If any couple in Highlands County knows about the joys and challenges of raising children with Down syndrome, it’s Dawn and Keith Campbell. Keith, a pastor, and Dawn, a stay-at-home mom, have adopted four of these special children, each with their own unique health challenges, and have learned to navigate the complex world of raising kids with special needs.
Down syndrome is a genetic disorder in which abnormal cell division results in extra genetic material in chromosome 21. People with Down syndrome experience mild to moderate intellectual and developmental delays. They have distinctive physical features such as flattened facial features, relatively short fingers, short stature and upward-slanting eyes.
Children and adults with Down syndrome can also have more serious medical problems, something that surprised the Campbells when they first embarked on their adoption journey. After an international adoption fell through, they received calls about a 5-month-old baby boy with Down syndrome who needed a loving home. “I thought, ‘They are always happy and sweet. Sure I’ll adopt a kid with Down syndrome, no problem,’ ” Dawn recalled.
When they arrived at the hospital, however, they discovered that Kaleb, now 6, was suffering from respiratory and cardiac issues. Kaleb had a hole in his heart — heart defects plague about 50 percent of babies born with Down syndrome — and was having trouble breathing because of a “floppy airway,” Dawn said.
The hole in Kaleb’s heart resolved on its own, even though doctors did not expect it to, and the little boy is now healthy and attends the ESE pre-K program at Lake Placid Elementary School where he receives additional physical, occupational and speech therapy. He has had to have his tonsils and adenoids removed, takes allergy medication every day and has an inhaler for asthma, said his mother. He also has a knee brace and, like many kids with his condition, special orthotic foot braces for his feet.
Kaleb also wears glasses, as refractive errors are about twice as common in people with Down syndrome as they are in the general population.
“He walked at 2, which is pretty good for children with Down syndrome,” Dawn said. Now he can read 30 words and rides a Big Wheel. “He’s very outgoing; he’s very sweet,” she said, smiling.
Two of the Campbells’ other adopted Down syndrome children, 6-year-old Ana and 1-year-old Elias, also have respiratory issues and need to have their oxygen levels monitored. Ana, who is severely delayed due to complications from a premature birth, scoots around the tile floor of her home with the aid of a special walker. At night she shares a pulse oximeter machine with her younger brother, since the Campbells’ insurance will not pay for another one. The machine must be switched from one child to the other. “It makes for long nights,” Dawn confessed.
Other medical issues that are common in Down syndrome children are a higher likelihood of contracting infectious diseases, developing leukemia, having gastrointestinal blockages or ear infections and becoming obese. Meadow, 4, was adopted this past summer from China. She had a gastrointestinal problem that was surgically corrected before she came home and is struggling with fluid in her ears but is otherwise healthy and is busy bonding with her new family and exploring all of the electronic devices she can get her hands on.
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Children born with Down syndrome benefit from early intervention that helps develop sensory, motor and cognitive abilities.
Jamie Stayer, a pre-K ESE teacher at Lake Placid Elementary School, is also the adoptive mother of a child with Down syndrome, 5-year-old Sammy. Like Sammy and Kaleb, her students benefit from the stimulation the pre-K program provides as well as work with specialized therapists for speech, gross motor and fine motor skills.
Stayer has also worked as an infant/toddler development specialist for the Early Steps program, a government-run intervention program that helps identify and provide services to children ages 3 and under who have developmental delays or who may develop delays. With Early Steps, babies and toddlers with Down syndrome begin to receive developmental help right away in their homes, and their parents learn important information about maximizing the potential of their special children.
Sammy receives part-time private physical therapy in Lake Placid, wears hearing aids and is working on his balance since he’s not quite got running down yet, his mom said. As she spoke, Sammy ran over to give her a big hug and then urged her to come and see what he had been doing with a “Come on, mom!”
“He’s just really starting to say two and three words. He’s always been very good at communicating,” Stayer said, who said he also uses sign language to communicate with her and her husband, Bruce.
While their children receive good pediatric care and some of their therapies in-county, these mothers said they have to travel for specialized medical care. Stayer takes Sammy to Hope Haven in Jacksonville every year where he receives a comprehensive assessment. Dawn takes her children to All Children’s Hospital in St. Petersburg for cardiac and respiratory care.
The county is lacking in support groups as well. Holly Cameron, mother of 3-year-old Breyten, who also has Down syndrome, regularly travels to Sarasota to meet with other parents at a support group called Manasota BUDS (Bringing Up Down Syndrome). She and her husband, Joshua, are opening up a special-needs-friendly indoor play place at 381 E. Interlake Blvd. in Lake Placid as well as launching a local Manasota BUDS group in Highlands County.
Despite their challenges, the future is bright for Down syndrome children. Many of them will live a full life, go to a regular school, learn to read and write, get a job and be able to live with their families or independently.
“There are varying outcomes for Down syndrome,” Stayer said, adding that she sees her son eventually wanting to be as independent as he can be.
For now, Dawn said she is learning to enjoy “the little things,” the accomplishments that may seem small to others, but are big steps in her children’s development. It’s hard sometimes when her family is in public, especially with gregarious Kaleb, who likes to reach out to strangers. Dawn encourages the community to respond to these kids like they would to any child who did not have a disability.
“I have children with Down syndrome, not Down syndrome children,” Dawn said. “Down syndrome does not define my children.”
For information on the local support group, contact Dawn at (863) 465-6800.