April 10th is National Siblings Day. In honor of Siblings Day, we're hosting Sibshops: a group for siblings of children with disabilities. If you fall into that category, you can learn more or sign up here.
We wanted to gain a little insight into what it was like to have a sibling with a disability, so we sat down to chat with Jack Pennoyer, Marcfirst's Transition Coordinator. Read on to learn more about his experience.
My sibling's name is Valerie, though I just call her Val. Val happens to have Down Syndrome. She is currently 34 years old. She also has many nicknames, two being Bones and Beans. I'm not really sure where either of those came from, though at this point I've been familiar with those as her nicknames since I was a little kid! She is my oldest sister, as I have one other as well that is older than me. People often think she's my younger sister when we are out since I am much taller than her! I am always quick to remind people that she is my older sister, though sometimes if I try to suggest that she do something, she always tells me to "stop being her father" in a very sisterly tone, which I love. If someone asked her, she would probably call me the "annoying little brother" but that she loves me and misses me a lot too (she lives up north closer to the Chicago area).
My favorite thing about Val is her ability to be really funny out of nowhere, and most of the time not on purpose. There was one time where my dad was helping her with her laundry and dropped the entire bin onto the floor to which she immediately said, "down it goes!" in a super silly tone. It was so out of nowhere, he and I both were cracking up, and now that is something she says if anything falls in a silly way.
She is also very honest and will make it very clear if someone is bothering her. Many people describe this as having "no filter." I think it's great because I know I sometimes feel like I try to be really nice, and sometimes it gets in the way of how I really feel about something. She is very "real" and will always say how she feels about something, good or bad!
Growing up with a sibling with a disability was hard sometimes because we would go on family vacations, and a lot more planning would have to happen for us to go on a trip. Sometimes we would have to cut a trip short or find a way to help her through situations where she was having trouble walking for a long period of time or would need extra help with something related to traveling. Even things like going out to a restaurant might need some extra planning. As a kid, it really taught me a lot about being patient with someone who has a lot of needs, and I remember feeling bothered at first when I was a kid because we always had to choose certain activities or plan our day around what would work for Val, but as I got older I grew more patient and realized that I would rather go on a trip that was adapted for her than not be able to vacation as a family. I realized that we all have needs, Val's just took a bit more planning and consideration to work around.
I was happy to have friends that acted really normal around my sister, because I also really didn't like when I felt like people were weird around Val or would talk down to her. It made me happy that they didn't even think of her as "my sister with a disability," they just saw her as Val. My closest friends thought this way, and it made me happy and more comfortable with them.
My relationship with Val might be different than a typical sibling relationship because of the things we have done in our lives. Her schooling looked very different than mine, and the way she lives looks different than mine too. Not in a bad way, because it just gives us different stories to compare. She gets to tell me about living with a few roommates and some staff to help out, and I get to tell her what it's like to live with my girlfriend. She goes to her "day program," which has activities and work for her to do, and I go to my job at Marcfirst. Certain siblings may share experiences that feel the same because they grew up with similar needs, but Val and I both have different perspectives, which just makes conversations as adults a lot more interesting! I feel like there is a lot to share.
Some people describe their relationship with their sibling as having a certain "dynamic," and I feel like I have a really interesting dynamic with my sister Val. She and I live far away, so we mostly talk on the phone or text, and sometimes I get to see her when I visit my mom and stepmom up North. I know if anything were to happen to my parents, I am set to take over certain things that they help decide for with Val, like things related to her health and wellbeing. I am happy to be this support for Val if she ever needs it, since I know she and I could work together to come up with a plan to make her life the best for her.
Welcome to Lifelong Access.
You may know us as Marcfirst, but we've recently undergone a name change. Why? Because in every phase of life, it’s never a question of if we helped. It’s how we help that truly counts. And how much we helped. Because our clients never outgrow us. And, we never outgrow them. Hence, our new name: Lifelong Access.