Monday, February 22, 2016

Afterlife

The apocalypse came early. Our son was only 5 when the first bomb exploded in his life. It wasn’t his diagnosis day when we stood in shock while he played with toys in a pediatric neurologist’s office at one of the best medical centers in the world.  It wasn’t the labels they nailed to his person in an attempt to crucify him with the neurodivergence that made him forever distinguishable from his peers. The first day of the end of the world as he and all of us who love him knew it was when he came home from his early learning placement with a wound on his face and no note of explanation as to how it got there. That was the day we began the war of attrition for his safety and right to an education. But in the background, with a sound so soft that we could not quite hear it, a clock ticked away the minutes until what we called our life exploded, and life after the apocalypse began.

 TicTic…Tic

Incident after incident, the unexplained injuries, the insults, the racial slurs, the unwillingness to try to educate him because by their own account he was too disabled for it to matter.
All my worst fears welled up and spilled into my sleep, flooding it with the nightmares of threats and gunfire, and a cross burning on my uncle’s lawn. The legacy of the one drop rule reared its hateful head, and structural racism came to claim my poor son, attacking him in his place of learning where he should have been safe because the ghost of his Black ancestors lived in his mother’s skin and in his face and eyes. Harm came like the four horsemen and I fought back as only a mother who knows the sound of the whip, the pounding hooves of disaster and stench of hate against her child can…

 TicTic…Tic

We pulled him out of school. We consulted lawyers and learned they were more concerned with profiting off our son’s misfortunes than helping make things right. We hired educational consultants and learned they were more interested in good relations with the school district than fighting for the services and accommodations they admitted they knew our nonspeaking Autistic/Black/Indigenous/ American/Turkish/Italian/Hispanic son needed to achieve the dream of a “free and appropriate” education.  Our frustration when he came home starving each day and we couldn’t prove why built on itself until May 19th, the horrific day at an IEP meeting when they brought my lovely 5-year-old to the room and he hugged me and kept signing “food” and his cruel, disgusting teacher blithely said “um, we didn’t feed him lunch. He’s probably hungry. I’ll get some food for him.” It was 3 pm and I wanted to lunge across the meeting table and break my ages old vow of nonviolence and slap that monster WHY DID YOU NOT FEED MY SON WHEN WE PAY FOR LUNCHES IN ADVANCE AND BROUGHT EXTRA FOOD?!?  The shock of the matter of fact public revelation in the middle of a recorded IEP meeting robbed me of speech.

Tic…Tic…Tic

New school, more harm, more lies, classrooms segregated by race, seclusion, more veiled threats, and one day, that awful phone call from another principal her voice breaking “we’ve lost your son. We don’t know when he went missing. We don’t know how long he’s been missing. We don't know how he could have exited the building.”

Tic…Tic…Tic… 

Disinterested local police, district school administrators more interested in managing the risk of a potential lawsuit and we are the only ones shouting OH MY GOD WHERE IS OUR SON? His father begins running from his office, running from the other side of Maryland towards the place where they lost our son while I scream silently over and over because he loves cars and buses and the ebb and flow of traffic and it is a cold February day and one of them says he has no shoes and no coat and I collapse in a chair but I can't hear myself because my daughter is shaking me and screaming "what's wrong what's wrong!?!" Calling the whole world because NO ONE IS HELPING and there is a pond behind the school and he can’t swim

Tic…Tic…Tic… 
Found? Some stranger, a man, brings him, wet, scared, and asks “is this his school?” The principal stutters over the phone, “Someone found him. He’s okay; he’s with the school nurse.” I look at his big sister and say the words and we rush, running to get him. The principal stands as if waiting for a physical blow from me. I look down at her, not hearing or caring what she's saying and almost whisper, “give me my son.” My husband is howling at the superintendent of schools and howling at the train that seems to not be moving fast enough and howling with the fear that irreparable harm may have been done to his youngest child and only son. Meanwhile his sister and I grab our boy, my oldest child cradling her baby brother like porcelain, nearly carrying him out the school doors although he is over half her weight and so tall his head nearly reached her shoulders and we RUN out of that hell hole and now we sit at his doctor’s office, where all the staff heard and the doctor who should have closed shop an hour ago is waiting to do that awful exam for signs of rape and we wait, wait, wait while the doctor calms him and wait, not breathing and when he smiles at us with tears standing in his eyes and whispers “he’s okay, he’s okay” his sister and I hug one another and cry and cry until he becomes worried and begins to fuss. We hug him and dress him and place him in his special needs stroller and wheel him out and someone from the staff mumbles, “we have your insurance but today’s visit is free” and it is only then that we see that the staff is standing, tears falling silently from faces that once wore the indifferent and uncomfortable expressions of those who can’t tolerate disabled children but must serve them because they mean a paycheck.

Tic…Tic…Tic… Tic… …Boom went our lives.
 Because one thing some school districts know how to do is cover up and retaliate.  Public school is no longer safe; in fact, it never was. I look at the Montessori work we did on school breaks, do a consult with a Montessori teacher and then comes the gathering of equipment and the paperwork filing and the swearing under my breath that they would not put our son in danger again. How do I take this on? How do I educate him? I am overwhelmed. The room spins.
Boom!
Our daughter changes her college plans. She stays in Maryland. She changes her major. She helps me teach her brother, becoming his paraprofessional and his respite care provider when she learns of exhaustion in me so acute I collapse. My husband works for two for a very long time. He brings home his paycheck and moonlights to bring in mine. I meet my son, without barriers, without being told how to treat him, without anyone telling me I can’t handle him or he can’t learn or retain what is taught him for the first time since his diagnosis.

