language

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Communication – The Detours Connecting One Universe to Another

Published April 29, 2017 by Jen Rosado from MyAlternateUniv

Nothing frustrates me or gives me more anxiety on a journey between point A and point B than having my forward momentum slowed or stopped by the noisy, confusing gridlock of traffic.

So crazy it makes me that I often take the next available exit and try to feel my way through back roads and byways, guided by road signs, GPS, and even old-fashioned paper maps. Despite the traffic lights and stop signs, the slower speed limit and occasional wrong turn, a detour can be far less stressful to me than remaining stuck, mindlessly inching along, bumper-to-bumper on the jam-packed highway.

Inevitably, I arrive at my destination much later than expected, but eventually I do get there.

I imagine for the average child, learning to speak is much like traveling on a highway on a “good traffic day”; some children ride in the fast lane, others in a slower lane, but they hit their milestones and arrive at functional speech within a statistically average amount of time.

That journey can be quite different for a child with autism.

My son has spent much of his journey stuck in traffic, his brain overloaded with information from his senses – a confusing, noisy gridlock of signals that are difficult to filter and process properly. And a mind constantly distracted by the need to lessen overwhelming sensory stimuli (and the accompanying intense anxiety it creates) is a mind unavailable for learning.

We spent years wondering when, or if, he would ever learn to speak. Anytime we heard of a case of an autistic child learning to speak attributed to some new approach, we felt a resurgence of hope. Here was a new direction to try, a new mountain to climb with a world of possibility waiting on the other side. Maybe this was the magic detour that would help my son find his way!

But autism presents uniquely to each individual, so it should come as no surprise that what works for one person might not work for another.

Looking back, we tried many different techniques and therapies – some more helpful than others, some not helpful at all, and some helpful but not necessarily effective if presented too early – like pointing out a detour far ahead when our boy still hadn’t even found an exit off the congested highway. For a long while, it seemed he didn’t even notice us waving and shouting, trying to get his attention from the side of the road. He just wasn’t available for learning in those earlier days.

This universe is composed of small victories, not magical, overnight successes. Here, movement takes the form of baby steps, uneven and unbalanced – three steps forward then two steps back, with the occasional fall on the bottom. “Miracle breakthroughs” are the result of hard work – inches of slow, almost imperceptible progress made over days and months and years that eventually add up to a milestone.

But I’ve learned that hard fought battles make those small victories feel like miracles.

A few months before his sixth birthday, we finally heard our son speak. His voice was the most beautiful sound – a delicate, musical whisper, perfect in its imperfectness.

You might remember that my son’s “first” first word at 12 months was “clock”. Well, my son’s “second” first word at five and a half years old was…

The alphabet.

Not all at once, mind you. He started (obviously) with A, then B, C, and D, and on from there. He loved the alphabet song and capital and lowercase letters and the way they lined up side by side in straight, neat rows to form words. (A boy after my own heart, I must say).

It was then that I truly began to appreciate the amazing complexity of human communication. “Speaking” doesn’t always mean “communicating”. The alphabet is not a word that conveys meaning. Yet while the sounds he was making did not express a thought or need, he was actually communicating – by looking to me for approval or celebrating his accomplishment with claps and cheers. So indeed, through the alphabet, my son was interacting with his world.

 

 

The fact that he had learned the alphabet song offered a clue to the inner workings of our boy’s brain. We discovered that my son learned best when words were taught through songs or paired with visuals or sign language. Music, movement, and pictures were signposts guiding his brain through detours, like a GPS “recalculating” the route to get around the traffic jam on his neural highway.

Words popped out intermittently in the months that followed. He said “cup”, “bowl”, “cookie”, and “baby”, all accompanied by their correct signs, apparently stored in his memory banks after years of watching sign language videos from “Signing Time” and “Baby Einstein” over and over.

To our confused delight, he loudly sang, “Ha-So-Me-A-Toe” for weeks before performing the correct movements to indicate it was his personal rendition of “Head, Shoulders, Knees, and Toes”.

Then a few months after his sixth birthday, my son said his first meaningful word – “more”. Not some boring, monosyllabic, 2 second “more”, mind you, but a long, drawn out, sing-songy, “auditioning for the musical Oliver Twist” sort of “more”.

He used it in the correct context as a request and accompanied it with the correct sign. It was an exciting breakthrough!

So that’s it, right? I mean, once he says a word and understands the concept that saying a word as a request causes the big people around him to give him things he wants, that should be the key, the light bulb, the lightning bolt. Like Helen Keller’s sudden understanding of the word “water” signed in her palm at the water pump, surely this was the moment of connection from which all other words would flow.

That’s of course the idea we always had – that once our son made the connection between words and the world around him, more words would quickly follow. “Almost overnight,” people would joke, “he will be speaking in sentences, and you’ll be wishing for a moment of peace and quiet!”

But autism and language and human behavior are mysterious and complex. It’s as if our boy had arrived at his language milestone after a long detour only to find himself surrounded by a thick fog. For my son, processing the signals from the outside world, and even from within his own body, is not an easy task. Making that connection and formulating some kind of response, whether verbally or with signs or picture cards, requires a great deal of focus and concentration. It does not come easily.

Naturally, motivation becomes a big factor, because if you work really hard at something it helps to know you will be getting something really great in return. Otherwise, you’ll find an easier way to get what you want that doesn’t require as much effort. And therapists through the years have discovered something that we, his parents, already knew to be true – our boy is not motivated by many things. Food items hold little incentive for him, and toys only motivate him in their novelty.

The truth is, offering incentives to move forward in a thick fog may get him moving again on the road to communication, but his progress will always be slow. Even now, a year and a half after that word “more”, he’s still inching his way carefully through this confusing territory.

