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Lekotek Families The stories below are from our lekotalk newsletter. Read on and "meet" some of our present and past families and learn about what Lekotek means to them. What Lekotek Means to Our Family by Kelly Ogden On a hot summer’s
day almost 22 months ago, we welcomed our beautiful son David into the
world. We knew his presence would be life changing for us, we just
didn’t know how much. After all, my husband and I had been together
since college, it was just the two of us—nine and a half years to be
exact before David came into our lives. A few hours after David’s
delivery, the on call pediatrician came into our room and delivered the
news that shook our world. He suspected David had Trisomy 21, better
known as Down syndrome. We were shocked and saddened. What would
have ordinarily been a joyous day turned to a somber one, full of
worries and questions. Some of the doctors frightened us with a long
litany of all the challenges David might face. Thankfully, a select few
at the hospital provided some rays of hope. “He’s healthy and beautiful,
get him home, treat him like any other baby, he will do great, just you
see.” And so that is what we did.
When David was 14
months old, our occupational therapist, Erin, suggested we look into
something she described as a play and toy lending library called
Lekotek. She had been a Lekotek “leader” in years past, and thought
David would enjoy the play sessions and toys, so we signed up and
arranged a time to visit. Frankly, I wondered if Lekotek would be
another form of therapy for David. However, I quickly realized it
wasn’t. On our first visit, we were greeted
at the door with a warm smile from our Lekotek Leader, Ms. Helene. We
followed her into a cheerful playroom where she had a basketful of
thoughtfully chosen toys and two computers with appropriate software. He
had a blast exploring everything, and to my surprise took to the
computer touch screen and mouse like a fish does to water. The session
was fun, creative and intuitive for both David and me. Flash forward to
today. We look forward to our play sessions every month. We go on a
Friday, and it is a wonderful way to start our weekend. I have as much
fun as David. We both leave in a great mood and always with a large bag
of toys to explore and enjoy until our next visit. What I love most is
that Lekotek appreciates David for the marvelous individual he
is—celebrating and fostering his strengths and curiosities in a very
loving and natural way. David knows his letters and colors, can sight
read a handful of words and loves to play on the computer. These are all
things Ms. Helene and Lekotek have encouraged and facilitated through
play. We do have our
challenges from time to time, but we are so proud of David, and we know
Lekotek is as well. Too often parents encounter specialists who make
assumptions on what children with special needs are capable of doing.
Lekotek truly embraces and encourages the child for the child. There are
no limitations when we walk through that door. Our Little Boy and What Lekotek Means
to our Family
By
Brenda Ali On March 11th 2005 the “honeymoon period “of my pregnancy ended and I
was put on bed rest for the duration. My delivery date was not until
July 2005. Little did we know that our son would meet the world on his
time frame. So, on April 2, 2005 Hanif Ali was born. He was born at 24
weeks and 2 days gestation. He weighed 1.46 lbs. Who knew a baby could
be born so small! The doctors did a great job of terrifying me. They
discussed all of the possible outcomes a child so small could have.
Outcomes that may include: blindness, deafness, inability to walk and
learning issues. The doctors also mentioned a myriad of medical terms
that often apply to micro preemies such as: NICU, BPD, PDA, ADHD, NG,
Autism, CP, ROP, IVH, failure to thrive and developmental delay.
Every month without fail, Peggy met with us in the Northside and
Scottish Rite NICU’s bringing not only toys and resources, but a
magnificent personality and genuine kindness I will never forget. Peggy
helped me understand that through “play” and touch a child could have
fun and be taught a great many things. Peggy visited my son for a
grueling nine month period while he was hospitalized. She played,
trained, supported and encouraged our entire family, not just Hanif. And while our son has experienced developmental delays, he has
achieved a number of miraculous milestones. We thank and acknowledge
Lekotek and Peggy for many of his accomplishments - reaching, tracking,
and manipulating objects. These skills and more were learned through the
use of toys and adapted devices. Hanif is now crawling, walking, eating
by mouth and talking. Peggy’s facilitation and encouragement using an
array of extraordinary Lekotek toys helped to make these successes
possible. Lekotek has been a Godsend to Hanif and our family. It is proof that
something good can come out of any situation, no matter how daunting. My
husband and I will always be grateful to “Aunt Peggy” and Lekotek.
