“You’re in this for the long haul” – A Lifelong Advocate’s Ask of Families To Speak Up

Graduation picture

Kandi, Ginger, Austin, and Don

Ginger Pottenger has been a member of The Arc – at either the local, state, or national level – since the early 1970s. She lives in Arizona, near her daughters, Kandi and Kristi.

How did you get involved in the disability advocacy movement?

I was an advocate before I knew it what that really meant. My daughter Kandi, who will soon turn 51, was diagnosed with “mental retardation”, as it was known then, when she was 3. The diagnosing doctor’s advice was to take her home and love her. And that’s what we did. We stumbled into inclusion. We were lucky to be in a community and at a pre-school that saw the value in her being included with kids without disabilities. When Kandi started grade school, someone asked me if we were involved in The Arc. So I went to my first meeting at my local chapter, and before long, I was serving on their board.

As a parent, what were some of the early struggles and triumphs you encountered?

I didn’t fully appreciate it then, but Kandi’s inclusion in pre-school was a triumph at that point in time. This was still the era of putting kids in institutions. But we had our ups and downs – I had to push hard to have Kandi walk at high school graduation. Then as a young adult, living a few towns away and working in the community, we had some serious issues with the staff.

You have been both a “professional advocate”, serving as an executive director of chapters of The Arc and on boards and other positions, and a parent to Kandi. How have those experiences shaped how you advocate?

I have seen the power of the personal, nitty gritty story, on public policy. People are too scared to get on the phone or get in front of their elected officials, and tell them the consequences of their policy decisions. Or people will think they don’t have time to advocate. And I understand raising a family, including a child with special needs, maintaining a career, a marriage, a life – it all takes time. But you’re in it for the long haul as a parent. Share your hopes and dreams for your family, the struggles, your fears.

What’s your biggest concern today for the future of Kandi and other people with I/DD?

What is going on at the federal level with funding and the structure of Medicaid scares me to death. And it should scare others into action. The threat to our funding is real and if we lose the supports that Kandi has, our options are bleak. Chapters of The Arc should be the place they go for training on how to advocate, for encouragement from chapter leaders and other families.

How do you suggest presenting your story?

I don’t sugarcoat it – I just met with my state senator recently, and I told her – I can’t die not knowing that the supports will be in place for Kandi. I’ve worked too hard for it to all go away when I’m not here. Right now, she’s in a good place, living in a townhome, with some supports, and has supported employment in the community. But what does the future hold for her if public policy decisions change the way the money flows?

I’ve been doing this for many years, and I still write out what I want to say, and I practice. I may only get 10 minutes with that important person, and I’m going to make an impact. I tell them about our lives and why these supports are so important. I want them to understand and remember that our lives are impacted by their policy decisions.

What else do you think makes an impact?

I’ve also dug into the dollar and cents of what Kandi receives, to demonstrate that the investment is going a long way to her independence. I contacted our Division of Developmental Disabilities office in Arizona to get the dollars for Kandi’s supports. I had them break it down between federal and state dollars and type of support. Kandi has support in her house and supported employment supports at work. I then took those numbers down to what the state and feds pay a day so Kandi can have a real life in the community. I compared the cost to more restrictive settings and it is so much less money!

What do you do to develop a relationship with your elected officials?

It begins by visiting with them. I take notes about my interactions with public officials. Thank them for what they’ve done right. The disability community is thrilled with the passage of the ABLE Act. And it was the most bipartisan thing Washington has done in a long time! You have allies where you least expect it.

Any final thoughts to share?

Families can’t wait for the crisis to think about the future. It blows my mind how many people with disabilities the same age range as Kandi, whose families haven’t considered what’s going to happen when they die. The Arc’s Center on Future Planning is going to be a great resource to them, and so will their local and state chapters of The Arc. These families need to face reality – so much has changed for people with I/DD in society. We can’t go backwards, and they’ve got to step up.

Fatherhood: How Zachary Shapes My Life

Zachary and RayRay Morris is a father of two – Zachary and Tyler. Zachary, his 27 year old son, has intellectual and developmental disabilities. Ray is the founder of Dads 4 Special Kids, a member of The Arizona Developmental Disability Planning Council and an Engineer/Paramedic with the Scottsdale Fire Department. This Father’s Day, we chatted with Ray about what it means to be Zachary’s dad and how Dads 4 Special Kids plays an important role in his life.

