Like the spectrum itself, the stories of families with kids on the spectrum are vast. They range from defining autism, to the day-to-day family struggles, to the wonders of the rare child prodigy.
I hear and read a lot of these stories and most are factual, but I feel that many of them are missing the authentic truths of the people. Why? Because the sensational stories, the 'how to manage' stories, the 'what to expect' stories and the 'meet my kid' stories are easy to consume, specific to a topic or situation, and people really like to read them.
The Story of Story Tellers
These stories are descriptive, factual and help so many people find hope, support and information.
But, what about the people telling these stories? How do we thank them? How do we authentically show appreciation, care, and love?!
These people share their intimate experiences both as an outlet for themselves and to support others.
But the typical response can be superficial, or even unintentionally selfish, because facts are more immediate than truths. We crave instant gratification and we almost always see only ourselves in stories. So, we react mentally or reply physically with things like this...
"Wow, you are so strong and amazing" — The inspired reaction.
"I wish I was that strong and under control" — The envious reaction.
"Aw, I'm so sorry, your life must be so hard" — The pity reaction.
"I completely understand, my child (name here) does the same thing" — The empathetic reaction.
"You really shouldn't be doing that" - The cynical reaction.
Again, these responses aren't wrong. It's human nature really. We don't always have the time to see cold-hard truths and facts are just so accessible.
The Story Within The Story (The Truth)
Reading autism articles, blogs, and health journals led me to my first interaction with Kate and Cooper. Kate is the mother of 6-year-old Cooper, a kiddo (as she says), with nonverbal autism. Kate tells their story in many forms through her blog, website, and social media by the name Finding Cooper's Voice.
Kate communicates with an authentic voice. A voice so authentic, that stopped consuming facts and started to understand her/their truth. Finding Kate's Voice became the way we wanted to show our genuine appreciation for her candid story. I prefer to repay that authentic voice by speaking to her, directly...
So, hi Kate, I'm Jason, the founder of HealthBeMe. I want to say, thank you. In the most genuine and authentic voice that the keys on laptop will allow me to type, thank you. Your story is so important because of the way you tell it, not just because of what you say.
Kate, for 6 years, you have fought and searched for Cooper's voice. A search that has led to a connection more real than most people ever find in another human, over a lifetime. The difference between the level of genuineness that you have with Cooper and the level most other people have with the friends/family they love... your desire to find 'authentic', was matched by your willingness to take the time to find it. Overtime, you have turned your own search for the facts into a one awe inspiring truth.
You. Have. Found. Cooper's. Voice!
It can change or evolve over time, but the quest is where all of the magic happens. The search for purpose can't be quantified with facts. Those are merely ways for other people to justify your story through their own lens. You know the truth, because you have lived it. Purpose is found when willingness and desire work together overtime, to weed out facts in search of your truth. A genuine journey to find your most authentic self, your true north.
I can't relate to your story in terms of having a child on the spectrum, or a child at all for that matter. But, I can relate deeply to your story of having purpose. HealthBeMe is my purpose. I don't think it, I know it. And just like you, I have to work tirelessly to defend it, protect it, grow it, and refine it. It is a lonely journey at times. I get it. You aren't always understood or supported in the way you really need from time-to-time. Mainly because most people's desire to know the facts can distract you from what you already know to be true.
So this is a message to anyone who finds this. When you are reading an autism story or any other purpose driven story where people are putting their soul out into the world... take just a little extra time and seek the truth in these people's core, instead of simply being satisfied with the facts. You may not have found your purpose in life, but taking the time to see the authentic purpose in others lives has the potential to awaken yours, trust me. But don't simply take what you need from someone else's story. Leave a trail of authentic truths yourself and there you will find real connection and genuine support that you need.
Kate, This Is For You & Cooper
Each month, we honor a few of the amazing people with sincerely 'human' stories in the world of healthcare. Our goal is to always bring more care back to health. We don't 'raise awareness', we "Raise Careness". This month, we chose you two.
Kate, I believe that your openness in sharing your journey comes from the genuine and authentic relationship you and Cooper share.
So... as an act of gratitude for telling your real truth, we wanted to honor you and Cooper.
I wanted to show you that we are at least trying to capture the real Cooper and Kate. We wanted to give you that gift that we as humans need more of, to be understood.
I read your article, What Having A Child With Autism Has Taught Me which showed us just how important Cooper's room is to him, being able to be his authentic self. It's the place where Cooper can always be Cooper.
You taught us that Cooper can't be bought or bribed, that 'stuff' isn't important to him. We learned what matters most to Cooper. Just having people sit with him in his safe place. To play with trains, to read books, and to watch Cars. To simply be present.
So that's what we did last weekend. At our August Webe Day, we (Webe's) turned a photoshoot set into Cooper's room. We printed a near life-size image of Cooper sitting in his room and we then we just sat there with him. We told pieces of his story aloud. We showed some of the pictures and videos you've shared. We were just present with him and you (literally and metaphorically). You both have now been nominated as webe's!
Oh yeah, we also learned that Cooper likes to dance. So...
Kate, Cooper... will you dance with me?
Kate, we were honored to honor you! Thank you for being you and thank you for all that you do! Webe With Me! #godogood.
If you are flattered and also confused as to why we did any of this in the first place... you aren't alone, that is the typical response. We are a little crazy, but we are 100% committed to turning healthcare into human—care. That is our purpose. You, as a purpose driven person yourself, already know that being a bit crazy actually means — crazy inspired!