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.
Family friends for over 10 years, Sara Davis and Connor Nolan started dating about a year and a half ago. When asked what they like to do together, the list was long and varied: “Miniature golfing, bowling, family videos, eating dinner, Wii, playing cards, Jenga, Lincoln logs, puzzles, playing basketball, singing Karaoke, swimming . . . ”
“We are on the same swim team,” says Sara. “So we also have swim meets together,” adds Connor.
What do you most appreciate about one another? Connor: “Sara makes me laugh. She makes me cute. She likes doing stuff with me like listening to music, doing Kidz Bop, singing, and playing basketball.” Sara appreciates Connor because, “He is special, hilarious, and funny. He is so funny he makes me cry. And he is kind. When I get out of the water at swim practice, he puts my towel around me.”
What qualities are most important to look for in a girlfriend or boyfriend? Connor: “Look for someone you want to marry.” Sara: “Someone who likes to help people. Connor likes to help.”
Their families have established a few ground rules. Bedrooms are off-limits. “We are allowed one hello kiss, and one good-bye kiss,” says Sara. “And we listen to our moms,” adds Connor.
When Sara won Junior Teen Queen in the 2016 Miss Amazing Pageant, Connor was part of her talent competition. “We sang ‘Love Is an Open Door’ from Frozen,” says Sara.
Congrats to Connor Nolan, who will be a sophomore this fall at Downers Grove South High School, where he advanced from Concert Band to playing percussion in the Symphonic Band! He’ll also be performing with South’s Marching Mustangs in over seven marching band competitions, and at the halftime shows at football games.
To hear some of Connor's FAVORITE tunes by Green Day, White Stripes, Led Zeppelin, and the Beatles, don't miss the 2017 Chicagoland Buddy Walk on October 8th. Here’s more from Connor:
“I was in the Concert Band at school this year. I’ve played drums for 9 years. I’m also in a rock band with my twin brother, Sean. It’s called Chrome 47. That’s my favorite.”
What are some of your favorite songs or bands to play? “'Warning’ by Green Day, 'Seven Nation Army' by White Stripes, and the Beatles”
“My favorite class in school is gym, because I like to play basketball. I play Special Olympics Hoops 99. We got a silver medal in March.
I also like Miss Caffrey’s classroom, learning about the states and geography, and working on projects with my friends.
What are your goals for the future?
“I want to play basketball. When I go to college, I want to study social studies and music.”
For more from Connor, don't miss our upcoming interview about dating with Connor and his girlfriend, Sara Davis, who says, “My hero is Connor. He makes good choices, and he helps my mother.”
Sara Davis knows a thing or two about horses. She’s been riding since she was six, and this year, she’s helping care for Dublin, her sister Jessie’s horse. In addition to riding him, Sara explains, “I brush him, give him treats, lead him in and out of the stall, and pick dirt out of his hooves.”
Riding and caring for horses is only the tip of the iceberg for this busy girl, who’s headed to Hinsdale South next year, and just got some exciting news. “The coach called my mom and told her I made the freshman swimming team for Hinsdale South! He called yesterday!”
Here’s the rest of Sara’s interview:
“I like swimming best. My favorite strokes are backstroke and freestyle. I had a swim meet yesterday, and I broke my own record in the backstroke. My dad took me to Dairy Queen after.”
Happiest memory? “One was when I was a little kid. When my sister Jessie and I were little, we played dress up, and then we had a sleepover together at our house. The other was when I went parasailing with my dad. We were on vacation in South Carolina. I screamed so loud! I loved it!”
An inclusion student through eighth grade, Sara says of middle school, “I liked doing cross country, track, and cheer.” When she wasn’t at school, Sara kept busy doing gymnastics, swimming, and Cheer Alliance Wildcats, and volunteering with Celebrate Differences. She’s excited to be moving on to high school. “I’m going to get to see my friend, Cece. She’s really great and nice.”
Favorite subjects? “I like math, and I love science and art.”
Goals for the future? “I want to make YouTube videos, babysit, write, and have a yoga studio with my sister, Kylea. I also want to work in Hinsdale at Sweet Allie’s Bakery. It’s gluten free, and I have Celiac. I want to work with the customers.”
