Parents Of Special Needs Child Focus On Achievements

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By MARSHA ZEITZ

CONTRIBUTING WRITER

July 02, 2009 6:00 AM

coping with a special-needs diagnosis

• Consider getting a second opinion.
• Let yourself mourn, then become an advocate for your child.
• Read everything you can about your child's disability.
• Find a support group or share with family and friends so that you are not alone.
• Have hope. New treatments are always evolving.

Truman Cambra was only 3 weeks old when he woke up one morning with breathing difficulties.

"Every time he inhaled I heard a high-pitched noise," says Truman's 34-year-old mother, Kris Cambra of New Bedford. "It sounded as if something was obstructing his airway and making it difficult for him to breathe."

Kris and her husband Shawn, 38, rushed Truman to their pediatrician, who immediately advised the couple to take the child to the emergency room at either Boston Children's Hospital or Hasbro in Providence. "But take him now," the doctor said.

Truman was diagnosed at Hasbro with a rare pediatric cancer in his neck that required immediate surgical intervention. He was also diagnosed with a heart murmur that a cardiologist said would need monitoring.

The cancer surgery was successful but, in the months that followed, the infant experienced developmental delays, which his parents attributed to the child's illness and long hospital stays.

But it was more serious than that, and neither the cancer nor the hospitalization was to blame.

At 7 months, Truman was diagnosed with Williams Syndrome, a rare genetic disorder characterized by a distinctive facial appearance, developmental delays often coupled with strong expressive language skills, an endearing, empathetic personality and heart or blood vessel problems.

The Cambras faced the very strong likelihood that Truman would be a child with special needs.

Kris — who is a science and medicine writer at the Warren Alpert Medical School of Brown University — says that her first reaction was disbelief. She writes in an essay recently published in "A Cup of Comfort for Parents of Special Needs Children," "Things like that don't happen to people like us. I had no concept of the type of people these things happen to. I just knew it wasn't us."

Psychiatrist Scott Haltzman, author of "Secrets of Happy Families," is familiar with that response.

"We all have unrealistic expectations of who our children will be," says Haltzman, the medical director at NRI Community Services in Woonsocket, R.I.

He adds that the parents of a child with special needs realize early in the relationship that "their child will be special and that its needs will be different. That's the point at which they realize that their dreams and expectations are not going to be met. It's a different experience than the average parent who simply realizes that their kid is never going to love soccer."

"The adjustment is much more intense," Haltzman says, "but it's a necessary part of the evolution of a parent's identity. It allows the parent to accept their child for who he or she is."

Once a parent has accepted a diagnosis, many experts say it's natural to go through a period of mourning for the "perfect" child they anticipated. It doesn't mean that they think their child won't have a fulfilling life or that they love them any less. It just means that they need time to adjust to a new reality, to close one door before they can go on to open another one.

But, for the Cambras, grieving just didn't feel right.

"My husband, Shawn, and I never felt it was appropriate to grieve about Truman's genetic disorder because we felt that would devalue him," Kris say. "We decided early on that what was most important in our lives was Truman's happiness and that we would do whatever was needed to help him thrive. That was what we focused on."

Extended family are important. They are another pair of hands to help the parents, another set of arms to hug the children. They can be a very significant part of a support system.

"My daughter, London, was 5 when Truman was born," says Kris. "She was remarkably well-behaved throughout the ordeal. A lot of that was, I think, because our families were so involved. They tried to keep everything as normal as possible for her."

Special needs can include medical, behavioral, developmental, learning and mental health conditions. Truman, now 2, has difficulty with fine and gross motor skills, a more limited vocabulary than other children his age and the ongoing medical condition of Williams Syndrome.

He began receiving early intervention services when he was just 5 months old because of the lengthy hospital stay for his neck cancer. Since the WS diagnosis, Truman has received a host of home-based therapies, from physical therapy to language development.

Providing early intervention for children with special needs is vitally important to their development. That intervention might include family-centered involvement with physical, occupational and speech therapy and the advice of a medical specialist, genetic counselor or educational psychologist. Many services are mandated by federal law and can help families lessen the impact of a child's disability.

"Research has shown that providing intensive services at the earliest age possible can offset the effects of disabilities," says Christine Riley, an education advocate for Cape Cod and the Islands. "The earlier the child is exposed to services, the less the chance that the disability will impact their education and their generalized functioning."

Having a child with special needs is never what you bargain for, but it can be an extraordinarily loving and rewarding experience.

"Truman is who he is," says Shawn Cambra. "At first I was worried about what he would be like. But now that he is older I can see he has this outgoing, friendly personality. He puts a smile on at least one person's face wherever we go. If given a choice, I'm not sure I'd change him."

Children with special needs are often defined by what they can't do; milestones that are unmet, activities that need to be avoided, experiences that are, and will always be, denied. But, for the Cambras, it is the milestones that Truman achieves that are most important.

"I don't know what Truman will be able to accomplish when he's an adult," Kris says, "but I do know that whoever he is, it's fine. We're not spending a lot of time lamenting things he'll never do. We're letting him show us everything he can do."

"Of course," she adds, "there is a certain sadness that resurfaces from time to time but, day to day, Truman is so wonderful it's hard to imagine him any other way."