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High expectations and PACER help teen realize her college dreams
“Where there’s a will, there’s a way,” is a good way to describe Marissa Leitzke’s attitude. The 17-year-old from Apple Valley, Minn., attends high school full time, volunteers for several organizations, runs track, and plans to attend college next year. Marissa was born with Usher’s Syndrome, is deaf, and has progressive vision loss. She uses American Sign Language, a video phone, and interpreters to help her communicate.
Despite facing obstacles, Marissa’s positive attitude, determination, and strong support system have helped her succeed. “I love learning new things and challenging myself,” said Marissa. “I want to prove to the people who say I can’t do things that I can!”
In addition to having a family that encourages her to reach her full potential, Marissa also relies on PACER Center for resources and support. Her mother Jennifer first brought Marissa to PACER when she was being bullied at school. After speaking with a PACER advocate, Marissa learned how to deal with the bullying and use other important self-advocacy skills. “Marissa was feeling pretty low when we came to PACER,” said Jennifer. “They taught her how to be a strong advocate for herself, which completely changed her life.”
Marissa channeled her renewed self-confidence into teaching others how to stop bullying. For the past two years, she has organized events at her school to celebrate Unity Day, which was started by PACER’s National Bullying Prevention Center and takes place in October during National Bullying Prevention Month. “After going through my own bullying experience, I wanted to show others that it’s not OK and that they can stop it,” said Marissa.
Active participation in her community is important to Marissa, and she has volunteered at her high school, church, and several non-profit organizations. In 2014, Marissa received the President's Volunteer Service Award for engaging in volunteer service and creating change in her community.
Marissa will graduate from high school this year, and she’s been accepted at the University of Minnesota Duluth, where she plans to pursue a degree in environmental education. Jennifer admits that she is nervous about Marissa moving away from home, but after touring the campus and speaking with disability resources staff, she is confident that Marissa will be successful in college. Their family has also used PACER resources to help with the transition process. “Marissa has worked hard to get where she is,” Jennifer said, “and I know she will go far in life.”
Marissa encourages other youth with disabilities to challenge themselves and to never give up on their dreams, whether it’s pursuing a job or going to college. “It’s important to push yourself and see how far you can go,” said Marissa. “Believe that you can do anything. You can!”
A Hairy Situation (with a happy ending)
As a child, Jessica Knoepfler was very introverted. She was uncomfortable in most social situations and went out of her way to avoid talking to people. It was only when Jessica persuaded her parents to buy and bring home their first dog, Abby, did her parents notice a change in their daughter. “Abby really brought Jessica out of her shell,” said Jessica’s father, Joel. “Soon everything was about dogs - Jessica spent much of her time with Abby, she did research on breeds and even presented a periodic chart of dogs to her classmates - something very out of character for Jess.” By the ninth grade, Jessica was already sure she wanted a career working with dogs.
Jessica struggles with short-term memory. She requires repetition with new concepts to store information into her long-term memory, so the path to a career in dog grooming was not an easy one. After high school, Jessica was hired by two big box corporations in the Twin Cities to go through their grooming school and eventually work for them. She was terminated from the first one just before the end of her 90 day probationary period. She worked almost three years at the second and participated in their groomer’s training but unfortunately was only assigned to bathe dogs and not given the opportunity to groom. Both of these companies expected their groomers to whip through eight dogs per day and Jess wasn’t fast enough. There was also considerable turnover in their management, which didn’t help her situation. The truth was, Jessica was capable of doing a great job - she just needed more time to learn.
Jessica did not give up on her dream, so the next step was to enroll in another grooming school. She trained at Rio Gran and only weeks after completing her training, she was hired by the owner of Just Paws in Lilydale. “Working for Brenda was the turning point for Jess,” said Jessica’s mother, Janet. “Brenda was patient and willing to mentor Jessica. She had suggestions on accommodations to help Jess through her learning period such as using a whiteboard to write instructions out for her daily cuts.” Jessica was happy and finally felt that she had found her place.
Two years after Jessica was hired, a co-worker purchased the salon from Brenda. This change was unfortunate because it wasn’t long after the purchase that the new owner stopped showing up to work, started missing appointments and barely communicated with the staff. Jessica took responsibility for the everyday running of the business. Along with grooming several dogs per day, Jessica began making the appointments, keeping up the shop, ordering supplies, and cleaning. While the situation started off as an incredibly stressful one for her, it was during this time that Jessica began to really shine. She always had a sense of responsibility and a great work ethic, but this situation forced her to break out of her shell in order to save the business.
