Since my 20-year-old brother, John, was born, I’ve helped care for him. After John’s autism diagnosis, my participation in his caregiving increased. Over time, we created a close bond. We watch movies and TV, make up silly stories and have attended a variety of concerts. Eventually, I became John’s confidante, social etiquette coach and playmate. If John wanted to do something with me, I usually made time for him. But if I didn’t have time for him, I didn’t hesitate to say no. I knew if I didn’t have time for John, then someone else at home could spend time with him.

During the past few years, Mom and Dad’s work responsibilities increased. Since John and I are so close, I became John’s primary caregiver. My responsibilities also include helping John with his college classes. At first, this arrangement was beneficial to all. Then, I started to struggle between balancing John’s needs and wants with my own obligations, needs and wants. Saying no to John started to become more difficult due to the lack of time Mom and Dad could spend with John, if I was available.

Most of last year, Mom was ill. As the family prepared for Thanksgiving, Mom was diagnosed with cancer. Before we knew it, Mom was going into emergency surgery to remove a large cancerous tumor. With Dad focused on Mom’s care, I took over running and maintaining our household. This added responsibility took more attention and energy than I realized.

Every day had drastic changes. There was little structure or stability for John. With no guarantee of Mom’s outcome and John’s intense fear of death, John struggled to understand and cope with this situation. He reacted by isolating himself and having more meltdowns. As John’s caregiver, I felt like I’ve failed him. When he got a cut, I could put a bandage on it and tell him everything was going to be all right. But now, I couldn’t guarantee nor protect him from cancer’s stark reality.

Because of Mom’s cancer and treatment, I struggle to say no to John. He asks me to spend time with him when he feels the loneliest. By saying no, I feel as though I’m neglecting John emotionally, when he needs it the most. When I see the disappointment in John’s eyes, it feels like a knife twisting in my heart.

During this phase of caregiving, I’m learning to set reasonable boundaries for John and me. And sometimes I have to say no. Despite how bad I might feel saying no, I’ve learned three reasons why it’s OK to say no. One, I need to prioritize my obligations. Two, I have to care for myself. And three, finding a middle ground. Being a caregiver, it’s so easy to want to do everything at once. Yet, by adding more unneeded pressure, you wind up overwhelmed and stressed, and you end up being less productive. To help prioritize my obligations, I write a to-do list, ordered from most to least important. It helps me schedule my day.

A week after Mom’s surgery, I had my semester finals. After turning in my last final, my professor, knowing about Mom’s health, advised me, “Remember to take care of yourself.” As a caregiver, you spend so much time caring for others that it’s easy to put your needs last, or ignore them. There have been times I’ve neglected my needs, to exhaustion. This not only hurt me, but also made it also make it difficult for John to function through his day. If you can’t take time to care for yourself, and you become ill, how can you help those who depend on you?

With John’s input, I try to find a middle ground daily, between home obligations, self-care and fun time. Getting there is a daily challenge. With every day’s priorities changing at a moment’s notice, it’s hard to make a schedule. So the focus is put on finding stability through the middle ground. There are days where everything goes smoothly, with plenty of space for fun time. While other days are so rocky and stressful, and I feel like bed time couldn’t come sooner.  But we aim for realistic options for both of us.

Being John’s caregiver has greatly impacted my life. John’s influence can be seen in many aspects of my life, from my college major to my sense of humor, and even my career aspirations. It’s never been easy. At times it’s overwhelming. But most of all, it’s been an amazing, yet unpredictable adventure for both of us, with no sign of stopping any time soon. Nor do I ever want it to end.

 

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

RELATED VIDEOS


Hello everyone, Production Intern Andrew Levin here with a new video. A common question people with autism get asked is ‘How do you tell people you have autism?’

I have my own method of telling people and I’d love to hear your methods as well! Share your method below.

If you have any ideas for videos you’d like to see, please contact me at [email protected].



Most parents of kids with autism can relate to what I call “the short list.” It’s the list of restaurants where you can go and you know your kids will be comfortable. This story is not about the long list of restaurants we don’t go to. It’s about one more restaurant that I feel every parent of a child with autism should add to their “short list.”

