Serving Up Sportsmanship Through Inclusive Tennis

Tennis requires a fast response time, hand-eye coordination and a lot of stamina. The non-profit, Buddy Up Tennis, is serving up these skills to athletes with Down syndrome and creating a community of tennis lovers.

Serve it, smash it, win it, love it! 

Athlete, Walter May (left), warming up with his Buddy, Jeff

The 90-minute weekly session I watched locally would have anyone’s heart rate up. More than 20 athletes with Down syndrome teamed up with “buddies” who also enjoy the sport. There was a half an hour of high-intensity calisthenics, another half hour of basic skill building, and then time to play the game.

“Buddy Up Tennis is my favorite MVDSA (Miami Valley Down Syndrome Association) activity. My buddy, Jeff, is so funny and I accidentally hit him with the tennis ball a couple times this Saturday but he just laughed,” explains athlete Walter May. Buddy Up Tennis even led to a job for May at the local tennis club.

The non-profit was started in 2008, when an Ohio mom, Beth Gibson, was playing tennis with her typical child and noticed her 3-year-old son with Down syndrome loved watching them play. “Will was always fascinated with tennis.  Staff members at our tennis club soon volunteered to teach tennis to Will, and researched techniques for teaching children with Down syndrome in order to do so.  As a result of this research, the need was identified for an organized tennis and fitness program for individuals with Down syndrome,” Gibson explains.

No experience is required and all individuals with Down syndrome 5-years-old and up are welcome to play. The program teaches the following skills:

  • specialized training in the fundamentals of tennis
  • improvement in muscle tone, core strength, agility, coordination skills
  • opportunities to expand social and emotional skills through sportsmanship and team building
  • connection to the Down syndrome community in your area

Buddy volunteers are at the heart of the Buddy Up Tennis program.

The buddies include a combination of tennis professionals and typical peers who love the game. Anna Jones, head coach for Dayton’s Buddy Up Tennis says the local group has a strong following. “It’s a great opportunity for everyone involved,” Jones says.

My Dad, Bill, with Aljoon and friend

My Dad is visiting from California, and is an old tennis pro from way back. He was chopping at the bit to get out their and play. By the end, he’d made fast, new friends with 14-year-old Aljoon, who happens to rock an extra chromosome. “What an awesome program! I can’t wait for Troy to be old enough to play. Tennis is a great sport and these kids are gaining life-long skills they can use to stay active,” my dad happily describes.

In 2016, the United States Tennis Association named Buddy Up Tennis the “Adaptive Tennis Program of the Year.” Today there are 17 locations throughout the nation from Ohio to Texas.

Find out if there’s a Buddy Up Tennis program in your area or how you can start your own here.

 

 

Brother Urges Parents to Prepare Typical Siblings For the Future

“My sister helped shape the trajectory of my life!”

Phillip Clark adores his sister, Sarah.

“I was 4-years-old when she was born, and I knew she was different then. From a young age, I knew I would always protect her.”

Clark kept his promise. He even created a career path centered around Sarah and other individuals with disabilities.

Clark owns ENABLE Special Needs Planning, LLC, and works with families daily to get their financial, life, resource, and legal plans in order for their child with a disability.

Phillip with his parents, wife, and sister’s Sarah and Grace

“We often talked about future planning in our family. When I was going away to college, my parents sat me down and explained how they prepared for Sarah’s future. They said she would live with one of my cousins if my parents both passed on. I told them ‘absolutely not! Sarah and Grace (the youngest, typical sister) would live with me’.”

When Sarah was born 28-years-ago, doctors told her parents she would
never learn to read, among many other limitations. However, today, Sarah works as a second grade teacher’s aide, tutoring students in reading.

 

Clark credits Sarah’s success to his parent’s diligent planning early on. “They always focused on her abilities, and they always included my typical sister, Grace, and I in the decision-making process.”

Phillip Clark with his sisters, Sarah and Grace

In his professional experience, Clark has found that parents who didn’t plan are struggling as their child ages.

“Some of these parents are in their 60s, and their adult child is in their 40s. Many didn’t plan, and now there’s not much help for them. Most end up in government run day programs, because the parents can no longer care for them at home.”

His advice, start early and think abundantly about your child’s future. Include your typical children as early as possible in the future decision-making plans.

Clark is optimistic about the opportunities that individuals with special needs and their families currently have. He believes these opportunities will continue to grow as awareness continues to get stronger.

“The generation before Sarah was often institutionalized because people didn’t realize the profound impact that individuals with special needs could have on their families, communities, and businesses. Sarah’s generation was the first to widely stay at home with their parents; but the awareness and opportunities weren’t yet there for them to be fully included in all aspects of life. The next generation will have countless opportunities for inclusion, and parents need to be prepared for this new reality.”

