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Offering Hope, Not Don'ts. Great Expectations Pay Off

Jerry E. Sullivan
The Exceptional Parent, February 1997, p. 46-47
©1996 Jerry E. Sullivan
  Reprinted with the expressed consent and approval of The Exceptional Parent, a monthly magazine for parents and families of children with disabilities and special health care needs.
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How do you respond when a doctor seems to tell you your newborn child will not amount to much? This happened when our son was born with Down syndrome.
     Immediately after Danny's birth, a doctor "greeted" us: "Hi, I'm from the Human Genetics Department. Your son-What's his name? Danny? How nice-your son has Down syndrome."
     Instead of providing a sensitive explanation of our son's situation, the next hour-was mental torture. We were given a litany of "he can't" and "he won't" and "he'll never."
     Anticipating his birth, I had envisioned all kind of activities: sports, horseplay, reading. After the diagnosis, I felt none of these things would be possible. After all, Danny was said to be an unending series of can'ts, won'ts and nevers.
     But the doctor's pessimistic manner crystallized our resolve: Destroy as many predictions as possible, like any father, I had hopes and aspirations before my son was born. Why couldn't I have them now?

Helping Danny thrive
We read everything we could find on developmental delays and found a treatise on "thriving." It said in the first months of life, babies learn to embrace the world or retreat from it, depending on whether their parents embrace or retreat from them.
     Based on this approach, I started raising Danny as if he did not have Down syndrome. Games, rough-housing and reading became part of Danny's daily regimen.
     Because we started reading to Danny early on, he developed an appetite for books as voracious as any reader. He marvels in being read to and brings us his favorites when he decides it is "story time." He takes delight in turning pages; each is a new adventure to him.
     So far, only one of the dire predictions we heard over two years ago has occurred: Danny's speech is somewhat delayed. Instead, he shows a remarkable ability for sign language. It has become his second set of vocabulary.
     Now halfway between his second and third birthdays, Danny is ahead of where "normal" two-and-a-half-year-olds should be in some skills. Predicted to have low muscle tone and delayed physical development, he throws with vigor-balls, pens, blocks, car keys and crystal all have discovered flight at his hands.

Staying the course
Before Danny was born, we had high hopes for his life. His diagnosis temporarily caused us to lose hope.
     But our resolve to stay the course has yielded wonderful dividends. Looking back, we know we did not need to diminish our expectations for Danny.
     Children with special needs are blessings. They can teach us more about living than any textbook. By raising them properly, we are directly contributing to society's understanding of children with disabilities so that they, too, can make meaningful contributions.

Major Jerry Sullivan is Media Relations Officer for the Office of the Chief, Army Reserve in Arlington, Virginia. He holds a Ph.D. in political science and resides at Ft. Belvoir, Virginia, with his wife, Sharon, and three children, Danny (2), Sarah (5) and Steven (7).

Fathers' Voices is a regular feature of The Exceptional Parent magazine. This column, usually coordinated by James May, Project Director of the National Father's Network, focuses on fathers' experiences rearing children with special needs. Your contributions to this column are encouraged.
     For more information about the National Fathers' Network (NFN) or to receive their newsletter, write or call: National Fathers' Network, The Kindering Center, 16120 N.E. Eighth Street, Bellevue WA 98008, (206) 747-4004 or (206) 284-9664 (fax). Funded by a Maternal and Child Health Bureau grant, the NFN provides networking opportunities for fathers; develops support and mentoring programs; and creates curriculum promoting fathers as significant, nurturing people in their children's and families' lives.

Revised: May 4, 2001.