How Special Needs Kids Teach Us We ALL Count
“WHY WE CALL HIM MOCHA”
A BLUE BlogBOX Entry with a little help from YELLOW
FIRST: We call him Mocha for his protection.
One day he may want to distance himself from the words we write and the songs we sing and the videos we create. These are our words and experiences as we learn to deal with Autism. But for the most part, they are not his words. And we want him to have the right and the opportunity to discover and express his own identity one day. So the name we share with you is not his. It is ours. When we discuss our lives with you, we call him Mocha. For his protection.
Although we are writing a book about him because we are so proud of his accomplishments ... there is a reason that the school system hesitated so long and hard before assigning him the diagnosis of Autism. We write this book partly in hopes that one day no stigma at all will be attached to the word Autism. But that is not this day. And no day in his life will likely be free of stigma either. The anxiety and mythology attached to Autism will likely take generations to pass away. And your help will certainly be needed to help erase the stigma. Before it can pass away, a whole lot more of us will need to learn to be honest, really honest, painfully honest about why Autism scares us so *damn* much.
Autism is so scary, mostly because it involves the brain. And while the brain serves as the core of our identity ... we don't even begin to understand it. It is only very recently in the history of human existence that we even started connecting our identity to our brains. And every time our brain behaves in different and unexpected ways it can be terrifying. Whatever we may think about racism and sexism and classism, there is a part of us that is aware of this fearful reality: Those who are brain impaiRED are the single most marginalized, even oppressed group of human beings on the planet. Oh how we wish that were not true. It is most certainly not our intent. But I challenge you to consider that it, indeed, might be reality.
SECOND: We call him Mocha because it suggests an obscure and uncommon color that, still, is an important part of the whole color spectrum.
This helps us focus more on the central word, of ASD. Spectrum.
"Spectrum" actually helps us understand our son far better than the words "Autism" or especially "Disorder". We love the beauty of a Rainbow. In that great diversity of colors every single tint and hue serves some important purpose and function in our world.
We also appreciate the need in our world for the grays and the Browns and the mochas. Most of us learn about color through the three PRIMARY colors (BLUE, RED and YELLOW) and the three Secondary colors (Purple, Orange, and Green). All of us need simple entry points to help us appreciate a spectrum. But these six colors do not fully define a spectrum. They only help us begin to appreciate its existence.
And Mocha is likely never a color you have looked for in a Rainbow. You might not have any idea where the color Mocha even fits as RED passes through Orange into YELLOW and then through Green into BLUE and then past Indigo into Violet. For that matter, where does Brown or Black fit in the Rainbow? Unless you are a graphic artist or physics major, we don't have any reason to study the spectrum in that much detail.
We think of Spectrum Diagnoses in a similar way. As we think about how the brain typically functions, Autism is one of those colors that we don't usually notice and rarely thing about. At least until somebody brings it to our attention. And that's why we call him Mocha. So that when you hear the word Autism Spectrum, you might think of him more like another useful color in the Rainbow than a brain function disorder.
THIRD: We call him Mocha because we have spent up to six hours every single week at Starbucks or one of its sister stores, clutching a cup of Chai or Coffee or Cappuccino as we wait for him to finish yet another hour of therapy.
We call him Mocha because of the hope that has formed within us as we sat at a table with a helpful friend or family member, telling our story, staring at the top of the frothy cup of mocha instead of looking them in the eyes.
It is amazing how much support can form over one of these fancy cups of coffee. We are pastors and counselors who have experienced far more healing over a Mocha or a Latte than in any Worship BOX or therapy center.
And I believe as much healing for you and your child can come through sharing even one cup of your favorite beverage with a dear friend or caring family member than a thousand professional sessions with the most talented and creative expert. But it usually takes quite a few cups to transform our most important relationships into supportive relationships. And quite often professional help can immeasurably improve, even, or maybe especially, the best of relationships.
When we have been given the gift of a Special Needs child, the strategies necessary to thrive are simply not ordinary. They are extra–ordinary. And these strategies will tax even the best of relationships. But they also provide the impetus for building and establishing something far far better than we could ever have imagined. Unfortunately, not all of our important relationships will be willing to join us in this kind of growth. But with each painful realization like this, there was also good news, maybe even tremendous news! For there is always somebody in the world looking for just the kind of extraordinary relationship we seek.
And yes a cheap cup of instant Folgers can work just as fine. But we want you to strongly consider how hospitality works in our world today. And the power of a table and a beverage and a tiny plate of delicious food ... when we share it with somebody we know cares about us ... or at least we hope cares about us.
FOURTH: We call him Mocha because that is roughly the color we expected him to be when he was born. Half Asian Indian and Half German Norwegian. Half Brown and Half White.
Yes, we expected something like the color of a steaming cup of a Starbucks Mocha.
Instead he is much closer to the color of an Iced Chai Latte … with extra milk … once the ice has melted. Some will consider him White, although they might never say so. Such things are rarely spoken these days in civilized company. Except by those who will never think of him as White … because there are beautiful darker Colors in his Family Tree. In his face they will see Color. Even though in mine they do not.
Once “YELLOW” and I fell deeply and irrevocably in love, we both knew race and culture would always be issues for our family. We would need to learn to talk about something that most of us have agreed not to talk about. Or suffer the consequences of awkward, uncomfortable silence. We had to learn to share words that could help us understand that we were both people of color, but only one of us was White. And how much baggage that one five-letter word would have for both of us. White. We would need to learn to find a voice for sharing what we each were feeling, hoping that the other would empathize with our perspective. Even though the very word "White" would often make one of us an "us" and the other a "them". We would have to learn to deal with color in ways that made most of our friends and family uncomfortable. And us too.
One day we will no longer deal with the words White and Color in this way. White and Black. White and Brown. Light Brown and Dark Brown. One day we will also see our shades of skin as a beautiful spectrum. But that day is not today. Today we are aware that he is not really White. Our child. And he is not really Brown. So we call him Mocha. At least until that other day comes. And we have better words for such things.
FIFTH: We call him Mocha because he gives us such great delight in the way he says the word.
Since acquiring language is such a labor of love for him, the way he pronounces many words is very unique. And Mocha is an excellent example. We are just so overjoyed that he has learned to speak at all. Every new word brings us great joy. We hope and long for the day when he will be able to use words with less effort … spoken … written … or digitized. We hope and long for a day when we won’t have to guess or anticipate so much what he is saying … or asking … or reporting. But today we delight in how far he has come in a few short cycles.
SIXTH: We call him Mocha because Autism is scary.
After more than seven cycles of dealing with Autism almost every hour of every single day ... including many mostly sleepless nights ... we don't even begin to understand what this word really means. Then again, we don't really know what Mocha means either. The ingREDients. The components. The causes. The cures. Just that it is sweet. And enjoyable.
So this mysterious word reminds us much more of our son than that other mysterious word. Now you might call that denial. And you might very well be right. But we simply love the way he says, "I - want - more - Mocha - please." So sweet. So enjoyable. Not scary at all.
So we invite you to meet Mocha. Our son. Our beloved. And love him. Too.
