Pink Stuffed Bunny: The Perspective of a Sibling

Author: Tatianna Zambrano, BS, UF Doctoral Student

Published: February 2022

My mother told me recently that when my younger brother was born, I was so excited because he was “like a real-life baby doll” that I could dress, take care of, and read bedtime stories to (even though I couldn’t read yet). Little did I know that I would still be doing all these things 21 years later. You see, my brother was 5-years-old when he was diagnosed with Autism Spectrum Disorder (ASD) and an accompanying intellectual disability. I did not notice it then, but I transitioned from a sibling to a caregiver that day. 

Every person has insecurities, but for a caregiver, insecurities play a major role in the perception of care. If you do something wrong, then not only is your life affected but someone whose life is dependent on you. 

Some days are really great. We might be able to go out to eat instead of having to eat at home to avoid unpleasant lights or sounds. Sometimes we may be able to go to a movie or a fun day at the park. Maybe I got him a new toy, and now we can laugh and play.

Other days are not so great. I forgot to wash his favorite shirt, so he had a meltdown. I accidentally yelled “STOP” and scared him when he chased a ball down the driveway, and now he’s banging his head and having a meltdown. I made him put on a jacket to go outside and… well, you know. 

As a caregiver of someone with a disability, it can feel like everyday decisions have you walking on eggshells. It is one thing to deal with a tantrum of a 5-year-old boy, but another when that boy is now a 21-year-old and can seriously injure himself. People always look, people always stare, but people don’t know. They don’t know why an adult man is wearing a superhero costume at the restaurant. People don’t understand why an adult man wants me to buy him the pink stuffed bunny at the store. But you know, and you can hear judgments being made about your loved one for their condition. In your mind, you’re thinking about how you fought with him to put on a t-shirt and jeans and how you ended up giving into the superhero costume because you didn’t want to escalate the situation into a meltdown. In your mind, the pink stuffed bunny is much better than the soccer ball that can roll into the street. 

In your mind, you also start to question your ability. “Maybe someone could be doing this better than I am.” Someone else would be patient enough to wait for him to change his clothes, and then he wouldn’t be getting these judgmental looks and comments. Someone else would be smart enough to order the toy on Amazon instead of in public. There is always someone else who could take better care of him than myself. It is even heavier when your decisions have an impact on their welfare. You may discover a helpful resource, such as a certain special education or early intervention program, and think to yourself, “if I had done my research earlier, they could have been getting these services for years.” While I know I can be susceptible to these thoughts at times, I trust I am doing my best, and so are others who may be having similar experiences.

I am sharing my experience with you all because I know I’m not alone. I know there are many others out there going through similar things every day. We, as caregivers for children and adolescents with Autism, can get so caught up in society and our own expectations to where we forget that we are human and learning. I had to grow up very quickly, but I wanted to help my parents take care of my brother because I love my family. In those moments of fear, when you ask yourself, “am I doing this right?” or “am I the best for this job?” it can feel consuming. However, you’re not in this alone. 

Something that has helped me in recent years has been finding support groups of peers my age going through something similar. We share experiences, sad stories, funny stories, resources, and, most importantly, our insecurities. The best feeling comes when I realize I am not alone in this. Myself and many others continue this journey as a caregiver for people with ASD because of the love we have for those we care for. 

If you are having similar experiences and would like to find ways to connect, please reach out to us, The Florida OCD Autism and Anxiety Treatment Center (FLOAAT Center), so that we can connect you with resources. Therapy interventions, including mindfulness therapy and cognitive behavioral therapy, can also help provide a safe space to process your emotions and experiences. 

You are not in this alone, and we are here for you.