Steamboat Springs Editor’s Note: October is National Down Syndrome Awareness Month. This is the third of three articles about families and individuals affected by Down syndrome in Routt County. Articles one and two in the series are available now.
First smile, first steps, first word: Parents eagerly await their babies’ milestones and celebrate each one. My family is no different. We celebrated recently when my youngest son, Lewis, got his first tooth.
The celebration was sweeter because, like most of Lewis’s milestones, we’ve had to wait longer for it.
Lewis has Down syndrome. Among the many surprising facts we have learned since his birth is that teething is often delayed in babies with Down syndrome. Lewis’s first tooth didn’t come in until he was 14 months old, eight months later than his older siblings.
Down syndrome results when an individual has three rather than the usual two copies of the 21st chromosome. It is marked by developmental delays, which means that children with the condition have intellectual disabilities and delays in motor, speech and language skills.
Those delays have taught us not to be in such a hurry, and to celebrate each little achievement. We also have learned that there are many things to be thankful for — and hopeful about — when it comes to raising a child with Down syndrome.
One of those things is early intervention. Part C of the Individuals with Disabilities Education Improvement Act, or IDEA, mandates access to early intervention services for families of children with disabilities. These programs provide help to infants and toddlers who are at risk for developmental delays. In Routt County, early intervention services are provided by Horizons Specialized Services.
“Studies have shown that the earlier you start with kids when they have delays, the more successful they are,” said Kathy Northcutt, Part C Coordinator for Horizons Early Childhood Services. Because Down syndrome usually is diagnosed before or immediately after birth, early intervention can begin right away.
When Lewis was two months old, occupational therapist Jodi Glaisher began coming to our home to work with him. Glaisher’s job is to use play to promote healthy development in children. During the 23 years she has been with Horizons, she has worked with at least nine children with Down syndrome, but she doesn’t view them any differently than other children she works with; she takes each child from where they are as an individual and helps them grow from there.
Her job also involves “finding what motivates a particular child, because sometimes what we’re asking them to do is pretty darn difficult for them,” she said.
The biggest obstacle for infants with Down syndrome usually is low muscle tone, which makes achieving motor milestones like sitting up and walking more difficult. Lewis learned to sit up by himself just before his first birthday and will probably start walking sometime around age 2. Like typically developing kids, however, all children with Down syndrome develop at their own pace.
According to the Linda Crnic Institute for Down Syndrome, improvements in care for children with Down syndrome, including early intervention services, have led to a 20-point increase in average IQ during the past 15 years. What this means for people with Down syndrome is the possibility of greater independence, including the ability to live independently, work and have close relationships.
In the past, babies born with Down syndrome weren’t expected to live long enough to do all these things because of the health problems associated with the condition. Problems such as heart defects, thyroid disorders and childhood leukemia led to a shorter lifespan for people with Down syndrome. This no longer is the case. According to the Mile High Down Syndrome Association, advances in medical care throughout the past three decades have raised the average life expectancy for individuals with Down syndrome from 25 to close to 60 years old.
Steamboat Springs resident Bruce Rule, 49, who has Down syndrome, was diagnosed in his late teens with thyroid problems that required medical treatment. His mother, Maxine Turner, feels that discovery was miraculous, because without it, he probably wouldn’t have lived much longer. Today, thyroid screening is standard care for infants and children with Down syndrome.
Turner has witnessed other changes in the way people with Down syndrome are treated during her son’s lifetime. When Bruce was old enough to start school, his local school district would not accept him because he was not considered “educable,” Turner said.
It was not until the passage of the Education for All Handicapped Children Act in 1975 that public schools were required to provide an education to students such as Bruce.
Lewis will transition from his early intervention program to a BOCES preschool program, and then to public school, which he will attend alongside his typically developing peers.
Lewis is the only infant we know of in Routt County who has Down syndrome, but we have met other young children and their families from Moffat and Grand counties, and — with help from the Mile High Down Syndrome Association — we have joined with those families to form a community support group. The association is working to bring resources available in the Denver metro area to families in rural Colorado. Last spring, for example, the association arranged for Pat Winders, a world-renowned physical therapist and expert in Down syndrome, based at Children’s Hospital, to conduct a free clinic in Steamboat Springs for seven area families.
Lewis’s life surely will have its share of challenges, but with so much support available to him, we have high hopes that it will be a full and happy one. We look forward to all the celebrations along the way.