Reading & Writing . . . so very exciting!

Books related to disabilities? I've read my fair share, to educate myself, and to try and find answers to the many questions I've had over the years about Carter's 

challenges.

These three books (that I really enjoyed) have protagonists who use AAC to communicate:

I Have No Secrets by Penny Joelson 

           Out of My Mind by Sharon Draper          

             Say What You Will by Cammie McGovern

 Here are a few more I've enjoyed that have characters with disabilities:

Wonder by R.J. Palacio

                                                      Rain Reign by Ann M. Martin

Rules by Cynthia Lord

Yes, the disability books I've been reading lately are all fiction: middle grade and young adult novels. 

And why is that? 

Because you're supposed to read what you want to write. And for some time now, I've been working on my own middle grade novel.

Writing a book is a lofty goal. I thought the book I would someday write would be the story of Carter's life. I've told a lot of that here, including his journey with AAC, but I wanted to step away from memoir writing. 

Instead, my story is about two young girls who are total opposites. One is a neat freak and the other, not so much. 

It came out of a writing prompt. I started writing and never looked back. Go where the writing takes you (or so they say). That's what I did and guess what? It didn't take me down a path that had anything to do with AAC or disabilities.

Maybe someday I'll try and tackle a story like that. For now, I'm happy to share, promote, and recommend the books above. 

I'm also happy to share something very exciting...

(Drum roll, please.)

Last year, I submitted the intro of my middle grade novel to CANSCAIP's Writing For Children Competition and I was long listed! What a huge and wonderful surprise! 

If I'm ever going to finish my story, I'd better get back to it!

Happy reading!

Is AAC Going to the Dogs?

Meet Stella, the Catahoula / Blue Heeler. She uses a sound board to talk.

A dog who uses AAC to communicate???

Yes, a dog who uses AAC to communicate!

This article in People tells all about it.

There's video imbedded in the article that shows Stella in action, or you can go to the Hunger 4 Words YouTube channel here.

You can read more at Hunger For Words, where Christina Hunger, speech language pathologist blogs about teaching her dog to talk!

You can also follow @Hunger4Words on Instagram to watch Stella do her thing.

                                      

Speechless

Back in October, I responded to a tweet by Minnie Driver: 

Have you seen her show, Speechless?

Minnie plays Maya, a mother of three.

"Maya is a mom who will do anything for her husband, Jimmy, and kids Ray, Dylan and JJ, her son with cerebral palsy."  ~abc.go.com

My family loves the sitcom because we can relate to it. Our family has a lot in common with the DiMeos. The biggest one being that JJ uses AAC to communicate, just like Carter.

I love Minnie's character, Maya. She's quirky, but she's also ruthless when it comes to getting her family members what they need, especially JJ. 

When I received a response from Minnie, I was the one who was 

Breaking Bad Does AAC

I've been meaning to write a post with an update on what I've been up to lately, but what I've been up to lately has me so busy I haven't had the time!

So, in a week or so (after my exam - oops, did I spoil it?) I'll fill you in. In the meantime, I'll leave you with something else I've been meaning to share.

Have you watched the Emmy award winning series, Breaking Bad? We quickly became addicted in this house, after watching just one episode. We're anxiously awaiting the release of seasons six on Netflix (or for the DVD fairy to drop it on our doorstep).

Not only is Breaking Bad a wildly popular series, it has won points with disability advocates everywhere thanks to RJ Mitte, the actor who plays the son of main character, Walter White. RJ is a phenomenal actor who just so happens to have cerebral palsy. 

But here's what got me: Breaking Bad actually features a character using AAC!

Take a look at this scene where DEA agent, Hank Schrader has been brought in to the station because his colleagues believe that Hector Salamanca, former high-ranking drug runner with the Juarez cartel (rendered speechless due to stroke) is going to reveal critical information about a current drug ring. 

