I Want a Big Sister ‘As Seen on TV’

Growing up with a sibling who has autism

“God, why can’t I have a regular sister?”

That’s a question I asked God a lot in my childhood prayers. The question encompassed all the bitterness, anger and resentment I harbored from being a sister to someone with autism. I knew I loved my sister, but why did she have to be different? When I was 7 or 8, I realized that I would not have the “typical” older sister, as seen on TV. The older sister that would take my side with mom and dad. The one that would give me advice on boys. The one who would teach me how to apply makeup or commiserate with me about the let downs of life.

Growing responsibility

In my early years, I was the happy-go-lucky child who dragged her sister along in mischievous pranks. However, as I grew older, I stopped being so happy-go-lucky. I experienced the rush of teenage emotion with the typical insecurities about my appearance and unexplained angst against my parents. I also started to feel angry about having to watch out for my sister who not only had autism but started to suffer from epileptic seizures. My main responsibility: watching her when my parents weren’t home. I thought, “Other people don’t have to babysit their older sister.” All I wanted to do was hang out with my friends, but my parents had jobs that kept them away more than I liked, which meant the responsibility of watching my older sister fell to me.

The worst part — spending time with my sister wasn’t like “hanging out” with someone. My sister couldn’t talk with me about my struggles in life. She didn’t even want to be close to me. She would be off in her own world and space. I was left alone. Around 14 or 15, I started praying a little more fervently to God. I remember praying for the loneliness to go away. I prayed for someone who could understand me. I prayed for someone who I could talk to, who would be nearby, who I could run to immediately. It’s interesting, and a little funny, to think back and realize God answered those prayers. The answer was God himself.

I prayed for someone who could understand me. I prayed for someone who I could talk to, who would be nearby, who I could run to immediately. It’s interesting, and a little funny, to think back and realize God answered those prayers. The answer was God himself.

In times when I wished for or needed that older-sister guidance that felt lacking, I would talk to God. I could feel and hear him reasoning and conversing with me. Praying and talking to God gave me strength to be patient when my sister didn’t realize or understand something as quickly as I would like, or sometimes not at all. When I realized that my sister couldn’t talk to me about more than the basic facts of life and only with the understanding of a 10-year old child, God let me cry to him. God listened to my fears when my sister’s seizures started getting worse and gave me calm in my deepest worries. God truly became the close confidante that I so desperately needed. In time, God’s role as confidante for problems with my sister extended to him being confidante in all-important matters of my life.

God’s clarity

Most surprising, God eventually gave me the clarity of seeing how amazing my parents are. With absolutely no experience in dealing with either autism or epilepsy in the family, my parents have done amazingly well. I cannot count the times my mom has set up meetings to see what Special Education program would fit my sister the best. Or the number of doctor’s appointments made to explore the mysterious and scary world of epilepsy. The best, though, is seeing the amount of love my parents give my sister despite her not being able to fully express her gratitude. All this while taking care of me and supporting my interests. To say my parents are my heroes would be a complete understatement. What a change from my earlier resentment!

God’s clarity did not stop at gratitude for my parents. I matured a lot faster because my parents depended on me. My sister made me more grateful for the things I did have rather than the things I did not. This especially rang true when the petty problems of high school would arise. I could better distinguish friends who were truly valuable by the way they would help me entertain and take care of my sister. Also, I realized that I developed a strong relationship with God and the Church at a younger age than most of my peers. Most importantly, my sister taught me that love is truly unconditional and cannot always be molded into the way we want it to be. God gives us the people that we love, but it’s always up to us to accept this love. I know now that everyone wants that “typical” sibling relationship, but sometimes things don’t turn out the way we want them to. Struggles with siblings happen in every family; mine just happened through the spectrum of autism.

Do I wish that my sister wasn’t autistic? I think I always will, but now that wish is more for her benefit than for mine. My mom puts it best when she says, “God would not give us things or people we cannot handle,” meaning we are all stronger than we think, and we can overcome and grow from the challenges God gives us. At the end of the day, Kathy has given me so much, even if it has taken years of challenges to realize this. I might have given something to her as well. I think I have when I see her smile, or when she will give me the rare occasion of a hug or when she’ll exclaim how much fun she’s having when I take her somewhere. These are small signs, but I take time to thank God for them.