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.

August 1, 2017August 1, 2017

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!

July 16, 2017

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.

“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.

July 13, 2017July 12, 2017

‘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.

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.”

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.

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

June 28, 2017June 28, 2017

Employment Success for One Self-Advocate Includes Promotion to Manager

25-year-old Jack Murphy is proving competitive and satisfying employment for individuals with Down syndrome is possible with hard work and dedication.

Jack recently received a promotion to manager at Cactus Grill in Kansas City, Missouri.

His level of success is still uncommon in the Down syndrome community. With a 70% unemployment rate, many individuals with Down syndrome are lucky to even have a job and most are not working full time or in a high-valued position.

So how did Jack beat the odds?

“I have loyalty to the customers and staff at Cactus Grill. I’ve worked there for over 9 years, it’s a huge part of my life, and my job makes me hold my head high,” Jack Murphy says.

His mom, Bridgett, says Jack faces the same challenges as other individuals with Down syndrome, but the focus in their family has always been on hard work and shared responsibility.

At 2-years-old his parents created a vision statement for Jack with 3 specific goals:

By adulthood, Jack would live away from home.
Jack would have a satisfying job.
Jack would have a satisfying social life.

“Everything we do will be moving him towards those 3 goals. Whether we did full-inclusion in school, or some variation of it. Sometimes a general education classroom was important for the development of appropriate social or behavior skills. Any time we met with his IEP team we reviewed our vision statement, and asked if he had moved towards his goals,” Bridgett explains.

Jack was setting the family table by 4-years-old and always had responsibilities at home.

“We all work. Our family works. As Jack grew older we were always asking our kids ‘what do you want to be when you grow up?’ Bridgett says.

At 16, Jack told his mom he wanted a job at their favorite local restaurant, Cactus Grill. “I made her drive me to the restaurant to apply,” Jack describes.

Jack Graduating from University of Arkansas

“One piece of advice I have for parents and young adults with Down syndrome is to make yourself known at the places you frequent. Introduce yourself and your child. Jack got the job at Cactus Grill, in part, because they already knew him. It’s always about who you know,” explains Bridgett.

Jack started as a hostess in high school, but after graduation left for college at both the University of Iowa and the University of Arkansas. “The University of Arkansas program had an internship in the third year. I had to make a decision in my heart. Should I stay and complete the internship, or come back and take a permanent job with Cactus Grill,” Jack explains.

He decided to come home, and Cactus Grill’s new general manager realized Jack’s loyalty and work ethic was unmatched, and decided to give him a promotion to hostess manager.

“I met Jack 8 years ago while serving at a sister restaurant where Jack was a hostess. We went out to the movies together and I really got to know him. He’s a really moving guy; such a hard worker. I don’t think he was always given the opportunities he deserves. When I came back on as general manager I realized everyone loves Jack. Quite a few people come in just to see him,” Cactus Grill General Manager Paul states.

Bridgett says her son was especially moved after an inspiring breakout session at the National Down Syndrome Congress Convention by Tim of Tim’s Place. “Tim talked about what it takes to run a successful business, and Jack suddenly realized he deserved the same success as Tim. He went from being just an employee to a committed member of Cactus Grill,” Bridgett describes.

“I love the new position. My responsibilities are running the hostess stand. I talk about the line up. And deal with the customers,” Jack explains.

Paul says more employers should hire people with Down syndrome. “My friends and I often talk about why other restaurants haven’t brought on employees like Jack and Carolyn (another Cactus Grill employee with Down syndrome). They do everything by the book and give 100%. I’m amazed at what great workers they are,” Paul describes.

As Jack starts his new chapter at Cactus Grill he has some advice for others that want to follow in his footsteps:

“My advice is to be honest about yourself. Show them what you got. Go in there and apply for the job. It’s my confidence and loyalty, love and passion that got me here,” Jack exclaims.