AutisticWhileBlack: I've Got This

Note, this happened last year. Our school system is closed and virtual this year due to the pandemic. kc                     It happens every few homeschool reviews, but each time it happens, especially when I’ve been up all night with an under the weather disabled teenager, my heart sinks. When I reached my table and greeted the reviewing officer, I say “my son has complex support needs and is a nonspeaking autistic teen.” “My daughter’s a BCBA!” she answered. “We have an Asperger’s program at our school.” “I’ve got this.”
                                                  I grit my teeth and wait. I know what’s coming and I’m so sleepless! I just can’t today. Not today. And away she goes.                                                                

What follows is a long lecture about how incompetent I am to educate my own son. She barely flips through the binder in front of her. I wait for her to pause. “This is his curriculum,” I say instead of responding to something that is actually not legal for her to say to me. I begin flipping through the binder, showing her recent photographs of Mu doing activities, the comprehensive grade report from his online school complete with time spent on each subject lesson, dated, and accompanying worksheets. I start showing his microscope, science lab equipment, apps, books, music and art curriculum, language reports. She finally starts looking at the books and comparing the worksheets to the lesson reports. “Um, well.” “His name should be on the grade report.” “I can’t print anyone else’s grade report out but his, that is the way the online reporting system works.” “Would you like to see the grade report from the online site directly?” (I begin searching for the website on my cell phone. I have only slept two hours. I am trying to hang on to my patience.)

“How old will he be again this coming year?” she asks. “He’ll be 18,” I answer, knowing she knows when he will turn 18 from his portfolio in front of her. I know what’s coming. She answers “18 is a big year.” “We can do a lot more for him you know. He can attend school until he is 21.”

I wanted to shout “Let’s go over what public special education has done for him until the moment it nearly killed him!” Instead I patiently, painfully, again, repeat the story of how I, a staunch believer in public schools, a product of the public school and DoDDs school systems, decided to give up my job, stay home, and home-educate my disabled Black son.

Her smug expression paled, then blanched, then she gasped. Tears came unintended to my face, but I went on, discussing all the harm that led up to the day they “lost” him at school, in the most restricted education environment. How he was “found” by a stranger, an anonymous “member of the local community” who caught him wandering in traffic, a seven-year-old boy who used a wheelchair because of his unsteady gait, who supposedly did not have the OT skills to open a child safety gate, who at the time he went “missing” was in a classroom with a special education teacher, two paraprofessionals, one paraprofessional directly responsible for only him, two classroom aides, and a speech pathologist. A non-speaking autistic little boy who was impossible to miss because he was then in the 98th percentile in height and weight compared to his peers. The school’s story that changed from the telling to retelling, of how long he was missing before they notified us, of why the police weren’t called to search for him, of who found him, of where he had been found [he was found at a nearby pond/ no wandering in traffic] of why he had been washed and redressed and fed grape juice before calling us, of why he was wandering outside on a rainy and windy February day with no shoes or coat, of why he had no shoes or socks on in his classroom in the first place.

I had to repeat to this thoughtless, horrible, ableist woman who decided she knew the story of my son’s life, what it feels like when you are a mother with a heart condition who gets a call that your only son is missing and has been missing for an undetermined length of time and your daughter hears a sound come from your mouth that cannot possibly be human, and you don’t remember but suddenly you have called your husband and told him they have lost your baby and your husband grabs his coat and begins running, he runs out the door of his office at Johns Hopkins, runs to Camden Yards station, runs for the train and calls the head of PGCPS and roars that if a hair on his disabled son’s head is out of place, if they don’t find our boy, he would ensure that he won’t be qualified to be so much as a janitor of PGCPS, he will haunt the man the rest of his miserable life and they had better find our boy now and tell us why we weren’t told when this happened.

And I tell this arrogant woman how my daughter picked me up from the floor and we grabbed our coats and ran, ran for a taxi and told the man driving hurry, hurry our boy they had lost our boy, and how the police shuffled us from one phone to another and hung up on us and then I asked her if she knew what it felt like to call your son’s pediatrician crying and have the man tell you that it was best if he did an exam for signs of rape, and when he says your son is okay you hug your daughter and son and cry and cry and now the nurses and staff who stayed late to wait for the outcome are crying and saying “no copay today” and now the woman has blanched chalk white and remains quiet.

