A Parent’s guide to DOWN SYNDROME - STEP BY STEP into the future
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You and your new baby
Firstly, let us congratulate you on the birth of your new baby. Remember, your baby is a baby first and foremost and that the syndrome is very much secondary. Your little baby is as precious and as beautiful as all new babies and has the exact same needs. Some parents cope better than others in caring for their new baby. This is the case whether the baby has a disability or not. We think it is extremely important that the fact that your baby has Down syndrome is neither your fault nor that of your partner. The simple answer is, the birth of your baby with Down Syndrome is the result of a chromosomal problem.
As mentioned earlier, baby comes first and the syndrome second, so celebrate your baby’s birth just as you would any other baby. It is very natural that after the birth of your baby, you will experience lots of different emotions: fear, anger, rejection, guilt, denial, lack of self confidence and self pity. These are all very normal reactions and you are not alone in this.
On learning that their baby has Down syndrome most parents react in ways that have been shared by all parents before them.
One of the first reactions is that of denial - how can this be happening to us, our child our family?
Guilt - Was it something we did or did not do that caused this to happen? Sometimes parents feel that they are being punished by God. Why me? What did I do to deserve this? Did I take care of myself during pregnancy?
Fear - is another immediate response - fear of the unknown.
Disappointment - that this is not the baby you had hoped for. You are not filled with joy at the birth of your baby.
Rejection - is a very real emotion. Rejection of the new baby and sometimes even a death wish for the baby.
Lack of self confidence and self pity - you may start to withdraw and feel self pity. Remember you have family who are probably going through many of these stages too and that it is not just you feeling like this.
Not all parents go through every one of these stages, but it is important for you to identify with the different feeling and to realize that you are NOT ALONE.
How to cope
Talk to your partner. As a couple and as a family it helps if you discuss your feeling openly. Often at times this helps to relieve the understandable stress and grief which you are going through. The more couples can communicate at difficult times like these, the stronger they will be together in facing future challenges. If there are other children in the family be aware of their needs too. Explain to the children as simply as possible what is wrong with the baby. Remember that they also were excited at the prospect of the arrival of a new brother or sister.
Do not be afraid to show emotion. So many parents especially dads, hide their emotions because they think it is a sign of weakness to show how hurt and disappointed they feel. Never be afraid to cry.
Don’t hide the fact that your baby has Down syndrome. It is much easier for you if you share this information with your family and close friends as soon as it is medically confirmed.
Look after yourselves. Learn the terminology. Don’t be afraid to ask questions, it is your right, it is your child.
Seek information in your own time, and when you feel ready to cope. Constructive help is available for your child. Love and enjoy your baby. Granted, your baby will develop at a slower rate than other children, but this does not make him or her less in need of your love and parenting. You will learn to love and enjoy your baby and see that baby comes first and Down Syndrome second.
The feeling of isolation after the birth of your baby is a universal one.
It is all right to feel all the emotions that you do, don’t be ashamed of them. We all experienced them and still sometimes do.
Baby at home
Stimulation is very important in the development of our babies. It simply means encouraging baby to become aware of you, the rest of your family, baby’s surroundings and the day to day household noises.
Our babies tend to be quieter and cry less than other babies. Do not leave the baby alone too long. Baby will enjoy the mayhem in the kitchen, the sound of your voice and of the radio, the smell of cooking, etc.
Encourage eye contact by talking and singing to the baby during feeding. This will help development and is a very good form of stimulation
When baby is in the pram or cot, hang bright mobiles where they can easily be seen - use nice bright colours. Home-made mobiles can be changed frequently. You can involve the other children in the family in the making of the mobiles and they in turn will feel they have contributed to the baby’s development.
You will find as you go along that there are may different ways to stimulating your baby, who will then respond to you more and more. It is up to us to compensate for that nature did not complete.
Comment from parents
“My first reaction when my daughter was born with Down syndrome, was one of some shock and confusion. I was also very concerned for the well-being of my wife and afraid she might feel disappointed - though personally I wasn’t. After the first few weeks, calmer emotions took over and I discovered what a lovely little child we had and all the fuss was forgotten. Now nearly seven years later, I just feel sorry I didn’t welcome her birth with more delight and joy. I can’t even begin to describe how much fun and happiness our child has brought us.” DAD
“I can remember the first moments after being told that we had a baby with Down syndrome. I felt that our world had fallen apart. I was frightened of the future, I ached with sadness, I cried and grieved for the baby we thought we were going to have but didn’t. The sense of loss was overpowering. Our family and friends were equally shattered. We all cried a lot together and I feel that its very important to share your feeling openly with your partner and friends - it does help. Now, a few years later, I can say that we have had all the ups and downs with her that we had with our other children. Her development has been slower, but each milestone reached brought much joy and happiness to all of us. She is a right “little madam”, bold as brass one minute and so cuddly and loving the next. I wouldn’t change her for anything:. MOTHER.
