More Than Words: 2013

My Communication Journey

It's funny how life unfolds depending on the hand you're dealt. Carter has influenced my life path tremendously. He has take me on a unique and exceptional journey. Having a son with a disability has opened the door to a whole new world of people and organizations for me. Because of that, I've had some pretty interesting opportunities. To name a few, I've volunteered with the WR Family Network, the Abilities Centre and most recently with the Aphasia Centre. It's not likely I would've gotten involved with any of these organizations had it not been for Carter.

Through Carter, I also discovered my passion for communication. I believe very strongly that communication is a basic human right. Some of us need help getting our message across, but we all have the right to be heard.

Several weeks ago, I sat down at my computer to investigate what it would take to become a speech therapist. I mean, why not? I'm immersed in the world of AAC thanks to Carter, and as a result I've attended several workshops and learned a ton of stuff about AAC and language development. Maybe that's the career path I was meant to take.

But, after quite a bit of research and personal reflection, I decided that as passionate as I am about communication, being a speech therapist isn't really for me. Instead, I found my research turning toward how language is learned. That lead me to several websites for TESL programs (teaching English as a second language). Reading about that got me excited. It's an offshoot of my teaching qualifications and it's related to communication, but it's separate and very different from what I experience with Carter.

I started volunteering with the LINC/ESL continuing education program three weeks ago. Once a week I help out in an adult ESL classroom for two hours in the morning. After lunch I wheel the library cart (full of levelled reading books) to three different classrooms, stopping for 40 minutes in each to read with the adult students and support them in learning English.

Under one roof, I have been exposed to people from across the globe; places like; Vietnam; Guinea; Libya; Saudi Arabia; Afghanistan; Hungary; Poland; Ukraine; Congo; Iran; Honduras; to name just a few. I find it fascinating.

I've been immersed in the world of special needs since Carter was born. As a result I've met some amazing people and had some very unique experiences. I'm grateful for those experiences and credit them somewhat for my arrival back to the classroom with a renewed passion and interest.

Although my classroom time is much different than when I first started teaching, I'm enjoying my new volunteer position. How things unfold from here remains to be seen, but the research I'm doing these days is around what it will take to get my TESL qualifications.

I'll be sure to keep you posted so stay tuned!

Family, Friends & Fun at 40!

Twas the night before 40

And good friends we met,

At Famous People Players Theatre

The location was set.

There were a few honks

As we drove to the show

Thanks to hubby and big brother

Horns blare where I go.

At the theatre we admired

All the pics on the wall

Many influential people

Support this great hall.

The dinner was scrumptious,

Followed by a great show.

Indescribable, remarkable,

Here's the best part, did you know?

Employees at this dinner theatre

All have special needs.

They do not disappoint.

Expectations? They exceed.

You all should go see it,

This spectacular sight.

It filled me with happiness

On my special night.

After a good time with friends

On the eve of today,

I celebrated with my family

And what can I say?

I've reached that age in life,

Where great things lie ahead.

Middle age? Nah, new beginnings.

There's nothing to dread.

I can't wait to see what

the next forty years hold.

With family & friends near,

It's fun getting old.

Gorgeous card made by my talented (& much younger) friend, Claire.

To read more about Famous People Players Theatre click here.

Sweating? Me Too, But Not About Falling Behind

I'm mellllllting...melllllting!

This heat wave is unbelievable, isn't it? My brain is so fried I've lost the ability to blog. Well, not exactly.

Four months after setting my lofty goal to write a blog post every two days, everything but the temperature has dropped off here at More Than Words (if you're just tuning in and don't know what I'm talking about, you can read about my ambitiousness here).

I can't really blame the heat wave. The blazing temperatures have been around for the past few days, but my inconsistent blogging has been going on for about a month now. What can I say? Summer is here and heat wave or no heat wave, my schedule is all over the place. It changes weekly depending (mostly) on what my kids are up to.

My child free days are on hold. The house is filled with the pitter patter of little feet again. She-ya right! The house is filled with the stomping of growing feet again; feet that want to run and jump and bike and swim; feet that are always on the go. As a result, my writing has been put on the back burner.

I'm trying not to sweat it - being off schedule, that is. I wish I could say the same about the stomping feet and the unfathomably hungry, infinitely thirsty, provokingly squabbling mouths affiliated with those stomping feet. Those? Well, those are the very reason I wear antiperspirant (and have my fridge stocked with wine).

When the day camps and play dates, family visits, and holidays are done; when the need for ceiling fans and air conditioners, freezies and popsicles is gone; when the pool water cools, and the campfire and barbecue flames burn out, (and when those growing feet stomp back to school) my writing schedule will fall back into place again.

