Echoes, Fragments, Song Julia Mitric Friday, March 1, 2013 THE LIST Freddie's life seems constricted on all sides. He's largely non-verbal. It's challenging to get a "yes" or "no" answer out of him. Freddie can't dress or bathe himself. He doesn't like water and hates having his teeth brushed. Unless his food is cut into small, soft pieces, Freddie can't feed himself. At meals, his mom must remind Freddie to keep eating every few minutes - or he'll just stop. Freddie can't tell his family what's wrong when he's sick or if he's been hurt. So Freddie can't be left on his own, unless he's in his room at home or sound asleep. There are other behaviors that make it hard to know how to approach Freddie. He seldom makes eye contact. If you sit too close, he leans away or shows other signs of discomfort. When he's extremely upset, Freddie makes a whining sound. Every aspect of Freddie's life seems to be defined by the severity of his autism. But you don't get Freddie if you simply list his limitations. Photo Slideshow View photo album on flickr. FRENCH FRIES If you would know one thing about Freddie, know about the french fries. The origin of the french fry situation goes back to 1994 when Freddie was a year and a half old. That's when Elisa Topete began to notice changes in her son. Freddie wasn't playing with his big sister Monica, whom he adored. He stopped making eye contact. He stopped responding to his parents. Elisa and her husband Fred Topete took Freddie to a child psychologist. He told them Freddie might be autistic. Fred and Elisa didn't know what that diagnosis would mean for them or for Freddie. Elisa read an article defining autism as a form of mental retardation. Elisa wept when she read the suggestion that Freddie would have to be institutionalized. The Topetes enrolled Freddie in public school special education classes. He didn't fit. Next, they placed Freddie in a private school with one-on-one instruction. Guided by his new teachers, Elisa and Fred began behavioral interventions with Freddie. Elisa remembers the first steps were difficult: "They really stressed for us to almost bark orders at Freddie, such as 'NO' or 'STOP' or 'FREDDIE' to get his attention. They said not to worry about stares from the public, this is what you have to do and they were absolutely right! It really got his attention and after awhile we didn't have to yell at all...little by little he started making eye contact. They also stressed teaching him "I want..." because he didn't have any verbal skills...it was difficult understanding each other those first five years. Once he grasped the "I want" concept, he said his first words: 'I want french fries.'" Four words. A breakthrough for the Topetes. Freddie was five. He got an order of fries that day. And most every day since then, for the past fifteen years. The french fries are part of an unspoken arrangement: if Freddie prevails over the obstacles of his day, he gets fries. It's not easy. Elisa says the hardest part of life with Freddie is "not knowing what he's thinking or feeling. I'm so afraid he's going to be hurt either physically or emotionally and I'm not going to be able to help him properly." When he's sick, Freddie will carry his blanket and move from couch to couch, around the house. If there are no obvious symptoms, Freddie gives no clue as to what might hurt, or what might be wrong. Elisa's gotten better over the years at reading Freddie. But her son's emotional landscape is still a mystery. If she enters Freddie's room while he's watching his movie, he might comment on a scene, saying, "Uh oh, he's sad" or "He's happy." But, she says, "If I were to ask him, 'Freddie are you happy or sad?' he would just mimic me and say 'Are you happy?' " Still, Freddie does seem to sense the feelings of people he cares about. When the kids were little, if Monica would cry, Freddie would put his head on his sister's shoulder. But Elisa says if Freddie sensed his sister was faking it, he'd hit her. Elisa describes Freddie at his happiest: he's watching one of his favorite movies in his room. Eating french fries. He sings along to "The Sound of Music," "The King and I" or "My Fair Lady." He's a big fan of "Lilo and Stitch" too. When Freddie's in top form, he runs laps from his room to the end of the house and back, smiling and laughing, quoting his favorite scenes. Beyond the basics of eating, bathing and dressing, there's the challenge of providing Freddie's care. When school lets out at two o'clock there's a gap: no adult day care from 3-6 p.m. Both Elisa and Fred work full-time. They juggle their schedules, taking lunch around two-thirty so they can meet Freddie's school bus. Two afternoons a week, both sets of grandparents take turns hosting Freddie so Fred and Elisa can go back to work. Monica fills in when she can - but she's in college and working two part-time jobs. It takes the combined efforts of seven adults to look after Freddie outside of school. Elisa comes across as a stoic woman and an intensely loving mother. But she is human - and not immune to frustration. Two years ago she flew to Las Vegas with Freddie. During the flight, he sat watching his movies, making his usual comments and sounds. Freddie has a deep voice, so people around him perceive him as a grown man. Three men sitting in the row ahead kept craning their necks to look at Freddie. So Elisa said, " 'I'm sorry, he's autistic.' They continued to turn around to look at him and I barked back, 'He's going to be autistic the whole flight!'" SINGING ALONG Freddie is like a "happy three year old, without the tantrums." Monica describes her younger brother as a happy, loving guy. She can say "kiss, kiss, Freddie!" and he'll put his cheek out for a kiss. They play together and she teases him. She hides behind the door to surprise him. Monica knows what Freddie likes. He loves certain kinds of focused attention from his family - like all the fuss over his recent birthday. And at Christmas, Freddie gets such joy out of unwrapping presents that his family lets him open everybody's gifts. Monica also knows Freddie's boundaries better than almost anyone. The precise placement of his toys, the way his VHS tapes and DVD's are stacked - there are rules. His shoes must go in a certain spot. Monica's always been with Freddie. She's adapted strategies to gain entry into her brother's inner sanctum. When you go into Freddie's room, don't make a big deal about it. Act like a fly on the wall. Assure him you're not going to mess with his stuff. On a good day, Monica says he'll let her sing along to one of his movies with him. But, for the most part, Freddie sets a very clear limit on their connection. Once Monica's been in his room for a few minutes, he'll let her know he wants her out. She says he'll sometimes shut the door on her. So while Monica begins by describing Freddie