I’ve known autism now for over 20 years, and saying it’s been an emotional rollercoaster does not do justice. You have to live through it to understand the ride.
My most vivid and earliest childhood memory was being in a doctor’s office (light blue walls, big brown desk, white coat), which I later realized was where my brother was diagnosed. Then I remember my mom holding my brother in his arms, and my dad holding my mom while walking down the black, metal staircase. I think I was walking alone on the steps, but not too far away.
And that’s how I’ve felt for so long — I always felt like I was trying to walking solo, on my own path, but not too far away from my family. I became a second mother, a third parent to my brother. Little did I know, there were many others on this similar path; it took me over 10 years to find my first “Sibs-friends.” And — I hope I am able to speak on their behalf — we all feel the same way: it’s tough, but we love our siblings just the way they are. We acknowledge that we wouldn’t be who we are today if it weren’t for autism.
So I will wrap this up with tears of mixed emotions and a letter that I wish my brother could understand, not today, but maybe in the future:
To my dear brother,
Your world of autism seems so simple. You live day by day to fulfill the little joys you need (expected favorite meals, favorite toys, scheduled events) and have so much love and care around you. Yet, you struggle with your lack of independence and the looming presence of seizures each day.
I’ve watched you grow, and it was not easy. From the days you would throw tantrums in our favorite arcade to when you first discovered puberty and seizures, to our first time alone for an extended period without parents… I’ve been there. I’ve been there to play with you, cook your meals and brush your teeth.
Because of your autism, I am a product of arrested development, discovered bits of parenting before I turned double-digits in age, and a constant worrier. It affects me in ways that I have yet been able to describe completely.
Yet, thanks to your autism, I am who I am today. I discovered a career that I am passionate about, and have met wonderful people who are just as understanding as I am about the importance of communication. Because of your struggles to tell our family about your interests, your daily memories and your immediate needs, I wanted to help ease that pain for other families.
I am a person who will give a piece of her heart to everyone who needs it, and let my love and care bleed out until I have nothing left for me. For better or for worse.
And for that, I am forever grateful. I believe in things happening for a reason, mainly because of you, my sweet brother. Thank you, “Brat,” from the bottom of my heart. Thank you, autism, for the tough moments and the blessings.
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