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Is your child difficult to motivate? Does your child have big emotions or difficulty communicating in the usual ways? I remember the long years when my Peter couldn’t talk, couldn’t hold a pencil, and didn’t want to play,  when his only sure motivator was food. To add to that, in his teen age years, as often happens, his emotions exploded with massive dysregulation due to OCD and anxiety. I used to think that the arts were only for other kids, less impacted with autism, or maybe savants. But I’m telling you, I was wrong. It turned out that the arts played and continue to play an important role in Peter’s development. The arts may actually be a part of the solution for your child as well.

How do you begin? How do you lay a foundation for creativity? I believe  that for our family, doing hours and hours of floortime laid the foundation. Now mind you, more often than not, Peter didn’t look like he enjoyed it; he looked like for all the world all he wanted to do was withdraw and be left alone. We doggedly proceeded as a matter of faith. During the long years Peter had almost no language, we did a lot of play centered around reenacting emotionally charged events that happened in Peter’s life with stuffed animals or an analogous theme, at first demonstrating a more adaptive reaction, then eventually as he got more and more into it, letting Peter create his own new endings. It wasn’t until years later that I asked Peter what he thought of those many hours of DIR, and he said he felt like “Cinderella at the ball.” (see Profectum.org for parent training resources, especially the new free “Parent Toolbox”)

Once Peter started using a Vantage, an icon- based augmentative communication device, we added the habit of journaling and reflecting. See this little icon?  I would carry it in my pocket. On walks or outings, I would pull it out, and ask Peter, “So what do you see? hear, touch, smell, taste? ” whatever made sense, depending on the experience.  Later in the day, I’d pull it out again or draw it in reflections, during bedtime prayers or in conversations with his dad, asking “so tell Dad what we did? or how did you feel about that?”, so he could enjoy the experience, savor it,  thoroughly all over again. We would reflect on negative experiences too to reprocess them. So Peter built his foundation of emotional self awareness, perspective-taking, and internal standards at the same time he built his language. In fact, I’d go so far as to say that he put in the hard work of learning language because it was so emotionally relevant to him to talk about both the bad and good times of his life.

If you want to see the steps laid out methodically for building this kind of foundation using floortime and reflections for a child with minimal language skills, they’re all in a book I wrote in 2012, entitled “Teaching Your Child with Love and Skill: a Guide for Parents and Other Educators of Children with Autism, including Moderate to Severe Autism,” published by JKP.

What has happened in the 5 years since then? I would say an explosion or revolution in development. What made that possible was Dr. Ricki, who introduced Peter and me to Darlene Hanson, a speech pathologist from REACH who introduced Peter to supported typing (http://www.reach.services). Supported typing is a topic for a future conference; for now let me just say it is a way to support the child in all areas, and as Peter recently put it, “Darlene snared my fleeting thoughts, enabling my thoughts to get out and stand on paper rather than scurry for cover.” Typing gave Peter the means to show what he knows, such that he was able to eventually transition to diploma tract. Even more importantly, typing allowed him to express himself and develop his creativity with the written word, with the efficiency, speed, and flexibility that icon-based AC could not provide.

His poetry today (see “My World as a Poemhttps://www.amazon.com/dp/1544634110/) is very much a development upon our old journaling habits- he writes about his daily experiences and inner life. It came providentially at the time his OCD and anxiety exploded, as often happens in the teen years. So Peter had an outlet for and a tool to handle his emotional dysregulation in writing. Creative writing has been critical for Peter to process and handle his big emotions, and conversely, because necessity is the mother of invention, the big emotions have been a  driving force behind the development of his creativity. The illustration shows how stress can trigger the amygdala (lower brain) to activate a fight or flight motor response, but the frontal lobes (upper brain) may learn, with nurturing and practice, to modulate that response, especially using creativity as a strategy.

 

 

 

 

Let me show you how this works in a real life example.

Two weeks ago, Peter developed a new OCD. He discovered an extra long rubberband, which he enjoyed stretching and plucking in the usual way. But then he started holding it between his teeth, letting the end dangle like a long string from his mouth. I didn’t want him to swallow it, nor look really odd to others. But first thing when he woke up in the morning, he started lunging for the drawer where he had placed the rubberband the night before.

I sat between Peter and the drawer.

