First, I want to start off by simply not telling my story. I’m a sib, but then again I’m not defined as just a sib. I’ve lived my life, have failed, have triumphed, and have failed again. I owe my strength and my personality to what I’ve learned from my brothers and the character I’ve built.
It was unique learning about I/DD growing up. Being 1st gen in America and AAPI [Asian Americans and Pacific Islanders], the culture was still relatively unfamiliar with intellectual and developmental disabilities, and how to nurture it. So are my brothers forever slow or is this just a phase? I couldn’t decipher whether it was them being sick or something.
Turns out it was none of the above. It was a super power. And as I got older, it turned out to be a blessing in disguise. Leland, my oldest brother, has a great memory. The gentle giant will remember anything from locked memories to video game cheat codes. Say your birthday to him and if you don’t even see him again within the next 5 years and he’ll still remember. Luke, my other older brother, on the other hand hones a special energy that’s kinetic, that is at times magnetic. He loves to dance and hates staying still. But he is also really smart, knows basic sign language and one time cut a lemon in half, inside joke for me. These guys deserve the world, but the world didn’t necessarily give as much love to them from the start, as much as I hoped at least.
As time went by obviously there were challenges faced, obstacles to overcome, like everybody else. However, every sib experiences unique issues that they and they only can try to solve. When you’re a kid, you’re a kid. These are grown-up problems. My parents provided me with a great childhood, but they also were new to this unique caregiving role as a parent overall, and all my respect to them and all sib parents for instilling the love and care we all wanted. Somedays ASD can be a cold moon. The moon controls the currents of the water, the breeze of the winds. And somedays ASD can be the warmth of the sun. The sun controls the vibration of energy, the warmth of the room, the soul of the heart.
Zoom past to now, 20 something years later and now it’s safe to say that both my brothers got the love that they needed. There is a community out there that is fresh, that is safe, and that is being more understood day by day. What really came around was watching “As We See It”, an amazon original series showcasing the organic side of ASD and the world that encompasses it.
Representation truly matters. Seeing someone that acts like you, seems familiar to you, can mean a lot to you. In general, ever since the start of the 2020s, now more than ever before has diversity been actively acknowledged. Acknowledged in the sense that just because someone is different doesn’t mean we can’t value them. There is always beauty in ugly, there is always elegance in crass, there is always nature in nurture.
Reflection is vital it seems for anyone, for sibs. You can’t go farther unless you look back on where you came from, or you’ll get lost. Keep going.
Are you a sibling care partner on a lifelong journey with intellectual and developmental disabilities? Connect with the network of support and resources for you to confidently handle life together at AKALAKA.org
AKALAKA welcomes all siblings to join us on Saturday, April 16, 2022 at 8:00pm ET / 5:00pm PT for our Social co-hosted with Diana Pastora Carson, M.Ed.:
A Journey of a Thousand Miles… Creative Storytelling for Siblings.
This is a fun night for individuals with intellectual and developmental disabilities and/or their sibling(s) to connect with other sibs and take a step toward expressing our stories within a supportive community. Plus: one participant will be selected to win a FREE signed copy of Ed Roberts: Champion of Disability Rights, a book written by Carson, a sibling, inclusionist, speaker, educator, writer, and founder of Beyond Awareness.