My Brother Kain

Today is National Siblings Day, which celebrates siblings of every stripe, everywhere. However, for people with disabilities, the sibling relationship is often quite different than what is experienced by those who have brothers and sisters without disabilities. Yes, there’s love, and yes, there’s sometimes rivalry and tension. But so often the bond seems to go far beyond what you would expect of typical siblings. Siblings of people with disabilities are frequently the ultimate protectors, caretakers and friends, with a connection not always explained by simple family ties. Guest blogger and sibling Ashley Knapp is all of those things. We thank her for choosing to give us a glimpse into the world she shares with her brother. 

 

My younger brother Kain was born when my mother was 26 weeks pregnant. He had a rough time and was on a ventilator for the first 4 weeks of his life. His lungs hadn’t had a chance to develop, and the lack of oxygen caused his Cerebral Palsy. His retinas also detached causing him to lose his vision, leaving him completely blind. He also has a rare condition called contaminated bowel syndrome.

Ashley and Kain

Ashley and Kain

My bother has had hundreds of surgeries in his lifetime, which is hard to believe. However, he still wakes up with such a huge smile on his face every single day. My mother, Erica, always tells of how although my brother is barely verbal, as soon as he wakes up he is yelling my name. We have a bond like no other, and nothing will ever be able to get in the way of that.

At 18, immediately after graduating from Belmont High School in Dayton, Ohio, I left for the United States Army to Fort Leonard Wood, Missouri for boot camp. It was one of the hardest things I had ever chosen to do in my life. I had never been away from my family before, and kept pictures of them in my bible that I got to look at during our personal time

Ashley's brother, Kain

Ashley’s brother, Kain

and before I went to sleep. It wasn’t long before I was assigned to my first duty station at Fort Drum, New York.  At nearly 10 hours away from home, it was hard being away from my brother. The first year away, I sent him a ‘record yourself’ book so he could hear my voice every night. After a few years in the military, it was time to change my life path and I returned to Dayton, Ohio, where I still currently reside. I have started pursuing my

music career. Now I get to sing to him and watch his smile, with those big dimples, whenever I want and I love it. I love my brother. We have a bond like no other, and I wouldn’t trade it for anything in the world.

Ways to Get Involved for National Siblings Day!

April 10 is National Siblings Day! The brothers and sisters of people with disabilities have unique and undeniably valuable relationships with their siblings. Here are some ways for siblings – both children and adults – can get more involved in the movement for people with disabilities and each other!  

The Sibling Leadership Network provides siblings with information, support, and tools they need to advocate with their brothers and sisters and promote issues important to them and their families. There are now over 4000 members and 19 state chapters of the Sibling Leadership Network.

The Sibling Support Project is dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The project has created Sibshops, hosts online groups for sibs, and written books on siblings’ issues.

Books:

Check out The Sibling Survival Guide: Indispensible Information for Brothers and Sisters of People with Disabilities, written by members of the Sibling Leadership Network and the Sibling Support Project. And learn about other great books for and by young and adult sibs here!

Ways to Connect:

Whether they’re kids or adults, brothers and sisters tell us that there is no substitute for connecting with others who “get it.” Here are some options for sibs across the lifespan:

Adult sibs can:

Young sibs can:

  • Participate in Sibshops, lively peer support and information programs for school-age brothers and sisters. You can learn where they are being offered here.
  • Join the SibTeen Facebook page just for teen brothers and sisters (co-hosted by the Sibling Support Project and Siblings Australia)

Remembering a Great Camper, Volunteer, Staff Member and Brother

Guest post by Bill McCool, Executive Director of UCP of Delaware

 

Petey & Mary 2

Peter Collins was a camper, volunteer and staff member for United Cerebral Palsy of Delaware’s Camp Manito.  Mary Arden Collins, who is a singer/songwriter in Los Angeles, recently produced a video about her wonderful brother Pete, who passed away in May of this year.  The video tells a great story about Pete, who found ways, both big and small, to give back to the camp and the people he loved.   

Pete started at Camp Manito when he was three years old.  His mother put him on the bus that came to pick him up at their house, but she secretly followed the bus to make sure that he was going to be ok.  It must have worked out, because for the next 35 years, Pete came to camp every summer.

Mary Arden also has her own camp memories.  As a teenager, she became one of the camp volunteers and eventually a counselor.  Mary Arden pursued a music career, but she has always been proud of her association with UCP’s Camp Manito.  When she would come back to Delaware, she would come to the camp and perform for the kids.  She and Pete, who played a bodhran drum, performed together.

