Tuesday, July 10, 2012

Twins with Down syndrome communicate with sign language while they learn to speak

They received the news in the hospital, soon after the twins were born. They would never forget the words: Down syndrome.
“I said, ‘What will we do?’” the mother recalled. “And he just said, ‘We’ll love them, that’s all.’ And that was the answer.”
So it goes in the home of Trish and Tim Graham, where the meaning of life arrived on June 28, 2007, in the form of two tiny infants, swaddled in pink. The Liverpool couple are raising three children: Timmy, 8, and his sisters, 5-year-old Sophie and Sara, twins born with a genetic disability for which the only known remedy is a loving family.
For generations, children with Down syndrome faced an inability to speak, to ask for a glass of water or the time of day. Through early intervention school programs, the twins have learned a basic sign language, a hand-based vocabulary of essential words. They form sentences and talk to each other, bridging a gap that once could have meant a childhood of solitude.
In this learning process, they’re not alone.
“We knew we would need patience, and hopefully, we will have enough of it,” Trish Graham said recently. “But I think we’re stronger than we ever thought we were.”
The Grahams work for National Grid, both in the downtown Syracuse office, although Tim’s position often requires travel throughout the Northeast. They met in 1996, when he moved to Syracuse, and they married five years later. When their son, Timothy, arrived in 2003, they figured parenthood would follow a normal course. And when Trish became pregnant with twins, they braced themselves for challenges that, in retrospect, seem minor.
Down syndrome results from an extra copy of one human chromosome. Every year, the developmental disability affects about 5,000 newborns in the United States. A century ago, most would die before adolescence. Today, they survive to advanced ages and enjoy meaningful lives.

Today, her group — a loose membership of about 180 families — dispenses up-to-date information and helps connect parents to preschool programs that will become critical to their lives. Her son volunteers at the local library or the church. He has friends and family.
“Our son brought us a new perspective on what is important,” Bottego said. “He a bubbly, fun, caring person. ... If you ever met him, you wouldn’t forget him.”
Bottego said the toughest obstacle for Down syndrome families is often having to fight for their child with cash-strapped school districts that are looking for places to cut costs. Once a child is diagnosed, the parent’s world becomes a nonstop treadmill of tests, applications and paperwork. But the services become a lifeline.
“You pick your battles, and you learn,” Bottego said.

The Grahams speak of their children’s teachers and therapists with a reverence that extends beyond most family-school relationships. They say they’ve been blessed by an abundance of support from the community. The twins spend mornings at Main Street, a North Syracuse Early Education Program that serves 350 preschoolers, with and without disabilities. There, speech therapists teach sign and verbal cues.
“We have children who come here, and they are non-verbal, and later they are able to go into kindergarten, talking. Those are huge changes, and everybody can see that,” said Main Street language therapist Eileen Spillane-Healy. “But then there are the small accomplishments, like two kids using signs to express their thoughts. That’s how I measure success: Do we make changes in a child’s life?”
The act of speaking requires a dexterity that is especially difficult for children with Down syndrome. In recent months, the twins have increasingly showed signs of vocalizing. One day, when Tim picked up Sophie from the Gingerbread House, the daycare program where they spend afternoons, she said “Daddy,” clear as a bell. They viewed it a breakthrough. Another time, she called her sister’s name.
“It’s a glimmer of hope,” Trish said. “We’re building on it.”
The parents have learned sign language as well, but they always use words, encouraging the twins to speak.
“You tell them to get the dolly or the blanket, and they’ll get it,” Trish said. “Tim and I are learning as we go.”

The meaning of life. One day at a time.
“Sometimes, you’re just trying to get through the day,” Trish said. “He works full time. I work full time. It’s a lot of stress. It’s a lot of figuring out who’s going here, who’s going there. But we’ve been dealt this hand. All we can do is the best we can.”
“Look, this is not what defines us,” she said later. “Everyone has something going on. Some people take care of sick parents, some take care of sick husbands or wives. We have kids with special needs. That’s all.”
She looked at her husband and smiled. The girls were getting ready for bed.
“I used to say, ‘Wow, a kid with Down, that must be tough,’” Tim Graham said. “Now, I don’t feel sorry for them at all. I know how they love that kid, just as much as anyone else does.
“I think people think, ‘Oh, that must be devastating.’” he continued. “But you just roll up your sleeve, because you love your kids. You learn that what matters with your kid is not what they’re going to be. What matters is whether they will be happy. What matters is that they will love their lives.”
“We have the greatest kids in the world,” he said later. “And I think Trish said it perfectly: Everybody has something. We just happen to have two kids with special needs. These are our kids. This is our lives. We love it.”

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