Audio Script for “Relish is for More than Hot Dogs: A Student’s Guide to Making Your Own Sweet Success”

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Student Guide CD/Audiotape 3 (Tape3)
November 2004
Written, produced, and narrated by Alyne Ellis
Approx. 25 pages when printed.

This document is the script of the audio program that accompanies NICHCY’s publication Relish is for More than Hot Dogs: A Student’s Guide to Making Your Own Sweet Success. On the audio program, young people, each of whom happens to have a disability, share their real life stories about what it takes to “relish” or really enjoy life. Parents, educators, and other professionals also share their insights. Supporting materials include:

While listening to the audio program is not essential for students interested in learning how these young people go for the gusto in life, it’s a fun program, both informational and motivational.

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Script

Track 1: Intro

Track 2: Neal helps out

Track 3: Computer Dave

Track 4: Chattin’ up a storm

Track 5: Autism and artistry

Track 6: Painting perspective

Track 7: Mario’s musing

Track 8: Tillman and teachers

Track 9: The doctor’s advice

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(TRACK 1:Intro)
[Music plays in the background]

DAVE: Well, lots of people know me as the computer expert. I know lots of things about computers that the teachers don’t and I know how to do it.

JACKIE: I’m here. I’m me. Deal with it. I’m not everybody else.

MARIO: I had to realize that I was different. What do I have to offer? I’ve practiced at setting little goals to keep my self-esteem up.

JACKIE: I remember when my class was running the mile in P.E., I would lift weights. Lifting those weights made me feel better about myself, not only physically but mentally, because I knew I was doing something. I wasn’t just sitting there like a lump on the log.

AARON: I just believe in myself and just keep going and that’s how I manage to do it. So I take that creative part of me—whether it be singing or dancing or acting or art—and I do the best I can with it. And I hope that it will carry on to big and brighter places.

NARRATOR: These are the voices of kids and adults who clearly feel good about themselves. Filled with self-esteem and self-confidence, all these people have fashioned a rock solid place in their hearts. A place where there’s no swaying with self-doubt and sad introspection. Instead, each of these people—and the others you’ll meet on this tape—have direction, and hobbies, and projects. And each person also has a disability. These are their stories about how they got to where they are now—full of ambition and promise and good feelings about what they can do and who they are. I’m your narrator, Alyne Ellis. Let’s start by going with Neal to his karate class. It’s afternoon and the kids are filing in to warm up.
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(TRACK 2: Neal Helps Out)
[General ambiance of people entering]

ALYNE: Welcome to the Black Belt Academy. In the lobby, there’s a big sign that says “The power to win must come from within.”

How ya doin, sir?

I’m good.

Good seeing you, young man.

ALYNE: It’s class time and at least thirty kids are lined up in front of giant mirrors, moving with great precision, and a lot of enthusiasm.

Quiet!

ALYNE: The class is watched over by a robust looking guy with a fifth-degree black belt and a fatherly, no-nonsense demeanor. He’s Tracy Thomas, the school owner. And right now, he’s got his eye on the smallest member of the class, Neal Perguson. A happy-go-lucky, tiny ten-year-old who bounces around with a lot of gusto, enthusiasm, and energy.

TRACY THOMAS: Neal’s gonna be going to Little Rock, Arkansas this year. You guys heard about that? Yeah, so we’re really, we’re really excited about that.

ALYNE: Neal has Down syndrome. He’s been taking karate for years. Now he helps out with the class several times a week.

TRACY: His job is to go around and correct the positions of the other students. Cause Neal can look at the class right now and see, actually, where they’re supposed to be.

ALYNE: Neal watches the class intently, moving down the rows as other kids bend and pose. Satisfied, he takes his place and does a few kicks before he restlessly moves on. He keeps glancing at the microphone, just a few feet away, eager to demonstrate what he can do.

TRACY: Get your board. Let’s go over here. Neal, you can do this buddy. Hit hard. Yell loud. Very good.

ALYNE: Neal has worked his way through several levels of karate and will be competing in Special Olympics in Arkansas next week. Tracy Thomas says Neal has learned to be more flexible in his moves. Now sometimes you see the fluid movements of Jackie Chan. Sometimes.

TRACY: Neal was a definite challenge when I first started teaching him. When Neal puts his feet in the ground, he locks them in tight. So, he’s come a long way since then.

GAIL BRASWELL: Neal has Down syndrome, also known as Trisomy 21. He was diagnosed at birth. I did not know that I had a baby with Down syndrome when he was born.

ALYNE: Neal’s mom, Gail Braswell.

GAIL: When he started out in karate, he couldn’t jump. At all. Now he’s demonstrated running jump sidekicks.

ALYNE: Gail picked karate for her son because it offers a system where everyone works at their own pace and gets rewarded when they achieve. He’s also a cub scout.

GAIL: The structure of it is designed so that each child that does a good job gets rewarded for doing a good job at their level, whatever that is.

ALYNE: Like any kid who likes to get stuff by earning it, Neal has taken to both karate and scouts. He’s just finished a recycling project and has a new community badge. Gail made sure Neal’s projects tied in with his civics lessons in school. That way Neal was doing homework even when he was having fun. He’s also perfected his fine motor skills, and he can now tie his shoes. For that, the Cub Scouts rewarded him with a silver star.

NEAL: I get a star, star, star, star—big boy.

ALYNE: Dressed in a spanking clean uniform, Neal points to his bear patch.

NEAL: Bear patch.

ALYNE: You got a bear patch?

NEAL: I did a good job.

ALYNE: Is this your bear patch?

NEAL: Yeah.

ALYNE: When did you get that?

NEAL: I got it at boy scouts.

ALYNE: Talking spontaneously and clearly is so very hard for this bubbly blond boy, so his mom makes sure she’s got pencil and paper ready.

GAIL: I am writing some things about Neal that he can read to you.

ALYNE: When he reads, Neal can focus his speech.

NEAL: I am 10 years old. I am black belt in karate. I am going to world championships next week.

GAIL: He just feels good about himself because he does a lot of the stuff he likes to do. And just the recognition, to him, is important. At the end of class, in karate, they recognize the kids that did their homework by asking them to come up to get their stars. And he loves that and that just to him is just incredibly wonderful.

ALYNE: With a couple of fun activities a week, Neal has a busy time of it after school. He gets a chance to explore the wider world throughout all those many Cub Scout badges and karate trips.

GAIL: I’ve always felt as if he could do a lot. It’s my job to find out how much.

ALYNE: “All good students in karate get to go and stay in a motel,” Neal says, smiling. “I’ll go to the tournament, I’ll see all those people, all the new black belts will get to go.”

NEAL: All good students in karate and all new black belts are going to the tournament.

ALYNE: “I wear a karate uniform,” Neal adds, “and I’m ten.”

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(TRACK 3: Computer Dave)

DAVE: This is my website. You can hear the tunes as it comes up.

ALYNE: It’s evening at Dave’s house. We’re in his small bedroom, looking at his computer. Yet, ever the thoughtful host, Dave has a solution for the growling stomach I’ve brought along with my microphone.

DAVE: How about a Super Value Combo Number 1. Cheeseburger, fries, and a coke.