“Peter, slow down! Is something driving you crazy?”

Peter tried to reach past me for the drawer, that crazy, driven OCD gleam in his eyes.

“Ok, calm down. Take a deep breath. That’s it. Come on, tell me what’s going on. How badly do you need to do this, on a scale of 1 to 5?”

Peter typed, “4+,” as he perseverated, “Rubber band! rubber band!”

“Remember Peter, if you feel that driven, this may be an OCD. If so, it’s probably telling you some false thought like, ‘If you don’t get that rubberband, you’ll explode.’ Right? Ok, how about we slow down a minute, and just talk about it first. So tell me, what’s so appealing about that rubberband? What would you do with it, if you could get to that drawer?” Peter started typing about all the great qualities of a rubberband. Always fun to think about a compulsion. After he got his thoughts down, I suggested we play around and divide the thoughts into short lines of verse. We picked out the most vivid vocabulary,   made lists of words that rhymed with them, then rewrote the corresponding lines to get the rhymes  in at the end. After one stanza, I asked another question,

“But what’s the down-side of holding that rubberband in your mouth?” We brought in a little perspective-taking and reasoning as Peter repeated the process of getting down his thoughts, then organized them into the structure of poetic form. At this point, he was already into the rhythm of the game, and willing to continue, thereby almost unconsciously beginning the process of resisting the OCD. By the time we finished the second stanza, Peter’s upper brain was now engaged, warmed up, and had come to the conclusion that cons outweighed the pros and that longing for the rubberband did not make sense and therefore must be a compulsion. So finally I asked, “So Peter, you have a choice. If this is really an OCD, what does Dr. Gwen say to do? That’s right, take a baby step away. What are your strategies? That’s it, put it away and distract, or if that’s too hard, turn the mad dog into a sled dog and use the compulsion as a reward. (We often picture OCD as a big dog companion that Peter has to learn to live with, so we use that image of harnessing the motivation of a compulsion to get work done a lot.) What do you think you can manage?”  We repeated the same process of writing, dividing thoughts into verse lines, creating rhyming lists, and editing.  Here’s Peter’s finished product:

Rubberband, rubberband, elastic and round,

Rubberband, rubberband, sing your song.

“Boing,” stretch, dangle, and pull,

I can’t seem to get enough “boing!” to the full.

 

But holding it between my teeth,

Is not a thing to really eat.

OCD, the very picture I look,

Dangling like a fish on the hook.

 

So instead of keeping you in my head,

I’ll use you to get out of bed.

Mom, put it in my bathroom cup.

I’ll chase it there, and thus get up.

“So, Peter, did you enjoy writing your poem?”  I could see it in his face, the relaxation of the muscles, the crazy, driven gleam diminished from his eyes.

“Yes,” he typed.

“How did your stress level fare?” We use an emotional thermometer, scaled 0-5.

“From 4+ to 3+.”

“So how powerful is your creative power?”

“Very.”

There’s an addendum to this story. Once Peter put his plan into action, and got out of bed, I lined up his soap, toothbrush, and mouthwash in a row, putting the cup with the rubberband in it at the very end, so he had to go through the sequence of his self-help tasks first to get it. By that time, so much time had passed, that he was at a different place in the compulsion wave. It was passing, not totally, but he was at a better point. So it was time for another negotiation.

“Peter, how long do you think you should get the rubberband? You don’t want to lose all the ground you’ve gained, so it probably shouldn’t be too long.”

“Ten minutes,” he replied.

“That seems a bit long to me. How about you keep it as long as you don’t put it in your mouth. If you do, I take it away.”

Peter thought a moment, then abruptly took the rubber band out of the cup and placed it back in his drawer and walked away to the kitchen for breakfast.

So rather than lose control of the rubberband, he decided to hide the visual trigger and not engage in the compulsion at all. It was the best possible outcome. Peter’s choice, to carry out his own initiative, a strategy he came up with himself, that did not carry out the compulsion and therefore not reinforce it or strengthen that OCD circuit in any way, all while exercising his frontal lobes and strengthening his brain connections top to bottom (point to first stanza, slowing down the reactivity), left to right (bringing in reason), so executive function could come online (point to third stanza). You could just watch those synapses grow, and watch the development of emotional regulation.

