Having a Sibling With a Disability Changes You – For the Better

Parents of multiple children, with one having a disability, often feel overly burdened with guilt. Am I giving my other children enough of my attention? Will they grow up feeling resentment toward their disabled sibling? Will they eventually need therapy to work through childhood memories of feeling neglected or overlooked? If you are this parent, I get it. I’ve asked myself these same questions.

My youngest daughter is 22. She has three siblings, an older sister, and two younger brothers. The youngest is six years old and has ADHD, Autism Spectrum Disorder, and an Intellectual Disability. Since he was around 18 months, he has required a significant amount of my time.

His sister has always been good with him. But like many young adults, her life mainly revolves around work, school, friends, and social media. She’ll play with him when they are in the same room. Or look after him occasionally for my husband and me to go out to dinner. But other than that, he’s the little brother she’s often trying to get away from to do the things she wants to do. And understandably so, I was also once 22!

This past weekend, I was set to attend and present, along with someone else from the non-profit I volunteer with, Collaborative Corner for Exceptional Children, at Orlando’s 23rd annual Family Café. The Family Café is the largest cross-disability conference in the country. Last year, due to COVID, the conference was held virtually. But this year, with some restrictions in place, they again opened their doors for an in-person event.

As the event got closer, I decided to ask my daughter to attend with me. I thought she could help our team out. Still, more than that, I thought this would be an excellent opportunity for her to interact with other families of children with disabilities as well as other individuals with disabilities. I wanted her to see how our family is not that out of the ordinary and to experience the true joy of serving others on a larger scale.

The exhibit hall was full of booths of either a disability provider or micro-businesses run by persons with disabilities. Then there were break-out sessions of presentations on topics such as How to Plan for Your Special Needs Child’s FutureQuestions and Answers on Early InterventionHow to Have a Crystal Clear IEP, and ours Diagnosis: What Next?

My daughter attended our presentation to assist in passing out session notes. Afterwards, a family of a little boy, newly diagnosed with autism, came up to us at our booth to talk more about our presentation, the services we offer, and for some words of encouragement. I was speaking with them when my daughter interrupted and said to them, “I just want to tell you that I have a little brother with autism, and he is the funniest and happiest kid. And, as my mom said, you are going to change as a parent. But you are going to change for the better. I have witnessed my mom evolve as a mother since my brother’s initial diagnosis. And not that she wasn’t a good parent before, but she’s a better one now. To all her kids.” The mother and I both started crying! That testimony from a sibling must have meant the world to her. And it certainly did to me. I’d never heard my daughter say anything like that.

The interaction with that family was a turning point that drove her to fully engage in the rest of the conference in ways I never expected. When parents would come up to our booth, she’d initiate conversations. I heard her speak with compassion and empathy and share information I had no idea she even knew. She said, “Mom, I hear you on the phone with parents all the time. I read most of your blogs. I’ve seen my brother working with his therapists for years. I know this stuff!”

She also spent a lot of time walking around the exhibit hall engaging with the disabled youth and adults. She spent time with the young girls looking at the pretty bracelets they made, and she bought several. She engaged in a lengthy conversation with a young man who wanted to know detailed information about all our televisions. Then he pointed to her and said, “Do you want to know something cool?” Of course, she said yes. And he replied, “I can read minds! Let me read yours!” He was in a wheelchair, so she walked around and knelt while he voraciously rubbed her head to read her mind. She was smiling ear to ear as he told her, “You are thinking about work!”

On our drive home, she talked non-stop about how much she enjoyed the Family Café and primarily interacting with the children and young adults with disabilities. She said how she loved seeing how they live their passions unapologetically! She felt their innocence, vulnerability, and most importantly, noticed that all they want is what we all do, to be accepted as we are and genuine and authentic connections with other people.

My daughter’s instant transformation was an honor to witness. I observed a level of compassion and empathy towards others in her that I’d never seen before. She may have told the family we were speaking with that being the parent of a child with a disability changes you as a parent for the better. But this weekend, I saw that it also changes their siblings for the better!

I am the sibling of someone with special needs. I believe this is the best thing that has ever happened to me because I see the world through the eyes of possibility. – Author Unknown

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Amy Nielsen

Amy Nielsen is a former children's librarian of nearly twenty years. She now spends most of her time obsessively pounding on a keyboard. She is the author of It Takes a Village: How to Build a Support System for Your Exceptional Needs Family, Goldilocks and the Three Bears: Understanding Autism Spectrum Disorder. Her upcoming YA Worth it debuts in May of 2024. She is also a freelance writer for The Autism Helper. When she's not writing, she and her family are most likely crusing the waters of Tampa Bay.

2 thoughts on “Having a Sibling With a Disability Changes You – For the Better

  1. I completely understand this. I have a son (12) with 22q 11.2 distal deletion syndrome and autism. I also have a daughter (15), who does not have a disability. My son has severe developmental delays and our life has been a merry-go-round of doctors, hospitals, and therapy since he was 3 years old. Trying to ensure our attention, as parents, is balanced between the two has been something we’ve tried very hard to do. It’s not always easy. My daughter does get annoyed and impatient with him, just like any big sister does with a younger brother, but at the same time, when it’s called for, she is incredibly protective of him. Your daughter sounds like an amazing young woman.


    1. Hi! Thanks for the comment! Your daughter will likely grow up to be one of his biggest advocates! I understand how difficult it is to manage that balance. All we can do is our best and I believe our children do understand that. 🙂


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