Tag Archives: Kerima Cevik

The Only Things I’m Positive About #AutismPositivity2015

By Kerima Çevik

#AutismPositivity2015My husband and I took a moment to watch our son asleep this morning. He was wrapped in a tangle of sheets, unwilling to release his firm grip on a tiny piece of plastic that looked to be a lego piece. His handsome face was peacefully inhaling and exhaling deeply and not quite snoring. His arm was up in a position that made it clear he did not so much drift off to sleep; rather, his body won the battle to rest and recuperate against his iron will to keep moving. Ever darkening peach fuzz above his lip does not detract from the innocence of our son’s face in sleep. These are the moments when I catch my breath and wonder how I was part of producing such a lovely human being. I have a difficult time understanding how people fail to see him as we do.

What a hellish year its been so far. So much we are trying to shield him from, so much hate, harm and pain. Surrounded by all the danger and uncertainty I was so sure our nation would outgrow, I can say the only things I feel positive about are that we love him, that autism is not an anthropomorphic demon “with” him, dogging his steps, waiting to trip him up, and that this will of iron he has had since infancy is actually becoming steel, forged in the  fire of these horrific adversities life keeps throwing in our paths. I’m positive I belong beside him, guarding his flank against the racist, ableist, ignorant, hateful and well intentioned enemies that stand between him and his rightful place in this world. I am positive he is not a burden. I am positive of his right to be part of any community he lives in.

Mustafa Bey

One of my favorite pictures of him reminds me he is growing up. People say he looks much older than 12. My giant younger brother was about this size at 12. Mu holds a resemblance to his paternal grandfather, a man who was tall and commanding, a maritime engineer. All those things about him
that intimidate the uneducated have never bothered me. I’m not sure why that is. I call him my Pan-Turkish American Pehlivan. I sing songs to him about John Henry and Kiziroğlu Mustafa Bey and tell him that those who were like him never gave up; they commanded respect and he should do the same. My concern continues to be that he should be allowed to participate in life as anyone would. Autism shouldn’t be something he’s “with”, like a vaudeville ventriloquist’s dummy in a suitcase that is carried with him, attached to an arm. Our son’s neurology is  a descriptor of who he is like any other adjective we use to try and define him.

He is American/Nonspeaking/Turkish/Hispanic/Black/Indigenous/Autistic/Obstinate/Charming. He is all that and yet more than the sum of all. He defies description.  He reflects and refracts each aspect of himself. That is who his is. Sometimes I see him pounding down the stairs they said he’d never climb without support or laughing, jumping wildly in the sunlight and laugh with the sheer joy he taught me to express fully.  I pity those who don’t see him as I do. Perhaps it is the same as gazing too long at the sun. Maybe they should learn to not look directly at him just as he, in deference to not seeing their souls’ secrets bared, does not look into their eyes. Realities can be overwhelming.

The hardest thing about being Mustafa’s mother is people around me projecting their own ableism on me and telling me how I should feel about him. I shouldn’t be happy because they wouldn’t be. I must accept that he is an unacceptably divergent son, because they cannot accept him. I must be near some breaking point because were they in my position they would be. They have no idea. They just assume they do. Their forcibly imposed conclusions are the most difficult thing to fight each day. The time consumed countering all that insistent negativity about nonspeaking autism could be better used just getting to know my budding teenaged son.

When a word or short sentence bubbles its way to his lips it is a sweet jewel because verbal speech is nearly impossible for him. I know. I’ve seen the scans of his brain. His voice, a deeper richer combination of a voice I inherited from my mother and her ancestors, the voice our daughter has in a slightly higher pitch, is heartbreakingly beautiful. If Mustafa ever sings it will be something to hear. But that doesn’t matter to me now. I just want him to be given the respect he deserves. He has inherited something I did not wish to give my children; I don’t mean an autism gene. I mean a legacy of being a marginalized human being in a negative world. Acceptance? Acceptance is not enough.

I am opening the eyes of my heart and telling the world, here is my beautiful neurodivergent son, my most precious gift to you.  You cannot simply accept him. Respect him. Allow him to be an equal member of society. Cease killing his peers and silencing them. As for loving him?

We have all love he needs.

Original Post: http://theautismwars.blogspot.ca/2015/05/the-only-things-im-positive-about.html

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Filed under Acceptance Love and Self-care, Autism Positivity 2015, Autism Positivity Flash Blog, Flash Blog Posts

Expressing PosAutivity in A Negative World #AutismPositivity2014

By Kerima Cevik

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.”

 

Original post at: http://theautismwars.blogspot.ca/2014/04/expressing-posautivity-in-negative-world.html

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Filed under Autism Positivity 2014, Autism Positivity Flash Blog, Expressions of PosAutivity, Flash Blog Posts