ALYNE: Well, thanks a lot, Dave. I think. As a big picture of food starts to fill the computer screen and the e-mail site for Dave’s McJupiter pops up. He just smiles. I must say, I’m not too surprised when he clicks over to the letters section of his website—jupiterduo.com—and says . . .

DAVE: Sometimes people write in to me with problems of all kinds, you know, love problems, school problems, and when I don’t get enough submissions, I make up my own.

ALYNE: For example.

DAVE: A commercial airline flight leaves Norfolk International Airport heading for Virginia Beach at 150 miles an hour at 2:00 PM. A train leaves London heading for New York at 100 kilometers an hour at 2:30 PM. At what time will they meet? I can’t see any reason for an airline flight to be going from Norfolk to Virginia Beach and a train going from London to New York, that would just be stupid unless there’s a bridge across the Atlantic that I haven’t heard about. Maybe it’s a trick question.

ALYNE: So this is the place where you get to try to be funny, isn’t it? I mean really …

DAVE: Yeah, definitely. Funny in my own sort of way.

ALYNE: At 15, Dave has been playing with computers for years. When the Internet was born, he took to it like a mouse to a pad.

DAVE: I know more about computers than, I bet, 99% of the people I meet. And that’s one thing, I think, that’s a gift to me. And I think it’s really great that I can do that.

ALYNE: Dave’s mom is proud, too. She says he’s a mean typist and a quick chatter on the line.

DAVE’S MOM: I’ve seen him line them up, four on a screen. He can converse with them in a way that I think he has difficulty with in real life. But over the computer, the non-verbal stuff, you don’t have to worry about that.

ALYNE: At school, where Dave is in the 10th grade, he has trouble sometimes connecting with people. That’s because he has Asperger’s syndrome and Tourette’s syndrome.

DAVE: I can pretty much, you know, read people’s facial signals and everything. I can tell what they’re thinking, but still I have a hard time making and keeping friends.

ALYNE: He gets help at the beginning of every year from a student community trainer.

DAVE: That helps me with social skills, goes to classes with me at the beginning of the year, just to make sure everything goes okay. And then she fades out of them.

ALYNE: Dave does have a small, good circle of friends and to hear him talk now, everything is fine. And it is.

DAVE: I don’t feel like I’m different because I have Asperger’s or because I have Tourette’s. Most people don’t even know that I’m special ed.

ALYNE: But, where did he get all of that self-assurance? Computers helped a lot, but first you have to hear the beginning of his story.

DAVE’S MOM: When he went to middle school, things really got bad, as they often do for kids with Asperger Syndrome. He was in three different middle schools and on homebound placement—all in one year’s time.

ALYNE: Being told you weren’t wanted when you acted out with severe behavior problems was awful. So one day, Dave’s mom, with nothing much to do while he was on homebound placement, took 12-year-old Dave for a drive.

DAVE’S MOM: We rode by his elementary school one day. I said, “Things were so different back then. Didn’t you feel safer there?” He said, “Yes I did.” And I said, “That’s a real shame that you can’t feel safe in a place, in a school. Emotionally safe.” And I said, “Maybe we can get you in there to do something. To do some kind of volunteering. Would you like that?” He said, “Yeah, I’d like that a lot.” So my husband talked to the principal and she said, “Yes, we’re going to do this and I don’t care if it’s technically not allowed, that we’ll make it work.” And my husband talked to her about computers would be a great place for David and he went several times a week back then. It’s been a wonderful win-win situation.

ALYNE: Dave helped the kids with CD-ROMs and Internet research, and he helped the teachers when they got stuck with computer problems. All of a sudden, he was plugged in again. Plugged in to a way to reach people and by teaching the skills that he knew so well, he began to transition back from anger and isolation to the world of making friends, reading people’s signals better and to reaching out. Dave remembers it fondly.

DAVE: And I know lots of the kids at the school now, too, cause I’ve been doing this for three years, volunteering with them in the computer lab.

DAVE’S MOM: We didn’t know at the time what a good thing we were doing because that year that helped rebuild his shattered self-esteem. I think when you’re a 12-year-old and school after school has told you, basically, we don’t want you. We’re gonna do something else. You need a different kind of help. That to find something where people are really seeking you out, and saying, hey, you know, you’re really helping us. I think that helped. That was the start to rebuilding David’s self-esteem. And now I think it’s pretty good, but it wasn’t three years ago.

ALYNE: Dave is like any teen. Hoping for stuff to feed his ever-growing interest. His website has a birthday list that converts to a Christmas list when his birthday is over. And you can be sure all his relatives log in.

DAVE: And on my list I have various things, such as an additional phone line and, uh, digital camera memory reader and Quake. And by each item I have a link to a store where you can buy it online, so it’s easy to shop for me.

ALYNE: It won’t be too long before Dave can shop for these expensive things himself. He signed up for AP computer classes and has already designed websites for his teachers and the swim club.

DAVE: Even I’m thinking about designing websites for business people in the area. I can hopefully build a portfolio of websites I’ve designed and use that to help me get wherever I want to go.

ALYNE: Dave is active offline at school too and in his community where he’s become a public speaker for others with disabilities.

DAVE’S MOM: I knew he could do it cause he likes to do public speaking. He could be the voice for students who couldn’t speak. Things like that and when you can have positive experiences, when you can know that you make a difference. That it just helps build yourself a ladder of self-esteem. If there is a setback, you’re so high on the ladder that if you get knocked down a step or two, you don’t get knocked down all the way. You’ve got a safety net. You can just, you know, one step back, two steps forward. And you just remember all the successes you’ve had and you can overcome any slight difficulty. Cause he fell fast and far three years ago, but now we’ve built these successes and he’s done some wonderful things that if anything were to happen, you know, a little minor upset or something, he’s got all these successes and he’s not gonna get knocked off that ladder again.

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(TRACK 4: Chattin’ Up a Storm)

JACKIE: Me and Holly here met in 7th grade. We met on the school bus the first day of school.

HOLLY: We also had homeroom together.

JACKIE: Yeah.

ALYNE: Right now Jackie and Holly are holed up in Jackie’s large room, sitting with their wheelchairs close together, surrounded by books, a couple of stuffed animals, and rock CDs. They laugh and chat with the ease of old friends.

JACKIE: The first thing I say to her is how’s life, how’s the family?

HOLLY: It’s cool to have someone to talk with.

ALYNE: For the past five years, Jackie and Holly have been talking a lot. These 16-year-olds go to the same high school. Now in the 11th grade, with very different emerging interests, they don’t even take classes together.

HOLLY: But right now we don’t even have one together. That really stinks! (laughs)

ALYNE: Small and a lot more frail than her friend, Holly is taking fashion design and likes little kids.

HOLLY: I would one day like to be a kindergarten teacher. The child development class might help.

JACKIE: ROTC and debate.

ALYNE: You’re taking ROTC?

JACKIE: Well, first of all, they’ve been very good at adapting it. And second of all, I’ve always been interested in the army. In fact, if I could, if they would ever pass a law that said disabled people could be in the army, I’d be the first one to sign up. I’d really, realistically like to own a PhD in theology and teach college kids.

ALYNE: Both kids have had to deal with a lot. Jackie has cerebral palsy and cannot walk. Her fine motor skills are poor. Holly has a degenerative form of muscular dystrophy.

