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Contents:
Augie & Luke -- A Story of Friendship by David Oliver
Relin Just last year, Augie Nieto’s life appeared nearly perfect. He lived in an elegant oceanside home in California with his wife Lynne, his high school sweetheart. He built a 550 million dollar company called Life Fitness that sold equipment to gyms in 54 countries. And Augie was his business’s best advertisement. Handsome and supremely fit at 47, he was a model of what his machines could do. During a workout in March 2005, Augie noticed he was struggling and thought, “getting old stinks.” Then the next morning, he couldn’t make his hand spread shaving cream on his face. Doctors at the Mayo Clinic delivered nightmarish news: Augie had amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease. Soon, he learned, he should expect to lose the ability to feed himself, speak and even breathe without assistance. ALS, which causes progressive muscular paralysis, kills most patients within five years. “I was terrified.” I realized I had a choice - to crawl under a rock and die or get out there and help people while I was still here. Before the disease,
Augie had competed in 21 marathons. Now he is running a different sort
of race. He has launched a nationwide campaign called Augie’s Quest
committed to raising 12 million dollars for Muscular Dystrophy
Association researchers working on a cure for ALS. And, at the MDA board
meeting, he found an unlikely friendship that helped change his outlook
on life. Augie met Luke Christie, MDA’s Goodwill Ambassador. “This
little guy had the biggest heart in the room. His zest for life despite
the hand he’s been dealt is incredible. I’ve been a mentor, helping
people build their muscles. But living with a disease was a new
experience for me; I saw an opportunity to be mentored by Luke.” The day
after they met, Augie e-mailed Luke. “Meeting you was the highlight of
my trip. You have the courage of a lion.” They’ve been raising each
other’s spirits ever since. This past Labor Day, they appeared At 13, Luke, from tiny Due West, SC, already has endured more pain than most people do in their lifetime. But there’s no hint of that in his sunny disposition. As a toddler, Luke was diagnosed with spinal muscular atrophy (SMA) and lacks the ability to use his lower body. “My disease progresses slower than Augie’s but as I get older, it gets worse. There are lots of things I have to learn to lose.” What Luke won’t relinquish is the chance to be a regular teenager. He acts in community theater, loves to swim and devours novels. He’s an honor student at Due West Dixie High School and his friends see him as quite ordinary. But dozens of times a year, Luke’s life is anything but ordinary. He flies cross-country to rally support for MDA, and considers it his mission to move people to action through his words. Augie says, “This little guy, whose legs aren’t strong enough to take a step, has shown me how strong one can truly be. Luke has taught me I can choose to mourn what I lose or celebrate what I can still do. The person I used to be never would have had the privilege of getting to know Luke. I used to look down on anyone who wasn’t fit. That’s not even on my radar anymore. Now I’m taking lessons from Luke about what’s essential in life. He’s teaching me how to be a whole person.” Augie has accomplished much but the legacy he longs for most is leading the race for a cure for ALS. Milestones have been reached this year by MDA-funded researchers. Gene therapy trials to possibly reverse muscle loss have begun. New lifesaving drugs have been approved and stem cell research with rats has been promising. And this Labor Day, thanks to Augie and Luke, Jerry Lewis’ annual telethon raised a record 61 million dollars. Earlier this year, Lekotek staff members attended the annual ATIA (Assistive Technology Industry Association’s) National Meeting held in Orlando. I attended a workshop on universal design presented by special education teachers from the University of Buffalo’s Play Project. Universal design is an approach to making products accessible for users of all abilities. An example of universal design is the use of large visual displays on calculators, remote controls, signs and in printed material, making visual cues more accessible for everyone. For children, toys that are universally designed help everyone participate. Lekotek leaders consider universal design when selecting and/or adapting toys, software and input devices. The Let’s Play Project has developed the following tool to assess toys for components of universal design. If the answers to the following Universal Design assessment tool are true it is likely the toy can be enjoyed by all children. The toy is appealing and invites the child to play. The toy
has multiple colors, textures, dimensions, scents and/or sounds. The
toy’s combination of colors, sounds, textures and movements are
balanced. Lekotek leaders follow the child’s lead and choose toys that are open ended helping children learn through play. Helpful Suggestions for Parents and Professionals According to The National Education Association on Special Education “Public schools across the country today serve more than six million youngsters with a wide array of disabilities.” Professionals choose their careers and receive training at colleges and universities. But parents do not choose to parent a child with special needs. Therefore it is important that professionals help to answer their questions with respect for parents as integral members of the child’s educational team. Suggestions for Professionals
Suggestions for Parents
(Adapted from Karen Holland’s article in the August 2006 issue of Exceptional Parent.)
