KNOX
ROXS
KNOX
ROXS by jennifer white-johnson & kevin t.johnson jr.
A WORD FROM MOMMY: This zine highlights the beauty of nuerodiversity, breaking the stigma of racialized Autism in the life of Knox, my 5-year old black Autistic child. Autism is a beautifully complex cognitive, invisible disability that I am glad Homie House Press has embraced and is willing to represent. Now as a mother of an Autistic child I have made it a creative passion to dive into the complexities of his neurodiversity. Often the neurodiverse community are excluded from artistic narratives and creative spaces, and I find my role as my son’s mother is to help him embrace his complexities as I continue to embrace mine. In my own personal art practice of photography, the way I have embraced and taken hold of my narrative allowed me to not be afraid to let the world in and allow for my son’s story to become a force for healing. An Autistic person should not be limited by popular opinion of how they should operate, or be limited by the ideas others have regarding their abilities. Autistic voices should be included and not excluded in any public discourse on Autism! Advocate acceptance!
A WORD FROM DADDY:
The writings in this zine are a method to show uncompromising love, care, and unrelenting acceptance toward Knox. Some of the thoughts and reflections come from my 3 AM Theater blog. The blog came through a series of social media posts I’d make to give some semblance of humor to those early hours when Knox wouldn’t sleep when we first brought him home from the Neonatal Instensive Care Unit (NICU)
Over the past several years, I decided to take that same idea to highlight our son. Additionally, my goal is to not simply show my story as a parent - but his story as an Autistic child. The desire is to provide him the space to communicate on his own terms, whatever that entails, as he grows from childhood to adulthood.
The 3 AM Theater is an ongoing process of intense learning (about anything that is advantageous for him) and vigilant unlearning (concerning anything that could be harmful), as we continue as Knox’s parents to learn all we can to support, engage, and equip him against the discrimination and marginalization he will face on multiple fronts.
Welcome to Knoxverse. Where every family’s experience is different, but the commonality is that our children are not burdens and did not ask for any challenges they face.
They depend on those who love them to equip them to be successful, and to reenforce the fact that they are incredibly special and don’t need to be fixed.
Making sure that messages of acceptance and awareness are incredibly crucial for Black and Brown communities, as well as more avenues for advocacy and access to resources and support. It’s important that we don’t speak of damaged children, but that we speak of children deserving better understanding - and in doing so, work to remove the issues of limited diagnosis or available resources. DADDY
JOY
JOY
JOY
knox unscripted (This interview was recorded on July 28, 2018)
mommy: Are you a happy person or a sad person? knox: Happy Person! mommy: What do you want to be when you grow up? knox: Smart! mommy: That’s right! You want to be smart! mommy: What’s your favorite thing to do? knox: To hug! mommy: That’s awesome! mommy: What’s your favorite place? knox: Guela’s house!
mommy: Knox, what do you think about life? knox: Husband. mommy: Husband? knox: Yes mommy: Wow, what else do you think about life? knox: Wife. (Knox, then goes on a rhyming rant, saying wife, life, dife,) mommy: What makes you happy? knox: Me! Happy! mommy: What do you like to do to be happy? knox: To make a abc monster for halloween! (We continue Knox’s interview in another room with his Nana, after interviewing her asking her questions about her life, what makes her happy, and what she wants to be when she grows up, he asks to hold hands)
knox: Can we hold hands? nana: Yes, we can hold hands. knox: Can we get them up like a Christmas Tree? nana: Like a Christmas tree? Pointing like a Christmas Tree? knox: (laughs and giggles) YES! Pointing like a Christmas Tree! (we three proceed to hold hands)
nana: Would you like to say a prayer for everyone? Is that what you want to do? With our hands holding? Are you going to say a prayer for us? knox: Namaste! mommy & nana: Namaste. mommy: Oh my God Babe! knox: BABE! I said Namaste! for the live interview
Knox has had no shortage of labels. Premature. Perfect. Restless. Lively. Delayed. Advanced. Fickle. Rowdy. Exceptional. Exhausting. Gifted. Beautiful. Fearless.
