More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled, or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. Family caregivers are the foundation of long-term care nationwide, exceeding Medicaid long-term care spending in all states. National Alliance for Caregiving and Evercare. March 2009
While most siblings don’t think of themselves as caregivers for their sisters and brothers with disabilities, it is one of the many roles they play, whether they are children or adults. Sisters especially play a huge role throughout their lives in providing care, companionship, and other needs of their siblings with disabilities, sometimes even from long distance.
“My sister doesn’t live with me but we have a routine that every night I call her and read her a story,” explained Barb Wentzel in a recent Sibling Panel discussion.
Siblings also recognize and value the need for paid caregivers to provide respite for their parents who may be doing the bulk of the caregiving. “It is important that parents receive respite care so they are able to pursue things that are important to them and spend time with their other children.” stated Christiana Yablonowski in her recent Sibling’s Choice nomination to honor Todd Steven & Associates for providing care and community support for her brother. READ MORE ABOUT SIBLING’S CHOICE AWARD WINNERS
APPLETON, WI—If you take a close look at Harriet Redman you will realize she is a woman of incredible wisdom and strength. This is first and foremost because she raised a son born in 1992 with a rare chromosomal abnormality that affected Phillip’s ability to walk, speak, and meet many developmental milestones. Harriet and her family, which included older sibling Christiana, were determined that Phillip be an involved and included member of the family and one day, while playing their special version of soccer, Christiana vocalized a very adult thought for a seven year old: “What will happen one day when you and Daddy die?”
It’s a question many siblings of special needs kids will have, but fear to express, and it led to the founding of the non-profit organization WisconSibs (which happened officially in 1998.) Since then, this noteworthy organization has continued to grow, launch or partner in programs, and provide the circle of support that is so vital to the siblings of children diagnosed with conditions. When a child has a mental, medical, genetic or developmental diagnosis, it disrupts the family–their time, budgets, attention, energy, sleep, careers, etc. Siblings, although they love to help, can experience guilt or short-term resentment. With the support of an organization like WisconSibs, which provides help across Wisconsin, siblings learn to develop resiliency, natural leadership skills, and coping strategies. Most importantly, Harriet says, they realize they are not the only ones in this crazy position, and that’s utterly empowering.
WisconSibs provides many different programs that help children ages 6 to 12 to feel supported, talk about their roles, face doubts, and learn what to expect as both siblings grow into adults. One of those programs is Sibshop, an award-winning workshop that was first launched by Don Meyer in Seattle, Washington. They also run summer camp programs, both day and sleepover, where siblings discuss concerns and joys while having fun, engaging in recreation, and getting the respite time that is important to everyone in the family. WisconSibs also engages families in activities that help create awareness or raise funds such as the Sibs are My Peeps contest which recreates family engagement using the marshmallow candies. Recently, they began to test a new program geared to siblings from ages 3 to 5, so they can learn to understand and express what happens in their families.
In her radio show, Harriet is going to talk about these various programs, how and why her organization was founded, and home in on the crucial role that siblings have when someone in the family has an illness or disability. She will also stress how important it is for society and service providers to embrace the needs of the sibling (and not just the client or parents ) We salute her for her brave efforts and look forward to learning all she has to share–including how motivated people can donate to this wonderful non-profit!
My name is Samantha Merkel and I’m one of the WisconSibs summer interns for 2019. I really became a part of WisconSibs about five summers ago when I first became a counselor at SibDays of Summer. Since then I have continued to develop as a young leader with the support of WisconSibs programs.
My inspiration for everything I do comes from my 11-year-old brother, Aaron, who was born with Down syndrome. Because of his diagnosis, I have found myself a part of a unique and amazing community that includes the remarkable people of WisconSibs. In addition to my involvement with WisconSibs I am an active member of the Down Syndrome Association of Wisconsin- Fox Cities Walk Committee, I am working part-time for the Down Syndrome Association of Wisconsin- Family Services, and I am providing respite care for two sisters with Down syndrome, ages 12 and 14. This is, of course, in addition to my volunteer work as well as spending time with my family. In terms of schooling, I will be a junior at UW-Stevens Point this fall studying Communicative Sciences and Disorders for Speech Language Pathology with a minor in Spanish. During the academic year, I work in the Disability and Assistive Technology Center on campus.
I feel as though this internship is an amazing opportunity for me to gain relevant experiences, make connections, learn leadership skills, and to make a difference. I’m really looking forward to all the things that the people at WisconSibs have to teach me and the ways that planning for their events will help me to develop as a leader within my own life. I am also excited to work for an organization that helps a group of individuals that I am directly a part of and understand their need for resources and support. Given that I intend to work with individuals with disabilities within my career I feel that making connections with their siblings and their needs is a very integral part in ensuring the success of my future clients. Siblings are often some of the most important advocates in the lives of individuals with disabilities and I believe that investing in them leads to the achievements of their siblings with disabilities.
As the summer goes on I will be helping plan various fundraising, awareness, and leadership events to help benefit the siblings of individuals with disabilities within our community. I am so excited to be a part of the WisconSibs team!
Hello! My name is Calli Hughes and I’m the other WisconSibs summer interns. I just finished my Sophomore year at UW-Madison where I am studying Math and Community & Nonprofit Leadership. With aspirations to someday work in the nonprofit sector, WisconSibs seemed like a perfect fit! While WisconSibs is new to me, I already understand the great impact it makes on the community they serve. As someone who wants to explore the nonprofit sector and who is a sibling myself, WisconSibs seemed like a great opportunity to connect with a unique community.
Having a sibling with a disability, I have never really had the opportunity to connect with siblings, like myself in my town or at Madison. My brother, Dane, is Deaf and qualifies for blind services. He also has undiagnosed physical and cognitive impairments. As one of my best friends, Dane has been my inspiration for so much of my life. He is the reason I am who I am today.
While at WisconSibs, I will be focusing my time on the website, social media, and marketing. I hope to expand the reach that WisconSibs makes statewide so that more siblings can become knowledgable about their support. I hope to learn from fellow siblings about their experiences as well as just gain a deeper appreciation for WisconSibs and the community they serve!
WisconSibs Teen Sib Leaders were honored with the Fox Cities Youth Alliance volunteer group of the year award. The hours of volunteerism these young leaders have devoted has made a large impact! These young leaders represent the often untold stories of so many, many siblings who take on adversity and become resilient, courageous, compassionate, and wise leaders. Embrace your strength. Never apologize for not accepting things the way they are. Hold on to one another as you overcome barriers for yourself, your siblings with disabilities, and others who go unnoticed or unregarded. Lead. Thrive. Celebrate.