In May of 2015, Jessica’s parents became official owners of Just Paws. “Jess has proven herself as responsible and committed, and we wanted to provide an opportunity for our daughter to continue to thrive.” Jessica and her parents recently hired a second groomer to help Jess out at the salon. “If her teachers saw her today, they wouldn’t believe it was her,” says Janet. “She has come so far!” Many times it’s about finding the right business or person to give you the opportunity you need to show your skill, passion and commitment. Just Paws gave her the opportunity to do what she had been dreaming of since the beginning of high school. “When she was given this chance to fulfill her grooming dream,” said Joel, “Jessica’s confidence grew in all facets of her life.
This article by Kelly Ann Merchant was first published in the June 2015 issue of One Step Ahead (page 5), the monthly newsletter of Kaposia Inc., a customized employment program based in Little Canada, MN.
By: Kelly Ann Merchant
Family, friends celebrate a special high school graduate
Beverly Ofstie will never forget the day her son Jesse walked across the stage at his high school graduation in Southern Minnesota. “I’m not a crier, but I shed plenty of tears that day,” said Beverly.
They were tears of joy – and for good reason. Jesse, who has Rubinstein-Taybi syndrome and is nonverbal, overcame many challenges on the way to graduation. When Jesse’s name was called, the auditorium erupted into applause and a standing ovation. “I could see the joy on Jesse’s face,” said Beverly. “He was so proud of himself and so excited to be up there with his friends.”
Though Jesse’s story has a happy ending, his experience with inclusion wasn’t always positive. Beverly faced countless hurdles in making sure Jesse was included with his typical peers in the classroom and recreational opportunities. “The school didn’t always understand the importance of inclusion,” said Beverly. “I had to educate them and show them how it could work.”
Beverly realized early on that her family needed extra support, so she reached out to PACER Center when Jesse was 3. She worked with PACER parent advocate Bonnie Jean Smith to create a plan to meet Jesse’s needs. Beverly attended PACER workshops and conferences and researched special education laws and services in the community. When mediation was needed to resolve issues with the school, Bonnie Jean was able to help. “PACER has been there for us for 15 years,” said Beverly. “They’ve given me the information and support I needed.”
The Ofsties’ tireless efforts paid off. Jesse blossomed in the inclusive school environment and made many friends. He was the first student with cognitive disabilities at his school to participate in the typical high school classroom and walk in the graduation ceremony. “The other kids motivated him to learn and provided him with important social development skills,” said Beverly.
This fall, Jesse will attend a transition program in Rochester, Minn., where he will continue to practice life and job skills. Beverly is confident that her son will be an asset to an employer or volunteer organization because of the skills he gained through inclusion. “Life is not a special education classroom,” said Beverly. “I knew that he would not be secluded in the real world, so it was important for him not to be secluded in the classroom, either.”
Beverly encourages other families who are facing barriers to inclusion to learn their rights, advocate for their child, and contact PACER for help. “Inclusion can work for any child,” she said. “Children with all types of disabilities will learn and grow when they spend time with their typical peers.”
Teen Finds His Voice Through Theater
Ely outside the State Theater with his Award from Hennepin Theatre Trust’s SpotLight Musical Theatre
My name is Ely Leuchovius Leslie, and I am an award-winning actor at my school. I’m a good person, my grades are fantastic, and I have a mountain of friends. And I, an Aspergian (a person with Asperger’s syndrome), have been called upon to perform for television, along with a group of other young actors, in front of 2,000 people. It has always been my dream to perform in front of so many people. But it wasn’t always this way.
When I was younger, I lived with my mother in Arkansas. I would lock myself in my room, never coming out to do anything but eat, before quickly retreating back. I spoke in a blank, monotone drone, which is rather typical for someone with Asperger’s. During recess, I’d simply stand motionless. I was the one weird kid who would never do anything and had no friends to play with. I hated everyone. I felt as though everyone hated me back. As a result, I was bullied profusely. Unable to handle the bullying, my mother home-schooled me.
Having Asperger’s wasn’t a very easy thing for the doctors in Arkansas to understand. They misdiagnosed me with attention deficit disorder (ADD), schizophrenia, and chronic depression, but in reality, I only had Asperger’s syndrome.
