there is a review of Dan’s situation, medical, psychological, social, dietary, and spiritual, to which ten or fifteen people involved with his care attend. I’ve been to most of these reviews in the last two decades. Family members, particularly those who are guardians, have a lot of clout at reviews.
When Dan come to visit us, two staff members will drive him to State Line, Pennsylvania, the closest point in Pennsylvania to us, about a two-hour trip up Interstate 81. (The rules limit the caretakers to staying within Pennsylvania.) We have lunch and I hear about what is happening at the Center and how Dan has been doing. Dan stays with us about a week. The first thing Fred and I do upon arriving home is sort his medications in a weekly pill organizer. Not that Dan is unhealthy – he is amazingly healthy and looks, I think, younger than his almost 71 years. His skin is remarkably clear of age spots and wrinkles, probably because he is not outside as much as the rest of us and when he is, the people who care for him slather him with sun block. They get in trouble if they don’t.
Dan knows me, he knows Fred, he knows our house but he makes no sign of recognition. He doesn’t appear particularly happy to be with us and the animals seem to annoy him more than anything else. He likes the meals and snacks I prepare, with one exception – he won’t touch sunny side up eggs. He eats way too fast, so I give him small portions and then refill his plate and we cue him to eat slower.
Cueing Dan to do things I know he knows to do drives me crazy. Dan waits to be told to do many things – exit the car, open the door, sit down at the table, start eating, get into bed. Sometimes, if it’s something I know Dan wants to do, like eating a meal, I’ll deliberately not cue him to start. After we’ve begun eating, Dan will eventually start.
Keeping Dan occupied takes work on our part. We walk with him every day. The Rappahannock track is ideal because Dan can walk at his own pace, which is slightly slower than ours, and we can keep an eye on him. He stays in the same lane but is no respecter of other walkers or runners’ personal space so that can make for some interesting situations.
I have, on occasion, tried to get Dan to perform some chore that I wanted done, like picking up acorns or leaves. Continually telling him to do something was so much work for me, I gave up. He will carry his dishes and silverware to the sink and gently place them there. We have busy work for him – making lego “cities”, doing puzzles, putting beads on plastic forms. He loves going to the workshop at Selinsgrove where he assembles simple objects. He receives wages for his work in the workshop and received a second place award for best worker. We think he misses the workshop when he’s with us. Our legos and beads just aren’t the same, it seems.
Dan likes rocking and can spend hours in the rocking chairs on our front porch and family room. We have a terrific view of the mountains from the front porch, but he seldom looks at the view. He also likes laying in our hammocks.
One of his best caretakers says that he likes Alvin and the Chipmonks movies. I’ve taken him to a Chipmonk movie and I’ve bought three or four on DVD. I certainly couldn’t tell that he enjoys watching them or anything else.
Several years ago we bought him an iPad and I added apps for autistic children. One I was really hoping he would use is the “yes” “no” app, where you touch the green “yes” or the red “no” and a voice speaks those words. I hoped that this might be a way to communicate. The staff at Selinsgrove spent time working on the yes no app. So far Dan hits yes or no at random and without looking at the iPad. It’s frustrating for me.
Dan is very good at church and mimics our actions. When we kneel, he kneels. When we sit, he sits. When we stand, he stands. He goes up with us to communion and receives it by mouth, though keeping him in the communion line is a job.
I clean Dan after he’s used the toilet and I bathe him each morning. Dan goes through the motions of washing himself but he doesn’t seem to get the idea. Actually, that brings up the bigger question.
What doesn’t Dan understand and what does Dan not do because he doesn’t want to. There’s no way of telling but it’s sometimes easy to think Dan is plotting not to do some basic thing like dry his legs because he’s trying to drive me crazy.
We chuckle about one incident. About ten years ago we had an addition added to our house and a fancy faucet installed in the new kitchen sink. When we tried to use it,neither Fred or I could get it to work. We were annoyed at the contractor for failing to connect the faucet to the house water. Dan came in, pulled the lever the correct way right away and had the water running.
Dan is a favorite of his Selinsgrove caretakers, which is a bit of a mystery to us because Dan shows no emotion around others. We suspect it’s because Dan is fairly easy to care for, unlike some of his fellow residents. And we find Dan fairly easy to care for, too, but we always remember the scary incidents, like when he was driving with my father in the passenger seat on the Pennsylvania turnpike and Dan opened the door and threw the turnpike ticket out. Or the time he jumped from one pew to another at mass. Or the times he’s knocked Fred and me over on his way to the bathroom. He has a periodic obsessive need to hurry back and forth to sit on the toilet. I used to try to curb this routine but have pretty much given up.
Dan has always been a puzzle. Why was he born with autism? Dr. Kanner’s theory about autism was that poor mothering by cold, well-educated women was to blame, though my parents never bought into that, thank God. My mother wondered if the hot baths she took before she knew she was pregnant were to blame. My father had just come back from Philippines, where he’d been flying anti-submarine planes. Perhaps some environmental contaminant affected his sperm. Our father’s side of the family has some odd folks and many, many engineers, whom our enginner son-in-law thinks are overrepresented in the autistic population. Could Dan’s autism have been a genetic thing? There is a research program called SPARK that requested Dan’s saliva to see if they could locate an autism gene so we may learn more about the genetic cause at some point.
Another question – if Dan had had more schooling such as what is available to mentally and emotionally challenged children now, would that have made a difference. My guess is that it wouldn’t.
And – how much of Dan’s behaviors now did he acquire from his fifty-three years in an institution? His rapid eating, which is a choking hazzared, for example. Who knows.
I also wonder if I was affected , particularly when I was a baby and toddler, by my brother’s oddities.
Looking through my father’s file showed me my parents’ ordeal in a different light. I just wasn’t aware – or it didn’t sink in – how difficult having Dan was until I read my father’s voluminous correspondence.
Since my father’s death, I have been thinking about what an odd inheritance Dan has been for my sister and me. We now have to make so many decisions about his welfare. I handle his finances – he receives social security and a survivor’s annuity from my father’s naval service – and have to pay Pennsylvania nearly all of it every month. I have to file his tax returns and report to the Social Security Administration. I have to spend down his bank balance and try to think of items he might actually need or want, which is tough. It’s all work. If Dan appeared to appreciate any of it even a smidgen, it might be a little easier. But he doesn’t.
One legacy that I have to remind myself of is that Dan has fostered an empathy in me and our family that might not have existed otherwise.