There’s No Need for Despair A Father’s Pledge to His Disabled Son

By: Stephen Gallup

“It’s too hard on you!”

That’s what our friends said many years ago, when my wife Judy and I were
immersed in an intensive home program designed to help our developmentally
disabled son Joseph.

“Nobody can keep up this pace,” they warned us. “We’re worried about you.”

Joseph had been born with mysterious problems, for which his doctors had no
answers. As an infant, he cried and thrashed about all the time, and
frequently spit up his milk. As he grew older, he failed to achieve the
usual developmental milestones such as crawling and walking. Judy and I
believed he was in some kind of distress, and in turn we too became
distressed when the doctors recommended only patience—and then counseling
to help us cope.

We felt that we had no choice, that we *had* to continue looking for a way
to help him, even if it meant going beyond what is recommended by
conventional medicine.

The early results of our explorations were encouraging. We found an unusual
doctor who was able to bring Joseph peace, so that the crying and vomiting
stopped and he became more tuned in to the world around him. Then we
learned about the home therapy program. We crossed the country to receive
training in how to perform it, and in fairly short order our baby, now 20
months old, began crawling on his hands and knees. We believed we had found
a way to enable him to catch up, and hopefully to lead a normal life.

All we had to do was continue performing that program, all day, every day.

But visible signs of progress did not occur every day, or even every week.
We’d known the program would not be easy. We knew a good outcome was not
guaranteed. On the other hand, we saw no reason to return to the mode in
which we beseeched pediatricians for treatment that was not forthcoming.
Those doctors had never even given Joseph a diagnosis.

Sometimes Joseph did not want to cooperate with his program. Sometimes,
Judy and I became exhausted or discouraged. That’s when the friends and
relatives stepped up their well-intended warnings. At one point, we bowed
to the pressure and attended a group presentation on stress, given by a
family therapist. We joined an audience of dozens of parents like
ourselves—all people who had little kids with conditions interfering with
their development—cerebral palsy, Down syndrome, or (like Joseph) something
still unidentified.

The speaker emphasized the importance of hanging together as a couple,
respecting one another’s emotional needs, and taking personal time for
yourself. Everything he said was wise and correct. But the people around us
needed more. I remember a mother who raised a question, speaking in a dull
monotone. “I know my daughter is never going to improve,” she said
bitterly. “And it just gets so hard to keep going through the motions, day
after day. I don’t know what to do.” The speaker gave a comforting
response, but another parent in the audience offered her own solution. She
said she relieved unwanted emotions by dumping them on her child. “He’s
nonverbal,” she said. “He probably can’t understand. So it doesn’t matter
what I say to him.”

The mood of sad resignation in that room had been bad enough, but this last
comment settled the matter for Judy and me. On the way back home, we
reminded ourselves that the other parents were not attempting programs like
ours. As far as we could see, they’d resigned themselves to their
situations, and had no reason to hope for improvement. We, on the other
hand, still held onto the ideal of our son’s complete recovery. Even when
progress was slow or not apparent, even when we felt blue, we had reason to
hope for the best.

The purpose of this article, and of the memoir I wrote about those years,
is not to endorse the specific interventions we tried. Yes, thanks to our
program, Joseph did eventually learn to walk, an accomplishment that
thrilled him as much as it did us. But complete recovery for him was not in
the cards. Worse, the sustained effort and sacrifice involved in pursuing
it had costs that we did not foresee. Our friends had been right to worry
about us.

Another family attempting similar interventions with their own child might
have better results, or they might see no improvement at all. And of course
each child presents a unique situation. So I don’t advocate any particular
course of action other than this: A family facing a major challenge needs a
plan they can believe in. In the first 18 months of Joseph’s life, his
mother and I had been frantic with worry. But then we found a reason for
optimism. The emotional climate in our home changed significantly as a
result. There was visible momentum in the right direction (at least often),
and we all benefitted. And four years later, when we recognized that the
time had come to change course, that experience gave us reason to
*continue*hoping for and even expecting the best.

I think, as long as we are making a good-faith effort to accomplish what
needs to be done, each day opens up before us with renewed promise. And
that is at least as important as long-range goals. Perhaps more so.

Stephen Gallup is the author of What About the Boy? A Father’s Pledge to
His Disabled Son. Please visit www.fatherspledge.com for more information.

Purchase What About the boy? A father’s Pledge to His Disabled Son here