But occasionally I delve into our experience with Wolf. Yesterday's show was centered around Autism in Alaska; rates of diagnosis, special considerations for rural communities, and a post by me. The show's producer is always interested in our lives, what we are doing to mitigate Wolf's difficulties, his future, and such. She asked me if I'd write a short essay about Wolf's 18th birthday, and I did.
It was, surprisingly, one of the easiest pieces I've ever done. Here it is (sorry for the small print):
"The afternoon my oldest son turned eighteen, I cried. Nose-running, chest-heaving crying, with wretched tears that froze on my cheeks as I ran across snowy trails near our Anchorage home. It was a day I had dreaded with uncertain anticipation. Suddenly, it was here, and I was still not ready.
My son, like so many children, suffers from and fights with an autism spectrum disorder frequently referred to as Asperger Syndrome. Characterized by an overdose of impulsive behavior and an under-dose of social skills, my son, MJ, is nothing if not the Weirdest Kid on the Block, a label his stepfather and I have mostly been able to shield him against with all our parental powers.
At eighteen, MJ and thousands of Alaska children are considered officially “adults” in an academic sense. They can vote, boys must register for the Selective Service, and a flurry of college information fills the mailbox. It is a time of independence, either real or perceived, and our son is no different in his zeal for all the honors and benefits of finally becoming “old enough.”
But MJ has no idea what “old enough” really means. A resident of an out-of-state treatment facility since 2008, MJ has struggled to learn the most basic of social skills; from merely parroting a “Hi, how are you?” phrase, to practicing regular hygiene and grooming habits. It is an agonizingly slow process, filled with false starts and backward steps, and little, tiny inches forward. Staff at his current residence are infinitely patient, yet firm; they know better than we how the world sees young adults like MJ, and they want him to get this right.
It was almost easier to manage MJ as a young child; at least then I could reinforce with the authority of a typical Aspie Mom. But at eighteen, a difficult decision awaits parents of children with disabilities. Along with figurative independence also comes the literal and legal meaning of the word, and MJ, for better or worse, was now able to make decisions regarding his health and well-being. He could, in effect, sign his name on the dotted line of discharge forms and go about his business in Denver, Colorado with no one lifting a finger to stop him.
The decision to establish guardianship was made shortly before his birthday, after hours of conversations and meetings and prayerful discernment. Guardianship was granted shortly after his birthday, with little resistance but not without confusion on the part of MJ, although we explained over and over our reasons for wanting to keep him healthy and safe. What we didn’t tell him was our intention of saving him from himself, because for a young man today to appear “odd” or “looking funny,” statistics of violence and police intervention almost immediately stacked the deck against our 6-foot, two-inch tall young adult.
To his credit, however, MJ is finally pushing back at the darkness which has threatened to consume his soul as a younger teen. He sees, if however tenuously, the connection between how one looks and acts, and how people treat each other accordingly. He will graduate from high school with a fairly high grade point average, an amazing feat considering he has had so little success in other aspects of his life. Our family is working with a team sent from heaven at the Arc of Anchorage, who do not shake their heads in the negative when I mention potential roadblocks. Arc staff will teach him how to ride the bus, be successful at a job, go shopping, exercise, and be happy with who he is.
With so much left to learn, I sometimes look at this man-boy during our internet face time and wonder how he has managed to hang on for so long. Perhaps it is my husband and I who need to step back, recognize his courage, and allow him to own his future, instead of asking ourselves for the millionth time, “Why did this happen?”
One of my literary heroes, Norman Maclean, author of “A River Runs Through It” explained it perfectly to me one day in his book, as I sat on an airplane, whizzing through the sky after a particularly meaningful visit to MJ:
“...And so it is those we live with who elude us. But we can still love them - we can love completely without complete understanding.”
Perhaps this journey of maturation has not only occurred in our son. Eighteen is, after all, only a number, and we have a lifetime yet in which to grow."
Erin Kirkland is a regular contributor to Kids These Days, posting weekly at KTDontheGO. Read more about her family’s journey through Asperger Syndrome at “Elituq: She is Learning” (http://www.elituqakbrady.blogspot.com.
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