Tuesday, 18 December 2012

A Most Interesting House Guest

We've been having a lot of fun at our house lately with a most interesting house guest. Her name is,  MunchMunch and she is an elf. Yes, you read right, an elf.

The kids actually named her. Jack came up with the name and it was resoundingly seconded by Carter and 'thirded' by Taylor.

Although MunchMunch is female, we seem to be in the habit of referring to her as a 'he'. It could be that she's miffed about that and therefore gets up to no good. But more likely, I think these helper elves (that seem to be coming out of the woodwork lately) are very much mischievous little creatures.

Several of the kids on Jack's hockey team have elves staying with them as well and I must admit, some of the stories I've heard about their elves make MunchMunch's antics seem tame.

Before I share some of the shenanigans MunchMunch has been getting into, here's a bit of background info for those of you who aren't familiar with the story behind Santa's little spies helpers:

"Have you ever wondered how Santa knows who is naughty and who is nice?  

The tradition begins when Santa sends his scout elves out to Elf Adoption Centres. Waiting for their families to bring them home, these patient elves hibernate until their family reads The Elf on the Shelf book, and gives their elf a very special name. Once named, each scout elf will receive its Christmas magic and become a part of the family’s Christmas each and every year.  

Excellent listeners and even better observers, these scout elves are the eyes and ears of Santa Claus. Although they cannot be touched, or else they may lose their magic, the elf will always listen and relay messages back to Santa. 

Each night, after the family goes to bed, the scout elf uses his magical Christmas powers to fly back to the North Pole. Once there, the elf will make his or her daily report to Santa.

Before the family awakes each morning, their special scout elf will fly back to their home from the North Pole. However, since these elves like to play games, don’t expect to find them in the same spot!  These elves love to play hide-and-seek with their families. 

On Christmas Eve, the scout elf will listen for Santa’s bell and then fly back to the North Pole until the next season."

(from the Elf on A Shelf website)

Take a look at some of the places we've found MunchMunch so far:

Oh my!

She's a reader!
And she's musical! Is that Jingle Bells she's playing?
What a mess! Pretty obvious who is responsible.

This morning the kids couldn't find MunchMunch anywhere. 

Instead they found her picture pasted all over the house! Oh MunchMunch, you were a busy elf last night!

Take a look...
C laughed when he saw MunchMunch's picture on his talker.
There were even pictures in the fridge!
And on the kids' stocking hangers. She covered up the kids' pics!

It was a busy morning with everyone running around looking for MunchMunch - and her pictures. There were pictures in shoes, in the dog's dish - even in the car. But where was MunchMunch?

Jack and Taylor finally found her in our office.

Take a look...
Caught red handed. Note the camera, scissors, tape & scraps of paper. You busy little elf, MunchMunch!

Gathering all the pictures in one place.

Thirty-two pictures were found in total.

Taylor found the first one when she got up - on the handle of the toilet in the kids' bathroom!

Carter's communication book came home with a note telling of a picture found in his lunch bag. 

And Jack created quite a ruckus in the dressing room at hockey practice when he pulled out his helmet and there was a picture of MunchMunch taped to the front of it.

Where will we find our dear elf tomorrow, I wonder? 

Sunday, 9 December 2012

The Weeks Before Christmas

In the weeks before Christmas,
the schedule is packed.
Not one evening is open, 
I'm feeling quite whacked!

Hockey practises and games,
dance lessons and swimming,
Carter's talker group too,
fill our weekends and evenings.

The days are so busy.
As a stay at home Mom,
I can't even imagine
holding a job too, like some.

I'm still volunteering.
At work hubby's hopping.
Our regular routine 
plus lots of gift shopping!!!

To our busy schedule  
is added such clatter,
I go through my day 
feeling like the mad hatter.

The hectic yet magical
season is here.
School concerts and parties,
 Santa's visit is near! 

And the children, unfazed 
are just happy to be,
on a hunt for their elf,
Where's she hiding? Do you see?