Until then, I'll leave you with a recap of the 25 blog posts I've written so far for my Not Being Able to Speak series. Click the links to check out the ones you missed or to revisit the ones you want to read again:

1. Actions Speak Louder Than Words

2. Talking With Your Mouth Full *

3. Your Secret is Safe With Me

4. Memorable Mispronunciations

5. A New Way to Cheer

6. A Silent S.O.S. *

7. 'What You See is Not All You Get'

8. Night Walkin' not Sleep Talkin'

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

10. To Teach Without Speech

11. Working On Your Core Takes on a Whole New Meaning

12. Communication Breakdowns

13. Overlooking Oblivious Orators

14. Keen on Communication Courtesies

15. Dancing Like Nobody's Watching instead of Singing Like Nobody's Listening

16. A Mother Knows the Words her Child Cannot Say

17. Getting Your Message Across However You Can

18. Giving the Silent Treatment is a Bit Ambiguous

19. Communication Starts with Model Behaviour

20. Read Alouds Reshaped

21. When Communication is Cut Off So is Too Much Hair

22. Not Necessarily 'Speech' less

23. Finding Community, Finding Empowerment

24. It's No 'Right' to Remain Silent

25. There's No Need to Churn Over It *

* my favourites

Stay cool! And stay tuned for updates on our fun in the sun (maybe a video or two...definitely some pictures).

Photo: Pixabay

#25 There's No Need to Churn Over It

Dairy goes again!

Carter keeps spilling his milk. He's done it at least four times this week during meals. Initially, my hubby and I lact - ations, er, patience and got sour with him. But, recently, didn't the little monkey shake things up and turn the whole situation into a funny episode which brought our annoyance level down to about 2%.

Here's the condensed version of the situation: Carter likes to take a drink and then set his glass down beside his plate. You know, right where his arm will knock it over? We're forever telling him to moove his glass away from the edge of the table, so it's up higher toward the top of his plate. This hasn't always been the best solution as he's been known to spill it while mooving it - just as it past-our-ize!

Phew! Move milk.

The other day Carter sat down for dinner, wiped his brow and said 'few' on his talker (I'm not sure where he learned this expression, but he actually used it in the right context). He didn't mean few as in not very many. He meant few as in 'Phew! That was close'. This became obvious when next, he moved his milk to the middle of the table and said, 'move milk'.

He was pretty proud of himself for having such insight. And let me tell you, I thought it was pitcher perfect. This time, we were flooded with laughter instead of spilled milk!

I've let flow my fair share of tears when it comes to Carter not being able to talk, but these days I've bottled those emotions. I lac - tose things he's been doing lately. No, I love them. I have always known that Carter is overflowing with potential; that he has way more to say than he is able to express verbally. It seems we've found the right formula when it comes to developing his language and communication. He's making all kinds of connections. He's using new words. The two seem to homogenize nicely, and the result? New udderances from my boy.

Thanks, Carter, for the reminder that there's really no need to cry over spilled milk or to churn over your inability to speak. I have the utmost confidence that your potential will continue to spillover and you'll keep milking it for all it's worth.

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.

#23 Finding Community, Finding Empowerment

The Breaking the ICE Canada conference is an event created by and for individuals who use Augmentative and Alternative Communication (AAC) and their families.

This conference is the only event of its kind in Canada and was designed to bring the community of people who use AAC together to share ideas, learn from each other, and create new friendships.

Breaking the ICE Canada was inspired by the Pittsburgh Employment Conference, a consumer centred conference for augmented communicators. It has proven itself to be a powerful force for change and a source of empowerment for an often marginalized group.

The Breaking the ICE conference committee includes individuals who use AAC, members of March of Dimes Canada, and clinicians from Ontario's AAC centres. (from the BTI website)

Carter and I recently attended the Breaking the Ice Conference in Toronto. I wrote about our experience on the Bloom blog. Click here to read my story.

Thanks, Louise Kinross for another opportunity to write for your wonderful blog!

#22 Not Necessarily 'Speech' less

If you were asked to list the characteristics of a competent public speaker, orator, speech maker; I doubt very much non-verbal, nine year old, AAC user would come to mind. But, like many AAC users before him (Stephen Hawking and Roger Ebert to name a few), Carter gave a speech last night at his school's end of the year Achievement Celebration.

He was one of seven students to step up to the mike and talk about one of the many events he and his fellow students took part in throughout the year. He spoke about the Terry Fox event and he did an amazing job! The speech was preprogrammed into Carter's device (which means he hit one button and the whole speech was spoken, rather than him having to hit different buttons to put the speech together word by word), but I was extremely proud of him for having the confidence to get up in front of a crowd and use his talker. Click here or see below to take a look and a listen (he's the only guy I know that can jump while talking and not have it affect his voice):

As if making a speech wasn't enough, my hard working boy brought home three awards! The first was for Academic Excellence in Science. The second; a participation award (again, who would have thought that a non-verbal boy would receive an award for participation?). His teacher told the audience that in class, Carter often has his hand up before a question is even asked - he's that eager to contribute. The third and final award for Carter was all in good fun and not a huge surprise: the Jokester award. That's my boy - ever the goofball, always with a perpetual smile on his face.

