| TIFFANY PINCKNEY 23, starved by her sister, 2005. | ZAIN AKHTER 12, Strangled by her mother, July 2010 . | AJIT SINGH 12, forced to drink bleach by his mother. February 2010 | BENJAMIN BARNHARD 13, shot by his mother, August 2011 | BETTY ANNE GAGNON 48. tortured to death by her sister and brother-in-law. November 2009 | CALISTA SPRINGER 16, smoke inhalation-chained to her bed by her father and stepmother, February 2008. | CHASE OGDEN 13, shot by his mother along with his sister Olivia, October 2010 | CHRISTOPHER DEGROOT 19, locked in apartment set on fire by bis parents, May 2006 . | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | DANIEL CORBY 4, drowned by his mother. March 2012 | FARYAAL AKHTER 2, strangled by their mother, July 2010 | FRANCECCA HARDWICK 18, locked in a burning car with her mother, October 2007 | GEORGE HODGINS 22. shot bv his mother, March 2012. | GERREN ISGRIG 6 years old, died of exposure after his grandmother abandoned him in a remote area, April 2010. | GLEN FREANEY 11, strangled by his mother. May 2010 | JEREMY BOSTICK 11, gassed by his father. September 2009 | JEREMY FRASER 9 years old, died of recurrent leukemia alter his mother withheld the medication that would have saved his life. March 2009 | JORI LIRETTE7, decapitated by his father, August 2011. | JULIE CIRELLA 8, poisoned by her mother. July 2011 | KARANDEEP ARORA 18, suffocated by his parents, October 2010. | KATIE MCCARRON 3 years old, suffocated by her mother. May 2006 | KENNETH HOLMES 12, shot by his mother. July 2010. | KYLE SNYDER 9, shot by grandmother, October 2010. | LAURA CUMMINGS 23, tortured to death by her mother and brother. January 2010 | LEOSHA BARNETT 17, starved to death by her mother and sister. May 2011 | Melissa Stoddard 11, tortured to death by her father and stepmother.December 2012 | Matthew Graville 27, tortured to death by his half brother, July 2012 | NAOMI HILL 4, drowned by her mother, November 2007 | NOE MEDINA JR. 7 months, thrown 4 stories by his mother, August 2011 | PAYTON ETTINGER 4, starved by his mother, May 2010 | PETER EITZEN 16. Stabbed by his mother. July 2009 | ROHIT SINGH 7, beaten to death by his father, September 2010. | ROBERT ETHAN SAYLOR 26, asphyxiation during catastrophic police encounter, January 2013 | RYLAN ROCHESTER 6 months old, suffocated by his mother because she believed him to be autistic, June 2010 | Paul Childs III 15, shot by police while holding a knife pointed at his own chest, July 2003 | SCARLETT CHEN 4 years old, drowned by her mother, July 2004 | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | STEVEN SIMPSON 18, doused with tanning oil and set on fire during his birthday party by party crashers, June 2012 | Steven Eugene Washington 27, shot in catastrophic police encounte. March 2010 | TONY KHOR 15, strangled by his mother, October 2009 | Torrance Cantrell 8, killed by church parishoners during a brutal exorcism, August 2003 | TRACY LATIMER 12 years old. gassed by her father, 1995. | WALTER KNOX HILDEBRAND JR 20 years old, died of a seizure induced by his brother's physical abuse. November 2009 | Alex Spourdalakis 14, stabbed to death by his mother and caregiver who premeditated his murder and also killed the cat, June 2013 |ZAHRA BAKER10, murdered and dismembered by her stepmother and perhaps her father. October 2010.ERNEST VASSELL10, shot in a catastrophic encounter with police. September 2011.

Friday, June 20, 2014

Dear Mustafa, We Are Brothers

 "Hi brother Mustafa we are brothers . I am here...."
-Henry Frost


I read that quote, part of an emailed message to my son, and did not notice for a good while that I was crying. I sat silently thinking, "Mu will want to frame this" then the tears impaired my vision. The respect, the understanding, the extension of the hand of friendship; it just overwhelmed us. I did not expect it. Help, even moral support, is not something we ever expect.

