The Natural Tribalism in Disability Parenting

A truth about disability parenting was revealed to me in two recent conversations. 

The first conversation was with an acquaintance - someone I don't see very often, but whom I care about very much. Like me, she's the mother of an adult child with disabilities but unlike me, she has had little support over the years. In combination with her own serious health concerns, my friend's path has not been an easy one. 

Yesterday we met and had a long chat. Tears were shed, hugs were freely given. We shared stories of the challenges and transitions we and our kids have experienced over the past year.

Today I met another friend who I don't see more than a couple of times a year. She too is the mother of a young man with disabilities who thrives with some support in the community. Her son has a meaningful, rich life and so does my friend, his mother. Today I mentioned that I'd run into the other Mom yesterday whom I assumed was a mutual friend, because we all live in the same community. It turned out that my friend today didn't know my other friend from yesterday's chat. But there was something else. 

I felt the difference between parents of severe disabilities and parents of children with more mild impairments. My friend who is the Mom of a son with milder challenges is one of the kindest people I know. She exudes natural healing and concern for others. It wasn't that she wasn't concerned for my other friend. She just didn't feel the kinship that I do. 

I recall writing a blog entry a couple of years ago titled For The Secret Club of Extreme Parenting and the opening paragraph read like this:
There is a secret club amongst caregivers.  Sometimes the experience of caregiving is so extreme, painful, dangerous and exhausting that it cannot easily be described to 'normal' friends and family.  And when that extreme experience constitutes family life over time.... years, even.... that is when caregivers become secretive.  They give up on explaining their lives. 

I was reminded today that there are tribes within tribes of caregiving. The extreme end of the caring spectrum is so different, so inexplicable that it's nearly impossible for anyone to comprehend it who is a stranger to it. But I also realized that's OK. We have each other and we belong to many tribes. I was also reminded that caring for someone with severe disabilities is very different from caring for someone whose needs are less apparent. And all of us on some days, just want to be called just kids and Moms, me included!