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Celebrating National Sibling Day With My Brother

/in /by The Arc

By Kim Keprios, member of The Arc’s National Sibling Council and the Sibling Leadership Network

My brother Mike, “Kep” as I affectionately call him, is a man of tradition. As a family we are bound together by Kep’s desire to celebrate every Hallmark Greeting Card holiday ever invented. Add the National Sibling Day to our list of gatherings on the calendar that we will joyfully honor as a family this spring! National Sibling Day celebrates the unique bond between people with intellectual and developmental disabilities and their brothers and sisters.

The Anchor

Mike has always brought our family together. He keeps us laughing, grounded, grateful and humble. Although he has a significant disability, Kep has been the anchor in our family. On rare occasions I have felt like he is a weight that ties me down when I yearn for the freedom to “leave home,” but mostly he is an anchor in the best sense of the word.

Kep led me to a career path I may otherwise never have pursued, or been afforded the opportunities I have had through my 30 years with The Arc Greater Twin Cities. At the core he is behind the passion and sense of urgency I bring to my work in advocacy with people with intellectual and developmental disabilities and their families.

Mike’s Little Sister

Now my beloved brother and I are on the official AARP membership rolls. Together we are experiencing the painful realities of getting older. Our dad died last September. The hole in my heart is huge, but it is magnified as I watch Kep struggle with the loss of “Daddy George.” At times he says quite calmly, “Daddy George is not here — he is in heaven.” But then there are the times when Kep is anxious, sad and announces “Oh, I miss Daddy so much.” As usual, he says it like it is — his grief is front and center.

For 55 years as Mike’s “little sister,” he has been teaching me how to live life — all of it. Our April family gatherings will reflect the joys and sorrows that come with a rich life – missing dad at our traditional Easter brunch, and celebrating National Sibling Day. My big brother will guide me through both with a grateful heart!

Kim Keprios is a member of The Arc’s National Sibling Council and the Sibling Leadership Network. She has developed and implemented programs for kids and adults who are sibling of people with intellectual and developmental disabilities at The Arc Greater Twin Cities since 1990. Her brother, Michael George (Kep) Keprios, was born in 1955 without eyes with a diagnosis of severe intellectual and developmental disabilities. Advised by doctors to institutionalize Mike, his parents George and Dodie ignored the counsel and brought Mike home to be raised with his siblings. Today, the man who doctors said “would likely never walk or talk” loves to dance, works at Old Chicago Pizza, volunteers at The Arc’s Value Village Thrift Stores, enjoys going to church and loves Country Western concerts.

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Half a World Away But So Close

/in /by Guest Blogger

By Amberley Romo, sibling of an individual with IDD and student in China

I’m currently halfway across the world from my sister Caroline studying the Chinese language in Beijing. But I’ve never felt closer to understanding her than I do right now; I can’t believe I had to come all the way to China to understand just a little bit better what every day is like for her.

Incredibly Unique

My sister is incredibly unique; She is almost always infectiously excited and happy, and has a dynamic personality that lights up any room. She is obsessed with dogs, adores babies and her favorite thing in the world is cooking with our mom. She also has a genetic disorder called Angelman Syndrome. Caroline is essentially nonverbal, but like most people with Angelman Syndrome, her intelligence and understanding of what’s going on far surpasses her ability to communicate about it. She is astoundingly emotionally attuned.

Outside of our family and close friends, who understand Caroline’s modified sign language and body language, Caroline has never been able to effectively communicate with strangers without the aid of a communication device. It’s gotten better through the years: We’ve gone from Boardmaker laminated squares with Velcro on the back, to a dinosaur-sized DynaVox augmentative communication device, to the Proloquo2Go app on an IPad.

A New Perspective

I began to see things from Caroline’s perspective when I signed a pledge to speak only Chinese from Monday through Friday for my language immersion program.

I’ll be frank: I’m not exactly fluent. (I started learning eight months ago.) All of a sudden day-to-day interactions such as ordering from a menu and asking directions can induce a panic attack. I’m very aware of how much attention and help I need, especially when there is a line of people behind me waiting for something; I feel guilty. And the pressure of the expectant look on the face of the person who’s waiting for me to ‘get it’ only makes me shut down more.

“I have an Easy Button”

And that’s just the beginning. What’s most frustrating about being limited to only Chinese isn’t that Chinese is difficult (although it certainly is!), it’s suddenly having difficulty expressing the deeper thoughts and complex feelings and needs with the ease to which I am accustomed in English. Every thought-expression is a conscious process, if not always a linguistic battle.

The first time I felt the ‘shut down’ moment I was trying to have a conversation in Chinese with my roommate. I got to the point where I just wanted to put my face in my hands and block her out. At that moment, I had an extreme sense of déjà vu. With Caroline, if something got too hard or too frustrating, she would put her face in her hands to shut us out. The realization felt like being backhanded; before I even realized the connection I had made, I felt like crying.

But ultimately, I do have an “easy-button.” I can simply opt-out of the language pledge. For Caroline, there is no “opting out.” Even though I have a deeper understanding, I can never know what it’s like to not have that escape hatch, and I have so much more appreciation for her efforts.

Amberley Romo, 21, is a recent graduate of American University and worked for The Arc’s Washington, D.C. office as an intern and brand coordinator. She is currently enrolled in a language immersion program in Beijing, China. She is also a member of The Arc as a sibling and a supporter of the movement for people with intellectual and developmental disabilities. The Arc recently launched a National Sibling Council and has partnered with the Sibling Leadership Network to engage people like Amberley as they face the unique challenges and rewards that come from being a sibling of someone with IDD.

