By: Mary and Vance Salter
Neither of us will ever forget the moment. We were both 41, and knew that there was a higher possibility that our fourth pregnancy would be more problematic than our first three. After all, children of older couples are more likely to have birth defects. But those were vague, undefined fears, like sharks at the beach, or lightning while hiking. We rejected pre-natal testing, because neither of us would reject a gift – a surprise gift! – from the very One who made both of us and our first three beautiful children.
Still, it was a shock when, after what seemed a normal labor and delivery, the neo-natal specialist told us our baby James possibly, maybe, had Down syndrome. Mary, a former nurse, knew what that meant. Vance, a lawyer, didn't, so he started reading anything and everything he could find. Three number 21 chromosomes instead of the usual two. Dr. James Langdon Down, 19th Century. Mental retardation. "Mongolian idiots," in unenlightened times.
And Jimmy's heart had septal defects that threatened his life. He couldn't nurse and he couldn't gain weight. Emergency rooms. Specialists. Ultimately, open heart surgery, at under four months of age.
But he was a baby. A dear, sweet, dependent baby. With blue eyes and flyaway hair. He was, in short, our child.
Two dacron patches, implanted during the heart surgery, reversed Jimmy's "failure to thrive" and congestive heart failure. He gained weight, and the pink came back into his cheeks. We slept again, and at home instead of at the hospital.
Our older children – then 19, 17, and 11 – helped us and helped Jimmy. The Labrador Retriever couldn't tell the difference, and accepted baby Jimmy as another member of the household. The grandparents insisted the doctors were mistaken, "There's nothing wrong with that child." And of course they were right. There is nothing more wrong with Jimmy than there is with any of us. Some of us on Earth lack a conscience; Jimmy lacks a "normal" IQ.
From the outset, we want to say that Jimmy presents us with the greatest challenges of our 32 years of parenting. The tantrums and "NO-s" of his "terrible twos" lasted from age 3 – 8, and "Jimmy, follow directions!" is still our most frequent exhortation to him. We find it difficult to cope when his public behaviors are not acceptable to us, or for that matter, to society in general. It is hard to get used to the blank, curious, or even hostile stares we sometimes get when we are out with Jim. It's hard for him, too. He is 12 years old chronologically, but emotionally and developmentally he is, as the psychologists tell us, between five and eight years old. But our discouragement fades when he flings open the front door and hollers, "I'm baaacckk," with enormous enthusiasm for whatever is next on his agenda.
We often hear people say of persons with Down syndrome, "They're so sweet," or "loving," or "docile." We hasten to say those are stereotypes which do not often apply to our guy. "Joyful," "strong-willed," "proud," "energetic," "independent," "imaginative," – yes, those adjectives describe our Jimmy. But, like many 12-year-olds without Down syndrome, he is not a poster-child for good behavior. In short, he challenges his parents mightily, on a daily basis!
That said, we feel we can truthfully brag about him. Jimmy is an excellent swimmer and has earned his yellow belt in karate. He has a fantastic sense of humor, loves video games, prefers fast food (chicken and French fries), and would rather watch TV than go to school – traits that describe maybe 75%-80% of 12-year-old boys in our country today.
He also has interests that are not typical of boys his age. His fascination with Riverdance" led us to buy him tap shoes for Christmas and he is now learning to tap dance, one of the few young male dancers in his dance school. On stage, what he lacks in technical skill he more than makes up for in enthusiasm and sheer energy.
He is a Cub Scout in the Pack which meets at our Church, and is an enthusiastic participant on camp-outs and excursions. He is the only "differently-abled" scout in the Pack, but the other parents tell us he has helped the other Scouts grow, learn, and accept that people who are "different" belong in our community, and can be good friends.
We have always prayed with Jimmy and he attends CCD classes with other children with learning disabilities. Of great joy to us is that he has received the sacraments of Penance and Eucharist, and understands, as much as any child, that God is good, that Jesus died for us, and that we are all called to help others however we can.
He loves babies and can make any baby smile with a special glance and peek-a-boo. And he is a teacher. He has taught his own parents how early childhood learning and development proceed, how socialization actually occurs. For our older children, it was a smooth and seamless process. For Jimmy, it has been tiny steps, all in order, to reach each and every milestone.
He has taught us as well by introducing us to hundreds of wonderful people we never knew before – other persons with Down syndrome, with other chromosomal differences, with autism, muscular dystrophy, cerebral palsy, spina bifida, and apraxia (to name a few). He introduced us to their families, many of whom cheerfully live lives of beautiful example to the world, sacrificing for their children. Because of Jimmy we've met a whole new world of teachers and therapists who spend their lives helping individuals with "special needs" learn and thrive in our world today, good people who give these children and their families well-founded hope for the future.
As for Jimmy's future, we have great dreams for him, dreams that are not as farfetched as they once would have seemed. He attends an excellent school that emphasizes basic academics as well as life- and job-skills on into young adulthood. Our goals for him are becoming more focused as he matures, and we are optimistic that he will one day hold a job, live at least semi-independently, and perhaps even marry.
So we have learned that Jimmy has many more gifts than "deficits" or "disabilities." He has many strengths which he brings to his world, our world, in his daily interactions in school, church, and community. And, he has a future, God-willing, as a tax-paying citizen!
