Friday, January 28, 2011

On Autonomy and Establishing Guardianship for My Adult Son

Kim Wombles

My husband and I obtained guardianship of my bright boy when he was approaching 18 years old -- the legal age of adulthood in the US. Bobby has a blood clotting disorder which lead to a stroke at aged nine, which left him with significant cognitive disabilities.

Bobby's certainly an adult, but he has a cognitive impairment; he can't spell more than a few words despite many long years of working at it, can't do double digit math.

He is my son, my bright boy, and while I accept and celebrate that he is an adult, the truth is that he is an adult with a cognitive impairment that requires he have assistance. We work very hard to find a balance that allows him the opportunity for growth, to reach his potential. We work very hard to allow him as much autonomy as he is capable of, but it is my job as his parent and his legal guardian to stand between him and those who would take advantage of him. It is my job to make sure he is in a safe environment, he is happy, he is doing what he wants to do with his life.

I take my responsibilities seriously. It is a constant balancing act, and my husband and I regularly reevaluate our decisions. Our experiences as our son’s parents have paved the way for our parenting of our daughters. We didn’t have the steep learning curve that we did with Bobby; we didn’t have the struggle to learn about autism, understand it, or accept it. We’d already done the heavy lifting. I am not where I once was, and I suspect that many parents who’ve been around for a decade or more aren’t. There are some autism bloggers who give us daily reminders that not everyone gets off the pity party, not everyone decides to see the good, to learn, to grow, or hell, even to take a real good look at themselves and their loved ones and realize that there’s a great deal of us in our kids, that we are bappy (broad autism phenotype—it really is a spectrum!) folks ourselves, if not skirting over into autism itself. When we see ourselves in our children, if we have accepted ourselves and our issues, we have no choice but to mirror that with our children, to see them, issues and all, and to love them completely.

Yes, there are serious issues that parents of autistic children face; serious issues that autistics face, as well. Denying these struggles does no one, autistic individuals included, any good. Not every child will overcome the obstacles the world and their neurologies present them. All the acceptance and appreciation in the world will not take a severely impaired child with accompanying medical problems or cognitive impairments and render them independent adults. Not facing that is a tremendous disservice. It ignores the reality that my mother faces each day at her work as a nurse at the assisted living center, that my husband saw every day for two years when he worked as direct care staff there. It denies those individuals their reality, if we assert that there is some potential gone untapped if only someone had tried harder. Accepting people as valuable members of society for who they are means accepting their realities, their neurologies and issues. And then busting our asses to make sure that those who need 24 hour care get the very best care there is, that they are respected, protected and allowed as much autonomy as they are capable of.

There are real questions about how parents balance the need to protect their children from bullies and the harsher realities while still promoting autonomy. How do they display sensitivity to the integral part that autism plays in the child's identity while acknowledging that not everything about a person is due to autism? How do autistic adults provide feedback to parents to guide them so that the decisions parents make are made with an eye to the future self their child will be, so that harm is minimized?

Before Bobby was homeschooled after his stroke at age 9, I was in the school with him many days, working hard to help him get the accommodation and assistance he needed. After his stroke, I was with him all the time, providing all the attention and assistance possible. I assure you, if a mother’s undivided attention and the right attitude were all it took to make an individual fully capable of independence, my bright boy would have had it.

If we are not free to admit where we once were and how we have grown as our children have taught us to see the world differently, then how will we move towards changing the world and making it a better place for all people, regardless of their issues? Admitting our mistakes and learning from them is a vital part of growth and development.

This essay was adapted from adapted from