Four years ago, when I decided to homeschool Mustafa and search for as many adults like him as I could in an attempt to understand him and help him, I didn't foresee that such a young autistic person would think or worry about what was happening to my son. We were still being told that autistics and empathy didn't mix. We were assured other autistics wouldn't understand what my son was going through enough to type those words. I didn't realize how many autistics communicated the way my son is learning to communicate. I just wasn't given any expectation that I could even speak to autistic adults directly or that they would care enough about what might happen to my son to answer.

Mu has not been himself. The assessments have saddening him. The way they spoke of him while he was right there, no matter what we did to avert, warn,  and scold them or remove him from their voices, he heard it.  Hearing the litany of his presumed deficiencies and suffering the humiliation but not being able to defend against the ableism were breaking him down. The dislike of him as a person and a student who cannot simply be taught on a canned curriculum with half-hearted effort was apparent and it was becoming unbearable. We tried to help him weather this privately. Then suddenly, Henry wrote.

Henry understood everything Mu was going through. It made me realize autistic kids should be writing one another. This was how this great movement toward community began for autistics a generation ago. Maybe it is time for an "autistic big brothers/big sisters" writing project now. Who better to let our older kids know it will be okay? They have gone through these terrible humiliating processes and survived to live another day.

No matter what hell I think I'm going through sitting alone in an adversarial environment with at least 7 other people all talking at the same time, sometimes gaslighting, sometimes skewing what was said, other times saving up parental sentences to serve their own purposes, Mu will always have it worse. He will be eternally underrated and forever measured by how compliant he is rather than his capacity to learn.

So I am wondering if all of the autistic adults and young adults out there can help Mustafa and the younger generation by starting a safe space and posting public letters to them. Build a kind of bulletin board for autistic kids to read letters of support, solidarity, and encouragement on all those topics that need someone just like them who cares. Let them know others went through it and there is a light at the end of of the avalanche of others presuming their incompetence.

That light is understanding and friendship from their brothers and sisters in neurology.

Long live the neurotribes

Peace.

Tuesday, May 27, 2014

The Isla Vista Shooting: Correcting Focus, Ending Autism Scapegoating


"While Martinez said he is angered by the public’s willingness to accept mass murder as a way of life in America, he said he is not mad at Rodger’s parents.“As bad as I feel about this, at least people come up to me and say, ‘I’m so sorry for you,’” he said. “Who will say that to them? No one is going to say that.”....“I’ve been told that the shooter’s father has said he wanted to devote his life to making sure that doesn’t happen again. I share that with him,” Martinez said. “He’s a father. I’m a father. He loved his son. I love my son. His son died. My son died.”

Before I discuss the assault on autistic people and their families that takes place each time a mass shooting happens in a public place in general and college campuses in particular, I need to make a point about the root of the wider problem.

I am going to put the victims of the massacre first. Here are there names:
"Cheng Yuan Hong, 20, of San Jose and George Chen, 19, also of San Jose were identified as two of the dead and also Rodger's roommates.
Weihan Wang, 20, of Fremont was also stabbed to death in the apartment.19-year-old Veronika Weiss and 22-year-old Katherine Cooper -- both were shot near the Alpha Phi Sorority on Embarcadero del Norte. 20-year-old Christopher Michael-Martinez was gunned down moments later inside the I.V. Deli Mart on Pardall Road."
Six people died in the Isla Vista shootings. Seven if we realize Elliot Rodger committed a suicidal act. As usual, focus in not placed where it should be, on each of those victims and their families. Each time a tragedy of this magnitude happens and media begins to hyper-focus on the perpetrator, everything about that person becomes more important than the lives of the people murdered, and the media enables the next would be assailant to kill and be famous. We should relegate those who use murder as a ticket to posthumous importance in society to the role of perpetrators of a heinous crime and no more. Massacre victims are lumped together by their number, and used as a measure of the fear society should have for the perpetrator of the crime. This is exclusive to our country. If we wish to break this cycle of distorted focus and enabling we must value the lives taken more than the media ratings the life of the killer might generate. While there is merit in attempting to understand why Elliot Rodger premeditated and committed  this massacre, these reasons should not be sensationalized and served up for their entertainment value.

This single act of focusing on the correct thing, that lives were taken unjustly, would do more to prevent another massacre than gun control, increased campus security, or any other endless suggestions poured on the public in the aftermath of each such national tragedy.

