Caring for a Child with Down Syndrome

It is normal to go through a painful period of adjustment upon learning that your child has any special need. Here are some guidelines that may be helpful:

• Grieve the loss of the child you expected or dreamed about and begin to develop new dreams for the child you have.
• Recognize your child's strengths, as well as his limitations.
• Educate yourself about your child's condition.
• Focus on helping your child to be "the best he can be." Avoid comparing your child with others.
• Seek help for emotional issues, in find a caring health care provider, and in creating a therapeutic and educational program that meets your child's needs.
• In addition to health care professionals and various therapists, other parents in your situation may be wonderful resources, either through providing one-on-one support, in support groups, or through personal stories that many have written about their adjustments and coping strategies.

Here are some pointers from one parent:

• Love your child as you would any other. Focus first on the fact that this is your child, and then on the special need.
• Children with Down syndrome often are affectionate and joyous. Learn from them how to enjoy life.
• Don't underestimate your child's potential. Don't set any upper limits, and you may be surprised.
• Play with your child.
• Get therapy -- speech, occupational, physical and educational -- as soon as possible.
• Make sure your child's school follows her IEP (Individualized Educational Program). This means staying on top of the situation and becoming a strong advocate for your child.
• Check that the educational material challenges your child, and that the process of doing the work and taking the tests is adapted to your child's learning style. For example, one child who couldn't comprehend the difference between true and false could choose the correct answer when the question was worded differently.
• Integrate your child into the community as much as possible.
• Follow through if your pediatrician recommends that your child see medical specialists.
• Create positive experiences for your child in many different environments and with many different people.
• Say your child's name often, especially when you are giving praise.
• When professionals come to your home to work with your child, learn as much as you can from them. Find out about other resources that would be helpful and ways you can implement some of the things they do to challenge your child.
• Create an environment that suits your child's needs and abilities. Encourage movement and exploration.
• Encourage your child to play with toys of different sizes and textures.
• Accept that your child will develop at her own speed and in her own way.
• Understand that you may have to repeat an activity many times before she can do it well.

Many have these strengths:

• Friendliness
• Visual attentiveness
• Kindness
• Generosity
• Ability to get along with others

Here are some suggestions:

• Be patient. Many babies with Down syndrome take longer to feed due to problems with muscle tone and a protruding tongue.
• Some babies have trouble coordinating their sucking, swallowing and breathing, and with maintaining a seal. Gently push your child's chin up to help him nurse.
• Make sure your baby is fully awake when feeding. Some babies have trouble eating because they are sleepy. They need to be fully awakened before eating so they will focus on the task.

One significant advantage to nursing babies with Down syndrome is that it seems to prevent constipation -- a common side effect of poor muscle tone. La Leche League claims that breastfeeding also helps babies with Down syndrome improve mouth and tongue coordination.

Babies with disabilities are entitled to receive "Early Intervention" services from birth to age 3. Early Intervention is given by a team of experts who help children develop to their maximum ability. The idea is to intervene as soon as possible, while the brain and body are rapidly growing. After age 3, states must provide Special Education services. You can receive services from either public or private sources. Contact your state's Department of Health or Education to obtain public services. Private services may be covered by health insurance. It is important to know that the Early Intervention program you choose can be changed if you decide a better program is available.

One mother reported that pre-kindergarten Early Intervention programs helped her child develop motor, language and social skills. Her child, now a teenager, had specifically benefited from these interventions:

• Physical therapy on a weekly basis helped her infant build up muscle tone and coordination, and later helped her baby learn to roll over, sit up and talk.
• Occupational therapy, when her child was a little older, helped with feeding, social skills, hand-eye coordination, and speech.
• Speech therapy helped with feeding, social skills, hand-eye coordination, and speech. When their child entered a regular preschool, her family gave up the speech therapy after finding she learned more from interacting with other children than from her therapist.
• Hippotherapy (horseback riding) helped greatly with balance and was also fun.
• Educational therapy (tutoring) helped also.
• Gradually, this family replaced physical therapy, which their child disliked, with dance class, which helped integrate her into the community. She began with ballet, jazz and tap. Ultimately, she had to drop the tap because it was too difficult to move quickly enough, but she continues to enjoy ballet.
• This child also played some sports with other kids when she was young, such as t-ball and soccer (for socialization, but she stopped when the leagues became too competitive).