Hank should know better - Salamanca is old school and wouldn't be caught dead snitching. His message put a smile on my face though as it showed AAC (with a little reading between the lines) in its true form: being able to say exactly what you want to say when you want to say it.

#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.

The Little Red Hen: Special Needs Version

Once upon a time there was a boy named, Carter. Things that came easily to other children did not come so easily to him. He did not develop speech in the way that other children do. Instead, he learned to communicate using gestures and sign language.

One day, after 3 and a half years of waiting, Carter came off a very long waiting list and was eligible to receive services in augmentative and alternative communication (AAC) at the local children's development centre.

He was prescribed a high tech voice output device and his family was very happy that he would finally have a voice.

"Who will support my son in learning the constructs of language so that he can become a competent communicator with his speech device?" his mom asked.

"Not I," said the speech pathologist at the local children's development centre. "I am here to help you obtain a device for your son. Then I will provide some basic support with device programming but because our waiting list is so long your son will then be discharged from our services and his school will be responsible for supporting his communication needs."

When Carter went to school that fall with his talker, his mom had a meeting with the school board speech pathologist and the classroom teacher to talk about how excited she was that Carter finally had a voice output device. She provided lots of information about the device as well as suggestions on how Carter could use it during class activities. Carter's mom remembered that a communication disorders assistance (CDA) had worked with Carter the previous school year so she asked,

"Who will support my son in learning the constructs of language so that he can become a competent communicator with his speech device?"

"Not I," said the school board speech pathologist. "I will consult with his teacher and make suggestions,  but then it will be up to her to help your son learn to use his device within the classroom."

Carter's mom looked to the teacher.

"Not I," said the teacher. "Your son's device is very overwhelming and complicated. I am a new teacher and I have all these other students to worry about."

Carter's mom was not happy with the answers she received. She asked about whether the communication disorders assistant (CDA) would work with Carter and was told that he would receive very few, if any sessions with a CDA. She asked if the Educational Assistants could help Carter with his device but was told that their time would be divided equally between all the students in the class with special needs so Carter would not receive any one on one help.

"We will do it ourselves," said Carter's mother and father. "We will do whatever we can to help Carter learn to use his talker. But there must be someone out there who can help us support our son so that he can develop functional communication skills."

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

Throughout Carter's childhood I've gratefully accepted whatever professional help that's been available for him and I've done my best to work with those supporting him. But the truth is, the services provided have not always been adequate.

Perhaps the problem lies with budget cuts or a lack of funding for programs, or the fact that Carter has complex needs in specific areas. Or perhaps it's due to the people we've had to deal with. Whatever the reason, I've found that too often the answer to my question, "Who will help us?" has been, "Not I."

Just over two years ago, my husband and I became so frustrated with Carter's school situation, and with the lack of support around his communication needs, that I decided to research other alternatives. What would it take for Carter to be challenged academically while receiving support with his talker?

My search began within our local school board. But, I quickly realized that they could not provide what Carter needed.

So, I decided to investigate private schools and I found a few that warranted visiting.

One school in particular stood out from the rest and after sitting down with the school's administrators to hear about their mandate, about the services Carter would receive, and about the supports that would be put  in place if he were to attend, I came away feeling elated by what I'd learned but at the same time feeling like I wanted to cry.

My husband's reaction as we got in the car after the meeting was one I will never forget. He shook his head, then looked at me and said, "Now what do we do?"

Of the schools we'd investigated, this one was a good fit, no, a great fit, and we both knew it. But there was one major problem - the school's location.

After weighing things out, and exhausting all possible scenarios (and ourselves in the process), my husband and I came to a decision. We had to try to somehow make this work for Carter. We did not want to look back in five, six...ten years and say, "If only we had..."

And that's why, just over one year ago, our family moved from our home town; the area where my husband and I grew up, where our family and friends live, where my husband's business is located, to a place an hour and a half away - on the other side of Toronto.

Some might say that it was drastic to move away from all that we know and love, and from our family's main source of income. Maybe that's true. But, we felt we had to give it a shot.