A derivative of the media feeding frenzy of killer objectification is the traditional "othering" of the murderer. Because the more different and fringe the mass murder is from society the less we have to ask ourselves why a disproportionate number on young white males in this country feel murdering their peers and then killing themselves is some sort of solution to their problems in life. Saying such a person is just like anyone else his age is too uncomfortable. So labeling happens nearly the moment the catastrophic event takes place, even as the victims are known as numbers rather than people. The killer is made to be:
 1. Not "normal"
 2. If no history of mental health concerns are known, one is created to explain behavior
 3. If no label is found quickly enough Aspergers or autism is added to segregate perpetrator from his family and family members will jump on the opportunity to use this label to distance themselves from the murderer
4. People and government officials then lash out at mental health consumers and autistic children and adults in a twisted attempt to "protect" society from "others" who might "snap" and murder. 
The saddest irony of this distancing/objectification behavior in this case is that for those of us who are autism activists the name University of California at Santa Barbara is synonymous with the Koegel Autism Center. Meaning that if Elliot Rodger lived in this area, attended school, and received therapy the majority of his life, there is no room for "he acted a certain way so we always suspected he had Aspergers" statements. If this was the case, diagnosis would have been as simple as a visit to the Autism Center. Any form of autism is apparent from a very young age even in women (who are sometimes not diagnosed until later in life) if anyone cares to take their loved one to a neurologist who can determine this through assessments. Posthumous diagnosis is therefore beyond unacceptable, it is dangerous.

What we should be asking ourselves is if our culture is one that incubates and enables massacres, and how we can root out everything that is driving this horrific behavior on the part of young people. The cycle of distancing ourselves from the murderer while  posthumously objectifying him must end.

Most importantly, massacre should not be the catalyst for bashing autistic people; nor should it be a time for heaping further abuse on the mental health consumer.  We should understand that Elliot Rodger premeditated a series of ghastly murders and his victims did not deserve to die. He documented why he did so before he committed these crimes. His mother tried her best to prevent this from happening.  Now it is time to mourn the dead and begin the work of preventing this without bashing neurodivergent people.

I am particularly disgusted by autism parents who jumped on the Elliot Rodgers was autistic bandwagon. I am not sure what they hope to gain by placing their own children in direct danger of retaliatory harm by people who don't understand anything about autism except sound bites heard on media. It is actually our job as parents to protect our children by educating the public. All this awareness raising and fundraising should have all these parents knowing better and recognizing that it is clear from the youtube video that this young man was not on the autism spectrum. They have no right to enable those who are ableist to harm our children. I hope they stop and if they hate their children to this degree, find proper supports

Elliot Rodgers was a man who massacred six people. The horrific nature of what he did needs neither hyperbole nor assignation of labels that aren't his. We must accept that among us are people to murder and those people are not apparent by looking at them or scapegoating autistic people.

Criminal law in our society is constructed around the reality that any of our members might murder and after insuring that those suspected of killing others understand the crime they are accused of committing, those suspects are assessed for mental health concerns. Then we declare them fit to be judged for what they did and try them in a court of law, never labeling them autistic. Meaning we assume that most people accused of committing murder were in sound mental health and not neurologically divergent when they did so.

How is it that we act differently when the murders take place in a public venue and multiple victims are involved? It is wrong. And I expect autism parents to shout that it is wrong and protect their children, not buy into a dangerous habit that harms our entire community.

  That is all.




Monday, May 12, 2014

Not Like My Child: Parenting and Low Incidence Differences

I just read an article on a Facebook community page by an autism mom that was meant to be a heartwarming narrative of her autistic son, who is my son's age. She said he was special, but not. She goes on to proudly describe how he successfully navigates a social event and concludes by making it clear he is just like his siblings but he tells her not to be concerned that he is an intersected autistic preteen. He assures her he will be fine. Throughout the narrative, there is the mention of her son's race, and that his race will present challenges when he is an adult, just as it does for other Black males. She makes certain to emphasize he has worked his way to full inclusion, an opportunity to blend in with a "normal" school population.

The author describes her son with pride. Based on her descriptions in the article, her son seems to wear a function label (I intensely dislike function labels but need to use them here to make a point) that is implied as being "high". His label is autism, but the supports and services needed are considerably different than 13% of his autistic peers who are nonspeaking and have health and educational challenges in addition to different neurologies that prevent them from "passing".

