Breath & Shadow
Fall 2010 - Vol. 7, Issue 4
"Twenty-Eight Years and Counting"
Marilyn Brandt Smith
My son Jay is playing a futuristic computer game. We’re in his basement apartment where I’m thumbing through business papers we store there. "Jay," I ask, amazed at his immediate response to an auditory question in his game, "How can you know so quickly that July forth, 2032 will fall on a Sunday?"
"Mom," my thirty-two-year-old son Jayson sighs, "Like I said, every twenty-eight years you’re going to have the same weekday and date patterns. So I just had to go back to 2004 which I know by heart. “If you want to know about 2008 and you don’t have a calendar, just think back to 1980….”
“1980?" I laugh.
All I remember about 1980 is that I was a busy mom with two preschool kids.
Jayson was born three weeks early. Since my husband and I are blind, it was no surprise that he inherited my glaucoma. He has enough vision to enjoy bright colored lights. We knew he would be a "special needs" child, and were not alarmed when he walked a bit late. His speech was right on target until ear infections slowed his progress.
While he was in preschool, we realized that he had some unusual talents. He told us the bus horn honked in B Flat. He figured out his favorite tunes on the piano and sang harmony with them. We knew it was not a good sign when in play groups he did not interact with his peers, but Asperger’s syndrome had not been identified at that point.
We tried to blame it on his blindness and to believe that he would grow out of it. By age five he had learned all the states and capitals. His sister was furious because she was still struggling with them in fifth grade. His spatial orientation was good, but we noticed that he fixated on statements, sounds, and numbers, repeating or imitating them ad nauseam.
"No! No! Get away! Get away!" he screamed if he accidentally touched a pompom, fuzzy rug, or unwound cassettes "tape stuffing."
We tried schools for the blind and public schools for our "wunderkind." He would not do teamwork and sometimes "stonewalled" when he did not like an activity. Two unique abilities earned him the respect of his peers. "Make that Martian guy tell us something, Jay," his buddy Clifford would ask. Jay punched a few keys on his talking note taker and produced a typical third-grader’s evaluation of the boring geography lesson he’d just heard. He loved the attention and the laughter. He also managed to earn in-school suspension for his belching prowess:
"Do it again, Jayson! Come on, do it! She’s not watching!"
Once in sixth grade he refused to go back to class after lunch. The eighth-graders came into the cafeteria to hear a program about high schools they might attend. He sat peacefully in a chair throughout, but was sent home with some in-school suspension time ahead. Of course we went through the usual "Why didn’t you go on to class?" and "What upset you?" questions. Then he started telling us about the high school choices in Louisville. For a lark, I asked him to write it all down. I was amazed at the comprehensive and clear understanding he demonstrated, so I sent it to school with him the next morning. The counselor admitted that she had no idea he was taking anything in. The snippy teacher had to remind us it was still a negative experience.
"If he thinks he can attend one of our magnet programs in two years he has another thought coming."
So much for our efforts to enlighten the educators. I fear that is the story when many parents attempt to find a positive trait expressed in an unusual way in a child with complicated behavior and learning issues.
We seldom had behavior problems with Jay, although I don’t think the school believed us when they asked. He has always seen us as the ultimate authorities in his life. Jay was not diagnosed with Asperger’s Syndrome for years. He was hesitantly slipped into the crack between Attention Deficit Disorder and "Normal," whatever that is. By the time he was in high school Asperger’s was becoming a "preferred label" for kids who didn’t fit anywhere else. It was easy to see that his patterns of behavior and learning were within the guidelines.
Asperger’s Syndrome is categorized with Autism. On a spectrum containing variously labeled patterns, it is usually considered one of the milder manifestations. Kids frequently exhibit repetitive and persistent fascination with words, behaviors, toys, or technologies. Socially, they may withdraw, or they may question, comment, and jabber. They often don’t work well in a group setting, and prefer self-directed activities. They may have mannerisms or other behavior patterns that inhibit acceptance by their peers. Behavioral therapists can sometimes help direct changes that make education less frustrating, but the therapist who tried talking to Jay about his problems in school met with resistance and gave up after a few sessions.
Jay is my Internet guru. We started programming lessons for him at eleven, because we saw his talent emerging in computer classes at school. He was able to fool his teacher by using computer Braille. She thought he handwrote his math homework. He wrote a program which cut his spelling homework time to practically nothing. Still, he passed the tests with flying colors. Obviously he was a whiz at keeping secrets.
Telephones, obscure tape recorders and calculators, game shows, and garbage trucks have all captured his fancy. His sister arranged a surprise ride in a garbage truck so he could learn how the compactor worked.
"Too bad," he grumbled.
"It was empty, so they didn’t really squish anything."
Still, it was his favorite birthday present.
When an old analog trunk system was being replaced in Wawina, Minnesota, he was one of the last folks to create the 2600 Hz tone that disconnected calls. He produced it with his lips, with a bendable straw, with his synthesizer, and with a computer program. That was considered illegal access to the long distance network until Bell wised-up and changed the system. He recognizes and remembers touch tones, so be careful with those pass codes.
Jay loves amusement park rides and water parks. Our driver Tracey has that same addiction, so every summer they head for a new park in our motor home. His motionoriented mannerisms are also fed by such fun as swinging and bouncing around in the waves and tide at the beach. Unfortunately, he is one of those "dudes" who enjoys grinding Styrofoam, squeaking rubber shoes on tiles, and hearing glass shatter. His brother-in-law saved some burned out fluorescents and broke them on concrete to make Jay’s day.
He loves to hear slot machines that beep and chime as they count the coins. He was too young to be allowed in the casinos when we went to Vegas. We took him in and let him listen until security threw him out. Once we were finishing up and he was standing outside the area. Cleopatra spotted him and gave him a hands-on explanation of her costume and royal regalia. We figured out what was going on and dashed over to get our own touch-and-see opportunity.
At thirty-two, Jay is still creating programs and writing manuals for people who can’t understand the one that came with their new product. He buys and sells on eBay, does all of our monthly book keeping and bill paying, and helps me edit my writing. He will run this document through spelling and grammar checkers before you see it.
Jay understands that he marches to a different drum. He isn’t looking for a girlfriend, but he likes to hear women with soft high voices. He calls them "sweet little spinach-eating beauticians." Don’t ask.
We can go on anniversary honeymoons and leave Jay at home. He can cook and do laundry. He knows what plumber, electrician or handyman to call in an emergency. We have a "special needs" trust in our estate plan, just for extra protection for him financially.
His favorite books are medical mysteries and science fiction. He even likes my poetry. Jay and his dad share basketball and baseball and keeping up with friends through amateur radio. He feeds and grooms the guide dog, unloads the dishwasher, and does a hundred other little things that help.
By the way, that twenty-eight-year cycle only works for another partial century. It has something to do with 2100 not being a leap year. If you really want to know, Jay would say, "Just look it up on the Internet."
Marilyn Brandt Smith holds degrees in English, education, and counseling psychology and has worked in rehabilitation in several states. She has written for and edited smallcirculation magazines and is the primary editor of "Behind Our Eyes: Stories, Poems, and Essays by Writers with Disabilities", published in 2007. Marilyn was the first blind Peace Corps volunteer. She lives with her family in Kentucky. E-mail her at: email@example.com.