So while we continue to cheer our son on as he makes his slow and steady journey on the road to communication, we also try to lift the fog a bit and make the going easier. His speech sessions are paired with OT or PT, music is incorporated into his lessons, and his therapists are trialing different communication devices and programs to find the perfect match for his learning style.

We need to meet him where he’s at, drive at his pace, and guide him the rest of the way.

After all, in teaching my son to communicate we’re not just hoping to hear his voice, we’re hoping to understand his wants and needs and interests, to get to know all there is to know about the wonderful little person he is by building roads and finding detours to connect his universe to ours.

 

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Beauty – How My Son Speaks Without Words

Published September 12, 2014 by Jen Rosado from MyAlternateUniv

“To see a world in a grain of sand,
And heaven in a wild flower.
Hold infinity in the palm of your hand,
And eternity in an hour.”
-William Blake

In our side yard, there is a giant maple tree. Two things make this tree special: 1. It has dark crimson leaves that stand out from the green of the surrounding trees. And 2. My boy loves this tree and thinks it is beautiful.

Truth be told, this tree isn’t in OUR side yard. It’s actually in the neighbor’s yard, but its lower branches reach out over the fence into our yard. And, truth be told, I really have no idea if my boy loves this tree or thinks it is beautiful.

My son has autism and is non-verbal. He cannot express himself through words or language at this point, and it was only a little before his fifth birthday that he showed signs of understanding what others were saying to him. Something as simple as following a request to “pick up the ball” or answering “yes” or “no” to a question are skills he has not mastered yet.

To know that my son loves the crimson maple tree in the neighbor’s yard, I need to interpret the clues he gives me…like the fact that he sometimes stops running and stands staring at the tree as its branches sway in the wind…or the way he sprints through the yard with his head tilted up towards it shouting, “I-yeee!” with a huge smile on his face…and how upset he got when he found one of its leaves on the ground and handed it to me, indicating that he wanted me to put it back on the branch from which it had fallen.

Yup, I’m pretty sure he loves that tree.

One wish I have always had is for the ability to climb inside his head – to see what he’s thinking and understand how he sees the world. Ever since he was first able to pick up and observe objects, sprinkle sand, and pour water, my son has, at times, become fixated in these activities, performing them over and over. I find myself wondering what he sees, what he’s thinking.

Why does he bring toys close to his face, moving them from the middle to the very periphery of his vision field?
What does he see when he scoops a handful of sand, lifts it to his eyes, and allows it to slowly trickle back into the sandbox?
What observations does he make as he watches a handful of pebbles bounce off the plastic table, the rubber ball, the metal railing?
What questions fill his mind as he drives himself crazy trying to catch a drop of water between his thumb and forefinger has it falls from the end of the hose?

Without language, without the ability to communicate, the workings of his mind remain inaccessible to me.

I’ve been told that he focuses on tiny grains of sand, water drops, toys, and other small objects to block out a world that is overwhelming to his senses. I have no doubt that this is true. But autistic people who have found language, like Temple Grandin and Naoki Higashida, lead me to believe there might be more to it.

Maybe it’s not just blocking out the world, maybe it’s also appreciating the world in its most minute detail.

Children his age are usually full of imagination and questions. I would think he is just as creative and curious, but without language he must make sense of his world through observation alone. His brain must find a different way to think thoughts, organize them, and learn from them. I’m guessing his imagination and the stories he invents must be quite unique, indeed!

At a recent play date, I watched three children the same age as my son running from the sandbox to the porch where they sat with their feet dangling from the edge as they sprinkled handfuls of sand onto the cement sidewalk below. Chatting happily with each other, they repeated this over and over, until I finally asked what they were doing. “Feeding the sharks!” they said.

Huh! Well, of course! The clues were there, weren’t they? After all, the route they took from the sandbox to the porch always avoided the cement walkway. And they were being very careful not to dangle their feet too close (although apparently the sharks were of a friendly variety). And how else would you feed sharks but to sprinkle food from above?

See, a child’s mind works differently from an adult’s mind…an autistic child’s mind, even more so. I was able to put the clues to the shark story together only after they had explained with words what they were imagining. With my son, however, there are no words for him to explain his thoughts. And the clues he gives to the inner workings of his mind can be as frustratingly elusive as that water drop that he just can’t capture.

But sometimes, when I’m really lucky, I feel like clues ARE there.

Like when my boy scooped up a handful of sand and ran across the yard, opening his hand and releasing a sand trail into the air as he went, I saw the joy on his face and tried to imagine what he was seeing. Perhaps he imagined something far more beautiful than just sand. Maybe to him it glittered and sparkled as it fell back to the ground, a tail for my little “comet boy” as he flew toward the sun.

I’m a writer, a lover of words and language. But I’m learning that thoughts can be conveyed in much simpler and subtler ways. It’s a form of communication that requires me to pay close attention, to act as an interpreter, to give words and meaning to the clues my son is sharing from his inner world.

On a sunny afternoon not too long ago, my son ran around the corner of the house and came to a stop. He was staring at his tree. I walked up beside him, and he looked up at me, his eyes shining. I sat down next to him in the grass, and he climbed onto my lap, and there we sat, gazing at the crimson maple tree, listening to the sounds of the birds and insects. His little body, usually bursting with movement and energy, was quiet and relaxed, watching.

He was smiling.

He was communicating.

He was sharing with me, the same way another child might point and say, “Look, Mommy! That tree is beautiful!”

He was telling me to stop, to pay attention, to not just acknowledge the tree’s existence, but to experience its beauty.

And it really IS a beautiful tree.

You know? Maybe my son CAN see heaven in a wildflower.

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