Autism is described as a "low incidence" disability along with  blindness, low vision, deafness, hard-of-hearing, deaf-blindness, significant developmental delay, complex health issues, serious physical impairment, multiple disability. In addition, per the National Center on Accessible Instructional Materials , it should be noted that:
None of the disabilities listed under low-incidence disabilities generally exceed 1% of the school-aged population at any given time. The relative rarity of students with these disabilities in public schools often poses significant challenges for local schools struggling to meet their needs. Since they encounter these students so infrequently, most local schools have little if any knowledge of how to best educate these students, of what technologies are available to assist them, and of how to obtain needed and appropriate support services from outside agencies. All students with low-incidence disabilities thus experience a commonality: they are difficult to serve in current local public school programs.
I don't blog about high incidence disability. The author of the FB article's son, while falling into the same diagnostic and racial category as mine, is "not like my child." Yes I finally had to go there. My son carries additional labels that place him in a group that is rarer and has a  need for more comprehensive educational supports, accommodations and services. Although both boys are the same age and race, and carry the same label of autism, the expression of autism in my son is clearly not as it is expressed in her son. Thus the trope that frustrated parents who react to reading the prominently placed posts of those authors who wish to brag about the accomplishments of their assimilating children  just came from my mouth. This is something I've tried to avoid for the entirety of my blogging history.

I went there to make the point that there are pitfalls  to narratives from mothers about their children that they have a perfect right to produce and publish, but which tend to overwhelm the autism conversation at the expense of families and people who have low incidence disability profiles and are told they cannot set full inclusion as a goal despite the intensive supports that the IDEA is supposed to provide. Students who must not only fight for inclusion and respect among their peers in age, but must meet ableism head on because they can't make themselves invisibly average in a classroom.

Students like my son.

I once tried blogging in response to the plethora of blog posts about the lives of autistic children and  preteens who use verbal speech, but whose parents insist on speaking for them rather than having them speak for themselves. My husband and I used to go to parent support group environments, and parents would beginning immediately comparing their child to ours, undermining our efforts to help our son in order to make themselves feel better about their own children. "At least he isn't like your son" was the most common sentence we heard. True. My son has parents who don't measure him by the yardstick of how "normal" he is or how much he compares to others with similar labels. We measure his success by how far he's come from where he started and how much he is able to do for himself.  I need him to know that he exists beyond constraints that others, regardless of intention, place upon him by such comparisons. So I ceased trying to blog in counterpoint to those themes and just began writing and speaking in support of people like my son.

The idea that a child needs a comprehensive individualized education plan and more support than their peers within the spectrum should not diminish their right to be heard. My interest in the continuing battle the very courageous Henry Frost , who continues to fight to not only be included in his neighborhood school but to make his neighborhood school district a safe one, is the direct result of knowing Henry, who is older than my son, is very much "like my child." Henry's voice needs to be heard again right now, but I truly don't believe anyone is listening.

Henry is a student in a school district that has had three students "like my child" die, two of those students dying in the last year. These students died while in the care of the school system that has fought Henry Frost tooth and nail to resist giving him what the law says he should have. Henry Frost and his family are beyond brave. Read about what is happening to students "like him". It is not a heartwarming tale of hope for invisibility and "passing". It is what Henry is facing down in order to stand up for my son and all those "like him".  Don't know what I am talking about? Here watch this, but I need to warn you it is raw footage of a child dying on a school bus in Henry's school district. Read this, and this.

The narrative on autism  online was so polarized and rigid that I had to search through hundreds of blogs and autism communities before I began to find what I was looking for. People who were autistic adults and "like my son". At the point when I began to correspond with them and autistic professionals who worked with nonspeaking autistics everything improved for our family. If you are one of the many parents who read one of the endless articles out there by proud parents on how well their preteens are assimilating to main stream life, or one of the other articles of depressive despair written by parents of autistic children who have considerable challenges, don't give up. There are other voices out there, Voices that understand you, your loved one, the civil rights you are fighting for, and are with you. Not in despair, not in hubris that diminishes others in order to elevate their own. In solidarity and love. Let me save you some search time. Try the blog We Are Like Your Child by clicking here.

Henry Frost, and all those like him including my son, regardless of whether they are categorized with multiple, complex, low incidence disabilities have a constitutional right to a free and appropriate education with the supports and resources needed to accomplish that goal. All of our children have a right to go to and from school and be safe while they are being educated. This is not about money or the things the schools need to deliver that constitutional promise. It is about the legal obligation public schools funded by our tax dollars have to do so.