How much does it help to have a friend like Holly here, where you guys have a lot of the same issues?

JACKIE: It helps, I mean Holly’s a great friend. You also need to focus on what works for you. Sometimes people with a friend with disabilities lean on the friend too much and start taking their friend’s experience for their own—and you can’t do that because then you start neglecting your own life.

HOLLY: Well, sometimes, you know, since we have different issues in our own lives, we deal with things differently, but some things are the same, you know.

ALYNE: And in some ways, Jackie and Holly’s lives just couldn’t be more different.

JACKIE: I am the only person with a disability in my family. I’m sort of glad. One, because I don’t want my other family members to go through the crap that I have to go through; but, they can help me.

HOLLY: I’ve had a few hardships in my life. I lost my mother in ’97, and this last year I lost my sister Tiffany, and she had the same disorder as I do.

ALYNE: Tiffany was ten. The little sister Holly made lesson plans for on the Internet. The person she printed out information for about flowers.

HOLLY: It’s really hard. We were good friends. But, thinking that she’s in a better place, you know? And she’s with my mother now.

ALYnE: So your real faith helps a lot in a loss like that?

HOLLY: Yeah. And plus my family members, my brother, I’m really close to. And my dad and all my relatives, cause I’m really close to them, too.

ALYNE: Holly’s brother sits watching as Holly chats with us. He’ll drive her home after her visit. Holly says she sometimes thinks about her sister and this helps her because Tiffany would want her to be strong.

HOLLY: She didn’t let anything get her down, usually. She had a lot more courage than I did, cause, like I say, I’m sort of a worrywart. If I’m afraid to do something I can think of her saying, like, “Holly, don’t get afraid. You got to keep on trying and you can do it.” You know, if you have people standing behind you.

ALYNE: And from the kitchen, filled with plants, and several very large aquariums, Jackie’s mom can be heard cleaning up after dinner. For Jackie, too, family has been the tent pole.

JACKIE: I think my mom has always cultivated an independent spirit in me—by not giving me negative energy, you know, negative thoughts. Words, or looks, or glances, or whatever types of communication. A mother communicates with a child, she made me feel stronger and more independent.

ALYNE: Both girls will soon be headed for college. Holly wants to go near home, and Jackie may end up all the way in California. But, not as far as you might think.

JACKIE: My mother has made a promise to me, since kindergarten. Wherever I go to college, she will follow. I don’t want to be with her, obviously. But to be around her would be nice, so if I need anything or, you know, that sort of thing.

ALYNE: Wow, that’s quite a commitment from your mom.

JACKIE: She’s a great mom and she’s always been there sort of, like, whenever I needed something.

ALYNE: Meanwhile, before they’ll have to wait a whole semester to get together, Holly and Jackie are busy just doing what we all do—having fun.

JACKIE: Yeah, we’ve seen a couple movies together. I mean …

HOLLY: We go to the mall together, we hang out, even over the summer, too sometimes. Whenever we can, like birthdays.

ALYNE: As I out of walk out of the door and down the hall, I can suddenly hear these serious teens break into laughter. My mic’s off and they can feel free to really chat. Darn, I think; I feel kind of left out. Well, that’s the way it is.

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(TRACK 5: Autism and Artistry)

MATT: Hello. I may be young for my age, but here I am and I’m going to play the piano today. (applause) The first song is a piece by Horace Silver. The title is Song For My Father. It’s also from our CD, One is Not Fun, but 20 is Plenty.

ALYNE: Matt’s been called another Mozart—by Dave Brubeck, no less. And playtime for this 9-year-old is the stage of the Montreal Jazz Festival. (piano)

MATT: I’m pretty good at it. (laughs) Although, I shouldn’t boast too much.

ALYNE: Matt doesn’t boast too much, but at nine, he sure could. He’s a student at the New England Conservatory of Music and he’s already made three CDs. Friendly and intense when he talks about his new-found musical passion, he’s only been playing jazz for two years. Matt’s just wrapped up in the music.

MATT: Dominant 7 sharp 9 (laughs). I love that chord. Umm, if you do it, removing one note and inverting it, you get (singing) doo doo doo! It sounds very interesting and different. I started hearing jazz with the Kind of Blue CD and it got me into jazz. It got me into the groooooooooove. (Miles Davis plays in the background.)

ALYNE: And when he sits down at the piano, at home in Massachusetts, the melodies and intricate patterns just flow from his fingers, even though he can’t yet reach an entire octave on the keyboard. (piano)

Dr. Carol Englander has seen Matt as a patient for almost seven years.

DR. ENGLANDER: When I first saw him, he didn’t initiate conversation. He would say something in response to something, but usually it was his mom saying, “Say hello to Dr. Englander” and he would say, “Hello, Dr. Englander.” And his mom would say, “Why don’t you tell Dr. Englander about this?” And then he would; he would say whatever it was he was going to say, but he didn’t start a conversation much on his own.

ALYNE: That’s because Matt Savage has autism, hyperactivity, and hyperlexia—a fixation with words and numbers. Sitting down to chat is still a challenge. Take this exchange about Duke Ellington’s, Take the A-Train.

MATT: I’m thinking of an express train! (Matt begins making noises)

ALYNE: But soon he’s back, focused and ready to chat some more.

MATT: Jazz grabs me the most because it’s upbeat and you get grabbed into the song. Like when you come to the super fast tune and then it seems to grab you into it and then you start dancing and then you come to a ballad (snores) but then it goes to a super fast again! (laughs)

ALYNE: Kicked out of day care after just two days, reading by 18 months, Matt’s complex. He used to throw giant temper tantrums when he heard sounds—any sounds. Car windshield wipers, vacuums, his sister crying, just anything. Being touched and having his diaper changed set him off, too. But, so did not being held constantly. Matt’s mom, Diane Savage.

DIANE: The diagnosis was actually PDD, which is pervasive developmental disorder, with hyperlexia, and hyperlexia is a fixation, an obsession, with letters and numbers. And hyperlexic kids read very early—which Matthew did. And they said it was possibly Asperger’s.

ALYNE: Making eye contact from Matt was almost impossible, and asking for what he wanted, well, Matt would just toss things around instead, and then he’d get mad.

DIANE: He would all of a sudden throw a tantrum because nobody got him juice. But he had never asked. We would make him ask. We … and that is really hard to do, for a parent. You know, I knew exactly what he wanted. I knew he wanted a drink of juice.

ALYNE: Diane Savage says she worked with Matt every waking moment. Her husband changed jobs so he could spend a lot more time with her other child, their newborn daughter. But then, school began.

DIANE: I think the worst time he had was in first grade. And I think that he wanted so much to know everything and do everything and be part of the first grade class and he was so anxious and so, um … he couldn’t cope. He had a very tough year in first grade. His anxieties were keeping him from reaching his full potential. And when we started him on medication, to help with his anxiety, then he would all of sudden, he became calmer and then was able to open himself up even more to the world.

ALYNE: After a lot of counseling and two courses in sensory integration to sensitize him to the ordinary sounds of the world, Matt suddenly discovered music. Literally sitting at the piano and leapfrogging through a scale and playing pieces really well in just a matter of weeks. (piano)

JOHN FUNKHOUSER: I don’t know if I’ve actually ever played with somebody who was growing as quickly as Matt is. In fact, even if it’s only been two weeks, where there’s a quantum leap between the way he was playing the last time and the way he is the present time.

