Offer Yourself Hope When Others Don't

"The notification process is the single most important factor in parents’ ability to cope and manage with the blessing of a child with special needs. And make no mistake about it -- these children are blessings. Raised properly, they can teach us more about lives and ourselves than any course or textbook, and in raising them properly, we are directly contributing to society’s understanding of these children so that they, too, can make a meaningful contribution with and of their lives."






  Offer Yourself Hope When Others Don’t
Jerry E. Sullivan

How do you respond when a trained, seasoned, experienced doctor tells you that your newly-born child will not amount to much more than a doorstop? This was our experience when we were informed that our son, Danny, was born with Down Syndrome. Such news is not what is needed when the child is but five hours old and nothing but hope and promise are on the minds of the parents. We had two responses. The first was immediate; the second continues to this day and will, in all likelihood, continue as long as we are an influence on Danny’s life.

The notification process is the single most important factor in parents’ ability to cope and manage with the blessing of a child with special needs. And make no mistake about it -- these children are blessings. Raised properly, they can teach us more about lives and ourselves than any course or textbook, and in raising them properly, we are directly contributing to society’s understanding of these children so that they, too, can make a meaningful contribution with and of their lives.

If that is so, why, in this supposedly enlightened age, do some doctors continue their notification with, what appears on the surface, a callous disregard of the emotions of parents? In an era where the medical profession must satisfy a multitude of legislative demands and oversights on its practices, why has there been no bill introduced or passed that mandates an understanding bedside manner?

We remain convinced that part of our handling stemmed from, of all things, medical insurance. At the time, I was full-time doctoral student while my wife was a full-time mother. We already had two children, all of whom were being supported on a fellowship stipend, student loans and whatever could be mustered through service as an officer in the Army Reserve. A life of luxury it was not. Our medical insurance was thus Medicaid. It was the only way to ensure that my family would receive some modicum of health coverage, which was especially critical for my wife. She has permanent paralysis in her left leg, stemming from medical malpractice by an Army doctor when she was 14.

We were treated as being the paramount of ignorance. Our doctor "greeted" us with the following introduction: "Hi, I’m from the Human Genetics Department at Children’s Hospital, and your son What’s his name? Danny? How nice. Your son has Down Syndrome."

The next hour was an exercise in mental torture, but it needn’t have been. The good doctor gave us the physiological signs indicative of Danny’s diagnosis, but we parried every indicator she gave with physical features in both mother and father that could also provide some explanation. No matter. She was the doctor and we were Medicaid patients. That hour was spent with a litany of "he cant’s," "he wont’s," and "he’ll nevers," not exactly what a parent needs to hear on the first day of their new child’s life.

That notification imparted a grieving process that could have been mitigated had it been handled better. We later learned that we were not unique. She had a history of these notifications, conspicuously and coincidentally, also, with Medicaid parents. My wife and I learned that, while grieving is a collective journey, so is it an individual one. But although the grieving was made much more difficult by the way in which we were told, it also crystallized our reaction as parents, and particularly my reaction as a father, as to how we were going to proceed with Danny’s development.

This resolve hardened at the doctor’s concluding remark. "Try not to think of him as a Down’s baby who is also your son," she said, "but as your child who just happens to have Down Syndrome." Well, now. Rarely have I shook as I did when she uttered that fateful advice. In an emotional and vocal crescendo, my voice raised with rage as I uttered each syllable, responding, "I do not need you to tell me how I should think about my son."

The battle lines were now drawn. On the one side was a personality molded by medical journals, confronting, on the other side, not just a father, but a dad. Men may be from Mars, women may be from Venus, but our doctor was from left field. Our humiliation at her hands lasted but an hour, but hers at our hands would last a lifetime. We resolved to do one thing: destroy as many of her predictions as possible.

We had no idea that we were to become parents of a baby with Down Syndrome. Because nothing would change our mind about keeping the child, we opted not to have an amniocentesis. We did, however, have an alfafetoprotein test, and we were told in no uncertain terms that the baby did not have Down Syndrome. We were not told that the test was only 60% accurate.

Being a dad, anticipating another son in the household meant envisioning the usual sort of dad things: sports, horseplay, reading, etc. After the diagnosis, though, the initial reaction was that none of these things would be imaginable, much less possible. Danny was, after all, an unending series of cant’s, wont’s and nevers.