For you, what does it mean to be a father of a son with a significant disability?

I am blessed to be Zachary’s father, he’s the right son for me and I’m the right dad for him. It doesn’t mean things are perfect but we’re both growing. We share a special and unique bond that enables us to have a deeper love. Zachary didn’t do the typical things that a child does like play baseball or football. I had to learn his value system and what’s important to him. When I go into his room in the morning and he sits up and looks up or when he lays his head onto my shoulder and just relaxes, I know that he is happy by the way he responds to me and embraces me in his style. It is a privilege and honor to receive his love.

Society gets locked into the importance of being the mom or dad of an NBA player. That’s wrong. It is the relationship between the dad and the child that’s important. When you have a child with special needs, it’s not about the accomplishments of the child or about what he is going to do. It’s an unconditional love for each other no matter what and supporting your child to live life to their level.

Did you always feel that way?

No, I went through a period of adjustment between what my life had been and the future vision I had for Zachary. Reality wrote another script. Zachary was born with a rare brain disorder and began having seizures around age four. I had to deal with my own shock and grief in my way. I had to learn to identify how I felt about Zach, how I felt about this new life, and take ownership of those feelings. Kelly my wife had to do the same, then we could help support each other deal the emotions.

Do you have other children?

Zachary is 27, and my other son Tyler is 25. Being Zachary’s father, I am very mindful of Tyler’s feelings and his upbringing. As Zachary’s sibling, I’m witnessing Tyler becoming a man with a great sense of compassion for others that accepts the individual not just the physical attributes.

How else has your life changed since Zachary was born?

Before Zachary was born, I used to love adventure racing. However, training for those events took too much time away from my family. Although that chapter of my life has closed, I am fully aware that self-care is important and I am now involved in recreational soccer. It takes less time away from my family and I can play in an adult soccer league with Tyler. I value my relationship with my wife, Zach and Tyler. I’ve learned that I can’t make them happy. However, I can be involved in the things that are important to them and support their happiness.

How has your wife supported you on this journey?

Kelly, my wife, wants to support me, but we deal with our emotions differently. It’s like my wife has a PhD in emotional expression, and I am in grammar school. We’ve had some challenges learning how to express and listen to each other’s emotions. It’s also challenging not to take ownership of each other’s emotions. Thanks to Kelly’s support, I wouldn’t be the husband, father, and man that I am today.

Tell us about Dads 4 Special Kids.

Dads 4 Special Kids is a support group for fathers. We have monthly meetings where dads can come together to talk. We also have one meeting that includes breakfast. Dads can bring their kids and not worry about how others will react if the kids start acting up. We also host marriage support and Resilient Relationship workshops. Another focus of the group is emergency preparedness planning in the family. I am a firefighter, so I know the importance of planning and informing the fire department of what will be needed before an event occurs.

The Arc recently launched the Center for Future Planning. What role do you see Dads 4 Special Kids playing as you plan for Zachary’s future?

My son Tyler has agreed to be a co-guardian of Zachary’s when my wife and I can no longer provide support. Tyler doesn’t know the ins and outs of the disability system. I want Dads 4 Special Kids (D4SK) to come alongside Tyler and help him support Zachary. D4SK aims to be an organization that will come along side dads who have children with special needs and walk with them through each stage of life. Our hope is that our experiences as fathers will better prepare new fathers who are beginning the journey.

Do you have any final thoughts for dads on Father’s Day?

I’ll be honest – having a child with a disability is challenging for a family. I want to provide fathers with the encouragement and support they need to address these challenges. We want to help these men step up to the plate and be prepared to navigate those up and down moments. We want those fathers to know they are not alone and that this journey will be unique and rewarding.

 

We thank Ray for sharing his story with us, and we wish him a very happy Father’s Day. For more information on Dads 4 Special Kids: www.d4sk.org. For more information on The Arc’s Center for Future Planning: http://futureplanning.thearc.org.

