#8 Night Walkin' not Sleep Talkin'

I came across a unique and quirky blog that covers the topic I had chosen to write about for today's blog post. The blog is called Sleep Talkin' Man; my blog post topic: sleep talking.

The point I was going to make in this post was that when you can't talk, you don't talk in your sleep. Carter makes up for that by walking instead of talking. He's not actually sleep walking. He wakes up in the middle of the night and strolls around checking on everyone (mostly me).

After reading a few posts on the Sleep Talkin' Man blog, I'm thinking about setting Carter's talker on his bedside table and installing a hidden camera just to see what comes of it. Maybe there's more to this night walking business then I'm aware of.

If Carter were to grab his talker and say something like, "Zombie rugby could be a lot better, but they keep passing their arms.", or, "Elephants in thongs are not something you see everyday. Enjoy it.", and if I were to blog about it, I'd still have no explanation as to why he wanders around in the dead of night, but my blog would get a lot more followers. I know this because it's (sort of) been done already. The zombie, elephant statements are some examples of nighttime revelations made by the Sleep Talkin' Man. 

Every night Sleep Talkin' Man's wife, Karen, takes a voice activated digital recorder to bed with her. Then every morning she posts the audio of her husband's nightly outbursts on her blog. The blog has been around since 2009 and her simple idea has lead to a huge following, and a book, and several talk show appearances.

I'm not optimistic that blogging about the exact opposite of Sleep Talkin' Man's content (not being able to talk, let alone talk in your sleep) will mean that I see the same results Karen Slavick-Lennard did, but a girl can dream (if she can catch enough zzzs when not being woken by her non-sleep-talker-night-walker son, that is).

Not being able to talk means no sleep-talking, but there's more than one way to disrupt a sleeping household.

What have you heard through the night lately?

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.

#2 Talking With Your Mouth Full

Jack and Taylor need regular reminders to finish what's in their mouth before speaking. Let's face it, all of us do every now and again (seafood is great, but 'see' food isn't). When we remind the kids of this rule we often add that Carter is the only one who doesn't have to worry about it. 

Carter 'talks' with his mouth full all the time. He chomps down his food while asking questions and making comments during meals. 

His talker has some useful features like pre-programmed phrases suitable for school aged kids, a variety of synthesized childrens' voices; all in the name of creating a more authentic communication experience. But, nowhere is there an option to change the voice so that it sounds like the user is talking with a mouthful (now that would make for an authentic communication experience).

We've noticed lately that Carter has been overdoing things a bit with this advantage of his, to literally 'talk with his mouth full.' I think when you hear this, you'll agree that he's really pushing the envelope. We delegate the job of dinner time  grace to Carter. It's a perfect way for him to participate at mealtime and he's proud to take on the task. 

When we sit down for dinner, Carter knows what he's to do. He presses a couple of buttons, gains access to his mealtime words, and then hits the button programmed for grace. And then? My presumptuous  little man picks up his fork and starts in on the first bite of his meal while his talker reels off grace. 

Not being able to talk means not having to worry about talking with your mouth full. It also means saying grace while, at the same time, getting started on your meal.

Do you ever need to be reminded not to talk with your mouth full?

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 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

Grace

Call Me Maybe

Repaired talker and the loaner.

I've been thinking about the fact that I never wrote a blog post with an update about the repair of Carter's talker.

(It got dropped on the floor in April and needed to be repaired. If you missed my post about it you can read it here).

I think I left off with a short update which told of how the Ontario technician could not fix the talker so it was to be shipped to the U.S. for repair. Three weeks later, the talker had not arrived at the U.S. company. I was less than impressed (read more about that here).

Things could have been very different if someone had shown some common courtesy and called with an update on the status of the repair. Unfortunately, that's not what happened.

I ended up writing a letter to the president of the company here in Canada to let him know that I was not pleased with the service we received.

I found out later that Carter's talker was shipped from Ontario to B.C., and then to Ohio. I'm struggling to understand why they would ship it out west instead of sending it directly to the U.S. Probably some company policy (one that makes no sense and should be changed) but it explains where Carter's talker was for over two weeks -- in transit.

Amazing that once I told the U.S. company how long we'd been without the device, they were able to fix it and get it back to us in two days.

I mailed the letter at the end of May. It's almost mid-July and I haven't received a response. It doesn't look like I'm going to get one at this point. Frustrating!

But, enough about my anger and disappointment. I've decided to take a different approach.

Carly Rae Jeppson has a popular song out right now called, Call Me Maybe -- if you haven't heard it, click the link and have a listen. I revised the lyrics to her song. My lyrics tell the story of what happened with the repair of Carter's talker.

 Call Me Maybe

I sent C's talker that fell.

Floors and talkers do not gel.

Up north repaired not so well

It will be shipped away.

Must be sent to the U.S.

I called to find that out, yes,

He told me it would be sent

I got no more info.

Your guy was sending

C's talker for mending

You sent one for lending

What's taking so long now, buddy?

