DHR Guest Post — Happiness, Good Health, and Independence

This post is a guest article I was asked to write for the Iowa Department of Human Rights.  They were interested to hear some thoughts on employment of disabled people from a parent/caretaker perspective.  As Koan turned ten this week, I’ve already been thinking a bit about what the next ten years (and beyond) will look like…

Koan, my youngest son, has global developmental delays.  He is ten years old and doesn’t walk, talk, or feed himself.  No doctor or specialist has been able to tell us why these delays happened.  We named him for the answerless riddles or parables that Zen monks meditate upon to reach enlightenment.  We gave him this name before he was born and long before we knew he would face these types of challenges.  It is, of course, a very fitting name.   While it’s been a wild, wonderful adventure raising Koan, I do have some anxiety when I think about what his life will be like after he is finished with school.  To be fair, I have two other children who are not disabled, and I worry about them a lot, too.  

My three main goals for Koan are happiness, good health, and for him to be as independent as possible.  While I don’t want to over-simplify anything, these are really the same goals I have for all three of my kids — including the two without disabilities. These global concepts have really helped my spouse and me in our decision making processes.  We are now better able to focus on the important, big-picture items, and we don’t get bogged down in the unimportant details and minutia. This clarity of purpose has been of the many great gifts Koan has given our family.  

I’ve spent a good deal of time thinking about what life will look like for Koan once he completes his K-12 experience.  I find that I need to resist the temptation to over plan or over think his future.  I certainly do want to be prepared for whatever opportunities he may wish to pursue as he gets older. And, of course, because of his disability, we need to a lot more thoughtful about his future — setting up a trust, launching an ABLE spending account, looking into group living options, etc…   But, at the same time, I also don’t want to pigeonhole him or put him down a path that’s not right for him but makes sense to me. Just like my other kids, he will need to find his own path.  We just need to give him space and time to do that.  I can provide some guidance, but just like with his brother and sister, it’s really on him to figure out what he wants to do and how to leverage and take advantage his strengths.  I merely hope to set up the circumstances to make that possible.

One of the main characteristics of independence, at least in my mind, is employment.  Ideally,  for Koan this would mean competitive employment.  Having a meaningful job not only contributes to financial stability but it, more importantly, gives meaning and purpose.  It instills a sense of confidence that only comes from doing real work.  That feeling of “mattering” ripples into all sorts of other roles in life that have a tremendous impact on well being, too. Competitive employment is one of my highest and most rigorous aspirations for Koan.

While I’m not ready to lower my expectations, I also need to acknowledge that Koan may not be able to attain the goal of competitive employment if he stays on his current developmental trajectory.  And, if he doesn’t reach that milestone, I hope that there are other, non-competitive, employment opportunities available for him.  A “sheltered workshop” should certainly not be the first choice for anyone with a disability.  But, that type of non-competitive environment can provide a great deal of social interaction and meaning if a competitive job were not an option.  What I know about Koan as a ten-year-old is this —  he would find a lot of joy working and interacting socially with others even if it were on tasks that others might find less meaningful.  So, my hope is that when Koan finishes school he has a full array of options and opportunities available to him.  And, again, this is really not all that different than what I want for all of my kids.  

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