Respite program aids Navy families with children with disabilities

From the Kitsap Sun:

BELFAIR, Wash. — It's never been easy being a Navy wife.

Rarely in one place long enough to forge deep friendships, they can find themselves alone in remote corners of the world, far from family and all the worn and familiar trappings of "home."

Add to that isolating scenario a new baby and a toddler with Down's syndrome and you're in Jessica Huckaby's world.

"I was so frustrated and stressed out," Huckaby, 28, said as she held 9-month-old Calton on her living-room sofa. Daughter Mattie, 2, the one with Down's syndrome, climbed on furniture nearby and lobbied for attention.

While husband Paul, a soon-to-be-chief at Naval Base Kitsap-Bangor, was away, there was so much for Jessica to accomplish on her own.

Besides caring for the kids and cooking and cleaning, there were almost daily trips into Bremerton for all kinds of appointments for Mattie. Her husband would relieve her as soon as he got home at night. But Calton had chronic ear problems, and often prevented the two from getting sleep.

They have a lifeline now, in the form of Tina O'Rourke, a helper who regularly comes to their home as part of a new Navy program that offers a helping hand to families who have children with special needs.

Already, 45 such families locally are receiving the much-needed help in the program that's called Navy Exceptional Family Member Program Respite Care.

Most of the families are in Kitsap but a few live near the bases on Whidbey Island and in Everett.

The program, which offers qualified families as many as 40 hours of free help a month, has only four other locations in the nation, in San Diego, Washington, D.C., Jacksonville, Fla., and Norfolk, Va.

O'Rourke has been providing respite care for the Huckabys for about a month. Her taking care of Mattie and Calton frees up their mother to run to the store, do the dishes, fold laundry and even take a nap.

Huckaby calls the new help God-given, and said it has made her and her husband better able to make it through the day.

"I am a better mother and a better wife, and it is allowing my husband to be a better dad, a better sailor," she said.

The idea for the national program actually originated locally.

Sherry Charlot, parent-to-parent coordinator of The Arc of Kitsap and Jefferson Counties, knew other branches of the military offered respite care to families with special-needs children, but that the Navy did not.

Frustrated, she contacted U.S. Rep. Jay Inslee, D-Bainbridge Island, who took the ball and ran with it.

The program that resulted got going this spring.

It formed as a partnership between the Navy and the National Association of Child Care Resource and Referral Agencies.

Five Navy-dependent regions were chosen to participate, including the greater Bremerton area.

Then the partnership subcontracted with regional social-service agencies to train and enlist "providers," people like O'Rourke who could deliver the in-home help. In Bremerton's case, the social-service agency was Lutheran Community Services Northwest.

Not a great deal of money was involved. Bremerton only got $132,000 for each of the two years of its contract. Salaries of the providers are paid for by the National Association of Child Care Resource and Referral Agencies.

But the program in Bremerton, for some reason, took off far faster than in the other places.

"I just think that the need is there, and they're getting the word out," said Paulette Rainer, Navy respite care coordinator for Lutheran Community Services Northwest in Bremerton.

The time the providers spend with the special-needs children who might have autism, severe allergies or feeding tubes, along with their siblings, is one-on-one, engaged time. The television is rarely on.

"It's total engagement with the kids," Rainer said.

Rainer is putting out a call for more providers to meet the popularity of the program. The training is free.

Rainer said it's "rewarding" to see people like the Huckabys finally get some help. "When you have children with special needs, it's not that easy," Rainer said.

Huckaby shared her story in the interest of seeing the program continue.

"It's not filling a desire; it's filling a need," she said.

Now she has the time and energy to speak of her love for Calton and, particularly, his special sister, Mattie.

"She is a blessing for us, she always has been. She always will be," Huckaby said.