Meet the Seidls -- by John Seidl "You be Woody
and I'll be Buzz." I've been every character in Toy Story at one time or another. Being fortunate to have a child with
a vivid and active imagination has made this possible. James, who
happens to have cerebral palsy, is a typical five year old. He is bright
and energetic with an imagination that drives his play and laughter. And
sometimes even results in extra stretching exercises as we pretend to
lift off to the stars. James has a busy
schedule that includes school and six structured therapy sessions each
week. Lekotek is a welcome break and the toys and computer games
selected by his Lekotek leader, Courtney, provide our family with hours
of fun. With mobility challenges and James' genuine interest in
technology, the computer environment creates opportunities for
recreation and learning. As an added Lekotek bonus, I have the pleasure
of serving on the Lekotek board of directors. I know "up close and
personal" that the staff is talented and dedicated and the
organization well managed and fiscally sound. Our family life is hectic,
but blessed to have a very special child be a part of it. His mom and I
can think of nothing we'd rather do on this Earth than be with James to
"Infinity and Beyond".
The Parry's Hi! My name is Jack Parry and I have Tuberous Sclerosis. "TS", in my case, causes seizures, autism and severe developmental delay. I started coming to Lekotek when I was almost two years old and I love it! Peggy is my Lekotek leader and over the years has taught me how to use a touch screen, a trackball and a mouse. My favorite software is Little Critter Living Books and Peggy is so nice, she lets me hit the same hot spots on each page over and over again even after my mom says "Okay, it's time to do something else."Now that I'm nine I go to Computer Club and eat pizza with the big kids. My whole family has a part to play at Lekotek. My big sister, Kelly volunteers as a summer camp peer counselor. Even while she's helping other kids she keeps her eye on me and makes sure I'm okay. My mom loves Lekotek so much she works there planning the golf tournament and silent auction. My dad is on the Board (whatever that is) and goes to meetings. My parents really appreciate the staff's encouragement, knowledge and wealth of resources. They all help to take good care of me. In my spare time (when I'm not at Lekotek) I go to school and therapies. My favorite activities are swimming and horseback riding. I love orange foods: Cheez-its, Cheetos, pizza, cheese and especially McDonald's French Fries. At home I love to jump on my trampoline and go to the park to swing. I know that no matter how old I get I will always be a Lekotek kid!
Our beautiful daughter, Avery, was born on July 8, 2000. We were in Atlanta, when we received the phone call from St. Louis that my sister had delivered our baby girl. Unable to have children, my sister offered to be a surrogate mom and carry Avery as she did our four year old son, Ross. We weren’t expecting the call as the scheduled C-section delivery was still two weeks away. With all the miracles that made it possible to have our own biological child, we ruled out amniocentesis. And when Avery was born with Trisomy 21 (Down syndrome), we weren’t prepared. I remember the shock, fear and nonstop crying. I also remember the moment I realized that Avery and we, her parents, were exactly who and where we needed to be. And with that came acceptance and peace. In addition to Down syndrome, Avery was diagnosed with VSD (Ventricular Septal Defect), a hole in her heart. She underwent open heart surgery at five months and has blossomed since. During one of our follow up visits to the cardiologist, I met a mom whose family participated in Lekotek. She told me that Lekotek was the only thing that “saved her sanity”. I really had no idea what she meant until I visited Lekotek and met Helene, a burst of energy and light. Helene selects toys to match Avery’s developmental level and to facilitate the development of new skills, all while having fun. In fact it’s so much fun, the kids hate to leave. Ross’ Lekotek motto is “no pitchin a fit” when it’s time to go. Originally from IL and PA, Atlanta has been home for fifteen years. Sherri is a software programmer and Todd is in telecommunications sales. Recently, Lekotek was featured in John Wieland Homes’ annual report as a grant recipient. We were asked for a quote from a family. Sherri said, “After six days of therapy every week, Lekotek is a breath of fresh air.”
Michael and I have two sons—Tyler, age 13, and Drew, age 10. I cannot
remember when our lives did not include Lekotek as we were fortunate to
learn about Lekotek when Tyler was 3. Learning has never come easy for
Tyler. When he was young and lacked fine motor skills and verbal
abilities, Lekotek provided wonderful new ways to learn. Every session,
every day and every communication with Lekotek has been helpful and
positive. While Tyler came into the world needing lots of special love
and time, Drew came barreling into the world, big and strong and quick
to learn. Lekotek helped Drew develop computer skills. But more
importantly, Lekotek helped him learn that all children are different
making it easier for him to understand his brother’s special needs. Drew
continues to be very disappointed if, for some reason, he cannot come to
one of our monthly sessions with Helene. In addition to monthly play sessions, Computer Club has been a huge
confidence booster for Tyler. It gives him a special outing each month.
Tyler insisted on walking into Lekotek on his own to attend the first
Club. This was a huge milestone for all of us. Selfishly, over the years
I have enjoyed talking with the staff. Their wealth of knowledge and
resources make it possible for Tyler to be successful. It does take a
village to raise a child, especially a child with special needs. We are
grateful to have Lekotek as part of our “village”.