It is about inclusion, justice,  and human rights for all members of society. 

Peace.

----------------------------


For Henry Frost, in solidarity. I will always stand with you.



Tuesday, April 29, 2014

Expressing PosAutivity in A Negative World


"Dear Mrs. Çevik,

I have spent the past week of ESY getting to know Mustafa. He is a pleasant happy 5 year old. We have discovered he has developed his own gestural language. He is able to communicate his needs very well. There is no need to send lunch, unless you are concerned about allergies. He enjoyed his sandwiches, grapes and juice with his classmates. He had a great deal of fun today.  I have attached a list of supplies he'll need for next week's activities. I am looking forward to working with him.


                                                          Sincerely,
XXXXXXX XXXXXX, M.Ed"


Image of multicolored background with uplifted arms
and hands reaching upward  with the words
 Autism Positivity 2014 Flash Blog written in black
them
There was a time when my son Mustafa spoke Turkish. Turkish imparts more meaning with less verbiage. I believe this is why he chose Turkish,  despite hearing two other languages spoken in our home. When expressive language failed him. he created his own method of communication, using a combination of the simple ASL signs he was learning and gestures, sometimes grasping objects and putting them together in order get his message across. Once he entered kindergarten, al his attempts to communicate were ignored everywhere except at home. There was a push to invalidate his attempts because they did not fit into the definition of the language he was expected to speak. PECs were half heartedly presented as an alternative and we were asked to reinforce their use. When I asked how he was supposed to learn grammar from these cards, I was told it didn't matter, because according to professional opinion, he was not competent to create more than two word sentences.

How low would your frustration level be if you used every possible thing at your disposal to communicate and you were deliberately ignored?

When I say my son is heroic, what I mean in part is the way he handles the issues in his life like systemic ableism . Were I in his place, I believe I would meltdown repeatedly for hours on end. Yet my son gets up each day, and puts all his effort into finding any way he can to send messages to a receiver. Communication can only occur if the receiver accepts the message sent.

He is, unlike presumptions based on his labels, an incredibly patient preteen.  His frustrations are natural considering his circumstances. I didn't learn this overnight. It took directly working with him for years, looking at him based on what he did in homeschool and not what we were told to believe. He is not a secret genius. He is not, like Big Bird, eternally 6 years old. He is not a nonspeaking infantile angelic figure in a growing asexual body here to test my faith. He is an 11 year old boy, with the mischief, hopes, dreams, good days and bad of anyone else his age. He has great challenges and he spends each day of his life in a battle to overcome them. He needs three things to express himself; communication supports, a person willing to accept all avenues of message delivery from him, and that all those working with him assume he is competent to communicate expressively. He does not require verbal speech. He needs respect and the belief that if given the assistive technology and supports he needs, he can express himself.

Sometimes the world of activism is so gruesome and harsh, and so much negative news hits so quickly that it is overwhelming. I watch people get caught up in passionate battles to be heard, to get their points across because sometimes those points mean saving lives in the balance. But the internet distances and that can cause great harm. It creates people who don't really behave the same way offline. Hurtful nasty individuals who carry their unhappy lives online and attack others for no good purpose. I see deliberate posting of inflammatory content with the intent of spiking hits on social media. I see people looking for answers who are caught in the autism wars of groups with cult like followings and dangerous destructive agendas that condone murder and I feel myself reeling back from it all. I feel the need to unplug.

When I need air, when I want to find my center I look at my son. How tall he is now, the unmistakable mustache, the glimpses of a calmer spirit. All the professional warnings of puberty and its struggles notwithstanding, the mother who wondered what would happen when her son towered over her is now sitting beside him each day and breathing to the motion of his rocking in his seat, smiling when he reacts with joy at making himself clear. The pall lifts from my life because I remember he is the reason for what I do. He has already surpassed other's expectations. I feel the air filling my lungs. Exhaling feels like walking in sunlight.

Blogging was never for me. It was and is for him. It was to leave a trail of words to help him find his way to the reality that he was, is,  will always be, a loved person. He matters. In a world where his peers will always be measured by the worst moments of their lives, he needed to know, everyone needs to know, that our son's person-hood is measured by all the moments of his life. The joyful moments are so happy because we can look back on the where we began this journey and see how far we've come together. This body of work is a legacy for him to know, whether we are here or not, that we love him as he is. Not because we hope to change him. But because we can see him in his entirety now and we know he is an amazing person. He is a stronger person than I am. He perseveres. He overcomes, regardless of how long it takes him. He does not give up. These are the qualities of greatness. .

