Navigating deep waters....learning how to swim in the world of parenting kids with disabilities.

I've been a parent for 13 years. For more than 9 of them I have also been the parent of a child with hidden disabilities. One has followed another and now I am the parent to many children with hidden disabilities - all of them treasures, all of them precious to me and every one an individual. Up until recently we have been able to 'pass' (don't know if that is the right word for it within disability but within the AA social context we all understand what it historically means.) Through careful home training and selective involvement with outside activities my kids have not experienced what it means to be different from their peers. Not that we are sheltering them excessively - we have just allowed them to develop into who they are before we added in the social stress of competing with other kids who do not have disabilities. From my perspective it's working - we don't have any of the secondary issues that might have been manifesting by now if they had been facing peer pressure and public failures. (An example would be FASD as a primary issue, depression, high-risk behaviors, lying, hurting others as secondary ones.)

As the kids are getting older we are starting to get involved in new areas of the disability world. Even simple things like Soccer Camp, Transracial Adoption Support Groups, Diabetes Education and Sunday School can lead us into the uncharted waters of how to chose what activities our kids should be involved with and how to make it work. With each activity we have to decide who to talk with about our kids challenges and when, what words to use in explaining the situation and how to access if the fit is a good one for the child.

It's deep water. There are as many opinions on these issues as there are on the topic of how to think about and discuss race. Just like we have decided how our family is going to address the Black, African American, Original People's question, we are now figuring out how we are going to manage the 'disability' ones. It's hard not to be swayed by the loudest voice or the most critical one. The voice of guilt is in on the discussion as well as that of the professional world and that of history - within our home we are seeking to find the voice of the Father because that is the only one we can trust to keep our family where it needs to be.