Catching Some Waves With The Arc of the St. Johns

Andy SurfingInnovations in programming at The Arc of the St. Johns in St. Augustine, Florida, are most often driven by specific needs and interests identified by the individuals they serve. That, of course, calls for listening, understanding, and the flexibility to step outside the norm. The individuals there enjoy an active learning curriculum, with rotating classes in computer proficiency, culinary and health, structured physical education, arts and crafts, and Adult Basic Education in cooperation with the community college in St. Augustine. Children with special needs have the Therapeutic Learning Center, and young adult age 18 to 22 attend the St. Johns Community Campus, both charter schools.

Andy, a client of the chapter, has always been a curious and adventurous soul. The twenty-six year-old sees every class as a fresh and productive opportunity to experience and achieve very measurable objectives, most for the very first time. These therapeutic exercises are helping to train his hands and arms to stir a pot full of beans in Culinary Class, and to operate his own Facebook page in computer class, aided by an ocular directed mouse.

St. Augustine is an active coastal community in Northeast Florida, and The Arc of the St. Johns has seen a void as many men, women and children with intellectual and developmental disabilities (I/DD) were missing the opportunity to enjoy the ocean and connect to a caring and sharing community of avid surfers. In response to the obvious need, and the urgings of Andy and his friends, The Arc created Surf Quest, a free monthly event with trained and enthusiastic volunteers who introduce adaptive aquatic recreation using specialized surfboards and flotation devices for anyone with a disability.  The Surf Quest season opened in March 2015 and will culminate with the Black Ties and Board Shorts Awards Banquet in September.

Surf PoseAndy truly captured the hearts and attention of the entire crew of trained and experienced volunteer coaches, virtually all of whom had little or no experience or interaction with individuals with I/DD. “Andy’s Crew” found the way to get Andy into the surf and on to a surfboard for a half-dozen rides. Jordan is his ride-along, and said, “Andy’s courage and effusive enthusiasm touched all of us, and we feel the same way about every one of these guys. We’ll be here for every event.

As for Andy, he has gone back to the computer to edit his video, adding a Beach Boys soundtrack. He has also created his shopping list for new wardrobe essentials for the next Surf Quest event: Some cool Ray Ban sunglasses, a pair of wild flower-print board shorts with a matching tank top, and a big, big, fluffy towel.

Find Andy’s action video on Facebook: Surf Quest – The Arc of the St. Johns. And, visit The Arc of the St. Johns website – www.arcsj.org. Primary contact is Lynne Funcheon – lfuncheon@arcsj.org.

Summer Safety Tips

Hannah Swimming

Image via Susy Morris, used under a Creative Commons license

Co-Authored by: Vee Cecil and The Arc. Vee is a Wellness Coach, Personal Trainer, and Boot camp Instructor who lives in Kentucky with her family. Vee is passionate about studying and sharing her findings in wellness through her recently-launched website.

Summer is officially in full swing. And for many, that means spending more time outside on sunny days or trips to local pools or beaches. Swimming is a great way to fill up those summer days for many reasons. It is an excellent form of exercise and it has also been shown to have mental health benefits.

That said, any time individuals with intellectual and developmental disabilities (I/DD) are around water, extra precaution should be taken. The National Autism Association pegs drowning as one of the leading causes of death among children with autism, and as Prevention1st.org notes, children with developmental disabilities are twice as likely to suffer an unintentional injury. One factor that further endangers individuals with autism and other intellectual disabilities is that they may not immediately understand the dangers of water. Especially in the case of children with autism, they may even be drawn to it or fascinated by it. This is why it is so important that parents, caregivers, and individuals with I/DD and autism understand water safety practices. Adaptive swim lessons are given through the YMCA at various locations throughout the US. Click here to see a list of locations.

CDC’s recent issues of Vital Signs stated that the rates of melanoma, the most deadly form of skin cancer, have doubled over the last 3 decades. Applying (and remembering to reapply) sunscreen when outdoors, after getting out of the water, and especially during peak sun hours will help to prevent sunburn and furthermore skin cancer.   Sunscreen should be at least an SPF of 15 and applied on sunny as well as cloudy days.

Monitoring how much time is spent outside on hot days is also very important. Overheating, (often called heat exhaustion or in extreme cases heat stroke), can be serious if the indicators are overlooked.   Signs of heat illness that can occur when spending too much time outside can include:

  • Headache and dizziness
  • Nausea and vomiting
  • Red clammy skin
  • Not sweating when hot out (or stop sweating)
  • Seizures

If any of these symptoms are present, an individual should get out of the sun immediately and head indoors or to a shady spot. If available, a cool wet washcloth should be applied to their skin to help bring down their body temperature. To help prevent overheating make sure to drink plenty of water before, during, and after spending time outside. When planning outdoor events, keep in mind that the sun is at its hottest between 10am and 4pm, so having spots where individuals can go inside to cool down or seek some shade is vital.

