FOR GRANDPARENTS
You know, I never knew my heart could open up so wide. Dominic does that for me.
-Grandmother of an 18-month-old boy with Down syndrome.
The birth of a grandchild is one of the most highly anticipated times of a grandparent's life. A diagnosis of Down syndrome, either prenatally or upon the birth of the child, is generally a great shock and can be very overwhelming for all family members. Grandparents must not only become reconciled with their own emotions but are also very concerned about both the newborn and their children, who are now the parents of a child with special needs. If you are the grandparent of a new child with Down syndrome, we would like to provide you with some basics about this condition and help you get your bearings on this new road.
Down Syndrome Today
There is a good chance that when you were growing up, many people with Down syndrome were institutionalized, and it was believed they could not learn. Thankfully, times have changed dramatically, and the future is much brighter for individuals born with Down syndrome. With early intervention, people with Down syndrome are graduating from high school, working at various jobs, living independently, and just going about their lives like anyone else. Upon hearing the diagnosis, many families want to know how "severe" their children are, but there is really no way of telling how your grandchild will fare in the long run. As with any child, your grandchild's strengths and weaknesses will emerge over time. Keep in mind that despite having an extra chromosome, all of the child's genes come from the same father and mother. This means his or her appearance, personality, talents, and other traits will resemble those of you and your family.
What you may be feeling
There will probably be a lot of different emotions that you will experience over the next few weeks. Some grandparents have reported feeling concern, worry, anger, grief, confusion, numbness, to name a few. One grandparent said that the time after the diagnosis was like being in a "tunnel, where you cannot see your way initially. If you keep walking, you do come to the other end." People will come out of this tunnel at different times, but what you should know is that it is completely normal to go through this process, and most importantly, it gets better with time.
In the words of one grandparent, "A parent wants the best for their children, and their children's children. It is hard to raise a child. How hard was it going to be to raise a child with a disability? How tough was it going to be for the child?"
There are common fears, but fortunately your child and your grandchild will not have to go through this alone. In Halton, your grandchild will quickly be referred to the Infant and Child Development Program and will be assigned a Developmental Consultant and an Occupational Therapist who will visit the family at home. This team will assist the parents in making sure your grandchild has the right start and will provide activities and resources to benefit your grandchild's development. Halton Down Syndrome Association also offers a great deal of support for new parents and for individuals with Down syndrome as they get older. It may take a while until the parents are ready, but these organizations are waiting for them when the time is right.
Although your thoughts may be full of everything the child cannot do in the beginning, keep in mind that Down syndrome will not limit the child from sharing in many of the activities grandparents enjoy doing with their grandchildren. Your grandchild will thrive under your love and attention and will be happy to bake cookies with you, play games, go to special events, read stories, sing songs and join you in all the things you would do with any grandchild.
Terminology
As you know, language evolves, and this is certainly true of the terminology used to describe individuals with Down syndrome. Here is a crash course on how to talk about your grandchild's condition:
Some countries use the term "Down's Syndrome", but the correct usage in Canada is Down syndrome, without the "s".
Remember the child is a person first, so you would say you have a baby with Down syndrome, not a "Down's child" or "Down syndrome baby".
The child is not "suffering from" or "afflicted with" Down syndrome; the child has Down syndrome.
The term "mental retardation" is still used in the U.S., but is falling out of favour in Canada. Other terms you can use are intellectual disability or developmental delay.
The term "mongoloid" is considered taboo and is highly offensive.
How you can help
Most grandparents just want to be there for their children, but it might be hard to know what to do. Here are a few ways you might be able to help after the baby arrives:
Do what you would do upon the arrival of any baby. Make a casserole; babysit older siblings; or pick out an adorable outfit.
Try to be sensitive to your child's feelings. Ask your child how they would like to share the news. Some might want to prepare an email in their own words to be sent to family and friends. Others might like you to deliver the news for them. Be patient with your child; he or she will be experiencing a rollercoaster of emotions, so try to be understanding if the new parents are upset.
Be as positive as you can. You may not feel too upbeat in the beginning, but try not to be negative in the presence of your child. Find aspects about the baby to praise - her sweet little fingers, his beautiful hair, her lovely skin. Although it may be hard to feel positive in the beginning, remember that negative words may be hurtful to your child and will be remembered.
Show your acceptance of the new baby. Offer to hold and cuddle the baby and try to express that the baby is a welcome new family member. New parents will wonder how society will accept this child, and it is very important for them to know that this will not be an issue within their own family. Encourage other extended family members to follow suit.
Offer empathy, but not pity. There is no doubt about it - raising a child with special needs has its challenges and it helps if you have an understanding of what is in store. However, few parents want to be pitied. They love their children regardless of their diagnosis and it can be difficult when people feel sorry for them for having that child.
Down the road
Once the parents and baby are home and begin this new journey, there are other ways you might be able to help your children and your grandchild. Here are some suggestions:
The new parents will be faced with many medical appointments. If the appointments are at a large unfamiliar hospital, you might offer to go with them. Sometimes it helps to have another set of ears at the appointment or someone to take notes. The amount of information can be overwhelming in the beginning, and if one parent has to go to all the appointments alone, he or she might welcome some company. Once again, if there are other siblings, babysitters would be appreciated as older children often do not really enjoy these appointments.
Offer to do some research for the new parents. Perhaps you could find out if there are any parent groups offered in the area, or you could look into future planning. There is a lot of information to sift through, but if you choose one tangible issue to investigate, this could be very helpful.
Be prepared for ups and downs along the way. The family will have good days and then there will be harder ones, for example, if surgery is involved or if other medical needs are discovered. Keep in touch with the family and express interest in updates.
Find out what you can about this condition. An excellent resource to start with is Babies with Down Syndrome: a New Parents' Guide edited by Susan Skallerup. The most recent edition of this book is the Third Edition, which was published in 2008. The more you know, the better you will be able to understand your children and your grandchild.
Take one day at a time. Don't worry what lies ahead 20 years from now. Try to separate your worries from what the reality is. Some children do have to go through scary medical procedures, but many of these surgeries are very routine nowadays. Focus on that lovely little baby. You will have that special bond with your grandchild that you hoped for and his or her success will bring you great joy. Many families with children who have Down syndrome describe the child as a "gift", and before too long, you will discover why.