“Having Down syndrome makes the world happy,” says Bridget Brown, 32, who wears about five different hats phenomenally well.
The first inclusion student to graduate from Hinsdale South in 2005, she says, “I am passionate about inclusion because I was the first one included in my community and district.”
The best thing about her inclusion experience? “Learning the same things everyone else did and being a full part of the school experience. I am the person I am today because I was included and it scares me to think what my life might look like if I was not included.”
Bridget is a public speaker through Butterflies for Change, an organization founded 15 years ago by Bridget and her mom, Nancy.
She says, “I speak in public schools, districts, and to congregations about inclusion and self-determination—how to use it in a way to be a leader in your own life. When I speak about disability awareness and respect, people need to understand that people with disabilities are here for a purpose and that God made us.”
Bridget has spoken to thousands about “what it is to live a successful life in a community,” and even had a personal audience with the Pope in 2017, when she was invited to Rome to take part in a conference initiated by Pope Francis about the engagement of people with disabilities in the daily pastoral life of the church.
“Meeting the Pope was exciting to me! The most important thing to know is that he has helped with the dignity of people with disabilities,” says Bridget, who delivered two letters when she went, including one she wrote regarding the people of Iceland, where babies with Down syndrome are now killed at a rate of 100 percent, and another from a friend, advocating for the inclusion of children with disabilities in Catholic education.
In her letter about Iceland, Bridget wrote that her heart breaks thinking that she might be among the last generation of people with Down syndrome, noting, “The world will never again benefit from our gifts. I continue to pray for all the people who think we don’t have the right to live.”
When she met the Pope, Bridget says, “He told me that I am a prayer warrior, and asked me to pray for him. I also blessed him, and he blessed me, and then hugged me.”
So how did Bridget go from high school graduate to traveling the world and trading blessings with the Pope?
First came the transition years. She says, “During transition, I attended TCD (The Technology Center of DuPage) and earned a certificate in Early Childhood Education. From there, I got a job working at a pediatric clinic at the University of Illinois at Chicago, where my dad works.
“Now I’m a children’s health educator at the oral health care clinic for dentistry. I take big teeth and toothbrushes around on a cart, and go around to show people about the importance of brushing.”
Over the years, she has also begun to assist the dentists by helping make composites (“I learned how to make a perfect impression model with no bubbles.”), or passing instruments when needed. “Sometimes I also hold the kids’ hands,” she explains, noting, “I take the train, and the el, and bus to work with my dad.”
A pianist who has always enjoyed community theatre and acting, Bridget is a member of the Screen Actors Guild, and says, “Acting helped me get my career, and I love doing it!”
Currently making ready to appear as Mrs. Corey in a performance of Mary Poppins, Jr., by the UPS for DownS Theatre Company in partnership with EGDE Theatre, she’s been featured in an HBO documentary, and has appeared in several movies. “I played a French girl in LOL with Miley Cirus, Douglas Booth, and Demi Moore. That was really cool.”
When asked how she prepares for larger roles, she says, “You have to work really hard. Sometimes we put the songs on the walls in big letters and make the song go the way the music goes. Up when the notes go up, and down when they go down.”
What goals does Bridget have left to fulfill? “My number one goal is to be a leader and to inspire people with disabilities. My dream is to enable the human spirit.”
She’s meeting these goals in variety of ways.
A life-long learner, Bridget has taken many classes at the College of DuPage, and now sits on the advisory board, helping others gain access to classes. “One of my goals is to pass the reading placement test at COD so I can take more classes. I want to take Greek Mythology.”
Bridget is also an active member of the board for the National Association for Down Syndrome, “helping more people with Down syndrome become public speakers.”
Here’s just a bit more from Sam’s interview with Bridget:
Who is your hero? “My hero is not like a Disney hero. My hero is my family. The reason why is that I look up to them for their leadership skills, their social skills, and their smiles. I love having fun with my family. They make me feel like I am at home.”
What makes you happiest? “I am happy when I am with my family, especially when I see my nieces and nephews, and especially my baby nephew because he makes me laugh the way he walks and smiles. My favorite activity is to camp with my family. My most memorable trip was when we went to Colorado to see the Aspen trees and our oldest friend. We stayed in a yurt, and I got to speak at a convention.
If you could do anything, what would you do to make the world more beautiful? “I would give out lots of Diet Pepsi and have a national pajama day with boneless wings. I would also want a world without evil or hate—and with inclusion for all people with disabilities.”
We love your ideas, Bridget! To learn more about Bridget’s visit with the Pope, or about how to book her as a speaker for an upcoming event, please visit her website at: www.butterfliesforchange.org
Little Something Extra Bakery in Oak Lawn, Illinois, comes by its name honestly. Maria and Bill Veal say their son Billy’s extra chromosomes inspired not only the name, but the bakery itself, which employs Billy and three other people who are differently abled, including Billy’s best friend, Angel.