ALYNE: That’s bassist John Funkhouser, one of the members of the Matt Savage Trio. Old enough to be this bubbling kid’s dad, he teaches at Berklee and finds himself energized by Matt’s willingness to experiment with music on stage and off. He remembers when he and drummer Steve Silverstein first played with Matt. It was exhausting.

JOHN: The first couple of concerts we did, every tune was incredibly fast, basically as fast as all of us could play. (laughs) And one tune after another after another, just, you know, super fast and Steve and I (the drummer, Steve) and I were sweating by the end of the second tune, not to mention by the end of the set.

ALYNE: Funkhouser says each time they play, he can see their leader listening more for cues and also going with the flow, if they go astray, while improvising. Music has given Matt a way to reach out and connect.

MATT: When it’s time to give a solo to John, and if John doesn’t notice, I might call a soft, “John, John.” (music)

MATT: It is sort of like a conversation. We’re cooperating, pretty much.

ALYNE: Matt’s started writing his own music now and to hear him talk about the reasons behind one particular song is to hear a child who has connected with people.

MATT: Rebecca’s Waltz? Well, I named it for my sister, Rebecca. She’s a very beautiful kid. She likes to play, she’s a cute little kid. (music)

ALYNE: And the subtle nuances of language? No problem.

MATT: I put my heart into the music. I felt like it’s time to play beautiful, like spending some time with your lover on a romantic night.

ALYNE: Underneath it all, though, this thoughtful kid in sneakers is a kid who’s aware that his trio has the power to please an audience and judges. He’s even a little competitive.

MATT: The Matt Savage Trio is ready to beat the evil villain trio! (laughs) (music)

ALYNE: Dr. Carol Englander.

DR. ENGLANDER: It literally brings tears to my eyes to think about who he was when he was four and a half and who he is now and how far he’s come. And if he’s come this far in this short a time, I’m really sure he’s going to continue to progress and, you know, keep on moving down, and I’m really looking forward to seeing where he is, you know, when he’s 15 or 16. I mean it’s going to be really very exciting and he’s just a super kid. (music)

MATT: I can play on and on and on and on and on and on until the audience starts to take a snooze. And then the judges come in and rate them and then they all hold signs up of “10.” Actually, I said “negative” with my lips, so you couldn’t hear it! (laughs) (music)

ALYNE: Well, we sure thought Matt’s music was a plus 10. So we asked him if we could use it throughout this tape. We’re glad he said yes. (music)

MATT: You know what we also have? An encore! One, two, one two three four.

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(TRACK 6: Painting Perspective)

AARON: I’m Aaron Wristen, I’m now a really good artist.

ALYNE: He is good. At 17, Aaron is a busy guy. The walls of his small studio are filled with unbelievably vivid, imaginative, huge canvasses.

AARON: Well, what I do in art is basically through design and rhythms and patterns and color. Here’s Lady of the Lotus, India. There’s the Taj Mahal within a pearl and some Indian women inside a pearl. And it’s like a reflection of what India is and the people of India.

ALYNE: A rich purple background frames Lady of the Lotus’ direct gaze. Look hard, and you’ll see a colorful bowl—a flower on her ear. Her necklace, a rainbow.

AARON: This piece over here is a new series, entitled African Visions of the Homeland. I felt more connected with the subject matter because it was more of who I am. For there is African in me. Though I’ve never been to Africa and I was adopted to white parents, this came from my own spirit. It was as though the ancestors of mine were speaking through me and coming out on paper.

ALYNE: And not just his own ancestors. Japan’s Empress of the Moon celebrates the mystery of the cherry blossom, the pagoda and the bamboo. Ireland’s maid seems to waft in on a rain of shamrocks led by a bird. Aaron’s art communicates a respect of foreign lands and the vibrancy of living in one’s own culture. And these images often give away his own thoughts. For long ago, when he was young, Aaron retreated from the world. Aaron’s mom says when she got him, at a-year-old, as an infant—even then, there were signs of trouble.

AARON’S MOM: I strongly suspect in his first year of life was abused—very fearful, very timid. A extreme unwillingness to take risk. Learning to read, learning to do math. Voluntarily mute in many environments.

ALYNE: Aaron’s mom said he did talk some. Aaron describes himself as not talking until he was at least 11. But all the while, as he viewed the world behind a silent wall of suspicion and fear, Aaron had his pencils, crayons, paints and canvasses.

AARON: My art, it was a way I could actually talk, and I think that’s what I still do today—although I do talk. But a lot of this art I’m doing today is a lot of the feelings and things that I’ve had through my own life.

ALYNE: But even with an outlet, everything most of us take for granted was just awful.

AARON: I remember when I was, like, taught to read, I threw up on the lady that was trying to teach me. Because I was so depressed, I was so afraid of it.

ALYNE: Aaron’s mom taught him to read herself, at night, away from school. But she couldn’t be there during the day. Soon all these differences became apparent to his classmates, and his lack of congeniality with his peers, coupled with his extreme sensitivity to emotions. These emotions made Aaron vulnerable.

AARON: I would go home in tears some nights. I mean, how it was going.

AARON’S MOM: He was a targeted youth. Name calling, the difficulty of going to school and facing the daily harangues from peers in the hallway was so much that Aaron began to hallucinate.

AARON: I was afraid of people, um, I was afraid of objects and things—and afraid of learning new things.

ALYNE: Eventually, Aaron’s mom took him out of the public school for a time. He went to St. Vincent’s, a school for emotionally troubled youth. To this day, Aaron does not think of it as a place for children with mental problems, but he does remember it as controlled. A place he was very glad to leave when he once again was able to return to the public school several months later. At St. Vincent’s, Aaron had learned ways to keep himself in check. The jeers didn’t stop completely—when he got back to high school, he was ready to deal with them.

AARON: Usually I try to find ways of thinking I’m better off than that. I need to walk away from that situation. Just take a breather and realize some of the positive things that I do in my life. You know, art and creativeness is what I enjoy.

ALYNE: Aaron is an artist in more ways than one. He sings in the school choir, and he writes music, and he sings in church.

AARON: (singing) The Lord is like a sparrow. The Lord is like a stream. He runs through a meadow, and he blooms from a seed …

ALYNE: So it’s not surprising that when he begins to describe his paintings, musical analogies come up. Standing in front of a gorgeous painting from his Africa series, he proudly sweeps his hand in the air. He almost strokes the swirling lines of color that merge and fugue like entrances and staccatos of vibrant blues and greens and oranges.

AARON: It has such a rhythm, such a flow. For instance, the lion’s head—it looks like a giraffe is emerging from part of its face. How the horse’s mane becomes a river, with flows of fish. Whales emerge. Fish emerge in the circle of life. It’s like music through pictures. And if you would just listen carefully, you can almost hear it.

ALYNE: As time has gone on, others have noticed Aaron’s talent.

AARON: As I went on, I matured in this art. I kept going. My essence was building up. I was getting more energized.

ALYNE: Everything began to change for the better.

AARON: I saw something happen. It’s as though the rug flipped over, I mean, to its normal side. I saw everything change, everything became more open and alive to me.

