Growing up with a sibling with autism

My name is Nakita Cabrera and I am currently a student at the University of Guam. Since 2009, my parents and I have started a tradition in which one of us submits a letter to the editor in honor of my brother, Nicholas, and autism awareness.

This year I decided to write about my childhood and what it was like growing up with my brother. I am sure the general public is now aware of the meaning of autism, but most do not realize the amount of patience needed to be able to understand individuals with this disability.

My parents and I have learned to develop patience because of my brother, but I did not always have the amount of patience that I have now. As a child, I did not accept the fact that Nicholas was different. I was ashamed and embarrassed whenever we were in public. I hated the fact that people would stare and talk. I hated knowing that people would make rude comments or would mock him. I hated everything about the idea that my brother was different from everyone else.

For many years I was not accepting of my brother, and unfortunately, those negative feelings lasted until junior high. I remember questioning why my life had to be different, and to this day I wish I had not been so negative. I wish I had been more understanding of who my brother was and how special he really is to my family. Since I was little my classmates thought that I was an only child. I could not blame them though because I never mentioned anything about having a brother, especially a brother with autism.

Whenever they would question me about why we did not attend the same school, I felt completely ashamed having to explain the fact that my brother was at another school and under the special education program. The embarrassment of having to say those words was the hurt that I felt for having a brother that was different. And because I disliked the fact that my brother was different, I felt that I was different as well.

As I grew older, I still had those negative thoughts and feelings. I also spent a lot of time with my friends. It was a way for me to forget about everything that I had to deal with at home. It was a way for me to be somewhat normal. Towards the end of my high school years, more and more people started to hear about my brother having autism. People were even curious of what autism was all about, and would ask me questions about it. I was actually starting to feel more comfortable talking to others about my brother. I was actually growing less ashamed and growing more comfortable being in public with him. I was finally accepting of who my brother is as a person.

Why the sudden change of heart though? Well, everything changed the day I thought I was going to lose my brother forever. I would like to call it a rude awakening, but it was definitely something that I needed. The summer after I graduated from high school, I started to spend more time with my family since it was the summer before I started college. Everything we did, we did as a family. Fathers Day was no different. I remember everything so clearly. We had decided to go to the movies after having lunch at McDonald’s (one of my brother’s favorite places to eat). I remember thinking that this Fathers Day was perfect, but I guess I had spoken too soon. At the end of the day, everything seemed to fall apart. From my room I heard my mother’s voice, screaming my name. I walked outside to see her on the floor, crying in front of my brother. She looked up at me, her eyes filled with tears, and I looked down and saw my brother having a seizure. Seeing my brother in that condition broke my heart to pieces. He did not look himself and the image of him in that state haunts me today.

I remember panicking and running out of the house looking for my father. The next thing I knew, the ambulance came and we were on our way to the hospital. Let me make this clear by saying that I know seizures are not as fatal or as tragic as illnesses or even death, but never in my life had my brother been in that condition. I did not know whether or not it could have affected his brain. Never in my life had I been that worried and scared for my brother. Also, the fact that my brother is nonverbal made me worry for him even more. Because my brother is nonverbal, he was not able to tell us about the pain he was feeling, or what had happened prior to the seizure.

From that night on, I knew that things had to be different between me and Nicholas. I knew I had to somehow forget about the way I felt or acted in the past and focus on building a stronger relationship with him. I wanted us to become close, and I wanted him to completely trust me and turn to me for help. That night was my rude awakening, and I knew that I did not want to see another incident like that happen knowing that our relationship was not as strong as how I wanted it to be. It is very common for children and adults with disabilities to have seizures at some point in their lives. Unfortunately, some have to deal with seizures their entire life. It broke my heart seeing him in that condition, it broke my heart seeing them take him away in an ambulance, and it broke my heart seeing him in that hospital bed. For a few seconds I thought I was going to lose him forever.

I share this story for many reasons. First, I wanted to share my experience growing up with a sibling with autism. I wanted to share how difficult it was for me, and how life changing it was to have possibly lost the only sibling I had.

Second, I wanted to share to those who also have a sibling/s with autism that there is no need to be ashamed of your brother/s or sister/s. As siblings, we need to be there for them to help them, protect them, and guide them through life because they need our help to live each day as normally as possible. Aside from our parents, we should have strong relationships with our sibling/s because no one understands them as much as we do. Yes, it will be difficult, but I believe that we were given this journey for a reason. It is up to us to help our brother/s and sister/s live each day as we would for ourselves.

Third, I wanted the general public to be aware and accepting of autism. The more understanding and accepting we are of those with autism, the easier it will be for them to live in this world. We must all develop patience to understand these unique individuals. I believe that my brother has taught me to be patient, not only with him, but with others as well. Individuals with autism have a more difficult way of living life, but that is only because they were created in a different and special way.

I speak on behalf of my brother that those with autism want to be accepted in our society, to be loved by our family and friends, and to be guided through life each day. Let us not only use this month to celebrate autism awareness, but let us use this awareness as the first step in helping those, like my brother, feel welcomed in our schools and communities. Most especially, let us help those with autism feel welcomed throughout the CNMI.