My sister, who has a son with disabilities, has been fortunate enough to find a Bible study group where she can get support and talk about some of the issues and joys of raising a kid with cerebral palsy and PVL. She often tells me how she looks forward to the group.
I wonder, with a better understanding , if some of the problems (as they are called) of including children with disabilities in churches such as the recent case of a boy with autism, would get to that point if the parents of children with disabilities were receiving this kind of support and understanding. And if they aren't, maybe that points out that there are bigger problems than we may originally think.
Because how we behave when we're not in church is really important too.
A parent who had a child with a severe disability who was able to get to Mass, but not able to go to any other church functions because of the care the child required told me that her church had a program which provided respite care to help with eldercare, including nurses and others who could have cared for her child, but when she approached them to see if she could get some help , she was turned down - and the folks running the elder care respite program asked her to volunteer with that!
Whose responsibility is it to assist parents of children with disabilities when they need a break? There are some state programs out there, although it varies. Some families can help some of the time. But the reality is that many parents get no break. This is sad, because it not only affects the parent, but the rest of the family and their quality of life. Sometimes a parent can't even attend a funeral or make an appointment for their own medical care.
We need to look for ways that we can celebrate family values by supporting parents of children with disabilities in our faith communities. If you know of some ways this has been done or have some suggestions, please feel free to leave a comment.