We'll survive, we will manage,
as all families do.
In fifteen days it'll be over
And the year will be through.

For now I will try
to embrace all that's here.
With this season of family,
of giving and good cheer.

Then hubby and I
will totally collapse.
We'll settle right in
for some long winter naps.

(What? Who am I kidding?
That won't be the scene.
We'll just start all over
In two thousand and thirteen!)
Our Elf on a Shelf, MunchMunch (the kids named her - don't ask me!)

Thursday, 29 November 2012

Guest Post

I was recently contacted by Abby Brayton- Chung about doing a guest post for her blog, Notes From a Pediatric Occupational Therapist. Abby lives in New England and she blogs to share information and resources with other pediatric OTs as well as their clients.

She wondered if I would be interested in contributing to the Parent's Perspective section on her blog.

What a great opportunity to reach out to other parents and professionals.

Here's what I shared:

Thanks, Abby!

Sunday, 4 November 2012

Life Lesson Reminder: Halloween Style

Halloween is not one of my favourite holidays. The weather is usually questionable and that lovin' feeling I once had for costumes and all things dress-up, well, I've lost it. But, I braved the sloppy, wet, conditions and took one for the team (for the kids' sake).

Don't get me wrong, I don't begrudge kids for being super excited, candy seekers, running from house to house in pure exhilaration. Halloween is a right of passage for them. But I'm not a kid anymore so I reserve the right to express my feelings about the sugar high holiday.

When the night was all over I reflected on my time spent traipsing around our neighbourhood with my three kids and I found I had a better appreciation of my not-so-favourite holiday.

Thanks in no small part to Super Mario...er...Carter, I was able to see things in a new light. One of Carter's greatest hidden abilities is that he can make you take a different perspective on things. He puts a new spin on the everyday that can be quite liberating.

So, on that dark and stormy night, I came away with a lot more than just mounds of treats and a 24 hour sugar rush, I came away with a reminder of some of life's important lessons...

1. Less is More. Not everyone is in it for the loot. Carter didn't even want to carry his treat bag. He left that job up to me. He signed 'more' after every house we visited but he didn't mean that he wanted more sweets and treats, he meant, 'Let's keep going because this is fun!'

But of course! That's because...

2. It's all about the experience.  For Carter, it wasn't about being first to each neighbour's door or getting the most candy (see #1, re: me carrying his treat bag). He was just thrilled to be a part of the adventure. He was wearing a costume and he was going out with his siblings for some nighttime fun in the neighbourhood.
When we arrived back home at the end of the night, J & T sorted through their bags and they made sure to tell their Dad about everything they got. Carter, well, he tapped his chest in a 'me too' gesture and pointed to his bag to ensure Dad knew that he took part. Then he promptly abandoned his loot and that was that.

3. Take time to notice the little things. An animal lover at heart, Carter was much more interested in seeing the pets at each house we visited than getting candy from the adults at the door. So much so that he almost went in to a few houses to give the dogs a rub to say hello.

4. Be happy with what you've got. In his homemade Super Mario costume, Carter actually looked more like a hip hop artist at a Farm-Aid concert, but in his mind he was Super Mario and it seemed that he could've cared less what anyone thought of his costume. He had on his overalls, his red shirt and red ball cap. There was a masking taped 'M' on his hat (the best I could do without spending a ridiculous amount of money on an authentic Super Mario hat that would be worn once). The smile on his face said it all and it completed his costume.

We'd all do well to take a different perspective now and again and I'm glad that Carter reminded me that...

 5. Sometimes it's all in how you look at things.

Monday, 29 October 2012

Carter's Communication Journey

I wrote Carter's story (below) to be included with others on the Kilometres for Communication website. All the stories on the site are written by people from across Canada who communicate differently.

I've shared lots of info about my son on this blog so you wouldn't think I'd have a problem putting something together, but I wasn't sure I could capture what Carter is all about in just a few paragraphs. I tried to mention some of his strengths and interests, and of course, a little of his history. I didn't want to focus solely on his communication as that's just one part of his story, but in all fairness it is a fairly big part at this stage in his life as we try to support him in developing his communication skills.

