Sierra Lode

Teens transition with help from woman with cerebral palsy

by JIM TRACY

Sierra Lode’s personal story is about depression and mental health therapy, but it’s also about the success she’s achieved with love and support from people who value her contributions

Sierra Blue Lode describes herself as nonverbal. That doesn’t mean she’s not talkative. And when it comes to helping teens with disabilities make the transition to adult life, Sierra, who is quadriplegic and has severe cerebral palsy, is never at a loss for words.

“I present on various topics affecting youth with disabilities who are transitioning into the adult world,” she told Apostrophe in an email interview. “I have been there, and I have a lot of experience.”

That’s an understatement.

Shortly after Sierra was born, a virus attacked her central nervous system and damaged her brain.

“So the messages that my brain sends to my muscles get mixed up or don’t get there at all,” she said. “The part of my brain that thinks and learns is perfectly fine. I have to use other methods to communicate, like using my communication computer to talk and to write.”

A bright-eyed blonde with an alert gaze, Sierra started to put those communication tools to work when she was young but hit her stride in high school while preparing a presentation on cerebral palsy.

“I was asked by my health teacher if I would give my talk to all of the sophomore health classes,” she said. “I welcomed the chance to explain what CP is and dispel any myths about the disability. And I was somewhat motivated to get a good grade.”

The presentation got her started on her life’s mission.

“To my surprise, I was well received by the classes,” she said. “I felt like I had credible information to pass on to my peers, and I was inspired to develop other topics involving the aspects of having a severe disability.”

Sierra developed her own IEP goals for her senior year to include doing two presentations at educational conferences. The school district provided support staff and travel expenses. She happily accomplished her goals.

Motivating people

She’s out of school now and wants to put her skills to work as a motivational speaker and actually get paid to do presentations.

On her journey to adulthood, Sierra has been helped to by a number of people who love her and value her contributions, starting with her parents.

“My mom and dad have been, and continue to be my rock and foundation!” she said

The daughter of Fred and Carol Lode, Sierra was born in Cut Bank, Mont., in September 1983.

When she was 3, a forward-thinking pre-school teacher insisted on having a computer in the classroom for her.

“It was there that I learned ‘cause and effect’ on software called Catch the Cow,” she said. “By using a cheek switch, I trapped the cow in a rectangle on the screen at the appropriate time by hitting my switch. I cannot control a joystick or switch with any part of my body, but my head has always been my reliable resource for intentional use.”

She used a “Light Talker” for several years by switch-scanning pictures that represented things she wanted to say with synthesized speech.

“Once I learned how to spell, I moved on to an Apple laptop with ‘Speaking Dynamically’ software that had word prediction that I still operated with a cheek switch.”

Today she uses eye-gaze technology — a system that consists of a computer with several cameras that watch her eyes direct their focus to an on-screen keyboard.

“This technology is extremely sophisticated, and though miraculous, my cerebral palsy is unpredictable in my success using it,” she said.

“Sometimes my motor skills are right-on, and I can crank out lots of text, and sometimes it is laborious, fatiguing and frustrating. This technology did get me through college, taking me six years to obtain an associate of arts degree.”

‘A dear friend’

Sierra singled out another mentor.

“Her name is Diane,” she said. “Diane was my one-on-one paraprofessional from the second grade all the way through two semesters of college. She is remarkable and is a special gift to me to this day although she lives over 1,500 miles away now. Not only is she my dear friend and supporter, she continues to be a gift to all, especially to those individuals who have disabilities.”

Sierra graduated from Capital High School in Helena in 2002 and completed an associate of arts degree with an emphasis on communication studies from the University of Montana Missoula College of Technology in 2012.

Because of her disabilities, she felt the need to prove to herself.

“I felt that I had a better chance to do something meaningful with my life if I could prove to others that I had what it takes to be well educated,” she said.

She also wants to be a example for others with disabilities.

“I plan to be a more pro-active role model to those who have similar disabilities,” she said.

To that end, she started a business as a motivational speaker, calling the venture “Speaking Out of the Box.”

Getting personal

In her most poignant presentation she discusses her personal story about mental health therapy and depression.

“I’ve had serious depression probably since middle school years,” said Sierra, who is 30. “Since I was not willing to share my secret, I did not seek help until after high school.”

She took “the biggest risk of my life” by asking a female psychologist if she would take her on as a client after she did an assessment required as part of a vocational rehabilitation application.

