The Early Days - After the Diagnosis of Down Syndrome
Learning that your child has Down syndrome can be a very confusing time in your life. You may feel overwhelmed, afraid and alone. There are some things that you can do to help yourself through the first few days.
You may feel shock, guilt, disbelief, fear and a whole range of other emotions. It is important to remember that we don’t have control over our emotions. We can possibly control how we look to the outside world, but it is almost impossible to control what we are actually feeling. Don’t spend a lot of time fighting your emotions, or trying to mask them. This takes a lot of energy and there is no benefit. Realize that while you may feel like you are on an emotional roller coaster ride, the ride will eventually slow down. Allowing yourself to feel, and to grieve, is an important step in learning to accept your new baby.
Information and Support
Find a good source of information. This can be your pediatrician, a social worker in the hospital or another parent of a child with Down syndrome. While there is a wealth of information on the Internet, in the very early days of your child’s life, you will find it much more helpful to talk to a person. This person should be able offer both emotional support and advice on practical things such as dealing with feeding problems. Having someone nearby will help you make a positive adjustment as you begin to realize that people with Down's syndrome can live lives every bit as full and rewarding as anyone else.
While you may be experiencing a whole range of emotions, recognize that your spouse is also experiencing their own emotional responses to the news. These emotional responses may not match, and your spouse may not be able to support you as much as you would like due to their own reactions. You may need to find an alternate source of support until you are both in a place where you can help each other again. It is important to realize that each parent has to go through their own reactions and that each person’s process should be respected. As the days pass and things settle down, it will be easier to provide support to one another.
Children are amazingly accepting creatures. More than likely they have been impatiently waiting for this baby to arrive, and are simply delighted that they are here. While you shouldn’t hide the diagnosis from them, it is important to present the information in a simple, straightforward manner that they can understand. In the beginning it might suffice to tell them that the baby is special and will need extra help. As your children get older, you can add to this explanation.
Don’t try to hide information or reactions from children. In addition to being amazingly accepting, they are also amazingly perceptive. They will know that something is wrong. Be sure and address their fears with realistic explanations.
If your older children are experiencing normal sibling rivalry, be sure that they understand that they did not cause the infant to have Down syndrome. Sometimes children mistakenly believe that their negative thoughts about their new sibling might have actually caused their sibling to have Down syndrome.
If you are having trouble talking directly to your children, you may want to consider buying some children’s books about Down syndrome. These books are a great starting point for discussions.
Take Care of Your Baby
There is no faster way of moving past the shock of hearing that your baby has Down syndrome, than to spend some time getting to know your baby. Just like other newborns, your baby will need to be fed, diapered, cuddled, bathed, played with and loved. Getting to know your baby is the best way to start to put their diagnosis in perspective.
If you are planning on breast feeding your baby, it might be worth your time to check out the La Leche League’s website. Because infants with Down syndrome have low muscle tone, they can have trouble with breast feeding. The La Leche League has a factsheet with some tips that might be helpful, and your local lactation specialist can also help. While breast feeding an infant with Down syndrome may take a little more effort initially, the wonderful health benefits from breast feeding will make your efforts worthwhile.
Be Kind To Yourself
There is nothing that you did or did not do to cause your child’s Down syndrome. It is almost a universal reaction for new parents (mothers in particular) to blame themselves, but there is absolutely no medical evidence for this belief. Try to get past this feeling of guilt, and start to see your child as the wonderful individual that they are.
Also, as time goes by, it is almost inevitable that you will have a bad day. Try to keep this in perspective — it is just one day. The next day will be better and there is no need to waste energy beating yourself up for having a bad day.
Cunningham, C. (1999). Understanding Down syndrome: An Introduction for Parents (2nd ed.). Cambridge, MA: Brookline.
Stray-Gunderson,Karen. [IBabies with Down Syndrome: A New Parents' Guide Woodbine House. 1995