Raising a child with hope

If you happen to be visiting New York's Times Square on Sept. 25 and look up at the right moment, you will see Hannah Hobaugh grinning at you.

A photo of 3-year-old Hannah, who lives in Santa Rosa, will appear in a 40-minute video that will be displayed on the giant NBC Times Square screen.

Hannah is a preschooler at a local Montessori school. She plays with siblings and friends. She talks, she laughs, she jokes. She can understand American sign language and can sign over 200 words herself.

And Hannah -- like every person featured in the Times Square video -- has Down syndrome.

According to the National Down Syndrome Society, it is "the most frequently occurring chromosomal abnormality, occurring once in approximately every 800 to 1,000 live births."

Despite the high rate of occurrence, it wasn't that long ago that children with Down syndrome were called "Mongoloids." Many were institutionalized or shuttled off to separate classrooms where little real learning took place. It was assumed that the best one could hope for a child with Down's was a short life of happiness.

The same assumption was true of many other children with special needs, whether developmental or physical. Often, children who were born "different" or who developed a condition that required ongoing medical treatment were hidden in the family's equivalent of a dark closet.

But people like Hannah's mom, Diane Hobaugh, have thrown open the closet door.

"Children with Down syndrome don't need to be sheltered or institutionalized," says Hobaugh. "They can learn everything there is to learn."

The fact that Hobaugh is positively cheery about Hannah and her future doesn't mean that raising a child with Down syndrome is easy.

"When you first find out that you have a child with a disability it's numbing," says Hobaugh.

For some families, the knowledge that their soon-to-be-born child is disabled is the start of a dark journey. Instead, Hobaugh, her husband Jeff and their two older children chose to take the path of light.

When the baby was born, Hobaugh quit her job as an elementary school teacher in order to work with her daughter. She enrolled Hannah in Kindermusic at age six months, took sign language classes so that she could communicate more easily with the baby and every day worked with her on skills that other parents take for granted.

"I had to teach her to sit, to crawl, to kneel, to stand," says Hobaugh. "I remember one time we were playing at Howarth Park and a boy about Hannah's age stood up, and I exclaimed, 'Wow! He stood all by himself.'

"I had forgotten that children can do that."

Now that Hannah is 3 and is attending Brush Creek Montessori School two days a week, Hobaugh is a volunteer classroom aide, working one-on-one with her daughter and also teaching sign language to Hannah's classmates.

Hundreds of other local families are making similar choices. They are reinventing their lives so that their kids with special needs can receive the best education possible and so that they will become adults who can live independently, work and have a healthy network of friends.

But this isn't a journey that can be done alone.

People need the understanding that comes only from someone who is going through the same experience. They need a network to learn which doctors understand the medical and developmental challenges that people with disabilities face. They need to talk to one another about cutting-edge therapies and about how to push back when a recalcitrant bureaucrat says "no."

Hobaugh found those connections through the Sonoma County Down Syndrome Support Group, an informal organization of about 60 families that has been held together for 13 years by Gloria Huerta, whose 23-year-old daughter has Down syndrome.

"I went to my first meeting when Hannah was one month old," says Hobaugh. "It was like a family. They take you in and embrace you."

More than anything, says Hobaugh, the support group is about "the soulful part of sharing with people who know what you are feeling."

The support group would like to share what they've learned with others by creating educational materials and by getting into hospitals to talk to parents when a baby with Down syndrome is born.

"Those first few months are so important," says Hobaugh.

On Oct. 8, the group is taking -- literally -- its first step toward formalization by sponsoring a local "Buddy Walk." Coordinated by the National Down Syndrome Society, Buddy Walks will be held throughout the United States to raise both awareness and funds.

More than anything, the walk is about a better future for people with Down syndrome.

About raising a child with a disability, Hobaugh says, "You can't do it without hope, it's the absolute answer to everything."

Thanks to hundreds of local parents, children like Hannah -- who have so much to offer the world -- now have something to hope for.