She finally begins really reviewing his portfolio. “You've done an amazing job here, “ she says, her voice breaking. “How..” “My daughter,” I reply. “After the final school incident, she changed her major.” “Went back to school and got a master's in special education specializing in complex support needs and low incidence disability.” “She helps with curriculum and supports my instruction.” “My husband provides the technology and finds things like the microscope that displays on his computer screen. “ He is also the support for my son’s adaptive P.E. work. “
She writes approval for the portfolio silently. She says, “we aren’t that county.” “This would never have happened in our school system.“ “I have been told this,” I answer. “But he is my only son. The last child I will ever have. I risked my life to give birth to him. I can’t take the risk he’ll be harmed again. “

Another brutal portfolio review is over. I leave, fighting back tears, thinking, “don’t worry son, we’ve got this. “

#AutisticWhileBlack: Against The Miseducation of M. Cevik

“When told we could not be educated, we went out in the woods, we dug a pit, and when somebody learned to read, they’d sneak out at night, go down in that pit with a light, and teach [others] how to read, because it was that important.” Today, for black home educators, “it’s still that ‘each one, reach one’” mentality, she explained. “It looks different, but it harkens back to who we are, who we have been in our educational history.”

Cheryl Fields-Smith
Associate Professor of Educational Studies
University of Georgia 

The Radical Self-Reliance of Black Homeschooling

I watched social media bloom with the photos of other people's disabled children ready for their first day of school. From the parents of twice-exceptional autistic offspring to those who have what they feel is a great school or outstanding teaching team for their nonspeaking children, the parade of photos with running commentary from proud parents was a conundrum for me. I was happy for all of those families but I understood they had no grasp of how that display of pride, that lack of understanding of privilege would feel to parents who didn't have the advocacy or means or demographics to send their disabled students off without trepidation. Children and young adults were photographed and ushered off, everyone secure in their right to be safe and educated. I sometimes wonder what that sense of entitlement must feel like.

I am the Black home educator of my high support needs autistic son. This path to educating him was neither planned nor expected to succeed. I have my son to thank that so far, it has.

Electric Light and Switch built by Mustafa Cevik,  Image of a
snap circuit DIY project to build a light and switch completed
in the foreground. In the background, an instruction book with a
diagram of the project and written instructions can be seen.

Our enormous push against the miseducation of Mu is the latest episode in the history of how the Black and Brown branches of our family tree struggled to gain literacy and numeracy. As I am typing this, countless other people fight for the right to be literate in America, while countless others give no thought at all to having that right, because for their loved ones it is never denied.

Education is something our elders risked their lives for. I carried that weight when I joined the first generation of African American children to attend public schools after Brown v Board of Education of Topeka.

I was a girl brought back to her stepfather's hometown and forced into the nearest school in a neighborhood where we were the only African American family.  My older sister, younger brother and I integrated a rural, all-white school mostly filled with the offspring of farmers.
 One of the many moments in that history, during my early teen years,  happened when I sat watching the tiny black and white portable television my stepfather had built for us to watch in our rooms. The news showed mobs of white adults from Boston throwing bricks and whatever else they could find at buses full of students like me.

It was a sobering moment. All those people who might feel justified in lynching us for the skin we were in, feeling they were losing something by our gaining the same constitutional right to a public education they enjoyed.

Our first homeschool field trip was to beautiful Art Deco
Greenbelt. Mu is in a yellow winter coat, his college student
big sister is wearing a green AmVets jacket. They are facing
Greenbelt's mother and child statue. Image by Kerima Cevik

Then there was the moment my grandmother sat me down to have a serious talk about my honor roll winning grades. My grandmother told me she was proud of me, but I was to settle for lower grades. She emphasized to me that my life depended on not being significantly better than the white students. It was devastating to be told to pretend to be less intelligent than my white peers so as not to put myself at risk of bodily harm.

Public school for me and my peers was unjust and sometimes dangerous. Forty years later, the reality for many Black and Brown disabled students like my son seems to be equally unjust and at least as dangerous.

Our family learned the hard way that the reality of a Free Appropriate  Public Education (FAPE) equal to nondisabled peers, like the reality of an equal, and nonsegregated education, didn't live up to the promise of either the Individuals with Disabilities Education Act (IDEA) or Brown v Board of Ed.