With art on the walls created by students at Oak Lawn Community High School reminding guests that happiness begins wherever you happen to be, the bakery has given Billy the opportunity to take on more responsibilities, and to try his hand at different tasks—including everything from preparing dough and greeting customers to bussing tables and mopping and sweeping.
Billy graduated from Harold L. Richards High School in May, and says a few of the highlights included going to state and winning the gold medal in Special Olympics basketball, and being named Honorary Captain of the football team. Billy’s early school years were difficult since he attended several different schools in five years because the facilities for Billy’s group kept changing. Billy remembers the most difficult part was, “getting yelled at.”
Now in the transition program, Billy also works at both DoubleTree and at Taylor Candies. He says he enjoys “working with friends” at the DoubleTree, where he folds towels and does the laundry.
Here’s the rest of Sam’s interview with Billy, who was known as the “Mayor” of his junior high, and now brings his empathetic, friendly spirit to work every day at Little Something Extra Bakery and Café:
What do you like to do in your free time? “Watch superhero movies. Play basketball and volleyball. Track and bowling. Play video games.”
What makes you happiest? “He came back—having my Dad back makes me happy.”
What are your dreams/goals for the future? “I want to work. I also want to jump out of an airplane with a parachute. I want to go back to Florida.”
What are some of your favorite memories? “Parasailing on the boat in Florida. I liked going down. Graduating from high school. Bowling, when I beat Dad, and going to the Blackhawks game.”
What were your favorite things about Thanksgiving? “Turkey, ham, cornbread, stuffing, ice cream, and cookies. And Uncle Tito because he’s funny.”
Who is your hero and why? “Steph Curry, because he’s good at three pointers. And LeBron James. And my Dad.”
We so enjoyed our visit to the Little Something Extra Bakery (Billy’s Breakfast Sandwich was a favorite for Sam, too), and we are wishing Billy, Maria, and Bill huge success with this new venture. As Billy says, “Bring some money!”
Sharing this great oldie in honor of National Down Syndrome Awareness Month! Have a listen to Sam’s 7th grade history rap from Franklin Middle School in Wheaton, Illinois. Proof that inclusion rocks! We can’t share this without shout-outs to Mr. Gordon, Sam’s phenomenal aide; to his fabulous history teacher, Mr. Bonnamy; and to Julia Shaw, the talented classmate who sings the solos. Enjoy!
“This is my favorite job,” says Italian-born Sara Brinkman, 20, whose bright smile has been welcoming guests to Honey-Jam Café in Downers Grove since January. A first-year student in the District 99 Transition Program (through which she found her job), Sara was thrilled to be hired on as a regular employee at the café this summer. “When I did my interview, the owner sat down and talked to me politely. It’s my dream because I was thinking about saving my money.
“I’m the host,” she explains, “I give people their menus, fold silverware, help the waitresses with the food and drinks, and when customers bring me their receipts, I use the cash register to click the number for their table, and they give me their money or I slide their card. I love it here because they are so nice to me.”
Sara already had a bit of experience after working as a cashier at a camp store last summer.
Born at a U.S. military base in Italy, Sara waited a long time to return to the land where she spent her first two years. With three sisters and a brother born at three other military bases in the U.S., Sara’s visit to her base was the last, because it was furthest away. “We went to Italy for Christmas last year,” she says. “That was my happiest moment because it is my favorite base, and I got to see where I was born and speak Italian.”
Sam loved looking through Sara’s scrapbook from her trip to Italy, and hearing all about her life! Here’s the rest of Sara’s interview:
How do you like the transition program, and what have you learned so far? "I like it so much! I work really hard. I clean the dishes, cook food, do housekeeping, sort recycling, fold the laundry, and clean the kitchen—wiping down the chairs and the tables. I love school because I love talking to my friends and to my teacher. The worst part is cleaning the garbage. It’s hard to focus on that because I have to be careful not to get the garbage on my hands.
"I also do a swimming lesson at the YMCA, or run on the treadmill."
Tell us about the classes you’ve taken at College of DuPage. "At COD, I am learning how to babysit kids in a childcare skills class. I also took a class for office skills. I’m really good at typing on computers, and I do like making copies. For that class I also had to take a test, and I worked really hard and practiced my flash cards on my computer to study for the test."
What do you like to do in your free time? "In high school, I did gymnastics all four years. I can do a back flip, a cartwheel, a handstand, and a floor routine. We just had a party in the cafeteria for my friend who just graduated. I do love gymnastics. I also do track and basketball. I love basketball. And I watch Netflix and YouTube—those are my favorite activities to do on my laptop."
What do you like to do with friends? "I like to hang out with my best friend from my gymnastics team. I love to see movies, or do Laser tag. I love my friends because they are sweet to me."
What’s the accomplishment of which you are most proud? "I am proud to be independent. I work hard so that when I go to college, I can clean my room and do my laundry and cook by myself. I need to be organized like my sister. One of the things I love most is being independent—like when I took a plane trip by myself to see my aunt this summer."
Who are the most important people in your life and why? "I love my friends and my teachers. They are so unique. I love my family so much—my mom is the best. I also love my brother and sisters. They are my favorite siblings."
