Monday, November 16, 2015

Autism Answer: Facilitated Communication - A Brother and Sister Adventure

 give attention your way
i will do it mine
feed some souls with music
fastest way to fine
~Dar Shelton (2015)
It's been a while since I've shared with you one of my childhood cruelties. A thought or action I'm not proud of but where I was able to learn an important lesson. 

Let's fix that, shall we! 

My brother, Dar, started facilitated communication when he was about ten years old (or so). My mom was overjoyed to discover this method of chatting with my brother. She'd been insisting he had things to say for years, and she was certain he'd also been reading, so when this Ouija Board type talk was introduced to her, a way for my brother to point to letters on a board, spelling words, sentences, paragraphs, poems, my mom wasted no time learning and teaching all of us siblings. 

The thing is, I was a sibling who thought mom was almost as crazy as Dar. No way he had anything to say! No way he could spell! No way! And besides, the way to help him "speak" was to give him support, pull back a bit on his arm while he used that pressure to regulate his intention tremor and give him confidence as he pointed to letters. In other words, it looked like we were guiding his hand, like I liked to do with the Ouija Board. 

But some of the things Dar said were so different, so beautifully surreal, words that explained things in ways I'd never experienced, as if he were pulling them through another world and putting them together in ways we could almost understand, and certainly feel. 
deep in Dar's head is a contact c time capsule
it tick tick ticks and hurts his ears
especially when the world's asleep
those non-drowsy tiny time pills tick all night long 
~Dar Shelton (1993)
Unlike when I would push the planchette on the Ouija board, I was left honestly wondering and wanting to know more about the world he was composing for us. 

When we help our loved ones via facilitated communication, it's true that we will and do influence the message a bit, as is true with every other form of communication. But I think the most important thing is to keep in mind that facilitated communication is about believing our autistic friends and family member do have something to say, and we want to know what that is. 

When my brother began facilitating I didn't believe in it at all. He needed help, and to me he didn't seem like a person with things to say. I was young and cruel. I was overly influenced by the so many others who insisted it was impossible, he couldn't possibly have ideas and thoughts to share. He was a broken person who couldn't possibly learn to read or write. I believed them quietly while I let mom show me how to use the board with my brother. 

While mom taught me how to help him I struggled with my own issue. I liked being the helper, the one who could do things for mom, and I didn't want to look like someone who couldn't do this so, like with the Ouija planchette, I lead my brother's hand. 

Dar looked at me in a strange and uncommon way. I got my first inkling of how wrong I was and how right mom was. He was looking at me with so much hurt in his eyes, I knew that he knew I didn't believe in him.

But that didn't stop me right away. In front of people I would still lead him a bit - which meant he would reach toward letters on the board and if he took long I would decide for myself which letter I thought he was trying to reach for. However, when no one was looking I would try to do it honestly. 

There is a skill in giving him the support he needs without leading, and I eventually got it. 

So, yes, sometimes his words belonged almost entirely to me, but most often they were a mixture of us. Brother and sister. And then I learned how to let them be almost entirely his.

Facilitated communication is one of those things that has camps "for" and "against" which is something I'm pretty much against. Camps, that is. Though I understand why these camps have cropped up. People have been accused of horrendous things via facilitated communication. Sexual abuse, physical abuse, and more. If the accusations aren't true, if they are words coming from the helper "leading" I can see why this would be cause for concern. But false accusations is a thing that happens in the world and with all types of communication, and it's sad. It happens more in a world of talkers than non. And people who struggle to speak, or who can't speak at all, are enormously at risk of being abused. They are abused often and easily, and it's a terrible thing. 

However, I also agree with my mom who believes it's better to always encourage my brother to practice speech first, for obvious and even less obvious reasons. So I wouldn't pitch a tent in the "for" facilitated communication camp either, where I'd have to argue that it's necessary and best and has to be in all schools and, and, and.... 

Facilitated communication is a gift I wouldn't want taken from my brother. It's an imperfect tool that plays a perfect role in his challenging life. 

 put family under your pillow
~Dar Shelton (2014)
Today Dar still prefers a little help (my mom invented a brace to try and simulate the pressure he needs, he doesn't like it) but he can type independently. Well, someone still has to be there encouraging him and promising we want to know what he has to say. He shares insightful and cheeky posts on his Facebook profile. His intention tremor and poor fine motor skills often mean we step in and delete letters for him so he can start again. Without the pressure or support his fingers hit the wrong letters and words. It's extremely challenging for him. But he can now finally do it. 

Often, though, he'll ask mom to hold his elbow while he types. And she will.

For years and years and years my mom supported his arm, invented things, believed in him, taught us how to do the same, reminded him to try and try for independence without withholding support.

And the most exciting thing happened.
He sent me this in the mail. 
His first independent handwriting!
A letter I got in the mail.
So, regardless of how we choose to help our loved ones tell us what they have to say, I suggest we value and believe in their ability. I suggest we not judge others for how they help their friends and family share ideas. And I suggest we be willing to change our beliefs when it becomes clear that we were wrong. 

Like I was wrong. 

Now, I wonder if I should gather my children together tonight to play Ouija? And this time I won't influence the planchette.

Maybe I'll discover that I've been a believer all along,
I was just afraid of what I might learn when talking with the other side....  

Hugs, smiles, and love!!

Author's Invitation: I happily invite you to peek at this video of Man Alive, a documentary style show that featured our family back in 1994. You'll also have an opportunity to watch Dar facilitate and to hear the entirety of Dar's poem!