My son Braeden is 7 years old and on the autism spectrum, and Perry is a 14-inch plush platypus. They’re best friends. Braeden, Perry and I set out in our hometown of Media, Pennsylvania in search of brunch. We found ourselves at a familiar yet relatively new restaurant, Bittersweet Kitchen. Braeden ordered chocolate chip pancakes and bacon, and he began to place Perry’s order when I interrupted and laughed to the waitress.

Not long after that, our food came — and so did Perry’s.

boy and stuffed animal sitting at restaurant table
Braeden and Perry eating brunch.

I sat there and watched the smile spread across Braeden’s face as I held back tears. I thanked the waitress and the owner for their kindness and left. Sitting at home later that night after Braeden and Perry were fast asleep, I couldn’t help but feel completely overwhelmed with emotions. I thought to myself that the waitress may never know what she did for Braeden. What may have seemed like a small act of kindness to her meant everything.

As a parent of a child with autism, all we really want is acceptance — for us, for our family, for our child or adult loved one with autism. Some days are defeating, but then you find the days when you don’t need to search for it, when acceptance greets you at the door and serves a stuffed platypus a meal. Those are the moments worth sharing, a day you’ll always remember and a restaurant worth the “short list.”

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Sometimes living life with autism can be hard. Moments can be challenging, triggers can be hard to figure out and calming and regrouping can seem like it takes forever. The fact that you have so much to say and might have a hard time saying it. You communicate it in the best way you can. Others don’t always understand, and this causes frustration. The frustration is real. The struggle is real.

But even on the hardest of days, during the hardest of moments, it helps me to look back and see the positive. What went well? These things may not seem big at all to most people, but for me they are still big accomplishments. Rather than only focusing on the meltdown itself afterwards, focus on what went right. For example, I independently used my iPad multiple times to communicate frustration, wants and needs when words were hard. I requested sensory items to help me calm down. (Knowing what my body needs is a huge accomplishment!) After the feelings of tears and frustration passed, we picked up the pieces and moved on, remembering just how far I’ve come.

Later I’m almost always one of the first ones to try to figure out what strategies we can implement and use to help prevent those hard moments when it is all just too much. I’m so grateful for my amazingly helpful and supportive family, therapists and friends.

I want you to try and remember the accomplishments, even through the hard moments. Remember where you once were and where you are now, how far you’ve come. Remember steps back may happen. That’s normal; it’s part of life. But throughout the hard, look deeply to try and find a positive. And try to remember everything will be OK.

Don’t let the hard let you forget how strong and awesome you are. Keep trying, and keep noticing the positives. They really are a big deal.

Woman standing next to a statue of a guard made of Legos

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


When The Hollywood Reporter shared the news that the award-winning, “autism-themed” love story, “Jane Wants a Boyfriend,” was being released this spring, we immediately wanted to know more. As it turns out, the movie is inspired by a true story, and one of our own Mighty contributors, Kerry Magro, worked as a consultant on the project.

Jane Wants a Boyfriend” is focused on the relationship between sisters Bianca and Jane (played by Eliza Dushku and Louisa Krause, respectively), the latter of whom has autism. Jane expresses an interest in wanting a boyfriend, and with a little help from her overprotective sister, she dips into the dating pool.

Jane Wants a Boyfriend film still
Image courtesy of FilmBuff / Copperline Creative

“Jane is inspired by a friend of [screenwriter] Jarret Kerr,” executive produce Anne Dempsey told The Mighty. “She told us how her younger sister, who is on the autism spectrum, had approached her for help setting up an online dating profile.”

During the research phase of the film, producers connected with Kerry Magro, a successful author, public speaker and self-advocate, who was diagnosed with autism when he was 4. Magro, who was nonverbal as a child, jumped at the opportunity to get involved after reading the script. His primary duty was to make Krause’s portrayal of Jane as “realistic… as humanly possible.”

Magro, who saw similarities to his own love life in this story, says Jane’s character is a “spot-on portrayal of what people with autism tend to go through when it comes to dating.”

Jane Wants a Boyfriend film still
Image courtesy of FilmBuff / Copperline Creative

“I hope the audience comes away realizing that people with autism can feel empathy and love,” Magro continued. “We are making the world more inclusive about the needs of others, and that’s a great thing to see.”

Dempsey said she’s thrilled with the reaction the film has received thus far. During a post-screening Q&A at the Napa Film Festival, one mom told Dempsey, “You guys nailed it.”

“Jane Wants a Boyfriend” hits theaters on March 25. Watch the trailer below.

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