Tuesday, November 24, 2015

Autism Answer: "I Am Thankful for Uncle Dar."

Declyn and Dramma (his grandma)

"I am thankful for my uncle (Dar) because without him my grandma wouldn't have started her business that helps thousands of families with autism in the world."~Declyn Shelton

When my youngest son, Declyn, was about five months old he would twist his body in crazy positions to avoid eye contact and certain types of touch.

As he grew he would throw-up daily, hold me tight for at least an hour at the playground working up the courage to play where strangers played (even though his brothers invited and invited), he had a need to wrap his fingers in my hair that kept him forever in my arms. He and his other sensory and socially challenged brother became intense friends, with a closeness that made them seem like twins. 

This never frightened or worried me. I have grown up surrounded and gifted by autism. I have family members with similar sensory, social, and communication challenges. Because my mom has not only helped my brothers in these areas but also hundreds of others around the world, my son and I were in good hands. It was a simple question of enjoying the work. Which I strongly believe meant helping my son with his challenges while asking the world to be more open to diversity. It's not his job to be like us, it's our job to shift ourselves and learn to like all of us.

As a family we encouraged eye contact, discovered ways to help him keep his food down (mostly!), visited playgrounds intentionally over and over--not pushing him to become socially comfortable but believing he could and celebrating each step of the way--until he became Mr. Popularity. His need for wrapping fingers in my ponytail had lessened; became mostly a bedtime thing with the odd stressful-day type need thrown in for good measure.

Declyn is now involved in Marching Band, he's doing a trumpet solo for the regional competition, he's on the debate team, he's rarely home and consistently surrounded by people which he's quite comfortable with. Safe in the knowledge that when he comes home we'll allow him time alone and personal space. And I'll let him play with my hair when he needs it.

Declyn is fifteen. He is my youngest. My baby. I kind of want him to stay little and I even catch myself getting my hair wet for him (he loves it when my hair is wet) just in case he wants to still need me. Usually, he's busy.

I'm so proud of all four of my boys, who have helped each other, hurt each other, compared themselves to each other, pushed away, pulled close, but have always, always loved each other.

I'm thankful for my entire family.

I find it simple and natural to feel and express gratitude often, and with volume. My sons do the same, mostly when talking about each other or me.

One day while I was cleaning our house (okay, fine, trying to find something under all of the mess. tee hee!) I found a piece of schoolwork Declyn had done way back in his younger years, when he was still struggling pretty strongly with sensory issues and social challenges. 

"I am thankful for my uncle (Dar) because without him my grandma wouldn't have started her business that helps thousands of families with autism in the world."~Declyn Shelton

That heaping helping of gratitude and gratefulness is a delicious addition to the Thanksgiving season!

Hugs, smiles, and love!!
Autism Answers with Tsara Shelton (Facebook)
www.brainbody.net <--- Check out the business he's talking about.

My boys having burgers with Uncle Dar

Friday, November 20, 2015

Autism Answer: The Value Of Less Words


His deep brown eyes pleaded with me to take away the anguish while his newly accepted maturity knew that I could not. 

But we both also knew, my youngest brother and I, that—as always—I would try. 

His anguish was manufactured by his perseveration of the moment (having to do with the shape of cars in the future) and a strong frightening certainty that things would not go his way. 

I took a breath and distilled the words that usually helped him. Tossing away any unnecessary fluff or digressions I attempted to gift him with a soundbite he could hold onto and clearly remember. 

“The Universe doesn’t speak English or French, Rye, it speaks the language of mood. The more joy and faith and love you speak to it and envision for it, the more it will return that same communication.” 

I put the dish I was washing in the dish strainer, rubbed my wet hands on a nearby towel, and returned my brother’s gaze. I spoke to him for a moment clearly in the language of mood, sending understanding and supportive energy his way and felt a surge of appreciation returned. I was encouraged then to add more words. 

“Right now you’re speaking fear to the universe. You saw a car shaped the way you don’t want them shaped and rather than laugh, believing in a playful Universe that teases, you chose to fear a Universe that refuses to care about you. You thought words like I don’t want that shape but the Universe speaks mood, not words, and is giving you what it thinks you want based on where you put your energy.”

My twenty-eight year old baby brother relaxed then, and sat comfortably in a chair in my kitchen, looking at me expectantly. He wanted more words.

“The Universe is kind. It listens. So use the language of mood to tell it what you want.” 

My brother smiled then and we started making up scenes and situations where he could choose to feel afraid or instead choose to feel encouraged. Admittedly, we got pretty silly! Because by then we were speaking the mood of comfortable sibling silliness. 

This wasn’t the first time I had helped my brother by sharing this idea with him, but it was the first time I was able to bring it down to a smaller number of words; the necessary ones. 

Ever since that day I’ve been able to remind him of the entire conversation and concept by simply saying: Use the language of mood. 

Words are powerful. Communication is even more so. Often the clearest and most honest way to communicate is by using less words. 

I’m in a unique position to know this. As a writer I spend a delightful amount of time tweaking my meaning by weeding out words. A practice I first learned to value while growing up surrounded by autism and siblings with immense challenges in communication. 

I am the oldest daughter of eight now grown children. My mom always planned on being the fabulous mother of at least a dozen kids and was heartbroken when she had to have a hysterectomy after my sister and I were born. However, after a brief dance with depression, mom started again speaking the language of mood purposefully; the Universe saved many lives by introducing mom to the world of adopting children with brain dysfunctions. As a child my mom had felt forever unwanted and misunderstood, and she was drawn to save my brothers from that same fate. 