Making sure those you care for are well informed about how to stay safe in the sun and near water this summer is essential. The Arc’s HealthMeet project has developed Water Safety, Sun Safety, and Heat Sickness flyers to post in and around your organization to help teach and reinforce these important lessons.

On Mother’s Day – A Conversation with Mom and Board Member of The Arc, Kelly Piacenti

Kelly Piacenti with son and daughterKelly Piacenti is a mom to four – Allie, Olivia, Nick, and Frankie. Kelly is the Assistant Vice President, MetLife Center for Special Needs Planning, and a member of The Arc’s national board of directors. This Mother’s Day, we caught up with Kelly about what being a mom of a child with significant disabilities means to her, and how The Arc is a part of her life.

How did you and your family get to know The Arc?

Back in college, I worked in a group home in Massachusetts. I was going to school to become a social worker, and for four years I worked with people with intellectual and developmental disabilities. I used to take those individuals to activities run by The Arc. So I knew about The Arc long before I had Nick.

When Nick was born, they told us to expect him to live a few months. Then they said to set our sights on 2. On January 7th, my Nick turned 14. He has defied the experts.

In my line of work, I travel all over the country and I get to see what chapters of The Arc are doing. Most recently, I visited The Arc of Hawaii and The Arc of Anchorage.

What does it mean to be a mom of a child with very significant disability?

I thought I had it all before Nick – two kids, a house, both my husband and I had great careers – but Nick really put life into perspective. For a while, you feel like everything is falling apart – but then we woke up, and realized what Nick gives us.

Nick’s smile means a whole lot more than many people’s words. He gives us the ability to focus in on what’s important. I just want all my kids to be happy and I want to provide them a good quality of life. The things I worried about before – spills on the rug, getting someone to soccer on time – I don’t worry about now. Nick has taught me more than I’ve taught anyone else as a mom.

As a member of The Arc’s national board, I’m all about the people with I/DD and the families that don’t feel like they have a voice. There’s a core group that just need support – information, a way to talk to each other, a connection.

My family is very fortunate. I’m there on the board to advocate for people like Nick that don’t have the resources, time, or energy to fight for what they need. Before Nick came into our lives, I didn’t have this in me – Nick gave me this ability, this drive.

What type of support do you receive from The Arc and from others in your family and community?

I’m a member of my local chapter, The Arc Morris in Morris Plains, New Jersey. I’m involved because I get so much information from The Arc locally and nationally. Nick doesn’t get services from my chapter – he may never – but it’s valuable to my family because of the depth and breadth of knowledge within The Arc’s network. I read The Arc’s website because I know it’s a fantastic source of information on all kinds of topics out there. I respond to their Action Alerts because while Nick may not be receiving the services in jeopardy now, he may down the line.

When families of children with significant disabilities call me, they crave information. I tell them The Arc’s website is the place to go.

What support would you like to receive that you aren’t receiving — how can we at The Arc do better to include people with the most significant disabilities and their moms and families in our work and our lives?

I talk to a lot of families with family members with significant disabilities in my role with The Arc and my career at MetLife. Many of them discount organizations like The Arc because they don’t utilize the services they provide. But they also need information, and a connection – and The Arc provides that.

I think we need an online place to communicate – a blog or forum where families can talk to each other. For those of us who are parents of children with significant disabilities, it’s all about the quality of life and seeing what’s out there. We need to connect and we can lean on The Arc’s expertise. From The Arc, I follow what’s going on with states setting up ABLE accounts, where there could be sibling group opportunities for my other kids – it’s about seeing what’s out there for us.

The Arc can and should capture the interest and engagement of all families. Do we know who is on our site at 2am looking for information, but may not be connected to a chapter? We don’t – and we should be reaching those people and engaging them.

I think all families can get involved with our advocacy work. Our Action Center is full of information to educate yourself about the policy issues that impact all people with I/DD. It’s just a matter of making those connections to these silent families.

