#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

Written Testimony Before the U.S. House Committee on Oversight & Government Reform

U.S. HouseCommittee on Oversight & Government Reform

TESTIMONY OF MRS. KERIMA CEVIK, MOTHER OF MUSTAFA NURI CEVIK

Regarding  The Federal Response To Rising Rates ofAutism

November 30, 2012

Main Concerns:

• Re-aligning funding to remove the racial, ethnic, gender and income disparities in access to accurate diagnosis, lifespan supports and services
•  Distributing research funding to increase research in assistive technology supports, quality of service provision, and directly addressing the needs of Autistic individuals and care providing families throughout their lifespan
• The importance of the Olmstead decision for my son and those like him
• Medicaid will be important to my son; continued federal governance is needed

Thank you, Chairman Issa, Ranking Member Cummings and esteemed Members of the Committee, for allowing me to share my family’s concerns and Autism experiences with you.

My name is Kerima Cevik.  I am a resident of Prince George’s County, Maryland and mother to Mustafa Cevik, affectionately known as Mumu, a wonderful 10-year-old boy with multiple intellectual disabilities. When our son was four, we took him to the Kennedy Krieger Institute for evaluation. After three years and four pediatricians telling us “let’s wait and see, maybe he’ll speak” our son was given a grim diagnosis that included the labels “low functioning” and “nonverbal Autism”.  We were told that our son would never speak; he’d never improve, that he would always need help with all his basic needs.  We were also told there was nothing we could do to improve our son’s situation. Then we were left to absorb this harsh reality about our child.

Since his diagnosis, we have seen our boy repeatedly surprise the experts. We videotaped our child doing things we were told he did not have the cognition to do. The team at Kennedy Krieger realized our son was capable of learning and retaining what he learned. He was in fact, not as he appeared. We were told we were at the bottom of the developmental mountain with our son. But he showed them differently. What we’ve learned about our son is that he has the ability to achieve whatever he goal he sets for himself despite the severity of his disabilities. And each developmental roadblock he passes drives us to fight that much harder for his right to respect, acceptance, literacy, and his right to gain the intensive supports he needs to help him be as independent as possible throughout his lifespan.

Our son is very brave. He has survived abuse and neglect in school. He steps outside each day to a world where he is gaped at and made the object of ridicule. I am a woman of color, what our government has labeled “Black of Hispanic origin”. So I know what discrimination is. I cannot explain why this hate exists to my son. He senses it however. He faces racism and ableism patient and unfazed, because he knows he is loved and accepted at home. He has made great strides despite not being allowed to benefit from the treatments and therapies that are supposed to be available at his school and in his community.

My son’s story is not unusual for special needs children in families with racial and ethnic differences. So I was disappointed when I heard a medical professional testifying that late diagnosis and disparity of care were the result of episodic medical visits to pediatricians by minority families.  Racial bias in health care and education is well known and I expected that to be addressed by witnesses at this hearing and it was not. I am respectfully requesting the committee invite witnesses from a broad demographic, who might be able to give testimony about the experience of racial, ethnic, and gender differences and how this directly impacts supports and services for Autistic individuals who are also minorities or women.

It angered me to hear some of the testimony at the hearing because our son is our pride and joy. He is an amazing human being. His strength of will alone is humbling. Is it easy to not work outside the home in order to teach and care for him? It is a great deal easier than what my son deals with each day of his existence. And yet he gets up and jumps into life with all the joy the rest of us may sometimes lack. He deserves better than being called a burden.  He is not a “damaged child”. Autism did not take our son away; our son is Autistic and is learning to meet and master his challenges. I cannot get up in the morning and remove my dark skin; I expect the world to accept me as I am, because my skin looks good on me. While the devastating historical attacks on the self-image of dark skinned people have created a market for skin-lightening treatments, “curing” my dark skin is not the answer. Nor can my son’s brain be removed from his body; it is part of who he is. The answer then, is to accept him as he is, and help him meet the challenges his neurology might present him. The Autistic ability to persevere is giving him the will to work to master skills many of us take for granted. And if funding is balanced and distributed in such a way that my son and all those waiting for services are given the supports and accommodation needed to be fully contributing members of society they will not disappoint. Our son’s continuing story is proof that motivation, will, and courage are the ingredients of successful people.