 We had to argue for our son's right to FAPE. We fought to ensure his safety while he was trapped in school placements where IEP teams strove to gaslight us into believing that our son could not be educated, therefore services and supports for him weren't worth the school budget.

An image of a page from Mu's 3D textbook,
The Human Body by Miller and Pelham
displaying a 3D popup image cross-section
of the human heart. 

I have been homeschooling my nonspeaking high support needs autistic son since a series of abuses in school escalated to a point where his school principal called to say that while she was off campus at a scheduled meeting the staff had "lost" him. That day we nearly lost our son for good. The reality of public educational life for my son despite the protections that IDEA was meant to provide him left us horrified. We realized they had no real intention of educating him and his life would remain in jeopardy as long as we stayed in that county's school district.

We knew our son's degree of disability. We presumed our son was competent. We believed all children could be taught. We wanted him to be educated.

 We have been home educating for nine years. He's a teenager now.

This is the hardest thing I have ever attempted in my life.

In his first year of homeschooling, our daughter helped me find a certified Montessori special education teacher who recommended a special education curriculum and resources for building him a Montessori environment at home.   My husband began to buy equipment, school supplies, hardware, and software and acted as Mu's physical ed aide and Mu's sister became his homeschool paraprofessional while continuing her college education.

 We dove into his education passionately, perhaps against their miseducation of Mu and the harm done him by people who were supposed to protect and educate him.

Tyrannosaurus Rex's head bursts out of Mu's textbook
on Dinosaurs. These beautiful books combine stunning visuals
with information that is appropriate for all ages.

I was incredibly fortunate. Mu's big sister decided to get her masters in special education and make her specialization multiple and high support need disabilities. She and I now build curriculum and instruction to fit his individual needs as he grows up and she follows through to see how he is progressing. This kind of individualized education planning and life skills consulting would be unaffordable otherwise. Both my daughter and my husband have introduced all manner of tools and texts to enrich his learning environment. This has helped Mu relax and overcome a great deal of his hesitation for learning.

  I learned that home educating was different from any classroom teaching I'd done. It takes an extreme degree of dedication and patience from both teacher and pupil. You must adapt and accommodate for your pupil's disabilities.

You give up your rights to just being a parent several hours a day, seven days a week. You have to measure progress and sometimes begin again. You cannot give up. Your child is depending on you. What that means some days is both of you taking things one breath at a time. This is our narrative. No advice, no judgments, just knowing that we must synchronize the ebb and flow of facilitating and absorbing learning without preconditions or forcible compliance. We reached this moment one breath at a time.

 Some parents are great at getting their children what they need within this broken system. Others are great at supplementing where the system fails. For Black and Brown parents choices may seem limited, but in the age of technology, enrichment exists if we know where to look for it. I have had a very singular life, and part of it gave me an odd collection of skills that helped me help my son. Most importantly, Mu wants to communicate. He wants to learn. So he puts forth the effort and I don't push him to some point of frustration.

Homeschool Adaptive P.E.,: Musti with his Dad in the pool,
 learning to float Image of a Brown young man with curly
brown hair floating in a swimming pool supported by his father,
a  white male with dark hair whose back is to the camera.
@ Kerima Cevik

There are activists out there fighting to preserve our children's right to FAPE in safer, nonsegregated public school settings. We believe in the work of those activists but found ourselves making the choice an increasing number of parents of Black and Brown children are making when public school districts fail their children. We were pushed to dig an educational pit, light a candle, go into that pit with our child, and teach our son what we know. What we have gained from being at home is understanding our son without barriers. We wake up knowing our son is safe; a happy and stubborn scholar who has regained his curiosity and zest for exploring and learning again.

Mu has taught me how to interact with him, and how to understand how he communicates. I have learned to help facilitate his learning rather than make his learning a series of demands with rewards for compliance and deprivation for shows of frustration and errors. When we see how this process empowers him, my fatigue dissolves, my regrets fade, I focus on my son, and I press on. Regardless of what the future holds, these years with my youngest child have been precious, no first day of school photoshoots or bragging rights required.

Time to light my candle and get back in that pit. Peace.

