Tag Archives: communication

Love is the Language and Making Connections #AutismPositivity2014

By Yuk-Lung Chan

‘Love is the language’ By Yuk-Lung Chan



Making Connections

‘Making Connections’ By Yuk-Lung Chan


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

Image of multicolored background with uplifted arms
and hands reaching upward  with the words
Autism Positivity 2014 Flash Blog written in black

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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Shaping Clay’s Expressions of PosAutivity: #AutismPositivity2014

By Michael Scott Monje Jr.

Reading Against the Grain

If there’s one thing, and only one thing, that I’m going to talk about with regard to autism and communication, it has to be the way that it changes the context of what I’m reading when I read literature. For me, almost every story I encounter is multicultural literature, since almost all of them have either been written by allistic people or for allistic audiences.
It might seem like this is a small thing, or overly obvious, but it’s not. Consider this: that every time you are about to read a story from 50 or 100 years ago, or from a region of the United States you’ve never lived in, you are actually reading about another culture, another people, and another set of social assumptions that you don’t really understand.
Most of us latch on to this and do the work of cultural translation when the break between ourselves and the characters we’re reading about is obvious, like when we read work that is translated from another language or by someone from a different racial or ethnic background. Sometimes, our teachers try to remind us that the social and cultural realities that books respond to are not the same as the ones we are experiencing, but more often than not, they do so in a way that still attempts to make the story’s message meaningful to our immediate circumstances.
That’s not how reading works for me. Unless I’m reading work by other Autistic people that is intended for an Autistic audience, I am constantly caught up in an attempt to understand the context of the intended reader’s experience. To me, as an outside observer, the enjoyment of the story is equal parts what is actually in the story and what the writer’s choices say about zir view of the “average” reader of zir time and place. Each book is an argument about what a writer thinks the commonly held beliefs of zir culture are and what that writer’s attitude toward said beliefs are.
I am never closer to another human being than I am to the writer of a book while I am reading it. If I were able to coast along on the assumptions about motivation and priority that govern most people’s approaches to storytelling, I would not find myself looking so deeply into each story. If I did not have to struggle to understand why characters would care what other characters think about them, then I would miss out on the varying levels of cultural conformity and the diverse ways that deviance has been policed across different societies.
If I thought like allistic people thought, I might have missed the fact that Dickens’ London is absolutely not the same place as Woolf’s London, and that the entire social ethic of the two writers’ times has changed to the point where the decadence that lies between them is not merely an artistic change, but an actual death and rebirth of a national identity.
I’m not saying that allistic people don’t do this. English departments exist in colleges because they do. What I’m saying is that they have to be specially trained to do it, and they usually only apply these skills and methods of thinking to literature. For me, these skills are a natural part of my communication process, because the act of close reading is the same as the act of translation across languages and cultural contexts. Since almost every conversation I have had in my entire life has involved this kind of translation, every communication I have is roughly following the same process I use for unpacking literature.
Because the way that I read and understand stories is tied in to the way that I navigate communication in everyday contexts, people think that I have a special insight into the things I read. This is often reinforced by the fact that I have so much to say about so many things when I read, even if I only read something once. What they miss, though, is that the effort I save by being able to close read something in a single pass is not really energy saved. It is counterbalanced by the fact that every communication I have with other people is just as taxing to me as doing full-on literary interpretation.
The result of this uneasy balance is a tendency to communicate in parables. It is much easier for me to tell a story and then to wait for someone to unpack its meaning than it is for me to have a straightforward discussion with someone. This is an extremely helpful thing to me when I am working, but it can be frustrating when I am dealing with people in a face-to-face setting. When I find those communication partners that can recognize it for what it is, though, then I have some of the most rewarding conversations I’ve ever had.
When I can’t communicate in stories, analogies, or parables, then finding words becomes much, much more difficult for me. Luckily, as I produce more and more creative work, there are less and less people demanding that I talk to them in their own ways. They are learning to switch into my vocabulary, to view my less direct communications for what they are.
My need to deeply interrogate everything I read has not always been met. There was a long time in my life when I struggled so much to grasp the basic point of character behavior that seemed utterly inane to me, and I was not mature enough to accept that behavior I did not understand could be motivated by honest and worthwhile thought. I was nearly thirty before I found the maturity to see that the world was not divided into cultural contexts that I could decode and banal ramblings by people with empty lives, but that it was instead simply full of cultural contexts that could be decoded if I had the right scaffolding.
Stories are the textbooks to our theory of mind. The important thing to remember is that not everyone will read a textbook and develop the same theory. If we did, then there would never be controversy and debate, and our discourse would be nonexistent.
Please remember this article the next time you hear someone call another person’s communication “nonsense”.

Original post at:http://www.mmonjejr.com/2014/04/shaping-clays-expressions-of.html

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