This past August, Helene conducted a play session in the hospital while
Emily underwent brain surgery at Scottish Rite (CHOA). Emily was a
little tired, but she was happy to see Helene and enjoyed playing on the
laptop she brought. The surgery, three separate procedures spread across
ten long days, was the latest in a long line of failed treatment options
to control Emily’s seizures. Emily has had seizures since she was
10 months old, which have But to define Emily by her diagnosis (or “label”) is to completely misrepresent a beautiful child. She loves her younger brother. She loves books. She loves to swing and swim. Emily has a remarkable way of lighting up any room and endearing herself to everyone she meets. If you’re sitting in the waiting room with nothing in your hands, Emily will bring you a book so that you may read to her. And while she has her share of challenges, you would never know it by looking at her—seldom will you find her without a smile on her face. She is a tough little girl who seems invincible—or at least unstoppable. Her seizures have actually gotten worse since the surgery, and she broke her collar bone two weeks ago after a seizure-related fall. After a late night trip to the emergency room, she was up early the next morning laughing, clapping, and jumping up and down. Life is not all smiles at the King house (ask Mom about bathroom time, bed time and brushing hair), but we are so grateful for all the blessings that God has given us. This is a long season that we are in, and we are looking forward to continuing our collaboration with Lekotek throughout the upcoming years. Lekotek is delighted to welcome administrative assistant, Maggie Parry, along with Lekotek leaders, Maria Canaba and Jackelyn Lamb. Maggie Parry grew up in Atlanta and graduated from Agnes Scott College. She has two children, Jack and Kelly and was introduced to Lekotek through Jack. For several years, Maggie donated hours of her time as a tireless volunteer. Originally from California, Maria holds a degree in recreation therapy and most recently worked at Warm Springs. She will conduct play sessions at Cliff Valley and Gwinnett sites. Maria is fluent in Spanish and will strengthen Lekotek’s outreach to Spanish speaking families. Jackelyn Lamb is certified in special education and taught in Gwinnett and Coweta counties. She and her husband have a little boy, Preston, who is four months old. Jackelyn is the Lekotek leader at the new southside Lekotek located at the Joseph Sams School. Lekotek has been fortunate to have had a talented and dedicated staff since its inception in 1984. Previous staff members have strengthened Lekotek with their legacies. We look forward to all that Maggie, Maria and Jackelyn will add as Lekotek continues to make a difference for additional children with disabilities and families.
This colorful air-powered ball drop looks like a train with a whistle and engages children of various ages and abilities. Children can easily press the large red plunger using their fingers or whole hand, than watch the balls circle through the toy and pop out the top. Visual tracking and eye-hand coordination come into play as children try to catch each ball and place them back on track. The balls are small and easy to grasp. Fun sound effects and eight songs help keep the child’s attention. It’s a fun toy for the whole family and available through Playskool and at local stores.
Consider donating computers and laptops to Lekotek. These systems are outfitted with appropriate staff written software and adapted input devices and loaned to families. Consider donating your old car. Contact our office and we will make the arrangements for you. It’s one less nuisance for you, with proceeds of the car sale benefiting Lekotek. You’ll receive a tax-deductible receipt for all donated items. Lekotek’s annual silent auction will be held November 6th, 7th and 8th at the Athletic Club NE located at 85 and North Druid Hills Road. We need volunteers for two hour shifts during the three day period. Please contact the office at (404) 633-3430 if you can help.
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Georgia, Inc.
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“We
don’t need any more toys!” With these immortal words, our first
introduction to Lekotek was quickly forgotten. Fast forward four years
and Lekotek has been a great addition to our lives. Our daughter, Emily,
has attended two summer camps with her best friend Madeline, numerous
compuplay sessions, music therapy and of course play sessions with her
brother David, who looks forward to Lekotek as much as Emily. We love
that Lekotek focuses not just on Emily, but on the entire family. And we
really appreciate Helene’s advice and insight regarding school
placement, adaptive technology, and computer software.