ALYNE: Now, Aaron has been offered work.

AARON: I’m working right now on a mural at the Afrocentric School downtown. They don’t have a lot of money and I’m doing this project for, pretty much, a good price—not for money, basically, but for a purpose.

ALYNE: At 17, Aaron Wristen is using the language of an architect. A professional who knows what he can do for others with his art.

AARON: This is a way for them to be connected more with this building. To have some way of saying “This is our building. This is for our future children.”

ALYNE: Confident? Excited? Wait a minute. Is this the same person who couldn’t read and is so fearful? Aaron’s mom sadly says, “Yes.”

AARON’S MOM: If we took the same young man and say, you know, Aaron we’re now going to go to the bank and get change for a 20 dollar bill, you would see a different person. Very timid, reluctant to get in line, and reluctant to wait and not know what to say. You know, not wanting to go in by himself, wanting me to stand by him. That kind of thing.

ALYNE: Aaron doesn’t drive and his mom is not pushing him to. She says he would just get too freaked out if he made a wrong turn and had to renegotiate his way even around a block. But with lots of special ed help, he’s learned to take the bus. Aaron doesn’t shy away from doing further research. When he began painting his picture Princess of the Promised Land, he wanted to incorporate Hebrew into the landscape—and that forced him to go to a synagogue to chat with a rabbi, so he could bone up on what he needed to know.

AARON: Here we see the Ten Commandments and Hebrew, the Torah, and all the different symbolisms that make up the Jewish culture. From each of the flames to each of the trees, I made six for all the six million Jews that had perished and died in the Holocaust, so that was really touching for me.

ALYNE: Princess of the Promised Land joins her fellow women in Aaron Wristen’s lovely calendar of women of the world. There’s January’s Princess of Freedom, February’s (The Queen of Hearts) China. The Princess of the Harvest Moon, a lovely Native American woman sits amidst baskets and pumpkins and religious symbols.

AARON: Through this calendar I’m able to show others that our world is so large and so big and there’s so many different types of people. It doesn’t matter the color of our skin. There’s always something beautiful in every one of us. People, when they saw this, they were so struck by it—and I was too. I didn’t really realize I had it in me. I feel so good about myself.

ALYNE: Aaron sells t-shirts of his art and now he’s constructing a website to show off his work. He’s also displayed several pieces in galleries and he’s in contact with agents in New York City. He won’t say who, good businessman that he is. And for others who’ve walked the lonely road he has, a road he describes as being out of your shell and trying to get back in, he has this advice.

AARON: Try to push yourself to do other things to help you get out in the world and doing things that you like doing. And if you want to do that thing that you most feel passionate about, don’t be afraid of it. You must do it, because if you don’t, you’ll never get there. You’ll never go up the next step. And I believe that if you go up the next step, there’s a gazillion other steps you can go up.

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(TRACK 7: Mario’s Musings)

ALYNE: At 29, Mario gets what young kids don’t get—the luxury of looking back and seeing how you got where you are. And he likes what he sees. A good-looking man with a disability rights t-shirt, a tennis shoe collection that might rival Michael Jordan’s, a job, an apartment where his friends can hang out, and most of all, pride.

MARIO: People, when they talk to me, you either want to listen or you don’t. And I know when you don’t want to listen and I take advantage of it. (laughs)

ALYNE: Basically, that means you better listen up, or try to. Or you may be the brunt of Mario’s ferocious humor. Sometimes he says he’ll just babble along if he thinks you’re not making an effort to decipher his speech.

MARIO: People, they patronize me a lot and that really irritates me. For example, if I say, “Hey, how ya doin?” and you say, you know, you say “4:00,” that tells me that you have no idea what I just said. Or something’s not right in your head.

ALYNE: Okay, let me help you a little until you get used to what Mario is saying. He says he does that, too. He’s more than willing to repeat himself for as many times as it takes when people try to understand his words. He’s just said, “People, they patronize me a lot and that really irritates me. For example, if I say, ‘Hey, how ya doin?’ and you say, you know, you say ‘4:00,’ that tells me you have no idea what I just said. Or something’s not right in your head.” Now, try again please.

MARIO: People, they patronize me a lot and that really irritates me. For example, if I say, “Hey, how ya doin?” and you say, you know, you say “4:00,” that tells me that you have no idea what I just said. Or something’s not right in your head.

So, I say different stuff, just to see are you really listening. I can tell.

ALYNE: Mario has CP, cerebral palsy.

MARIO: It’s just really, that every day is a challenge. It keeps me going. You know, I’m just like anybody else, I have good days and I have bad days. But it’s just a challenge, um. I wouldn’t trade it. I wouldn’t trade it for the world.

ALYNE: But before he could get to this point of view, Mario had many bad days. Particularly when he was young. The kind of bad days kids have—especially kids with disabilities. School days when your peers stare at you and tease you and don’t let you forget you are different.

MARIO: You know, one day I went home and I cried in my room. And my mother came in my room, and she said, “Why are you crying?” I said, “I don’t understand. How come I can’t go to the school for one day and not get teased and not get harassed?” And she said, “The reason why is because you don’t like yourself.” She said, “There’s no way anybody will like you until you like yourself.”

ALYNE: Slowly, Mario began to change. Encouraged by his mom, who knew he was struggling to say his name over and over so people knew what it was, he began the slow process of teaching himself to talk properly. And there were other lessons to learn. When he was about 9, Mario’s mom did something Mario just never expected.

MARIO: She said, “Mario, you’re gonna have a brother.” I said, “Why?” She said, “Because I want another child.” I said, “Why? You have me, what more do you want?” She said, “Well, I want another child.” She said, “and therefore, you are going to have to learn how to be independent and we’re going to start today.”

ALYNE: Then, Mario’s mom left him alone.

MARIO: She said, “I’m going to run an errand, I’ll be right back.” I said, “Well, well, I’m hungry.” She said, “So what?” She said, “I brought you a snack, go eat that snack. When I get back, I’ll cook you, you know, breakfast.”

ALYNE: On the kitchen counter, Mario’s mom left a Little Debbie snack cake. For a kid who couldn’t use his hands well, it was a formidable challenge.

MARIO: Now this snack cake was already wrapped in the package. But I couldn’t open it. I didn’t try and open it, because I knew I couldn’t open it.

ALYNE: Time passed, and Mario wanted food. After all, it was Saturday morning, and in between all those Bugs Bunny and Beep-Beep the Roadrunner cartoons, there was lots of candy and cereal commercials. Still, Mario didn’t move.

MARIO: I’m going to go to the computer, and when she gets back, she’ll feel bad. She’ll feel guilty, she’ll start crying and I’ll feel real good cause I made her cry.

ALYNE: But then, he rolled into the kitchen and got to work.

MARIO: Now it took an hour and a half to get one snack cake open. But I opened it. And that was the first lesson that taught me whatever I want to do in life, I can do it, as long as I believe it. You know, I was hungry.

ALYNE: Opening that Little Debbie snack cake made a big difference to Mario.

MARIO: Once you get to know how you do what you do, that opened up a lot of opportunities.

ALYNE: Success builds success. Over time, as he felt better about himself, and liked himself more, all kinds of things started to happen.

