Stories

Shay’s Story

At  a fundraising dinner for a school that serves  children with learning disabilities, the father  of one of the students delivered a speech that  would never be forgotten by all who attended.  After extolling the school and  its
Dedicated staff, he offered a  question:

‘When not interfered with by  outside influences, everything nature does, is  done with perfection. Yet my son, Shay,  cannot learn things as other children do. He  cannot understand things as other children  do.

Where  is the natural order of things in my  son?’

The  audience was stilled by the query.

The  father continued. ‘I believe that when a child  like Shay, who was mentally and physically  disabled comes into the world, an opportunity to  realize true human nature presents itself, and  it comes in the way other people treat that  child.’

Then he told the following  story:

“Shay and I had walked past a park  where some boys Shay knew were playing baseball.  Shay asked, ‘Do you think they’ll let me play?’  I knew that most of the boys would not want  someone like Shay on their team, but as a  father I also understood that if my son  were allowed to play, it would give him a  much-needed sense of belonging and some  confidence to be accepted by others in spite of  his handicaps.

I approached one of the  boys on the field and asked (not expecting much)  if Shay could play. The boy looked around for  guidance and said, ‘We’re losing by six runs and  the game is in the eighth inning. I guess he can  be on our team and we’ll try to put him in to  bat in the ninth inning.’

Shay struggled  over to the team’s bench and, with a broad  smile, put on a team shirt. I watched with a  small tear in my eye and warmth in my heart. The  boys saw my joy at my son being  accepted.

In the bottom of the eighth  inning, Shay’s team scored a few runs but was  still behind by three.

In the top of the  ninth inning, Shay put on a glove and played in  the right field. Even though no hits came his  way, he was obviously ecstatic just to be in the  game and on the field, grinning from ear to ear  as I waved to him from the stands.

In the  bottom of the ninth inning, Shay’s team scored  again.

Now, with two outs and the bases  loaded, the potential winning run was on base  and Shay was scheduled to be next at  bat.

At this juncture, do they let Shay  bat and give away their chance to win the  game?

Surprisingly, Shay was given the  bat. Everyone knew that a hit was all but  impossible because Shay didn’t even know how to  hold the bat properly, much less connect with  the ball.

However, as Shay stepped up to  the
Plate, the pitcher, recognizing that the  other team was putting winning aside for this  moment in Shay’s life, moved in a few steps to  lob the ball in softly so Shay could at least  make contact.

The first pitch came and  Shay swung clumsily and missed.

The  pitcher again took a few steps forward to toss  the ball softly towards Shay.

As the  pitch came in, Shay swung at the ball and hit a  slow ground ball right back to the  pitcher.

The game would now be  over.

The pitcher picked up the soft  grounder and could have easily thrown the ball  to the first baseman.

Shay would have  been out and that would have been the end of the  game.

Instead, the pitcher threw the ball  right over the first baseman’s head, out of  reach of all team mates.

Everyone from  the stands and both teams started yelling,  ‘Shay, run to first!

Run to  first!’

Never in his life had Shay ever  run that far, but he made it to first  base..

He scampered down the baseline,  wide-eyed and startled.

Everyone yelled,  ‘Run to second, run to second!’

Catching  his breath, Shay awkwardly ran towards second,  gleaming and struggling to make it to the  base.

By the time Shay rounded towards  second base, the right fielder had the ball .  The smallest guy on their team who now had his  first chance to be the hero for his  team.

He could have thrown the ball to  the second-baseman for the tag, but he  understood the pitcher’s intentions so he, too,  intentionally threw the ball high and far over  the third-baseman’ s head.

Shay ran toward  third base deliriously as the runners ahead of  him circled the bases toward home.

All  were screaming, ‘Shay, Shay, Shay, all the Way  Shay’

Shay reached third base because the  opposing shortstop ran to help him by turning  him in the direction of third base, and shouted,  ‘Run to third!  

Shay,  run to third!’  

As  Shay rounded third, the boys from both teams, and the spectators,  were on their feet screaming, ‘Shay, run home! Run  home!’

Shay ran to home, stepped on the plate, and was  cheered as the hero who hit the grand slam and won the game for his  team

‘That day’, said the father softly with tears now  rolling down his face, ‘the boys from both teams helped bring a  piece of true love and humanity into this world’.

Shay didn’t  make it to another summer. He died that winter, having never  forgotten being the hero and making me so happy, and coming home and  seeing his Mother tearfully embrace her little hero of the  day!”

_________________________

Camp Twitch and Shout

“I remember eating lunch at school all by myself and the mean kids would parade around me and mock my noises. My teacher made me get up in front of the class and apologize to everybody for the noises I was making,” Cohen recalls.

More than 20 years later, Cohen is a camp director, celebrating the first year of Camp Twitch and Shout, a place for youngsters, who like Cohen, have Tourette syndrome.