Which she did!

My brothers were challenged in many ways. Among other things they all landed in various places on the autism spectrum, so they all had issues to some degree with communication. The most challenged were the youngest and the oldest of my brothers. 

My youngest brother, the one who sat with me in my kitchen contemplating the language of the Universe, was echolalic. Though he could say words he only copied what he heard others say, often creatively using the words and phrases of others to say new things. Things that would get him what he wanted in the moment. 

The oldest of my adopted brothers couldn’t speak almost at all. Though he tried and tried; getting a clear word or sentence out only about once every few months. 

I’ll admit I spent too many years assuming they had nothing to say. 

I know now that I was cruelly mistaken. When I began to put aside my assumptions (and the assumptions, sadly, that society encouraged in the language of mood) and really watch my mom with them, I saw true communication. Communication that was far more real than the gossip and lies and attempts to be cool that my friends and I were involved in. 

My mom and brothers spoke the language of the Universe. The language of caring, believing, letting go of judgement, loving, and action. 

They spoke the language of energy and mood. 

My brothers (and most autistic people) respond more quickly to energy and mood than words. This is true, I believe, for most of us. But we also lie with words more easily, pretending we’re not. We put our words out there to play the game of lies while we engage also in a battle of moods. 

Growing up with my brothers, while also always harboring a deep desire to become a writer, put me in a fantastic position to consider this conundrum. 

After all, as a writer words would be my only tool. Words and punctuation are how I would communicate my stories and ideas. What value could there be in seeing the lie words often represented?

And here is the gift. Words are not a lie. They are a powerful, meaningful, and impressive way to communicate; especially when we distill them down. When we recognize them as a direct line to our mood and truths. 

The joy of less words, then, becomes the joy of discovering our truth. 

I do this now as a writer. I delight in the tweaking of words, searching for exactly my meaning.

I do this also as a mom, friend, and sister. Although in spoken word I always first use far too many. That’s fun also!

My youngest brother and I had discussed the value of mood for almost a year before I really understood what I was trying to say, and before I really knew the best way for my brother to understand it. We had many chatting sessions where we overused words and followed where they lead. Too many words is often where I start. 

Luckily my life and my family have taught me the value of simplifying and seeking the truth amidst the mess. Whether I’m looking for the problem within the symptoms, or the person within the behaviors, or the truth amidst too many words. 

I try to always be intentional and careful, to speak the language of mood, and to honor the joy and value of less. 

Hugs, smiles, and love!!

My youngest brother

Tuesday, November 17, 2015

Autism Answer: Why It's Easy For Me To Open My Borders

Things People Told My Mom Before She Adopted My Siblings: 

"This one is blind and deaf. He can't control his bowels and doesn't sleep and your whole family will have to deal with it. He's feral and won't ever be able to learn. You'll be keeping him until a bed is available at the institution. Are you sure you want to do this?"

"He's dangerous. You'll have to teach the family to protect themselves and to hide their weaknesses. He's small but he's mean. Are you sure you want to do this?"

"She's been abused so much there's nothing good left in her. She lies and takes advantage of anyone and everyone, don't believe it when she says she loves you. It's not her fault but it's not your problem either, and you have other children to protect. Are you sure you want to do this?"

I could go on and on and on. These people were well meaning but terrifically misguided.

My mom -- Lynette Louise aka The Brain Broad--has always exampled love, hard work, strong expectations and raising the bar. But never has she taught us to permanently close our hearts or our door. 

And when mom did cave into the pressure and judgements of others for a short time, attempting to keep dangers at bay and to find folks focused on protecting us, when she doubted her instincts and thought perhaps others were right, in those few years we were hurt. We were left feeling lost and afraid, acutely aware of the monsters in our midst but unable to easily identify them, and we were taken dangerous and cruel advantage of. 

It is with the greatest of gratitude that I appreciate and love my mom for having the strength and vision to choose love and open borders again.

I am the oldest daughter of eight kids, six were adopted. My mom has continuously invited people to live with us for temporary stints (she has a filmmaker from Uganda staying with her right now). My life and the lives of my siblings have been forever and infinitely made better because of this. 

Yes, there have been mountain sized challenges and scary moments, we have had to say "no" with strong love and a belief in each other now and then. Mom has had to offer love and help to people in a dangerous frame of mind while being smart and careful about it, without inviting them to live with in our home, though she still helped. There have been confusing times of deep introspection where we had to keep careful watch on the balance between kindness and blindness; knowing that, always, kindness is possible.

So, yes, like with all lives there have been times of inconvenience. 

But there have been no regrets. 

Love, gratitude, laughter, tears, support, worry, adventure: yes. 

Regrets: no.

We are best and beautiful when we don't let our fears control us. 

Keeping our eyes open to the true nature of beings is brilliant, it helps us to stay safe while we remain willing and able to see the value within. 

It helps us stay safe while we open the borders of our hearts and open our doors.

Open hearts and open doors is a gift my mom is always strong and kind enough to offer. 

I try to follow in her footsteps.
I invite you to join me!

Hugs, smiles, and love!!
Autism Answers with Tsara Shelton (Facebook) 

Mostly my family, plus one more. Which, in truth, is fully my family!

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!