I’ve most recently connected with the sibling community in a more intentional way within the last 3 months, thanks to the SibNet community. I have enjoyed connecting with Cheryl and I am grateful to have been extended an opportunity to contribute to her blog! As a future occupational therapy colleague and fellow sib, I enjoy her content and think everything she writes about is very important!
Gabe, my only sibling, is currently 21. He is 4 years younger than me. He was diagnosed with severe autism at age 6. Initially he was diagnosed with pervasive developmental disorder at age 2. He is non-verbal.
When Cheryl asked to reflect upon my college experience, I was eager for the challenge. Earning a college degree meant so much to me. It was going to take me places; free me from my situation. Before I get too much into that, I believe it is important for me to share a little backstory to the beginnings of my college journey.
When I started college in the fall of 2014, there were many monumental life changes going on in my life. It seemed to be happening all at once. I was excited to start this journey but it wasn’t exactly what I had envisioned for myself. I had longed to move away from home. I wanted to live in a dorm. Share a bacteria-ridden bathroom with an entire hallway of ladies. Shuffle to my 8:00 lecture in the blitz of the midwest winter. Live off Ramen and Spam. My role as Gabe’s sister prevented me from pursuing that venture. I lived with my mother and sib after my parents divorced in 2012. Many conversations I had with my mother about starting college were oftentimes dismissed. I shared with her my desire to move to college and have that experience. I believed I had “the smarts”, but felt like I didn’t have access to the resources to scholarships or grants. Unfortunately, also at that time, my mother had been laid-off from her long-time administrative position. She went on to draw unemployment for the first nine months of my college journey. I found myself supporting my own family, helping with groceries, helping to pay the bills all while trying to reap the benefits of having a paying job.
When I started college in the fall of 2014, there were many monumental life changes going on in my life. It seemed to be happening all at once. I was excited to start this journey but it wasn’t exactly what I had envisioned for myself. I had longed to move away from home. I wanted to live in a dorm. Share a bacteria-ridden bathroom with an entire hallway of ladies. Shuffle to my 8:00 lecture in the blitz of the midwest winter. Live off Ramen and Spam. My role as Gabe’s sister prevented me from pursuing that venture. I lived with my mother and sib after my parents divorced in 2012. Many conversations I had with my mother about starting college were oftentimes dismissed. I shared with her my desire to move to college and have that experience. I believed I had “the smarts”, but felt like I didn’t have access to the resources to scholarships or grants. Unfortunately, also at that time, my mother had been laid-off from her long-time administrative position. She went on to draw unemployment for the first nine months of my college journey. I found myself supporting my own family, helping with groceries, helping to pay the bills all while trying to reap the benefits of having a paying job.
Defeated in my pursuit of the college dream, I enrolled at my local community college. The beginnings of my education were entirely paid for by a program I participated in during high school, I supposed I couldn’t go wrong.
Within the first two months of college, I lost a dear friend and former educator of mine to metastatic cancer. She was influential in my life. I feel like I was in a time when I needed her the most. Days when I wanted to pick up the phone to call her about all the crazy things that were happening. I very simply could not. Within that same week, Gabe took a fall at the sake of my hand and broke his back. Gabe was exhibiting behaviors and I lost my temper. I pushed him back into his bedroom and he fell to the floor. Days following his recovery, my grandfather was while driving a combine tractor in the rural parts of Missouri. He crossed an unmarked railway crossing and was struck by the freight train. He was ejected from the cabin of the tractor and somehow lived. Looking back now, I think Yes, that happened. I don’t know how I made it through that but I did.
Despite a very rough beginning to my college education, I would say I ended up quite alright. I speak of my experience in college like it was a normal occurrence. Knowing what I know now, I know that it definitely was not. No young adult should be responsible for their sibling in such a way that I was. But I had been engaged in this routine since my late middle school, early high school years. The expectation just evolved as the years passed by as I grew up and was able to drive and be more independent. I felt responsible for the in’s and out’s of a morning routine. Preparing and administering Gabe’s daily medications. Offering Gabe a morning meal. Getting Gabe dressed. Packing his lunch. Negotiating behaviors when they occurred. Oh, I can’t forget myself. Being responsible for getting myself prepared for a day. Maybe making myself breakfast. Maybe packing myself a lunch. I picked out my outfits the night before when Gabe went to bed. I was already living tomorrow before the end of today. I attended Gabe’s appointments, provided him with transportation to/from school. In college, it was easier. But it also made me more available because my classes did not occupy an entire day. My schedule was much like what it had been before when I was in public school. I arranged my day to dedicate most of the time when I didn’t have Gabe. Otherwise, I would sacrifice sleep to stay up late to study, or to attend study groups with friends I had made.