Clarks says it’s not enough to plan financially. 

His personal journey allows him to understand the difference in planning  special needs families face, compared to typical families. He explains that every aspect of your family’s life and child’s life must be carefully considered.

It is important to plan financially, but equally important to create a Life Plan and a Resource Plan. He says you must make a Life Plan for your child that gives him or her every opportunity to live a purposeful, impactful life.

As for Sarah, Clark says she is busy leading a fulfilling and purpose-filled life, but he’s prepared to help her when she needs him.

Clark is a Special Needs Planning consultant licensed to serve families in every state. He provides Life, Resource, and Financial consulting services and referrals for Legal Planning. He also created a database of resources for special needs planning. See what services Clark can provide your family here.

Inclusion Evolution and it’s author did not received any services from Clark or Enable Special Needs Planning.

Using Improv Theater to Build Confidence in Self-Advocates

What a better reflection of the uncertainty of life than Improv Theater. Improvisation is a type of theater in which the plot, characters, and dialogue are made up in the moment. Like life, you will never see the same improv show twice. 

This month, I got a chance to take some of my favorite adult self-advocates with Down syndrome out to a local Improv Theater. We got to see our very own Communications Workshop Educator, Stephanie Radford (heavy on the “RAD”), perform and boy did she steal the show. It’s a great precursor to this month’s workshop that focuses on improv skills. Read more about our past workshops here.

My family and some of my favorite self-advocates get a chance to see Stephanie Radford (bottom left) perform Improv

Although improv can be down right scary, with no sense as to what’s coming next, it’s also been shown to build confidence and decrease anxiety.

This seems oxymoronic, but it’s true. The lack of planning and structure requires role players to depend on each other.

Stephanie Radford (right) performing Improv

Psychology Professor, Gordon Bertmant, explains “if all play authentically to each other, fear of failure loses its sting—a net of support is constructed from the openness, trust, and acceptance.”

For individuals with Down syndrome, who often struggle with small talk and conversational speech, improv may seem unattainable but the net of support makes it worth learning.

The goal of our monthly Communications Workshops is to prepare our self-advocates to lead our Buddy Walk. This will require thinking on their toes and good conversational skills. Improv adds another tool to our tool belt.

“When you think of Improv remember the ‘Yes, and….’ Rule,” explains Communications Workshop Educator, Stephanie Radford. “You want to agree with the person you’re talking to and add something to their line of thinking.”

Stephanie Radford directing some of our self-advocates through an improv scene

Radford had the self-advocates practice having a conversation with a peer who always said “NO!” This “denier” proved that a good conversation cannot thrive without the “Yes, and…” rule. The self-advocates practice this rule, and agreed that a conversation flows much better when you agree and add something to the conversation.

Sally courageously gets on stage and tells us about her road trip. Here’s a picture she shared of her trip.

This was perhaps our hardest workshop to date. At least one self-advocate was petrified to get on stage. Others had a hard time adding appropriate information to a conversation to keep it going. Still, by the end of the session self-advocates were doing a better job of understanding that all good conversations rely on the support of each person participating. Even our most scared self-advocate took the stage at the end and used her improv skills to tell us about her recent road trip to South Carolina.

We’re so impressed at the progress our self-advocates have made in four short workshop sessions. A positive net of support and a new toolbox full of communication skills have nudged our self-advocates to be more self-confident in their interactions with other people. I can’t wait to see them in action at the Buddy Walk this year!

How One Retired Police Officer is Changing Perceptions of Down Syndrome

Ethan Saylor

The name alone brings instant sadness to the minds of special needs parents everywhere. A life taken too soon. A senseless death. 

The 26-year-old man with Down syndrome died after police restrained him in a movie theater that he refused to leave. Ethan stayed for a second viewing of a movie, without having paid for it. The aide that was with him at the time begged the off-duty police to not aggravate Ethan; that his mom would soon arrive and make him leave. The death was ruled a homicide as a result of asphyxia, and the off-duty police officers involved are now being tried in a civil law suit.

GTO Cadet, Tyler Caldwell (left) and GTO Founder, Travis Atkins (right)

21-year law enforcement veteran, Travis Atkins, says the Ethan Saylor death was a travesty that should have never happened. Now he’s started a non-profit to help change perceptions of people with intellectual disabilities within the law enforcement community.

Growth Through Opportunity (GTO Cadets) is a program designed to provide adults of all ages with Autism Spectrum Disorder, Down Syndrome, Cerebral Palsy, and other unique challenges an opportunity to gain valuable job skills and social experience.

GTO Cadet with a First Responder

“First responders and GTO Cadets grow immensely in their respective levels of understanding by being partnered together over a 16-week period. This drastically decreases negative encounters during future, real-life situations,” Officer Atkins explains.