I could tell you that he uses a TouchChat HD somewhat to express himself. I can tell you that once all the other myriad medical questions he deserves answers to are addressed we will dedicate all our energies to this single task of helping him master the AAC app. I can tell you all about how occasionally but rarely,  he has spoken words. His voice is changing. We are surprised to learn that his changing voice is becoming a true baritone. But that is really not what this is about. This is about telling you that I believe that my son is competent to express himself without verbal speech. His performance art in communication is patient and beautiful.

I am positive that my love for my son is returned. He demonstrates that each day. Without saying a word. By his patience, an arm around my shoulder at movie time,  walking back into a room to hug out an apology for something gone wrong. I know he has very few people he cares for in this way. I am aware therefore, of how very important it is to be one of those he loves.

I cannot impart on you what it does to an autistic child when you understand them. Their entire quality of life improves. They gain confidence. They begin to self advocate. They try their best each day. Many parents have stories of learning their children must have been in excruciating pain for days weeks even months and not been able to communicate it to them. Looking back on the meltdowns and behavioral issues then has them wondering how any child could endure such things without melting down continually or lashing out more frequently. Behavior is communication.

If you want your life with your loved one to change for the better, start by changing how you feel about them. They know, in your body language, if you are disappointed, angry, ashamed. When you have done that work on yourself, begin to observe your loved one. What happens before a crisis. What happens before joy. Then do whatever is necessary to help your child complete the communication cycle with you. Be the open receiver to the message.

Love your child. Or as my late uncle John used to say when we ended our phone conversations.

"Take care, kid. Enjoy your child."





Friday, April 4, 2014

Open Letter to Sesame Workshop

Dear Ms. Betancourt,

I read today that Abby Cadabby and the characters of Sesame Street will be "lighting it up blue" and collaborating with Autism Speaks and my heart broke for my son. I know that as Sesame Workshop’s senior vice president for community and family engagement you may feel you are embarking on a great project. But this is devastating for the thousands of families like mine who used tools already in place that were developed by Sesame Workshop and PBS to help our children learn. I don't know what prompted this partnership but it concerns me very much because the goal of Autism Speaks is to eradicate my son. Left up to Autism Speaks, he would not be alive right now. His degree of disability would mean in their world of medical model based prenatal testing for autism that he would not be acceptable as a perfect baby. So Sesame Workshop will be assisting in the process of increasing the resentment and hatred directed at my son. As if this were not enough, Autism Speaks, who have labeled my son and all children like him some manner of body snatched replacements of  "normal" children, will profit from your brand? I just don't understand.

My son and his peers are given no representation in their organization. His existence is used as some sort of a detriment to society. Autism Speaks continues to present him as someone who should be feared or pitied for who he is.  Sesame characters have always been in the forefront of inclusion and forward thinking. This partnership is a giant step backwards for your wonderful company. Autism Speaks cannot represent my son's interests if they believe he should not even be allowed to exist and be included in society right now as he is. Autism Speaks challenges his foundational human right to exist; this is not inclusion or acceptance of developmental difference. This is an approach to advocacy that makes my son and his peers feel denigrated and ashamed each April. How can your company support propagating this?

Just the statement that your organization  "said it will use Sesame Street’s brand and characters to educate the public about autism and emphasize that kids on the spectrum are much like their typically developing peers" shows a basic lack of understanding that my son and many others like him are not like their typically developing peers. That is the point. That is what needs acceptance from society and representation in society in general and Autism Speaks in particular. My son is not like his"typical" peers. Sometimes people are never "like their typical peers".  I thought that Sesame Workshop, of all organizations would understand that and not work with organizations that insist that those they claim to represent are defective if they are not able to mask their differences. To Autism Speaks, his degree of disability is not acceptable.  I am so beyond disappointed in this turn of events.

I carry the label Black of hispanic origin. I know Sesame Workshop would never promote or support any organization that presented this combination of my racial and ethnic background as something to be feared, repressed, or made to conform to a standard that obliterates my personhood. So why is this okay to do with my son? He cannot conform. He is too divergent. Is he therefore to be erased in society? Should he be made to feel diseased? Please do not be complicit in this.

