Jack’s Story By Indaia Whitcombe
Jack is thin and lanky, with light brown hair, pale skin, and a dash of freckles across his nose. He is arguably the
Jack is a ten-years old, and along with autism, he also has a visual impairment. It is clear that his large brown eyes
best-dressed young man at the club, arriving each afternoon looking sharp in a collared shirt and sweater vest.
do see something- perhaps a combination of shapes, color, and light, but nobody knows for sure. He attends a
Meeting him for the first time, Jack appears timid and hesitant, lowering his head and speaking in a barely audible
school for the blind and in the afternoons he is dropped off by his grandmother at the Boys and Girls Club. In the
tone. But it isn’t long before he is clapping and singing and yelling at the other children to “slow down!” when they
beginning coming to the club was very challenging for Jack. With three floors and over 200 kids, long hallways
are running in the hallway.
and echoing stairwells, the place can feel overwhelming, particularly if one is sensitive to stimulation through sound and movement. Among the staff, Jessie is a bright and passionate young woman whose position as the ‘inclusion facilitator’ at the club, plays an integral role in the experience of the place for all whom are a part of it. A big piece of Jessie’s job is working with kids on an individual level and supporting them in their specific needs. In the early months of Jack’s time at the club there were many hard days. He would want Jesse to stay with him all the time, or would refuse to go to activities and sit stubbornly slumped in the chair in her office. The only thing that seemed to appease his aversion to being there, was to sit out on the front steps and watch the buses arrive, dropping off the other kids.
He’ll crack jokes with the staff leaving them both in fits of laughter, so much that the need to repeat the interaction seems all too necessary. If Jack knows you and you’ve entered the room, after a moment he’ll sense your presence and recognize that you’re there. Then he’ll start to sing to you, sing your name and ‘how are you today, is it cloudy, is the day almost over?” And for some reason, you always feel obliged to sing back. To enter a room where Jack is, one will almost always find a group of singing, laughing people, with Jack at the center of it all. When he wants to talk, he’ll grab your arm and take you in close; it is both intimate and immediate: the ability he has of pulling you into the moment whether you are ready or not. When he gives you his attention he gives all of it, and it makes you feel important- like you matter in that place, on that day, in that moment.
Jessie likes her job. She gets to really know the kids and in doing so, she is able to see the growth that can happen when they are given individual attention. She also believes that changes made on a broader level could make a difference for not just these kids, but for everyone. “It’s called the intelligence of universal design,” Jessie says. The concept was born when public buildings were amended to be ‘handicap accessible.’ Someone said ‘Wait- we need to start designing our buildings differently.’
To assist Jack in his experience of the club, Jessie created a personalized visual schedule for him. He could choose from the schedule what he was going to do that day and carry it with him wherever he decided to go. After some time, Jack managed to be more independent, navigating the hallways all on his own. There were still those hard days, but they became less frequent. Jack had developed a sense of agency in the space. Together, he and Jessie had figured out how to make the environment meet his needs.
They found that when they started to change the design of buildings to make them fully accessible, they became easier for everyone to use. The education world adopted this term and began to design teaching methods and curriculum that were accessible to all. They were made to address different learning styles, and while they were thinking about students with disabilities, they found that when they used universal design, the curriculum improved for everyone. Jessie believes that the same principles of universal design can be applied to everything.
Regardless of whether it’s to a building or a curriculum, it becomes accessible for students with disabilities- but it is also made better for all- better for teachers and parents, better for students, better for the community, and better for society as a whole. “We need to shift our thought process from being better at accommodating a certain child,” she says, “and think about it as, we’re being better at serving all of our children.” Getting to know Jack and learning more about autism, I came to see how innately curious he was about the world around him, and how distinctly different his experience was from the rest of us.