When asked to write about our family, I was at first reluctant. My husband, Jon, asked if it was because I felt that our four-year-old daughter, Parr, was not a special needs child. I believe I was hesitant because, although Parr gets physical therapy, occupational therapy, speech therapy, has a communication device to help her talk and uses a walker, she is simply a child that needs some extra help. So, I was unsure as to what I could write about. However, after much reflection, I decided the basis of my hesitancy was exactly why and what I should write: that Parr is, in most ways, a typical child. I sometimes forget that Parr has special needs, particularly when we are at home. Equally important, our therapists, teachers and the wonderful team at Lekotek see and treat Parr the same as our family does. She is first and foremost a child; a smart child with a sense of adventure and a clever sense of humor. Parr was born almost three months premature because of a hemorrhage in the placenta. The doctor noted that, although her tiny heart was pumping strongly, there was not much blood for it to pump. Six weeks later she came home and we believed everything was fine. Seven months later the effects of the lack of oxygen became more discernible. Parr could not roll over and could not sit up. She continues to experience some developmental delays. And along the way, we continue to have incredible people in our lives teaching and encouraging Parr and, most importantly, building her self-esteem. She has become quite a feisty, loving, and confident little girl. She loves her baby dolls and takes very good care of them. She is learning to swim. She is becoming an excellent horse woman, with maybe a little too much confidence on her horse, Callie. She has an undying devotion to both Winnie the Pooh and Clifford the Big Red Dog. We owe her wonderful personality, in part, to the people at Lekotek, who have helped Parr and our entire family in many ways. On every occasion that I have mentioned or merely wondered aloud about a different type of therapy or assistive program in their presence, Kristen Davis, our Lekotek leader, and Helene Prokesch instantly respond with helpful advice, solutions and information at their fingertips. I have personally never experienced such a willingness and ability to help as I have at Lekotek. Moreover, as far as Parr is concerned, Lekotek is simply synonymous with fun. She attends Leko-Music and is part of Lekotek’s preschool inclusion project. She enjoys Saturday morning Happy Tail visits, where she frequently asks to take home Tripod, the three-legged dog. During play sessions, Kristen presents opportunities to experience diverse computer programs and equipment. Most recently, Parr mastered and became independent using the joystick as the standard mouse was difficult. She attends other Lekotek events meeting other children who use walkers and she thinks that is really neat. So, although initially hesitant, I am glad I am able to share our experiences and share a little about one of the most wonderful people I know, my daughter; a little girl whose special needs are not what makes her special. I am also happy to have the opportunity to praise and thank our friends at Lekotek for helping Parr and so many other children be just who they are: children.
The Ford's "I Want to Walkie Walkie" Having just returned from our first family vacation to the beach, "I Want to Walkie Walkie" quickly became the theme of the week. For most children, running up and down the beach in the wide-open space is a dream come true. We could hear squeals of delight as Anna, Sydney and Harrison tried to catch the surf as it came in and out. They became particularly adept at scattering in different directions as we tried to catch up with them. After all, Anna and Sydney just turned 3 and Harrison is only 21 months old. As she has throughout her eventful 3 years, Noelle found her own way to keep up with her siblings. Noelle has cerebral palsy and cannot yet walk independently although she continues to make amazing progress. Since her walker and crutches did not work well on the sand, Noelle took matters into her own hands and insisted on walking up and down the beach holding our hands. Every day when we were on the beach, Noelle wanted to run and play with her brother and sisters. She would say, "I want to walkie/walkie with hands." She must have walked at least a mile every day holding on to Mommy, Daddy or Aunt Stephanie or Uncle Sid's hands. She may not have been quite as fast as her siblings, but she certainly enjoyed the beach as much as they did! Our hope for the next beach vacation is that Noelle will be saying "walkie walkie all by myself!" Unbeknownst to us, Noelle and Helene actually met in the hospital and all four children look forward to play sessions with Helene and Peggy. We are grateful to Lekotek for providing opportunities for the whole family to play and learn together.