So my question to you is, could there possibly be anything more therapeutic than the arts? With the arts, the child has a positive means to channel and let go of all the anguish inside, to fully express, understand, and process his emotions, positive and negative. Those brain glitches may be companions our children have to live with the rest of their lives; how much healthier it would be to learn to accept, channel, and transform negative emotion, rather than simply try to squelch it all the time. This is by cartoonist Matthew Inman. Peter and I love this image, which has become our modus operandi for dealing with emotional dysregulation.

dong-combat-your-monsters.jpg
M. Inman

 

 

 

That’s one of the most important lessons Peter and I learned from DIR. Negative emotions are not all bad. We can learn not to be afraid of nor to  make an enemy of those big emotions. They can serve as powerful motivators for development.

 

 

 

 

I encourage all of you to explore the arts as the integrating and transforming channel that may turn emotional challenges into the development of emotional regulation, creativity, self-awareness, and self-esteem. And to make something potentially beautiful and enlightening for others in the process. With art, you can be yourself, at your own pace, and there are no restrictions or disabilities in the imagination. It can’t get much better than that.

Don’t take my word for it. Peter wrote this poem, revealing how the arts have transformed his life. (The poem is symmetrical, with the last four stanzas corresponding to the first four in reverse order.)

I am autistic,
Greedy eyes and ears,
Wet in the rain of sensory deluge.

I’ve been a prisoner,
Captured in silence,
Voiceless and unintelligible.

I’ve been a slave,
Strapped to my obsessions
Ordering me to do nonsense, perverse to my character.

I’ve been a paralytic,
Feet stuck to the street,
People swirling around me.

I’m a listener,
Watching and receiving
Like a peaceful tree. 

I’m a tiger tamer,
Harnessing  the energy of my compulsions
To write one more line.

I’m an escapee,
Flying my soul like a kite
On a string of words.

I’m a poet,
Exploring the world with keen senses,
Sharing with you a bite of fresh air.

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I am overwhelmed with joy today.

Dr. Ricki Robinson had invited me to follow her at her office, where I met a remarkable 19 yo young man with autism and his mother and witnessed them doing facilitated communication together.  All the mother did was lift up her son’s elbow slightly after each word he typed to “reset” his brain as a prompt to type the next letter.  I was so amazed at the beautiful things he wrote, as his behavior was so incongruent.  He came in and sat on the floor to finger some Lion King action figures.  He could scarcely utter anything intelligible.  But he explained through typing that he loves those action figures because they remind him of his childhood.

So I asked Ricki who had been teaching facilitated communication for this family, and she referred me to Darlene Hanson.

Well, I finally got my appointment today with Darlene.

She started out giving Peter a keyboard on her iPad and asked him to tell her the state he lived in.  Just by gently applying some resistance after each stroke to bring his hand back into neutral striking position, he typed out “California,” with two type errors that she immediately told him to fix (he then hit “delete” and made the corrections without further prompting).  I was stunned.  Next she asked a more ridiculous question.  “What state is Las Vegas in?” “Nevada” he typed without a hitch. We had just been reading a book about snails, and she asked what other animal has a shell.  He typed “turtle,” with one prompt for the first letter.  Then she tried a more advanced close-ended question.  “What political party does President Obama belong to?” she asked.  “Democrat,” typed Peter.  We would have never guessed he knew his geography about California and Nevada, let alone politics (we have talked about all these things, but never addressed Peter directly about them except that our state name is California- even then we only introduced him to CA for California, not the entire word).

Then I got to try.  I had him do a straight dictation and type “paper” which he did with one type error.  I did not need to guide his hand at all, only grasp his right forearm (the side he types with) and pull back and up slightly after he struck each letter.  Then I asked something harder, “What animal has a shell and swims?”  He immediately typed “turtle” with one type error.

After that, Darlene took a turn again.  This time she only applied a bit of resistance and upward motion on his proximal arm.  She asked, “How did Mom do?”  Peter typed, “It was good,” a full sentence.

Next Papa tried.  He asked, “Where do you want to go when we have a carride?”  Peter typed, “Carride.”  “But where, Peter?”  asked Papa.  “Gymnastics,” said Peter verbally.  Darlene asked Peter, “Where do you go to gymnastics?”  Peter needed help with the first letter, but then typed, “Championship gymnastics.”  I didn’t even know he knew the name of the gym, and he did make several type errors, but it was still impressive.

