March 2, 2007

Family seeks to help disabled son

Friends, neighbors commit to Jonah building awareness and funds

By Carol Rosen
Editor

Jonah Chung is a smiling 5-year-old who likes to play on computers. You wouldn’t know he is different from any other child until you try to talk with him.

Jonah Chung likes to play games on his touch screen computer. He also communicates with his family using pictures and a voice output device.

Jonah doesn’t speak and he can’t hear. He was born with a genetic abnormality called Chromosome 18q-, which is a small deletion of genes on the long arm of his 18th chromosome that leaves him with congenital defects and medical problems. He has a long list of problems including both ear canals were closed at birth and he was born without ear drums; he has a heart defect requiring surgery or an implant, his brain stem is herniating into his spinal column; and he is autistic.

In short, he sees more medical personnel—doctors, specialists, therapists and teachers—than most of us will see in a lifetime. Because of his autism, he has been unable to learn to sign. He communicates with pictures using a computer. However, he loves playing with his computer and listening to music.

In early February, the family began raising money to buy Jonah a service dog. This is not just any service dog, but one that has been trained for two years to not respond to Jonah’s movements, but to provide ease in a school setting, give him some safety and to help curb Jonah’s separation anxiety.

These Autism Service Dogs of America cost $13,500 each. Besides the two years of training to get them ready, the dogs require one week of training in Lake Oswego, Ore.—where the dogs are trained--with a caregiver, followed by two weeks training at the home with the family as well as Jonah. Besides their training, the dogs receive all their shots and other necessary medical care including spay or neutering. The training is rigorous, only about 40 percent of them actually become Autism Service Dogs.

The dog is for Jonah’s sixth birthday in March. “We’ve always known that the addition of a dog to our family would be a benefit to Jonah. But only through the Autism Service Dogs of America did we understand the huge opportunity for Jonah’s overall well-being and numerous other areas, including social skills and acceptance level,” James Chung told a friend.

In most cases, the dog accompanies the child at all times when the child leaves home, and can help calm the child, reduce emotional outbursts and serve as a positive social link for the child to their home, school and community.

Now that they have raised the money, ASDA will match Jonah’s needs to a dog that will be right for him. When the dog is ready, Jonah’s mother, Caryn, will travel to Lake Oswego for four to seven days of training. Then the dog will come here for several weeks along with a trainer.

The Willow Glen community, the Chung’s friends, Jonah’s school—Sunny Days Preschool—which is an early intervention preschool program for children with disabilities - and friends and co-workers from James’ job at PayPal contributed $18,000 in 10 days.

“The community has been wonderful,” Caryn said. “Our friends in Willow Glen are very accepting of the disabled community and they realize that a child with special needs is still a child,” she added.

“The contributions are tax deductible, and we’re giving the overage to ASDA for whatever they can use the money for,” said Caryn. “We haven’t specified what they can use the money for. It’s up to them. It costs a lot to raise and train these dogs, to spay and neuter them, give them medical care and whatever else they need. We know that ASDA operates on a shoestring, so perhaps this will help them serve more families.”

Caryn was surprised at the outpouring of money. “It’s hard to ask for help and to raise funds. It’s been an amazing response,” she added. “We’ve been amazed at people’s response.”

Jonah’s disability is rare, it strikes one in every 40,000 children. Doctors and researchers haven’t yet discerned what parts of the chromosome do what, but they do know the effects.

Jonah is the middle child of three brothers. Jacob, an 8-year-old who attends Valley Christian Elementary loves his younger brother, said Caryn, and has learned compassion from Jonah’s disabilities. His younger brother Eli is 2.

To learn more the Chung family and their efforts, visit the Web site at www.jonahchung.com.