as a happy child, she does know there are differences. Other children might involve you in their game, they might show you a toy. In Freddie's case, Monica says she feels he'd really rather be alone. That's apparent when the family takes Freddie to the zoo, which is one of his favorite places. "But when we go to the zoo, we go to the zoo for him to do his thing. Not for him to talk with us or laugh with us about what's going on, but for him to walk around by himself. Like at the zoo, he'll walk at least like five feet ahead of you. So he doesn't necessarily want to walk with you; you're just here as like his guardian. You're here for the ride to get to the zoo, to buy him a toy because that's his treat when he goes to the zoo...and then to go home." Monica knows Freddie's behavior is defined by his autism. So when Freddie shuts her out, she tries not to take it personally. When Monica tells people her brother has severe autism, they think he has a moderate disability, because he looks "normal". She says people who don't know Freddie, don't understand his life. "(The) misconception is that autistic children are like these genius kids... I'm often asked when I say I have an autistic child, they're like 'oh my God, is he a genius at math?' You know, I don't know why, but I guess a lot of peoples' portrayal of an autistic child is they're like really keen or they hone in on one talent and they're really good at it... People understand like the social awkwardness of an autistic child and how some of them can be mentally slow, but... (they) don't understand people that are so low on the spectrum like Freddie, where it's hard to explain without referring to... a toddler in the fact of what they can actually do." Monica credits Freddie's constant education for the progress he's made since he was three. She recalls his intense emotional outbursts, inconsolable crying, the times when he didn't want anyone to touch him. But there was a clear turning point. Once he could communicate a few basic things, like being thirsty or needing to go to the bathroom, those behaviors disappeared. Freddie's moods settled. Looking forward, Monica would like a little more for Freddie. She knows gaining more speech would help him. She hopes Freddie's teachers will find ways to help him be less uncomfortable around people. Monica's expectations for her connection with her brother are modest. Maybe in ten years, she says, Freddie will go from letting me watch a movie with him for five minutes to letting me stay - for twenty minutes. FADING THE PROMPTS Margo is Freddie's main teacher in the Community Transition Program. The program serves young adults with intellectual disabilities and autism. The goal is to teach students skills that will help them live as independently as possible. Students join the program after high school to reinforce social and vocational skills before they enter the adult world. Margo has picked up on Freddie's playful sense of humor. She talks about how Freddie pretends to erase her white board while she's not looking. But he waits so he can get caught before he's done any damage. "I think what's least understood is that people like Freddie are capable of a lot and that they... have a personality that you need to get to know. And I think a lot of people may just kind of write people off and say 'oh, they're not going to be able to do anything.' But there is a lot that even people with significant disabilities can do and can contribute to our community." To help Freddie connect, Margo encourages him to express more of what he wants and needs. First, she has him answer basic questions. "Do you have a pet, yes or no? Do you have a sister, yes or no?" Slowly, Freddie's moving from echoing back "Yes or No?" to actually answering questions. Next, Margo will ask Freddie questions that require him to make choices. "Do you want to go ice skating or bowling?" It takes Freddie fifteen minutes to say: "Bowling." Margo knows Freddie would rather stay in class and watch a movie. She knows a class bowling trip falls well outside Freddie's comfort zone, but Margo says it's good practice. Taking public transit, crossing the street, rolling the ball when it's his turn, choosing how to spend money. And just being with classmates as they're talking and laughing, giving each other high fives at the bowling alley - Margo says they're all good for Freddie. Freddie also has a campus groundskeeping shift twice a week. He collects small debris from the ground using a pick. Then empties the debris into a bucket. Over four months of groundskeeping, Freddie's learned how to walk to the job site. He has a good sense of direction. Freddie knows whom to ask to get the work tools. And how to use the tools in his job. Still, every few minutes, Freddie loses focus. He picks lint from his clothes and watches the particles float in the air. An aide steps in to prompt Freddie: "Freddie, let's get back to work." He registers the prompt and starts back up again with the pick. Three minutes later, he stops again. To Margo, there's a very clear purpose to Freddie's job. In learning how to do a task he's been assigned, then taking steps to complete that task, she says Freddie's making significant progress. "...our goals are small, and it's baby steps, so little by little we'll have the amount of prompting decrease. But with Freddie, there will most likely always be prompting. And that's okay. I still see that as being successful. But we do want him to learn that responsibility of staying on task and completing a task. By the end of this school year, I would hope that Freddie will continue progressing in that job - and he'll get the tools and initiate working and ultimately we will have him work with as few prompts as possible." By the end of Freddie's first year, Margo envisions fading the prompts from every three minutes to, say, every five minutes. Margo says these tasks and activities are designed to find out what Freddie likes to do. By observing him in different settings, Margo hopes to learn what mix of elements would provide a meaningful day for Freddie. Then, when Freddie ages out of school services in a couple of years, Margo will help the Topetes find a day program that's a comfortable match for him. Margo acknowledges that Freddie will need a lot of support. But despite that, his teacher has high hopes for his transition into adulthood. "I would love to see him actively participating in a community program or in the community in some aspect, whether it's recreational activities or if it's working. Because he does have a love for musicals and theatre, I can see him working some kind of job at The Music Circus or...just participating in some way...Just to know that he's doing something that is making him happy and also contributing to other people, because he does have a lot to offer and he is so fun."