I worry about how to care for my brother with autism and his mental health when my parents are gone

Editor’s Note: May is Mental Health Awareness Month and National Masturbation Month. This is also the month that we celebrate Mother’s Day. At BYP, we will be exploring these topics alongside the theme of Imagination and the Arts, and we are interested in publishing works that address these topics and the things surrounding them.

by Ariam Alula

My parents have long avoided having the talk with me about how I can take care of my older brother when they are gone. Daniel, who is 29 and on the autism spectrum, needs full-time supervision and someone is always at home with him — my mom, my dad or me. But I worry about the future when I will be his primary caregiver.

Whenever I bring up the subject, they deflect. My mother, who is 57 now, once joked that she plans to live to be 200. My father, who is 62, believes that God will take care of it. So, no help there.

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I have tried getting some answers from organizations that work with families of people with disabilities. I spoke to a lawyer about legal guardianship, but the questions I brought home went mostly unanswered. My dad reassured me that he and my mom were acting as Daniel’s guardians. And for now, he’s right: He and my mom even work in split shifts to make sure one of them is home at all times.

About two years ago, I joined a group run by “SibsNY” which offers support for people who identify with my concerns. What I learned there convinced me even more that, as a family, we need a plan. I heard stories about emergencies, about the consequences of a lack of information when it comes to housing and medical care, and — for the siblings — the heavy burdens shouldered by family caregivers not much older than myself.

I won’t lie — I’m worried about what my life will look like when my parents can no longer care for Daniel. I love my brother but I still have dreams to fulfill. Will I find a romantic partner who will accept us — me plus Daniel? Will I ever go to Paris? What about my hopes and career ambitions to produce news segments for radio?

Mostly, I worry that without a plan I won’t know the best way to take care of my brother. Daniel has battled Seasonal Affective Disorder (SAD) for the past four winters. He can go days without eating solid food, forcing my parents to resort to blending green vegetables and bananas as meal replacements three times a day. Daniel lost 30 pounds one year as a result of severe depression.

At times like this, my brother won’t leave his room. And when this happens my dad and mom will spend hours strategizing over how to get him out of his bed — pulling the covers off his body and peeling back the window curtains to let light in or tugging at his arm. Rarely do they succeed. The more my brother is asked to get up to shower and eat, the more he resists.

The truth is my parents don’t like to plan anything that involves Daniel, even short-term plans like traveling.

“When’s Dani going to Adi?” I once asked my mom.

Adi is short for Adena, which means “our home” in Tigrinya — the main language of Eritrea, where our parents are from. “He’ll go someday,” my mom said.  

Daniel hasn’t visited Eritrea since 1993.

I’ve told myself that I can pick up things by observation, and I have. Daniel enjoys the outdoors, so I take him out to the park to ride his scooter on Sundays. He enjoys reciting lyrics from 90’s classics, so I arrange for him to get a car to his drumming class in Harlem on Mondays. I report back medical notes to his social worker every few months. I keep his clothing receipts stashed in a folder that I tape to our fridge so my parents can get reimbursed for it. I do a lot — but not nearly as much as they do. This is what it looks like when there are three people caring for my brother. How will I do this full-time? How will I do this alone?

When Daniel is in a depressive state, his doctor has advised my parents to give him medication. They do it, albeit begrudgingly, every time. I’m not against giving my brother medication, but I am not his legal guardian yet. Neither are my parents actually, technically. (Professionals advise to begin the process before the individual’s 21st birthday when the government recognizes individuals as “legal adults”). I don’t know how Daniel’s Social Security Income (SSI) works or how to manage other finances that he receives from the government every month, like food stamps.

I’ve learned about some of these things from webinars led by Chung Eun Lee, a researcher at the University of Illinois-Urbana Champaign and herself a sibling or “sib” as we’re called. But not surprisingly, when I brought my dad the binder full of worksheets to help me describe my brother — his likes and strengths, along with his diagnosis — he simply tossed it aside.

The training lasted for two hours over the course of four weeks. Lee arranged to have professionals who specialize in special needs trust and SSI answer our questions. “A lot of us have anxiety about the future,” said Chung Eun Lee on a phone call in March. “And hopefully this training is a reason to go talk to parents.”

Attendees left the training with homework — to produce a letter of intent. The document, Lee explained, is not legally binding, but it is meant to act as a guide for the person’s caregiver(s) to craft a life that is based on the individual’s needs and wishes. The document prioritizes the individuals’ safety and includes sensitive information about the person’s medical history, service providers, and living situation.  

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I haven’t started the assignment, but that’s not what worries me. I’m worried about the lifestyle I may be forced to adopt without a plan. By having this talk with my parents about the life they want for Daniel when they’re no longer able to take care of him, I can live more peacefully and begin to understand the significant changes that I, as his primary caregiver, must make. Will my brother have to live with me and the family that I create or do I have options? I need my parents to understand that having a plan is as important for me as it is for Daniel.

More than anything, I want to know that they will approve of my decisions. That it will be okay if Daniel lives in a facility with other people like him. If professionals, like respite workers, in our home when I’m not there. And along with everything else — a plan, a therapist and paperwork — I want their blessing.

Ariam Alula (pn: Ah-ree-ahm Ah-loo-lah) is a student at the Craig Newmark Graduate School of Journalism at the City University of New York, where she is using community-oriented journalism to tell stories about family caregivers of people with autism. Since graduating with a bachelor’s degree in journalism in 2013, Alula has traveled to over 15 international and domestic cities as a tourist and English teacher. This summer, she’ll be producing online and video content for BronxNet, a local cable television station serving the borough’s 1.5 million residents. She is a 2019 ProPublica Diversity Scholarship recipient. Twitter: @ariam_alula