There is so much wonder still behind his eyes waiting to shine. I am certain that the songs he echoes, the melodies he expresses constantly, the harmonies he finds so naturally - I am certain that there is a language all his own there too. When he fights against his own impulses to look into our eyes and smile, I am certain that he understands us and is working for us to understand him.
DADDY
Being Autistic is being true to yourself in a world that would rather you be invisible.
LIFE LIFE LIFE
And then the morning would come. Knox would happily hop out of his bed, and run back into our room. He would climb onto the bed, grabbing our faces - first his mother’s and then mine - and press his cheeks against ours. Without saying a word, he would present us with his innocence and his love. Without a word because of his inability at the time to say, ‘Good Morning’, or ‘I love you’, or ‘Mommy’, or ‘Daddy.’
From his breath to his waking moments today, he has proven that despite whatever hurdles he faces - he will greet them with a charm and an energy that is insurmountable.
DADDY
EXTEMPORANEOUS Knox sits on the bed shifting between watching instructional Spanish language videos, Wow! Wow! Wubbzy, and sing-alongs about geometric shapes.
“Trapezoid or trapezium!”, he frantically exclaims looking at me for approval. Before I can say anything he quickly moves through the video to the various sections. “Quadrilaterals!” He snickers. Then he laughs louder and louder until he almost falls off the bed. “Irregular heptagon! Tetrahedron!” He seems to love the names just as much as the shapes themselves.
When people hear him, seemingly at random, have outbursts that entail naming these shapes, or reciting math formulas they quickly ask how he learned those things, or why he is so excited to share it. I’ll go on to explain about his interests, routines, and repetitive behavior.
It’s when I mention Autism, however, that the conversation tends to shift. The initial happy surprise prompted by Knox’s outburst turns to a brutish curiosity, and a series of questions or statements tend to find their way out:
“Is he some sort of genius?” “What special gifts does he have?” “I bet he’s going to do so well in math.”
The general theme is that Knox being Autistic is now “okay” because he may fall into the 10% that may be categorized as a savant. Or he may be equipped with something that will allow him to be accepted because there is something more of value that he can offer. He has something that will make him “worth it.” It isn’t lost on me that as a child of color that need for value, and the ability to show that he can contribute to society at large, is expected and demanded.
Even if all Knox did was continue to perform front aerials from one couch to another in the living room, he would still be the same beautiful Autistic black boy he always has been.
DADDY
black b Autistic brave h singer l colorfu
brown c soulful hugger listener ful boy
LIGH LIGH LIGH
HT HT HT
I’m not going to advocate for a cure - Knox is not unwell. He does not have a disease. He is not a BURDEN. He is not in a prison of Autism. I will advocate for acceptance.
MOMMY
He’s a minority within a minority which means he’ll be under attack for all the things that make him unique. For all the things ignorant folks won’t accept and refuse to understand.
I’ve never believed Knox needed to be fixed, and I still don’t. I want to equip him to flourish, to understand his worth and strength, to appreciate where he comes from, and the skin he’s in.
DADDY
KNOXROXS An Autistic Photo Journey PHOTO LOCATIONS Washington D.C. Riverdale Park, Baltimore, New York City, Palm Coast
PHOTOGRAPHY & DESIGN BY Jennifer White-Johnson jenniferwhitetorres.com @jtknoxroxs
Front and back cover Adriana Monsalve adrianastories.com @amfoto
WRITTEN EXCERPTS BY Kevin T. Johnson Jr. & Jennifer White-Johnson @kevintjohnsonjr
FOLLOW KNOX’S JOURNEY Instagram.com/jtknoxoxs Instagram.com/the3amtheater
THANK YOU’S Our Heavenly Father, Our Parents, Grandparents, Family, Friends, Knox’s therapists, Educators, Advocates, Autistic people, Disability rights activists, and supporters up close and afar, this is for you.
Published in Baltimore, MD 2018 by Homie House Press adrianastories.com homiehousepress@gmail.com @homiehousepress
Printed in Sussex, UK. 2018