To help get my creative juices flowing, I thought back to a short bio I wrote about myself that I've used when submitting pieces of my writing to various contests and websites. I thought about the things I highlighted about myself (past experiences, interests, family, etc.).

Then I thought about my bio on Twitter. You're given a mere 160 characters to define who you are so you have no choice but to keep it short and sweet and to the point. As a warm-up I decided to write a 160 character bio for Carter:

Always smiling, loving & goofy, resilient & easy-going, lover of books, animals, water-play and the outdoors, brother of two, partner in crime=Bentley, cool communicator. 

I really wanted to add, Apple of his Mom's eye, but, that would have been too long for the 160 character limit.

After much contemplation, here's what I finally put together for Carter's story:

Carter was born with Pierre Robin Sequence (small lower jaw) which resulted in a cleft palate. Although he came home from the hospital three days after his birth, Carter was admitted to McMaster Children's Hospital five weeks later. He was challenged by feeding and airway issues and he struggled to gain weight. A fighter from the get go, Carter returned home after a two week hospital stay, and with medical interventions to help with his feeding and breathing issues, he continued to thrive.

Just before his first birthday, Carter showed the same resilience when he had his cleft palate surgically repaired.

My husband and I were prepared for the increased likelihood that Carter would need speech therapy. We knew it was probable that Carter would have articulation problems when his speech developed (common in children born with a cleft palate). What we weren't prepared for was his need for occupational therapy, physiotherapy, and behaviour therapy as well. Carter didn't follow the typical path of development and he required intervention in all areas.

Regular speech therapy sessions became part of a weekly routine, not because of articulation problems but, because Carter had a severe language delay. Years of therapy would prove to be futile as speech never came for Carter.

Instead, he communicated with facial expressions and eventually sign language and gestures. We marvelled at his easy-going nature and wondered how he wasn't more frustrated when he was not readily able to communicate his wants and needs. But he was, for the most part, a content little guy, happy to abandon his first choice and move on to something else if what he wanted wasn't made available to him.

It was a struggle coming to terms with Carter's lack of speech development. The doctor explained that it was not related to the Pierre Robin Sequence or cleft palate. Although she mentioned it was likely related to a 'yet to be discovered' genetic syndrome, she was unable to tell us why Carter's wasn't talking.

A speech pathologist from the U.S. diagnosed Carter with Childhood Apraxia of Speech and dysarthria, but there was still no explanation as to why he had these conditions. Eventually the 'Why' questions were overshadowed by our concerns around Carter's lack of functional communication. We needed to give Carter a way to express himself so that he would be understood by everyone.

We bought Carter a Nintendo DS and started him using a speech program that ran on the device (this was just before iPads became available). He loved it! I programmed various things into the device and Carter was able to label items and take part in basic interactions. It was a great introduction to a simple speech generating device for Carter but he quickly outgrew its capacity. Eventually we were able to get him a Vantage Lite speech device which he has been using for almost two years now (since December 2010).

We continue to watch with excitement as Carter's communication skills develop. A natural goofball, Carter's sense of humour has blossomed with his new found capability to speak more freely with his talker. He tells jokes, gets into potty humour with his brother and sister (underwear anyone?) and he loves to comment and contribute to conversations as best as he can. There's still a lot he needs to learn in terms of language skills but he's proven his capability for learning and I'm confident he'll continue to make progress.

In the meantime, Carter is likely to be found with his younger brother and sister doing one of his many favourite things, like splashing in the pool in the summer, downhill skiing in the winter, perusing books, playing cars or hanging out with his partner in crime, Bentley (service dog extraordinaire).

Friday, 12 October 2012

I Believe in My Son, Will You?