He is stubborn. So stubborn I laugh in frustration. So charming I am undone. So loud with the use of body language his presence fills a room, yet so quiet that I can hear our breaths in the silence of the day’s tasks.  He and I begin our quiet, bright dance of give-and-take. I was meant to teach him, but he patiently teaches me, to tolerate, to listen with my eyes as well as my ears, to see the places, things, textures that overwhelm him, to read and prep and comfort and let him go and grow.

Afterlife is silent. 
Beyond the blasted landscape of disappointment and destroyed trust, a green sprout of optimism fights its way out. Hope after harm. He slowly begins to smile again. Year one after the apocalypse and the screaming when anyone male enters a room stops. Year three is the beginning of food security. He begins to really believe he won’t go hungry even if he misbehaves. Year four and he’s laughing on FaceTime as his father uses his lunch break to see his son each day.
Father and son FaceTime while I act as IT support for our son. ©Kerima Cevik


Afterlife is safe. 
It is warmed with our happiness and peace of mind. It is filled with the few sounds our son makes. Laughter, sometimes nervous giggles, the sound of his running jumping and hooting, the silent gestures that comprise our arguments when he refuses to do his schoolwork. Year five sees a new growth. We spend the year teaching him to not be afraid of the dark. No matter what we sit together and hold fast to one another. Never secluded again. He learns to laugh at the night and look at the moon as his friend.

Afterlife cannot be forever.
He will have to return to the outside world and the cruel, racist, ableist, creatures that live in it. The greater world is his birthright and mine. He must survive the world beyond the sweetness of afterlife. Year five we try to ease him back but schools hold grudges and his is the first of a landslide of cases that nearly ruin a principal’s career. So off we go, to another county, to begin again.

Afterlife is greener now. 
Tiny verdant sprouts of hope for his future are growing into a lush green meadow of rye, ripening to gold, waiting for harvest. The understanding in this new location is as deep as the ignorance was in the other. Trust is building a path towards our son. Are the bricks leading back to inclusion? We just don’t know.
The apocalypse is not quite, but almost, forgotten.

Afterlife is beautiful. 
But beautiful Autistic boys grow up and need to become strong men. Time for mother and father to keep opening the path to the greater world.

Life is calling.


-----------------------------------
For my beloved husband and children in loving gratitude

With thanks to Selene DePackh, because who we are is not the pain we endure, but those  beautiful things we create in spite of it.

9 comments:

  1. Tears flow. As bad as it is for us, I know the deck is stacked against your lovely son in so many more ways. And those in power, those with control on funding, simply do not care. Revolution is needed. But how? Past 18 is even scarier. 21 is unimaginable.

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  2. I love you, and I love your dear ones as they are dear to you.

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  3. I dont' know how to summarize this in 115 character to tweet it with a shortlink...

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    1. Ableism. Racism. Pain. Loss. Hope. Love.

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  4. I am also biracial, with a black mother, and I have autism and cerebral palsy. I, too, was severely bullied by classmates from ages 5 to 13, and some teachers, one who hit me in the head with a ruler, after I had just been let out of the hospital for having seizures, threatening to beat all of the white out of me till I was black and blue, another who promised to stop bullying only to have the entire class call me a freak, and a principal who didn't take seriously an older boy's threat to rape me, so I just never went to the bathroom in school, my entire 6th grade year. My mother was a single mother. We wouldn't find out that I had autism until I was 29, and a rare case of doctors missing all of the neurological and physical disabilities that was mild cerebral palsy until I was 30. We changed schools, and threatened principals, got the teacher who hit me fired. Much of the bullying my mother didn't know about, until she accidentally discovered my diary. As I knew the problem was cultural. I was both not accepted into black culture for being "too white", too different, too uncoordinated, meaning no rhythm, too intellectual, in an age where the culture was dismantling itself as gangsta rap was becoming the dominant form. I was "too black" for white culture. I lived in New Orleans where self and economically segregated schools were de facto. Where the old tensions within and between races never died. Where what neighborhood you came from or went to could mean getting into a fight or not. My mother was a police officer, who taught me how to defend myself against bullies. So day after day, despite the zero tolerance policy, ironic, as the administrators had plenty of tolerance for people hitting me, biting me, attempting to stab me, kidnapping me to another part of the school...I fought back. I kicked and hit and punched, and the administrators were too scared of my mom to suspend me. But unlike in Revenge of the Nerds, when you fight one bully off, 5 more just come. I would be coursing with adrenaline only to have to stuff those feelings away and take a test, which I would ace. Today, I have ptsd, and distrust of black culture as it currently is. And I hate having that distrust. I want to fit in, but I don't. But I am also a survivor. I am ok. I no longer hate the whole world, or myself. I learned to see myself as beautiful. To see my gifts. To appreciate my blackness. I have my own apartment that my 72 year old mom helps me maintain, due to my difficulties with executive functioning. I am an internationally exhibiting artist. I have a boyfriend. I have friends. All things I thought were as far fetched as going to another planet. I felt like I was from the wrong planet for years, but have found my place on this one. But I can't say it was easy, or that I like the phrase,"What doesn't kill you only makes you stronger". The world is harsh, but there is hope. Thank you for sharing your family's experiences.

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  5. Same school district, almost 25 years ago. Small, delicate, white female. Who also came home with unexplained injuries, and hungry from missed lunches (lunch money or lunchbox stolen, no one aware). If she had it so bad, I can only imagine the horrors that are inflicted on males of color. We were fortunate. Glaring violations of her IEP led to private placements, the first and last of which were wonderful and enabled her to soar. The middle one, not so much. I wish you the best as you continue your journey.

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