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

The Great Shain Neumeier, Esq.

Remember the Autism Wars post Mother's Day? I mentioned people who everyone should know. One of them is Shain Neumeier, an eloquent attorney, writer, and speaker on topics of autism and social justice. Shain is one of my personal heros. So here's a brief introduction to Shain, with the hope that more people will get to know more about this outstanding attorney and champion of social justice.

Shain Neumeier giving a presentation on restraint, seclusion
and aversives in schools and programs for Education Law.
Rocking the T-shirt version of the white polo shirt worn by my son,
and designed by autistic disability rights activist Lydia Brown. 

Shain Neumeier is a disabled attorney living in Portland, Oregon. Shain has researched issues involving institutional abuse of youth and disabled people for a number of years and currently works with the law firm of O'Donnell, Clark & Crew in seeking damages from a notorious "emotional growth" boarding school for decades of abuse. Both as part of a research assistant position and out of interest, Shain attended last year's trial over the Judge Rotenberg Center's abuse of Andre McCollins.

During the trial, the Judge Rotenberg Center and its representatives, faced with having to explain video evidence of their abuse to a jury and to the public at large, attempted to paint Andre McCollins both as irrationally and almost untreatably dangerous and as able to work with and learn from a program that punished him for doing so much as tensing in fear. On the other hand, Andre's mother Cheryl and her lawyer Benjamin Novotny presented a compelling case that showed this "treatment" to be as senseless and cruel as the video footage would suggest. The outcome of the trial and its media coverage went beyond the undisclosed settlement between the parties, leading thousands worldwide who viewed what happened to Andre to demand an end to the torture. That end, with continued efforts, may well soon be achieved.

Shain's seven part series on the Andre McCollins trial was published on the Autistic Self Advocacy Network's site and can be read here.

This is the second segment in a series on people who need to be recognized for the work they continue to do for the betterment of the autism community.








.

White Polo Shirts, Autistic Eyes

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

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

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

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

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

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