The Individuals with Disabilities Education Act (IDEA) requires an Individualized Family Service Plan (IFSP) be completed by either a state or local government agency for every child eligible for Early Intervention services. The IFSP will list your child's strengths and needs, your family's resources and concerns, and the services the state will provide. The services your child receives must be outlined in the IFSP. The document will be reviewed every six months and must also include family services such as:

• Helping parents learn how to teach their child with Down syndrome
• Helping children learn to cope with their disabled sibling

As soon as your child is diagnosed with Down syndrome, you can contact an Early Intervention program in your area. You can find information about Early Intervention programs through your doctor, your school district, your state and county health or education departments, other parents of children with Down syndrome, or a local chapter of The Arc (an advocacy organization for people with developmental disabilities). Once you have contacted an Early Intervention program, a preliminary evaluation of your baby should be done and this should provide you with initial recommendations. This can be of great help when it is time to complete the IFSP.

Your role is very significant. You are now the prime advocate for your child, which may be a new experience for you. While you are learning about Down syndrome (and perhaps even how to be a parent) for the first time, you will also learn how to choose and advocate for the best services for your child. Even though you will be dealing with a lot of experts, your position as parent makes you the best person to assess which services are helpful for your child. It is important to know that you can change the Early Intervention program you have selected if you find a better one. You are in charge.

Here are a few tips that may make your role easier:

• Keep copies of everything, and make sure the therapist gives you notes after each visit. Organize these into folders. These notes will help you assess whether or not your child's development is progressing based on that therapist's help.
• Keep a written record of every question you have for a therapist and that person's answers.
• The therapist's job is to help your family. She should fully answer all your questions clearly.

Since some children with Down syndrome have serious speech delays, and since most are visual learners, some people choose to teach their children sign language so that they can communicate that way until they develop more speech skills. Each case is different and you, with the help of the support team you have assembled, will have to assess if that is the best approach for your child.

Some parents of children with Down syndrome believe that their children do worse when they eat diets high in sugar, additives and preservatives. When they avoid these, and use natural foods, they believe, their children do better and stay healthier. Some doctors recommend nutritional supplements; others recommend avoiding mucous-producing foods, such as milk, if children have frequent ear infections.

Everyone is different, and children with Down syndrome vary greatly in their abilities, but here are some examples of learning difficulties some children with Down syndrome have:

• Difficulty translating knowledge from the brain to the spoken word.
• Ability to pick out words but trouble reading them aloud.
• Limited fine motor skills that hamper ability to write words, although able to type them into a computer.
• Ability to comprehend many words but difficulty remembering and then vocalizing them.
• Difficulty learning to read.

Children with Down syndrome are usually very friendly. However:

• Kids with Down syndrome can feel socially isolated due to their differences.
• Most are socially immature and find it difficult to keep up with other children their age physically, emotionally and cognitively.
• Relationships with kids who don't have Down syndrome are often lopsided, not equal, as the kids with Down syndrome want more from the friendships than the other kids do. Meeting other kids with Down syndrome who are at their level of the spectrum may enable equal friendships.

Certainly kids in the more advanced half of the spectrum are aware of their differences.

• Awareness can lead to insecurity.
• One child who was mainstreamed would only answer a question if she were sure she was correct.
• That child also refused to read aloud in class after once having a difficult time with it.
• Similarly, that child refuses to participate in timed running tests in gym as she is aware that she is much slower than the other children.

Certainly, family life will be impacted in many ways.

• Everything is slower with a child with Down syndrome. More time and energy are spent on that child's needs, which means that parents have less time for others.
• Feeling "different" when out in the world can make families reluctant to do things other families do. Some families resent stares; others become accustomed to them.
• In some families, siblings resent the fact that the child with Down syndrome gets more attention.
• Some siblings are teased about their "retarded" sibling.
• On the positive side, siblings may become more sensitive to others and less self-centered than they otherwise would have been. Studies of families of children with Down syndromes have found that the siblings tend to be more mature than other kids their age, more accepting of differences and more understanding of the difficulties others may be having -- in general, more empathic.
• Some families do well; others do not.

Here are some tips:

• Give your other children permission to express all of their feelings, positive and negative, about your family's situation. Then acknowledge all the feelings as a way to give your child permission to feel them.
• Don't give your other children too much responsibility for their siblings with Down syndrome. They can be helpful, but don't overburden them.
• Pay attention to the moods of all of your children. If you notice any changes, specifically that they are anxious or depressed, be sure to get that child help as quickly as possible.
• Pay attention to what is important to each of your children, and try to spend individual time with each one regularly.