Anything else people should know? “I love my brother and sisters.”
The first person with Down syndrome in her Florida county to graduate from high school with a standard diploma, Faith Beurrier’s proudest moments included performing a solo with her school choir! “I sang, ‘I Make a Difference,’” she says, adding, “I like being on stage.” Here’s the rest of Sam’s interview with Faith:
Best and worst things about high school? “I like drama. I was in The Wizard of Oz, and Romeo and Juliet, and Beauty and the Beast, and The Sound of Music. My favorite was The Sound of the Music. I was a nun. The worst was English 4. It was hard. We read Beowolf.”
In spite of the difficulty, Faith says her favorite classes, in addition to drama, were inclusion classes like English 4 and math. “I got A’s in Algebra and Geometry,” she says with notable pride.
Summer plans? “I love Legoland, so I want to go to Legoland. I’m also going to dance camp during the day. I love it. We do hip hop, jazz, modern, and ballet, and musical theater. I have my favorite teacher—Mr. Adam—just like from the Addams Family. That’s my favorite movie.
“I also signed up to volunteer with the humane society. They have cats in their stores, and they want people to socialize them.”
Happiest memory? “I was an Oompa Loompa in Willy Wonka JR and the Chocolate Factory with a children’s theatre called Star Struck.”
Future plans? “I’m going to do Project Search training next year.” [Project Search is a nationwide program that provides real-life work experience to help youth with disabilities make successful transitions from school to adult life.] Although one of Faith’s long-term dreams has been to be a musical theater actress, she says, “My dream job would be to work in a movie theater. I would take tickets and make the popcorn.”
Ariana Siannas spent Memorial Day Weekend camping and “Jeeping” with her family. “We got really wet with muddy water. It was like a volcano exploded. I like going Jeeping,” she says, although she adds quickly that home is her very favorite place to be. “I miss home when we go camping."
This seventh grader has a best friend who also happens to have Down syndrome. “We go swimming or horseback riding or play Barbies,” says Ariana, who adds with pride, “I taught Sara to play pool.”
Both girls have been part of the Miss Amazing pageant for several years, where Ariana got to showcase the ribbon routine she learned in Special Olympics gymnastics. “It was so funny. They played the wrong music, so we had to start again with new music.”
Happiest moments? “Gymnastics competitions. When we went to state and stayed in the hotel.”
What’s most important in life? “Our entire family. Going to Grandma and Grandpa’s house, and to see Ya-Ya and Papou.”
Future plans? "I’m going to be a doctor or a nurse. I’m going to go to college. I’m going to get married and have a dog."
“I love doing math, and hanging out with my friends Austin and Vince," says Daniella Caracci, who is just finishing her freshman year at Nequa Valley High School.
She recently suffered a tremendous loss. “My grandpa passed away. He liked to garden. He taught me about flowers. Sunflowers are my favorite.”
Here's the rest of Sam’s interview with Daniella:
“My favorite place to be is Walt Disney World. We went there a long time ago for my birthday. I was scared when I got on the airplane, but my mom and dad helped me. I loved meeting all the characters, and I liked the tea cup ride and the roller coaster. I also love when it gets dark, and the castle glows, and the fireworks are so loud.
“I’m happiest when I go to Iowa to visit my big brother, Nick. He’s a freshman this year at University of Iowa.”
Favorite activities? “I like Best Buddies, Five-star Tennis, Special Olympics bowling and track, and play practice. We did Shrek, and I was proud because I remembered my lines.”
Goals for the future? “I’m going to camp in August for a couple of weeks! I’ve never been before.”
Austin Underwood, 39, went to college right out of high school, and studied to be a prep chef. He’s lived on his own ever since graduation, but since jobs in the restaurant business were hard to find, he worked at a local grocery store for 13 years before asking a local restaurateur for a job. And in the last two years, it’s incredibly exciting to hear how his dreams have begun to unfold!
Here’s more of Sam’s interview with the proud owner of Austin’s Underdawgs:
Best and worst things about owning your own business? “I like making money, and I like the people who work for me. My mom works for me. She does a good job. I also have four different people working for me. I have a friend, Daniel (he has Down syndrome too), who works for me along with his sister.”
The worst thing is the clean up. You have to clean off the grill and everything, and the make it nice for the next party.”