MARIO: I would get a lot of positive attention. I got a lot of friends. I went from being a nobody in school to the most popular person in the school. Girlfriends. I went from getting okay grades to good grades.

ALYNE: Mario had tapped into something we all wonder about and even envy sometimes. Don’t you just get jealous when someone just seems happy when you aren’t? When someone seems to be centered when you feel you’re off track? Well, magnify that with the mystery of how someone who sounds so disabled gets along so very well and Mario found his calling—a unique ability to help others. He’s empathetic and he understands adversity and how to tackle it head on. By 14 or 15, he was listening and helping others with their problems. And all the while, bolstering his own image of himself.

MARIO: I built my whole life around building others up. And when they’re down, I know what to say and know what to do to build them back up. I like to laugh. I like to joke. But also, joking and laughing you can still learn at the same time.

ALYNE: There will always be things Mario cannot do. He cannot ride a bike, for example, although he does drive a car. And he’ll always need an aide to help him get dressed.

MARIO: A person with high self-esteem will admit that they can’t do something and they get help in doing it, or just move on and perfect something else. You know, that is what a person with good self-esteem would do. A person with bad self-esteem or low self-esteem will keep doing and keep doing it, and get discouraged and then give up.

ALYNE: Mario has a college degree and now works full time as a youth counselor and a public speaker. He gives talks regularly to doctors and school groups. As a counselor, he has helped one young man get a driver’s license when the driver’s ed teacher thought he was too disabled to pass the test. Mario says he’s always setting goals. He wants to be on TV so he can change the way others view people with disabilities. Mario says he hopes to marry and have kids, before he gets too old.

MARIO: This disability, it couldn’t master me. I had to master it.

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(TRACK 8: Tillman and Teachers)

VOICE: Alright, hand it over …. Rrrrrr. (dog barks)

2nd VOICE: Bye sweetie, see you tonight.

VOICE: Bye.

ALYNE: Some stories about self-esteem struggles are just too hard to hear.

TILLMAN: My mom, since she works—well, you, since you work in, you know, NPR and radio, you’re kind of used to people doing exactly the way you want to and you’re not as patient with me cause you’re supposed to be snap, snap, snap getting pieces on the air all the time.

ALYNE: This is my son, Tillman. It’s time to hear his story. But first I have to say that I have a whole new understanding and appreciation for the parents who agreed to let their stories be told, their children interviewed, their privacy so openly shared. My son, Tillman, is 13. Tall and lanky, I see the budding signs of adulthood on the way. Here’s how he describes his disability.

TILLMAN: I just don’t see the whole picture of what I’m learning. I just see parts of it instead of the whole idea of what I’m supposed to get. If you can’t get all the information together, it’s hard to put it together in, like, a puzzle cause you don’t know which parts of history you learned together and you might remember maybe a date from one other time and put it with a whole other time. You just kind of get confused.

ALYNE: Tillman has ADHD, information retrieval problems, and trouble writing. By first grade it was clear that reading was more than a stretch. Tillman still remembers choosing a picture book with three letter words to take to class. He knew it was supposed to be easy.

TILLMAN: Old Hat, New Hat. I couldn’t read it and I was only getting a few words like hat and I just remember standing up, the teacher asked me to read it out in front of everybody. I couldn’t do it.

ALYNE: And Tillman wanted to do it. He was so frustrated and so were we.

BOB: I just wanted to say that I love Tillman dearly, and he’s been a challenge.

ALYNE: This is my husband, Bob. For him, Tillman’s issues are all too familiar.

BOB: When I was growing up, I had all the issues that Tillman has. But I didn’t realize it or know it. And when I seen Tillman going through all the different trials and tribulations that he has over the past years, I really can see myself.

ALYNE: Like Tillman, Bob has ADHD and possibly dyslexia. Growing up in South Carolina in the fifties, undiagnosed and misunderstood, Bob felt confused and sad. The teachers passed him from grade to grade. We now live in Washington, DC, an area that has at least five or six private special education schools.

BOB: And I think that, um, he has so many more advantages than I did when I was in school.

ALYNE: Watching Tillman struggle, we moved him to the McLean School of Maryland, a private school with many students who receive special extra help.

CAROLYN: We deal with students with average to above average intelligence with minimal learning differences and run a program based on a continuum. There are different levels for different classes in terms of accommodation.

ALYNE: Meet Carolyn McNichol, the principal of McLean’s Middle School. She remembers Tillman’s bright, low achiever profile.

CAROLYN: When you look at somebody like this file, you’re feeling is he ought to be able to do it. He’s got the sort of tools in his toolbox, he ought to be able to get this. And yet, he’s not getting it.

ALYNE: At McLean, our child seemed to be entering a place that had the resources to offer him a chance.

CAROLYN: We have lots of what I like to refer to as wounded ducks, who had very negative school experiences who come here and find this to be a very welcoming place. Children who have in other places been really understood as belligerent, and sort of behavioral issues. At McLean, I think we have a much better understanding that there’s usually a reason for it.

ALYNE: Tillman lashed out at people. Sometimes he could be mouthy. His work wasn’t getting done because he was moving around, distracting others with inappropriate humor.

BOB: A long time ago, when one of the teachers or principals would come up to me, I always flinched because I was thinking it was something that Tillman had done.

ALYNE: Talk about when he got in trouble at McLean.

BOB: (laughing) Which one?

ALYNE: (laughing) Pick one.

BOB: I guess the time he slugged the kid in the van cause he was pestering him. Tillman doesn’t like to be pestered. Once he says, “Don’t pester me,” you can’t keep it up, cause he just flies off the handle.

ALYNE: Time and time again, we’d call a meeting with the school, with Tillman’s doctors, and the team would try something new.

CAROLYN: Tillman has always had a lot of very endearing qualities to him, but then he would have these little moments—outbursts of frustration and of anger and some of the social issues that he had in his earlier years of getting along with others. It became clearer and clearer they were all related to self-esteem issues.

BOB: When he hit the kid in the van, he told us—which is very good that Tillman tells us stuff. So the next morning we jumped in the car and we ran there to talk to the principal. She said, um, “Well, I was getting ready to call y’all.”

ALYNE: McLean’s teachers calmly gave us the impression they’d seen it all. They praised us for listening and praised Tillman for trying.

TILLMAN: As each year went by, I started getting less angry, cause I think I was getting more help with what I needed. Now in seventh grade, I think I’ve only went to detention once. In the past, it would be time out, maybe every other day or detention after that. I think I’ve really come along in that area.

ALYNE: Over time we all began to see exactly what set Tillman off.

CAROLYN: He really is a sharp kid. You know, some kids are a little more oblivious than Tillman, they just sort of bumble through. And he really picks up on that stuff, and if he has a sense that you’re with him, you like him and he likes you, he’ll really work for you. If he has a sense that you don’t like him, I’ve seen Tillman shut down.

ALYNE: In the fifth grade, the kids changed classes. Tillman struggled to remember what he needed to take with him and hated sitting in different rooms. Detention followed, and slipping grades. And then, a miracle. Teacher Sarah Hall spotted Tillman in detention and decided she could help. The school put him in her sixth grade class. What Sarah Hall saw, says Carolyn McNichol, was our little troublemaker’s heart of gold.

