This weekend, Ronan's younger brother toured a college with my husband. A fun guys' weekend away, the campus they were checking out has almost everything on the checklist—the major he's interested in, internship possibilities, (somewhat) affordable tuition, ideal location, and just a bit of a drive away while also being kind of close to home. One thing would be missing though...Ronan.
As Willem was packing his overnight bag, I asked, "Got everything?"
He quickly said, "No, I need Ronan. I want him to be able to come with us and also to stay with me when I live there."
Cue the tears.
Ronan's big sister, Fiona, has shared with us that she’s missed Ronan quite a bit since she's been away at college. We hardly got to see her when covid restrictions were in full swing on her campus her first year away. Thankfully, she was able to come home for every break, plus some bonus long weekends, during last school year. Every single time she came home, she jumped right back in to help her brother.
That, in turn, always helped me.
With how giving of her time she was long before going away to school, I encouraged Fiona to apply for a scholarship that crossed my newsfeed. She and I had worked hard to secure others successfully, so I was excited that she wanted to submit an essay for this one. It would be a much, much tougher topic than some of the ones she'd written about before, but I knew she'd be up for the challenge.
The topic? Autism
The essay? That second prompt:
- Tell us about a time that you have had to overcome an obstacle as a person with autism that other people would not have had to face.
- Explain how your loved one’s autism has affected you and how you have adapted to help them.
- Answer this question: What do you feel is the biggest obstacle holding back people with autism today?
Could she do it? Yes!
We sent a few messages back and forth over the next few hours as she edited.
And just like I had, my husband teared up reading it also.
Later, when I asked Fiona if I could share some of her essay here, she didn’t hesitate. Yes, Mom, of course. So, here it is, a little glimpse of what one sibling has experienced as the big sister to someone with autism.
When you take care of someone with special needs, you are never given a how-to guide. Books and guides do exist, but there is never one right way to do it as everyone’s needs are different. Looking up tips on the internet and learning from other’s journeys can only go so far. I know this because while growing up as a sibling to a brother with autism, it was like learning how to take care of two different lives.
My brother Ronan is 19 years old and has low-functioning regressive autism, is non-verbal, and carries with him several other medical diagnoses. He wasn't always like this. I have memories of him being a typical little brother when I was young. It was just him and I as my other siblings hadn’t been born yet. He was such a vocal toddler, and I remember making him laugh just by putting on a silly face. We would stay up long into the night, while I would make incoherent noises that made him squeal with laughter. I know my parents soon regretted putting us in the same bedroom, but I loved being able to make him laugh. However, my brother today is not the little boy I knew. Life has changed much for him as well as for my family.
What worked then, doesn't work now. Those happy toddler days are a memory. Ronan, even though very developmentally delayed, is now considered an adult. Far from being able to take care of himself independently, my parents are his legal guardians and I, and my siblings, are secondary caregivers. I didn’t think much of this process when it was happening. I was used to taking care of Ronan from time to time, even being employed as a caregiver to him under a respite program my freshman year of college when I lived at home. It wasn’t until I took care of him later, on a school break, did I realize the weight of my new role in his life. This realization came when I was tasked with watching Ronan and two of my siblings for two days. My mom needed to go out of town while my dad was deployed overseas. It’s safe to say that those two days were the most tiring days of my life. From keeping up with his medicine schedule to feeding him to taking him to the bathroom to bathing him, I was exhausted. I would eagerly await Ronan’s bedtime just so I could go to bed too, only for him to wake up at 6 am and start his day early.
This experience led me to think about two things. The first was that my mom deserves an award for being the strongest woman in the world. Parents of special needs children are often looked at as always in need of assistance or constantly exhausted. I truly don’t know how my mom has managed to raise five kids, especially with my dad’s constant deployments. Those two days of watching Ronan drained me of energy, I can’t even imagine doing it for almost 20 years.
The second thing I thought about was what would happen if I had to become Ronan’s official caregiver later on in life. I am currently a senior Biology student in college, now at a school far from home, with plans to attend graduate school after graduation. I’ve been forming this plan for years, focusing on what direction I want my future to take. But Ronan's needs could potentially change all of that. Taking care of him would be a full-time job, and I would probably have to put my life immediately on hold.
I’m not going to lie; this possibility scares me. When I started to worry about it, I thought I was selfish in wanting to keep my life for myself. I’ve worked so hard to get through college, and I am so excited to start a career. But what if I had to stop it all for Ronan?
At the beginning of July, my dad came home from an almost year-long deployment. I was able to join my family in welcoming him home, and we all relished in the fact that this was his last deployment of his military career. While I was home, I got to see my mom and dad and was again in awe of how they selflessly took care of Ronan. They didn’t ask for this life of being special-needs parents, but they took on that role and continue to be the best parents I’ve ever seen in action. I see nothing but unconditional love given to Ronan from my parents and my siblings. We treat him as a brother, as a son, and as a human. We strive to give him the most comfortable and accommodating life, despite his medical afflictions. Keeping him safe and cared for isn't something we'll do for a set amount of time; it's something we'll do indefinitely.
My role as his caregiver and older sister started when he was born, even in our earliest days together as toddlers. I am planning on continuing that role for as long as I have to. I’m still able to make Ronan laugh just as hard as when he was a toddler, and I have every intention of keeping him laughing now and for as long as he needs me to. I would do anything for Ronan, even if that means stopping my life for his.
While my daughter was not the recipient of the 2022 Avonte Oquendo Scholarship, I'll keep it in mind for Ronan's other siblings when they get into their undergraduate studies. College is an expensive endeavor, so I am grateful for the thousands of opportunities Fiona has received from other groups over the years. Wanting to pay her own way as much as possible, she's pursued and secured several grants and scholarships. She’s worked 2 part-time jobs, and sometimes 3, each semester. When classes were over, she found a paid internship in her field for the summer. She did so well, she was able to reapply for it for a second summer.
Because of her efforts, she's going to graduate on time and, God willing, debt-free.
I'll hope that Ronan's little brother, who's looking at several options post-high school graduation, will be able to find the same opportunities. For those kids who may not be heading straight to college, or who find themselves on a different path altogether, I hope that they are met with similar successes, too.
Cathy Jameson is a Contributing Editor for Age of Autism.