Of all the dogs you sell, what’s your favorite? “My favorite is the Straw Dog. It has raspberry chipotle BBQ sauce with bacon bits, and crispy fried onion straws, on a Vienna beef hot dog.”
Is there anyone who you see as a role model? “I love to cook, and my role model is my boss named David Campisi. I work for him four nights a week, at his own restaurant. I’m a host by the door. I can walk there, it’s four or five blocks away. At night, Uber takes me home.” Austin also now has an item on the menu: “We call it Austin’s Famous Banana Pudding! My grandma made this pudding herself, and then she taught me.” After Austin made it for all the employees at the restaurant, they decided it needed to be on the menu, and people now ask for it at the door!
Austin attended Eastern New Mexico University in Roswell right out of high school, studying to be a prep chef. What did you learn in college that has helped you? “I learned cooking and stir-frying. I was the stir-fry chef at the college cafeteria. I learned how to put in what people want in it—shrimp, rice. I enjoyed doing that.”
Would you recommend college to others? “Yes. They can live in the dorm by themselves, they can learn how to go to the grocery store, and buy their own groceries.”
What do you like to do in your free time? “I like to play tennis, and go to the movies. I also like to go bowling, or go workout, and I like to ride my bicycle. I like to hang out with my parents at their house and have dinner. That’s what I like the most. Sometimes they call me and I walk over for dinner.”
Where’s your favorite place to be? “I like to go the beach, and I like going on cruises. I’ve been on four Disney cruises. I like all the food, the shows, and movies. It’s nice they have a schedule so you can tell what time everything starts and when it’s over.”
What are you most looking forward to? “We might do something with Tim Harris, so he might go with me to Lubbock—he’s a lot of fun and a great person.”
What are your goals for the future? “I like cooking hot dogs because it makes me feel good. I like working in my new RV. I want to expand my business.”
What advice do you have for others with Down syndrome? “I want people with Down syndrome to be like me and have their own business and their own place—to learn to be independent. That’s what I want for them . . . and also to listen to their mothers and fathers. My advice is for people to learn how to make money, cook on their own, do laundry, and clean their houses.”
This year Austin and Jan plan to turn Austin’s Underdawg’s into a franchise that will give back—by providing many more people with disabilities the opportunity to own their own hot dog businesses, and by donating a portion of the Underdawg’s proceeds directly toward starting a vocational program for people with intellectual disabilities on the well-situated property (by 3 major colleges and universities), which Jan inherited from her family.
Bridget Shannon is a fourth grader at St. Raphael Catholic School in Naperville, where she’s been with the same class of children since kindergarten. Bridget's thankful for her homeroom teacher, Mrs. Bartelt, “because she pushes me to learn.”
Lady Bird Johnson once said, “Children are likely to live up to what you believe of them.” During National Teacher Appreciation Week, we’re especially thankful for all the teachers who believe in and nurture the great potential inside every child.
Here’s more of Sam’s interview with Bridget:
Favorite activities? “I like art and music at school. I also like sports—track and basketball. Basketball is my favorite, because I play on a team and we won our game, and I scored.”
Favorite place to be and why? “Forever Yogurt, and at any park. I play tag, swing, slide, climb, jump, and always make friends.”
Proudest moment? “Making my first communion. I took classes and learned to pray, and I loved playing on the swings in my big white dress.”
Someone you admire? “Katy Dumais, because she actually plays with me. She plays school with me, and sings karaoke, and dances, and shoots hoops. Our families go out to dinner together sometimes, too.”
Goals for the future? “I want to learn to drive a car, and I want to be a waitress someday at Traverso’s (an Italian restaurant).”
If you could change anything about the world, what would it be? “I would get to see everyone. Everyone would live close by, and no one would move away.”
Garrett Anderson, 28, learned to drive in high school. His mom, Sharon, first had his capability evaluated at Marianjoy Rehabilitation Hospital, and he did his behind-the-wheel instruction through Marianjoy as well.
Here’s more of Sam's interview with Garrett:
When did you learn to drive? “I learned when I was a sophomore in high school. Mom taught me. I love driving, because for example if my parents get old, then I will help drive them.” [He is already helping out at times, when his parents have needed another driver. For the most part, Garrett doesn’t drive on expressways. He says, “People are impatient with me.”]