Who do you admire? "My favorite is Justin Bieber. He’s so fun, and I love watching the DVD about him. 'Never Say Never' is my favorite show. I went to his concert for my birthday a few years ago–I started crying because I love him and I have his poster. I also went to a JoJo concert a couple months ago, and she bent down and touched my hand. That made me speechless!"
What do you think people should know about you? "I’d like to continue to travel, to go to Germany with my cousin; and I also would like to go to Buenos Aires and maybe to Africa. Also, I do art, and I love to dance and sing."
What does Down syndrome mean to you? "It makes me happy and I love it. It makes me proud of myself."
Tell us more about your goals for the future. "I need to focus on my school. I need to be kind and polite to everyone in my life. I would like to go college, and maybe get a job at an Italian pizza place!"
In the first five minutes of meeting Michael Redmond, he had our hearts. He walked in, found a wand, pointed it at his mom, and shazam, pretended to transform her everyday outfit into a beautiful dress, and then proceeded to lead her in a waltz.
Imagination? Check! Princely manners? Check!
A rising fifth grader at Washington Elementary, Michael’s favorite subjects at school are reading and math, but at home, he enjoys learning about space and the planets, and has done so many cool things with his family—including viewing the solar eclipse, going geode hunting, and visiting a local library where they spotted a dinosaur! “It had big, sharp teeth,” remembers Michael. Part of a youth bowling team, Michael takes great pride in the plaque he won for his season high game.
Here’s more of Sam’s interview with Michael:
What do you like best about school? “I like Alex and Mandy in my class, and Tia.”
Who is your favorite teacher? “Mrs. Lipniski and Mrs. Burkard in third grade.”
What are some of your favorite things to do? “Watch movies. Play with toys at Reese’s house. She’s my best friend. Playing golf with Daddy. Also softball, catch, bowling, and Frisbee.”
What are some of your favorite movies? “The Lorax. Boss Baby. The Lost Dog. Moana. Sing. Peanuts.”
Where are your favorite places to be? “I like Target. And Aunt Caryn and David’s house. Dillon and Drew are my cousins.”
What was your favorite trip? “I went digging for big rocks with Daddy and [my sister] Heidi.”
Tell us some of your dreams for the future. “I want 3 cats and 3 dogs."
Where would you like to work? “Starbucks.”
We hope the rest of your summer is amazing, Michael, and we can’t wait to hear all about fifth grade!
“It’s always good to be me,” says Julia Neri, 23, who landed her dream job working as a cashier at Target. “I still like it. I love my people that I normally work with. My co-workers and my manager have been really good to me. I get to see a lot of people that I know, including my old teachers and my principal.”
Now Julia’s got her sights set on the next goal—becoming a front-end manager! “They watch all the front lanes. Whenever they [cashiers] have their light on, I would come over to help them—like if they need a state I.D., or want to use WIC check or tax exempt letter. I would also help at guest services with customers who are upset and mad. I can handle anything. I am a people lover.”
The day we spoke, Julia was to begin training at guest services the very next day. “They have to see if I can multitask,” she explains. When asked if she was nervous, Julia said, “Not really. I’m excited.”
Although Julia doesn’t drive, she gets herself to work independently. “I take Lyft if my Uber doesn’t work,” she says.
So far as Julia’s is concerned, Down syndrome simply means, “Being normal.” And when Sam asked Julia if there were anything she’d like to change about her life, she responded, “I wish I had a magic pill to take my celiac disease away.”
Here’s the rest of Sam’s interview with remarkable Julia:
Do you want to do any other jobs at Target—or is there anyplace else you’d like to work? “I want to stay here. This is my Target family. They give me respect. They make me feel like I’m at home here.”
Tell us about some of your happiest moments in life. “I have a lot of happys. I like to hang with my friends and my boyfriend. I like playing basketball and going to movies. I like any movie. I know all the actors. Some of my favorites are Pitch Perfect 3, A Rough Night, Love Simon and Jurassic World.
“My boyfriend and I have been dating for 4 years. He went to my high school. He is the biggest crush I ever had. “
Who’s your hero and why? “I have a lot of heroes. I would say my co-workers and my manager, because he knows everything about how I got here. “
What do you like to do in your free time? “On my days off I like to go swimming. I’m a really good swimmer, and I’m a really good bowler too. I also play bingo at the senior center. I go to Weight Watchers, and to a literacy class. On Thursdays I go to the health center and help my boyfriend coach a soccer team at the Park District.”
What advice do you have for others with Down syndrome? “I would start by getting a part-time job.”
What’s been the hardest thing you’ve ever had to face, and what got you through it? “Probably standing up to people—like if there’s a problem with something.” In Julia’s first two weeks, she had one very irate customer. “I told her ‘I’m still learning.’ But she was just so mad. It was hard for me. Now I know to call my manager for help. I still stand up for myself, but sometimes I do need help.” After that experience, Julia’s co-workers sent her an encouraging card in the mail that said, “You are awesome! We love you! You are the best!”
