More Than Words: May 2013

#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.

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.

#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?

#14 Keen on Communication Courtesies

In my last post I introduced you to the Slow Talker, the Baby Talker, and the Impatient Talker along with several other talkers - a term I usually reserve for Carter's communication device, but in this case a term paired with mannerisms people take on when speaking with AAC users.

Seinfeld's low talker taught us about communication breakdowns; his close talker about social awareness. My characters were created to help educate people about being courteous when communicating with people like Carter.

Take a look at the resources I found to help educate everyone toward being Compassionate Talkers:

Guidelines for Communicating with a Person who Uses AAC

You don't need special skills to communicate with a person who uses an AAC system. Remember that a person who cannot speak does not necessarily have a hearing or cognitive problem. The following tips will assist in communicating effectively.

Make eye contact.

Speak directly to the AAC user, not to the person who may be accompanying her.

Use everyday language, rather than jargon.

Use concrete language, not figures of speech or metaphors.

Do not speak loudly, slowly, or in an otherwise condescending manner.

Ask the AAC user to show you how he communicates yes and no.

Ask the AAC user to show you how she communicates using the AAC system.

If necessary, ask the AAC user if you can look for directions on how he communicates. These directions are often on the AAC users tray or in his communication binder.

Give the AAC user time to communicate. Using an AAC system takes more time than speaking.

Do not keep talking to fill the silence after you've asked a question. It takes time to construct a message using AAC. Try to feel comfortable with the silences.

If you are short on time and cannot communicate with the AAC user, be honest and reschedule the appointment for a day when you do have more time.

[source: Safeguarding People Who Use AAC, a CDAC (ACCPC) website]

Will you do your part to become a Compassionate Talker?

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.

#13 Overlooking Oblivious Orators

My last post was about communication breakdowns. I included a clip from a Seinfeld episode - the one with Kramer's low talker girlfriend - and I mentioned that when it comes to Carter's interactions with others, I could write my own Seinfeld-like sketch.

Before I introduce the cast of characters for my sketch, take at look at this oblivious orator in yet another Seinfeld clip:

I think we can all agree that speaking with a close talker would be awkward. It can't be easy to respond to someone who blatantly invades your personal space. There are certain unwritten rules of etiquette we follow when speaking to others and when someone breaches those rules it makes us uncomfortable.

When speaking with a person who communicates using AAC, it doesn't have to be awkward or difficult. For the most part, you speak to them the way you would speak to anyone else, but there are some rules of etiquette to follow as well.

When I observe people communicating with Carter those rules are often broken. Sometimes I can look past it because people don't know any better; other times people's behaviour is unacceptable.

With those thoughts in mind, my Seinfeld sketch is starting to take shape.

So, without further ado, I'd like to introduce you to my cast of characters:

Carter - the star of the show! A charming and handsome young fella with a killer smile. He uses an AAC device (talker) to communicate. He is easy going and very sociable (when comfortable in his environment).

The Slow Talker - speaks slower to Carter. He/She assumes that because Carter doesn't talk, he won't understand what's being said to him

This role could be played in conjunction with:

The Loud Talker - speaks loudly to Carter as though he is deaf.

The Cooing Babytalker - speaks to Carter like he's a toddler. He/She assumes that because Carter can't talk, he is not intelligent and can't understand what is being said to him.

The Impressed Talker - encounters Carter and thinks that using a speech device to communicate is 'pretty cool'.

The Unmindful Talker - talks/asks questions to Carter's caregiver instead of asking Carter directly; as though through some form of telepathy the caregiver can read Carter's thoughts and know exactly what he wants to say and will therefore speak on his behalf.

Not to be confused with:

The As-though-he's-not-there Talker - talks about Carter, and other issues, in front of Carter as though he isn't there, or as though he is deaf.

The Impatient Talker - doesn't give Carter enough time to formulate a response on his talker. He/She carries on talking without giving Carter a chance to participate in the conversation.

This role could be played in conjunction with:

The Answer-for-him talker - speaks up on Carter's behalf before he has a chance to answer for himself.

Phew! There are more characters here than I had imagined. Perhaps this will turn into a season's worth of episodes instead of just one sketch.

Be sure to tune in next time for some important lessons learned from all of these interesting characters!

(to be continued)

Do people ever speak to you in a manner that you don't appreciate?

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.