How 'bout an update, 'cause this is crazy

Where's my son's talker? Um, call me maybe?

I know that you know, my name is Stacey

You have my number. So call me maybe?

How 'bout an update, I'm going crazy

Where's my son's talker? Um, call me, maybe?

The US company, looked for it - holy! 

Has not arrived yet, where could the thing be?

You sent it 'cross the country

No one bothered to tell me

Three weeks for delivery

And still no one told me

I call and find out myself

They put forth effort and help

The talker's here in two days

With no thanks to you.

Your service needs some

Improvement and then some

Mad mom, who you'll hear from

Who you think you deal with buddy?

How 'bout a response, to my long letter?

You have my address. You should know better.

It's hard to know now, why you'd ignore me.

Customer service, please why don't you see?

I can't believe this, this is crazy.

Your service seems a little hazy.

The US company, tried to make up

For your big blunders, two months is too much.

Carter relies on his talker.

We missed it so bad

We missed it so bad

We missed it so so bad.

I was the crazy mom stalker.

We missed it so bad

And you should know that

We missed it so so bad.

I called and called you, then wrote a letter

Maybe you don't care to make things better.

Your products change lives, for those that use them,
Respect your clients, with communication

It's hard to know now, why you'd ignore me.

Customer service? Just reach out - maybe?

Carter relies on his talker.

We missed it so bad

We missed it so bad

We missed it so so bad.

I was the crazy mom stalker.

We missed it so bad

And you should know that

Some  contact, maybe???

So, what do you think? Should I contact Carly Rae Jeppson and see if she'll sing her song (with my lyrics) to the company president as a follow-up to my letter? Better yet, maybe I'll sing it to him :-)

Hello Summer

Summer is here and that means trying to keep the kids busy.

We will have a holiday at a rental cottage up north in a couple of weeks. Otherwise I'm relying on an old standby to keep the kids occupied and out of each others' (and my) hair, for a few weeks out of this long summer. The old standby? Day camps!

Today was the first day Jack and Taylor attended day camp. I wanted to make sure that everything ran smoothly this morning so that I could get everyone where they needed to be. As we went about our morning routine I recognized that somehow I felt different from previous summers. Then I realized why.

My stress level was virtually normal. Yes, I was concerned about getting everyone out the door and dropped off on time but that was it, that was the only stressor I had.

And that's because...

Carter is not attending day camps this summer! I am free of that dreaded feeling I have experienced in the past when dropping him off to be in the care of someone else.

That feeling is much like the one I had with each of my children on their first day of kindergarten.....but multiplied by a thousand.

To entrust someone else with your child is no small thing. When your child is non-verbal? It's a whole different ball game.

Before Carter had his talker, I was one of only a handful of people who understood his form of communication (an adapted form of sign language and various different gestures).

So, I would supply Carter's camp support worker with an 'All About Me' sheet and a duo tang full of pictures of Carter signing different things (drink, eat, help, etc.). His support worker would then 'study' the information in preparation for her time at camp with Carter. But how can a support worker learn 'All About Carter' from a few sheets of paper and some commentary from his mother? Not possible. Which meant that Carter's day camp experiences weren't always positive.

Carter would never run to see me at the end of camp with stories about activities he'd done or who his new friends were. I was at the mercy of hearing how his day was from his support worker or a camp counsellor or sometimes no one at all if at the end of the day everyone was too busy to talk to me. Hearing that my son's day was 'fine' and that 'he had a lot of fun' was never very satisfying for me. But sometimes, as with my other children, that's all the information I got. The biggest difference being that if asked, my other children would share more details about their day. Carter could not.

Carter's communication has always been the number one challenge when entrusting someone else with his care. So, this year I'm thankful to be without all that worry. No need to research camps and figure out which ones will best suit Carter's interests. No need to find a suitable support worker to attend camp with him. And no nervous stomach on mornings when I'm dropping the kids off.

Instead, I'm feeling at ease because I'm dropping Carter off at a place he is totally familiar with. And everyone there is totally familiar with him. I'm dropping him off at his school three days a week. He'll continue with a familiar routine. He'll continue to learn, and to master new skills in an environment where I don't have to explain and re-explain his quirks and idiosyncrasies, and where I don't have to worry about whether his communication will be understood (in fact, they'll be working to improve Carter's communication skills with his talker - yes!).

Don't fret. Carter will still be having lots of fun this summer. And he will actually be attending camp -- AAC camp! He went last year and had a blast.

Stay tuned for a blog update in August. I'll be sure and share about his AAC camp experience.

Barometer of Emotions

I like to think that I'm an even keeled kind of person -- someone who goes with the flow and takes things in stride. Lately though, specific things have been setting me off.

Below: some emotions...and their triggers...