Garrett attended Eastern New Mexico University Roswell for 15 months, and later graduated with a certificate in early childhood education from Harper College in 2011. Although he went away to school at a tumultuous time for the family, and went through some very difficult times while away from home, he and his mom say he learned valuable lessons in money management, self-care, navigating bus systems and airports, and using discernment in developing friendships.
Would you recommend college to others with Down syndrome? “Yes, I would recommend college to people with Down syndrome because I want people to be included. Sometimes they want to pursue a career. I want them to advocate for themselves because they have a voice and they need to be heard.”
Where are you working now? “I work for two jobs. They are both paying jobs. I work at a movie theater, Regal Cinema in Lake Zurich. I am only the greeter. I take the tickets and tell people which theater they are going to be in, and where it is. Then I say, ‘Thank you and enjoy your show.’
“Second, I have my passion job. I love working with children. I work at Bright Horizons in Deer Park. It’s a daycare. I give teachers their bathroom breaks, and I am a sign language instructor. When I was really young, I couldn’t talk, so I had to use sign language.” [Because he was interested in early childhood education, he and his mom took American Sign Language classes when he was in high school.]
Where are you performing tonight? “I’m in a Jazz Cabaret. I’ll be singing, ‘Ain’t That a Kick In the Head,’ and improvising a dance somewhat. I’m also going to be speaking about the fact that I come from a theatrical family and watched everyone else participate. We love theatre. I wanted to be on stage. Now I usually do two shows a year. Being in theatre has changed, ‘I can’t’ to ‘Let’s try.’
“Out of all the shows, my favorite was Fiddler on the Roof. It was my first time being a lead. I was Tevye.”
Besides theater productions, what do you like to do in your free time? “I hang out with my girlfriend. We go on dates—bowling, miniature golfing, we go out to eat (my favorite thing to do), or go to Great America (also my favorite thing). I love upside-down roller coasters!
“My anniversary with Ela is in May. We’ve been dating almost three years. We are planning for our future. I would like to marry her. She is a perfect match for me.”
As he sat with the rest of the Homecoming Court at his high school pep rally, Josh Sylvie remembers keeping his fingers crossed while waiting for the announcement of the names of the Homecoming King and Queen. When his name was called, he says, “I was really excited and really happy.” Of all the events that memorable week, he especially loved “all the dancing” and “the Disney theme.” Here's the rest of our interview with Josh:
If you could change anything in the world, what would it be? "I would stop people from bullying. In my senior year, I got bullied. I was upset. The boy apologized. He has grown up now."
Who are your heroes? "My teachers: Mrs. Bamford, Mrs. Anderson, and Miss Hammer. They are my heroes because they teach students to become adults."
What does Down syndrome mean to you? "I like being Down syndrome. It makes me special. We have a fashion show every year. It’s my 12th year being in the fashion show [for the National Association for Down Syndrome]. I get to wear fancy clothes, and invite my whole family to come."
What are you up to now? "I graduated from Riverside Brookfield High School in 2015. Now I’m in transition. I’m learning about budgeting. We also cook food in transition.
I work at Culvers. I clean chairs and tables, check the condiment bars, and deliver the food to the customers inside and outside. Sometimes I get to see my friends when they come to Culvers. I love that a lot. I also work two days a week at the community center at North Riverside Village. I clean the rugs and the mats on the walls. I don’t like the cleaning, but I do like to vacuum."
What are you learning? "I learn about what my job is, about being on time, and about having a good attitude."
What would you like people to know about you? "My coworkers love me. I do my best. I always like to get work done."
What’s the most important thing in life? "The most important thing is having all my friends in my life—and my cousins, grandparents, aunts and uncles, and my sister."
What are your favorite activities? "I play Special Olympics basketball and track and field. I won gold at state in 2013 in the softball throw! They gave me a plaque at my high school, and my Best Buddy [Spencer Purcell] announced me. They put my picture up in the hall."
What are your plans and dreams for the future? "In my future, I will be working at Culvers and I will be working out. I will be getting in shape at the YMCA in LaGrange. I also want to be in my family band. Right now I’m the manager of the family band."
