I keep starting and stopping this column, and have been for more than a couple of weeks now, as I’m not sure how to approach it. Because it’s an unusual circumstance I find myself in after a lot of years. As I’ve written in the past, my youngest daughter is developmentally disabled and on the autism spectrum. And we’ve hit a couple of milestones for her which change things significantly for us as a family.
With her turning 18 later this year, we have been working on establishing guardianship, which has been a new experience. Not a bad one, mind you. It has been an education, and we’ve been fortunate to have some wonderful assistance in the process.
On another front, even more upending of the family dynamic, after many months on a waiting list, my daughter will be attending an away program. It’s largely the same, but different from the separation of sending a child off to college. With college kids, I’ve been able to send them off, tell them not to do anything so stupid they get arrested, and then end up asking them why they don’t stay at school on the weekends, because I see them all the time. With my youngest daughter, there will be more distance, fewer visits, and a lot more worrying as the parent of a vulnerable soon-to-be adult.
After shifting gears and going from a decade of showing homes as a REALTOR, to 6 years of insurance claims from a desk, my time where I have to be available for her after school for her is at an end. (Think of it as having to work remotely during COVID, except for 6 years instead of 18 months.) It’s almost an alien concept to me at this point, to not have to pre-arrange absences from the house, even if just to make sure someone is on hand just to run to the store for milk.
It feels ..odd. Maybe it’s a little unsettling knowing I have more options if I chose to start another act in my life. I’m no different than anyone else in that change is not always comforting. And maybe it’s also tainted with guilt, knowing that this is driven by my daughter’s absence in the household for what will be a long stretch of time while she works for the education and skills to live a fuller life.
It’s not like my college kids, who by their time to go to school, with their trail of laundry, dishes and high school attitude, I was quite sure they could go to school and leave the house. Anytime.
With my youngest daughter, there’s mainly trepidation. I can read everything I want about the people we’re trusting with her care, but that’s trust and not a guarantee. But that trust is placed with hope for giving a kid with some tough disabilities the skills to find a place in society.
If there is anything I have a greater appreciation for, it is the dedication of people who work and serve the disabled in South Dakota, especially those who work with those with developmental disabilities. We were fortunate enough to be served by South Dakota’s family support services and managed to have some outstanding companions for our daughter over the past several years. Without the companionship program, our daughter’s world would have been much smaller.
Moving forward, as we hope for a larger world for her, my family has to trust and hope that we can bring that better life to fruition.