A family's journey into the world of special needs begins somewhere. Whether it's prenatally, at birth or days, weeks or even years later when a diagnosis is made, at some point a family realizes they have begun a journey down a path they probably never expected to travel.
A family's journey into the world of special needs begins somewhere. Whether it's prenatally, at birth or days, weeks or even years later when a diagnosis is made, at some point a family realizes they have begun a journey down a path they probably never expected to travel. Where are they headed? To what health professionals like Lori McCullough call "the new normal." It starts with… The Diagnosis. Dr. Barry Halpern is a neonatologist in Columbus, working with newborns and the health issues they face. He's also the dad of 24-year-old Max, who has Down syndrome, a chromosomal abnormality that puts a child at greater risk for a variety of medical conditions and cognitive delays. "What all parents do is have this image of their baby before it's born," Halpern said. "There is never a blank slate." But when a child is diagnosed with a disability, whether pre- or post-birth, that slate gets wiped clean. "You've lost the child you never had anyway," Halpern said, "but you have nothing to replace that image with." Halpern is working with the Down Syndrome Association of Central Ohio (DSACO) to develop guidelines for communicating diagnoses to families. DSACO recently surveyed Down syndrome parents to find out what their diagnosis experiences had been. The results varied from families who felt supported by sensitive health professionals to those left stunned by diagnoses overheard in hospital hallways or delivered on the run by a never-to-be-seen-again medical resident. The Kingsley family had a rough experience when they learned their then-7-month-old son Brett had Spinal Muscular Atrophy Type 1, an especially severe form of this degenerative disease. They were in the midst of tests for what seemed to be developmental delays, only to be given the SMA-1 diagnosis during a consultation when all three of their children, including then-toddler son Ethan and oldest daughter Paige, then just a preschooler, were present. "I don't think there's any soft way of putting it," said dad Scott, but his wife Allison has never forgotten how Paige came away from the experience and "did not like boy doctors" anymore. They have since had their faith in the medical profession restored, thanks to people like McCullough, a social worker at Nationwide Children's Hospital, and nurses and doctors who, as Allison said, "truly see the child in Brett and not the diagnosis." But once a diagnosis is delivered, every family is unique in how they react to… The Impact. Many health professionals use the "five stages of grief" model developed by Dr. Elizabeth Kübler-Ross to describe how families react to a diagnosis: denial, followed by anger, bargaining, depression, then acceptance. But many others think it doesn't apply. Marge Barnheiser is the program director for DSACO and also the mother of 25-year-old Alyson, who has Down syndrome. "I kind of don't believe it because I've seen so many different responses," said Barnheiser. "I just wanted normalcy. I wasn't in a rush and it took me a couple of weeks to want to learn about Down syndrome." Dona Holmstrom, whose youngest daughter Kenzie, now 3, was diagnosed with Down syndrome at birth, said she also just needed to get away from the crush of other people's curiosity. "I sent text messages but couldn't talk to people," Holmstrom said. Vickie Hobensack is a nurse at Nationwide Children's Hospital, working with families whose children have congenital disorders. Like Halpern, Hobensack said she sees families struggle to replace the pre-diagnosis image with what's real. "It comes and goes," Hobensack said of the emotional impact, "especially with every milestone event like birthdays, the first day of kindergarten when other children are heading off but not yours, with senior prom or going off to college." Parents, said McCullough and Hobensack, should allow themselves to not react perfectly. Most health professionals know that families will not "hear" all the information getting hurled at them initially. "It's OK to ask no questions," Hobensack said. But when you're ready, added McCullough, don't be afraid to ask more than once and to write down what you're told. What is most critical, say parents and professionals, is to surround your family with… A Support Network. Help arrives in many forms when a child has a special need. It was the nurse who brought Allison Kingsley a boxed lunch when she lost track of time during an early round of Brett's testing. It was a friend's mother-in-law who knocked on a neighbor's door because she had seen a girl with Down syndrome playing there, finding Dona Holmstrom her first other-parent connection. The challenge for many is accepting the help that is out there. The Kingsley family calls that help their "Circle of Hope": They are the small army of First Community Church members, staffers at Nationwide Children's Hospital and Easter Seals, Brett's kindergarten classmates and many others. "We've surrounded ourselves with people like us," Allison Kingsley said. Within that first year of diagnosis, many parents also learn to access other parents. Zorica Wooddell got involved with DSACO's Little Buddies support group soon after her daughter, Sophia, now 4, was diagnosed with Down syndrome. This group primarily serves families whose children are 3 or younger. "You feel lost," Wooddell said, "but finding support through other families is the best thing you can do. You're all in the same boat." But not all support, however well intended, is going to be useful for every family. Hobensack said she's wary of what parents pick up on the Internet, especially the blogs and chat sites that many people use to connect with others. "Beware of the Internet," Hobensack said. "If Suzie's mom is crazy, there's no warning on her blog that says so. Blogs go both ways (with the helpfulness) but it comes back to treating each family (and their situation) as individual." And not every support group is a perfect fit for a family's needs. Recognize real support where you really find it, said McCullough: "You might have a whiny support group but your bowling league might be better support." So where are these families headed? Eventually, say parents and professionals, they will arrive at… The New Normal. Parents and professionals define the "new normal" in these ways: *flexibility: "you come to the expectation of the unexpected," said McCullough. "Sometimes Christmas Eve is spent at the hospital." *a sense of humor "even at stuff other people would find morbid," said McCullough. *patience and what McCullough calls "having grace" because "sometimes one person will be strong and the other will not; it's a teeter-totter." *advocacy: "You will always be an advocate," said McCullough but, added Hobensack, recognize that "it is not your job to teach the world." *whole-family health: "You can't take care of the child with special needs to the exclusion of the siblings, your spouse and yourself," said Hobensack. "You deserve to be happy," said McCullough. *humility: "Be willing to access the support that's out there," said McCullough. And, most of all, don't forget to appreciate the journey, said Holmstrom: "It's hard and it is an emotional roller coaster, but the rewards far outweigh the work. The little things are very rewarding. We take nothing for granted."