Miles Evans has won numerous awards for his photography, and has presented his work at shows. He also sells his framed photos and photocards. For Down Syndrome Awareness month this year, proceeds from his sales went to benefit the Adult Down Syndrome Center at Advocate Lutheran General Hospital and the National Association for Down Syndrome.
How did your photography business get its start? "My grandma Judy had the idea. My favorite class is art. I'm taking photography now. I take pictures of nature, and sometimes birds. I like to go to the Morton Arboretum. I have lots of pictures. My favorite is the 'Strength' bench from the Morton Arboretum. I like 'Change' too.
"My aunt is an artist. We go to Chicago to take pictures. We go to the beach, the greenhouse, the Lincoln Park Zoo, lots of places.
"I sent my pictures to the NADS [National Association of Down Syndrome]. They are hanging in the office now [in Park Ridge, Illinois]. I sent them the 'Strength' picture, and 'Love.'”
Favorite activities? "I like to listen to rock-n-roll. Two of my favorite bands are the Beatles and ZZ Top. I like Best Buddies [a non-profit program devoted to providing opportunities for friendship, employment and leadership development for people with intellectual and developmental disabilities].
"I also like hanging out with my friends—going to breakfast, dinner, and brunch—and hanging out with my family.
"I go to Camp Chi in the Wisconsin Dells. I am staff-in-training there. We do swimming, water parks, crafts, outside cooking, photography, horseback riding, and we celebrate Shabbat."
Tell us about how you met Dusty Hill from ZZ Top. "I was going to go to see ZZ Top, but Dusty got hurt, so they had to cancel. I was worried about him, so I wrote to him. I wished him well. I got invited to come to his concert at Ravinia. I got to meet him. He’s a nice guy. He has a really long beard all the way to his tummy. He also sent me a poster for Christmas."
Who’s your hero? "My Dad, because he’s a nice guy. He’s got a job at ComEd. I’ve got a job, too. I work at The Red Apple on Schmale. I bus tables and I get tips."
If you could change anything in the world, what would it be? "I would move to England. My mom, dad, and brother have been there. I would go to the Beatles store, and to see the Harry Potter [exhibit] and Downton Abbey. I like their music, too."
What are the accomplishments of which you are most proud? "I’m on the track team and I do varsity cheer at my high school. I walk to school by myself. It takes 15 minutes.
"I smile at my mom all the time."
“Being a good friend is being nice, and caring about your friends. I’m really good at making friends, and I’m really good at bringing people together.
“My friends and I do FaceTime, Facebook, and Snapchat, and we go down state [for Special Olympics]. We also do Best Buddies [a non-profit program devoted to providing opportunities for friendship, employment and leadership development for people with intellectual and developmental disabilities], where we play games and go places like the Brookfield Zoo.
“I’ve done the talent show at my school for three years. The first year, I played the piano. The second year, I played the guitar. Last year, I was one of Blues Brothers, and I sang 'Everybody Needs Somebody to Love.' This year, I have a big idea! It’s going to be a comedy. I’m going to do jokes and elaborate pranks.
"Last Friday, we played a prank on my teacher. She was sick, but she wasn’t at home, so we all wore gloves and health masks to her class.
“I was also part of the ensemble for Fiddler on the Roof at my school this year. I got to dance. I love the entire cast, and I also loved when all the seniors got together.
“I’m really good at everything I do. At home, I like to play guitar every day and play on my iPad. I also like dancing (doing the Nae Nae) and rapping. I want to be a D.J.”
What’s the accomplishment of which you are most proud? “My confirmation at my temple. And when I did my Bar Mitzvah, they asked me to lead the service in Hebrew. Then we had a big party afterward.”
Did you always want to be a firefighter? “Yes. I like how firemen save people’s lives.”
Tell us about your typical day at the firehouse. “It’s good and I love it. I come here and clean, and we stand by. I come five or six days a week.”
What are your favorite parts of the job? “Training and stand by.”
What makes you happiest? “Sweeping and mopping and getting the cleaning done. And when people make me laugh, and just being with my family at home and my family at the fire station.”
Who are your heroes? “Matt Horn and Shaun Lance, because they are my buddies.”