--------------------------------------
Further Reading:
Resisting the Status Quo: The Narratives of Black Homeschoolers in Metro-Atlanta and Metro-DC

Surviving Inclusion: At The Intersection of Minority, Disability, and Resegregation

On Surviving Inclusion

White Polo Shirts, Autistic Eyes

Multiracial boy whistling, sitting on brown leather chair  wearing a white polo shirt

 with the words "stand against restraints, seclusion, and bullying by teachers" 
© Kerima Cevik

About a week ago I was looking for a recent picture of my son stimming as my annual contribution to Paula Durbin-Westby's Autism Acceptance Year site, and came across one of my favorite recent photos of him. I decided that this would be his official Autism Acceptance Month photo this year. But why I made this decision requires the story of how he came to be the proud owner of what I believe is the only white polo shirt with the provocative words "Stand Against Restraint, Seclusion, and Bullying by Teachers" manufactured anywhere, to date.  That slogan was emblazoned on t-shirts and is now part of the history of the protests brought to the very door of the Judge Rotenberg Center in the course of a valiant war to release one of the few tapes of sustained torture that survived the purging of evidence related to charges brought against the center over  the many years of its existence. So here is the story.

Mustafa was one of the first customers to order a t-shirt created by autistic activist Lydia Brown, for those of us who were families fighting against the maltreatment of autistic children in school placements of all kinds. By this time Emily Holcomb was safe and Chris Baker's petition letter was being passed through all internet social networking channels. No one knew that  Cheryl McCollins would come down like the wrath of the Lord on the JRC in court and request the court release the video of the hours of torture her son Andre suffered at the hands of staff to the media. Everyone got their new t-shirts and was happy. The problem was, once the shirt was on him, Mu would not take it off. As happens with some children, he liked the shirt and wanted that shirt on every day. Of course, it began to fade from frequent washing. And there was no guarantee that he would like a new identical t-shirt as much. More importantly, he needed to dress more formally for some of the places we were going and that t-shirt was too casual. I posed the problem to Lydia and asked if they could do me a favor that might make both Mu and me happy.  The result is the white polo shirt in the photo above. Even though the writing beautifully stitched on the right breast area makes special needs service professionals wince, they regularly compliment him on the how great the white shirt looks against his dark tan complexion.

The magnitude of what this photograph means to me becomes clear when it is realized that although Mu did not choose to stop whistling while I was taking the photo, he did look right at the camera. He is, by nature, someone who does not look directly at anyone, so when he does it means you have been given a gift. This is also the first photo in which he is beginning to look like the man he will become. And that small sign of a different operating system, his autistic eyes, look for a brief instant directly into mine. If you have spent any time around autistic adults and they graced you with those eyes you will recognize the eyes of your children and catch your breath. The feeling is one of finding a long lost cousin of your child at a family reunion. You see the eyes, even in complete strangers, and you don't have to ask. Even when they don't say "I am autistic", you know.

 It came to me recently that one of the many reasons I care so much for all of these activists, and all those autistic children and adults they fight for,  is because they have, regardless of color, my son's eyes.  When they are able to look directly at me for an instant, it is a gift and a surprise, and at that instant, I remember my son and how much we love him.  I "see" my autistic son is growing up.

FAPE, Segregation, and Brown v Board of Education

“All warfare is based on deception.” 
― Sun Tzu, The Art of War 

"In these days, it is doubtful that any child may reasonably be expected to succeed in life if he is denied the opportunity of an education. Such an opportunity, where the state has undertaken to provide it, is a right that must be made available on equal terms."

- Chief Justice Earl Warren, Brown v. Board of Education (1954)


If you are an autism parent advocate, and you think any voucher system that locks your child away from peers is giving you educational choices and keeping your child safe, you are being deceived. 

Sometimes in the name of doing something right for our children, and with the best intentions, we parent advocates use our power indiscriminately and the consequences are devastating. Take Ohio's autism scholarship program for example. It sounds great doesn't it? Until a parent really understands the fine print. Things like: 


1. Parents are required to waive their child's right to a free and appropriate education (FAPE). 
2. The scholarship is less than the value of the funding provided for special education services in a public school setting 
3.  If the value of the scholarship is less than the services provided in a nonpublic placement, the parents must pay the difference
4. Parents of special needs children become part of the systemic segregation of school populations by degree of impairment, race and class
5. Parents inadvertently increase the defunding of already underfunded schools. 

