When you think about raising a child with Down syndrome, what first comes to mind? If the thought startles you, it’s safe to say you’re not the only one. How many times have you heard a pregnant woman say she doesn’t care if she has a boy or girl, as long as the baby is healthy?
Research, however, shows that parents raising a child with Down syndrome experience joy and satisfaction. Nearly 4 in 5 parents of children with Down syndrome report a more positive outlook on life as a result, according to a study from the American Journal of Medical Genetics. And 94 percent of siblings said they are proud of their brothers and sisters with Down syndrome.
If you are a parent raising a child with Down syndrome, you are not alone. Each year, one in every 691 babies born in the United States is born with Down syndrome, the most common chromosomal condition. These babies are born to parents of all races and economic levels. Improved support systems have eased the burden on families. Today, many children with Down syndrome are graduating from high school, are employed and living independently. Life expectancy has risen from 25 years old in 1983 to 60 today.
What hasn’t changed is the fact that parents are the most influential factor in the development of children born with Down syndrome. If you have a child with Down syndrome, medical professionals, educators and other specialists will certainly be a part of your lives, but you make the biggest difference in your child’s development and ability to achieve independence.
The unanswerable: Why was your child born with Down syndrome?
No one can provide a specific answer. We do know that rate of incidence rises with the age of the mother. The disorder was first identified by Dr. John Langdon Down and occurs when an individual has a full or partial extra copy of chromosome 21. Children with Down syndrome usually have varying degrees of low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Facing cognitive delays, they are also at increased risk for certain medical conditions. However, many are productive members of society, living normal, healthy lives.
Lots of love: How do your raise your child with Down syndrome?
The same way you would raise any child: with love, patience, compassion, positive instruction — and adjustments that accommodate your child’s special needs. Love them, play with them, encourage them, read to them and take them on social outings. Set developmentally appropriate expectations for their abilities. If possible, your child should eat and dress independently, be physically active, help with household tasks, participate in social activities and spend time with friends.
Keep communication simple. Give directions one or two steps at a time and have your child repeat the instruction back. Allow your child to make reasonable choices growing up and learn from them. Help your child work through problems instead of jumping in to fix everything.
Find a support system for yourself. Allow friends and family to help when they offer. Make time for yourself and take care of yourself to stay healthy. Use available resources like the parental support provided by the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress. Search “Down syndrome” on social media to connect with parents in similar situations or join a group in your community.
Be your child’s health care advocate, following the medical recommendations set for children with Down syndrome. Guidelines are different for routine tests, there are specialized growth charts as well as recommended schedules for appointments with physicians and other specialists. NDSS provides checklists for physician visits, overall health care guidelines and other medical intervention and support resources. Your child will need regular overall health check-ups, as well as specific appointments for vision and hearing as well as social and emotional development. Prepare your child for tests and exams by explaining the reason for each appointment and by outlining what will happen there.
Children with Down syndrome are subject to certain medical conditions that can be of more immediate concern. Call your doctor immediately in cases of:
- Severe belly pain, vomiting and possible stomach swelling
- Bluish discoloration of lips and fingers
- Difficulty breathing
- Sudden changes in eating or activity levels
- Neck pain or limited neck movement
- Weakness in the arms and legs, difficulty walking
- Changes in bowel or bladder control
- Potential mental heath issues, including no longer doing things that had been enjoyable, withdrawing from family and friends, extreme anxiety or depression
Support from day one: Birth through preschool
Your role in preparing your child for life’s extra challenges begins in baby’s infancy. Immediately start to develop a system that provides you reliable information and a health history to present to specialists and teachers who will become part of your child’s care growing up. Track chronic health problems, treatments and education records.
Enroll your child (infant through age 3) in an early-intervention program. Ask your doctor to find out where programs are offered in your area. Build strength in your growing baby and then toddler by engaging in directed play and movement. A physical therapist can be a valuable resource for specific exercises to help increase muscle strength and skills early in your child’s life.
Establish a routine — regular, consistent times for baths, naps and meals, for example. All children do better with a schedule and children with Down syndrome are no exception. Encourage your child to try to eat and dress independently as much as possible and complete other tasks with your encouragement.
Low muscle tone and other factors cause delayed speech in many children with Down syndrome. Look at your baby when speaking. Repeat the names of objects you show your baby. Sign language can be an excellent way to communicate, reducing frustration for parent and child. For infants and toddlers, baby sign language books, websites and videos are helpful and easily available. Because eating and speaking use the same muscles, feeding therapy and speech therapy may be recommended.
Begin preparing your child for school with organized activities and programs such as children’s reading groups at the library, community art classes for kids, neighborhood play groups and other activities geared toward preschool ages. Setting up play dates in your home with other children of the same age is good for social skills development and a chance for you to observe your child’s interactions.
Become your child’s champion advocate. The Individual with Disabilities Education Improvement Act (IDEA) is a federal law requiring public schools to provide appropriate educational services for all children with disabilities between ages 3 and 21. It also protects your rights as a parent. Some states offer services beginning at birth. Research what your state’s IDEA program covers and what services are available in your community.
Yes, your child may not progress at the same speed as the child next door. Be patient and encouraging. Enjoy that parental swell of pride every time a milestone is reached!
Getting the most out of the classroom: Elementary school
Like all parents, you will be amazed at how fast those first years go by. Now it’s time to send your vulnerable child to school. Take comfort in the fact that significant strides have been made in educating children with disabilities. You will work closely with your child’s teacher and the school staff to develop an Individualized Education Program (IEP). The IEP sets goals agreed upon by parents and teachers and establishes necessary additional child services. Today, most children with special needs are placed in a traditional classroom.
Keeping a daily routine continues to be important for the school-age child. Your child will not instinctively know how to adjust self-care. At appropriate times, you need to talk about bathing daily, using deodorant and other personal hygiene habits. Children with Down syndrome often have problems maintaining proper weight, making good personal hygiene more challenging.
Being overweight, poor muscle coordination and other physical barriers contribute to children with disabilities avoiding physical activity. Find sports or activities your child can do despite limitations. Look into programs like Special Olympics, which is designed for children with disabilities.
Try to get to know your child’s classmates and their parents. Play dates become even more important at this age, continuing to give you a chance to observe your child’s developing socialization skills. Show appreciation when your child is included in invitations. Use your interactions with parents and classmates to explain Down syndrome and its effects. By educating families about your child’s disability, you improve understanding and acceptance.
Change, change, change: Adolescence and teen years
During adolescence and the teen years — again, like all parents — you will face many new challenges and rewards. Adolescents with Down syndrome have the same needs as others at their age. Your child will want to hang out with friends a lot, date and participate in social situations. Peer acceptance becomes crucial to self-esteem.
Though your guidance may not be as welcome as before, it’s more necessary than ever because your child is more vulnerable. Have honest talks about healthy, age-appropriate relationships. Share why it’s important to say no to unhealthy advances. Teach the importance of respect for one’s body and the bodies of others. Provide education on sex, drug use and other social interactions likely to be introduced at this age. Teens may be more willing to talk about sensitive topics alone with their doctor than they are with you. Give them that opportunity.
Good hygiene becomes more of a factor in social acceptance. Help your child develop a plan and routine for practices such as hair care, nail clipping, showering at school, planning for menstrual cycles, etc. You may need to assist your adolescent with some tasks, such as beginning to shave or treating acne problems.
During your child’s teen years, prepare for the future. Vocational training, work experiences at local businesses and other high school activities can provide your child a path to independence. Look into future living arrangements. Again, utilize professional resources to help assess your child’s capabilities and determine what type of future is realistic.
According to NDSS, “Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives. They attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways.”