GTO Cadets: A Law Enforcement Internship Program for Young Adults with Disabilities

NCCJD Promising Program Spotlight

GTO Cadets

Chief Chris Perkins, Tyler Caldwell, Cody Light, Joshua Leonard, Officer Travis Akins, Nicholas Medovich

By Officer Travis Akins

On November 10, 2014, the Roanoke Police Department held a press conference to officially launch GTO CADETS—“Grow Through Opportunity.” The GTO CADETS program allows young adults with disabilities to intern within the department. Cadets grow their professional skills and round out their resumes, and simultaneously provide law enforcement officers with coworkers with disabilities.

Officer Travis Akins worked closely with Chief Perkins to incorporate GTO CADETS into department life, establishing an internal policy and volunteer application process. The inaugural class included three young adults with Autism Spectrum Disorders and one with Down syndrome. A professional job coach, contracted through the Commonwealth of Virginia’s Department of Aging and Rehabilitative Services (DARS), is on site Monday through Friday to ensure GTO CADETS get the most out of their time with the department.

What exactly are GTO CADETS doing with their day?
After being outfitted with custom-designed GTO CADET uniforms—including badges—cadets complete tasks such as filing documents, shredding papers, copying and folding safety brochures, and providing department tours. Working up to 12 hours a week, each cadet receives assignments that play to their strengths. For example, one young man with autism disseminates daily assigned patrol vehicle keys to officers beginning their shifts. The position—which did not exist before the program—requires officers and detectives to sign for their patrol keys, ultimately both enhancing accountability and forcing interaction between officers and cadets.

GTO CADETS are also provided high community exposure. They assist the department with crime prevention presentations; role playing, co-training and molding the minds of young recruits in the police academy; acting as “McGruff the Crime Dog” for Senior Centers and elementary schools; changing Project Lifesaver transmitter batteries and bands on individuals with cognitive impairments who may wander; and riding in police vehicles in Christmas Parades and other popular events—in short, they act as a new face of law enforcement. Recently, a GTO CADET with Down syndrome co-presented with the Police Chief at a Bar Association luncheon. The cadet was responsible for the portion of the presentation focusing on the GTO CADET initiative.

Finally, each GTO CADET shift ends with 30 minutes of cardiovascular training in the department’s fitness facility.

GTO Cadets

Joshua Leonard and Tyler Caldwell

Testimonials
Officers in the department have noticed preconceived perceptions morphing into positive interactions, empathy, and camaraderie. Police personnel expect to see the GTO CADETS around the building and look forward to daily interactions—many employees see the GTO CADETS as the highlight of their week! The Department is now totally committed to an inclusive work place, and increasing job, life, and social skills for young adults with disabilities.

Officer Travis Akins, a contributing author for this blog, says, “As a sworn law enforcement officer in the Commonwealth of Virginia, I firmly believe our criminal justice system desperately needs to develop creative programs nationwide, specific to individuals with disabilities. All human beings, regardless of their unique challenges, deserve a fair and equitable opportunity to enhance their own quality of life. Every person fully deserves the opportunity to be active, engaged, informed, and included, regardless of ability. Recognizing such, our department created a truly innovative program specific to individuals with disabilities!”

For assistance implementing the GTO CADETS program, e-mail Officer Travis Akins at GTOcadets@gmail.com or call at (540) 632-7326. Follow and Like GTO CADETS on Facebook.

Building Vocational Success at The Arc of Carroll County

April is Autism Acceptance Month, and in honor of the launch of The Arc’s new initiative TalentScout, we at The Arc of Carroll County wanted to highlight some of the programs we are implementing to improve the lives of people with intellectual and developmental disabilities (I/DD) in the workforce.

 

Preparing for Success

The Arc of Carroll CountyFor the past 16 years, The Arc of Carroll County has had several educational partnerships to provide support to high school students and students in the Post-Secondary Program. One of these is VOICE, which teaches how to work with others, understanding the role of a job coach, and employer expectations. Another, TCP, focuses on the school-to-work transition and consists of locating job leads, filling out applications, interviewing, and being independent on the job.

Over the summer, we offer the Summer Youth Employment program for eligible high school and post-secondary participants. Through the program, participants have the opportunity to work in community businesses over the summer with the support of a job coach. This is paid employment, and plans are person-centered to identify unique supports for each person served.