Funding for Services and Supports

Research is a fine thing and I support it; but our son and his peers will not benefit from any research currently being done because this research is not in areas such as better learning approaches, life skill acquisition, Autism specific healthcare and more efficient and affordable assistive technology. There is very little research on the health profiles of individuals on the Autism spectrum. And what caused my son’s brain to be wired differently and whose fault it may be is probably the least urgent of the questions he needs answered. Autism’s primary challenge is communication, and yet no research dollars are invested in assistive technology and education strategies to maximize literacy in nonspeaking Autistics. I fought to get a single assistive technology evaluation and this evaluation resulted in the professional opinion that our son could use an iPad and TouchChat App as an affordable speech device. He is learning to use it now. This single event could change the entire quality of our son’s life. We must somehow afford a second iPad device and the software to have on hand as a backup communication device should his present device be damaged. Families are borrowing money, fundraising, trying to do anything they can to get the equipment they need for their loved ones to communicate. Imagine how we feel when we are told that funding for iPads and iPod as AAC devices is not approved but funding for a $10,000 dynavox device and the requisite supports and equipment needed to make using it feasible is. If the funding spent on awareness campaigns was spent on iPads the impact on the %25 of the Autistic population that needs communication support and literacy would be life changing. Where funding goes and how it is used in our community concerns us.

Because our son is learning to use an iPad speech device, someday he might be able to testify about his needs directly before your committee. Many older children and adults on the Autism spectrum who do not have verbal speech are erroneously labeled “low functioning” and thought to be incapable of learning. We were told our son would always have the mental age of a 6 month old. His life is changing because we ceased listening to what he could not do and began focusing on what he could.  Shouldn’t more than 2% of funding go to helping our children and Adults on the spectrum become more independent? Much of the aggression associated with some Autistic nonspeaking children and Adults resolves itself when these individuals are given a means to communicate. Yet research is lacking on Autism and literacy.

The Olmstead Decision

When our son was first diagnosed, we were told that at some near future date, we would be placing him in an institution. If you are a parent, probably one of the most horrific things you could be told is that it might be a good idea to institutionalize your toddler. I am so glad we did not heed that advice but instead sought support from the Kennedy Krieger Institute and other resources to help our son. He has made greater improvement at home and in his community. While many of his peers are on medications to reduce anxiety and regulate sleep, he is medication free and is receiving professional help to manage the overwhelming sensory input he deals with daily without medication. Unfortunately life in institutions often came with medication used for chemical restraint, and for many of developmentally disabled children heartbreaking abuse and neglect. Funding for community-based care allows families like ours to be educated care providers and our children to live in whatever degree of independence they can. Whenever a vulnerable population is made to be dependent on an institutional style care setting the risk rises for abuse. The Olmstead decision has saved the lives of hundreds of disabled children and adults and is creating environments that allow us to see our children in our schools and communities and not shut away and harmed. The benefit of my son being out and about in his wheelchair is that his is accepted in his community. Our son is an active part of his community everywhere typical children are. The only way to end the maltreatment of developmentally disabled children and adults is to end segregating them. The idea of our son, after having come so far, being forced to live in prison-like conditions because he is disabled is horrific to me. The federal role in assuring that our son and all those like him are not imprisoned in the guise of providing housing supports because they are in the profoundly disabled category is critical.

A final concern about Medicaid Funding

Although our son is not currently a Medicaid recipient, his degree of disability dictates that at some future date he will be. Many of his disabled peers are able to have the critical medical support services they need through Medicaid. Please do not reduce the role of the Federal government in Medicaid services.

Thank you for your time and consideration.

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