“We never tried to cover up the fact that our baby had Down Syndrome. We found that often people coped better with our being open and showing off our new baby.” MOTHER.
“When I came home from hospital with my baby, I contacted the Down Syndrome Association and a parent came to visit us and showed photograph’s of her child. We felt a lot better afterwards.” MOTHER
“My angel was born 8 years ago and I will never forget the time I was told my child had Down syndrome. It was as if the doctor had just taken the life from me. The pain was incredible and I was so overwhelmed by the news. I thought my life would change forever and that I would have a very sickly child. This could not have been further from the truth. He has given us so much joy and is really doing well. “MOTHER”
Down Syndrome Associations
It is advisable to contact your nearest Down Syndrome branch for more information regarding Down syndrome. They too will be able to provide you with a list of local therapists when needed as well as many other services. It may be helpful to ask to see a support parent counsellor who will be able to provide support as well as answer many questions that you may have.
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 abnormality 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.
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 so 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.
Always remember that people tend to take your behaviour. reactions and attitudes as an indication of how they should react to you. 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 babysit for you if necessary. It may even help to give this brochure or other literature to your friends and punily 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 fiends will mostly reflect your own attitude. If you cope with the situation effectively, most other people will too.
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.
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 ltfe 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 round. A child with Down syndrome can also participate in 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 inluded 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. Every small achievement will be wonderful All goals are relative after all.
You and your family may find that counselling 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. Their advice can help you to maintain a balance and ensure that you are not neglecting your children, family and friends.
Will the care of our child with Down Syndrome cause us to neglect 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.
MYTHS ABOUT DOWN SYNDROME
MYTH: If a member of your family has Down syndrome you are more likely to have a baby with the condition.
FACT: Untrue, 99% of cases of Down syndrome are not inherited.
MYTH: People with the condition are incontinent
FACT: The vast majority of children with Down syndrome use the toilet like everyone else
MYTH: People with Down syndrome do not live very long.
FACT: People with Down syndrome have an average life expectancy living up to 60 or 70 years
MYTH: Children with Down syndrome will not thrive outside special schools, and only go to school to make friends and not to learn
FACT: On the contrary, increasing numbers of children with Down Syndrome attend mainstream schools, and go on to achieve employment
MYTH: Babies with Down syndrome cannot breast feed
FACT: Babies with Down syndrome can and do breast feed successfully
THE THINGS PEOPLE SAY
Many people will talk about a Down syndrome person but it is more appropriate to talk about a person with Down Syndrome. THEY ARE PEOPLE FIRST AND FOREMOST. The fact that they have Down syndrome is of secondary importance.
NEVER refer to a person with Down Syndrome as a “mongol”, downsie, or downs child.
Down syndrome is not a disease, so it is inaccurate to say that people suffer from Down syndrome or that it can be treated.
People with Down syndrome used to be described as mentally handicapped. Saying a person has a Intellectual disability, learning difficulty or learning disability is now considered to be more acceptable.
Mental handicap is associated with demanding terms such as “mental”, “backward” or “subnormal” suggests an old fashioned image of being incapable and dependent. It can lead to confusion with mental illness.
The terms integration and segregation are often used. In the context of people with learning disabilities, segregation means to set apart, to isolate. Integration means sharing places and activities alongside others.
ATTITUDES IN SOCIETY
People with Down syndrome look a little different and are, in general, relatively less able that the population as a whole. It is important, however, that the lives of all people have the same value and that they enjoy the same rights.
People react in different way to those who have a learning disability. Some avoid contact because of embarrassment. Others are over protective, insisting on helping with things people can do themselves.
Stereotyping and generalizations such as “people with Down syndrome have lonely temperaments”’ are not uncommon, but mean that those people are not being treated as individuals.
Encouraging people with Down syndrome to behave in ways not permissible in other people of the same age, such a being very friendly, does not help people with Down syndrome to be accepted.