Grandparenting a Disabled Child
Grandparenting is a delicious second chance for nurturing a child. Chances are you looked forward to using hard-won lessons from your experience as a parent to do it better this time. Chances are you looked forward to the luxury of mentoring and sharing without the ultimate responsibility for daily discipline and daily chores. Chances are you had private and not so private dreams of what your grandchildren would be like and the many things you would like to do with them. Then life handed you a special grandchild with special needs.
Family dynamics always are complicated. They become even more so following the birth of a child with disabilities. As all members of the family work to accept what has happened and to figure out how to manage, old patterns of dependency and responsibility reassert themselves. It is not at all uncommon for the parents of the child to look to the grandparents to lift the burden and make it better. It’s a natural thing for most people to respond to painful events with “I want my mommy.” Meanwhile, if you’re the mommy (or daddy), you may be feeling as overwhelmed, upset, and confused as your adult children. As tempting as it may seem to fall back into roles with the older folks taking charge, it’s not healthy. Unless the parents are themselves disabled, they need to work through their feelings of helplessness and sadness and take the lead.
The Grief Process
It is normal to grieve the fantasized child who was not born even while loving the one who was. The first step in managing this crisis in family life is to make room for everyone to join together in the grieving. People will go through the grief process at different paces and in different ways. At various times, various family members will be in denial, angry, or sad. It’s not a contest of who hurts most. You all hurt.
Families whose members simply are there for each other with love and without judgment are most able to move through the grief to eventual acceptance. Grandparents who are the most helpful are those who find ways to strengthen themselves so that they can be an additional support, not an additional worry. This is a time for the senior folks to turn to old friends, relatives, spiritual life if you have one, and whatever other supports you might have to deal with your own feelings and to gather your strength. Don’t be surprised if grief returns every now and then. It’s normal. Grief often reappears, out of the blue, at different times over the special child’s childhood.
Sometimes people cast about for someone to blame. In their grief, I’ve heard people accuse each other of bad genes, bad habits, and even of creating the disability with a bad attitude. Most of the time, there is no one to blame. Most of the time, no one knows why a disability (especially an intellectual disability) happened. Even if a cause can be found, it can’t be undone by dwelling on it or by trading accusations. That will only tear the family apart. It’s better to put energy into thinking about how to move everyone forward into the final stage of grief, acceptance.
With that acceptance comes loving the child who is. The child who is fighting for life in the incubator, the child who needs immediate medical attention, the child who was born with a syndrome or a disability is first and foremost a child. Against all odds, this child survived. He needs all the love and loving you’ve got to become the person he can be.
For many families, there is unexpected joy and profound deepening that comes with meeting the challenges of a special needs child. The parents of this child also need your love more than ever. It is what will sustain them through tough times. It is what will help them celebrate the victories, large and small, along the way.