My brother Jeff has autism, and he is our family’s hero.
Soon after I was born, my parents received the autism diagnosis for him, and our lives were changed forever, launched onto a trajectory nobody could have possibly planned for.
In 1987, the diagnosis rate of autism was 1 in 10,000, and Jeff was severely impacted by the condition without speech, having obsessive-compulsive tendencies, and suffering hyper-sensory issues that could bring him to tears. Now, 32 years later, he still has these challenges but has come so far, learning to adapt with many self-taught mechanisms, and we do all that we can to make the world a more welcoming, approachable place for him.
Jeff is much more than a diagnosis; he is smart, funny, honest, generous, creative, patient, thoughtful, kind, adventurous, and so incredibly brave. He wakes up each day with a smile on his face, genuinely excited to take it on. Jeff has a twinkle to him and looks at the world through a lens that is totally pure — he is love.
Jeff has been our North Star, and our family has followed along a much unknown autism path. I can confidently speak for my oldest brother Tom that we really wouldn’t have changed a thing, and that is a testament to my parents. We always have, and continue to, feel so loved and important, and we never wanted for anything. How my parents pulled that off, I will always wonder, and I pray that I can be half the people they are.
We have a network of friends with kids affected by autism and we call ourselves ‘the lucky ones.’ Between the four families, there are 13 kids total, and we get together and have a ball. It was therapeutic to be with people who knew exactly what you were going through — a true ‘no judgement zone,’ and we all have grown and evolved together, providing support along the way.
That being said, our autism world was small. We grew up in a small, supportive town where everyone knew ‘the boys’ and integrated them into the community with open arms. Early in my career, I started working at the largest and most widely known autism nonprofit, and I couldn’t believe just how many people were affected. Autism knows no bounds and doesn’t discriminate in the lives it touches. Autism is a lot of things, and among its characteristics are expensive and isolating.
Selfishly, Jeff’s autism broadened my world, bringing me treasured friends on every continent. I was in a position where people would look to me as a sibling and ask if I could connect with their kids because they were having a hard time being the ‘typical one.’ My heart breaks when I hear this. Please don’t get me wrong: autism isn’t all rainbows and butterflies. It is hard, really hard at times, and I can see how it brings added stress and angst to siblings. Tom and I had a different experience, but that doesn’t discount how other siblings feel.
My autism tribe is big and vibrant with characters like you wouldn’t believe, one of them being Danny Ryan. Danny is a fundraising extraordinaire with a heart of gold who has three sons, one of which, Johnny, has autism. Danny recognized the sacrifices his other sons made without complaints, because much of the family’s time and resources were devoted to Johnny and the support he needed.
Danny knew other families that were unable to afford sports leagues or band uniforms for their ‘typical’ children, because financially they were strapped paying for therapies and other out-of-pocket expenses for the child with autism. He knew he had to do something, so his family founded Unsung Siblings, a nonprofit that provides scholarships and grants to recognize the effort and sacrifice that the family members of those with special needs make every day. The foundation distributes funding to individuals and relevant charities and nonprofits to ensure the ‘unsung heroes’ in the family are able to receive the education and opportunities they so rightly deserve. He always says, “I chose to have children, I enlisted. The siblings were drafted into this and are the true heroes.”
Newly created, Unsung Siblings has already made a major impact on the lives of special needs families, having committed to high school tuition for multiple siblings and even raising funds for a service dog. The organization plans events for ‘typical’ siblings, like baseball games, where kids can go and have a little fun at an event that their family may not ordinarily attend. It also gives kids the chance to make friends with other kids who understand them. These relationships are priceless.
My oldest brother Tom is a role model for me, and I look up to him more than he’ll ever know, but we both feel so lucky to have each other. Our parents can’t live forever, and they deserve time in their golden years to enjoy the life they created for themselves. I’m so glad that Tom, Jeff, and I are in the boat together.
Unsung Siblings is the first real opportunity that has afforded me the chance to ‘pay it forward’ and hopefully support other siblings just like me. Given our varied life experiences, special needs siblings are just different. Maybe we are more protective, or sensitive, but either way we have to look out for each other, and Unsung Siblings is a vehicle to do just that.
If you would like to support Unsung Siblings, you can use code UNSUNG when you order popcorn and 50% of your purchase will go toward helping them continue to support siblings of those with special needs.
Alison is a PR sage, beautiful human, and dear friend of Double Good.