Since the doctors couldn’t treat me and I was taking more medicine than my brain could handle, I requested that I move to Minnesota and live with my father and stepmother. I felt I had to get out of that place. I was being doused for disorders I didn’t have and bullies I’d already left behind. Going to Minnesota was a chance to make a new start.
When I arrived in my new home, I was behaving like a child. All the ridicule from my schoolmates and unnecessary chemicals buzzing around in my head—combined with my Asperger’s—took away my opportunity to mature like everyone else. My stepmother would ask me to fold towels for her, to contribute to the maintenance of the household. I’d simply cry out loud, at the age of 14, and tell her that I didn’t know how. She taught me how, whether I wanted to learn or not.
They both taught me so many things, from how to hold a spoon correctly, how to do the dishes, how to put laundry in the machine, to where the detergent and fabric softeners went, and many other things. Those basic skills opened a pathway to learning more and more skills, which included the ability to converse with others. As an Aspergian, I had always been incredibly awkward around people. But in no time at all, my conversations with other people became more engaging and interactive. Was this the same kid who would stand and do absolutely nothing during recess?
In my sophomore year I decided to join an improv skills workshop offered by the Autism Society of Minnesota. A group of Autistics gathered weekly to learn to become more outgoing, have fun, and to participate in a group of neurotypicals as though we were neurotypicals.* My interest in acting suddenly metamorphosed into a passion. I could shout as loud as I wanted, I could be improvisational and come up with new ideas, new plays, new characters to act out, new emotions to roll with, and it all felt so natural.
This year, I tried out for a part in my high school’s spring musical, “Hairspray.” I was cast as Wilbur Turnblad, the father of the main character. He was the craziest, most energetic, and most perplexing out of all of them – an absolute perfect match for someone as idiosyncratic as me.
I made many new friends at theatre, which was a huge accomplishment for me. I was even invited to a party for the first time in my life!
When “Hairspray” closed, I learned I had been gifted with an Outstanding Actor in a Supporting Role Award. My first year in the Acting Guild, and I’d gotten an Outstanding Actor Award! I would be publicly televised along with other young actors recognized by the Hennepin Theatre Trust’s SpotLight Musical Theatre Program. I also earned a little trophy for being the “best newcomer” in the theatre! It was absolutely mind-blowing!
I started from dirt. Then, I became a star. The entirety of this world has that same potential. Even if people are at a point where they can’t fold a towel, that doesn’t mean that they can’t grow. Anyone can shine.
By: Ely Leuchovius Leslie
* PACER usually recommends "person first" language but we made an exception because it was Ely's preferred terminology.
Setting her path to an engineering degree
When Ann Motl signed up in 2003 for PACER Center's first EX.I.T.E (Exploring Interests in Technology and Engineering) Camp for middle school girls with disabilities, she had no idea that a few days of fun would change her life forever. Now 22 years old, Ann recently graduated from college with a Bachelor of Science degree in Mechanical Engineering.
“Before I went to EX.I.T.E Camp I knew that I really liked computers, and I didn't mind my math and science classes, but the camp taught me what an engineer actually does,” she says. “Seeing other people who were engineers – especially people with disabilities – really helped me decide that it was a great career path.”
The daughter of dairy farmers Mike Motl and Kim Harff, Ann graduated from Staples-Motley (Minn.) High School in 2008. She compiled a long list of honors and achievements along the way, and was awarded the Board of Governors Engineering Scholarship at the University of St. Thomas in St. Paul.
Following her college graduation in 2012, Ann completed a public policy and engineering internship in Washington, D.C., sponsored by the American Society of Mechanical Engineers. In the fall of 2012, she enrolled at the University of Minnesota Law School.
“I really like engineering, but I want to be a patent attorney so I can help engineers file their patent applications,” she says. “I want to be able to use my people skills, too, not just sit in front of a computer working with modeling software all day. I think it will be a really good fit for me.”
Success hasn't come easy for Ann. She has Charcot-Marie-Tooth disease (CMT), a neuromuscular disorder. She has very limited use of her limbs and requires a power wheelchair for mobility. Like all good engineers, however, Ann is a great problem solver and she has overcome numerous obstacles that stood between her and her rather lofty goals.
At St. Thomas, Ann lived in an accessible dorm room, utilized classroom note takers, hired personal care assistants, and employed various forms of assistive technology, including voice recognition software. She praises the university's disability services staff for working diligently to understand her requirements and meet her needs. They even helped Ann educate professors about her unique learning style so that she could have extra time to complete exams and assignments.