You're always gonna find
It was worth it
If you just believe

Suzie McNeil's lyrics from her song, Believe have been dancing through my head since Tuesday night. They are a reminder that although there have been plenty of times when I've felt uncertain about Carter's future, I've never stopped believing that he will someday communicate functionally.

On Tuesday night I gathered with a group of parents and professionals to take part in Holland Bloorview's screening of the movie, Certain Proof: A Question of Worth.

The movie is a feature documentary about three children living with significant communication and physical disabilities, who struggle against the public schools in an emotional battle to prove their worth.

*Take a look at the trailer:

After viewing the movie, I participated in a panel discussion and was given the opportunity to speak.

I introduced myself to the audience and shared that my 9 year old son, Carter uses a Vantage Lite speech device to communicate. I didn't speak of the challenges we've faced with the public school system. I didn't speak of the struggles we've had trying to find support for Carter with his device.

Instead I reflected on some things from the movie that truly resonated with me: the loss of parental dreams and the challenge of replacing those dreams, the concern that children who communicate differently are often ignored, and the importance of making sure those childrens' voices get heard. Carter, and others like him, should be given every opportunity to learn to communicate functionally and to practise their right to communicate.

Looking back on Tuesday night's discussion, I wish I'd spoken to the audience about my belief in Carter's abilities and about how important it is to believe in your child and not give up hope.

When one of the moms in the movie broke down crying after having taken her son, Josh to a speech clinic in North Carolina, my own tears pooled and threatened to flow. This mom believed with all her heart that her little boy had something to say and that he was capable of communicating and learning, but no one else believed it. She went to North Carolina in search of 'proof,' something that is so often required from kids with communication challenges, proof that Josh had something to offer.

The speech therapist confirmed that indeed her son was a bright little boy with communicative intent and the ability to learn. When given the right tools, a little guidance, some motivating activities and lots of time, her son, Josh 'proved' that his mom had been right all along, he really was 'in there.' She wasn't crazy after all.

When Josh engaged in activities with the speech therapist, I wanted to cheer. I felt like I was reliving those moments with Carter all over again - the doubts about his language progression, the wondering if there would ever be more to his communication than a few simple signs and gestures, it all came flooding back to me.

I get what it's like to have to 'prove' to others that your child has a lot to offer. I've experienced the feeling of being alone in the belief that there's a lot more going on in your child's head than he's able to demonstrate.

This movie illustrates the unfortunate truth, that kids with complex communication needs are held to a different standard than their typical peers. They continually have to prove themselves.

If only there were some way to relieve them of this burden of proof, to create greater acceptance and opportunity for them, to get others to believe in them like we, their parents do.

To those who doubt our kids, I leave you with this...

You will see things you'll never forget...if you just believe...

Our kids (and their parents) can move mountains with dreams!

Be sure to read Louise Kinross' blog post about Certain Proof on Bloom:
If You Don't Speak, You Don't Count, Families Find

*Those who subscribe to my blog by e-mail will have to click on the title to go directly into my blog to watch the movie trailer.

Saturday, 6 October 2012

The Child Who Never Grew

Here is another piece I wrote for the Waterloo Region Family Network (WRFN) blog a couple of years ago. Apologies to those of you who have already seen it. 

The Child Who Never Grew by Pearl S. Buck 2nd addition, Woodbine House 1992, 107 pages.

The first cry from my heart, when I knew that she would never be anything but a child, was the age-old cry that we all make before inevitable sorrow: “Why must this happen to me?”

So begins The Child Who Never Grew, a story written by the Pulitzer Prize and Nobel Prize winning author, Pearl S. Buck. The book is based on a magazine article Buck wrote for the May 1950 edition of Ladies Home Journal about raising her daughter, Carol who was born in 1920 with phenylketonuria (PKU). PKU is the inability to metabolize specific amino acids which can result in problems with brain function. As stated in the introduction, written by Martha M. Jablow, “Buck was the first prominent person to acknowledge publicly a child with mental retardation.”