[Matt is a lieutenant with the fire department in Sandoval, Illinois, and Shaun is an assistant chief. Matt says, “Jason meets all the requirements I have to meet. He’s restricted on the cadet program. He can’t make the first entry into a fire, but when the danger has been mitigated, he’ll bring drinking water and tools to the other firemen. He helps us in a lot of different ways. The doctor gave him a physical, and signed off on him joining the program, and he does every training I do. In 2016, he responded to 60 calls.”]
What has been your most memorable experience so far? “My Aunt Nancy’s house caught on fire. Everybody was all right. I went after they got done, and cleaned up and put away the hoses. She was happy I was there.”
What are your dreams for the future? “After I get done with the cadet program, I want to get my tan fire gear. But that takes a long time.”
“Freshman year at my high school, I started taking a baking class and I really enjoyed it,” said 26-year-old Collette Divitto, describing the beginnings of her passion for baking.
“High school was not easy for me. I struggled a lot with friends. I got left out because of my disability.
“I went down to college—to the ClemsonLIFE program. Being in college was fun. I had really good friends down there, and had amazing experiences. My friends and I did a lot of activities.
“Probably the biggest thing I learned in college was independence . . . because look at me now. I live on my own—in my own apartment with a roommate—that makes me really happy. . . . My favorite things to do in my spare time are cooking, baking, playing games into the night, and doing fun activities.”
After college, Collette moved to Boston with her mom, where they thought there would be more job opportunities for Collette. But instead, she found people weren’t hiring.
“I want to give you all of my feelings—I was heartbroken. I would cry. I was really frustrated, sad, mad, angry—I had all of those emotions. Trying to find a paying job is a difficult thing a lot of times for all of us who have a disability.”
Baking soon went from her “fun hobby” to a job when she and her mom and sister worked together to start Collettey’s Cookies, and to sell Collette’s signature Chocolate Chip Cinnamon cookie.
“My mom and Liz have always been here for me, and we are such an amazing team. My favorite thing about my cookie company—is thinking about hiring more people with disabilities!"
Any advice for others with disabilities? “I would probably say for them to not give up on their dreams, and to focus on their abilities, not their disabilities.”
Supporting the employment of people with disabilities has never been tastier! To order Collette’s Chocolate Chip Cinnamon cookies: http://www.colletteys.com/home.html
“My best day in my life is being with my husband.
“Every Saturday we go shopping and get the meals for the week. We take turns paying. We enjoy cooking and just being together, or going out on a date. Sometimes we cook here to save money.
“When he asked me to marry him, he turned the lights down and got the dinner ready. He wanted me to try on a dress. And then he bended his knee down, and I said, ‘What are you doing?’
“Then he made a speech. He said, ‘I really want you to be my wife, and I want to spend all my life with you.’
“I was happy-crying and saying, ‘Yes! Yes! I love you.’
“We got married on June 27, 2015. I will never forget my wedding day, and especially the dance.
“We live in a townhouse with two bedrooms now. We have a dog named Gracie. Sometimes she’s bad and sometimes she’s good. She listens to my husband more. But actually she takes turns not listening. We do share the dog. If she has accidents, some days I have to clean it up. We take turns.
“I’m teaching now. I teach at Loveland School in the first grade. I give the kids some worksheets. They read to me. I help them with their reading and spelling. I sound words out. I work with them one-on-one.
“My favorite part of the job is being with the kids, just being there and being happy every day. The kids love me and I love them.
“I work two days a week at the school. Wednesday through Friday I work in the athletic department at the [Southern Kentucky] University. I work with the athletic director and I meet lots of people. I help him with staff meetings, and during home basketball games. I also deliver mail and put things together in binders and folders.
“I went to Southern Kentucky for four years. I studied early childhood education.
“My favorite place to be is to be here with my husband. We met when we played soccer together. We dated about 10 years. Now we’re married.
“My advice to others about living independently is to just go for it. It feels good to be on your own. Here’s the key for you: Never say goodbye to your parents if you want to live on your own. That would be too sad for me. My parents live only 10 minutes away. Ryan’s parents live 5 minutes away.
“My dream for the future is to be a teacher’s aide. I just want to teach the kids. That’s all I want to do—and to be happy and be healthy.”