A service we offer specifically for adults on the spectrum is Job Hunters. Coursework covers developing job skills, cover letter and resume writing, dressing for success, and other abilities. While the class itself is 10 weeks, it doesn’t end there! After the course is done, we continue to work with you until you become successfully employed. Last year, we successfully helped a student named Conner develop his skills and secure a job at the Westminster Home Goods for the holiday season. Now, Conner has made huge strides (all the way across the world!) and is residing in Japan looking for work teaching English to Japanese students.

 

Continued Support

The services don’t stop once someone has found employment. If specialized skills are required, we provide customized training to meet individualized employer needs. Program Coordinators and Employment specialists continue to work with individuals to liaise between the employee and employer to optimize vocational success.

Our Vocational Program, which follows a Place-Train-Maintain model, provides support, instruction, training, and supervision if necessary to maximize independence in the workplace. Some of the ways we do this are through job sampling, shadowing, and enclaves. One of the most unique parts of this program is Supported Enterprise, which assists individuals who are interested in starting their own small business through developing business plans and identifying funding sources. Our hope is that these participants may one day end up at Entrepreneur Alley during The Arc’s National Convention.

We believe that everyone has a right to meaningful and gainful employment, and that community services through The Arc’s chapters are a paramount tool in achieving this.

Autism Acceptance – Accept Me, Not A Label

Amy Goodman

Amy Goodman

Autism is not something to be feared, nor is it solely defined by medical jargon or categories. It needs to be accepted as the way an individual thinks, feels, and expresses themselves; nothing more, nothing less. An individual who happens to have a diagnosis needs to be accepted as a human being first and foremost. The expression of their autism may come in many forms and whatever that may look like, it needs to be accepted as part of the person and part of what motivates them.

If we start by accepting autism as part of the person and not let their autism be what defines them, then we can be free to be who we want to be. I have taken on the challenge and embraced my autism. I do not let it run my life; therefore, I have broken some barriers and set an example that individuals on the autism spectrum can be accepted for who they are and what they can contribute to society. Let’s celebrate not only acceptance but that autism is not a disability but differently abled. Think positive and find unique solutions to problems, always remember this; there is more than one way to do things and no one correct way to do something. By accepting autism, individuals are embracing and empowering themselves to be who they always knew they would be.

Ever since my diagnosis, in my mid 30’s, I have learned so much about myself and how it is possible to influence others just by being there and listening. Sharing my story has made such a difference in my life and now I have a new found talent that I would like to tell others about. As part of my job as Director of Autism Now, I was a contributor for Talent Scout, our toolkit for employers, that reflects the opinions and voices of people on the spectrum. I will also be available to do consulting services as well. That will include such things as being a public speaker at conferences, giving presentations, being a leader in the autism community, as well as telephone or e-mail consultations. For more information on that I can always be found at agoodman@autismnow.org, info@autismnow.org, or 202-600-3489.

Acceptance is what it’s all about – accepting someone for who they are, for the difference they can make in someone’s life, and accepting them as a human being first. Always a person first and never a label or diagnosis; don’t fix what isn’t broken, let the person with autism tell you what they need and want, and always let them make their own choices for themselves. That’s what it means to accept autism, being free and being me.

 

Amy Goodman, M.A.

Amy Goodman is currently the Director of Autism Now at The Arc of the United States. She has an undergraduate degree in Early Childhood Education and a Master’s degree in Special Education with a minor in autism. She is an individual on the autism spectrum who enjoys helping others to understand what it is like to live with a developmental disability and has a passion for helping others in their journeys with their children with unique abilities to live life to the fullest as independently as possible. She likes to be a self-advocate and fight for the rights of individuals with intellectual and developmental disabilities as time permits. She also has a passion for reading, crossword puzzles, square dancing, and parrots and owls.

When We Move Forward Together, Anything Can Happen

This is a guest blog post by Mardra Sikora.

A few years ago, my son and I sat backstage during the Broadway Across America national tour performance of Mary Poppins. The cast sang, “Anything Can Happen, if You Let it,” and danced across the stage exuberantly pursuing their point. I believed them, because Marcus would soon be on stage singing right alongside them. This was in 2011 and the opportunity came from an auctioned event. Since then, his ambition to write his own musical and perform on stage has continued to grow. In fact after telling one actor at a community theater that he wanted to play the leading role, that actor reminded Marcus of the quote, “The greatest of journeys starts with a single step.”

