More Than Words: April 2013

#12 Communication Breakdowns

Anybody remember the Seinfeld episode with the low talker? You know, the one where Jerry wears the puffy shirt?

Take a look: Kramer and his soft-spoken friend, Leslie start a new line of

clothing and Jerry accidentally agrees to wear it on the Today show.

This episode, that features Kramer's low talker girlfriend, is the perfect example of a communication breakdown. When you're not able to convey a message, or when your message is unclear or misunderstood, it may result in embarrassment, or worse yet; frustration and limitation.

I sometimes feel I could write my own Seinfeld episode based on how people interact with Carter. When he uses his talker, quite often people can't hear what he's saying. They lean in, eyes squinted, noses scrunched, muttering, 'What'd he say?' or 'What was that, Carter?'; and by the time he gets around to repeating it, the conversation has carried on without him. Unless he is in a quiet location with very little noise, it's a real challenge for his talker to be heard. There's a fine line between having the volume at a level so that he can be heard and having it at a level where it becomes uncomfortably loud; like a failed microphone test where the crowd is deafened before the concert has even started.

On occasion, I find myself leaning in when Carter is using his talker, and if I can't make out what he's saying, I end up reading the words on his talker screen. Interacting with Carter can be somewhat of a communication comedy of errors.

Seinfeld fans know that the sit com capitalized on observational comedy to draw laughs. It frequently exaggerated attributes and/or mannerisms of characters, making the show both relatable and memorable (who doesn't remember the episode where Jerry was dating a woman with man hands, or the one where George was accused of double dipping?).

My Seinfeld episode would be about a no talker and it would enlighten people about the challenges faced by those who communicate differently. While I wouldn't want the world to be laughing at people with complex communication needs, perhaps portraying their challenges in a humorous light might make those challenges more memorable. Perhaps it might create some awareness around the issues that AAC users face when trying to function in a society that is shaped so heavily by the spoken word.

(to be continued)

What are some communication breakdowns you've experienced?

Disclaimer: Views in the Not Being Able to Speak series are derived from my personal experience with Carter. I do not speak on behalf of others with complex communication needs. It is not my intent to minimize or disregard the power of expression that can be found through the use of augmentative and alternative forms of communication.

I Interrupt My Regular Programming to Say...

It's Volunteer Appreciation Week!

Correct me if I'm wrong, but I can't imagine any of you are getting paid to be here. So, since you're here voluntarily, I'd like to take a moment to appreciate you and to say thank you - with a lovely Thank You spelled out in french fries, no less. Yes, french fries! (I'll wait here while you take a second look...See? They're french fries).

Some of you joined me long before I started writing my new series. Some of you have come on board since. Whatever it is that brought you, and for however long you've been here, I'm grateful to you; my readers.

It's been a month since I wrote my post about being inspired to do things a bit differently here. I committed myself to writing 122 blog posts in this, my second year of writing at More Than Words. That means I've been posting every third day and I'm not going to lie, it's been a challenge.

I started my first six blog posts with a standard line: Not being able to talk means... and then I completed the sentence, wrote a few paragraphs and ended each post with a quote by writer, Cynthia Ozick: We often take for granted the very things that most deserve our gratitude.

Communication is essential to our daily functioning. It provides a means for making connections with others. The ability to speak affords us many privileges. It's a function that I feel blessed to have and one that I place great value on. My mindful appreciation is a direct result of the experiences I've had through raising Carter.

It took me a while to come around to the fact that I can spread my message without it being dominated by a negative introduction. While the information I want to share is of a serious matter, it's not always negative. My hope is that some of it may even bring a smile. As the great Bill Cosby once said, 'You can turn painful situations around through laughter. If you can find humour in anything...you can survive it.' So, the Not being able to talk bit can stay as a title for this series, but it's been axed from my blog post titles. I went back and created meaningful titles for my first six posts and I carried on doing so with the posts that followed.

As I enter my second month with my new series, I am up to post #12. Eleven more months and 110 more blog posts to go! I've brainstormed a list of ideas for future posts, but if you have any suggestions, I'd love to hear them.

Thanks for bearing with me as I figure out the finer points of how best to present my Not being able to talk series, and thanks again for joining me (and Carter) on this journey.

Photo credit: Pixabay

#11 Working on Your Core Takes on a Whole New Meaning

It doesn't mean eating more apples...

or strengthening your abdominal muscles.

AAC users work on their core vocabulary in order to communicate.

What is Core Vocabulary?

