Worrying comes naturally for all parents, but for parents of children born with Down syndrome, stress can be magnified by the unknown. No test exists to predict how highly functioning your child may become.
Of course, the truth is that everyone’s future is unknown, but parents and loved ones can do so much to prepare for children with disabilities to transition to a life of independence.
"When [my son] Jack was born I could not stop focusing and crying about the possibility of heart surgery, leukemia, bullying and every other fear known to mankind," shares Bridget Murphy.
"My husband asked me to agree to wait until the heart surgery, leukemia and bullying actually happened before I fell apart. He agreed to fall apart with me, he just didn't want to until the time came. We are still waiting for heart surgery, leukemia and bullying to occur."
Today, Jack is a student at a major university and was voted the Outstanding First Year Student, a vote that came from the entire campus including faculty and staff.
The veteran moms who spoke with SheKnows for this article emphasized the importance of treating a child with Down syndrome just as any parent would treat his or her typically developing children. From daily hygiene routines to learning to create a healthy meal to knowing how to do laundry, everyday life skills are essential to reaching a goal of independence.
Bridget's biggest regret is not teaching Jack about money at an earlier age. She lists simple lessons parents can introduce:
"Transitioning to adult lives takes time for all young people," points out Susanna Peyton, whose eldest son has Down syndrome and now lives independently with several other friends. "Let them try things and don't be too discouraged if they fail. Yet don't set them up to fail with unrealistic expectations."
Eve Isling has three boys. Her youngest, Matthew, is 23 and has Down syndrome. He works part-time at a job that brings him joy and keeps him active. Eve's advice for parents is simple. "Continue to seek your child's happiness and follow what you know about them," she shares. "There are many good professionals, teachers, etc. out there, but there is no one like you… . Do not be afraid to try things, but also do not hesitate to pull back if your child isn't ready."
"The uniqueness and wonderfulness of your child is something that you are best qualified to oversee."
Matthew's oldest brother Jonathan, 26, talks about his own worries about Matty's future. "I was afraid that most jobs available to people with Down syndrome would be too monotonous and boring to keep Matty’s attention all day long," he shares. "I was also afraid that this new phase of life would leave our family with a never-ending question of, 'What can we do to make life meaningful for Matthew?'"
"We never lost hope that there would be something for Matty to do after school. One of the most important lessons you learn when you have a loved one with Down syndrome is that they have an important place in society."
"Thanks to the resilience of my parents, Matthew's other caretakers, and friends and family, Matty is living a life of scheduled activity, part-time employment and all-important free time."
Peyton acknowledges that some group homes can be "cheerless, unsupported places, with persons living in them who have no family to speak of." But she insists parents should never give up looking at options to attain independence.
"There are newer, greater 'group living' options out there now, too," she says. "Our supported living arrangement feels more like a beautiful household of friends."
Peyton shares her tips:
"We really like to focus on the individual and helping families determine what the right options are for each person," says Sue Joe, communications director for NDSC. "So, we encourage families to contact the NDSC (by email, phone) with their individual questions, so we can talk through their situation and give suggestions. Sadly, people just aren’t aware of the possibilities out there."
Peyton offers additional resources:
"These communities provide a lot of ideas and interests as your child grows," Peyton says. Above all, she advises taking a step back from the daily rigmarole of therapies and arranged activities.
"Enjoy the character and the strengths your very own kid has in his/her self," she says. "Don't feel you have to teach every moment of the day. Find out, slowly, how to listen to what is important to your child too, because when they are a young adult that is something that really helps to working toward independence that is tailored to their enjoyment and goals (not yours)."
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