Receiving the Science Award

J&T help hold C's awards for a pic w/ his teacher.

Way to go, Carter!

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.

#21 When Communication Is Cut-off So Is Too Much Hair

Ray Stevens instructs the listeners of his Haircut Song; use a barber you know or you'll end up looking like Larry, Curly or Moe (see lyrics here).

In his 1993 song, George Thoroughgood demands; 'Get a haircut and get a real job!'

Both songs make light of the routine practise of getting your hair done, but what would it be like if you went in for a haircut and you were unable to communicate what you wanted done?

Dawn Kreutz tells her story in an article I came across recently. Here's an excerpt:

Dawn Kreutz of Eden Prairie still remembers the bad experience she had several years ago and how it made her feel. “Angry!” she typed on her communicator. She had gone to her regular salon for a trim. A new stylist “grabbed handfuls of hair and just cut.” Kreutz could not stop the stylist. Her mother Marilyn had stepped out for a few minutes and Kreutz hadn’t brought her communicator. When Marilyn returned and saw what was happening, she confronted the stylist, but the damage had been done. Two repair attempts left Kreutz with shorter hair than she wanted and a style that took months to grow out. Learning from the experience, Marilyn and Joanne Musick, Kreutz’s personal care attendant, now monitor salon visits carefully.
(Click here: Getting a good haircut to read the article in its entirety).

Can you imagine not being able to communicate with your hair dresser?

#20 Read Alouds Reshaped

Reading, reading, reading. Every night with Jack and Taylor we practise reading.

Carter, who's always been a book lover, gets totally engrossed in books that are read to him. Lately though, the focus has been more on Jack and Taylor reading aloud for practise.

I recently discovered the perfect app for Carter that allows him to do some reading aloud of his own. The app is called *I Like Books and the 'Read to me' option means that Carter can hear the story as he reads along.

I helped him get started and showed him how to navigate the pages, how to start the book over and how to choose a different book. It didn't take long for him to figure it all out and then I was no longer needed, but I stayed nearby and watched him engage in 'reading' as his eyes danced across the page following the highlighted words that were being read aloud. When a sentence was finished, he would often go back and tap the individual words to hear/read them again.

The stories are packed with core words that Carter can practise on his talker. Before long, I think he'll be able to move away from the 'Read to me' option toward the 'Read by myself' set-up where he will use his talker to do his own read aloud.

In my previous post I talked about two different presentations I attended, put on by well known AAC professionals. I learned of this app at one presentation, and at the other, I heard Dr. Pat Mirenda tell her audience that literacy for non-speaking kids is essential. If we teach them reading and writing they will be able to say whatever it is they want to say.

If we teach them reading and writing; the more things they'll know, and the more our kids learn, the more places they'll go!

*Read more about how you can customize the I Like Books series here.

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.

#19 Communication Starts with 'Model' Behaviour

Two weeks ago I listened to Dr. Pat Mirenda speak at *Holland Bloorview.

Last week I attended a one day workshop put on by Dr. Caroline Musselwhite.

I came away with lots of useful information from both presentations, but the pivotal message from these women (both experts in the field of AAC) is that too many people assume that language will magically happen if we simply give our non-speaking children a speech device.

Dr. Musselwhite spoke of speech therapists who complain when a child has had a device for three months but isn't using it very well. She then put things into perspective with this question, "When was the last time you heard a baby talk at three months old? Six months old? Even nine months?"

Likewise, Dr. Mirenda reported that the average child hears 6 million different words by the time he is three. How many symbols are non-speaking children exposed to when their caregivers communicate with them? Zero. Yet, we give those non-speaking children devices, on which language is represented by symbols, and then get frustrated when they aren't showing success with their device after three months?

We chatter away to our babies from the moment they are born and by the time they reach 15 to 18 months of age we start to reap the rewards. Some word approximations are finally mimicked back to us. Why should we expect our non-verbal children to be any different? They will imitate us too, but they need someone to model for them this unique, symbol based method of communication. They need to be shown how to use their device through modelling which needs to be ongoing.

Think about the hardest thing you ever learned to do. How many times were you shown how to do it before you had it mastered?

*Louise Kinross (editor of Bloom magazine) wrote a blog post about Dr. Mirenda's talk. It is worth reading and can be found here.

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.

