Whose advice should we listen to?
As with the birth of any baby, well meaning people will offer you all sorts of different advice. This can be rather confusing. Listen to those who have personal experience in dealing with children and people with Down syndrome and who recognise the needs of your baby. Do not hesitate to ask questions as this would help you to move towards acceptance of your baby. Your clinic sister and doctor and your local Down Syndrome Association (DSA) will help you care for your baby’s health and will bring you in touch with a parent group, early stimulation center or social worker to help you cope. You have the right to choose the support system you feel most comfortable with. If you would like more information on or further explanations of Down syndrome, you should feel free to contact one of the genetic nurses in your region or your nearest DSA.
How can we cope with our feelings?
There is, of course, no easy answer to this. You will need time to accept that your baby is different from others. Remember that you are not alone. Many other parents have shared your shock, pain, anger, disappointment and bewilderment. Many have found within themselves unsuspected reserves of courage and faith to meet the challenge. Most parents benefit greatly in contacting other parents of a child with Down syndrome who share their interest and concerns. Each person reacts differently in a crisis situation. You will probably experience the following range of feelings at one stage or another; sorrow, rejection, grief, denial, disbelief, disappointment, anxiety, anger and guilt. These are all normal feelings and reactions. Try not to plan your baby’s future too far ahead. This is not practically possible with any baby. Live one day at a time and deal with each problem and stage as it arises. Try never to be so burdened with work or grief that you cannot enjoy the fact that your baby is a unique, wonderful little person with a great deal to share with you.
How do we tell our family and friends about our child with Down syndrome?
Inform yourself as fully as you can about Down syndrome by reading and through discussion, but keep your explanations to your children, family and friends simple and straightforward. Tell everyone concerned as soon as possible. The longer you wait, the more difficult and awkward it will become. An example of a simple explanation you could give to older family members and friends is: “Our child has Down syndrome. It is a chromosomal disorder and he will be a child with a disability.” You could tell your children about the baby in the following way: “He is a baby with Down syndrome. He will learn and develop much the same as any other baby, only slower. We will have to repeat things often to him and be patient. Oh yes! The baby will smile, laugh and play and even be naughty sometimes. In the meantime we can love our new baby and play with him a lot.” Always remember that people tend to take your behaviour, reactions and attitudes as an indication of how they should react to you. Using the correct terminology will be showing that you value your child. A child is not a “Down’s child” or a “Downsie” or a “Down syndrome”, but is first and foremost a child, boy, girl, teenager, etc and secondly happen to have Down syndrome. Therefore you can set the example to your family and friends in using person first terminology. Speaking about a child / boy / girl / with Down syndrome is a good habit which does not give labels to people.
THINK OF ME FIRST AS A PERSON
You look at me first with pity, concern or indifference,
For I am a disabled child
But you see only the outside of me.
If I could express myself,
I would tell you that I am inside
I am very much like you!
Think of me first as a person,
Who hurts and loves and feels joy.
And know I am a child to encourage and direct.
Smile and say hello…..Even that is enough.
Understand that many people may feel awkward about speaking to you and will sometimes be clumsy in what they say. Sometimes you may have to correct them gently. Speak openly about your child and your friends will feel more and more at ease with the situation. You may even derive support from asking a friend to accompany you on your first outing with the baby. Give your family and friends the opportunity to hold your baby and play with him, or ask them to baby-sit for you if necessary. It may even help to give this booklet or other literature to your friends and family to read. Grandparents are often just as distressed as you are and may try to help by making suggestions that you interpret as negative. Communication and time will help to sort out all the problems. Your children, family and friends will mostly reflect your own attitude. If you cope with the situation effectively, most other people will to.
Will this child put a strain on our marriage?
The birth of a baby with Down syndrome may cause crisis situations in a family, but then any baby can put a strain on a marriage. Research has shown that no more marital difficulties are experienced by parents of children with Down syndrome than by the rest of the population. In fact, when asked about the effect of having a child with Down syndrome had in the family, parents often say it has brought them closer together. Never hesitate to seek professional help if you feel unable to handle your specific situation. A balanced, happy family life should always be your ultimate, overall goal, with a reasonable amount of time being devoted to each member of the family. A united, loving family can provide the strength you need. Private time for you and your spouse should definitely be set aside. Your marriage will benefit from a lot of time and consideration for one another. Your marriage is the foundation for the quality of life of your whole family! Where possible, parents and children’s daily routine need not be unduly disrupted by the birth of a baby. Your baby should adjust to your way of life; this should not happen the other way around. A child with Down syndrome can also participate and contribute to family life. Reports vary, naturally, but living with a child with Down syndrome is not all “give” and no “take” for parents. The amount of time spent stimulating a baby with Down syndrome depends entirely on each family’s overall situation. If exercises and games can be included in your daily routine this is preferable. However, it is important that you play and communicate as much with this baby as you would with any other baby. The rewards and satisfaction of raising a child with Down syndrome and the sense of positive achievement gained are perhaps greater than with other children. All goals are relative after all. You and your family may find that counseling and extra support can help you to cope with your particular situation. In this regard, you will greatly benefit by contacting professionals e.g. a social worker and especially parent groups (see addresses on page 29). Their advice can help you to maintain a balance and ensure that you are not neglecting your children, family and friends.
Will having a child with Down syndrome impact negatively on our other children?
It is of the utmost importance not to neglect your other children or your marriage partner, since maintenance of the family unit is of vital importance to all, including your child with Down syndrome. Parents should never feel obligated to devote all their spare time to their child with Down syndrome. Research has shown that in the majority of cases having a brother or a sister with Down syndrome does not impact negatively on a child. Children usually accept disability more easily than adults and can only benefit by developing a sensitive approach to life and people. Any hardship they may have to endure as a result of having a brother or sister with a disability can help them to mature and to face life being better equipped. As the siblings of a child with Down syndrome get older (about 10 years) they tend to need more factual answers and usually like to be involved in decisions about the child with Down syndrome.
“A doctor once sympathized with me that my brother had Down syndrome. I said to him that he shouldn’t be sorry, as I thought it is OK and even cool. He is after all my brother!” Christopher
Travelling with a child with special needs – What to keep in mind?