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Because Every Child Deserves a Chance to Play

June 25, 2011 15 comments

This ‘In Their Own Words,’ is by Shannon Knall, the Autism Speaks Connecticut Advocacy Chair and proud mother of three awesome boys, one of whom is on the autism spectrum.

J walks around in circles in the corner of the tennis court.   His head is down. His hands are busily twitching and flapping.  Every now and then he mutters. A young woman and a young man circle around him, bouncing a tennis ball every now and then. They offer him a racquet, gently encouraging him to join the kids on the court.  He seems not to hear. They back away to give him space.

For the next three hours, the young woman and the young man, the boy’s tennis “coaches”, make repeated futile attempts to bring him into the group. He has two clear words; “nope” and an expletive. 

I watch J and his coaches for a while.  It is obvious that he is horribly uncomfortable, needs his space to adjust. I feel a familiar pit in my stomach. It’s the same one I get when I watch my boy plummet into his own world of autism.

This is the first day of Well Served Tennis Academy for kids with autism; a camp I created with a friend and fellow tennis player with grant funding from the United States Tennis Association (USTA), the Connecticut Council of Independent Living and Jocelyn’s Run, a local autism group.

Hosted on the grounds of the beautiful Ethel Walker School in Simsbury,CT, our goal was to create a social and athletic opportunity for kids with autism – kids who rarely get that opportunity. And by rarely, I mean almost never.

The Perfect Racquet, a local tennis shop donated all of our equipment so that each camper could leave with a racquet to hopefully allow for continued play. Our staff is completely volunteer, even the tennis pros.  Each child has at least one coach helping him with drills; taking a walk with him when he needs to take a break; holding his hand as they run a warm-up lap of the courts; high-fiving when contact is made with the ball.

After the third day of camp, I sent the following in an e-mail to our sponsors:

I felt compelled to write to you tonight after processing the day’s events at camp.

As you know, the autism spectrum is wide and varied, making it ever-more complicated to understand and/or treat effectively.  This certainly applies at Well Served Tennis Academy.

A boy named J started Monday. J has very little language. Monday he spent a great deal of the morning sitting in a corner of the court.  His volunteer coaches did engage him in exercises like sandwich races (two racquets together, ball in the middle – the goal to work on ball control, hand/eye coordination, moving the ball across the space of the racquet) and J did great. That was the only activity he participated in that day. Our goal is about exposure on the kids’ terms.  

After snack, his coaches, Trevor and Catherine figured out that they could have him push the ball against the fence or the court with the racquet and in so doing significantly raise his level of participation. J was squealing with delight.

On Tuesday, J participated in sandwich activity AND walked around the perimeter of the courts, picked up some balls and allowed his coaches to get on the ground with him and bounce the ball to him. I held the racquet with him and hit the ball back. We did this a lot. I was so happy he was ENGAGING!  And more importantly, J was again SQUEALING with joy.

On Wednesday, it rained. Ruh Roh. We went inside to the gym. I was very concerned about the kids’ tolerance for the noise and heat, but they did great. J started off bouncing the ball back and forth with his coaches. Mid-morning, I worked with him on holding the racquet while the coaches bounced a ball to him…and we hit it back. Over and over and over again. Finally, he needed a break so he sat down.

During breaks, J would sit with Catherine and lean against her, rub her hand and try so very hard to say her name. When he was ready again, he said “Trevor run”. AMAZING!

We made a game out of running Trevor around the gym. I guided him as he hit the ball back from Trevor’s tosses…all over the place so that he could watch Trevor RUN!  Suddenly and spontaneously, he stood up and allowed me to guide his racquet in a semi-forehand stroke to HIT THE BALL as it was fed to him. TEN times.  He sat down, and five minutes later did it again. He was so unbelievably happy that he was screeching with delight and well…left me with teary eyes.

I really wanted to share this with you because I want you to know that your support has made a PROFOUND impact on J, his fellow campers and all of us who have the privilege of working with them.  I have seen every kid grow day by day and it has been EXACTLY what I hoped and KNEW this camp could be.

As a mom to a child with autism, I am so grateful for the opportunity you have helped to secure for these children.

Tennis champion Boris Becker said, “I love the winning, I can take the losing, but most of all I love to play.”

