What to Expect When Your Child Has Down Syndrome

Sue and John immediately talked to their doctor and enrolled Marc in an infant stimulation course to help with his muscle tone. He began at the age of 6 weeks. "In Marc's case it was important for him to get early intervention and extra work on his muscles," Sue says.

Some Down syndrome children might need extra care, such as infant stimulation, speech therapy, physiotherapy, and tutoring when they attend school. But Rachael says that no matter what, parents will do the best they can with their children and love the child with Down syndrome just like any other.

"Patience, above anything else," Rachael says. "Whatever patience I had to have when my oldest daughter asked me a million questions, I had to have double that when it came to dealing with my daughter with Down syndrome. It isn't just patience because they learn a bit slower, because she's always on the move and she pushes boundaries much more than my older daughter does. I know she's had some medical problems, but there are lots of families that have children with allergies, disabilities, or some other medical ailment."

Individuals with Down syndrome vary in their mental abilities. "Children with Down syndrome follow similar developmental pathways compared to other children; they just follow at a slower pace in most cases," Dr. Cooley says. "The same toys that stimulate curiosity, attention, problem solving, humor, and imagination that parents would provide any child are equally important to children with Down syndrome."

"You can't predict what level your child will reach," Sue says. "Just like with 'normal' children, when they're babies and toddlers, you can't predict who'll be diagnosed with attention deficit disorder, dyslexia, or who'll have behavioral problems. We just don't know. It's important for parents with children with Down syndrome to set high expectations, just like any other child would have. If you set low and easy expectations, your child will be content and do the minimum to attain that level. If you set your expectations higher, you're giving your child a realistic goal, in a realistic world."

"Don't ever let anyone tell you how you should raise your child," Rachael says. "Don't ever let anyone make you feel less adequate because of your child. No matter how much time it may take for your child to learn something, you will find that in the end you have learned much more."

Finding Support

"Fortunately, in every state, children with Down syndrome and their families are eligible for early intervention services, allowing contact with an array of early childhood professionals providing ongoing advice about therapy, play, toys, and other helpful activities," Dr. Cooley says. "It is important to remember that this child has an extra chromosome, but all of the chromosomes containing the family's genetic heritage are normal and operational."

And parents will be parents. "We are always happy to 'brag' about our kids and enlighten others," Sue says. "All our children."

"Being a parent of a child with Down syndrome is to be inspired and blessed," Rachael says. "Don't let anyone tell you different, and don't ever doubt it."

*Names have been changed to protect privacy.