I would like to say that this is a wonderful picture of me and my sister Marie DeBernardis that came to see me over Thanksgiving of last year. I am including an recent article that this one women did on me and she is from the Rural Institute -in Missoula, Mt. Transition and Employment Projects is to expand the vision of what is possible for youth and young adults with developmental disabilities to learn, live, work and play in their communities:

At 34 years old, Amy is a whirlwind of activity. She drives her own car, lives in an apartment, works, volunteers, attends college classes, studies piano and taekwondo, cares for her dog, and advocates on behalf of people with disabilities (or “people with special abilities,” as Amy prefers to say). Amy also has a phenomenal long-term memory and can remember the football scores for all of her favorite teams, as well as the birthdays of all her family members and friends. She is a true Emerging Leader.

Amy’s dad was in the Marine Corps and the family moved a lot, so she attended ten different schools as she was growing up. According to Amy’s mom, her best school year was grade three, when she was in an inclusive classroom with a teacher who had a Master of Special Education degree and experience working with children with autism. Amy had real friends for the first time in her life. At age 12, Amy was diagnosed with Fragile X Syndrome, a genetic condition that affects over ten of Amy’s relatives (including her late maternal grandmother) and that is the reason for her autistic-like symptoms. She graduated at age 21 from Bozeman High School and chose to stay in the Bozeman area (her mom and dad live in Gallatin Gateway).

Amy’s parents bought a house for her to live in after graduation. She went through 15 different roommates before her folks decided to convert the upstairs into a separate apartment. Now Amy lives on the ground floor with her border collie/lab mix, Bo, and there are two renters upstairs. Amy reports that this has made life much easier! She qualifies for Section 8 Rental Assistance, so that program pays part of the rent and Amy pays the rest to her landlord…her dad.  She also pays for Internet service and for part of the satellite expense. Utilities are included in the rent.

Because she is so active in her community, it made sense for Amy to obtain her driver’s license. Not long after she finished high school, Amy’s parents taught her how to drive a standard (stick-shift) transmission and helped her use a computer program to study for the written exam. She passed the test, purchased a reliable vehicle from one of her father’s friends, and started driving herself around Bozeman. Amy’s dad also gave her a GPS device to help her navigate to unfamiliar places. (Sometimes her mom or dad will go with her the first time she visits somewhere new.)  When she was 27 years old, Amy had a grand mal seizure and was diagnosed with epilepsy. Before she could legally drive again, she had to be evaluated by a neurologist to ensure her anti-seizure medication levels were stable. Amy found it frustrating to wait for her license to be restored, but it eventually was and now she’s back on the road. Amy cautions other young people that it is expensive to have a car…plan ahead and be prepared to spend money if you want your own vehicle!

To earn the money she needs to meet her expenses, Amy has held a variety of jobs over the years. For example, she handed out food samples at Costco for five years and also helped provide personal care for a 30-year-old man. Currently, Amy works eight hours per week cleaning exercise equipment at The Ridge Athletic Club. She started this position as a short-term unpaid work experience and then was hired as an employee. Her paychecks are direct deposited into her bank account. Amy has also been a Mary Kay Beauty Consultant for the last ten years, though she considers this more of a hobby than a business because she has very few customers.

Community participation is important to Amy. She volunteers at the Heart of the Valley Animal Shelter for one hour every Thursday. Her primary duties include walking and helping to socialize the dogs. Each year she volunteers at the Sweet Pea Festival, a giant community celebration. She assists with the children’s activities, interacting with the kids, helping with their art activities and making sure they have the supplies they need. Amy appreciates the guidance and instruction she receives from the volunteer coordinator…it helps her do the best job she possibly can for the children.

Amy is committed to life-long learning. She taught herself sign language so she could communicate with a friend who has a hearing impairment. Later, she took sign language classes at the adult education center and then at Montana State University (MSU). She has also audited several other classes at MSU, including psychology, human development, and public communication.

Since age 21 or so, Amy has taken piano lessons from Jessica Olson, a teacher “who has a heart of gold” and who is “wonderful, insightful and positive.” She lifts weights with Eagle Mount. She also studies taekwondo and is working to earn her black belt. She speaks as a Global Messenger for Special Olympics and has competed in Special Olympics for 16 years – her events include basketball, downhill skiing, track and field, swimming, and her specialties, the 400- and 800-meter walks. Amy excels in abstract art. She draws a design with a #2 pencil, outlines it with black marker, and then fills it in with colored markers. One of her pieces recently sold for $100 at a fundraising auction. And Amy is part of the Bozeman Newcomer’s Group. Members meet the first Thursday of the month from September through May for speakers, luncheons, and making social connections.

Even with all her other activities, Amy still finds time to be a vocal advocate for the rights of people with disabilities and for increased funding into Fragile X Syndrome research. She regularly writes letters to the editor of the Bozeman Daily Chronicle. She has given informative talks about Fragile X Syndrome to local groups and at state, national and international conferences.  On Advocacy Day in 2004, Amy and her mom lobbied Congress to pass a bill funding Fragile X research. She also watches for “alerts” in the Fragile X Digest and then emails Congress about those bills that are important to her.

In her free time, Amy talks with her sister on Skype. (Twice she has flown on her own to “hot, sticky Reno, Nevada” to visit her sister and spend time at the amusement and water parks.) Amy has gmail and YouTube accounts and her own Facebook page.  She warns other social networking users to “play your cards right. Make sure you don’t say anything inappropriate.” Amy likes to post videos and is currently working on one of Bo fetching a ball. Amy has both a land line and a cell phone for when she wants to call and chat with friends or family members.

When asked about the supports that help her lead such a busy life, Amy immediately gives credit to her family. She said her parents have always been there for her, and that her sister pushes her. Amy’s mom taught her important living skills like planning and preparing meals when she was young. Amy also has a Helena Industries case manager who helps coordinate services and a Family Outreach case worker who sets up home visits, arranges recreational activities, and assists Amy to prepare for her annual meeting. Amy receives funding for Supported Living and Section 8 Rental Assistance. She is also an SSI (Supplemental Security Income) and Social Security beneficiary…those benefits are direct-deposited into her bank account.

Amy has many words of wisdom to share with other young people and their families. She suggests looking at challenges as “bumps in the road” that everyone faces. “I went through 15 roommates, but I’m grateful that I did. There is a light at the end of the tunnel.” She warns not to use disability as an excuse and not to prejudge people. “Work and have interests and a desire to work. Develop your interests and resources. Have your service providers help. Go for it if you have an interest!” Amy advocates nurturing a desire to live on your own because “your parents won’t always be around.” She awards a “gold star for mom and dad because they set up a Special Needs Trust for me for when they pass on.”

Always looking ahead, Amy has already prepared her own “bucket list” and given a copy to her case manager. Her goals include going to college (receiving credit for courses instead of auditing them), earning her taekwondo black belt, and teaching people with special abilities self-defense. It seems almost certain she will achieve these goals and many, many more.

For additional information about Amy and/or Fragile X Syndrome, visit:

http://www.montana.edu/cpa/news/nwview.php?article=2217

http://www.bhndpg.org/moa/newsletters/08springBHNnews.pdf

(allow 2 minutes to download and look for article, “Fragile X-Our Story” on page 3)