Where do you see yourself in five years and do you have any other life goals? “I do want to get my own place, close to around here and close to work. I probably want to get married one day, maybe in 10 years. I want to get more hours for work—probably 40. Now I work 28 to 32 hours a week, but I could work every day.”
A bit more background . . .
After graduating from Conant High School in Hoffman Estates, Julia attended the transition program while also taking classes at Harper College’s Career Skills Institute three days a week. It was while in transition that Julia says, “I learned that I’m good at math.”
Julia got her first job at age 18 as an office assistant at the nearby school district. After many applications and closed doors, Julia was hired at Target at age 21. Julia’s mom, Stephanie, says they’ve found that interviews went better with an advocate present, and that “everything clicked” for Julia once she started training to be a cashier, because, “She wanted to do it.”
Sam was honored to be the subject of a documentary! Sarah Taschetta is a talented local film student who will be attending Columbia College Chicago in the fall. When she asked Sam about featuring him in a short film, he said, "Of course!" Here's the result of her hard work.
Part of what Sam and I have loved about the experience has been reading people's varied responses to the film, including what they have written when sharing the film on social media. Here are a few of our favorites:
"This. Hear people’s stories. Everyone has one."
"'Everyone is important...' Yes, Sam. Inspiring short film!"
"Amazing. Uttterly moved and completely inspired by this."
"Watch at your own risk--it will bring tears to your eyes. Sam wants to honor God and inspire others, and he does!
"We all have a voice."
"This is the best thing you'll watch today."
"This is a great video. So often someone with Down syndrome is treated as incapable of greatness, when in reality they can be someone who is extraordinary. Here is a link to Sam’s blog, which features interviews and posts with some of these extraordinary people: http://www.peoplewithdownsyndrome.com/"
Hope you enjoy!
"We make the difference," says Sam Anderson of people with Down syndrome. Watch the trailer for Sarah Taschetta's documentary, told entirely from Sam's perspective, and stay tuned for the soon-to-be-released final film!
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“Most people don’t like giving speeches or presentations, but I love it. I don’t get nervous, even if I am talking in front of 500 people,” says Michelle Anderson, 23, who has come a long way since she discovered her passion for public speaking in high school. Since that time, she participated in a training program to become a self-advocate through the National Association for Down Syndrome, and has spoken at hospitals and medical facilities, as well as at local schools to more than 8,000 students with local public speaker and author, Nancy Goodfellow. Says Michelle, “I let everyone know that people with Down syndrome and other disabilities all have something to say or share. Many of us use our voices to talk and some people use sign language or other technology, but like everyone, we learn our own way and we have our own dreams, hopes, and wishes.” If you’re interested in having Michelle come to your school, visit: http://www.nancyfgoodfellow.com
Following is the rest of Sam’s interview with Michelle, who is also currently taking a culinary arts class at a local community college to learn the kitchen skills she’ll need to be independent.
What do you talk about when you give speeches at schools? “I share a little bit about myself. I let them know I work part time, give presentations, have plans to continue my education, and I spend time with friends pursuing my interests in fashion and theater. I also do sports and music.”
What’s the best question a student has asked? “Many students ask me what it’s like to have Down syndrome. I tell them that my life is great, and that I don’t know what life would be like if I didn’t have Down syndrome.
“Students also ask me about my friends. I let them know that some of my friends have disabilities and some don’t—I want kids to know that I made some amazing friends in school and they helped me to be a good student.”
What other activities are you involved in? “I’m in a monthly book club, a Bunco club, and I am a Young Life Capernaum Leader. I compete in many Special Olympics sports including basketball, softball, volleyball, snowshoeing, and track. I love my yoga classes and tracking steps on my Fitbit. My favorite activity is going on vacation with my family and friends.”
What’s the accomplishment of which you are most proud? “I am proud that I have been able to advocate for myself at schools, and in my community to help myself and people with Down syndrome and other disabilities.
“I am also proud that I have jobs at Aurelio’s Pizza and the Naperville Park District Riverwalk Café. They are great places to work, and my co-workers are fun.”
What’s the most difficult thing you’ve had to face, and what got you through? “I lost my dad to cancer seven years ago. Knowing that he will always be a part of me, having lots of fun memories, and knowing that he would be proud of me has helped.”
What do you like to do in your free time? “I like to listen to my music, hang out or text with my friends, and read scripts. I also love making plans with my boyfriend and my girlfriends.”
What do you do with your friends? “I like going to movies, dinner, concerts, and sporting events with my friends. I also love going to WDSRA special events, like the Penn and Teller Show, iFly, and the dances.”
At what moments that you remember have you been the happiest? “Going to my prom at Naperville Central, and to graduation, and going on vacations with my family and friends are my favorite memories.”
Out of all the people you’ve met over the years or read about, who do you most admire? “There are many people I admire and I can’t think of just one person. I would have to include my family, and all the people who have helped me in school, at my jobs, and in the community.”
