Whether you receive a prenatal diagnosis of Down syndrome or learn of your child’s extra chromosome after birth, you undoubtedly will begin to worry about your child’s future.
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.
Learning to breathe
“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.
- The Down Syndrome Transition Handbook by Jo Ann Simons
- Moving Out: A Family Guide to Residential Planning for Adults with Disabilities by Dafna Krouk-Jordan and Barbara D. Jackins
“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.
Focusing on life skills
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:
- Take your child shopping and provide the green bills to pay for items.
- Let your child choose and buy snacks at the grocery store, then help him understand what he may need to put back if the total is over his limit.
- Start an entertainment budget in high school and help your child figure out how much to spend and how much to have in a stash in case an opportunity comes up.
The adult years
“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.”
A brother’s perspective
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.”
Don’t shy from “group home”
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.”
How to find the right “home”?
Peyton shares her tips:
- Look for how independent living programs are being set up by organizations, families and individuals.
- Think of your child as capable of living apart from you.
- Think of the kind of support that would allow your child to live independently. For example, does your child know how to handle him/herself for one hour home alone, without you? What does it take?
- Start going to look at options that you learn about.
“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:
- Make friends and know your community of other families that share interest in supports for persons with special needs
- Look for a defined organization like a Down syndrome advocacy group — both NDSC and the National Down Syndrome Society can connect families with local affiliates
- Contact The Arc
- Get involved with Special Olympics
“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).”