We've lived here for just over a year and Carter has been attending his new school for that long as well. He even attended during the summer months.

Is the situation ideal? As ideal as it can be. Five days a week my husband commutes back and forth across Toronto for work, to and from the place we used to call home. What should normally take an hour and a half can often turn into a three hour drive (or longer), depending on traffic. Enough said.

Has Carter found success at his new school? So far, yes (thank goodness!). And he is being challenged academically while receiving support with his talker.

I got tired of the "Not I" response that I received when asking for help. But I didn't know where to turn for support. So, my husband and I took things into our own hands to try and solve the problem ourselves.

In an effort to improve the support system for those who are experiencing similar issues, I'm involved in a project created by Kilometres for Communication to develop an AAC network. The network will bring the AAC community - parents, AAC device users, and professionals (SLPs, OTs, CDAs, etc.) together.

Although the project is in its early stages, once up and running, the AAC network will be a place to turn for anyone who has a family member or close friend who needs, but does not have, adequate access to AAC services. For those out there asking, "Who will help us?" the answer will be a resounding "We will!"

Go, Dog. Go! A Great Book for Practicing Core Words

When it comes to AAC, core words are where it's at. What do I mean by core words? Here are some examples: want, get, he, she, it, this, that, here, there, thing, people, mine, and me. Up until now you probably haven't given this concept much thought, but core words are words that we use all the time when speaking. Here is a better definition (click on the link for more info):

Core vocabulary is a small set of simple words, in any language, that are used frequently and across contexts (Cross, Baker, Klotz & Badman, 1997).

Ideally, when someone uses an AAC device to speak, their device will have as many core words as possible on the main page so that those words are easily accessible. This will allow them to communicate quickly and efficiently by combining core words into phrases.

If a device user is in the early stages of language development and they are starting to put two or three words together, their core word phrases might include, want eat, need drink or like that (similar to what you would hear from a toddler who is starting to talk). These aren't full sentences but the message that is being communicated is evident.

Carter has been combining two and three words on his talker for some time now. He is starting to add more words to his phrases and he continues to surprise us with the things he comes out with. The other day he was watching The Lion King and I heard him comment, "The weather is stormy." Indeed, there was a storm happening in the movie. Then the scene changed, the sun was rising and Simba (the lion cub) was jumping on his dad (Mufasa) trying to wake him up. Carter didn't miss a beat. He spoke up and said, "Good morning, lion."

I always knew that Carter understood a lot more than he was able to demonstrate. With his talker, he's finally able to start showing us just how much he 'gets'. His utterances are getting longer and more involved. In fact, he is now using location words like on, in, under, up, down, etc.

One of his favourite books is a book by P.D. Eastman. It's called Go, Dog. Go! For Carter any book that has dogs in it is a hit, but this book is doubly awesome because it has dogs and it's full of all kinds of great vocabulary that he can practice on his 'talker' when we read together.

I love the book too. It's funny and creative and it's a great way to introduce and practice several language concepts like colours, location words, and some verbs as well (go, work, play, like).

Jack and Taylor are now at a stage in reading where they are able to read the book with Carter. I love seeing my kids huddled together on the couch sharing books. When it's a book they all enjoy and it helps with Carter's language development, all the better.

 Go, Dog. Go! gets five stars from this family -- a great book for language development and for fun family reading time.

Dear Parent(s)

of the special needs child who is just like my son,

Where exactly are you? I've spent years trying to find you and I haven't been successful.

Your kid is 'developmentally delayed', non-verbal, has Childhood Apraxia of Speech and dysarthria, oral motor issues that include drooling, messy eating, and the inability to clear food from his/her mouth consistently. Fine motor skills are delayed. Hands are weak (not so great with those fastidious little tasks that we all take for granted like buttoning buttons, zipping zippers, colouring/printing, etc.). There are sensory issues, mostly with loud noises (mega phones, loud speakers, etc.), but also with proprioception and balance. All this is rounded out with an intellectual disability. Your kid was born with Pierre Robin Sequence which caused a cleft palate so the root of the problem is likely a genetic syndrome (one that has yet to be discovered or named).