The 2nd Edition of The Child Who Never Grew not only contains Buck’s first person narrative about life with her daughter, Carol, but it also contains unexpected wisdom in three additional sections of the book. The Foreword, the Introduction and the Afterword add significant history and detail that make this book complete.

The Foreword, written by James A. Michener provides a detailed account about Pearl S. Buck’s humanitarian work that involved the launch of “Welcome House, a meticulously run orphanage for unadoptable Asian-American children, most of them fathered by American G.I.s.” The American soldiers had served in Japan and Korea during World War II. Buck made it her personal mission to find homes for these babies.

After having read the original edition of The Child Who Never Grew, Michener felt he gained a better understanding about what spurred Buck on in her humanitarian work with Welcome House, “… I now understood the secret of Pearl Buck’s drive to save damaged children. Most were less crippled mentally than her daughter, but each was disadvantaged in her or his own way.”

The Introduction, written by Martha M. Jablow contains a historical time line that outlines the changing attitudes, beliefs and practises around people with developmental disabilities. The time line covered by Jablow stretches from a time in history where it was believed that mental disability was caused by evil spirits, to 1990 when legislation (Americans with Disabilities Act) was put in place to “bring down barriers and make workplaces more accessible to disabled individuals.” Jablow’s historical overview is detailed and informative.

The Story itself is timeless. It is a “moving portrayal of parents’ conflicting emotions as they come to terms with a child’s limitations.” When Buck, “writes from her heart about her personal pain and struggle with her daughter Carol’s condition, her voice is universal. She speaks to all parents who have travelled the same road – or who are just embarking on that journey as they discover that their child has some form of developmental delay.” (Jablow)

Buck explains that she writes the story because she wants her daughter’s life to “be of use in her generation.” The story is written in 1950, a time when attitudes concerning people with developmental disabilities are slowly starting to shift. Although Buck says her daughter has grown past a point where changing attitudes will make much difference to her, Buck wants her daughter’s story to in some way help this movement.

The Afterword is written by Janice C. Walsh, Carol’s sister. Janice feels that the title of the book is somewhat misleading. She explains that she was witness to Carol’s growth. She watched Carol “achieve her own potential”…at…”the Training School at Vineland”.

While Buck’s story tells of the emotional challenges experienced while parenting Carol, in the afterword we’re given a more detailed look at Carol’s personal interests and personality. Janice gives details of Carol’s accomplishments throughout her lifetime at the Training School in Vineland, New Jersey.

This book touched me on many different levels. Not only could I relate on an emotional level with what Pearl Buck went through as a parent, but I also gained a vast amount of knowledge about the history around mental retardation. The Child Who Never Grew could easily stand alone and while I found the story authentic and relatable I feel the book is enriched by the addition of the three sections described above.

I would definitely recommend this book to any parent raising a child with special needs. Buck’s emotional struggles are easily relatable. The book is rich with historical information that illustrates how far we’ve come as a society over the past few decades with regards to the acceptance of people with special needs. The Child Who Never Grew is an interesting read not to be missed.

Wednesday, 26 September 2012

Quotes About Communication

I love Rosemary Crossley's quote, "Not being able to speak is not the same as having nothing to say," so much so that I made it a permanent part of my blog page.

I did a search on the web to see if I could find other quotes related to communication. There are plenty out there but I chose only a few to share here. 

As I read the quotes, I was able to relate the message in each to Carter's situation. Here's the beginning of my collection of communication quotes:

"If we are strong, our strength will speak for itself. If we are weak, words will be of no help."  
--- John F. Kennedy

"To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others." --- Anthony Robbins

"I'm a great believer that any tool that enhances communication has profound effects in terms of how people can learn from each other, and how they can achieve the kind of freedoms that they're interested in." --- Bill Gates

“The most important thing in communication is to hear what isn't being said.” --- Peter Drucker

"The most basic of all human needs is the need to understand and be understood. The best way to understand people is to listen to them." --- Ralph Nichols

“The biggest mistake is believing there is one right way to listen, to talk, to have a conversation -- or a relationship.”--- Deborah Tannin

“Communication really is the essence of being a human being,”  --- Katya Hill 

"The basic building block of good communications is the feeling that every human being is unique and of value." --- unknown

And finally, my favourite...