There are some classic behaviors associated with autism, but these are also expressed across a spectrum of intensity. One of the main characteristics of autism involves routine or repetitive behaviors, like repeating words or actions, or playing in repetitive ways. Jack clears his throat, he smells the back of his hand, and touches his hair. He asks what time it is, and then he will ask again, only minutes later. And then again when that minute has passed. In realizing that neither world is more ‘real’ or ‘correct’ than the other, it seems in a way illogical, to think how we hold expectations and demands for these kids to learn to act and communicate in ways that meet our needs. Jessie’s
He likes to watch the clock, the second hand making one full circle, and when it has he’ll ask, ‘What time is it now?” Jessie describes this as ‘mind-looping,’ a self-soothing behavior. While ‘mind-looping’ and other self-soothing be-
work is about trying to bridge this gap.
haviors are common in autism, they are not specific to this disorder, they occur in many different developmental
In wanting to better understand Jack’s world, I had a lot of questions about autism, like why there are many different
and over-stimulation in general. When he asks what time it is repeatedly, it’s because he wants to know how much
forms of autism and yet each child is still labeled with the same disorder. When I asked Jesse if she could define autism in her own words, she laughed a little, as if the idea was absurd and responded with a sincere ‘No.’ Autism is a spectrum disorder- meaning all cases fall under the umbrella of autism, somewhere on the spectrum. No two cases of autism are the same; they vary widely in terms of the child’s abilities and traits, and they can look very different. One person who has autism may show no obvious signs at first. He or she may communicate verbally and display a high level of intellect, but have an inability to make eye-contact when engaged in conversation. On the other hand, another person with autism may have little or no ability to communicate verbally and may have severe behavioral challenges because of this.
disorders and are a fairly typical trait. Like a lot of children with autism, Jack gets extremely overwhelmed by noise longer he has to be in that environment. The question comes from anxiety and uncertainty. The answer makes him feel better. He may ask the same question one hundred times, in order to get the same response one hundred times back.
I think about why I make pictures. A lot of the reason is to make sense of my experience and what is happening around me. It’s the same reason I enjoy writing, so that I can say this happened, this was real, and see the words on the page in front of me. It is an attachment to moments and to experiences that have in some way shaped who we are. It’s how we affirm our memories- through pictures and pages, and the telling and retelling of what has happened. And in doing so, aren’t we simply reaffirming our own lives, again, and again. Isn’t that a self-soothing
Jessie says she doesn’t buy it when people say, ‘we need to ignore those behaviors because they’re not typical.’ “I think they are typical. Other people just don’t say it out loud. I think we all want the same reassurance. Everyone has times when they feel worried or overwhelmed and we all have different ways of coping with those feelings. There’s a lot of things in the world that are completely out of control and maybe kids with autism have that feeling magnified. We keep calendars and planners so that we can know what’s coming up.These kids need that too, just in a shorter time frame. That’s why we use a lot of tactile things and visual aids, like a schedule you can carry around with you. It’s a lot easier to hold onto than something that’s in your mind.”
Jessie talks about her sister Martha, and how she carries a stack of photos with her wherever she goes. No one is allowed to see them or touch them except for her. She knows what order they’re in and if one is out of place or has gone missing. The pictures are the way she communicates, and the way she keeps track of memories, and people, and things she knows she likes to do. Martha has a rare chromosome disorder and struggles with communication. She can say the names of the people in her family and the word ‘no,’ but for the most part her verbal skills are limited. She communicates in sign language, signs she has made up herself and that Jessie and her family have learned. And she uses the pictures; she won’t go anywhere without them. “For her it’s connecting the mental memory, to something physical and visual, and in a way, something that’s real to her.” There is a picture for her family, the school bus, and the church. There is a picture of the candles at church, the ones Martha gets to light every Sunday. She uses that picture to ask if she is going to get to light the candles again. Its the thing she asks about the most, and Jessie is always ready to answer because, she says, “it makes Martha happy.”
Martha struggles with a lot of behavioral challenges because of her frustrations with communication. She hits peo-
She said it was as if she were trapped in an autistic body, one that she had no control over, that it was like she was
ple because they don’t understand what she was trying to say. Jessie emphasizes that not being able to commu-
in a constant fight with her brain. She said she wanted to go to school with ‘normal’ kids, not be stared at, to be
nicate verbally, doesn’t mean that you are not having important thoughts and feelings.
treated just like everybody else. Autism research has made headline news recently, citing that one in every eighty-eight people now receive the diagnosis 1. This is a dramatic increase in comparison to years past. It is not completely clear if the increase in diagnoses is due to a rise in public awareness, an expanding definition of autism, or an actual increase in the cases. It is quite possibly a combination of all of these factors. In any case, one thing is undoubtedly true: that autism is no longer a disorder affecting a select few. That boy who has autism is likely a neighbor, a friend, or a son.