Core vocabulary is a small set of simple words, in any language, that are used frequently and across contexts (Cross, Baker, Klotz & Badman, 1997). Core vocabulary contains all parts of speech - nouns, pronouns, verbs, adjectives, adverbs, prepositions, conjunctions, and interjections and serves as a great medium for teaching language.

Core words are familiar and most of them are short - six letters or less. Only a few core words have more than six letters (for example, "sometimes" has nine letters).

From toddlers to seniors, core's simple words make up 80 percent or more of everyday communication and are the heart of language development. Action words like "want," "put," "get," nouns like "thing," "stuff," and "people," pronouns like "I, me, my, mine," and "he, she, it, them," form easy sentences with demonstratives like "this" and "that." Early adverbs like "here" and "there" enable all children to express themselves. "Put it here," "Get me this," and "I want that" are what little kids say when they are building their mean length of utterance (MLU).

Data suggests that children with disabilities build early language three-word phrases with core vocabulary (Baker, Hill & Devylder, 2000).

*The above information is taken from the Minspeak website. Click here to read more.

With a few hundred words, a person can say over 80% of what is needed (Vanderheiden and Kelso, 1987)

For people who rely on AAC, appropriate use of core vocabulary is essential to effective communication (Yorkston, Dowden, Honsinger, Marriner, and Smith,1988; Fried-Oken and More, 1992; Baker, Musselwhite, & Kwasniewski, 1999). If use of core vocabulary is low, communication effectiveness is likely to suffer.

*The above information is taken from a paper by Katya Hill from the AAC Institute.

Language is: asking, telling, commenting, correcting, directing, choosing, tattling, arguing...not just naming things.

With core words, now we're talking! Take a look:

Are you working on your core?

Photo credit: Pixabay Disclaimer: Views in the Not Being Able to Speak series are derived from my personal experience with Carter. I do not speak on behalf of others with complex communication needs. It is not my intent to minimize or disregard the power of expression that can be found through the use of augmentative and alternative forms of communication.

#10 To Teach without Speech

Eight days ago I had the pleasure of seeing one of the greatest orators of our time, live at Copps Coliseum in Hamilton. She is a role model, an educator, a mentor. She is genuine and funny, and her words and actions have impacted millions of people throughout the world over the past twenty-five plus years. Oprah Winfrey shared with us (her audience of over 14,000) her successes and failures and the life lessons she has learned from both.

"Follow your instinct. That's where true wisdom manifests itself."
Did I know what it would take to mother a newborn with feeding and airway issues; how to check the placement of, and then feed my son via, a nasogastric tube; how to suction a nasopharyngeal tube in order that his airway remain unobstructed? Did I know what to do when my son's speech did not develop; how to teach him to use sign language; how to get him started using a voice output device? Did I know what to do when his school situation went awry; how to get him the support he needed? Did I know what to do when I couldn't get him that support and it seemed there was no one to help us? The answer to each of these questions is, no. I followed my gut. I didn't know how any of it would turn out. My instinct was to educate myself as best as I could in order to move forward with the wisdom I acquired to do what (I thought) was best for Carter.

"Every single event in life happens in an opportunity to choose love over fear."
When I get caught up in fearful thoughts about what the future holds for Carter I become overwhelmed and unproductive. So, I try to take things one day at a time and stay focused on my love for Carter and how he deserves the best that I can offer him in the present moment (how's that for Oprah lingo?). I want to be productive, not overwhelmed and I want Carter to feel my love, not my fear.

"Doing the best at this moment puts you in the best place for the next moment."
One of the best things I've done to help Carter is to educate myself. When I study information from every angle, from all available resources, I feel that I am learning and growing and creating a solid platform from which I can step forward, toward whatever comes our way.

"We all want to feel validated; that we've been heard."
This is the very reason why I fight so hard on behalf of my non-verbal son. Carter has so much to say; so much to offer to those around him. Communication is a basic human right in whatever form it takes. Everyone has the right to be heard.

"Turn up the volume on your life." is Oprah's message.
I'll also be turning up the volume on Carter's talker, because he's got a lot to say and his message needs to be heard, too.

I went to Hamilton to hear Oprah speak about her life lessons, and I came away from her articulate presentation with the realization that I've experienced many of those lessons already - through Carter, without him ever having uttered a word.

He's no Oprah. He teaches without speech. But, my non-verbal son has taught me many life lessons.