So what parents are being asked to do is give up their child's right to be included in their community school, take less than what would be spent to educate and provide services for their autistic child in public school, and segregate their autistic child in a nonpublic school that may or may not be in their neighborhood, then pay the difference for that private segregated school.  What this law does is make ableism part of the system by implying to the children and school districts in Ohio that autistic children are not wanted in their own communites. They are not good enough to attend their own neighborhood schools. Like black children before Brown v. The Board of Education of Topeka, KS, autistic children are being hidden away from society and their parents are being bribed and deceived into helping segregate their own children.

Parents are signing away their children's right to a free and public education in the name of a safe school environment, or in the mistaken perception that nonpublic services are better. Being a student in a nonpublic school does not protect one from abuse and neglect.

 What other rights will we remove from our own children in the name of protecting them? 

Let me speak truth here. I was the black girl who integrated my 5th, 6th, 7th, and 8th grade classes in our school. Our family was the first black family to move to the upper middle class neighborhood in that rural area. It was not fun. It was not easy. But it made school staff and my classmates better able to tell their communities that black children were just children and deserved the same education in the same classrooms as white children. Our children should not be viewed as vulnerable creatures who if allowed to go out into our communities will be victimized. It is their right to go and exercise their right to be included as citizens of our towns and our nation. It is their Constitutional right. Disabled activists and parents fought and sacrificed for this right. If we are to advocate for our children we must understand they are people and not less than us. They aren't angels; they aren't babies. They are growing up. And it is our job to ask ourselves now what quality of life we want them to have as adults, and how we want our communities to receive them. Only then should we advocate and drive policy accordingly.

When parents sign away their autistic child's right to anything, they are doing them harm. When parents decide, for example, that because ABA works for their child that it should be the unilateral therapy method for all autistic children and work to drive policy to mandate funding for this one therapy method, they are defunding other peer reviewed therapeutic methodologies from reaching other children who need them. Children who might flourish under TEACCH, the Miller Method, DiR Floortime, and behavioral therapies like Collaborative Problem Solving.  I can't stress this enough. We need to review our priorities throroughly before using our power and privilege to make policy changes as parent advocates.

 We have no right to harm others to gain some expediency for our own children. This type of emotion driven policy advocacy comes from a mentality that I see in some parents. It permeates special education in particular. The first thing parents are told is to look out for their own child and let other parents look out for theirs. This is WRONG. Parental  rights in the IEP process are very limited. The only power parents have to leverage in this process is the power that comes from working together to improve outcomes and quality of services for all our children. The every parent for their own child mentality also enables the system of child abuse that is pervasive in both nonpublic and public schools charged with educating our children. Because it eliminates responsibility for reporting when witnessing harm to other special needs children. Parents don't feel they are stakeholders in the school system, so they don't report what they see if it is not their child. We need to accept that this is the case, and act today to make it stop. Making it stop will end the flood of homeschooling families and make our neighborhood schools a safe place for our children. 

Please read "A Different Kind of Choice: Educational inequality and the continuing significance of racial segregation" by clicking here to know more about why this concerns me so greatly.

The population of autism families I serve is disproportionately nonwhite, and depends on the minimal services provided in their public schools.

It had been my plan to keep my son from public school and continue to homeschool him. Because of these trends in parent advocacy, and the terrible harm this type of legislation does the populations of autism families that depend on FAPE, I have spent the last year preparing my own son to transition back to public school. I will fight for inclusion despite his degree of disability  Am I frightened for my son? Yes. But I am more afraid of what will happen to him if he is not allowed to live a life with the same civil rights others died for us to have. I fought for my right to be accepted as an equal in this society. My son must be allowed the same opportunity. Only his presence will educate them. His absence will erase him.

Any variety of vouchering is a systemic method of eliminating our right to a free public education. When you lose a civil right, it is nearly impossible to get it back. I am literate and educated because of a Supreme Court decision that allowed this to happen. Read the paragraph below. Then replace the word Negro with Autistic.  Hopefully then you will all understand what the fuss is about.