Are you reading this saying...ya, that's my kid?

Anyone?

Nah...I probably would have found you by now because believe me, I've looked -- searched long and hard. I mean, is it not human nature to want to find someone experiencing the same thing that you are so you don't feel so alone? That's how I feel and that's why I've been looking all over for you.

Don't get me wrong, during my search for you I've been able to find support from some great parents whose kids have had similar issues to my son. But the parent whose kid is exactly like him? I haven't found you yet.

Some of the parents I have connected with have had kids with major speech issues like Carter. But inevitably at some point the differences between their kids and mine became apparent. Their kids made progress in speech therapy. Their kids had spurts of speech development. My kid did not.

About two years ago, if you had been around, I would have asked if you'd been given the same advice I had -- to get your kid the best augmentative communication device (a.k.a. talker) that you could. We could have cried on one anothers' shoulders and fretted about what this meant for our childrens' futures.

Carter has an AAC device now. He got it a year and a half ago. The process was not without headaches. But the biggest headaches have been around trying to get him the support he needs to learn his device and to learn the constructs of language.

We could share stories about the challenges we've experienced because of our kids' communication issues, about the injustice of waiting lists and the lack of adequate support for AAC users. I could tell you that now that we have Carter's device I feel like we're in some foreign land speaking a language that no one else has heard before. And maybe you'd tell me that you feel the same way.

We could have those conversations...if I could find you.

I'm not giving up. I still have hope that you're out there somewhere.

And when we finally do meet, we'll share, we'll gripe, we'll laugh, we'll cry...we'll try and make sense of the struggles and triumphs we've shared with our special kids.

Until then I'll continue making connections in the AAC community in hopes that one of those connections will be with you.

Yours in anticipation,
Stacey

Meeting other Cool Communicators

I attended a convention of sorts on Sunday at Holland Bloorview Children's Rehabilitation Centre. The event is called Breaking the Ice and it is put on by the March of Dimes and ISAAC Canada for adults and teens who use AAC (augmentative and alternative communication), professionals in the field of AAC, and parents and family members of AAC users. I didn't take Carter because I didn't think the program would be suitable for an active eight year old.

The day consisted of various speakers and presentations and it finished off with a screening of the movie, Only God Could Hear Me.

I met some amazing people and I learned some things too. Here's what I enjoyed most about my experience:

• meeting Jess, Emily and Carolyn -- three adult women who use voice output devices to communicate. 
• speaking with Jess and hearing about what she has accomplished.
• listening to Skye Wattie and his mom, Gail Fisher-Taylor tell about their trip across Canada to raise awareness and funds for people who use AAC.

And WOW...

• I actually got to meet Gail Fisher-Taylor and her eldest son, Kerr Wattie. He is a cool communicator just like Carter (I'm borrowing that term from Gail, Skye and Kerr. Love it!).

To me, Gail, Kerr and Skye are like celebrities -- VIPs in the world of AAC. So, meeting Gail and Kerr really meant a lot to me.

Skye and Kerr Wattie

Unfortunately, I did not get to meet Skye. He is Kerr's younger brother and what an inspiration he is. Fed up with the treatment his brother, Kerr was receiving as an individual who communicates differently, Skye decided to do something about it. What he decided to do was no small thing. Over the course of two and a half months, 19 year old Skye rode his bike across this vast country in an effort to raise awareness and funds for people who use AAC. The campaign was called Kilometres for Communication.

I followed their blog last year which tells the amazing story of their cross Canada trip.

Here are some links (also embedded above) where you can read more about the Kilometres for Communication campaign:

Kilometres for Communication website     Kilometres for Communication blog           

Kilometres for Communication on YouTube