Introductory Letter To Parents

Dear Parents,

You have had a baby with Down syndrome. New life is a wondrous event, but the world does not glow and radiate joy as it should for you, because you have been saddened by this news.

We would like to tell you that we are all parents of a child with Down syndrome too, and it might help you to know that we understand what you are going through right now. We want you to know that we experienced all the feelings after the birth of our babies that you may be feeling now. We feel that by expressing some of our thoughts you may be heartened.

We all felt shock, fear and guilt. We all felt bitterness, confusion and of course deep sadness. At times we wondered if we could love our little ones with all their imperfections. And that is the beauty of it all, we love them with a unsurpassed love.

The degree of shock you are experiencing will greatly depend upon many things, perhaps how gently or bluntly the news of your child’s condition was told to you. However, after examining our own reactions, we know there is no easy way to be told. Thankfully these days we are usually informed as soon after the birth as possible, for the shock is far greater for those who find out months or even years later – a frequent happening in the past.

Fear is sometimes present, fear of the unknown. Perhaps this is your first contact with a child who has a disability. A tale we would like to dispel is that “they all look alike”. Children with Down syndrome look more like their families than they do one another. They are creative and imaginative in play and pranks. They laugh, they cry. They open cupboard doors and haul saucepans around the kitchen floor. They climb the slippery slide ladder, they play imaginary tea parties, they go to school, they go shopping. Favourite pastimes vary from person to person and range from reading and gardening to football, dancing and beyond. In general they create as much fun and havoc as any other child.

If bitterness is part of your emotions, do not feel alone here.  It is just as hard if this is your first or your eighth baby. You may feel bitter for many individual reasons. But the joy you will know when your child smiles, crawls or says “mum” and “dad” for the first time will help you to ward off this bitterness and replace it with feelings of love and hope.

How can you handle these strong emotions, and perhaps others, such as confusion, guilt and sadness at a time when you are both physically and mentally low? This is where we come in. Perhaps you would like to talk to some other parents of children with Down syndrome. This will ensure you that you are not alone and that we understand fully your feelings at the moment. Here you will find the encouragement and hope you need at this difficult time. Try also to seek out a close friend or relative who will listen with compassion.

Family, friends and neighbours are all people who need to be told. You must remember that they will perhaps feel some of the emotions which you are experiencing. If you show them that you love and accept your baby, then your child will be loved and accepted by all others. You will most certainly learn a lot about other people, even those you thought you knew well.

It would be unfair to tell you that life from now on will be easy and uneventful. There will be challenges all along the way. Perhaps we can help you foresee and be ready for some of these. Children with Down syndrome may need  more guidance in exploring the world around them that other children. This in itself can be very demanding but on the other hand very rewarding. Some children with Down syndrome will require special medical attention because of the problems associated with this condition. Your paediatrician will advise and guide you on what is best for your child. Don’t be afraid to ask what you think may be silly questions and be aware of what is available to help your child grow in good health.

We would like you to know that there are people and resources available to help you. There are groups to join where you can exchange ideas and experiences. We can provide contacts and resources which we hope will prove invaluable to you. Refer to these materials and resources often. We hope that they will encourage you when days are difficult.

Your child will have more opportunities than a child born with Down syndrome ten years ago. As young people with Down syndrome show what they can do with support from their communities as they integrate into mainstream programs, more doors are open for others. We have seen TV series starring talented actors and actresses with Down syndrome enlighten the general public about the potential of all our children.
Hundreds of young people with Down syndrome across the country are quietly going about their lives without fame or fanfare and transforming their communities. They have dreams and determination to reach their goals. They learn in regular classrooms in their neighbourhood schools with the children who will one day be their coworkers, neighbours and adult friends. Young adults hold diverse and meaningful jobs, maintain their own households and make significant contributions to their communities every day.

An active mind and body are two essential ingredients for good health.  Rex Brinkwood, an internationally recognised educator of children with Down syndrome, insists that stimulation of the mind and body must begin from birth and continue throughout life.

Therefore our message to all parents of young people with Down syndrome is to enjoy your child, share all your happiness with them, take hold of life, live it well and encourage all members of your family to be “alive” and part of your community. Your child may have a disability, but attitude will make all the difference.
Too often our expectations are set too low. Aim high, put a lot of life into living and you won’t be disappointed with your child because of a disability. Take on the challenge of family life which includes a child with special needs. Certainly the responsibility is great but it will be exciting and rewarding too.

The ACT Down Syndrome Association was established by families of children with Down syndrome to help other families. Please make good use of the association by voicing your requirements, in order that we may help you in any way possible.  Drop in for a chat and a cup of coffee. Make a point of calling in and saying “hello”. We want to get to know you and your family. That way our Association will become even more effective in its efforts as an advocate on behalf of families.

Please phone or write to us. Don’t hesitate, no matter is too small, and together the Association and families will become more effective in improving our young people’s lifestyle and our own as well.

Remember that you are never alone. We are as close as the phone. If we have given you some hope and encouragement, we are indeed grateful. Wishing you, your family and your baby the best of health and happiness.

ACT Down Syndrome Association Inc.
SHOUT Office, Pearce Community Centre, Collett Place, Pearce.
PO Box 717, Mawson ACT 2607

Phone (02) 6290 0656

(Some of the information in these articles has been borrowed from the NSWDSA, VicDSA & DSSSA, with thanks).