Sesame Workshop prides itself on its "long history of addressing diversity, acceptance and inclusion". Did you not wonder why autistic activists, other autism organizations and parents weren't included in these negotiations? I hope you will reconsider this partnership. If this announcement had been made after negotiations with a partnership of all autism organizations at least it would have  included representation from my son's real peers, autistic adults who like him, cannot hide their differences, any more than I can hide my racial and ethnic origin.  

Please reconsider this decision. I doubt you'll ever see this letter, but I had to try to reach out for my son's sake before writing Sesame Workshop off as a organization far removed from its founder's original intentions. 

You see, I love my son very much. I'm proud of him. He can't hide who he is. And frankly he shouldn't have to.

Sincerely,

Mrs. Kerima Cevik
Former Sesame Workshop supporter and consumer

Monday, March 31, 2014

Autism, Competence, Adding Kemal to Mustafa

A very long time ago, a mathematics teacher, Captain Üsküplü Mustafa Efendi gave his best pupil, and boy named Mustafa, the additional name Kemal, a name with a depth of meaning that I will simplify and say means maturity. This Mustafa went on to be given the name Ataturk, meaning "father of the Turks".  When our son was born, we named him Mustafa. We did not know then he was neurodivergent. We felt, if he could carry the name well, and became the young man we hoped he would be, we would add the name Kemal. Because maturity is not born. It is earned.

I have said before that my son Mustafa is a heroic figure. Born in a day and age when having a name like Mustafa makes you the target of instant emnity, he orchestrates his life in rich, ripe, silences, punctuated by occasional gifts of a word, sprinkled like salt and pepper over good soup. His hands flap as he conducts the symphony of the day that he has selected on his computer and he stands to do so. He is free to be himself at home, and because he is imposed upon so much outside our home, certain spaces, like his bedroom are his to control except of course for cleaning them, which is a joint effort. 

The most heroic scenes in Mustafa's life do not take place in public. They aren't filmed and uploaded for viral video potential. No, those episodes happen quietly, at unexpected moments. This is the month when you'll hear the worst things about my son and his peers. He is after all the most apparently autistic young man. He cannot hide his neurology. So I wanted to share one of those moments because something good needs to be said about my boy right now before the landslide of negativity and fear buries us.

I have been ill, and combined with fatigue, it has made it rough to go through my scheduled days with Mustafa. He senses this and has begun doing small things to compensate for the slowness in my movements and the times when I must sit and wait. I had reached a moment when pain shot through me and I sat down with the shock of it. Then Mustafa did something surprising. He sat next to me a put his arm around my shoulders. He sat with me until the pain passed. He pushed me sideways indicating I should lay down. When his father, concerned at the sudden quiet found us Mustafa had covered me with a blanket, returned to his room, and was sitting back down at his computer, continuing to go about his business as if I was with him. He would occasionally stand by my bedroom door, checking on me.  He did not request any assistance from his father. It stunned me. His father assumed I had wrapped myself in the blankets and fallen asleep. I had not. Mustafa simply did for me what I do for him. He realized I needed to rest.  He took care of his mother.

In his life, with its professional presumption of incompetence, these moments are heroic because they fly in the face of assessments that insist data driven observation knows who he is and what he is capable of feeling and doing. His range of knowledge, capacity for empathy, or what he might do if allowed to make his own decisions to the degree he can are all glimmering in these moments of greatness.  Mustafa is eleven. What he did for me is beyond the scope of what many eleven year old boys today would stop to assess and do. 

A few years ago I spoke to my husband about the idea that should Mustafa master communication we might add the name Kemal to his name. I don't think we need to do that now. He has matured without the name. Mustafa kemale ermek yolunda. Meaning Mustafa is on the road to maturity.  Happy Autism Acceptance Month my son.  Thank you for taking care of me.

Love,
Mom


Sunday, March 23, 2014

Surviving "Sounding The Alarm" of Blue Fear - I Won't Be Lighting Anything Blue April 2nd

It is a bit ironic that having been born into a Catholic culture, one of my favorite litanies is one created for a fictional religious order. It is the Bene Gesserit Litany Against Fear, and goes as follows:

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.

I will face my fear.
I will permit it to pass over me and through me.

And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.

