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

Autism, Competence, Adding Kemal to Mustafa

A very long time ago, a mathematics teacher, Captain Üsküplü Mustafa Efendi gave his best pupil, a 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 enmity, 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

Free Your MInd

Our children are growing up and growing old. As fun as it was to watch them as infants and sweet young children, we have to accept the fact that our children are maturing and will age. My son is on the brink of becoming a teen. What I have spent the past three years doing is asking myself what kind of quality of life and standard of living I want my son to have when he is grown up.

Part of the reason for my unusual point of view in this blog is an attitude driven by the idea that I want my son and everyone who is disabled to live as autonomously as possible. I want my son and all his peers to experience the best quality of life they can. I want my son and his peers to have the opportunities to succeed and excel in life without losing health benefits, food stamps, and other supports that sustain them. I want my son to be completely included in our community and respected in society as he is. I want my family to understand that my son's future should not be tied to anyone else's. The world should be such that he can live his life without feeling he needs me to be alive to live it with joy. No one, not even his mother, should make him feel dependent. He should feel empowered.

This attitude is why, when being asked something by Landon Bryce one day a long while ago,  I was unable to answer. It had to do with whether I considered myself an autism parent blogger. I really dislike the term "Autism Mommy Blogger". I didn't want to be called that. Because it is used in a derogatory way, to diminish the women blogging. The majority of these women are highly educated authors, journalists and career women who made life changing decisions to be there for their autistic children. Others are dedicated stay at home parents who are self taught advocates for their own kids. None deserve to be marginalized because thousands of other parents read what they write and hold it in higher regard than someone with a background in journalism or science who is not autistic, or has not parented an autistic child. But facing this question from Landon, I could not put this all into words. I could only say, that I did not want that label. I did not want my son to be diminished by my blogging about him. And not all mom bloggers understand that attitude or care. Some are destructive of their children in their blogging and I did not want to be part of that either.

So understand that blogging was something I started to help gain a voice for what I thought my son and his nonspeaking autistic peers deserved for their future as adults. I don't believe a goal of living above the poverty line is an unreasonable goal. I don't think living autonomously is an extreme goal for a nonspeaking autistic person either. In fact I know nonspeaking autistic adults who do live autonomously in their own homes. So the question was how could I write to explain this to other parents? How could I make them understand that the rhetoric they have been given all their lives, that they must somehow survive beyond all hope and be healthy because their lifework is now to be a caregiver for their nonspeaking autistic child for as long as that child is alive is a recipe for disaster? How do I make other mothers see that there is a better future for their children that does not necessarily include them? Because once the problem is defined properly, it can be solved. Autism parents are determined, tough, patient, and focused people. Imagine if all these characteristics were bent towards finding a solution to the problem of where their children could live out their lives autonomously and how to keep them living a good quality of life. I felt that if I could accomplish that change in thought process and attitude, all our children would be safer, happier, and included in their own lives. Parents would be relieved, less stressful about the future, happier now.

So far, I've failed to reach most adults. Perhaps that is because I am not writing about the tough day to day aspects of being an autism parent. Maybe because I am saying I love my son as he as and am proud of him. Or that I reject Autism Speaks, who does not seem to get the faintest idea of how to advocate for my son and his peers because it refuses to include autistic adults in the leadership of their organization, which professes to advocate and speak for them. I do not know, but I do know that I am not reaching the people who I wanted to try and tell that life does not have to be as others have said it will be for our children. I now wonder if I should simply cease trying.

I don't really know where to go from here.  Maybe I should spend some time telling you all what is already out there that can change your children's lives right now. Right now, as state and federal governments are cutting funding from developmental disabilities programs (click me), autistic adults are teaming up to live autonomously and support one another living as independently as possible. Parents of nonspeaking autistic children are having that conversation about coaching their children in day to day life skills now. All that is great. But there is something we can all do right now. We can fight to insure that by the time our children grow up, they are paid what any other worker is paid for equal work. We can fight to insure that all our nonspeaking autistic children are assessed and accommodated with AAC devices and that the law insures that their speech devices are never removed from their reach. We can form communities for autonomous living as parents and built our own cohorts of classmates, playmates or friends that can live together and share a home or large apartment and adapt the homes for them so they can live as autonomously as possible.

We have right now, so much technology that can make a nonspeaking autistic adult autonomous. We are just so focused on the tragedy model scenarios of us carrying our children on our backs for their entire lives that we are not demanding our schools prepare them for life on their own. Our children are ABA "therapy-ed" into learned helplessness. We are fed a litany of what our children cannot do to such an extent that we become helplessly trapped in a mentality that says our children will need us until they die.That mindset is a type of learned helplessness as well.

We now have driverless cars that use GPS and onboard computers to navigate traffic. We have robots that clean carpets, toilets that flush themselves, all in one machines that can wash, dry and even steam clean laundry. We have dials on showers that keep users from dispensing water hot enough to burn.  No autism parent is thinking about how these things can make their children's lives more autonomous. What is out there is literally thousands of autism blogs saying the same sad and tragic things. I don't want my blog to be one of the thousands abandoning hope and wallowing in despair.

How can we change things right now? How can we make a future for our children that no one believes is possible? First change our attitudes of what the future means for our children. Yes, our nonspeaking autistic children can live well without us. Yes they can. If we help them. Believe your child can leave home just like any other child. See yourself being proud of your grown child living autonomously. Then join me. I"m telling you what is out there for them will blow your minds.

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