“Tourette syndrome is a neurological disorder which causes people to make noises and tics that they can’t control,” Cohen says.

Fifty campers, between the ages of 7 and 18, came from all over the country to spend a week in Winder, Georgia, about 45 miles east of Atlanta. They have plenty to do, from swimming and fishing to music and arts and crafts. Most have been teased or harassed in school, and the camp is a place just to have fun.

“It’s very nice to be able to let it all out and just not have to worry and not have people stare at you and think that you’re weird and think — what’s wrong with that person?” says 16-year-old camper and black belt Tinsley Birchfield of Atlanta.

For other campers, such as Jacob McGee of Savannah, Georgia, just being outdoors is magical. “My favorite part was when we climbed the tree. That was pretty awesome. I went as high as I could go. It was really fun,” says the 11-year-old. <!–[if !vml]–><!–[endif]–> <!–[if !vml]–><!–[endif]–>

According to experts, Twitch and Shout is one of only five weeklong camps in the country for children with Tourette syndrome. Atlanta-based child neurologist Howard Schub says such camps help children better cope with their condition. Some campers have never met another kid with Tourette syndrome.

“A child goes to camp, they see that they’re not the worst. … There are others that are functioning pretty well with worse tics than they,” Schub says.

Cohen adds, “They see that wow, ‘There are other kids that are like me.’ They laugh, they tell the same jokes, they have the same interests. And what we hope is that their self-esteem goes up.”

Twitch and Shout campers display motor tics common to most kids with Tourette syndrome such as eye blinking, facial grimacing, shoulder shrugging, head jerking, and — in a few rare cases — cursing. Camp activities are filled with the sounds of typical vocal tics: sniffing, throat clearing, hooting, barking, hissing and squealing.

But campers such as teenager Kevin Kardon of Athens, Georgia, say they’ve just gotten used to it.

“It’s just kind of like you’re listening to music, and you hear something in the background and you don’t really hear it,” Kevin says.

According to the Centers for Disease Control and Prevention, three out of every 1,000 school-age children are believed to have Tourette syndrome. The cause is unknown, but genetics appear to play a role. Most children develop the condition between 7 and 10, and if their tics are mild to moderate, they usually require no medicine to control them. Symptoms usually peak during the late teens or early 20s.

“Many children, as they get older, the tics become either much less prominent or certainly reduced to a single or just a few tics that are not as disabling,” Schub says.

That was certainly the case with Cohen. Barking is still his dominant tic, but when he was the age of his campers, he wrestled to control several others, including eye blinking, teeth chomping and arm twitching. In middle school, when his tics were at the height of their intensity, the principal approached him and asked if he’d like to educate the student body about his condition. Cohen says this move changed his life.

“They gave me a standing ovation, and it was on that day that I realized the power of education. I wanted to be that teacher that I never had. And that was my dream. I wanted to be the teacher that focused on kids’ strengths, not weaknesses,” he says.

And that’s what he’s been trying to do in the classroom for more than 13 years. At 35, Cohen is an elementary school teacher, the author of a book on Tourette syndrome and now a camp director. He says he hopes his campers find strength in knowing they are not alone and will carry this new confidence home with them to face the challenges of the upcoming school year.

“When they have tough times and they think they can’t find success, it’s our goal that they will think back to their experience at Camp Twitch and Shout and say, ‘You know what? I can do it; I can be successful because I did it at camp,’ ” Cohen says.

Next summer, Cohen says he plans to recruit twice as many campers and hopes the experience will be as worthwhile for them as it was this year for 15-year-old Chris Wall of Athens.

“This camp was awesome because it had people just like me,” says Chris, beaming.

_______________________________________

My Friend Saved My Life

July 6th, 2009

“My Friend Saved My Life. After a night of drinking at the bars on SLU’s campus I jumped into my car and proceeded to go back to my house in St. Charles. Before I could be on my way, however, I stopped at the nearest gas station to fill up my tank before I headed off on my 25 mile trek. I pulled into the CFM at Grand at Hwy 40 to do just that when I ran into one of my friends. I had not seen in sometime. He asked how I had been, what I did that night, and what I was about to do thereafter my stop at the gas station. Recognizing that I was not in the best shape to drive he attempted to convince me to just stay at his apartment which was only a block away. Adament about going home I told him that I was fine to drive home. Then, he ran to his car and came back with the blue “How to Save a Life” wristband, and said “come on it’s not worth it.” That’s all it took for me. After he handed me the wristband I parked my car on the other side of the parking lot, jumped in his car, and spent the night on his couch. I don’t know exactly what would have happened if I drove home that night, but what I do know is that I am no longer willing to test it. His act of strength in my time of weakness saved my life whether he knows it or not. I don’t see him very often but when we do cross paths I always bring up the time he saved my life. Since that night I have often tried to replicate his actions and show the strength to others that he was able to show me that night. “