SUPREME COURT OF THE UNITED STATES

---

347 U.S. 483

Brown v. Board of Education of Topeka

APPEAL FROM THE UNITED STATES DISTRICT COURT FOR THE DISTRICT OF KANSAS

---

No. 1. Argued: Argued December 9, 1952Reargued December 8, 1953 --- Decided: Decided May 17, 1954

---

Segregation of white and Negro children in the public schools of a State solely on the basis of race, pursuant to state laws permitting or requiring such segregation, denies to Negro children the equal protection of the laws guaranteed by the Fourteenth Amendment -- even though the physical facilities and other "tangible" factors of white and Negro schools may be equal. Pp. 486-496.(a) The history of the Fourteenth Amendment is inconclusive as to its intended effect on public education. Pp. 489-490.(b) The question presented in these cases must be determined not on the basis of conditions existing when the Fourteenth Amendment was adopted, but in the light of the full development of public education and its present place in American life throughout the Nation. Pp. 492-493.(c) Where a State has undertaken to provide an opportunity for an education in its public schools, such an opportunity is a right which must be made available to all on equal terms. P. 493.(d) Segregation of children in public schools solely on the basis of race deprives children of the minority group of equal educational opportunities, even though the physical facilities and other "tangible" factors may be equal. Pp. 493-494.(e) The "separate but equal" doctrine adopted in Plessy v. Ferguson, 163 U.S. 537, has no place in the field of public education. P. 495.(f) The cases are restored to the docket for further argument on specified questions relating to the forms of the decrees. Pp. 495-496.

Two Autism Stories

Several years ago, I attended a meeting of parents and care providers to discuss the lack of county services available for their loved ones on the autism spectrum. At the meeting, an African American medical professional told me something that still gives me pause: "Autism is a disability for the rich," she said. “Only the wealthy can afford the costs of the intensive early interventions we as parents need to help our children succeed." She continued, “As African Americans, we are disproportionately caring for our children on the spectrum as single parents, with limited means, and are dependent on institutions like our public schools to give whatever supports they can."

As I continue my three year fight for appropriate supports for my own child, I ask myself each day, “Was my acquaintance correct? No matter how diligently I try, no matter the effort I make, will I be unable to provide my own child with the help he needs because of financial and racial disparities?”

Two stories show this disparity of care, resources, and options in a way that leaves me with heartbreaking concern. A Journey into the World of Autism is a series of photographs with commentary, about an against all odds, full on battle for the dignity and civil rights of a 14 year old African American boy, Daniel Tuttle Jr. Daniel was given a diagnosis of autism when he was 2 years old. He never received early interventions or any support services. His battle for services is still being fought by a woman who is not his mother. She was his first daycare provider as an infant; when she heard Daniel's mother was out of work and overwhelmed trying to manage his care, she did not hesitate to go through the process of becoming his care provider.

Autism Lives Daily in Our House briefly outlines the story of Jack Drinkwine, a white child diagnosed with autism who is receiving intensive interventions and supports. He has teams of medical and educational professionals working with him to improve his ability to navigate his world. Jack's mother, a university professor, discusses the combination of therapies and supports paid for by a combination of funding that Daniel Tuttle's care provider could never hope to achieve.
Daniels is homeschooled and sent to a speech therapist. Daniel's only other therapy, administered by his care provider, is a GFCF diet and the basic set of the shoebox task system, the foundational exercises in the TEACCH method. Daniel's care provider continues to try to place him in a safe educational environment where he is able to adapt to the classroom and receive at least minimal services and supports. Meanwhile, Professor Drinkwine advises other parents to acquire the intensive interventions for their children that she has, never considering that many parents and care providers do not have the resources available to them that a family with two working parents- a university professor and a high ranking military officer- does.

Is this disparity of service placing African American children on the spectrum at risk for more confrontations with aversive behavioral management techniques, fewer educational and therapeutic supports and a greater risk for either institutional care or catastrophic encounters with the criminal justice system as adults? It is a chilling thought for me as I look at my dark skin and my deeply autistic son.


Please read both articles and let me know what you think:

A Journey Into The World of Autism
Autism Lives Daily in Our House

More on Daniel Tuttle Jr. from DC & NYC Photographer Eli Meir Kaplan:
Against the Odds