The Best Lemonade: Sentiments from a Sibling of an Autistic Kid
This “In Their Own Words” post by Katelyn Jolley, whose brother Jon has autism. Katelyn is a homeschool graduate, musician, guitar teacher, and sister to a brother with autism. She is also the founder of the Facebook group Siblings of Autistic Kids.
“Ay-yoo,” Jon said. His head was buried in my shoulder; I could hear the muffled sound of his helpless hiccuping. In that moment, I felt my frustration dwindle and disappear as it was replaced by something else: tears. Silent, warm tears to match my brother’s. We cried together.
It had been another breakdown. I hadn’t let him play outside, and he didn’t like that. During these severe tantrums, I had learned, it was nearly impossible to comfort him; I had waited for the storm to blow over.
As I knelt there comforting my sobbing brother, I found myself reflecting on the past two years of our lives.
The very first time I saw my brother, Jon, he was nineteen months old. It was a chilly February weekday. As a family, we had made the decision to adopt him. I remember giving Jon a hug for the first time; he just stood there, stiff. “He’ll get used to you,” my parents encouraged.
Not long after Jon’s adoption, we started noticing unusual traits: head banging, toe walking, screaming, and lack of responsiveness, to name a few. In the beginning, we simply equated these things with personality quirks. But there was another mystery: Jon didn’t get hurt. He didn’t feel pain; at least, he didn’t show it outwardly. We thought for awhile that he was simply “tough.” He was a husky kid, after all. Maybe he had some early-onset phobia of emotional showcases. Who knew?
We soon realized, however, that something more was going on. We took him to an Occupational Therapist, who diagnosed him with Sensory Processing Disorder (SPD). But even then, armed with a fresh diagnosis, we had a feeling that wasn’t the full story.
Jon’s tantrums continued to worsen. His second birthday came and went, and his communication skills were next to nada. His younger brother began to catch up to him in developmental milestones. With time passing and Jon not progressing, we decided to get a second opinion. We now know that Jon (three and a half) has Autism Spectrum Disorder (ASD).
As anyone in my shoes will agree, being a sibling of an autistic kid is not always easy. For siblings of kids with special needs, denial is often present. But I have learned that love, unconditional love, is amazing at filling in the gaps caused by frustration and confusion. I’ve found truth in the sentiment, “(S)He who laughs, lasts.” I’ve learned that acceptance is a mindset. Having an autistic sibling can be a beautiful journey. It is a remarkably life changing, character building experience – if you let it be. Along my journey as a sibling of an autistic kid, I’ve learned things I never knew, felt things I’ve never felt, and loved in ways I never knew I could.
If life hands you a lemon, don’t just make lemonade; make the best lemonade on earth and give everyone a straw.
As I knelt there holding my priceless, beautiful brother, the memories kept coming and I felt a sense of overwhelming love. I wanted to help him; I wanted to keep him safe.
“Ay-yoo,” Jon said again, and tears filled my eyes, for I knew something: “Ay-yoo” was his own imperfect, wonderful way of saying, “I love you too.”
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.