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.
Good luck as you and your daughter both transition. “What is life, if not a series of leave takings”. That is a line from an Arthur Miller play, “Death of a Salesman”.
As my children have grown and moved on to adulthood, I find myself remembering that line.
I urge you to take advantage of all the services and professional expertise that is out there. Please realize that when I started out in the Disabilities field in 1968, there were literally just skeleton services available. I believe there were 8 school districts with high school Special Education Programs and four adult community programs in the state. Parents fought the political system long and hard to establish local programs…over 1300 developmentally disabled, autistic, and people with cerebral palsy were institutionalized in “human warehouses.” Those parents endured abuse from politicians, administrators, and state bureaucrats, but they succeeded in producing the change in attitude and funding necessary to develop the current network of services, which may be adequate but certainly could bear improvement.
I urge you to fight on and be a “Happy Warrior” and join others in the same situation to advance human dignity and insure the rights of all people to achieve to live, learn and work in their local community. There is dignity in risk.
I hear your heavy heart of uncertainty with turning your dear daughter’s control over to others. I too would be filled with apprehension if I were in the same situation. No doubt you have thoroughly researched the next chapter for her and feel it’s best for her future, even if does leave you with fear and trepidation. It is certainly a brave and wise choice to offer her the best tools to make the best of her life. Wise decision dad!!!
I was at the Brule’ concert at Levitt the other night. Among the thousands in attendance were dozens of people with varied handicaps and they too seemed to be having a good time. It appeared that they had good access and were treated with dignity.
I’d like to think that we’ve made a lot of progress in the last thirty years in regards to the handicapped. I know we have. Before the Americans with Disabilities Act and other efforts, dismissing them or mocking them was way too common. I remember friends and relatives being on the receiving end of it.
The world will never be perfect. But, in my opinion, your daughter is in a better time than those who came before her. I know you will get her the care she needs. And I wish her all the best.
You’re doing what you can do. Searching, reaching out, exploring good people who dedicate theirs lives to building community. We aren’t good “loners.” We’re all in this together. Best wishes to you, your family, and your “littlest”, Pat.
I identify with all you’re feeling, thank you for sharing. We too are currently going through the motions of obtaining guardianship of our high school senior. I am thankful she is our oldest as I will have our other 2 to still occupy my time.
I have thought so much about my children and so much of the cherished energy and time I have given to them and with them. What will happen when they are no longer home?
Each child is a puzzle. We as parents, need to help them discover how their puzzle fits together so they know how and where to add the pieces as they grow.
Kids with special needs are puzzles with extra pieces that are always changing. It is our job to keep track of all the pieces, anticipate the new pieces, try to keep the pieces together that fit one day but then maybe not the next, try to help everyone in their lives understand their puzzles, and to try to guide our son/daughter how to adjust pieces when they don’t want to adjust. Sometimes they want the glue.
When you are needed to have so much control over your child’s life nothing about trusting someone else, with that same role, feels comfortable. Especially, your baby. I imagine the last one to leave is usually the most difficult anyway. I hope this experience is good for you and, with time, you are able to trust her and the people surrounding her.
They common words to say is, I have a child with “special needs”, however, every child and adult has their own special needs. You and I have seen that all our children are different and require different things. Your older children will soon have needs of you that weren’t there before and you will have a new role so, don’t get too comfortable with the free time. Just as your role with your other children are changing, so is your role with your daughter.
You’re leaving a world of sole caregiver and entering the beautiful friend zone. Your daughter will flourish with the new opportunities and friendships she will discover and you get to enjoy the woman she becomes. Always your baby but now also a friend to watch in amazement. I pray for the best for all of you.
You are an amazing dad and have done a wonderful job, congratulations on this new adventure.