Just for Grandparents

Marsha H. Lupi, Ed.D. Hunter College of the City University of New York wrote, back in October 1993, that becoming a grandparent, whether it is for the first, second or fourth time, has been said to be a very special and wonderful event.

"It differs from parenting because the need to be the rule-maker, watchdog and disciplinarian is no longer the grandparents' responsibility and is taken over by Mom and Dad before and after visits. Going to Grandma and Grandpa's house is to be fun, a time to be showered with treats and grandparents "looking the other way".

"Grandparents also play a critical role in the adjustment or readjustment of the new or growing family or their son or daughter, particularly if the grandchild has been born with a disability. The various kinds of support available from grandparents may include helping with child care, family finances, boosting the self-confidence of a new mom or dad and sharing family culture and traditions. Moreover, positive feedback and help given by grandparents can have a positive impact on mother-child interaction and sibling anxiety. Grandparents can thus be seen as very important to the health and welfare of the new family. If they never come to terms with their own grief at the birth of a grandchild with a disability, it may have devastating effects on their son or daughter and his or her family life, particularly if they remain distant and disapproving.

Grandparents of children with PWS may face some special issues in their relationship with their grandchild and his/her mother or father. After all, a grandchild with PWS presents a host of very specific and intricate limits and patterns of behaviour that may require certain responses from anyone entrusted with his/her care. Some questions brought to mind when grandparenting a child with PWS are: "What happens when Jimmy wants an extra slice of cake Grandma made?" and "Do grandparents of Susie ignore her little white lies?" These questions are merely illustrative of some of the things that grandparents may naturally do ‘in the line of duty' but they undoubtedly have different consequences in the realm of PWS."

It is extremely important in a family that the grandparents understand just as much about the syndrome as the parents. Just one piece won't hurt! If you fed that child right, she wouldn't be hungry! There're no calories in that! It's only fruit juice, it's good for him! Although there is an inherent belief from grandparents that they are not spoiling their grandchildren, for the one with PW, they surely are! They're not just spoiling the child, but all the time and hard work that you have put into this special grandchild.

Having said that, most grandparents will cooperate because they truly care, but remember, they're having a hard time too in understanding and accepting this strange ‘syndrome'.

Knowing where and when to led support to their family might present a problem to the grandparents - not knowing whether their support might be seen as interference, often means that support is withheld. However, from a survey that Marsha Lupi conducted a survey back in 1991 in the New York State it is easy to see where support was most appreciated:

The survey found that grandparents of children with PWS:

  • See their grandchild with the same frequency that grandparents of non-disabled grandchildren do, usually once a week.
  • Assume occasional care, usually babysitting when their son or daughter and spouse have plans for an evening out
  • Take their grandchild on the same outings as grandparents of children without disabilities (to the park, zoo, malls, movies)
  • Attempt to follow the dietary restrictions or plan that their son or daughter and spouse have for their grandchildren
  • Make an effort on a regular basis to remove food from their grandchild's view - that is they ‘lock up' temptation
  • Occasionally ‘slip up' giving extra treats (and admit it!)
  • Continue to have a fairly supporting and stable relationship with their own son or daughter if it was in existence before the birth of the grandchild with PWS
  • Would like to receive ongoing information and support from professionals and other grandparents.

The PWS Association Freephone (0800 4 PWS HELP, 0800 4 79743) is available to anyone needing someone to talk to.