Down Syndrome South Africa
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.
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.
COMMENTS FROM PARENTS
“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 Sydrome. 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
Second article: FOR KIDS-SIBLINGS
FOR KIDS – SIBLINGS
You have probably just heard that your sister or brother has been born and has Down Syndrome and you could be feeling very confused right now and are not too sure what is going on or what Down Syndrome really is. Your Mom and Dad may be feeling a little sad and have been crying, but that is okay. You too may be feeling a little sad and you should allow yourself to cry if you feel you want to.
The name DOWN SYNDROME comes from the person who first identified people who all had Down Syndrome. In 1866 he recognized that some people had the same features (all looked very much alike) and acted in the same way. He saw that they were a lot slower than other people and that they could not quite manage to do everything on their own and needed some help. His name was Doctor Langdon DOWN, and that is where the name Down Syndrome comes from.
Having Down Syndrome means that your brother or sister will be a bit slower than you at doing things. He or She may start walking and talking later than what you did. Developing at a slower rate is not such a bad thing, and he or she may need some help from you. Your parents will surely be happy that you play and help with the new baby. You should tell your friends and teachers about your brother or sister and what Down syndrome is.
You will see that in time your brother or sister will be loved by the whole family just like they love you and will enjoy the baby. The new baby will bring you all a lot of joy. Just treat him or her like you would any other family member – with love.
Add this from the old website as the third article: https://downsyndrome.org.za/information-pamphlets/
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