#18 Giving the 'Silent Treatment' is a Bit Ambiguous

Carter was ticked off at me the other day - nothing serious. He kept stealing grapes from the fruit bowl that sits on our counter. He'd saunter over, help himself to a couple of grapes, pop them in his mouth and then grin like the cheshire cat. When I finally put a stop to his thievery, telling him he'd had enough grapes for now, he got right upset; to the point of crying (too much Night Walkin' the night before, I think).

He went back to the couch in a huff to finish watching his TV program. When I spoke to him a bit later he didn't even turn around to acknowledge me.

Wait a minute...did my non-verbal son just give me the silent treatment? Your guess is as good as mine.

This par-a-dox has been brought to you in part by a pair-a-grapes.

#17 Getting Your Message Across However You Can

'Aphasia is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing.' (National Aphasia Association)

While volunteering with an aphasia support group over the past few weeks, I've been reminded that a large percentage of communication is non-verbal. There are several important things that can be helpful when trying to decipher what a person with a communication disorder is trying to express: the content of the conversation, what's happening in the surrounding environment, and knowing about the person to whom you are speaking, to name a few. These things are especially useful when some, or all of the person's message is being communicated non-verbally.

I've experienced plenty of non-verbal communication with Carter, including sign language, facial expressions, eye gazing and gestures; like pointing, giving a thumbs up or thumbs down, and nodding or shaking the head. I felt better prepared for interacting with the aphasia group participants thanks to Carter.

During break last week, a gentleman in the group was having a conversation with a recreation therapy student (there on a co-op placement). The rec therapist made mention of the great weather and commented about getting out and about on the weekend. She asked the gentleman (that happened to be in a manual wheelchair) if it was a challenge for him to get around or would he be able to get out and enjoy the sunshine. Although the gentleman is able to speak, he sometimes has difficulty with word retrieval so his speech is not always fluent. He does quite well filling in the blanks with non-verbal communication though. He expressed (in words) that he would definitely be getting out to enjoy the nice weather and then he made a motor-like sound, just like a child would when playing with a toy car. The therapist didn't catch on to what he was trying to say and asked if he would be taking a bus ride or a car ride somewhere. He shook his head in frustration, said 'Vroom, vroooooooom' and made some gestures with his arms and hands. I asked if he had an electric wheelchair and his face lit up. He pointed at me and said 'Yes! Thank you.'

Whether we have a speech disorder or not, we all communicate in a variety of ways in hopes that we'll get our message across however we can.

Have you ever paid attention to your own non-verbal communication and how often you use it?

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.

#16 A Mother Knows the Words Her Child Cannot Say (if not, she becomes the Columbo of Communication)

Well, not literally, but a mother's intuition sure comes in handy when trying to figure out what 'her child cannot say'. Before Carter got his talker I was the the Columbo of communication, the Magnum P.I. of his wants and needs, piecing together what he was trying to communicate through his use of gestures, sign language and facial expressions.

Even now, I play the role of Detective Mom whenever Carter can't get his message across with his talker. I often need to look for clues in the surrounding environment when trying to figure out what he's trying to communicate.

You can read more about being a detective mom here and you can read about the harsh reminder of what it's like to be without Carter's talker here.

#15 Dancing Like Nobody's Watching instead of Singing Like Nobody's Listening

If you're like me and you find a catchy song on the radio your foot taps, your hands drum; you feel the need to sing along. It takes listening to a song several times before you catch on to the lyrics. Sometimes you think you've finally got them. You sing along more confidently until one day, weeks, months, maybe even years later you discover that the words you've been singing aren't the right lyrics.

My daughter, Taylor loves to sing along to the radio whenever we're in the car. Sometimes her brother, Jack follows her lead while I stifle my laughter from the driver's seat as I listen to them singing with confidence; songs like:

Put a Ring On It by Beyoncé

T & J's lyrics: All the single-etta, all the single-etta
All the single-etta, all the single-etta.

actual lyrics: All the single ladies, all the single ladies
All the single ladies, all the single ladies

Single-etta? Sounds like an Italian divorcée looking for a date.

How about the line from Tragically Hip's, Little Bones that I heard my husband singing back when we were first dating:

hubby's lyrics: They'd say, "Baby eat this chicken sub
It's full of all them little bones."

actual lyrics: They'd say, "Baby eat this chicken slow
It's full of all them little bones."

I certainly hope there aren't any bones in my chicken sub!

And one last one that I'll never forget; told to me by a high school friend who worked with someone that was very confused about some Deep Purple lyrics:

misheard lyrics: Slow walkin' Walter, fire engine guy.

actual lyrics: Smoke on the water, fire in your eyes.

The next time you're singing along to your music, whether you've got the right lyrics or not, belt it out for all the people like Carter who can't sing at all. He won't get caught singing like nobody's listening, but always, he dances like nobody's watching.

What song lyrics have you misunderstood?