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.
What Kind of Help Is Helpful?
The most helpful grandparents are those who are ever mindful that their experience as a parent may not be relevant to this situation. Skills that served you well may not be a bit helpful with this special child. Sometimes it may look to you like your child is being too hard or too easy on your grandchild. Be curious rather than critical. Your grandchild’s parents may have very good reasons for doing what they do. If you still think they are approaching something incorrectly, keep the conversation respectful. Unless they are endangering the child’s health or safety, it’s their call.
Get informed about your grandchild’s disability. You need to learn as much as you can about the specifics if you are to be at all helpful. Often there are support groups for parents and grandparents of children with similar medical or intellectual limitations. Your adult child may be too stretched with daily care to be able to attend meetings or to spend time on the Internet. If you can do some of this legwork, you can provide the family with valuable information.
In addition, you could ask the parents if you they would like you to come along when they go to appointments with specialists. Two or three heads really can be better than one. If possible, encourage the parents to help you make a list ahead of time of the questions they want to be sure to cover. If the parents get occupied with managing the child during the appointment, you can help by making sure that all questions get asked and by taking careful notes.
Be sensitive to when advice is welcome and when it is important to back off. Let the parents know when you have some information and ideas to share. Tell them when you discover what other people have found to be successful and when you have found new resources. Then give them room to ask for the information and to make their own decisions.
Develop a relationship with your grandchild by getting actively involved. See the child, not the disability. Work with the parents to learn how to play, how to show affection, and how to set limits on this child’s terms. All children need loving attention. All children need to be lovingly taught. Special children are no different.
If you are physically and emotionally able to manage your grandchild, you can be an important pressure valve for the who are understandably reluctant to trust anyone else with their child’s care. Being on duty 24-7 can leave parents exhausted. Volunteer to learn any necessary skills so that you can competently provide care. When parents are able to leave their child with a trusted grandparent for even an hour or two of respite now and then, it can make a huge difference. They can get some needed rest, reconnect with the other parent, and think more clearly about issues.
If there are siblings, one of the most important things you can do to relieve family stress is to make a point of spending time with them. Help them get involved with activities that they otherwise would miss because their parents can’t leave their sibling. Help with their homework. Go to their games and performances. If you can care for the special needs child, urge the parents to take some individual time with the other kids. ( See Taking Care of the Other Kids).
Know Your Own Limits
Sometimes grandparents inadvertently get themselves trapped. They offered to help. They really did want to be a good support. Then they find that they just plain don’t have the emotional or physical energy to do the job. Not wanting to let anyone down, they keep trying to do what they promised and grow more and more resentful along the way. As difficult as it may be, it is much, much better to face it and be clear about what you can and can’t do. Then your adult children won’t be disappointed by unmet expectations and you won’t feel like you are constantly letting people down.
It’s All about Love
Back to those dreams of yours: You are the grandparent. Reach beyond the disability to the child and you will find a grandchild to love.
Hartwell-Walker, M. (2015). Grandparenting a Disabled Child. Psych Central. Retrieved on July 29, 2016, from http://psychcentral.com/lib/grandparenting-a-disabled-child/