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From Chapter 5, Family Life with Your Baby
Being the Parent of a Baby with Down Syndrome
Before the birth of your baby, you may have imagined that child-rearing would come naturally. But the parent of a baby with Down syndrome faces unique challenges, and you may doubt your ability to meet your child's "special" needs. You may ask yourself, "How can I feed this baby who struggles so much when he is being fed? Will I have to do special exercises to teach him to walk? Will he ever talk and will we understand what he says?” You may wonder how this baby can ever be a part of your family if you are coping with these kinds of worries about the future.
All parents face worries and conflicting emotions in the early stages of their baby's life. Like parents with Down syndrome, they worry about colic, feeding schedules, rashes, colds, and countless other details of child care. They soon learn to depend on love, acceptance, and discipline as the staples of good parenting. You will undoubtedly depend on these also in raising your child. Although this section focuses on those areas of family life that are different because your child has Down syndrome, the goal for you is the same as for all families: integrating your child into your growing family as a valued, contributing member.
You may turn to your family and friends for help in meeting the challenge of bringing up your child. Also remember that your child's teacher and other professionals can be a tremendous source of support for you. The parent-professional partnership, which is discussed in Chapter 7, can be a great source of practical information on coping. Just having someone you can ask about problems or questions makes your daily work easier. Nagging uncertainties, worries, and questions can be dealt with quickly. More importantly, the advice of teachers and other professionals is based on the collective experience of many children and families. As a result, this advice can be very useful in offering you options for dealing with your own problems and worries.
Becoming Part of the Family
Right from the start, you should expect that your baby with Down syndrome will be a part of your family, not the center of it. Just because your child has a disability does not mean he should dominate family life. This is not good for your baby or for the rest of the family. Your baby does have special needs and he will demand emotional and physical resources that other children might not demand. But remember, your goal is to balance all the competing demands so that everyone in the family can be an equal and contributing member. This is the same challenge that all parents face, whether they have a child with disabilities or not.
The relationship of each family member with the child was Down syndrome will be a reflection of your attitudes as parents. If you hold and cuddle and love your baby, if you voice your feelings of affection, if you face challenges in a positive manner, then other family members will too.
As you begin the task of integrating your baby and his disability into your lives, you and all of your family will grow to love your baby more and more. That love will be your strongest ally, your strongest bond. Through patience and understanding, your child can be a loved and loving member of your family.
In addition to a supportive environment, it is essential that your children have information. Leaving things unsaid will only send a confused and troubling message to your children. Tell them that their sibling has Down syndrome as soon as think they are ready. Explain it on a level they can understand, and give them more information as they get older. Children have ability to love their brother or sister unconditionally. You will be surprised at how much they understand and how easily they accept what many adults receive with shock and sadness.
If you accept your child with Down syndrome and are comfortable with him, he will fit into your family and your lifestyle. Your child will enjoy family mealtimes, outings, and going to school with other children. Your child will probably be able to receive some, if not most of his education in a school where he is included in a regular classroom with typically developing children. This can allow your child to learn from the example of the children in his regular classes. Working to make your child as much a part of the “normal” world in his school and in your family life will help him tremendously. And the benefits of this are twofold. Not only will it help your child, but it will also help others in your child's world become more familiar and more comfortable with people with Down syndrome.
Take your child to the swimming pool, to the grocery store, to restaurants. Often the promise of “going out for spaghetti” can make a day go better, and the meal can be a special time for the entire family. Make sure your child participates in a variety of community activities. Find things that he likes and can participate in with other children.
The medical problems that some babies with Down syndrome have can add to the stress a family experiences. Although the goal is to make your child an integral part of your family, medical needs may make this difficult at times. Parents sometimes need to focus their attention just on their child Down syndrome. This is not unreasonable. It can happen in any family when a child is sick or has a special problem. Remember to let your children be involved with their sibling. Encourage them to make hospital visits and to express their feelings. Above all, keep them informed. They will be concerned and will want to help.
Love and Acceptance
The birth of a baby with Down syndrome comes as a shock to most parents. In addition to the feelings of love and protection they have for their new baby, many parents also feel sad and disappointed. These mixed feelings toward the baby often continue as the child grows. Do not hesitate to recognize these feelings within yourself and accept them without feeling quality about them. No parent feels good about their child all the time.
Get to know your baby. Learn more about Down syndrome. Initially, you may be afraid to love your baby because you know so little about him his condition. The closer you get to him, the more at ease you will become.
Today you can develop a relationship with your baby with confidence. Bolstered by the guidance and support of informed professionals, community support groups, and family and friends, you can provide an environment in which your child can grow to be a unique individual supported by your love.
Some parents feel that they cannot keep their baby with Down syndrome at home. One alternative is to place the child for adoption. There are agencies with waiting lists of people who specifically want to adopt a baby with Down syndrome. The Down Syndrome Association of Greater Cincinnati also operates an Adoption Awareness program that can help prospective adoptive parents locate a child Down syndrome (see the Resource Guide). Foster homes are also a viable alternative because children with Down syndrome benefit most from family life.
Babies with Down syndrome are born with a variety of physical and intellectual abilities. As chapter 6 discusses, these abilities are often different from those of other children, but it is not possible to predict any child's full potential at an early age. At this point in your baby's life, do not set limits on what he will or will not be able to do. Strive for that delicate balance between a realistic assessment of your child's development and the self-fulfilling prophecy of low achievement. Most of all, ensure that your child will lead a happy and useful life by providing appropriate support and training from an early age.
Parents spend more time with their young children than anyone else does, and their expectations can affect their children in tangible ways. For example, if you do not expect your child with Down syndrome to dress himself, he may not. Perhaps you unwittingly have not given him the chance. You may dress and undress him or simply help him too much because your expectations are too low.
Do not form your expectations in a vacuum and do not base them on stereotypes. Talk to doctors, teachers, therapists, and other parents of children with Down syndrome. Read current books and journals and attend seminars and conferences to keep abreast of the latest research. It takes information and exposure to realistically set your expectations. More importantly, try not to look too far into the future. Focus on the next developmental skill; set short-term goals. After all, the future is made up of what your child learns along the way.