My daughter, Katie, is 25. She’s a beautiful young woman, happy, social, into music, loves to dance, and is eager to be out in the world. She also needs help with all self-care, is limited in her ability to communicate, especially with people with whom she’s not familiar, doesn’t know numbers or letters, and would walk away with anyone who seemed friendly. Increasingly, I find myself wondering, “What does it mean to parent Katie as an adult?”
Katie’s the youngest of three, and I’ve had some experience guiding her two older siblings into adulthood. Over the years, that’s meant finding a balance between keeping them reasonably safe, and at the same time affording them the freedom to take risks and fail. At some point I had to accept that I’d no longer know all the ways they chose to navigate their worlds, and that some of their decisions I’d agree with, and some I wouldn’t. For me, however, being able to step back so that they could step forward on their own has had a lot to do with trusting they had the skills – or at least a reasonable foundation of skills – to understand rules and consequences, handle the unexpected, solve problems, and know who to go to for help. Walk to a friend’s house alone? Yes, if I thought they could look both ways before crossing the street, and even that didn’t necessarily mean yes to also crossing the busy intersection in the center of town. Of course learning and developing skills doesn’t happen in a straight line, and children who know the rule for looking both ways can still forget when it’s their ball that’s rolling across the road. And certainly there were moments, perhaps most especially when they started driving as teenagers, I just had to hold my breath and hope for the best. Still, even at my most worried I had some trust in the range of abilities they had demonstrated up to that point, and figured these helped to at least raise the odds in their favor.
With Katie, it’s different. It has to be. Even if some of her interests are what one would expect of a 25 year old, almost none of her skills are. Despite working diligently for years on how to look both ways, she will step into traffic without so much as a glance if I don’t remind her to stop at each and every street crossing – and sometimes that means also grabbing her hand to hold her back. She cannot tell me about her day with any real accuracy, including if she’s been hurt or upset. So while I know I need to respect Katie’s own growing need for independence and adult status, for me, this means trusting not her skills, but the skills of the people who care for her.
An adult life out in the community inevitably means less structure than at home or school, and many more opportunities for Katie to interact with people in a wide variety of unpredictable contexts. It’s how it should be. It’s how I want it to be. And yet I also recognize that as her father and I age, finding that delicate balance between choice and risk will, increasingly, be in the hands of other people, including direct support professionals (DSPs). It can be – no, it is – scary to contemplate such a leap of faith. There is, and always will be, a vulnerability to Katie that can’t be ignored. And yet, over the years there have been many DSPs – including in her Blossom Philadelphia program – who have impressed me with their extraordinary level of commitment to, and genuine caring for, her well-being. They make it possible for Katie to connect to the world beyond our home in ways that add great joy and meaning to her days.
There are of course no guarantees that life will work out as I hope for any of my children, and “letting go” will always involve some degree of holding my breath and hoping for the best. But for Katie, raising the odds in her favor means having compassionate, thoughtful, well-trained, and fairly compensated DSPs to support her as she navigates the complex world of adulthood.
Next post, some thoughts about community inclusion…