Extended family is very important in any child’s life, but that network of support becomes crucial to families who have a child with Williams syndrome. We asked several grandparents to share their experiences and they gave great candid advice. We thank them all for opening up in the spirit of helping others with what they’ve learned. Enjoy their responses.
In a one sentence “blurb,” describe the role of a good grandparent to a child who has WS:
a. There cannot ever be too much time spent with a grandchild who has Williams syndrome -- time spent is everything.
b. Being a good WS grandparent means loving, embracing, and accepting the child who has WS as one would do with any grandchild!
c. The role of a good WS grandparent would to me be the same as for any grandparent: Be loving and supportive.
d. Sure, there are differences between children with WS and without but in the end all that we want for them is to be loved and accepted. I think one of the most important things we can do is to lead by example. We should all always CHOOSE KIND!
e. Be supportive and provide unconditional love.
f. Be available, patient, open, fair, non-judgmental, loving and yourself.
What advice do you feel qualified to give a grandparent who has just found out their grandchild has been diagnosed with WS? Please feel free to share your initial thoughts when you were in their place, and how those feelings/understanding may have changed over the years.
a. Initially a great deal of fear, so many unknowns. There were no obvious physical signs or symptoms—only some developmental delay. At the time of diagnosis she was 16 months old. It was my daughter, after researching online, who asked that she be tested for Williams syndrome. There was relief that we had a diagnosis but I think initially there was a sense of isolation. No one that I spoke with had heard of Williams. Now that she is 9 years old with contact with other Williams families of sharing experiences and a great deal of hope and optimism that sense of being alone is no longer there.
b. Visiting Erin and Adam in the hospital after they gave birth to Knox, we both already knew something was askew since Knox’s facial markers were already prominent. We didn’t say anything and waited for a diagnosis (I should mention that I, Erin, and my husband all had careers in hospital settings). Once the potential diagnosis of Williams was suggested, I think our paths changed a bit from the norm. Our daughter (Knox’s mother) quickly went into the panic spiral that I am sure is quite normal for parents getting such news. However, my husband and I were members of a close social circle for many years that included friends with a young adult who has Williams and who frequented adult events (parties, picnics, bowling, etc.) so we reacted quite differently because we absolutely loved the individual we knew. Of course, we have concerns given the current nature of politics and worry that we won’t always be around to provide guidance and protection, but that really isn’t any different than how we feel about all of our grandchildren. So, no, we didn’t feel loss, or embarrassment, or some sense of unfairness. All of that is to the credit of the people we know and interact with who of been on this journey for 24+ years. They are great people, their son is an articulate delight, their lives are different, but not in a lesser way – just different.
c. My first reaction to Trent’s diagnosis was grief. I grieved for my daughter, for the difficulty of her life as a parent of a child with Williams, and I grieved for Trent, and wondered how his life would unfold. He was only six weeks old at this point. The advice I would give is that your grandchild is much more than a child with Williams. He/she is a precious gift of love, and Williams is not a sentence. Trent will be 4 soon, and has achieved many, many accomplishments. My daughter has worked very hard with him, and has taken him for every therapy session he has qualified for. She has spent endless hours on the phone, wading through the maze of special services and doctor appointments. But, that child is so special, and capable of much more than you would think!
d. From the day Thom was born we knew that there was a possibility that he had WS. The diagnosis was confirmed shortly thereafter, but my daughter and son in law needed time to absorb the information and didn't tell us for a few months. From what I have learned since then this is not unusual. I had never heard of WS so the first thing I did was google it (use the WSA website instead!). I am not sure what website I was on but I remember sobbing when I read that most people with WS end up living in group homes. Back then and even now it is the "scary thing:" Thom will more than likely always be dependent on other people.
e. When I was first told that my grandchild had WS, of course I shed a few tears. Not for my granddaughter, for I knew that she would always be deeply loved and cared for, but rather for my son and daughter-in law. I feared the strain raising a special needs child would have on their lives and on the life of Coralie's big brother.....that the dreams they had for their family would now be changed, made more difficult.
f. As a person who spent my career working with special needs adults, childrenand their families, when my granddaughter was diagnosed with WS I was shocked, dismayed and worried. I thought of all the many challenges ahead for Payton and her parents and what my role should be. I would advise the grandparents to learn about WS and ask the parents the appropriate ways in which they might assist them and support them in coping with their child’s disability. As Payton grew older, the challenges that she and her parents actually had to face could not have been totally predicted by anyone. Payton does not have the cardiac issues that some children have and her health has been relatively good. As she has grown older other challenges have presented themselves.