Here are some suggestions:

• Schedule time to be alone with your spouse -- whether going out for an evening or taking a vacation alone together.
• Express appreciation for all the things your spouse is doing to hold the family together. Do this on an ongoing basis.
• Make time every day to talk to your spouse privately.
• Be sure to celebrate anniversaries, birthdays and special moments.

It can be complicated to figure out what is causing symptoms that seem like behavioral problems.

• Sometimes kids with Down syndrome have trouble hearing or comprehending. When they fail to follow directions, it may be due to trouble hearing rather than to intentional disobedience. Or, frustration over an inability to comprehend something may cause a child to become disruptive. It's important to identify the trigger so that you can decide how best to intervene.
• When assessing whether behavior is appropriate, it's helpful to figure out a child's developmental as opposed to chronological age. Chronologically older kids may have temper tantrums that are actually appropriate for their developmental age.
• Behavior that looks like ADD and an inability to concentrate may instead be the result of hearing problems, vision problems, thyroid problems, sleep disorders, gastrointestinal problems, anxiety over inability to keep up, frustration over inability to comprehend, or irritation at being misunderstood.

How to respond to inappropriate behavior:

• Have your child's hearing checked first to rule that out.
• Have the doctor check for other medical issues, such as sleep problems, which can then cause behavioral ones.
• Find out the specific circumstances that led to the behavior.
• Devise a plan that will avoid a repetition of those particular circumstances.

Here are some things you can do that should help.

• Install good locks and door alarms at home.
• Put STOP signs on the doors to remind your children they shouldn't go out without permission.
• Encourage your other children to ask permission before they go out, modeling this behavior for your child with Down syndrome.
• At your child's school, have a protocol written into the IEP that clarifies what each person should do in case your child leaves the classroom or playground.

Kids with Down syndrome do experience a high rate of depression, possibly because of:

• Social problems.
• The experience of not fitting in.
• The loss of a family member with whom they had been close.

There are special camps for kids with Down syndrome. Look into what is available and see if there is one that you and your daughter feel comfortable with.

The answer depends on where in the spectrum you child falls.

• Many adults with Down syndrome live in group homes or apartments with support services. However, they usually must be able to eat, dress and bathe themselves in order to be accepted in these living situations.
• Many adults with Down syndrome work outside the home and have a social life. Their work can be "sheltered" (in workplaces with other disabled adults) or "supported," such as a cashier or bagger at a grocery store whose work is more closely monitored than that of other employees. For a supported job, a job coach can accompany the person to the workplace and help teach the necessary job skills so that the person can then work more independently. That job coach can then return to assess the situation or to help if new assignments are received.
• Some may participate in a post-secondary education program at a community college or other college.
• Some may participate in vocational or training programs that may involve an apprenticeship or trade school.
• Those who are not able to live independently or work may go to adult day care or continue to live with their parents.
• Some may choose to participate in the Special Olympics and other activities that emphasize exercise.
• Some may pursue interests, such as art, drawing or photography.
• Some marry. Strong Love is a documentary on the topic.
• No matter where on the spectrum your child falls, someone will have to monitor your child and funds must be set aside to pay for this care after you and your spouse die. A reliable person must be appointed to oversee the funds and make sure they are truly spent on meeting your child's needs.

  It will be important for your child to be able to:

• Get to work, and to do so on time.
• Cooperate with others at work.
• Behave appropriately at work, in terms of dress, attitude and lunch and break times.
• Follow directions, adhere to expected procedures, and accept supervision.
• Use public transportation
• Manage money.
• Responsibly shop for food and clothes.
• Use good judgment with strangers and out in traffic and in public.
• Be able to seek help if necessary
• Prepare meals and plan in advance to have appropriate food for doing so.
• Keep the house clean and clean up after preparing meals.
• Keep himself and his clothes clean
• Manage free time in appropriate ways that make him happy and respect others.
• Make appointments, whether for care or to socialize, and remember to keep them.

For information on how to arrange future care plans, what to do when your child with special needs lives independently, choosing doctors, life after high school, trusts, and arranging guardians or conservators, see the Care.com Caregiver Guide for Special Needs article on Future Concerns: When A Child Turns 22.

 

Many parents find it useful to join support groups that provide both information and understanding. These groups often offer support for other family members, too, Such as grandparents and aunts or uncles. Becoming involved in educational activities through playgroups or early intervention programs can also be a source of support.

To find parent support groups in your area, contact:

• The Arc
• National Association for Down Syndrome
• National Down Syndrome Society
• Some families find attending the National Down Syndrome Congress to be very helpful
• Easter Seals.