Where is your favorite place to be? “I love to travel and have been lucky to do some fun things like going to Young Life camp in Michigan, visiting my elementary school friend at her college in Nashville, celebrating birthdays with my girlfriends in Vegas, vacationing in Hawaii and Mexico, and touring sites in Ireland and England. My favorite places include Arizona and Minnesota because I get to see family.”
What are some of your goals for the future? “I want to continue my education and employment plans to help me with independence skills. One day, I would like to be an usher at a Chicago theater.”
The road less traveled. It’s a road Amanda Ewald, 19, has traveled her whole life—to find inclusion opportunities. She became the first young woman with Down syndrome to attend Buffalo Grove High School, and to participate on the women’s swim, badminton, and bowling teams there.
“I hope to be a ‘Super Senior’ there next year,” she says. She and her family believe it will be best for her to stay in an inclusive setting and to continue making academic progress, so we wish them well as they head into their IEP!
Read the rest of Sam’s interview with Amanda below, including her tips for fellow actors with lots of lines to memorize (She recently starred as Dorothy in the UPS4DownS production of the “The Wizard of Oz”).
You did such a great job playing Dorothy, how did you memorize all those lines? “I got the script and mom helped me. We worked on it a few times a week. Every time, we tried to do more. It took about six months to learn all of them.”
Any tips for others? “Just keep going over and over them!”
Was this your first musical, or have you taken part in others? “I’ve been in ‘Fiddler on the Roof,’ the second one was ‘Guys and Dolls,’ my third was ‘Hair Spray,’ the fourth was ‘Music Man,’ then I was the young Nala in ‘Lion King.’”
Where do you attend school and what are your favorite classes and why? “I’m a senior at Buffalo Grove High School. My favorite classes at school are math and reading. My other favorites are lunch and gym. I’m also doing a preschool class called Human Growth and Development. I like working with the kids. We play games—lots of London Bridges, tag, and Red Rover—and we have circle time.”
What do you like best about high school? “I’m a good swimmer. I do aquatics. I’m on the girls’ swim team, and on the bowling and badminton teams.”
What other activities are you involved in? “I do Buddy Baseball with Brett, and I do Buddy Soccer.”
Who is Brett? “He’s my boyfriend. He was the Homecoming King. I want to marry him. He’s nice and he’s friendly. He’s also really funny, and so sweet. I like text him, and he calls me. We met in preschool, and we’ve gone to six dances together. Turnabout was my favorite because I took a picture in a photo booth with him.”
Tell us about Homecoming. “We had a reception with the principal. We went to the game, and they had a parade at the game. I got to ride in a convertible car with my boyfriend. It was all pink, and it went around the track. We had crowns, and robes, and I got flowers.”
What do you like to do in your free time? "I do swimming, and I like to watch movies with my mom, listen to music, and play on my iPad. I also play a lot of games with my mom, and I love to hang out with my friends.”
Who’s your hero and why? “My mom, because my mom is my favorite. She takes me to breakfast, and to dinner, and to lunch. She also took me to Disney World.”
What are your goals for the future? “I want to be a doctor, a dentist, a lifeguard, and a vet. I also want to work at Red Robin. It’s my favorite place to eat.”
What does Down syndrome mean to you? “I like it, because I do a lot of things with friends who have Down syndrome. We have parties, and we get to do things like go to Waterworks on Saturdays.”
For Jamie Brooks, happiness is . . . being on stage. One of her happiest moments, she says, was singing “Good Morning, Baltimore” in her high school talent show. “The spotlight was on me, and I loved it! I always love it,” says Jamie, 21, who just finished playing the Wicked Witch of the West in an UPS for DownS production of “The Wizard of Oz,” and is rehearsing to play Mrs. Potts in “Beauty and the Beast” at the Palatine Community Theater this spring. With a grandmother with a passion for musical theater, Jamie’s been to more musicals than she can count, seeing several multiple times. The first show she remembers seeing was “Fiddler on the Roof” when it was on Broadway in New York. “I loved it! I’ve seen ‘Wicked’ on Broadway in New York, in Chicago, and in Kalamazoo,” she says. For more from the fun and funny Jamie, here’s the rest of Sam’s interview:
How many years have you been performing? “This is my seventh year. I’ve also been in ‘Romeo and Juliet’, ‘Lion King’, ‘Guys and Dolls’, ‘Music Man’, ‘Fiddler on the Roof’, and I was Tracy Turnblad in ‘Hairspray’.”
Do try-outs make you nervous? “No, I’m not nervous. I’m a very good actor.”
What did you enjoy most about playing the witch? “I loved melting, and singing the jitterbug song. I made it funny.”
Tell us about high school. “I was Homecoming Queen my senior year at Hersey High School. Some of my favorite things about high school were being part of the Dynamite Dancers, the Super Singers, the Super Buddies, and the Spirit Squad, AND the Homecoming game, the parade, and the dance. My friend Brett was Homecoming King—he’s an actor too.”
What’s life like now that you are at transition? “I go to Forest View. I cook lunch, have class, and go to work every morning. I do the coffee cart two mornings a week. I like using the iPad and doing the money. I also work in the food pantry at Willow Creek Church three mornings a week.”
