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When Michael and Pam Wallace were pregnant with their fourth child, everything appeared to be typical. The standard triple screen test came back negative, but they soon found out that is screen is just a screen.
Torin Wallace, born Aug. 8, 2006, was diagnosed with Down syndrome, changing the then-36-year-old Pleasanton mom’s expectations of her family’s future.
“Whether you find out your child has Down syndrome prenatally or at birth, the news is devastating,” she said. “The picture of the ‘perfect’ family that you had imagined no longer exists.”
Right away, the Wallaces were given information and resources by the staff at Washington Hospital in Fremont, whose NICU is run by Stanford. A social worker provided them with physicians in the area as well as recommended support groups in the area.
The Down Syndrome Connection of the Bay Area in Danville offers many services for children and parents, including support groups, play dates and educational workshops. Martha Hogan, co-founder of the organization, said they serve about 100 children a week, although the number of families they serve is well over 500.
“We’re lucky, in a way, that when these little ones are born, we know what it is,” Hogan said. “We don’t know why it happens, but it’s well understood.”
While devastating, the diagnosis of their son led them to learn more about the disorder. In turn, they found hope that Torin can lead a full life and they hope to share their knowledge to encourage other families.
Perhaps the biggest misconception they had previously thought was that Down syndrome can be mild or severe.
“There are people with Down syndrome driving cars, graduating four year schools, being completely independent on their own finances, getting married.
“What’s wonderful now, unlike 30 years ago,” she added, “those severely affected live in independent group home. No one has to be institutionalized or have to stay with their parents.”
Pam and Torin were recently guests on “The Doctors,” a show where a panel of doctors address a few medical issues. They had footage of the Wallace children playing together and Torin even had the chance to meet John C. McGinley, a star on “Scrubs” and spokesman for the National Down Syndrome Society.
However, Pam Wallace was disappointed that the show seemed to reinforce the stereotype of developmentally disabled children, instead of shedding light on the new wave of education available for young children.
“With all the things we can do, they are more like typical children than not,” she said. “It’s frustrating for new parents.”
“I am a physical therapist,” she added. “[Children with Down syndrome] have benefitied so much from physical therapy, occupational therapy and speech therapy. It’s a shame they didn’t touch on that.”
These therapies now start when babies are 8 weeks old and help facilitate developmental milestones. For example, some children learn to walk after crawling, whereas those with Down syndrome can’t miss a step, they must learn to sit, then crawl, stand and finally walk. And they may not be able to do so until they are 3 or 4.
“Without intervention, the children can develop compensations,” Pam Wallace said. “It can cause problems in the long run, where their walk may look different. When they get these therapies, then they reach these milestones.”
Parental involvement in meeting the developmental goals is key, and often they are encouraged to do so during play time.
Getting the word out about the new hope for children with Down syndrome is important to the Wallaces, as they have learned a disheartening trend.
“Over 90 percent of those babies that the mothers find out they have Down syndrome are terminated,” Pam Wallace said. “A lot of that is because there is a lot of ignorance about what the quality of life would be and what they would be able to accomplish. They do lead wonderful lives and it’s a life worth living.”
Hogan said it is helpful to recognize the hope for each child.
“We know that there are similarities in each child and they are also unique in everything they do,” she said. “It’s important to help the parents understand the potential that each child has; to be the very best they can be.”
With this new education, Pam Wallace has learned that Down syndrome doesn’t define these kids, instead it’s simply a characteristic that’s a part of them. While it has been a challenge to raise a child with Down syndrome, she has learned she does have a “perfect” family, just not the one she had originally imagined.
“There is a tendency for us as parents when we learn of their diagnosis to put a ceiling on what we think they may be able to accomplish,” she said. “Our philosophy in raising Torin is that we will raise him with the same expectations as our other three children and as we hit obstacles, we will address them as needed. As a result of this approach, Torin is truly just one of the kids.”
Down syndrome resources
Down Syndrome Connection of the Bay Area
117-A Town and Country Drive, Danville
362-8660
www.dsconnection.org
National Down Syndrome Society
www.ndss.org
National Down Syndrome Congress
www.ndsccenter.org
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Pam Wallace, with her 2-year-old son Torin, who was diagnosed with Down syndrome. -
Torin Wallace has had much success with early intervention therapies to help meet development milestones. The Wallaces are raising him with the same expectations as their other children, Gavin, 8, Kieran, 7, and Colin, 5.
I work with special education students at a high school in Lake Tahoe. The program I work with is called WorkAbility. It is designed to help transition students from school to work. Some of my students have Downs Syndrome and they are delightful to work with and always a joy to be around. The students hold jobs as well as attend school and complete class work. They volunteer and participate in Special Olympics. They are happy, productive and dedicated students. Since I have been working with them they have taught me more than I could ever teach them.