Life is speaking to you, are you listening? ~~Oprah Winfrey

#9 The Following Blog Post May Contain a Boy with No Foul Language

I try to be careful with the language I use around all three of my kids, even though only two of them can actually repeat what I say. It's not easy. And it means finding replacements for the swear words that surface when I'm clumsy and crack my head on a cupboard door (That hurt like a son of a pup!), or when I drop something sloppy on the kitchen floor (Gosh darn it all!); when someone cuts me off while driving (Wiener brain!); when one of our electronic devices goes on the fritz (What the Sam Hill is wrong with this thing?); when I'm at the end of my tether with my kids' behaviour (Holy Mother of Pearl!); when...

Er, you get the picture.

If I happen to get upset and a curse word slips out, I don't have to worry about Carter repeating me. There are no bad words or swear words programmed into his talker, so while he may be exposed to bad language through classmates at school, via the TV or car radio, or from family members (I'm not shouldering all the responsibility here people), he doesn't actually have the means of expressing those words himself.

Here's one of my favourite examples of how parents use replacement words for swearing in order to keep things clean in front of the kids. This commercial makes it very 'apparent' how our use of language (and our whole way of life) changes after having kids.

The Mom, who's 'kind of a big deal' and her hubby, #1 Dad dedicate their message to all the mini van families out there.

When you're an awesome parent, "there's no mother-father swearing" in your house.

But, if you slip up, you won't hear your foul language repeated from a child who doesn't talk.

What are some of your swear word replacements?

Disclaimer: I have no affiliation with Toyota. I don't even drive one. I just think this ad is hilarious and I wanted to share it.

Views in the Not Being Able to Speak series are derived from my personal experience with Carter. I do not speak on behalf of others with complex communication needs. It is not my intent to minimize or disregard the power of expression that can be found through the use of augmentative and alternative forms of communication.

#8 Night Walkin' not Sleep Talkin'

I came across a unique and quirky blog that covers the topic I had chosen to write about for today's blog post. The blog is called Sleep Talkin' Man; my blog post topic: sleep talking.

The point I was going to make in this post was that when you can't talk, you don't talk in your sleep. Carter makes up for that by walking instead of talking. He's not actually sleep walking. He wakes up in the middle of the night and strolls around checking on everyone (mostly me).

After reading a few posts on the Sleep Talkin' Man blog, I'm thinking about setting Carter's talker on his bedside table and installing a hidden camera just to see what comes of it. Maybe there's more to this night walking business then I'm aware of.

If Carter were to grab his talker and say something like, "Zombie rugby could be a lot better, but they keep passing their arms.", or, "Elephants in thongs are not something you see everyday. Enjoy it.", and if I were to blog about it, I'd still have no explanation as to why he wanders around in the dead of night, but my blog would get a lot more followers. I know this because it's (sort of) been done already. The zombie, elephant statements are some examples of nighttime revelations made by the Sleep Talkin' Man.

Every night Sleep Talkin' Man's wife, Karen, takes a voice activated digital recorder to bed with her. Then every morning she posts the audio of her husband's nightly outbursts on her blog. The blog has been around since 2009 and her simple idea has lead to a huge following, and a book, and several talk show appearances.

I'm not optimistic that blogging about the exact opposite of Sleep Talkin' Man's content (not being able to talk, let alone talk in your sleep) will mean that I see the same results Karen Slavick-Lennard did, but a girl can dream (if she can catch enough zzzs when not being woken by her non-sleep-talker-night-walker son, that is).

Not being able to talk means no sleep-talking, but there's more than one way to disrupt a sleeping household.

What have you heard through the night lately?

#7 "What You See is Not All You Get"

Film critic, screenwriter and journalist, Roger Ebert passed away last week at the age of 70. Ebert began treatment for thyroid cancer in 2006. After several procedures he lost his lower jaw and as a result, his ability to eat and speak.

Click here, or see below to watch Ebert's 2011 Ted Talk: Roger Ebert: Remaking my voice. The running time is 20 minutes. Take a look. If not now, come back when you have the time. It's worth it. I promise.

For my own interest, I cited some of Ebert's most salient comments from the talk:

"For most of my life I never gave a second thought to my ability to speak. It was like breathing. In those days I was living in a false paradise."

"...the act of speaking or not speaking is tied so indelibly to one's identity."

"I'm aware that most people have little patience for my speaking difficulties."

"People are impatient."

"People talk loudly and slowly to me. Sometimes they assume I am deaf. There are people who don't want to make eye contact."

"We are born into a box of time and space. We use words and communication to break out of it and to reach out to others."

"How did I feel not being able to speak? I felt, and I still feel a lot of distance from the human mainstream."

"Because of the digital revolution, I have a voice."

And lastly, my favourite:

"What you see is not all you get."

Not being able to talk means that what you see is not all you get.