A startling revelation ended the grieving process, at least for me, and began my own steps towards recovery. If the doctor could be so callous towards our opinions, why couldn’t I be likewise towards hers? And at that point, I resolved to ignore the predictions and treat Danny as I would had he not had Down Syndrome or any other disability. Nothing, of course, could change the reality of Danny’s condition. Try as we might to hold out against the diagnosis, the blood tests confirmed what the doctor had told us. Danny, indeed, had Down Syndrome.

But what about those "cant’s," "wont’s" and "nevers?" Was there anything we could do to overcome them? We pored over every piece of literature we could find, discovering, in the process, a very brief treatise on the theory of "thriving." Developmental delays, the theory went, arose because parents did not embrace and engage their Down Syndrome children the same way they did their normal siblings. Instead of tending to Down babies with the same play and affection as regular kids, many parents spent the first critical months of life looking at their children more as accidents or patients. The loss of interaction, stemming in part from the grieving process, not only caused parents to distance themselves from their gifts, but also caused the babies to distance themselves as well. Instead of learning to embrace the world, the children were learning to retreat from it. They weren’t thriving in their households the same way "normal" children did upon coming home from the hospital.

Hearing of "cant’s," "wont’s" and "nevers" on the child’s first day of life may cause some parents to behave this way. But among the many gifts and talents God has bestowed on me, near the top is stubbornness. How could I think of my child "as my son, who just happens to have Down Syndrome" when the same doctor who imparted that philosophy had just finished telling me what life wouldn’t have in store? The answer was simple: ignore her. Like any father, I had high dreams, hopes and aspirations before my son was born; why couldn’t I have them afterwards? As parents of exceptional children, we all want nothing less than a life of normalcy for our kids. I started Danny on that path by raising him not as if he had Down Syndrome, but as if he hadn’t. Games, rough-housing and reading became part of our daily regimen, but to that developmental diet we added two important ingredients: prayer and holding. Prayer helped us in ways beyond description, and we soon found that, as Danny developed his motor skills, he began folding his hands and joining us in the best way he could. The smile that came over his face each time we prayed reminded us that God had not abandoned us, even though we thought otherwise during his first few weeks of life.

Holding and touching Danny was more critical to his well-being than all of the therapies we had to memorize. To this day, he feeds of off physical affection with the same relish of feeding at the dinner table. It is the antidote to the dark side of the thriving theory. We also came across a column by George Will, written about his oldest son, Jonathan, now in his twenties. Jonathan, too, has Down Syndrome. Will wrote that his son would never know the joys of literature, and perhaps this is an attitude prevalent among so-called experts and parents of Down children to this day. Our experience has been that, because we started reading to him early on, Danny has a book appetite as voracious as any reader. He manifests his passion for books each time we read to him, and even brings us his favorites when he’s decided that it’s "story time." When we read to him, Danny glows, and he takes particular delight in turning the pages, perhaps because each leaf represents a new adventure. Another forecast dashed on the rocks.

Thus far, only one of the dire predictions we heard over two years ago has had any merit. Danny’s speech is somewhat delayed, but that is the only aspect of his development that is. In fact, in some gross motor skills, he is ahead of where "normal" two-year-olds should be. What Danny can say should not be confused with what he can communicate. He has an understanding that the spoken word is our primary vehicle for communication, but when a voice within screams to converse with those around, some method will be found to break through whatever physical barriers exist. Danny has hurdled through this temporary encumbrance by displaying a remarkable ability to grasp sign language. It has become his second vocabulary.

As Danny is halfway between his second and third birthdays, we have also discovered that he need not fear playing baseball. The boy can throw, and it’s not just balls: pens, pencils, blocks, car keys, crystal and china have all experienced the discovery of flight at his hands. To be certain, it was "dad play" that launched him on this particular trajectory, but for someone who was predicted to have low muscle tone and delayed physical development, whatever frustrations we may experience at this particular tendency have been replaced with our hope for the long-term ramifications.

Long before Danny was born, and long before we knew of his condition, we had high hopes for his life. Pronouncement of his condition caused, temporarily, those hopes to be shipwrecked. Our resolve to stay the course despite and in spite of his prognosis has already yielded tremendous dividends. In retrospect, we should never have had diminished hopes or expectations for our son. No one, after all, was ever court-martialed for ignoring doctor’s orders.

Jerry E. Sullivan
Ft. Belvoir, VA
©1996 Jerry E. Sullivan

A shortened version of this article was published in the "Fathers Voices" column, Exceptional Parent magazine thanks to Mr. Sullivan for his permission to use this article.