lekotalk:  May 2007

Contents:

• Voters Know a Star When They See One

• Lekotek Celebrates Its 24th Anniversary

• Golf Tournament Raises $16,500

• What Lekotek Means to Our Family

• How Do I Play with a Child Who Doesn't Want to Play with Me

Voters Know a Star When They See One

by George Vecsey

Edited and reprinted with permission from the New York Times Sports Section April 15, 2007

Jackie Joyner-Kersee. Eric Heiden. Mark Spitz. Sarah Hughes. Bonnie Blair. These are some of the names on the Sullivan Award, given for the past 76 years to the best American athlete in amateur sports. A new name will be engraved on the trophy, that of a young woman born in Russia, without bones in her lower legs, a double amputee at 18 months. Jessica Long of Dundalk, MD, is the first Paralympic athlete to win the Sullivan Award. Day by day, the importance of this election strikes home. The voters considered a 15 year old athlete with no lower legs to have had the best year of any American, including Michael Phelps, the swimmer and Brady Quinn, the Notre Dame quarterback. Comparing these national celebrities to a swimmer with disabilities might seem like an exercise in apples and oranges, but the Sullivan voters recognized a star athlete when they saw one. Long won three gold medals at the Paralympics in Athens in 2004, at age 12, and trains against able-bodied swimmers at home, beating most of them. Last year she won nine gold medals in world competition in South Africa. She swam in a one mile race across Chesapeake Bay and for recreation, she climbs rocks. “She’s basically fearless,” said Julie O’Neill, her Paralympics swim team coach.

Jessica’s parents recognized the heart of a champion before she turned two. Her journey to the Sullivan Award began with a young couple, Steve and Beth Long, whose dream of several children seemed to end after two children. Attending a meeting to learn about adoption, they heard about a girl in Irkutsk,  Russia, who was born without fibulas and put up for adoption by her young mother. “Following a lot of soul-searching and a trip to the other side of the world we returned with two children, Jessica, now 15, and Joshua, now 14”, said Steve. Joshua needed surgery for a cleft palate but Jessica needed much more. After only a few months in the United States, her parents realized both legs would need to be amputated below the knee. “After the amputations, we were told she would need therapy to learn to walk using prosthetic limbs but she just got up and started walking. She loved basketball, gymnastics and swimming.”

Today, she is training for the Olympics in Beijing and adjusting to winning an award over 14 finalists, including two college basketball players, Joakim Noah of Florida and Candace Parker of Tennessee, who this year won nationally televised college championships. “They called my name and I was in shock,” Long said in a telephone interview. While Long is the first so-called athlete with a disability to win the Sullivan Award, she does follow the 1987 winner, Jim Abbott, a left-handed pitcher who was born without a right hand. Abbott competed for Michigan, helped the U.S. win the 1988 Olympic gold medal in Seoul, South Korea, and later pitched a no-hitter for the Yankees. Abbott set the example one way; Long sets it another. “She proves that Paralympians are elite athletes,” said O’Neill. O’Neill is somewhat bemused that she is working with a young woman born in Russia. As it happens, O’Neill majored in Russian history, has lived there and speaks the language.

“I used to think about going back to Russia but now I don’t think about it much, said Jessica.” And her parents have not been back since their fruitful visit 14 years ago. The Longs are not thinking of adopting anytime soon. They are very busy. Shortly after adopting Joshua and Jessica, they had two more daughters, giving them the large family they had wanted with Amanda, Steve, Jessica, Joshua, Hannah and Grace. The children are all equal at home. But one of them has won the Sullivan Award. Rafer Johnson. Wilma Rudolph. Bill Bradley. Carl Lewis. Michelle Kwan. They are now in good company with Jessica Long.

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Lekotek Celebrates Its 24th Anniversary

In July of 1983, I visited the National Lekotek in Evanston, IL, returned to Atlanta and filed for tax exempt 501(c) (3) status. Thereafter, I diligently searched for donated space since the organization did not have a penny to its name. In February of 1984, Easter Seals offered their basement (which was very cold in the winter) and subsequently Liz Claiborne, Easter Seals and Citicorp were Lekotek’s first three sponsors. With $15,000 in the bank, an initial inventory of adapted toys and educational materials was ordered and play sessions began October 1984. At that time, the one and only program service was the monthly play session. Today services include neonatal and hospital play sessions, computer loans, Compuplay, computer evaluations, computer summer camp, music classes, play days, family programs, computer club, Leko-Pals, support groups and collaborative programs with FOCUS and Happy Tails. Perhaps our greatest accomplishment is satellite development with four sites in Alpharetta, Duluth, Kennesaw and Fayetteville in addition to the main office in Atlanta. Two are housed with Children’s Healthcare of Atlanta and one at the Joseph Sams’ School.

As the organization has grown so too has the staff and board of directors. The combined talents and dedication of the board and staff have resulted not  only in growth but in standards of excellence.

Now that Lekotek is 24 years old, many of our first kids are teenagers and young adults. They enjoy bowling, computer activities and pizza on Sunday afternoons at alumni computer club and Leko-Pals. Both these programs include typical high school students who are peer mentors and help Lekotek attain its mission of inclusion.

Interested in learning if Lekotek could have done anything differently to have helped families when their children were infants and toddlers, we hosted a Night of Reflection and asked that question looking for constructive criticism. Nine families attended. Their children are currently in diverse settings ranging from college to sheltered work environments to a residential setting. The overwhelming response was that Lekotek was a place that always provided unconditional support, resources and hope. The following comments were made by moms and dads who attended:

• It was the only place where I was not my child’s therapist. I could be mom and play.
• Matthew had a number of “firsts” at Lekotek because it was fun.
• Lekotek was a breath of fresh air.
• Lekotek helped Lindsey communicate by giving her choices even though she could only respond with an eye gaze.
• Camping trips encouraged our family to participate in everyday activities.
• It was an oasis that lightened our load. It was a place that always gave us hope.

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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.

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.

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.

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How Do I Play with a Child Who Doesn't Want to Play with Me

by Brenda Mason Lowell and Mary Ellen Glazier

• Build from the child’s interests. Create a bag of goodies or a Mystery Box filled with things that interest the child. Make the box/bag visually appealing and it will become a symbol that something fun is going to happen.

• Notice what catches the child’s attention and build on it. Imagine it like a dance … he moves one way and you follow.

• Imitate the child’s actions. Copy what the child does and says.

• Limit your talking. Use picture cards and give the child choices.

• Take your lead from the child. Gently enter his play space with playful actions.

• Act like you’re having a great time, even if he ignores you. The act of having fun is (eventually) interesting to most children. Watch for subtle signs that he wants you to continue… an eye gaze, a change in posture or energy level.

• Start with short, enthusiastic play attempts. If the child turns away or runs away, slowly reposition yourself and begin again.

• Don’t take it personally! He would love to play with you if he only knew how.

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