Of course there are difficult adjustments every college freshman must make – particularly when moving from a small high school to an urban campus – not to mention the academic challenges involved. During her first year in St. Paul, Ann often went home from physics class crying.
“It was a pretty steep learning curve,” she says. “I am from a really rural area and everything was new to me. It's crazy to think back about how much I had never experienced or didn't know. I guess I just waded through somehow.”
Over the next four years, no matter how high the barriers were, Ann never gave up, and she learned how to effectively advocate for herself. She credits PACER Center for providing the knowledge and resources that helped her secure the accommodations she needed to be successful. The results speak for themselves.
“I decided at the end of EX.I.T.E Camp that being an engineer would be great,” she says. “Now I have my engineering degree, but I can do much more than that. My goals just keep growing. Who knows where I'll end up?
Discovering his dreams and aspirations
Shortly after PACER opened its doors, Brian and Denise Walker moved to Minnesota. They brought their infant son Malcolm, frustrations with the East Coast medical community, and determination.
Malcolm was born with hydrocephalus, cerebral palsy, and developmental disabilities. Doctors told the Walkers that their son would never be able to hold up his head, never be able to ride a bicycle, and that his life expectancy was about five years. Medical experts recommended that Malcolm be placed in an institution and that the Walkers go on with their lives.
"Well, we rejected that," said Denise emphatically.
Soon after arriving in the Twin Cities, the Walkers contacted PACER. A long relationship ensued. PACER provided the Walker family with information and support throughout Malcolm’s childhood. Brian recalled that PACER offered help for individualized education program (IEP) meetings. He remembers that PACER staff asked what dreams and aspirations he and Denise had for Malcolm—and PACER asked Malcolm what he wanted. The Walkers also supported PACER; Brian served on the board.
Now in his early 20s, Malcolm works at Wal-Mart, is a talented cook, likes movies and sports, and is active in his church. He can ride a bicycle—and he recently bought a boat. "I don’t know how we could have done it without PACER," said Brian.
Assistive technology helps level the playing field
For many people, constantly changing technology can be a major source of irritation, but for 19-year-old Sam Graves, the latest innovations have been a home run. Sam, who has cerebral palsy, is a self-professed Minnesota Twins fan, co-author of the baseball blog “Two Men On,” and a freshman at Augsburg College in Minneapolis. He is thriving at school, at home, and in the community thanks, in part, to new assistive technology.“I am always looking for the latest and coolest piece of technology,” he says. “When I’m looking for new technology I usually go online to find out about it or I read about it in the news.”
Sam was 3 years old when his parents, Kathy and Hazen Graves, first brought their son to PACER’s Simon Technology Center (STC). That visit was the beginning of a fruitful relationship with PACER that has provided Sam access to new technology as it becomes available. It also led the family to become enthusiastic PACER volunteers.
“For a kid like Sam, technology has really leveled the playing field,” says Kathy. “The iPad, for example, has made such a huge difference in his life. He also has his own website, he writes a blog, and he had a summer job editing copy via technology. He is a very good writer.”
“Sam doesn’t just use technology, he embraces it,” says Jonathan Campbell, an assistive technology specialist with the STC who has provided consultations for Sam at PACER. “When he first showed me how he uses his iPad, the conversation wasn’t about what the iPad could do for him, it was about how cool the iPad was. That’s when I knew we would get along very well!”
Ashlee sees opportunities instead of obstacles
Ashlee Kephart is the founder and executive director of a successful nonprofit with a chapter in Liberia, Africa; she’s a winner of a 2008 national award for “Most Caring American”; and was selected as one of 20 U.S. torchbearers for the 2010 Winter Olympics. Those are impressive accomplishments for any adult. For an 18-year-old from Brooklyn Center, Minn., with the extra challenge of having dyslexia, they’re outstanding.
“I was very little when I found out about my disability, and I felt pretty bad,” Ashlee says. Then one day in sixth grade she saw a poster at school of one of her favorite historic figures. The man was Albert Einstein, and the poster said, “Even Einstein had trouble in math classes. He had dyslexia. What’s your reason?”
“At that moment I knew I wasn’t alone and that some very intelligent people also had dyslexia,” Ashlee says. “From that time on, I was able to accept it and worked hard to compensate for it so it would not become a barrier for the things I wanted to do.”