Pete & Mary edit.jpg

There has always been a sense of family at UCP’s Camp Manito, probably because we have watched so many children grow up here.  As small children, they are campers; as teens, they become volunteers; as high school and college students, they become staff; as adults, they move into the community and they find ways to give back to the program and to the kids who are following after them.  And while the progression is not the same for everyone, there is a feeling of belonging and sharing that envelops all of the staff, volunteers and campers.

When Peter was too old to attend as a camper, he became one of the camp staff and then a volunteer.  His annual position here was camp receptionist.  He answered the phone, directed callers to UCP staff and took messages.  In the morning, he greeted campers and their parents when they arrived; in the afternoons, he used our public address system to call campers to the lobby when their parents came to pick them up.  He chased down staff to give them their messages.  During the off season he stayed in touch with his camp friends, calling them and talking about good times at camp, telling them he was anxious for summer’s return. He was here every June; he always came back to take care of the phones and do his job.  He was good at what he did, and he was reliable; we always knew we could count on him.

Like any charitable organization, UCP has had its up and down periods, and during one down period, UCP had to cut back the number of weeks the camp could be open from six to four weeks.  Pete made a decision that changed the course of that summer for all of the children who were here.  He donated enough money to help UCP stay open for an additional week of camp.  His love for the camp, our campers, and the work he was doing meant a great deal to Peter.  He gave his donation happily, and he was here that week doing his job as usual.  His donation meant others could enjoy what he had always enjoyed – a longer summer together with the friends they loved.

Pull together any group of adults who attended camp when they were younger and the stories you will hear will amaze you.  It’s the power of camp; it’s the power of their shared experience.  They have an appreciation for the program and a love for the people they grew up with.  Peter was that person too.  He showed his deep feelings for our children and the camp that particular summer and every summer he was here.  We lost Peter this year, but he will never be forgotten by the folks who all shared the same love he had for Camp Manito.

Please take a few moments to watch and hear the video put together by Mary Arden.  The song was written by Mary Arden and Pete was her inspiration.

Bill McCool

 In Memory of Peter Collins, by Mary Arden

 

Family Ties Ensure a Life Without Limits

The following is a guest post by Betsy Mays, 24 who has three older siblings including Blake (31), Lauren (30), and Jamie (26). Lauren has Cerebral Palsy. 

Mays Family at the Beach

Mays Family at the Beach

“My sister Lauren is one of my best friends and she has Cerebral Palsy. Growing up I don’t think I realized that there was anything too different about my sister. I knew that she couldn’t walk, but that didn’t stop my brothers and I from wheeling (or dragging) her around. I knew she couldn’t talk, but my family created a type of communication that worked for us; we are all REALLY good at 20 questions. I knew she couldn’t care for herself, but that’s what we were all there for!

I loved and still love being around my big sister at every waking moment. She is my audience when my parents or brothers couldn’t stand to watch one more of my performances. She is my go to person when I want to go swimming, and she is the one person in my family that knows all my secrets!

Mays Family PortraitGrowing up my mom always told my brothers and I that not everyone would always be as kind to my sister as we would hope or that people may stare at her because they simply didn’t understand what Cerebral Palsy is. So, being the outspoken little ball of joy that I was, I loved to educate my friends (and strangers who loved to stare) about my sisters condition! I would let everyone know that my sister wasn’t “crippled” but that she was just like everyone else, and she just so happened to have Cerebral Palsy.  My sister has always, and continues to, live a life without limits.

I remember when my siblings and I were little we would put her on a sleeping bag or a bean bag and pull her around the house so she could play with us. My brothers and I made sure to always include her, and my parents made sure that Lauren was involved in anything she wanted to! She was an excellent student, participated in school plays, Special Olympics, and and graduated with a regular high school diploma!

She loves to go to the beach, swim, and loves to be around the whole family. My nephews and niece are growing up around my sister and they love their Aunt LaLa. At such a young age they have learned that a person is not defined by a disability!

Now that we are all older, my sister has developed health problems that my family was not quite prepared for. We have never really needed any extra assistance because my sister’s health has never been an issue that we couldn’t handle on our own. Lauren was the person in our family that was virtually never sick! Thankfully my family is really close and we have great friends who continue to show us love and support, and my sister is tough as nails!

Mays Halloween

Halloween

I am thankful that my sister has always been treated with respect and compassion by everyone she encounters. All of my siblings have grown up to be in helping professions- go figure! Blake is a police officer, Jamie is currently in school for health promotion, and I am a social worker. We all try to be advocates for people living with disabilities and I hope that other families out there are doing their best to educate family, friends, and strangers about what it means to live with a disability. I cannot speak for everyone, but my family lives to ensure that Lauren can live a life without limits!”