“You can talk with someone for years, everyday, and still, it won't mean as much as what you can have when you sit in front of someone, not saying a word, yet you feel that person with your heart, you feel like you have known the person for forever.... connections are made with the heart, not the tongue.”  
--- C. JoyBell C

What does communication mean to you?

Sunday, 16 September 2012

Bentley's Biz: Fostering Freedom, The Story of One Amazing Foster Mom

Before I came to live with my boy, Carter, I lived with one awesome lady. Her name is, Elizabeth and she taught me everything I know.

She took me into her home and raised me to be a calm and obedient pup so that I could use my skills to help out a child with a disability. That child ended up being my buddy, Carter.  I've been his service dog for just about two years now. But I couldn't have done it without my foster mom, Elizabeth.

Click the link below to read a doggone good tail...er, tale about Elizabeth as a foster puppy raiser. You'll learn all about what a paws-i-tive experience raising a service dog can be. Now, go on, get reading. Arf!

For more of Bentley's Biz click the links below:

Thursday, 13 September 2012

The Little Things Mean So Much

'Diversity in abilities forces us to define our own “normal” and allows us to choose what we celebrate.' Anchel Krishna  Today's Parent

I made note of a few language related things that Carter has demonstrated over the past few months. These are things that made me smile, laugh, or say, 'Yes!' They are things that made me realize how far Carter has come with his communication skills, both receptively and expressively.

Take a look...

Being considerate

Taylor came to the dinner table one night, after everyone else. We'd already said grace and had begun eating. As she sat down she apologized, "Sorry I missed grace," she said. Carter responded by pushing the button on his talker that was programmed with our version of grace, 'For our daily food, we are thankful. Amen.' We laughed and thanked him for the recap. He made sure that grace was said for Taylor, too.

Potty humour

Kids would not be kids if they didn't go through the potty humour stage. Jack and Taylor have been laughing, for what seems like years now, about the word 'underwear' and all things related. Carter is right there with them. He's found the 'underwear' button on his talker and just loves making his brother and sister laugh by repeatedly pairing underwear with someone's name.

Observing and commenting

Back in the heat of the summer we were sitting at the table eating lunch. Carter was doing his usual thing with his talker which is to converse a bit with us and then divert to exploring and playing around with his device (this basically consists of him randomly hitting buttons so that what he is saying doesn't make much sense - much like a toddler babbling and experimenting with new sounds and words).

So, when I heard him say mountain I didn't think much of it - probably just more exploration on his part. But then he paired mountain with beer and spoke both words together. That got my attention. Mountain Beer? Sounds cold and clear, like great tasting beer. I looked over and there was Carter pointing to my husband's can of Coor's Light. But of course, Mountain Beer!

note the mtn graphic above the label

Pushing the limits to get a reaction

Carter has the names of several people programmed into his talker. For my husband and I he has Mom and Dad (of course). I've added and deleted people's names over time as needed; classmates move away, teachers change, etc. Carter recently got a new therapist at school whose name is Stacey, so I programmed her name into his device.

One night during dinner, Jack and Taylor were talking about going for a swim after they finished eating. That's when Carter interjected with, 'Swimming Stacey.' I was pretty sure he meant me but I wanted to make sure he wasn't referring to his therapist - perhaps they'd talked about swimming at school. I asked him, 'Do you mean Stacey at school?' A big grin spread across his face and he pointed directly at me. He laughed and laughed and I couldn't help but laugh, too.

Jack and Taylor play around with calling my husband and I by our first names and it started a while back. But, this was the first opportunity Carter had to try it out and he loved it, giggling away - just like my other two. It was awesome.

Although some days it seems that Carter's language development and competency with his talker is advancing at a painstaking rate, he is definitely progressing - and it's often when I stop to take note of the little things that I recognize this.