CAROLYN: And this teacher loved him from the first day and gave him special jobs, gave him special things to do. Just made him feel like a million bucks, right from the get go and he totally responded to that. When you feel comfortable and when you feel safe in a class, it makes you more available for learning and I think he made huge strides in sixth grade because he was so available. He was like a sponge.

TILLMAN: Ms. Hall always kind of believed in me and made it easier for me because she used to help me and explain things and she never acted like I was stupid or anything so I think that really helped.

ALYNE: Tillman now likes school. After lots of intervention, including Fast Forward and Lindemood, he’s a good reader.

TILLMAN: Well, I’ve been reading a lot of different books. I’ve read the whole Red Wall series this year. Some people are like, wow, you must be really smart, cause sometimes, I’m reading really large books and they’re just like any other book—you know, they just have more pages.

ALYNE: Tillman doesn’t get in trouble anymore. With a big smile, Carolyn McNichol credits the co-team of Tillman and Sarah Hall. Sarah saw the glass half full and Tillman eagerly drank from the new perception she offered. A perception that he was a good kid.

CAROLYN: And, you know, that perception, he just picked up on very quickly and it really changed him—and changes their status not only academically as to how they’re available but socially with the other kids. All of a sudden, they’re no longer the bad guy, they’re no longer the troublemaker. So that makes them so much more sort of socially acceptable, kids play with them more, the social stuff starts to go well in addition to the academic stuff and it just spins very nicely together.

ALYNE: Things still aren’t perfect. Tillman can’t do math well and his writing is poor. Essays are a mess. He struggles under the heavy load of seventh grade homework. He gets extra services in addition to help in the classroom.

TILLMAN: I love the occupational therapy room because I have like this little kid I visit sometimes on Fridays and he’s really nice, I like helping him out and I work on my typing and cursive. I’m starting to write my name in cursive without knowing it, just thinking I was doing it in print.

ALYNE: What’s next for Tillman? He’s once again on the move. He’s changing schools again. Tillman has been comparing himself to the other kids. He knows he’s struggling as he sits alone, the last one to finish on every test.

TILLMAN: Right now, my organizational skills are really holding me back. Cause I see all the kids sometimes ahead of me and I’m kind of struggling to keep ahead, you know, in the same spot they are.

ALYNE: Next year, he’ll go to the Lab School of Washington, a private, special ed school that offers alternative ways to learn the same material. History students do videos instead of papers. Math students construct playground equipment. Art is everywhere.

BOB: He’s going from a very strict, conservative school where you wear a uniform to a school where people can dye their hair green, a much looser type of school and I’m just hoping, that uh, he wasn’t like I was when I went from high school to college and blew it out of the wazoo.

ALYNE: Actually, a little green hair wouldn’t be too bad, but Bob says I should keep that to myself. Our dreams for Tillman are big and broad.

BOB: And I’m hoping that Lab School will bring out his strengths. His strength in art and politics and understanding human nature. He says he wants to be a psychiatrist. He does have an understanding beyond what most kids that I talk to have of how the world works. I’m really looking forward to them, um, bringing out the creativity part in him.

ALYNE: Tillman says he’ll miss McLean and his friends, but he trusts us enough to move with enthusiasm. He says he doesn’t ever remember thinking he was stupid, but a long time ago he really did think so. We don’t ever want him to get so discouraged he’ll think that again.

TILLMAN: Your biggest enemy about self-confidence is yourself because I think if other people tell you you’re stupid and you agree with them and everything and you tell yourself you’re stupid, then I think that’s what gets you down the most instead of other people saying it. Cause if you think you can do better, then it doesn’t matter what other people say.

ALYNE: We still have moments of nervousness and anger and frustration around our house. Who doesn’t? But these days we also seem to have a lot of cheerful teasing and positive signs of independence and smiles. We have a kid who’s getting taller overnight. Tillman’s aware that adulthood is coming and he rushes to embrace it.

TILLMAN: I really do want to succeed. It is frustrating and sometimes I do feel like giving up, but from my experience I never have. I remember that I have had a lot of disabilities and I remember getting over a lot of them, like for reading, for instance and I used to get Rs and Ws mixed up. I used to pronounce Rs as Ws and Ws as Rs, so … and once I fixed that I felt really good about it because nobody taught me and I just did it on my own. I just pronounced it right and ever since, I’ve been doing it right. Some of the classes I know I’m really good at; I know if I just work hard at the other classes, I’ll probably get good at those too—just as long as I try.

ALYNE: Please wish my family luck, as we do you—all the people on this tape. We are all conscious travelers, retooling and moving on in a world that is sometimes very tough and sometimes welcoming. What joy we all receive when things are going really well. What a feast of celebration.

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(TRACK 9: The Doctor’s Advice)

ALYNE: Dr. Ted Hoch seems a gentle man, but underneath is a tough psychologist who specializes in helping people with severe disabilities. He’s seen what is possible, with his brother, Jeffrey.

TED: I had a younger brother with Down syndrome, but this little boy was talking and he was walking and he was dressing himself and he was toilet trained and he was going to school. There were many things that the folks at his school told us we needed to do because it would be helpful. Like in order to help him learn how to speak more, we should wait for him to ask for something with words instead of just giving it to him. And we didn’t like to see him sad, so we would just give it to him. And there were many times where I thought if I knew then what I knew now, things would have been real different.

ALYNE: As he progressed through medical school, Hoch realized that Jeffrey could have learned even more, if his family had pushed him to ask for what he wanted instead of just giving it to him. Jeffrey died at 13, and to this day, Hoch wishes he could have taught Jeffrey the skill of speaking up for himself.

TED: He would have become empowered, he would have done a lot more for himself. He would have become much like any other kid.

ALYNE: Being unable to ask for something damages self-esteem. So does feeling helpless. You get a real boost when you can do something, like opening that Little Debbie snack cake. Dr. Hoch helps his patients be more proactive, no matter what the disability. People like Stu, a 23-year-old with cerebral palsy.

TED: He was someone who would sit improperly positioned in his wheelchair for hours at a time in great discomfort without saying anything.

ALYNE: How did Dr. Hoch get Stu to advocate for himself? First, the doctor spent hours finding out what Stu felt passionate about. What he wanted so badly, that he was willing to try. What triggered Stu’s interest and the gleam in his eye we all get from time to time? Well, Stu wanted help using the telephone to talk to people outside his group home.

TED: The first phone call he made was to me on my cell phone. I asked him how does it feel to be talking on the phone—his word was marvelous. His homework was to make a phone call. He had my number, his mother’s number, several other numbers.

ALYNE: But then, one week went by, two, three, and Dr. Hoch was asking his patient why he wasn’t calling anyone.

TED: And he fired me. He asked me to leave and never come back again. And the next day he called me up and apologized and I told him there was no need to apologize. It was great to see him angry about something. I didn’t know he got angry. When I saw him the next week, he was angry about a lot of other things.

ALYNE: Turns out, Stu didn’t like having his clothes and his hairstyle chosen for him. And no one was taking him to church. That phone call, the act of taking charge of one small thing, opened up the world for Stu. Soon, triggered by the knowledge that change is possible if you ask for what you want, Stu began to speak up.