Only I will remain.
from the novel Dune by Frank Herbert
Each year beginning the second of April, Autism Speaks rolls out the apocalyptic fear of epidemic pestilence circus. Everywhere my son goes, he will be hit with the news that he is the most unwanted person on the planet. He is a reason to to panic, to fill the coffers of Autism Speaks with funding to assist them in spending millions of dollars on ads, signage, slick lobbying campaigns all to silence any voice but that of their understanding of what they want. Because of course what I or any other autism parent wants, what my son or any autistic person wants doesn't matter. It only matters what mega charities who don't represent autistic people, and lately don't represent a growing number of families want. If you don't believe that the rate of autism is rising at such an alarming pace that if we don't eradicate it everyone in the world will be autistic, well then you are forcibly silenced.
Yes, my son and the majority of his peers will be donning their headphones against the noise, the flashing seizure inducing insulting spectacle that will drag on. All month people will be telling me that my son should not have been born. Because he doesn't use verbal speech, he is less than others. He needs to be dealt with. And they want everyone to know that. Well that is all a crock. We are not doing it.
Fear is the downfall of civilizations. It is the catalyst of ignorance. Fear driven campaigns serve no more purpose than fear driven research. We the parents and loved ones of autistic people, have tremendous power that we choose to passively give up to mega charities who claim to speak for us. They don't. What we should be doing is looking at what our people need. Where the millions of dollars in both federal funding and the funding well intentioned people will be raising in April should go. I for one would like to stop giving organizations the money to promote messages about autism that are harmful to my son and put him at risk for being harmed because he is different. "Sounding the Alarm" presents my son as having some variety of infectious disease and Autism Speaks has tried to make their voice crush mine by using a research psychologist and medical model verbiage.  If others can't accept that loved ones are different that is on them. Do they then have the right, by virtue of power and societal position, to dictate what happens to my son? No they do not. I am tired of my son having to go through this every April. He has enough challenges without the stress of Loud Blue Ableist April. 
Pity is almost as dangerous an emotion as fear. Pity distances people from its object. Pity dehumanizes. April Autism Awareness month as it is practiced now says "Pity my son and his peers." "Fear them." "Mourn the way they are"." Give up your right to advocate for your children". "Your children should not exist"." Why do we allow this to happen? Stop letting others tell you what autism month should mean. Cease allowing any mega organization to control the conversation about your loved ones. Don't let them treat your children like side show attractions at a circus. Teach them the difference between pity and compassion. Teach them the difference between fear and respect. 
What we need to do on April second is to take the money we would spend on blue light bulbs and give it to any local organization that has done anything directly to help your autistic loved one. Because when you buy anything blue next month part of that money is going to find its way to Autism Speaks. You will be giving Mrs. Wright and the tragedy wagon another year to peddle their alarm of doom and gloom to anyone who will give them funding in return. Well don't you want your loved one to have that funding? Then stop spending it on blue light bulbs! Stop dying your hair blue. Just. Stop.
What we will be doing on April 2nd is telling everyone we are not ashamed of our son. We loved him before he came into this world. He is a wanted child. We want him to succeed. He is in the fight of his life to be able to grow up and live as autonomously as possible. He deserves better than a month of mourning about the fact that he exists. I won't subject him to that shit. It isn't going to happen. 
I am a proud autism mom. Proud. If you love your children, then support the idea of an autism month that promotes respect for them, presents them as people with the right to live in society as everyone else does. Support funding going to research that is centered on them and creates a better quality of life for them. Look as organizations that directly help them and have people who are like your children in decision making positions. Because those people know what the future holds for your children when they grow up and they want your kids to have it better than they did. Respect that.
 Each time I hear Autism Speaks this song I used to hear on Hee Haw seems to be playing in the background. Here it is:
(video description: four white males in overalls and hats holding white jugs of moonshine singing "Gloom, despair, and agony on me, deep dark depression excessive misery, if it weren't for bad luck I'd have not luck at all, gloom despair and agony on me.. while a man wails in tune to the chorus)
It began and ended a comedy sketch. Autism month needs to rise above the melodramatic and tragic. So my idea is that you join me in doing your own thing this April. Start here:

s
take this and add your favorite family photos. Tell people what makes you happy about your autistic loved ones. Show them. Give hope and support to families not despair and imaginary scenarios of horror and doom. 

Much Love