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Martha and Me

/in /by Guest Blogger

By Nancy Webster, Vice President of the Board of Directors of The Arc of the United States.

Being a sibling of a person with an intellectual or developmental disability (IDD) is interesting, funny, frustrating, proud, challenging, loving and respectful. A long-lasting relationship that adapts and evolves, it’s a partnership that not everyone understands. But other siblings do.

In any family, brothers and sisters often think of themselves and each other very differently from the ways parents do. Even when we were young, I could usually convince my parents to let Martha try something they were worried that she could not do by telling them that I would do it with her. It was my belief in her that gave her the courage to learn how to swim, climb up the slide and care for her prosthesis. Today, when Martha wants to try something, we team up to figure out how to tell and show others, “here’s how it can work.” We know we’re stronger together, and so together we have learned advocacy. Martha calls us “the sister team.”

“Martha inspires me in many ways and we are a wonderful and strong team.”

I often think how wonderful it would have been for us to grow up knowing other siblings. How amazing it would have been to hear another sibling’s stories – to learn how to manage something differently, to share anger, to boast of an achievement that to my friends might seem trivial, but another sibling knows the triumph.

Frequently I talk with adult siblings whose parents are aging and are now facing the challenge of learning all of the intricacies of supporting his or her sibling. In the interest of “protecting” them, their parents have not shared information. Where can they turn for guidance and support? The Arc’s National Sibling Council is a welcoming network that identifies with siblings and helps them connect with other siblings to share information and experience. It is exciting to think that I can call someone and ask “how did you know how to….?” “What can we do about…?”

This is an opportunity to connect and improve the lives of future siblings and make their paths less daunting. I’m thrilled to share Martha’s and my story, and I hope you join me on The Arc’s National Sibling Council.

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The Arc Announces Major Initiatives for Siblings of People With Intellectual and Developmental Disabilities

/in /by The Arc

Washington, DC – The Arc of the United States is building on the foundation of the organization, founded by families over 60 years ago, by announcing two major initiatives for siblings of people with intellectual and developmental disabilities (IDD) – a new partnership with the national Sibling Leadership Network (SLN), and the formation of The Arc’s National Sibling Council.

The leadership and active involvement of siblings is critical to ensuring the full inclusion and participation of their loved ones in all aspects of community life. These exciting new initiatives seek to connect siblings as an important segment of the disability movement to impact policy, service delivery, and the quality of life for the millions of Americans with IDD. The Arc’s new sibling initiatives will also provide the necessary support to siblings who are looking for resources and answers to questions unique to them and their family’s future.

“Families, including siblings, built The Arc into what it is today, and these initiatives build upon their decades-long work in the disability movement. Siblings don’t always recognize their own unique ability to impact their loved one’s life, and the lives of millions of other siblings just like them across the country, just by banding together, supporting each other, and speaking up,” said Peter V. Berns, Chief Executive Officer of The Arc.

Berns added: “There is a tremendous opportunity in communities throughout the country to harness the power of siblings as advocates, working hand-in-hand with their brothers and sisters with IDD, as a force for change. Siblings are a critical part of the movement to protect the rights of people with IDD to be included in society.”

Founded in 2007, the mission of the SLN is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families. Under this new partnership, the two organizations will develop and offer dedicated programming for siblings at The Arc’s National Convention and other events, including distance learning based programs on topics of interest to siblings, volunteers and professionals of The Arc on sibling issues. They will also create networking opportunities for siblings using social media tools, support the development of sibling services at state and local chapters of The Arc, and work to establish state and local chapters of the SLN.

“Siblings represent the longest lasting relationship many experience. As we age, siblings who were once rivals grow closer and we come to rely on each other for essential support, particularly as parents age. Through our partnership with The Arc, we believe that we can make a difference in the long term natural supports of people with disabilities by providing their brothers and sisters the information they need through welcoming communities. By getting siblings involved in the game earlier and more often, we think it can allow siblings and people with disabilities to have more control over the involvement of family in support across the lifespan,” said John Kramer, Sibling and Chair of The Sibling Leadership Network.

Born out of this partnership will be the creation of The Arc’s National Sibling Council. This new initiative of The Arc will offer opportunities for networking and support to siblings and their families, build a broad network of siblings that support the advocacy and programmatic efforts of The Arc at all levels, offer leadership development and training through involvement in standing and ad hoc committees and task forces of The Arc, and provide face-to-face and online networking and social opportunities. In addition, The Council will be a place that siblings of individuals with IDD that may be new to or overwhelmed by their role can turn to when they need guidance or support in situations unique to their family.

The Arc’s National Sibling Council welcomes all siblings and those who support siblings who are members of The Arc either at the local, state or national level. Those interested in becoming Contributors to the Council, by donating additional funds, will ensure the establishment and sustainability of this essential new program.

“Being a sibling of a person with IDD is interesting, funny, frustrating, proud, challenging, loving and respectful. Growing up with my sister Martha, I could usually convince my parents to let her try something they were worried that she could not do by telling them that I would do it with her. How amazing it would have been to hear another sibling’s stories – to learn how to manage something differently, to share anger, to boast of an achievement that to my friends might seem trivial, but another sibling ‘knows’ the triumph. The Sibling Leadership Network and The Arc’s National Sibling Council are welcoming networks that identify with siblings, help them connect with information and with other siblings, and learn how to partner and to advocate,” said Nancy Webster, Vice President of the National Board of The Arc of the United States and a sibling of a sister with IDD.