Fifteen years ago Ben and Tonya met at Georgia Tech. After ten years of marriage, Ben and Tonya became the proud parents of William Thomas Mason born January 17, 2003. Ten months later William was diagnosed with SMA, spinal muscular atrophy. Like new parents thrust into the world of disabilities, they tirelessly learned all they could, meeting with doctors and therapists and implementing a comprehensive plan for William. Tonya stopped teaching so she could help William on a full-time basis. Ben continued his career in HVAC (heating, ventilation, and air-conditioning). Ben and Tonya learned about Lekotek while attending the annual FOCUS (Families of Children Under Stress) Conference to learn more about services for children with special needs. At the conference, Tonya met Helene who was demonstrating adapted computer devices and describing Lekotek services. The Lekotek program sounded like fun and fun was something missing in William’s life. The Mason’s didn’t know what to expect when Helene called to schedule William’s first play session but they did know that William was desperately in need of some FUN. They didn’t realize that Lekotek would become an important part of William’s educational team. According to Tonya, “Lekotek is unique in focusing on William’s strengths and abilities. William is learning to use a track ball and learns something new at every session. And he’s playing and laughing with “Eee” (Helene) the whole time.” Ben, Tonya and
William participate in Lekotek family outings and enjoyed the Lekotek
Run (or in their case, Walk) a few weeks ago in September. Not only do
the Masons support Lekotek by participating in fundraising events like
the run, but Tonya volunteered to help with Lekotek’s annual summer
computer camp. As a teacher she was a great asset to camp. Lekotek is
proud to be a part of William’s accomplishments and appreciates
What Lekotek Means to Me -- by Amy Ballew My name is Amy Ballew and I am a junior at Norcross High School. I have been doing fun things at Lekotek since I was little. I met Miss Helene, my Lekotek leader, before I was one. Once a month she gave me lots of toys to play with. I didn't realize it then, but Helene chose certain toys that would help me learn all kinds of things. I learned shapes, numbers, colors and letters. My speech improved as I talked about what I was playing with and my ability to use my hands also improved. I even learned how to walk with a toy car that we borrowed from Lekotek. It had a handle on the back and made noise. I pushed it all over the house on my knees until I got tired of that and stood up. I walked all around the house with that car because I loved the noise the car made. Lekotek helped my mom and dad too when they had questions or wanted to know about programs that could help me. Even my brother liked coming to Lekotek and was a volunteer at Lekotek summer computer camp. I have done many things with Lekotek - overnight camping trips, summer computer camp, Happy Tails pet therapy, Lekotek runs and now my most favorite, computer club where I play computer games and have pizza with friends. I hope I never get too old for Lekotek because it is so much fun. I am thankful for everyone there. (Amy is a youngster with Down syndrome who attended her junior prom and participates in school activities with her peers.)
Charlie -- Laughter is the Best Medicine They say that laughter is the best medicine and we have taken that to heart since Day One. For our family, Day One was when our son, Charlie, was three months old. At that time, our perfect little boy was diagnosed with low muscle tone and developmental delays. We began physical therapy immediately. In addition to the activities that our therapist recommended, we began the therapy that we enjoy most - laughter therapy. We could think of no better way to strengthen those floppy little muscles than to laugh. And so we focused on not just a smile or a giggle but a big from-your-middle belly laugh. While Charlie was strengthening his little tummy muscles, we were all having fun. The heart of laughter is what initially brought us to Lekotek. With therapy appointments, school, and much needed naps, little time is left for new kinds of play. Our Lekotek leader, Beth Yager, has introduced us to unique computer activities. Using adapted input devices which include Intellikeys and the touch window Charlie enjoys the computer and benefits from all that technology has to offer. Charlie also enjoyed the recent loan of a motorized mini-car powered by a joystick. (Mom and Dad would have loved one of these too!) Slowly but surely, Charlie grows stronger every day. He is a big flirt and is always happy. He can push his own wheelchair, feed himself and communicate using facial expressions, gestures and a computer. Charlie's biggest strength continues to be his smile and infectious laughter. While others may look at our situation and judge Charlie by the things he can't do, we choose to focus on the wonderful things he can do. We have truly been blessed and the sound of Charlie and his sister laughing is the perfect remedy for anything that ails you.
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Day
by day the dark clouds of fear and worry dissipated, and we began to see
David for the wonderful and bright baby boy he was, not the diagnosis.
He really was like any other infant only with hypotonia, or low muscle
tone. At the tender age of 2 months, David started physical therapy to
strengthen
his muscles and coordination. At eight months we added occupational
therapy to strengthen his fine motor skills, and at a year we rounded
out our team of professionals with a speech therapist. We also became
involved with the Down Syndrome Association of Atlanta and met many
other wonderful families traveling along the same journey.
In the midst of all the potential issues my son had and would face, I
had no idea where to start. Fortunately, a nurse at Northside hospital
told me about Lekotek. She said that one of their leaders came out and
held “play sessions” with the NICU (neonatal intensive care unit)
families. My husband and I knew we had a long challenging road ahead so
we decided to give Lekotek a try. A few days later, I received a visit
from our Lekotek leader Peggy McWilliams - a visit that has forever
changed our lives.
Meet the Copenhavers
Tyler and His Family -- What Lekotek Means to Our Family
Our Family -- by Beth Burton
Meet the Masons