Where else have you worked, and which job do you like best so far? “I’ve worked at IKEA and T.J. Maxx. I like working at T.J. Maxx best because I re-stock the clothes and shoes—and I like high heels and dresses.”
What other activities do you enjoy? “On Mondays, I have singing lessons with Michelle who also helps me with my lines, and with finding pitch.”
What do you like to do in your spare time? “I like ice skating, swimming, snorkeling, tubing, and watching Twilight and Liv and Maddy on Netflix. And I play my songs and dance like a crazy chicky. Some of my favorite songs are from Grease and Abba. I’d like to try waterskiing. And I try to do my treadmill everyday. I get $5 when I do.
“I also like to travel. I like Mexico best because I like the Secrets and Dreams hotels. I’ve also been to the DR, Jamaica, and the Bahamas. In the Bahamas, I went to a water park and went on the big slides. I was scared.”
Who’s your hero and why? “Robert Patterson. He’s quite a guy. He was Edward in the Twilight movie. He’s cute and dangerous.”
What’s the hardest thing you’ve had to face? “I miss my sister, Hannah, and my twin brother, Max [who are both in college]. I also miss my dad when he’s gone. Making healthy shopping list is also hard. But I want to do it because I want to be in a bikini on the beach, and I want to get a ‘T21’ tattoo like my brother and my sister.”
Tell us about your dreams for the future. “I want to be on Broadway and live in a penthouse. I also want to be an actor, and a special ed teacher at a day care center. I love kids. I want to teach kids about acting, friends, and leadership. I also want to work at my Uncle Chip’s restaurant as a hostess and a bartender.”
To say that Lindsey Pazerunas, 23, leads a full life is an understatement. Lindsey, who recently starred as Dorothy in the UPS for DownS production of The Wizard of Oz, is a cancer survivor who works two days a week as a server at an assisted living facility, and volunteers with preschoolers two days a week at Holy Family Catholic Academy, all the while keeping a buzzing social calendar.
“My mom can’t keep up with it all. I’m a very social person,” Lindsey says. In addition to attending events through WDSRA and UPS for DownS, and doing speaking engagements as a self-advocate for the National Association for Down Syndrome, she’s part of a monthly Bunco group, works out three to four times a week at the YMCA, and has a boyfriend, a circle of friends, and a family who all like to hang out.
In five years, Lindsey hopes to be working with children. “It’s my life goal,” she says. For more from Lindsey, read the rest of Sam’s interview:
Tell us about the tryouts for the musical. Were you nervous? “No. I’m never nervous, because I have a lot of experience doing plays. This is number 11 for me. I started in 2008. But I haven’t had a lead in five years, not since I was Belle in Beauty and the Beast, so I worked really hard this year.”
How did you memorize all those lines? Any tips for others? “I have a voice coach who helped prepare me for the role, and I also had a friend who came over two days a week to read the lines with me. She would have the script, and I would try to say the lines without the script.”
What was the best thing about being in the musical? “I loved every single thing about it—all the songs, costumes, dances, but I think the ruby slippers were my favorite. They were character shoes, covered in red glitter.”
Where did you go to school? “I went to Fremd High School in Palatine. I also did one year at Harper College. I really enjoyed my self-advocacy and communications classes. I am a self-advocate, so those classes helped me in ways to self-advocate, to talk more, and louder and with clarity. I speak about four or five times a year to promote awareness of people with Down syndrome and share my life experiences.”
Where do you work? "I work at Lake Barrington at an assisted living center. I’m a server. They really enjoy me being a part of their team. I work on Sundays from 10:15 until 3. I take drink orders, and see if they would like salad with dinner. I also take dessert orders as well. On Mondays, I work dinner hour, from 3:45 until 8. I’ve also started taking trays to people’s rooms. I have a test to get ready for, so I have to study."
What are the best and worst things about your job? “The best thing is that is that I make a lot of acquaintances. One lady even asked if she could adopt me! The worst thing is that Sunday mornings can be hectic—and this year, I had to work on Christmas day and Christmas Eve.”
How do you help at home? “Besides taking care of my dog, I never say no to anything. If there are dishes to be done, I’ll do it. Whatever it is, even getting the mail, I’ll do it. I never say no to anything. Sometimes I think I don’t want to do it, but I don’t say it. It’s just the way I am . . . Love is an important part of my family.”
What does Down syndrome mean to you? “It has meant a lot to me to live a normal life and to be part of a family, and not be treated differently. My parents have always treated me like part of the family. I wasn’t different, and that has made a huge impact on who I am today. I am able to do many things today—a lot like my siblings and my peers.”
Who’s your hero and why? “My mom is my hero. She’s my cheerleader. We are each other’s best friends. I was diagnosed with leukemia when I was six years old. I had to do all these hospital visits, all the pokes. I didn’t really know what cancer was at that age. Now I do know about it. I’ve been a survivor for 17 years. My mom has always been there for me.”