TED: He was taking control over things that he really should have had control of in the first place, but apparently no one told him it was okay for him to control that.

ALYNE: Controlling our environment. Ted Hoch has seen many attempts to assert oneself go awry. He says all of us react the same way. We pay attention to what we get more of, praise or blame. Dr. Hoch remembers Sam, a 10-year-old whose family and caregivers were trying hard, but Sam’s aggressive behavior took center stage until Dr. Hoch advised them to think about him as a little boy, not just a child with a diagnosis.

TED: Watching him in the aftercare program, I saw him doing many of the things that other children were doing but I think there was just a heightened acuity for this boy. And what he did became thought of as worse, possibly because he had those labels attached to him, when really there was very little difference between what he was doing and what others were doing.

ALYNE: Between Sam’s tantrums, his parents and caregivers saw a friendly kid. He liked asking for books and toys and enjoyed people. Suddenly, the times when Sam became frustrated took on a whole new meaning, as the team began to parse out why he got off track.

TED: We were able to discuss things that he does do well and what it takes to get him to do those things well. Providing him with the materials, noticing when he’s doing those things, sometimes doing those things with him. Things got a lot better at home. The difficulties are still occasionally there, but they’re far more manageable now than they were and far less frequent.

ALYNE: Less frequent, but not eliminated. And that’s okay. None of us is perfect. We learn from our mistakes. We are, each of us, like inventors, called upon to reinvent who we are time and time again.

TED: That’s how we learn to do things. That’s how the light bulb got invented. How many light bulbs failed before there was one that worked?

ALYNE: Thomas Edison kept working because he was deeply interested in science. He felt as passionate as Matt feels about jazz, Aaron about art, and Tillman about reading. Making that passion real, something that you act upon, is key. Dr. Hoch is still seeing the results of a chat he had with Joe. It happened months ago when Joe—shy, nervous, and anxious—shared a secret over coffee.

TED: Making bookmarks. And that was one of the first times he’d ever mentioned liking to do anything. And we had a contract; I would buy each of the bookmarks for 50 cents each from him if he made them for me the next week. And he had them, he had many homework assignments before that he never completed, but he made his bookmarks.

ALYNE: Dr. Hoch had found the trigger that would motivate Joe. A way to engage Joe and boost his self-esteem. Hoch found a library that wanted the bookmarks, near Joe’s home so he could restock them regularly.

TED: We provided them with a canister, a little wooden canister, that said “Free bookmarks, Take One” and a stack of his bookmarks and when he brings them there, the librarians are just gushing with how beautiful they are. Almost every time, all of the bookmarks from the previous week are gone. People know him for his artwork. He’s the guy who makes those bookmarks and he’s met quite a few people this way.

ALYNE: The librarians tell Joe that he’s filling a real need. Suddenly, he has a role to play.

TED: The more you help them get out of the role of being a consumer and someone who just takes and takes and takes and being in the role of someone who contributes and helps other people, I think then they feel a whole lot better.

ALYNE: Now that he feels better about himself, Joe can try for another goal. A big one. A year or two ago, he had a bad fall. He’s terrified he could fall again. Gently, Hoch guides him up some stairs to a restaurant he will like. A few steps up, and he’ll be enjoying a fine meal and a nice chat.

TED: And in the middle of taking the stairs, I said, “Look at what we’re doing. We’re halfway up these stairs and nothing bad has happened. You’re doing a great job with this.” He started looking afraid, but we kept going up the stairs and I told him, “It’s my job to not let you fall and we have to get up these stairs.” Now, whenever possible, I park where we have to go up stairs because there’s a goal on the other end that he wants that he can only get to if he takes those stairs.

ALYNE: After years of isolation, Joe is going out again. He likes his new job as a housekeeper in a hotel. And Joe loves music. He sets up the stage for a local orchestra. The musicians thank him in their program and well over a year and a half since he first filled the wooden canister, he’s still bringing by bookmarks.

TED: Hearing that his work had value helped him to keep going, to get out of bed, to get out of the house, to do some work, to exert some effort. Because it was important, and it’s quite possible that that helped translate into what he’s doing now.

ALYNE: The key here is hearing how his work had value. What he does. In other words, you can’t just think and feel your way out of low self-esteem. You must do something. Dr. Ted Hoch has a list of what to do to develop self-esteem. One, find something you are interested in and go for it. Two, take a risk and try. And three, it’s okay to fail; try again. Most of all, remember rule number one. Do something with relish.

We are all driven by a fire inside, an individual flame that each of us recognizes as uniquely our own. We draw incredible strength from our interests and passions. For Neal, it’s karate. For Holly, it’s teaching. For Jackie, it’s college. For Mario, it’s passing on secrets of independence; for Tillman, reading; and for David, computers. Developing self-confidence and finding joy in life is all about thinking about what we really want to do and doing something about it.

AARON: And if you want to do that thing that you most feel passionate about, don’t be afraid of it. You must do it, because if you don’t, you’ll never get there. You’ll never go up the next step. And I believe that if you go up the next step, there’s a gazillion other steps you can go up.

TILLMAN: Your biggest enemy about self-confidence is yourself because I think if other people tell you you’re stupid and you agree with them and everything and you tell yourself you’re stupid, then I think that’s what gets you down the most instead of other people saying it. Cause if you think you can do better, then it doesn’t matter what other people say.

NEAL: I get a star, star, star, star—big boy.

JACKIE: The first thing I say to her is how’s life, how’s the family?

HOLLY: It’s cool to have someone to talk with.

DAVE: I know more about computers than, I bet, 99% of the people I meet. I think that’s a gift to me. And I think it’s really great that I can do that.

MARIO: I built my whole life around building others up. I like to laugh. I like to joke. But also, joking and laughing, you can still learn at the same time.

TILLMAN: Some of the classes I know I’m really good at; I know if I just work hard at the other classes, I’ll probably get good at those too—just as long as I try.

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Credits

NICHCY would like to recognize the people who were involved in producing this audio program.

First we thank our program officer, Dr. Peggy Cvach at the Office of Special Education Programs, U.S. Department of Education for her commitment to NICHCY.

Alyne Ellis wrote, narrated, and produced the program. Our editor was Theresa Rebhorn. The tape was mixed and mastered by Paris Morgan of Morgan Music and Recording. A big thank you goes to the Matt Savage Trio for sharing their music with us. It is Suzanne Ripley, director of NICHCY, whose vision made this program possible.

We send out special thanks and appreciation to the many people whose experiences and insights are heard on this program. Mario Duncan, Aaron and his mother, Dave and his mother, Matt and his mother, Neal and his mother, Holly, Jackie, Nicole and her father, Tillman and his father and mother, John Funkhouser, Carolyn McNichol, Tracy Thomas, Dr. Carol Englander, and Dr. Ted Hoch.

This program was developed by NICHCY, the National Information Center for Children and Youth with Disabilities. There are two printed booklets that accompany this program. Contact NICHCY at 1-800-695-0285 for copy of the booklets as well as additional copies of this program. Our final thanks to the U.S. Department of Education Office of Special Education Programs for making this program possible. NICHCY operates through cooperative agreement number H326N980002 between the Office of Special Education Programs and the Academy for Educational Development. We are pleased to offer you this program and hope you enjoyed it.

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