Parenting a Child With Down Syndrome

When your child has Down syndrome, one of the most useful things you can do is learn as much about it as you can. You might search online for programs and resources to help your child.

Along the way, maybe you talk with other parents whose kids have Down syndrome so you can learn tips and find out what to expect. And, as your child grows, you can work with doctors, therapists, teachers, and other specialists.

Beyond these big-picture tasks, it can also help to know what you can do day to day. Not only to support your child, but to take care of yourself, too.

How to Support Yourself

Every family has their joys, stresses, and challenges, but when you have a child with Down syndrome, things look a little different. Besides juggling school, music lessons, sports, and jobs, you typically have a lot of extra visits with doctors and therapists in the mix.

That makes it even more important to accept help when it’s offered and to pay attention to your own needs. Here are a few ideas:

  • Build a support system. Invite your friends and family to take part in caregiving. They can let you have a little time to yourself to walk, read a book, or just zone out for a while. A break, even a small one, can help you be a better parent and partner.
  • Talk about your challenges. People want to help, but don’t always know how. A simple, “It’s hard to get a healthy dinner on the table with all these appointments,” opens a door and gives them ideas of what they can do.
  • Keep a list of things you need. And don’t be afraid to use it. Next time someone says, “Just let me know how I can help,” you’ll be ready.
  • Find time for friends. Even if it’s just a small moment after the kids go to bed, friends can help you laugh and recharge after a long week.
  • Go easy on yourself. Everyone needs a break. You might also think about seeing a therapist. They can help you work through your feelings and give you tools to handle everyday stresses.
  • Take care of your health. Exercise and eat well, even when you feel burnt out. Try to make a plan and stick to it as best you can.

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Everyday Tips

Like most children, kids with Down syndrome tend to do well with routine. They also respond better to positive support than discipline. Keep both of those things in mind as you try the following tips.

Do all the run-of-the-mill kid things:

  • Give your child chores around the house. Just break them up into small steps and be patient.
  • Have your child play with other kids who do and don’t have Down syndrome.
  • Keep your expectations high as your child tries and learns new things.
  • Make time to play, read, have fun, and go out together.
  • Support your child in doing day-to-day tasks on his own.

For everyday tasks:

  • Create a daily routine and stick to it as best you can. For example, the morning might be “get up / eat breakfast / brush teeth / get dressed.”
  • Help your child change from one activity to the next with very clear signals. For younger kids, seeing a picture or singing a song can help.
  • Use pictures to make a daily schedule your child can see.

To help your child with school, you might:

  • Avoid saying “That’s wrong” to correct mistakes. Instead, say, “Try it again.” Offer help if it’s needed.
  • As you work with doctors, therapists, and teachers, focus on your child’s needs rather than on the condition.
  • Look at what your child is learning at school and see if you can work those lessons into your home life.

When you talk to your child, keep it simple -- the fewer steps, the better. For example, try “Please put your pajamas on,” instead of “OK, it’s time for bed. Let’s get your teeth brushed, face washed, pajamas on, and pick out some books.”

Have your child repeat directions back to you so you know you’ve been understood. Name and talk about things your child seems to get excited about.

Give Your Child Some Control

It’s important for all kids to feel like they have some control over their lives. It’s even more important for kids with Down syndrome, and it’s one way to help them live a fulfilling life. For example, you can:

  • Let your child make choices when it makes sense to. This can be as simple as letting him choose what clothes to wear.
  • Allow him to take reasonable risks. This is a challenge every parent faces. You need to protect your children, but also let them see what they can handle.
  • Support him in solving problems, like how to deal with an issue with friends or approach a problem at school. You don’t have to fix it for them, but help them do it themselves.
WebMD Medical Reference Reviewed by Roy Benaroch, MD on March 19, 2017

Sources

SOURCES:

KidsHealth: “Down Syndrome,” “Support for Parents of Kids with Special Needs.”

Office on Women’s Health: “Parenting a Child with a Disability.”

Mayo Clinic: “Down Syndrome.”

National Down Syndrome Society: “Finding Support.”

Neurological and Physical Abilitation Center: “Helpful Tips for Parents of Children with Down Syndromes.”

Children’s Boston Hospital, The Development Medicine Center: “Behavior and Down Syndrome: A Practical Guide for Parents.”

Down Syndrome Aim High Resource Center: “Tips for Teaching Students with Down Syndrome.”

National Health Service (U.K.): “Down’s Syndrome.”

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