The first registered lobbyist with Down syndrome, Kayla McKeon has packed a lot into her 30 years of life, including giving “way too many speeches to count.” She’s been a Special Olympics Athlete and Spokesperson, and a member of the National Down Syndrome Society's self-advocate advisory board and DS-Ambassador program. She was also NDSS’s self-advocate of the year in 2016. Before joining NDSS as the Manager of Grassroots Advocacy, Kayla interned with U.S. Representative John Katko.
In addition to all of this, Kayla is simply a lovely person to chat with. Enjoy Sam’s interview, and Happy New Year, everyone!
What did you do in your role as an intern with Congressman John Katko? "I interned with him two days a week. I went to public events, representing him at events, and doing things like accepting citizenship awards. He helped me get this job."
Tell us about your college experience. "I have about 33 credits toward a degree in general studies [from Onondaga Community College and Lemoyne College.] In the beginning, I just took one class at a time, but then I figured out that I wanted to get serious about college, and I started taking more at once. I’m about halfway done."
When did you get your driver’s license and tell us about the process?"Yes, I can happily say that I have my driver’s license. After 26 years and 5 road tests, I finally got it! I got the written part without a problem. It was the road test—the double stop sign, the parallel parking, there was always something. When I finally got it, I was jumping up and down."
You’ve done so much public speaking. Have you kept count of how many speeches you’ve given? "Way too many to count!"
What’s been the most memorable speech you’ve given and why? "I did my first one in Syracuse, New York. When I did that it hit close to home for my parents. I discovered public speaking was something I really enjoy. It’s my first love. The most memorable was probably when I spoke for teacher appreciation [at Gillette Middle School] in front of 2,000 people. I spoke about my abilities, my employment, my achievements, and the use of the “R” word. I got two standing ovations."
What’s been the hardest thing about moving away from home? "The hardest thing has been missing my entire family. I am the only child. My parents came to visit me this weekend. Just making the decision to move was very hard initially—and coming to Washington D.C. was hard too. I’m from Syracuse, New York."
What are your goals in your new role as Manager of Grassroots Advocacy? "I love being the manager. I am the newest member of NDSS, and I’m part of the policy team, along with my boss, Ashley. I will be speaking, and they have me do work in the office. They’ve opened my eyes to many opportunities for advocacy—and NDSS is really putting their money where their mouth is, and hiring people with Down syndrome. Having people with Down syndrome involved makes it all better—people cannot say no to us, Sam!"
How do you hope to help people with Down syndrome? "By giving them a voice. You have to have a voice to empower everybody out there that is differently abled so that they can speak up for themselves!"
Tell us about your most interesting experience so far on Capitol Hill. "A couple of months ago, we went to Capitol Hill and spoke to a staffer about joining our task force. The Congressional Task force allows us that are Differently Abled to promote legislative activities and public opportunities for those of us with Down syndrome. The next day, the staffer said yes!"
What are the initiatives that you are most excited about? "I am excited to talk about the #DSWORKS® program because we talk to different companies about hiring people with Down syndrome—maybe we will even be talking to people near you, Sam! I’m also excited about the campaign to end #LawSyndrome, because it’s not Down syndrome that’s holding us back, it’s the old laws."
Are there any positive changes you see coming soon for people with Down syndrome? "We always see positive changes coming. We want to keep that positive outlook on life—because when we put a positive spin we can turn even something ugly around."
If you could change anything for the betterment of the lives of people who are differently-abled, what would it be? "Well, first of all, I want to make sure everyone has a voice—and I want to make sure we all come together as one voice—so everyone should come to our Adult Summit and the Buddy Walk® on Washington April 9, 10, and 11, to see a whole new way that we can advocate for ourselves!"
What are your personal dreams for the future? "I’m hoping to get my own place and live independently. I have a roommate now. I’d also like to maybe have my own car so I can drive to work (Watch out, Ashley.), and eventually, I would like to have a family. Right now, I have a dog back home."
Where do you see yourself in ten years? "I hope to be working with NDSS for as long as I can!"
Social Studies is Hiba Qureshi’s favorite class at Lincoln Junior High in Naperville, where she’s a fully included seventh grader.
What does she like best? “Doing my homework,” she says, adding that she’s also especially enjoyed learning more about India, home to her maternal grandparents. What does she love most about India? “The dances,” says this young lady who loves joining in on the traditional dances at family weddings.
With an eight-year-old brother and two little sisters, including one who is just five months old, Hiba gets to help her mom out quite a bit by, “doing laundry, changing diapers, holding her, watching her.”
Here’s more of Sam’s interview with Hiba:
Favorite vacation memories? “Swimming in the outdoor pool.”
What are some of your favorite activities, outside of school? “Basketball, swinging and playing at the park, swimming, movie nights.”
Favorite movies and shows?
“Raven’s Home, Descendants and Descendants 2, Frozen, Boss Baby”
What are you most looking forward to?
“A sleepover with cousins.”