But sometimes over a cup of coffee or glass of wine, we replay the past. What if? What if the geneticist who told us about Down syndrome after we saw Jimmy in the flesh, only minutes old, had been a pre-natal diagnostician telling us about "defects" in a "fetus" we hadn't met? As it was, we had held Jimmy, counted his fingers and toes, seen that he had lots of hair, beautiful blue eyes, and a strong resemblance to his older siblings. But both of us grew up never knowing or coming into regular contact with anyone with more of a disability than nearsightedness. What if that pre-natal diagnostician had told us what good friends of ours were told by a genetic "expert," what many couples who undergo pre-natal testing today hear: "If you have it, it will probably never walk or talk," or "You owe it to yourselves and your other children to terminate this pregnancy."
Fear of the unknown might have caused us to panic, to doubt our own abilities, to doubt what we now know so well: that God does not make mistakes. In our family we know we are blessed; while we mourned for a time the loss of the child we had expected, we never had to grieve the loss of a child we had "terminated."
When a couple conceives a child, this new person is a total mystery, a complete unknown. In our world today, pregnant women routinely undergo pre-natal testing: blood "screening," and perhaps riskier, more invasive procedures such as amniocentesis or chorionic villus sampling. Their motives are understandable; they are seeking reassurance that their child will be healthy, will not have "defects."
Pre-natal testing, when used to determine conditions that can be corrected medically or surgically, is a life-affirming, life-enhancing tool. But tragically, it is more-often misused as a weapon against the child by those who think everyone is better off if the child is dead.
Years ago, there was a trust that "all would turn out right." The youngest child of our friend Beryl is now forty-four years old. That Bradley has Down syndrome was, of course, not determined prenatally; in fact, he was five months old before physicians confirmed what Beryl suspected, "that something wasn't right." But rather than "put him in a home and forget you ever had him," which was the advice she and her husband received, they resolved to raise him with their four older children. "Bradley learned so much from the other kids, and they got so much from him. Even now he is their favorite." Beryl tells us that Bradley is the finest Christian she knows. "He understands better than most people what prayer is about. He has total and complete faith in Jesus Christ."
A key question then is, how can a couple today with no first-hand understanding of persons with disabilities best be served when given a pre-natal diagnosis? What happens when they are counseled by a professional who has incorrect, or even incomplete, information? The National Institutes of Health (NIH) Guide to Clinical Preventive Services #41, "Screening for Down Syndrome" tells us that today about 91% of families who receive a pre-natal diagnosis of Down syndrome (and that diagnosis may not even be accurate, by the way) abort their unborn children. Imperfection, most folks seem to think, is a capital crime. But aren't we all imperfect? Are persons with disabilities actually less imperfect because of their innocence, honesty, and lack of guile, because of their ability to elicit grace and compassion from those they meet?
Physicians and clergy familiar with, and comfortable with, families who cherish members with disabilities are in the best position to counsel such couples. Many can and do witness to families that children with disabilities enrich families and our entire world just as any child does. They recognize their responsibility to speak truthfully to couples stunned by a pre-natal diagnosis who come to them for guidance.
But given the high percentage of couples who choose to terminate their babies with Down syndrome, it is obvious that many doctors and clergy do not know first-hand how rich and satisfying the lives of the mentally and physically challenged can be. They owe it to themselves and to those who come to them for counsel to get to know individuals with disabilities, families who live with "special" children. They owe it to themselves to spend time with the therapists and teachers who work with the children and their families and learn about the joy, the sense of accomplishment that these children and their teachers realize when a step is taken, a word is spoken. They owe it to themselves to recognize that perfection is not an IQ number or physical wholeness.
Aren't our friend Bradley's prayers and his beautiful Christian example meaningful contributions to our world? Our 12-yearold Jimmy reads on a second-grade rather than sixth-grade level – but does that really matter? What difference does it make that he will probably need to use a calculator to solve the most basic math problems? Does any of this mean that Bradley and Jimmy should not be alive? Bradley does not live completely independently, and it is likely that Jimmy won't either, but who among us does? Don't we all need others? We are happy to give financial and emotional support to our older children – why should giving that sort of support to Jimmy be less satisfying? Why should babies like Bradley and Jimmy be denied life when they do not suffer any more than any of us suffer in this life, when they do not cause others to suffer?
In truth, just as we all have "good" traits and "bad," so do persons with disabilities.
Just as our "normal" children pleasantly surprise us as often as they discourage or disappoint us, so do children with disabilities. Raising children, with or without disabilities, is not easy, period. But all children offer their families many positives, many joys, and deserve the opportunity to grow and participate in society, to contribute to our world to the best of their abilities. Families seeking guidance deserve to hear this truth.
Mother Teresa got it right. She said the United States is rich in many things, but is an underdeveloped nation when it comes to love. Real love, and all-embracing love. Love that welcomes persons with unusual or difficult physical or mental limitations.
If we speak of "political correctness" and claim, in its name to praise diversity, we cannot expunge diversity in our progeny, our future. It is not politically correct to single out those with limitations for destruction.
But if we could, would we change anything – would we travel in time to that unknown, hidden instant when a meiosis went wrong and our past-prime cells gave Jimmy a third number 21 chromosome and the difficult physiological consequences that followed? No. The answer is no. Each of our children was and is different. Jimmy was and is different. But he, like each of our older three, has made us different and – though we aren't impartial – better. He led us to a better life, and he gave us our advanced degrees in parenting. And that's only so far...
Mary and Vance Salter have been married for 32 years and live in Miami, Florida. Mary, a nurse, runs a support group called "Mom's Night Out" for mothers of children with disabilities. Vance, a lawyer, is recipient of the American Bar Association's "pro bono publico" award. He serves as guardian for a young man with Apert syndrome.