The Next Step

MarcusMarcus keeps taking steps. His latest endeavors have netted a short play which is being produced this month at a local public high school. The show is called “Cassie Through the Closet Door.” The role of Cassie was inspired by an actress who Marcus worked with while participating in a project called the Art of Imagination. A program developed by our local chapter of The Arc, the Ollie Webb Center. Marcus has taken beginning acting classes through this program and hopes to move on to advance acting and then classes within the community next. These classes teach craft and understanding theater, but his innate talent is as a storyteller. Coming up next is the release of his children’s book entitled Black Day: The monster rock band, with a read along animated short to follow on DVD this fall.

Dreams Take a Village

There are still some who can’t believe what Marcus can achieve, but frankly Marcus doesn’t care what they think. That is perhaps one key to his continued ambition and potential for success. But it’s more than that, it’s also a community, a team effort. Ask any Olympian if they did it alone. There’s a reason award acceptance speeches are so long, the list of “Thank You’s” include many supporters within their community. Many people have to come together to teach, support, encourage, and enable anyone to reach their dreams.

Menschen cardMarcus also has some great role models breaking the social barriers. Connor Long, is one example of a young adult self-advocate who is following his acting aspirations. He’s already received accolades and awards for his role in the live action short Menschen. Which The Arc is sponsoring shows in cities across the country. The most recent list is at the end of this review, check back for updates. (Be sure to talk to your local arc to bring the show to your town.) Connor is busy with local theater at events and is also in production of his next film project, Learning to Drive, another example of a writer-director with a personal story to tell.

These two young men are just the tip of the iceberg, there are so many self-advocates taking steps to achieve their dreams. With their actions they are teaching communities, and because our communities are growing more inclusive, they continue to move forward. Let us all keep moving forward together, sharing, teaching, and learning that together, “Anything Can Happen, if You Let it!”

Bio: Mardra Sikora believes in the power of words and uses both fiction and non-fiction to advocate for and with her adult son Marcus. You can find her and Marcus on the blog Grown Ups and Downs, Facebook and Twitter as well as on various blog networks including The Huffington Post.

How to Make the Most of This Year’s National Convention

2014 Convention ArtworkMy name is Jill Egle, and as a self-advocate ambassador of The Arc, I enjoy welcoming new attendees to the annual convention. This year is extra special because it is being hosted in my very own hometown of New Orleans, Louisiana. The Big Easy, as they like to call it!

As someone who has attended The Arc’s National Convention in the past, I like to offer new attendees some tips on how to make the most of the convention. Some of my favorite things to do at the convention are to check out Entrepreneur Alley and The Arc Store. Entrepreneur Alley is where other self-advocates showcase their businesses and products. And The Arc Store is a great place to pick up new gear and gadgets. I also recommend you come to my session, on September 30th, from 2-3 pm, as well as the Self-Advocate Symposium that’s being held on Wednesday, October 1st, from 9:00 am until 12:00 pm.

There is a lot of information to take in and a lot of events and programs to sign up for. Some general tips for attending the national convention are:

  • Stay safe and be aware of your surroundings
  • Let others know where you are going
  • Keep your cell phone handy at all times
  • Always keep your bag or backpack close and closed. Keep your wallet or purse zipped up

With this year’s convention being held in New Orleans, you’re definitely going to want to go sightseeing, check out cool places to eat, and do some shopping. One of my favorite things to do is just walk around New Orleans. You could view the old mansions on St. Charles Ave or hop on a street car and go to Audubon Park and see the zoo. There are also several tours you can take part in:

And when you’re looking for good food and a fun time, I suggest heading to Mulates! Besides providing tourists (and locals) the best of New Orleans, Mulates also employs members from a local chapter of The Arc! It’s easy to get caught up in the excitement of being in a new city and attending the convention, but it’s better to be smart about where you’re going and what you’re doing. As you’re out, enjoying the nightlife of NOLA, remember to pay attention to where you are and always be alert.

If you follow these few tips, you’ll have a great time in New Orleans and at the convention.

Take care and enjoy NOLA!

Jill Egle