The evening routine was very simply a routine. Everyday almost looked the same. Gabe would have in-home therapy from 3-5PM every weekday. I would have to be present. I would do homework or some household chores. I would often retreat to my room. I would get scolded for falling asleep while the behavioral therapist was there. Gabe’s medicine was to be administered at 5PM daily. My mother and I shared that responsibility but I found myself doing it most of the time. I can feel the guilt I experienced manifest in my body when I think about my mother giving Gabe his medicine, or giving him a shower. It should be me. She’s doing this because it is a lapse in my attention. I want a break, but I need to be better.
I have always been dedicated to my studies. I feel as though most of my life was an effort to compensate for the sibling that was unable to excel academically. I remember there being such a press for my academic performance growing up. I carried that with me as an adult in the most toxic way, but that’s a conversation for another day I suppose. I do enjoy studying, don’t let my perspective skew you away from that notion. Learning was and is my escape from the reality I could not change. I don’t recall ever struggling to focus on my coursework given my role as Gabe’s sister. The coursework was challenging as I chose to pursue a bachelor’s degree in biology. I am enthralled by science. I figured if my track to occupational therapy didn’t work out, I had a biology degree to default back on. I am a first-generation college student in my family. I will also be the first member in my family to obtain a Master’s degree. So you know…no pressure.
I resented my undergraduate experience. I felt like everyone else in my age group was in a sorority, involved in campus activism or clubs. I was checking in, going home and practically raising a young man with autism. I knew no other way but I also knew it didn’t seem right. I did have supportive friends or people that enjoyed my presence. Or people that seemed to enjoy my presence. I remember when I was at community college, I was in a program that provided me with one-on-one academic counseling services. They were the first people in my life to hear me. They supported me on my darkest days. They counseled me through some of the greatest challenges of my life there in the beginning. If you are considering attending college as a sib, I definitely recommend that you connect with a TRiO group or service, if your institution offers one.
I graduated with my bachelor’s degree in the spring of 2019. I married to my husband in the fall of 2019. That transition was difficult and perhaps another story for another day.
Today, I am seated in one of the country’s best occupational therapy programs. I will have my master’s degree in December of 2023. This journey has been equally challenging as I have navigated being away from my family and my sib and all the long-distance challenges that I didn’t anticipate. I have also fought to balance my graduate coursework with being intentional and present in my marriage to my wonderful spouse. I have been supported in the most beautiful way. Each faculty member has gone above and beyond to be there for me. I have made lifelong friendships that I cannot imagine being without.
Now, you’ve heard my story, and you’re probably thinking- heck no. College is not for me. You may think that you can’t leave your sibling behind. That you don’t deserve to live a happy, fulfilling life. That your sibling needs you. Dear sib, please hear me through this screen. I have thought these very same thoughts. Sitting here today, I wouldn’t have wanted my life any other way. In reality, you never leave your sibling behind. They are always with you. Your sibling is a part of you. It is your choice to dismiss or embrace the notion. If you choose to embrace it, choose to direct your caring energy in keeping your sib a part of your life. Your sibling is not your responsibility, but they still need you. They need the best version of you. What can you give to your sibling when you are at the edge of burnout? The most challenging concept to embrace is that we do deserve to live a happy, fulfilling life, despite the years burdened with the responsibility you have carried. Maybe the university experience isn’t for you. I know that not everyone is wired like me. I don’t anticipate that there are any two sib stories alike in this world. I encourage you to envision a happy, fulfilling life. What does that look like to you? To me, as I mentioned earlier, that was to get a college degree to unlock my potential. Continuing my education meant that I was one step closer to changing my reality that I so desperately wanted to change. As those days in college passed, I became more and more terrified of my future without him. But I also recognize that if I had never changed, I would still be living with my mother and sib not fulfilling the happy version of my life.
If you are considering continuing your education, I encourage you to connect with programs offered on campus. If you need assistance in discovering these programs at your institutions of interest, I would be happy to assist you further. You would be surprised what kind of resources can be available to you as a student. From sib to sib, we deserve to have resources that our sibs have. We deserve equal amounts of attention and care that our sibs do. College can be the key to unlock your potential. I have met many, many sibs who are members of the helping profession. We give so much of our lives to our sibs, that it becomes inherent to who we are. If you’re unsure of what you would even study in college, it never hurts to just get started. Many programs and certifications require prerequisite general education courses. Taking them can only help you achieve your degree!