Carter has demonstrated that he can show consideration toward others, he can make observations, he can get a reaction, and he can be a big goofball. These are the things that most parents take for granted with their children. 

One of the greatest things I've learned from Carter is not to take anything for granted and to appreciate and be grateful for the little things.

I'm not alone in this feeling. Take a look at some of the milestones my fellow bloggers are celebrating with their kids:

Max Walks Up the Stairs for the First Time


Thursday, 6 September 2012

Sign Me Up

Before I started this blog, I did some writing for the Waterloo Region Family Network. Here's something I posted on the WRFN blog a couple of years ago when Carter was seven. The article was actually written when Carter was five. It was an assignment for a freelance writing course that I took. It tells of another form of augmentative communication that Carter used before he got his talker.

Parents would not be human if they, like everyone else in the world, didn’t follow new trends, especially trends that make life easier. You don’t have to search too hard to find the latest fads in baby gear and accessories. Products in the world of babies and toddlers change so drastically that it is often hard to keep up. Strollers become more compact and car seats become safer, with seat belt systems more elaborate than last year’s model. As the world changes, so too do the tools required for the job of parenting.

A current trend in the world of new parents and tots is to use sign language to communicate.  This consists of mom and dad learning a few basic signs likes more, all done, mom, dad, drinkcookie, etc. When mom and dad model these signs for their little ones, babies imitate what they see, enabling them to communicate with their parents long before their vocal chords are mature enough for speech.


Parents of a child with special needs learn to sign out of necessity rather than choice because often along with other challenges, their child has a delay in speech and language. Due to the recent trend of signing with babies, there are a variety of resources available to purchase or borrow from local libraries that assist with the learning of simple, relevant signs.

My husband and I anticipated speech difficulties with our son, Carter because he was born with a cleft palate. However, the cleft palate did not explain why our son was not developing speech and language skills at an age appropriate rate. Over time, we made a gradual discovery that our son has global developmental delay.

Carter’s signing vocabulary grew over time.  We started by teaching him food items and then moved on to his favourite toys. We have since taught him signs to label specific items of clothing as well as colours.

Initially a child must be motivated by an item in order to learn to sign for it. It was no surprise to us that Carter’s first signed word was cookie. Although motivated to copy the hand motion that we showed him in order to be rewarded with a cookie, the process was painstaking initially, due to the amount of demonstrations, and repetitions needed before he finally caught on to what was expected of him. In the end it was very rewarding for both Carter and me. Carter got what he wanted because he now had a way to express himself and I was able to provide for him at his request.

It is often very easy to give a child what they want if they point or motion toward the item.  Parents fall into the habit of giving their child what they want before they even ask for it. It was helpful to create opportunities to teach Carter new signs by hiding an item or putting it out of reach so that he was forced to request it.

Carter’s fine motor skills are delayed which created some challenges around certain signs, as some hand motions were too complicated for him. When this occurred, we would revise the sign to make it more manageable for Carter. We also created signs so that he had a way to name certain family members, as well as friends.

At [seven] years of age, our son interacts with a variety of people often away from home.  Unfortunately, it is not feasible for us, as parents, to expect everyone that Carter sees on a regular basis, to learn sign language.  It has been a very beneficial method of communication that has bridged a gap between Carter, his family and his therapists.  However, we’ve recently made the transition to the next level of communication with Carter, a voice output device.  Unlike baby sign, a portable, talking computer device is not all that trendy, but just as strollers and car seats have evolved, so too must my son’s method of communication.

So much has changed in the world of technology over the last few years. We are now in the golden age of the iPad with AAC apps being developed at a rapid pace. If Carter had been born just a few years later, things may have been quite different. I may or may not have gone the sign language route with him. Nevertheless, I'm grateful that he has a back-up method of communication for when his talker is unavailable to him and I'm thrilled that we live in the age that we do because so many high-tech options have become more readily available to those who are non-verbal.

Thursday, 30 August 2012

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!"