Darlene asked Peter, “How did Papa do?”  Peter typed, “Very good.”  I thought I’d challenge Peter and switched the iPad keyboard for his Vantage.  “You know how to say that on the Vantage too, Peter; would you type it please?”  Peter put his head down on the table and wouldn’t budge.  (He knows how to navigate it via icons.)

Darlene gently replaced the Vantage with the iPad keyboard.  “How do you feel about the Vantage, Peter?” she asked.  Peter typed, “Icons have no purpose.”

At that point, Papa fell off of his chair, and Belinda and I looked at each other in utter amazement.

I didn’t even know Peter knew the words “icon” or “purpose,” let alone that Peter could answer an open ended question like that in such a scientific and concise way.  I guess he really didn’t need the icons- he apparently can spell!

I was mystified.  “But Darlene, I protested, we’ve put a keyboard In front of Peter millions of times, and he needs lots of prompting to even spell simple snack items he loves and wants to request.  I didn’t think he had a good visual memory for spelling.”

“He just needed that physical touch to reset him and the rhythm.  It’s a dance you do with him to get his motor system going to translate what’s already in his head into typing on the paper.  This doesn’t work for everyone like this.  But you guys have input lots of functional language through using the Vantage and other methods through the years, so all that is already imprinted on his brain.  This is rate limited step here, getting the brain reset automatically to strike the next key.  Our goal is to fade this physical prompt, but for now it supplies the need.”

We all felt so humbled and so grateful.  How intricate and mysterious is the brain such that one small glitch presumably in the basal ganglia could so lock in a child for all these years?  But thanks be to God that we did not assume an insurmountable cognitive deficit, but kept slogging away, reading him all kinds of books (I’ll have to go up considerably from those lst grade readers) and hammering in nouns, verbs, adjectives, and prepositions with that Vantage.  And thank goodness for open minded parents and therapists who are willing to try whatever works for their child, and have therefore made this method facilitatedcommunication_1available for our child.  Peter can physically navigate his Vantage without anyone holding his arm.  Who would have guessed that typing would be so different for him?

All I can say, is listen to the experience of others, and go ahead and try their creative ideas, even if they don’t make sense with what you know.

Because none of us knows very much.

 

Is this a dream?  I’ll try it again tomorrow and let you know if I wake up.

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Laurie LeComer takes task analyses to a whole new level in her terrific book, “The Socially Included Child,”  published by Berkeley Books, 2009.  She describes a strategy to help your child with autism enjoy social events such as playdates and birthday parties.  First you introduce the activity by previewing what is going to happen with your child.  For example, you might give your child a little tour of his new school before it starts.  You might read a book about visiting the dentist ahead of time, or make a social story about a playdate before he goes to his friend’s house for the first time. Next you detail exactly what you expect your child to do.  For example, before a birthday party you might list expected steps for your child such as saying hello to the birthday child and his mother, handing the present to the child, jumping in the bouncehouse with the other children, coming to sing “Happy Birthday” when called, eating cake and ice cream, etc.   Next you evaluate your expectations, and decide which goal(s) you want to concentrate on.  For example, do you want to expend your energy assisting your child with interacting with the other children in the bouncehouse, or work on eye contact in greeting his hosts?  Next you get your accomodations ready such as putting the noise cancellation earphones, gameboy, or gluten free dessert alternative in his backpack (some of these are my examples).  Last you list all these components so you and your child can remember them and refer to them in a visual aide, such as a visual schedule with or without a reinforcement schedule.  By thinking and planning ahead, you can help your child navigate the social world more enjoyably, and learn more from each experience.

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Two of my favorite books for interactive game ideas are by Fern Sussman. More Than Words is  published by the Hanen Centre, Toronto, Ontario, 1999.  It’s sequel is Talkability, published in 2006 by the same Hanen Centre.  The game “Follow my eyes to the prize” is detailed in “Talkability” on page 32, adapted from the original game by Steven Gutstein.  His book of interactive games is called Relationship Development with Young Children, published in 2002 by Athenaeum Press.  These three books are outstanding resources, full of ideas of games and activities you can use to enhance your child’s interactive skills and social development.  Both authors organize their suggested activities by developmental stage so you can easily find games that match your child’s level.

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