Friday, 28 June 2013

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


You have the right to remain silent. Anything you say...

Well, I'm sure you know the rest. Most people are familiar with the miranda warning. But, outside of cop shows and action movies, unless you're in the habit of getting arrested (in the U.S.), there's no occasion for the so called 'right' to remain silent.

Those born with conditions that prevent them from speaking, and those who've had a stroke or brain injury resulting in the loss of speech, don't have a choice in the matter and probably wouldn't consider remaining silent much of a right.

Ensuring that Carter becomes a competent communicator is top priority to me. I often wonder why some parents and caregivers don't feel the same way. Why don't they advocate to give their non-verbal loved ones a voice? Is it because they're holding out hope that one day their loved one will talk? 

Maybe. Or, maybe they're unaware of the various AAC options available.

Maybe they don't realize that their loved one has the ability to communicate using AAC. 

Maybe they feel intimidated or overwhelmed by AAC. 

Maybe they have a lot of other things they're dealing with related to their loved one's disability or medical condition.

Maybe they feel discouraged by the lack of support available when it comes to augmentative communication. Quite often people are placed on long waiting lists for service. Perhaps they feel that when their loved one comes off the waiting list, the support they receive will be minimal and it will be challenging to help their loved one become a competent communicator with the limited support that's available.

Maybe they've gone through the process of waiting for service, and upon receiving service their loved one was not successful with the chosen method of AAC.

Maybe it's a combination of these things.

Whatever the reason, it's never too late to give someone a voice. Communication is a basic human right.  Everyone deserves to be heard. And in this day and age, those who need AAC should not be without.

I can only hope that more people will adopt this attitude because when you can't speak up, you rely on others to do it for you. You need an advocate; a parent or caregiver that will look out for you and protect your rights until you are competent enough to advocate for yourself. But how can you do that if you don't have a reliable method of communication? 

With that in mind, I took the liberty of revamping the miranda rights to make them specific to individuals with complex communication needs:


You have the right to a voice.

Anything you communicate in whatever manner possible can and will be acknowledged and respected.

You have the right to be assisted by professionals and care givers in order that you become a competent communicator.

When you decide to ask questions and communicate, you will be given extra time to do so and you will not be talked down to or ignored.

Knowing and understanding your rights as I have explained them here, are you willing to work hard with your team to become a competent communicator?



What would your answer be if you were unable to speak?  (I'm willing to bet it would be a resounding, yes.)





















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.

Tuesday, 18 June 2013

#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!

Thursday, 13 June 2013

#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.

Friday, 7 June 2013

#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?









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.

Tuesday, 4 June 2013

Tiny Dancer Tuesday


We interrupt our regular programming for Tiny Dancer Tuesday!
Taylor did a great job at her dance recital on the weekend. Isn't she a little darlin'?