After a three-year struggle with school administrators in Glendale Heights, Hiba’s parents moved to Naperville so she could be included in the regular classroom.
These days, some of Hiba’s dreams are big: “to go to college,” and “to be a doctor.” And some are simple: “I want a dog,” she says.
“You have to have goals,” says Kelly Neville, 26, who started her own jewelry business, Special Sparkle, six years ago with her mom when they found it difficult to find the right fit for Kelly’s skills.
“I love what I do, and I love it more every day. I especially love shopping and buying the beads at shows with my mom,” says this entrepreneur, who was recently featured on Special Books by Special Kids.
What’s her goal? “I want to be a jewelry designer,” she says. While Kelly’s mom designed the jewelry at first, Kelly recently began getting her feet wet.
“I designed the Christmas doubles bracelet. They are the best ones I ever do because they are my inspiration. And Christmas is my favorite holiday of the year. I have my own tree I can set up, and it’s all about my family and friends.”
Besides jewelry design, Kelly is also a public speaker, with a message for others with Down syndrome. “If you want to follow your own dreams, speak up for yourself. You have to have goals. Speak up for what you want.”
Kelly was chosen to be the keynote speaker at a Ray Graham Training Center high school graduation by the students! “I love speaking. I share about what my life is like, and about having dreams. I got a big bouquet.”
She has also spoken at the Speak Up and Speak Out Conference, and the NADS Fashion Show. She also enjoyed the interview portion of the 2015 Miss Amazing Pageant, where she won first runner-up for Junior Miss.
Here’s the rest of Sam’s interview with Kelly:
What’s been your biggest challenge? "I don’t like heights at all. I usually have someone help me use the stairs—like when we go to concerts, like Bruno Mars or Taylor Swift.”
What are you most looking forward to? “I’m going to Washington D.C. for a [NDSS] leadership summit in October. A leader is a role model. I was born a leader.”
What are some of your happiest memories? “One was when I graduated from high school. It was during the summer. We went to all these beautiful parties. I had a graduation party at my house too, with all my friends, and some of my teachers came. Everybody was inside. We did a Wii bowling challenge in my basement. It was a great day.
“Then when I was 25, I went to Vegas with my mom and my Fab Five girls. (We do girl’s nights together a lot and now we have a Bunco group.) We went to see Michael Jackson in concert, and I loved the chandeliers in the hotel—of course—because they were so sparkly!
“I went to Camp Hope this summer. They have good food and wonderful friends. They also had a reptile petting zoo. I touched the lizards because I liked the color of their skin. One of the snakes kissed a guy on his ear!”
Any more dreams? "I’ve always wanted to be a painter. I’m very artistic and creative."
We hope every single one of your dreams come true, Kelly!
We asked Richard Hansen, 53, what makes Bitty & Beau’s Coffee so special. “Bitty and Beau are a brother and sister. Bitty always runs to me and says, ‘I love you, Uncle Richard.’ So, they are like family. Also, the customers make it special. Everybody brings happiness and joy into the shop. That’s why it’s so special,” Richard says.
We can’t help but think it also has everything to do with Richard and the entire team! They decided to pool their tips for the last two weeks to provide post-disaster relief for others with disabilities.
Together, they collected $3,634.59, and Bitty & Beau’s matched that amount, bringing the total gift to $7,269.18! Here’s the rest of Sam’s interview with Richard:
"I’ve been working at Bitty & Beau’s for one year. I was one of more than 50 people who applied. I work very hard. One of my goals is to be a manager, or assistant manager.
"I work here to pay my rent money. My mom and dad died, and so now it’s up to me.
"I’ve also applied for another job—stocking things at Porches Cafe.
"What do you do at Bitty & Beau’s? I do everything. I make sure Kelly (my manager) stays in line. I wipe down the tables, take out the trash, pump out coffee, make the coffee. I also call out the cards. (At Bitty & Beau’s, customers get a playing card when they order, so team members call out the name of the card when an order is complete.) I like calling out every single one.
"Right now, I’m also learning how to use the cash register—learning money skills so I can run the cash register better."
What did you do before? "I worked at UNC-W (University of North Carolina at Wilmington) for 10 years. I was the assistant manager, attending to the dining room area. I took out the garbage, cleaned the tables, and restocked the plastic silverware."
What makes you unique? "I love to iron. I would like to bring the whole box of long-sleeve shirts and t-shirts home to iron, and then bring them all back on hangers.
"I also like to go bowling with my girlfriend—she’s a waitress at the Greek restaurant, Olympia.
"Every Thursday I have a full-time job playing the harmonica with a pianist who just made a CD. On Thursdays, I play about 5 songs on my harmonica with her.
"I’ve been playing for about 22 years now. I had a friend up in Connecticut who taught me how to play—downstairs in his garage.
"If I could play harmonica with anyone, I would play with Reba McIntire.
We hope your dream comes true, Richard!
Bitty & Beau’s currently employs 40 people with intellectual or developmental disabilities. We think its mission—of creating paths for people with disabilities to become more valued, accepted, and included in every community—simply could not be finer.