“She seemed like a person with whom I could place my trust,” Sierra said. “Since then, I have been a client of a psychiatrist who goes above and beyond what you would expect a doctor would do in this day and time – he comes to my house because it is so much easier for me than going to his office.”

Between sessions, the psychiatrist encourages her to send him emails on how medications he prescribed are affecting her and how her moods are.

“He’s the best,” Sierra said.

In the part of her slide show presentation she calls the “Missing Therapy,” she talks about depression.

The presentation is geared toward young people with disabilities, but Sierra has noticed that parents, teachers and other professionals in her audiences are keenly interested in the information she has to offer.

Sierra Lode at home

A bright-eyed blonde with an alert gaze, Sierra started to put her communication skills to work when she was young but hit her stride in high school while preparing a presentation on cerebral palsy.

“When you can ‘come out’ with your own experience with depression,” she said, “it gives others the courage to do so also.”

It should go without saying, but she emphasizes that she is the same inside as any other person her age.

“I just don’t look the same on the outside,” she said. “You can actually see my disabilities. They are mostly physical, but I am intelligent, have a good sense of humor and I like meeting new people and I don’t like being alone. I like to travel and visit large cities like Chicago and Washington D.C., and I would love to go to New York City in the near future.

In her free time Sierra enjoys books, movies — especially musicals — and the theater.

Romantic comedies

“I like romantic comedies as well as the classics like Little Women and Pride and Prejudice” she said. “Les Miserables is my new favorite.”

She has never ever gotten tired of mac’n cheese and her dad’s homemade pancakes, she said, “are to die for.”

Like other young adults her age, Sierra lives in her own home, a tidy two-bedroom affair with a deck and spacious backyard in a quiet neighborhood in Helena. She shares her home with another young woman, Beth, whom she describes as “the best housemate and friend ever!”

Sierra bought the home last year with the help of AWARE Inc., a service provider in Montana, and NeighborWorks, which creates opportunities for lower-income people to live in affordable homes.

“There is much involved in buying your own home, and I have relied on my parents’ knowledge about this huge step,” she said.

To qualify for government financing, she took classes, including a 16-hour “First-Time Homebuyers” course covering all of the topics involved with buying a home for the first time, such as qualifying for a mortgage, homeowner’s insurance, all aspects of the “buy-sell” legal document, property inspections, real estate agencies and Section 8 Home Choice Vouchers.

Dad and Mom (Fred and Carol Lode) are my “rock and foundation,” says Sierra Lode, who bought her own home in 2012 with her parents’ help. Photo by Kenton Rowe

Dad and Mom (Fred and Carol Lode) are my “rock and foundation,” says Sierra Lode, who bought her own home in 2012 with her parents’ help. Photo by Kenton Rowe

“The Section 8 component was really involved,” Sierra said. “I was also required to take a 16-hour class on money management to qualify for some additional funds that were put towards my mortgage. Both the class and the additional mortgage money were simply invaluable.”

She also had to save a certain amount of money to be matched by another program.

“I have been extremely fortunate to have these various government programs that made it possible for me to be a happy homeowner,” she said.

Youth Leadership Forum

As if buying and keeping up a home and operating a fledgling business didn’t keep her busy enough, she is also active in the Montana Youth Leadership Forum and has been since 2000, when she was just 16.

“Attending the forum changed my life drastically,” she said. “I found my worth and my potential as a young person with severe disabilities through this forum that I actively promoted for the next 10 years as well as being on the “Speakers Bureau.”

As for role models, she admires just about everyone who has a disability. Among the people who have had the greatest influence on her, she includes: June Hermanson, the founder of the Montana Youth Leadership Forum; Michael Beers, a peer advocate specialist for youth with disabilities “as well as a very funny stand-up comedian”; John Feught, a special education teacher who has quadriplegia and is also non-verbal (Feught is the founder of “Authentic Voices of America,” a camp at the University of Wisconsin-Madison for young people who are non-speaking and use technology to communicate; and Geri Jewell, an actress who has cerebral palsy.

‘I admire them all’

“She, too, is a stand-up comedian and professional motivational speaker,” Sierra said. “There are a lot more individuals who are so influential in my life. I admire them all, and I am so grateful for knowing them.”

Sierra is “a very active” member of the Montana Independent Living Project Peer Advocates Committee and the University of Montana Rural Institute on Disabilities Advisory Council.

“Our focus is on transitioning youth with disabilities into the adult world,” she said.

Sierra’s own transition is an excellent example to follow.

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