I got a chance to hear Officer Atkins talk at the 1st Annual NDSS #DSWorks conference. He brought along one of GTO’s first cadet graduates, Tyler Caldwell, who happens to have Down syndrome.

“I got to wear a uniform just like all the other officers. When I was at State Special Olympic Games, I got to wear it and march in the torch lighting ceremonies with officers from other cities. People would recognize me when I was out as one of the GTO Cadets. That really made me happy. All my friends wanted to be in the program, too. Police officers are really nice people and are my friends,” Caldwell describes.

After spending 16 weeks as a volunteer cadet, Caldwell got a job at Kroger. “People recognized me from Police Department,” Caldwell says. And Officer Atkins says that’s the end goal. “Our goal is to enhance confidence, employability, and quality of life for participants. From a law enforcement officer’s perspective, there’s no better way to learn than by first-hand experiences in a controlled environment,” Atkins explains.

With the assistance of a first responder, cadets are taught specific tasks inside the department, as well as in the community.

“They assist our police department with crime prevention presentations, role playing at the police academy (which helps mold the minds of young recruits), and playing the role of the National Crime Prevention Council’s McGruff the Crime Dog®,” Atkins says. The City of Roanoke even has a sheriff’s vehicle and ambulance with the GTO logo, which helps break down barriers within the community.

Atkins says it’s community inclusion that will help prevent another tragedy like the death of Ethan Saylor. “GTO challenges other agencies across the nation to be pioneers and trend setters in the field. Be creative. Be innovative. Consider incorporating these fine individuals into your agency.”

To learn more about Growth Through Opportunity check out their website here or their FB page here.

 

‘Seeing the Forest For the Trees’ in my Son’s Future with Down Syndrome

My son, Troy, is almost 5-years-old. When he was born I knew no one and nothing about Down syndrome. 

Troy at 6 months

I was hungry for any information I could find about Down syndrome. I spent the first month of his life on Google (bad idea, by the way). I quickly graduated to national conventions, advocacy groups, and now specialized training in special education law.

Secret Facebook groups and specialized books taught me all I need to know…Or so I thought.

Nothing can replace trial by fire. Living life with someone who rocks an extra chromosome gives you a front row seat to the docudrama that is Trisomy 21. Troy has taught me so much about how outdated stereotypes and low expectations can warp your perception of disability.

But living with a preschooler with Down syndrome often reminds me of the saying “It’s hard to see the forest for the trees.”

Self-Advocate Communications Workshop

For a while now, I’ve been searching for ways to steal a glimpse into Troy’s possible future. I really want to see “the forest.” One way I’ve done this is through a communications workshop with adult self-advocates. Simply talking and interacting with adults with Down syndrome on a regular basis has taught me so much about what our future may hold and how to plan for the best.

This led to an opportunity, from our local Down syndrome group’s Executive Director, to talk about the impact of our communications workshop on a local radio show.

Walter (bottom left) with MVDSA Executive Director, Willie Cox, and I at iHeart Radio

The natural pick for my co-interviewee was Walter, a 45-year-old iHeart Radio lover! 

When we showed up to the radio conglomerate, Walter already had long-time friendships with every disc jockey, knew which of the 7 radio stations they were assigned to, and the exact times they each went live. Everyone hearts Walter!

I worked in radio for some time during college, and I came to appreciate the intimacy of the medium. You have to capture that emotion and authenticity the first go round, because your listeners can’t rewind or reread your story.

A common rally cry in the disability community is “Nothing about us, without us!”

Without Walter our story of advocacy would be flawed. We spoke with DJ, Kim Faris, about needed services and jobs for individuals with Down syndrome. Walter nailed the interview. He gave our radio interview the authenticity and emotion the audience will remember.

He was direct: “Hi, I’m Walter. I have Down syndrome and I’m proud of who I am.”

Not to mention, funny: “107.7’s DJ, Chris Davis, promised to pay me if I mentioned him today.”

I like to imagine an expecting or new parent with what seems like a scary diagnosis randomly tuning in just as Walter is proudly talking about his job. I know I would have loved to hear Walter when I was in the throes of Troy’s first few months.

Walter cracking jokes on-air

At 45-years-old, Walter did not get all the great services Troy receives through early intervention and inclusive education. Still, Walter thrives! It’s so important to remember what you’re actually advocating for sometimes. Just like Troy, Walter deserves a life of self-determination and choice. We really have to listen to our self-advocates at all stages of life to understand their needs and how to pave a better path forward.

You can listen to our radio interview live in the Dayton area on July 9th starting at 7 a.m. on any iHeart Radio Station: 107.7, 103.9, 94.5, 99.9, 104.7, and 106.5.

Or you can listen online here.

From Left: DJ Kim Faris, MVDSA Executive Director Willie Cox, Self-Advocate Walter, and I