Thank you, Roger Ebert. RIP

#6 A Silent SOS

Old Man Winter was hanging around like a nasty cold, and March's lamb-like exit (after such a baa-aa-aa-d winter) was nowhere in sight. The snow kept falling and it stayed on (and on and on). When the wet, sloppy stuff fell, it meant mounds of fresh building material for the kids. What they built with that wet, sloppy snow is the cause for this story: snow tunnels. Have fun with them. Help your kids build them. Supervise their play. But when they're finished playing, please make sure you destroy them.

********************

After calling Carter from our back door, I stepped onto the front porch to call him again. His name fell from my mouth like an icicle falling from the eaves. There he was, not ten steps from me. His hat, mitts, and glasses strewn across the snow. Tears stained his cheeks and the desperate look on his face made my heart sink into my boots.

Carter was stuck in a snowbank where a previous tunnel had been dug. The tunnel had been abandoned and left to shrink in the melting sun, only to harden days later as the temperature dropped. Carter remembered that tunnel. He'd found it and wormed his way into the shrunken hole, still big enough to accommodate his gangly legs.

As I took in the sight before me, I felt sickened. I wanted to turn back the clock ten, twenty, thirty minutes; however long it took to make sure Carter stayed away from that hole.

I made my way over to him, prepared to pull him out, only to discover that his legs were twisted underneath him. Yanking him by the armpits, forcing his body against the rigid snow was not going to free him.

My husband, hearing me bellow, came to the rescue with a spade. He dug away the hardened snow, freeing Carter from the menacing tunnel that days ago had been a source of amusement.

I watched my husband dig, my brain reeling along in overdrive filling my head with worry. Could Carter's leg be hurt? His foot? What if something was broken or sprained? And then filling my heart with guilt. Why didn't I make him come inside when Jack and Taylor came in? Why didn't I check on him sooner?

When we finally examined Carter closely, the worst we discovered was that he was cold. He'd no doubt been frustrated and scared, but physically he was unharmed.

The incident served as a harsh reminder of Carter's vulnerability. He was powerless to help himself; distressed, alone and unable to call out for help. It made me feel sad about the injustice of his situation. And it made me feel angry at myself, knowing that he suffered unnecessarily because of my carelessness.

Not being able to talk means not being able to call for help.

What would you do if you couldn't call for help?

#5 A New Way to Cheer

There's no yelling at refs...

or hollering because you're unhappy about a call...

There's never any bellowing at coaches and officials like an overzealous hockey parent...

Not being able to talk means finding a new way to cheer at your brother's hockey game. But being a fan who claps and jumps up and down in excitement is a refreshing change from some of the uncivilised behaviour others have demonstrated in the world of hockey.

As a fan, are you a quiet observer or are you loud and unruly?

#4 Memorable Mispronunciations

'Daddy cook on the barcaboo?'

As a little guy, Carter was fascinated by the barbecue, to the point of being totally captivated every time Daddy cooked dinner on it. But, barcaboo was Jack's funny mispronunciation, not Carter's.

The perfect Xmas gift. His very own barcaboo.

'I love masawnya.'

Carter is a pasta man. He loves all noodle dishes, lasagna included. But, masawnya was his sister's mispronunciation, not his.

He's really 'into' his masawnya!

Makamoki is another one of his favourite pasta dishes, but makamoki is a mispronunciation that my mom and dad heard from me, not from Carter.

Preschoolers expand their vocabularies by experimenting with new and larger words that they've been exposed to. As a result, the path leading toward their school days is paved with loads of cute, funny and memorable mispronunciations. I'll never forget Jack's barcaboo blunder, or Taylor's masawnya mishap. For Carter, I simply won't have those same gratifying memories.

According to the Canadian Association for Speech-Language Pathologists and Audiologist (CASLPA), a toddler's vocabulary consists of roughly 200 words by age two, and up to 2000 words by age four.

Carter had two words by age three. Those words were kuh-kuh (cookie) and Gack (Jack). He uttered them a few times and then we never heard them again.

To this day the First Words page in Carter's baby book remains blank. There was simply nothing to write on the lines provided for First Sentence, Favourite Expressions, and Mispronunciations. I suppose I could go back and fill in the blanks with some of the things that Carter has expressed over the past year and a half with his talker, but that seems unfitting. It's his baby book after all, and he's almost ten years old.

The only words Carter speaks these days are 'ya' and 'uh oh' neither of which is a mispronunciation. Neither of which is very memorable.

Not being able to talk means no memorable mispronunciations.

Do you have any memorable mispronunciations?