Down Syndrome Association of the Valley : Groups

Groups - Grandparents

Hello Grandparent and welcome!

You have the unique opportunity to play a crucial role of support and resource for your child and your grandchild.

We know you have to adjust to the news of having a grandchild with Down syndrome. We have a grandparent committe GRANDS, that is more than willing to talk with you about any questions or concerns that you have.

GRANDS (Grandparents Relating, Advocating & Networking for Down Syndrome) is a group for grandparents to work together in support of each other and their grandchildren.

A Grandmother's Perspective

“Hi Bubbie”. You have to hear the intonation of those words to know the blessing it is to a Grandmother’s heart. The lilt in the phrase is such a joy.

Those words are a frequent greeting from our three year old granddaughter, Marina. Marina was born in October 2005 the fourth child of our daughter Kelly and her husband Chris. We were not aware of any problems with this little baby girl until Kelly told me on the phone from the hospital, that they were doing some additional testing on Marina. That additional testing resulted in the diagnosis of Down syndrome. Knowing the term and having a friend whose adult granddaughter also has Down syndrome, was really the extent of our knowledge of this diagnosis.

Perhaps I was a little naïve, but to me, there was no issue. We had a new granddaughter period, and period. My first concern, really, was to be there for Kelly and to do what was needed. For Kelly and Chris who brought this little baby girl home, I know there were many tears and anxious moments. After all, raising this child and helping her grow was their responsibility. Where to begin to learn what is needed to help this little girl. Our daughter Kelly is a very independent woman who tackles things head on. She immediately began to research and seek out any information that she could about Down syndrome. What we learned, we learned as a result of the information that she passed on to us.

There are more details of Chris and Kelly and their journey and involvement in DSAV, but I am really speaking from the perspective of a Grandmother. In my mind, there is nothing that Marina isn’t or won’t be able to do, and as the phrase goes, “She’ll do as you do, but at her own pace.” Marina’s Papa couldn't’t be prouder of her. He rejoices in her every achievement, just as he does with the achievements of her older siblings.

Our experience with other grandparents of children with Down syndrome, has been so positive. The opportunity to meet these grandparents has been a direct result of the activities of The Down Syndrome Association of the Valley. I have found that the love and acceptance of these grandparents to their grandchildren has been unconditional.

Marina’s life has opened up a broader world to us and that’s not a bad thing. We have met many wonderful people, professionals in the medical field as well as everyday individuals who have also been blessed by welcoming a special child into their home and family.

While I have said that raising Marina is the responsibility of Chris and Kelly, as with any child, the influence and impact that grandparents have is an important part of any child’s formative years. There is a song that goes “What’s love got to do with it?” In my mind, the answer is absolutely everything. Love your grandchild!!! And, whether it’s Bubbie, Grammy, Grandma, Nana or any other title you’ve been given the return is better than any other investment you can make.

Click here for a printable format of this letter

Some Things NOT to say

(things that parents have said really upset or angered them)

"I'm sorry" or any form of pity. Pity is not what new parents want or need. What they need is love and acceptance of their new baby.

"God gives special parents special children" or any variation. The new parents probably don't feel very special right now. Also, some parents may be a little mad at God. Trying to make them feel better with words like these might be appreciated by some parents and not by others. It is best to avoid this.

"They're such loving children." This is a stereotype of children with Down Syndrome and demonstrates that you really don't know much about Down Syndrome.

"Do they know how serious it is?" or any variation. Again, this is a demonstration of a lack of knowledge about Down Syndrome. Some parents may be angry and want to reply with, "How serious is it? Well, every single cell in his body has an extra chromosome... is that serious enough?"

"You are handling this better than I could." This is an invitation for the new parents to say something like, "No, you would be wonderful." Suddenly, the conversation has switched to you instead of the parents and their new baby. Plus, you don't really know how the new parents are handling it, do you?

Some Things TO say

(things that parents have found comforting or made them feel good)

"Congratulations." They just had a baby! What better response to show that you love them and their baby than to say congratulations.

"He/She looks just like you." The baby probably does look like someone in the family. All of the baby's genes are from the family.

Friends and family who actually 'did' something like read about the disability (or find information on the web!) This really means something to the new parents. It shows love and concern for the baby.

Offer to babysit. It is a fear of the new parents that their family will not accept the new baby. By saying something like, "Well, when are you going to let me babysit?" you are showing the new parents that you want to be part of the baby's life. This will be a great relief to them.

"He/She will do fine." The new parents are probably pretty worried. They might not know much about Down Syndrome and they may be concerned about possible medical problems. Having a positive attitude will rub off on them. They don't need pessimism or negativity from their loved ones.

"We'll all learn from him/her." This is another good way to show that you intend on being part of their lives. After all, how can you learn from their new baby if you are ashamed of him/her? Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled.

"We will always be here to help." Another very good way to show that you are going to be there. Let the new parents know that you intend on being part of their lives.