Ashlee’s resolve was matched by her mother’s commitment to help her succeed. Top grades weren’t a problem when Ashlee had accommodations such as more time for tests and writing assignments. “PACER was very instrumental in helping Ashlee get accommodations through a 504 Plan,” says her mom, Sharon Kephart. “I’ve received so much support through PACER over the years.”
Ashlee’s determination to reach her goals paid off. When she was 16, she expanded her longtime volunteer activities by founding Kids for a Better World, Inc ., a nonprofit dedicated to youth volunteerism. Ashlee promotes the empowerment of youth through her organization, which coordinates community initiatives and spreads the volunteer spirit internationally by connecting youth all over the world.
Through her hard work and dedication, she has raised more than $100,000 for charity, recycled more than 10,000 cans, distributed more than 15,000 Caring Bags of personal-care products to people who are homeless, 65,000 shoes to underprivileged families, 10,000 books to children in hospitals and orphanages, and 4,000 backpacks to victims of disasters. Ashlee also established a chapter of Kids for a Better World in Liberia in 2008, which has helped more than 417 children through its child development center.
In 2008, her volunteer efforts were recognized as she and four other young adults were honored at the Frederick Douglass Museum & Hall of Fame for Caring Americans in Washington, D.C. as a “Most Caring American.”
Her hard work in school was rewarded, too, with top grades and more than 20 college scholarships. Ashlee plans to earn a degree in clinical psychology with a focus in forensics.
In 2010, she donned an Olympic running suit and carried the 3.5-pound Olympic torch through Calgary, Canada, as it made its way to Vancouver for the winter games. She was one of just 10 U.S. teens selected as a torchbearer because of her “remarkable dedication in encouraging others and making a positive difference in so many lives,” says Celeste Bottorff of Coca-Cola North America, which is a sponsor of the Olympic Torch Relay.
“I learned from my mother and her life examples that it’s all in how you look at things,” Ashlee says. “When faced with adversities, I choose to see opportunities instead of obstacles. So many people have been able to overcome a disability. Having a disability doesn’t mean you can’t do what others can do. It means you might have to do it a different way or it may take you longer, but there’s always a way to do what you want to do.”
Perseverance leads to rewards
Noah Melhorn, 21, is a wildland firefighter battling blazes most recently in Arizona. But for most of his life, he fought a different type of battle with the help of his mother, Terri Fierstine. Diagnosed with dyslexia and learning disabilities when he was in fourth grade, Noah struggled to read.
“He wasn’t catching on, and I kept wondering when he would be able to read a paragraph,” says Terri, who now lives in Walker, Minn. “Both of us were frustrated.”
When special education services during the school year didn’t help him progress, Terri sought additional tutoring help in the summer. She was eventually able to secure payment for the service through the school district her son attended at that time.
“Through perseverance, many meetings with teachers, numerous IEPs, phone calls, e-mails, and summer tutoring, Noah caught up in high school,” Terri says.
In fact, Noah was on the honor roll throughout high school and received numerous scholarships when he graduated in 2006. After graduating from a wildland firefighting program at Itasca Community College in Grand Rapids, Minn., Noah found work fighting fires in Arizona and loves the challenging job, says Terri, a mother of four.
Through the toughest school years, Terri and Noah just kept trying. “Noah always kept everything positive,” she says. “He taught me a lot. He taught me to take breaks. When things were too hard, we would shut the book and come back to it later.” Though they took breaks, Terri and Noah didn’t let discouragement keep them from pressing forward.
“During challenging times, don’t give up,” Terri advises. “Instead, take a deep breath and realize that you are your child’s strongest advocate. Persevere for your children’s special needs in education. The rewards are a lifetime of happiness in seeing your child’s dreams become a reality and knowing you did everything you could for them!”
Fulfilling her potential with assistive technology
Elizabeth Watson, who has Asperger’s syndrome, was struggling in school because of her writing abilities. Through a PACER Simon Technology Center consultation, she found help through an assistive device that made all the difference. She now uses “The Writer,” a portable note taker that allows her to write legibly and that reads out loud what she has written.
Through using “The Writer,” Elizabeth’s reading vocabulary score dramatically improved from 68 to 98 percent and her language expression score soared from 62 to 90 percent. Best of all, she is now excited about writing and about her future.
“I hope that our story will encourage parents who are actively seeking technology to help their children fulfill their potential,” says Luisa Watson, Elizabeth’s mother. “Thank you PACER!”
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