Did you know that April is Autism Awareness Month? Did you also know that 1 in every 166 children in the U.S. has Autism Spectrum Disorder? Today on all three of my blogs we are talking about Autism. This is a guest post written by my neighbor Catherine Parry and her son Will:
Catherine and her son, the imaginative Will Parry
I write this as I sit beside my son in his tenth grade Human Biology class. He’s taking an open-book, multiple choice and true/false test over the evolution chapters he studied the past week. Based on his frantic page-flipping and worksheet rattling, I can see that I’m using the term “studied” loosely. Apparently this is one of those weeks when little information made it past his tympanic membrane (a term I picked up this year in Human Biology) and into his brain. I’m never really sure whether he’s paying attention to his teachers or not, because in classes he always looks as though he’s mentally escaped to Uranus. “Will,” I often say in an attempt to bring him back, “you’re on Uranus again.” “Mom, that’s obscene!” Only sort of, and it’s so fun to shock him.
For eight grades now (we packed it in for fifth and sixth grades and homeschooled), I’ve acted as Will’s aide in the classroom. The reasons for this unusual arrangement are various: suffice it to say that over time we’ve learned that it works best for Will. He was four years old and enrolled in BYU’s preschool when we received a call from the head teacher requesting that we have him tested for developmental delay. We were a little puzzled why she would think that our exceptionally bright son would need such a test, but he had been born ten weeks early (three and a half pounds), so we reasoned that perhaps her teaching expertise let her see delays that we thought he had outgrown. You can imagine our surprise, then, when the testers told us that he scored extremely low on all the tests. His best was math, on which he earned a 25%. As we left, one of the testers handed us a paper with three names, addresses, and phone numbers--the middle one circled—and said, “I strongly urge you to have him tested for autism.”
Autism? That was what the oldest child of my mother’s visiting teacher had had. He didn’t talk, spent most of his time sitting in a corner banging his head against a wall, and they put him in an institution when he climbed on top of the refrigerator and jumped down on somebody. That didn’t sound like Will. I’d learned in a college class in the 1970s that autism was caused by “refrigerator mothers,” who denied their children their nurturing warmth and affection, causing them to turn inward and shun human sociality. That didn’t sound like me, who was so excited finally to have a baby at age 39, that after his birth no other responsibility got its due time and attention. Nevertheless, as we walked from the building to the parking lot, carrying our short list of autism specialists, my husband and I knew that the tester’s informal “diagnosis” was correct. We learned later that she recognized the characteristics because she, too, had a son with high-functioning autism.
While we waited to see the specialist, we read about the disorder and began learning how to help our son. I won’t pretend that the bottom didn’t fall out of our little world. The exceptionally beautiful colors of that fall contrasted with our bleak inner landscapes as we read that a child with “mild” autism and no mental retardation would function in life as if he or she were mildly mentally retarded; that autistic people rarely marry or have children, and when they do, those marriages more often than not fail. We read about a young man with exceptional talent for enjoying and understanding beautiful music, who ended up sweeping the floors in a music library because his autism impeded his ability to finish school and cope with the pressures of a career. We grieved for the death of our son’s future as we had assumed it would be--scholastic achievement, a church mission, marriage, children, a career, church service--knowing now that such events would either not happen or would happen differently for him and us. There’s no use pretending, either, that our joy at the achievements of our friends’ universally brilliant children hasn’t been tinged with thoughts of what might have been for our own son. We began, though, to wonder fairly early whether we truly grieved for Will, or whether our parental egos grieved our inability to live and achieve through our child. The longer we have been parents, the more we have learned to distrust our motives for responding sharply if Will melted down in public, or for demanding obedience just because we said so. Will’s most challenging task may be training us to act in his best interest, without worrying about how our decisions affect our parental image.
None of these musings, though, give you a sense of Will’s eccentric charm and how interesting life with him can be. His often quirky interests have taken us through studies of bats, cacti, lemurs, volcanoes, and cephalopods (the family octopi belong to). At one time, thanks to Will, we knew more than any of our acquaintances about the mating habits of cuttle fish. When he was four, he was a firefighter. Assuming that was what he would be for Halloween, I asked about some costume detail, to which he replied that he wasn’t going to be a firefighter. Astonished, I asked why. “Because,” he replied, “for Halloween you dress up as something you’re not, and I am a firefighter.” One day during his pirate phase we became quite angry with each other, and he shouted at me, “You blackguard! You scurvy knave!” Often I learn unpleasant things about myself, like the time we visited the Louvre during a BYU Study Abroad. I unwisely decided he and I could manage lunch in their tearoom, but before I could catch him, Will darted away from me and ran smack into a French waiter carrying a large tray laden with dirty dishes which crashed to the floor. As he began swearing at us in French, I grabbed Will and fled in embarrassed panic from the restaurant, not stopping until we reached the anonymity of the gift shop several floors below. Not even the wrath of a wronged French waiter could keep Will and me out of a museum gift shop: for several years they were his favorite places.
As I finish this little essay, it is the late evening of an exceptionally full Sunday. Today, my fifteen-year-old son, who deals with the challenges of autism, bi-polar disorder, and obsessive-compulsive disorder, admirably fulfilled his duties as president of the teacher’s quorum in our ward. He arrived at church in time to help prepare the sacrament, attended a meeting in which they discussed how to help other kids in need, went with his dad to visit an elderly couple, and attended a fireside in the evening. Sure, he needed help shaving, putting on his tie, buttoning his cuffs, and as usual, he refused to comb his hair. In an attempt to be funny, he doubtless made inappropriate comments during his classes and the meeting, and he compulsively ate cookies after the fireside. So did I. None of Will’s mental challenges will ever go away, some aspects of them will even worsen with age, but in facing those challenges he has shown intelligence, courage, and determination. He is good natured, fun, and funny. He takes seriously his religious principles and duty to God, and is learning his duties to society, though those lessons come more slowly. I love him, and can ask no more.Catherine Parry is a wife, mother and professor of the English arts. She also happens to be the woman I want to be when I grow up. Or the woman I want to be right now. She's intelligent, unique and completely enjoyable. She's also my Relief Society President. You can read more about Will and his upcoming novel Chronicles of the Scarred by going here.
c jane's Guide to Provo
The Provo City Half Marathon & 5k benefits children with Autism find out how
dear c jane
don't miss this Jammin' Jen video--music therapy for children with Autism
(hint: you might cry like I did).