She told me the story of a girl who was diagnosed at a young age with severe autism. She was unable to speak and seen as mentally impaired until one day when she reached over a computer key board and began to type exactly what she wanted to say. She expressed herself in complex sentences, she had an incredible sense of humor and she knew much more than anyone had given her credit for. She explained a lot about autism, why she did certain things and what it felt like.
This makes the concept of ‘inclusion’ look that much more important. It is our obligation to make an effort to better understand these individuals as they are now a growing part of our society. There is a room at the club that was built to look like an old log cabin. The walls are made of actual pieces of split timber. There is a fireplace and wooden benches and there’s a nostalgic feel about it, like memories from summer camp. 1
Autism Society. Autism Society- facts and statistics. Web. 23 September 2013.
On most days this is where Jack spends the last period, before he gets picked up and it’s time to go home. Jack likes the cabin room, I imagine for a lot of the same reasons I do. It gets good afternoon light, and it has a nice smell, like pine trees. But most of all, Jack likes the cabin room because he can watch the cars. The windows in the room overlook the street below where the cars are pulling up to the club and the bus stops frequently. In the past few weeks Jack has been having trouble on the bus. It comes to pick him up each morning for school and he is the only one on it, him and the bus driver for the whole ride. He doesn’t have any trouble on the way to school, but when he’s dropped off at home at the end of the day, he refuses to get off. He throws his backpack and hits the driver. He becomes agitated and upset. So earlier that afternoon Jesse sat down with him in her office and tried to work it out- what was happening with the bus and what was making him so upset. “It’s a problem,” Jack said, sitting in the chair aside Jessie’s desk. But it was hard for him to say why. “Is the bus driver nice ?” Jessie asked. “Yes,” Jack said. Jessie took out a piece of paper and a box of colored pencils from her drawer. She began to draw. “Jack,” she said, “this is your bus, ok, and here’s the driver.” She drew a man at the steering wheel of the bus she made. “Is he friendly?” “Yes,” Jack said. She drew a smiling face on the driver. “And where do you sit?” she asked. “Up front,” Jack answered, and she drew a little face at the window behind the driver. And then, pushing the paper across the table, she made the sound of an engine. “Here comes the bus,” she said, “it’s going to pick you up from home and take you to school, ok?” “Yes,” Jack said. After five o’ clock there is a steady stream of traffic.“What car is that that just pulled up?” Jack will ask. He wants to know what color it is, and if they’ve parked, and if someone is getting out. He hears the bus go by. “There goes the number eleven,” he says. He clears his throat and smells the back of his hand. He announces each time another car has pulled up in front of the club. And in between he sings the names of all the people he knows in the room, with a different tone and melody for each person
He is calm, staring at the floor but listening intently. “Now, it’s the end of the day,” Jessie says, “The bus is picking you up and taking you home-” “No,” Jack says firmly, sitting up now, “No.” Jessie stops and waits for him to speak. “No- the club,” he says, “wit-with the other buses.” He stutters a little trying to piece together his thoughts. “The other buses,” he says, louder now. He sniffs at the back of his hand. “Like the other busses drop off the other kids- at the club- with all the other buses and the other kids.” It takes a moment, but pretty quickly it is clear what it is he’s saying. And everything Jessie has talked about becomes suddenly much clearer. It’s not just Jesse who wants Jack to experience what other kids are experiencing, and it’s not just his grandmother either- it’s Jack himself. He wants to ride the bus like the other kids and be dropped off like the other kids. He wants to get off the bus each afternoon and know that there are people there, watching and waiting for him too. Back at the window in the cabin room, the sun has disappeared behind the buildings, and Jack wants to know what time it is and if the street lights have come on yet? He wants to know if it’s going to rain tomorrow. “Is the day almost over?” he asks. “Was it a long day?” And then, almost as if he is reassuring us both, putting his hand on my shoulder he says, “but tomorrow’s another day, right?”