Between the two camp sessions, we will give almost twenty-five children with autism a chance to play tennis on their own terms, at their own pace, with all the love and support we can.

Because EVERY child deserves a chance to play.

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“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

A Mother’s Thank You to Her Senator

December 21, 2010 3 comments

This guest post is by Shannon Knall, the Autism Speaks Connecticut Chapter Advocacy Chair and mother of three boys – her oldest has autism.  She worked with state legislators to pass the autism insurance reform bill in 2009.

I first met Senator Chris Dodd at a press conference in Washington DC in 2008.  I have lived in Connecticut for almost my entire life. Senator Dodd is a political icon here and as a result I was certainly intimidated by the mere thought of meeting him. How I wound up standing right next to him with an autism community delegation from Connecticut I have no idea, yet there I was.

Flashbulbs lit up as he entered the room. Without missing a beat, he strode to the podium and greeted Autism Speaks Co-Founders Bob and Suzanne Wright. He then turned to me. With an outstretched hand and a warm smile, he introduced himself.  We had a brief exchange as I explained to him that my son had autism and thanked him for his ongoing service to the disability community.

He looked at me and said, “Moms like you make me want to do everything I can to help. Never stop being the voice for your son.”

I haven’t.

Neither has Senator Dodd.

Without a doubt, his retirement will be a palpable loss for our community.

Before his last term comes to an end in January, he took a final stand for the autism community through the introduction of the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044).  This Act furthers the Senator’s work which he began through the Combating Autism Act (CAA), signed in to law in 2006. The , CAA, among other provisions, created a desperately needed focus on research in to the cause, treatment and cure for autism.  That original law will sunset in September of 2011 unless it is reauthorized by Congress to continue providing funding necessary for research and services and if that happens the momentum that has built up since December 2006 will sunset with it.

Prior to Senator Dodd’s introduction of the CAA, autism was an intermittent blip on the federal legislative radar.  Our community had been in desperate need of a comprehensive plan, one that is broad in scope but specific in delivery to address the spectrum of needs of our loved ones with autism.  The historic unanimous passage of the CAA changed all of that. With passage of CARA comes an  opportunity for autism to remain a continued focus of political attention in addition to matching more aggressive action in response to the autism epidemic.

As your constituent and as an advocate for my son, thank you Senator Dodd for your unwavering compassion for our families in our community not only here in Connecticut but nationwide, and the courage you had, once again, to be our champion.

For more information on the Combating Autism Reauthorization Act of 2010, please visit www.AutismVotes.org/CARA.

Hope and Autism Advocacy

June 22, 2010 1 comment

This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.

I know that you have heard the word HOPE, but have you ever felt the word HOPE? I have and I do.

I feel hope every year at the Greater Hartford Walk Now for Autism Speaks.

I feel hope when my son tells me he is “proud he has autism.” I feel hope when his brothers say they had fun at the Walk for the first time.

At this year’s Walk, hope warmed me every time I personally met a mother I’ve spoken to after her child was diagnosed and she said, “Thank you.” Hope fed my tired spirit when my son’s friend and his entire family joined our Walk team. Hope inspired me, as 8,500 people lined up to walk for their sons, daughters, grandchildren, nieces, nephews, friends, and neighbors. Hope brought me to my knees  as I watched families simply “be” with autism, not afraid of judgment or criticism. And hope brought me to tears as I gathered our legislative champions who I have worked so hard to get to join in the fight for our loved ones.

In 2009, Connecticut became the 13th state in the nation to require private insurers to cover the diagnosis and treatment of autism. Enactment of this bill finally ended autism insurance discrimination in Connecticut, but more importantly it brought hope to thousands of families.

Autism is now a buzz word in our state capitol of Hartford. Legislators are taking note of its impact on their constituents. We have champions who know our struggles, even know our kids’ names.

There is so much more to do to help the nation’s families affected by autism, so much more to do in Congress and in our state capitols. With hope in our hearts, we can and will prevail.

Hope is why I walk and it’s also why I advocate. Hope will be why I walk and advocate, until there is nothing to left to walk and advocate for.

Christopher Reeve said, “Once you choose hope, anything’s possible.”

I choose hope.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visitwww.autismvotes.org

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