We have heard many reports in the past year about the spread of the Zika virus and the extreme brain damage it can cause to unborn children, but it can be difficult to understand what that means for families. As a woman who has mothered such a child for the past 53 years, let me share some of the difficulties as well as the joys of parenting a child with microcephaly.
In my son’s case, microcephaly was caused by unknown factors in the first trimester of pregnancy. Andy cannot speak, and although we have tried many times, he cannot use any communication devices. He did not walk until he was 10. He has never learned to read or write or to do any math, he has never held a job and he needs 24-hour supervision to keep him safe.
He knows his name, and he recognizes his home, siblings, parents, friends and staff members at his group home and his day program. He is cooperative with dressing and bathing, feeds himself and is toilet trained.
He is an extremely happy person and he makes a lot of happy noises, even laughing out loud, infectiously at times. He likes music, toys that make noise, therapeutic riding and going anywhere in a car. He definitely likes to hold hands and is a great hugger. He never has an angry day, and his pleasant personality can light up a room. While he doesn’t make the usual contributions to society through employment, marriage or volunteering, I consider his presence a gift. Not all people with microcephaly are as impaired as he, but I am speaking from my own experience.
At his birth in 1963, the expectations for children such as Andy were very different from today. Those with intellectual and developmental disabilities were warehoused in institutions, usually in rural areas, out of sight and out of mind.
Andy was my third child. At age 2 months, my husband and I took him to Philadelphia Children’s Hospital — we were living in Harrisburg — at the urging of our pediatrician, who was concerned about his head size. A doctor at the hospital identified his condition as microcephaly and predicted that he would never walk or talk. Because I had two older children, he advised institutionalization for Andy and said we should do it quickly, before we got too attached.
It is impossible to communicate our shock at such a plan. We were already attached and rejected the idea immediately. Fortunately, John F. Kennedy was president, and his sister Rosemary’s mental retardation (to use the terminology of the time) led him to several breakthrough policies. After his inauguration, Kennedy created a panel of scientists, doctors and others to develop a plan of action.
In a message to Congress in 1963, using the panel’s report as a blueprint, he outlined a new approach to intellectual disabilities. It included programs for maternity care, initiatives to move away from custodial institutions and plans for research centers. Congress passed legislation enacting many of these ideas before the year was out. However it was the emphasis on special education, training and rehabilitation proposed in the report that helped us keep our son at home.
It took another 12 years for the Education for All Handicapped Children Act to establish the right to a public education for children with disabilities. During the period before public facilities were available, some private programs provided at least self-care training for children with disabilities in their communities.
Because I was a stay-at-home mom, I took care of the kids as usual. But things became harder the longer Andy didn’t walk.
Although he was small at age 10 — he weighed only 55 pounds — he was about 3½ feet tall. It was hard to pick him up, and he was too big for a stroller. He became good at scooting on his bottom from room to room. The most difficult part was getting him upstairs to go to bed. He was not toilet trained then — still in diapers before disposable diapers.
Because he had not walked at the normal age, his hip joints didn’t function properly and doctors recommended surgery. We were by then living in Maryland and able to proceed with that idea in 1974 because of a new type of institution, funded by Medicaid, which had opened in 1970. The original purpose of Great Oaks, in Prince George’s County, was to provide short institutional stays for therapy or training and return children like Andy to the community. The surgery took place, followed by recovery in leg casts for two months at home, then residence at Great Oaks for therapy for six months. The outcome was notable: He walked!
Andy’s time in Great Oaks also allowed me to go to graduate school. My older children were in high school and had adjusted pretty well to having such an impaired brother. Following his surgery, Andy attended a private day program in the District. Being able to walk meant it was easier for a babysitter to care for him after school. So I continued my studies and eventually got a job. Andy started public school in 1979, at age 16, four years after passage of the legislation giving him that right. He was admitted to Longview, one of the first schools in Montgomery County with a day program for special education. By that time, both of my older sons were in college and I worked full time to help defray their educational and other expenses.
And then we came upon the abyss. In 1984, at age 21, Andy was no longer eligible for public education, and there were no further public programs for someone with his level of impairment. I didn’t want to give up my job, and we were fortunate to find a daily caregiver.
We hoped that new programs would be developed because the climate was changing for many with intellectual disabilities. To settle a landmark lawsuit involving abuse and neglect of children and adults in 1984, Pennsylvania officials had agreed to close the Pennhurst State School and Hospital, which was completed by 1987. This started closures of state institutions around the country. We thought it was just a matter of time before programs would be developed for this population.
In 1988, I needed a hip replacement, so we enlisted Great Oaks to care for Andy again for a few months while I recovered. There were few if any group homes available, and we thought there would be no harm in a short stay. Unfortunately, Great Oaks’ original rehabilitation goals had gone by the wayside, replaced by the old institutional model. By that time, Maryland was closing its institutions, and residents of such places as Great Oaks were being given the first chance at the limited placements in group homes. Andy would be transferred to a group home and an accompanying day program when and if he was selected. We concluded that getting into such a program was worth keeping him institutionalized a little longer, so he remained there after I recovered.
While he was in Great Oaks, I would pick him up on Friday evenings as I came home from work.However, my happy boy cried every time he went back, so my husband was elected to take him back on Sundays. Six months stretched into a year. (The “talkers” and the “well-behaved” residents of Great Oaks were the first to leave the institution.) Finally in 1989, at age 26, Andy was offered a group-home placement with the Arc Montgomery County, a nonprofit parents’ organization that we had joined soon after Andy’s birth.
Since then, he has lived close by in the Rockville area, currently with four other men of varying abilities. He has lived with one of his roommates for the full 27 years he has been in a group home. We still pick him up almost every weekend, but, in deference to our age (I am 80, my husband is 83), he comes home Saturday and goes back Sunday. I make sure he toilets regularly, and I grind his food (he has developed a swallowing problem), but otherwise he entertains himself, plays with his toys, walks around the house, watches TV or takes walks with us. He is as happy to go back to his group home as he is to come to our house. As he ages, there are other health and welfare decisions to be made periodically, but for the moment he is in a very good place.
One particularly gratifying event was his attendance at our 50th anniversary party 10 years ago. He had not seen extended family for many years, and I was uncertain how they would react to him. He came with his favorite staff person from his group home. He was greeted warmly by all and he seemed to enjoy every minute of the attention. He particularly liked listening to the band.
It was good to have him participate in a family celebration, something he wasn’t always able to do as he was growing up because of the logistics (and attitudes) of the different circumstances, which meant he wasn’t always accepted. While the great majority of people with disabilities can be independent, work, get around (with accessible transportation) and enjoy social activities, those who need assistance with self-care or supervision for safety make up only about 4 percent of the country’s adult population. About 52 percent are older than 65.
A very small subgroup, which includes Andy, are without the cognitive capacity to direct their lives. We have moved many people with these serious limitations out of institutions, but we haven’t necessarily improved all of their lives. Sheltered workshops, which provided stimulating activities for Andy for years, are now being closed. This closing is best for most clients, but for some, like Andy, it means being relegated to day programs mostly populated by the elderly or, if there is no day program available, being placed in a nursing home. While I live, I won’t let that happen.
We have come a long way in treatment of those with disabilities in the 53 years of Andy’s life, but with the Zika virus, the number of people with more-severe limitations will be increasing at the earliest ages. It is time to reexamine what President Kennedy started and commit the necessary resources to helping — and including — everyone with limitations. They have a wide range of needs that don’t stop when they turn 21.
Altman, a sociologist, is retired from the National Center for Health Statistics, where she serves as a consultant on disability-statistics issues.