Sadness
Thursday morning I dropped Carter off at school as usual. Some mornings are busier (with other students around) than others. On this particular day there was another boy arriving with his mom right when Carter and I arrived. I said goodbye to Carter, but he wasn't paying attention so his therapist told him to, 'say goodbye to mom'. The other boy thought she was talking to him and without hesitation he called out, 'Goodbye, Mom'.

symbolstix.n2y.com

Carter doesn't actually say goodbye. Instead he waves. Usually I'm good with that, but that particular morning, hearing the other boy put voice to something so simple, something my boy won't likely ever say to me...well, it got to me...and my reaction caught me off guard. My eyelids felt all pin prickly and that sensation spread quickly to the back of my throat where a small knot formed and took up residence until I was back in my car and moving on with my day. Sadness.

Rage
We are still without Carter's talker . At least 3 weeks have passed since we were told it needed to be shipped to the U.S. to be fixed. When I got in touch with the U.S. manufacturer to follow up on things -- as in, what exactly is wrong with the device and when will we be getting it back -- the response I received infuriated me.

symbolstix.n2y.com

The e-mail from a technician indicated that they had not yet received Carter's device. That's right...you read correctly! It's been three weeks since I was told that the device needed to be shipped to the U.S. to be fixed and it has not even arrived there yet.

The e-mail went on to tell me that the order was dated May 2, 2012.

You're telling me it wasn't even shipped until May 2nd? Where has it been all this time? Sitting on a shelf? This is not just some toy or computer used for pleasure! This is a child's voice we're talking about!

You can imagine my rage. And if you can't, here's a suggestion: try duct taping your mouth shut for a day (never mind three weeks to a month) and see how that helps bring some clarity to our situation.

I was so distraught I promptly clicked my mouse to forward a ranting, raging e-mail to my husband to share with him the update I'd just received. Rage.

Awkward and apologetic
Apparently in my rage (they say it can be blinding) I actually hit the reply arrow instead of the forward arrow and my ranting, raging message was sent to the technician at the company, not to my DH (darling husband).

symbolstix.n2y.com

I won't lie. It wasn't pretty. There were choice words used and I'm not proud (actually feeling somewhat embarrassed) that they were sent to some poor technician that probably didn't know what hit him. But, the customer service we've received thus far is inexcusable -- which I explained in my follow-up apology e-mail to said technician. Awkward and apologetic.

Content and appreciated
Now we are starting a new week and the first day of that week is Mother's day. I am feeling that being a mother is no picnic. But, I am also feeling appreciated and I am feeling loved. Content and appreciated.

symbolstix.n2y.com

I wonder what readings will show up on the barometer of emotions this week.

© 2003-2012 n2y, Inc. © Symbolstix, LLC used with permission.

Missing My Talker

We're on day 21 of being without Carter's talker. As each day passes I appreciate more and more how important the device has become to Carter and the role it has played in helping him to communicate effectively.

Unfortunately, the talker got dropped on the floor at school several weeks ago and ever since then the battery won't charge. When plugged in it will function but it will not charge. Carter used it for a little while, powering it up with an extension cord, but eventually we had to send it off to be repaired. My active boy needs his device to be portable and being limited by an extension cord was not ideal.

This is the first problem we've encountered with Carter's talker since he got it just over a year ago. What do you do with a high tech voice output device when it stops working? Well, the device was manufactured in the U.S. and the Canadian distributor is located in British Columbia so we were surprised to find out that it would go to northern Ontario for repair. The 'local' technician worked on it to no avail and last week it was shipped south of the border, back to the manufacturer.

Meanwhile, here at home...Carter is back to relying on sign language to express himself. The more he signs, the more I am reminded of how hugely limiting sign language is for him. He has so much he wants to contribute but can't because he doesn't have enough language without his talker. He has very few verbs in his sign language repertoire so he mostly ends up labelling everything around him by name or by colour (truck...dog...red...Mom...etc).

I play my role as Detective Mom and do my best to figure out what he's trying to say and then I fill in the blanks. He wants his thoughts articulated so I provide a running commentary of his repetitive signing. I become his translator, and his voice.        

It takes us back to a time before Carter had his talker. He would string two or three signs together and maybe the odd gesture and the rest was intuition on my part. I would watch Carter's signs and gestures, study the situation and then do my best to convey what I thought was Carter's message. I was probably about 90% accurate most of the time which was both good and bad. Good because Carter had someone he could rely on to figure out his wants and needs. Bad because I couldn't be with him all the time. His communication skills needed to evolve.

Hence the talker. With his talker Carter is able to put several words together and express himself in a more meaningful way. He comments on things, he makes observations, he asks questions, he even tells jokes. The jokes are preprogrammed into his talker and he doesn't always understand the punchline but he loves it when he can make someone laugh -- in fact, he can't get enough of that. He can now engage and connect with others which is something he so badly wanted, and needed to do.

I don't want to paint it as a perfect picture. It's not like Carter speaks like a typical 8 year old boy with the exception that his voice comes from a computer box. He is still learning the conventions of language -- learning how to put it all together. He doesn't form complete sentences and he often mixes up the order in which the words should go. He leaves a lot of words out of his utterances so some interpreting is still necessary.

Add to that the fact that Carter can be quite shy. Depending on the situation and who he's with, he may choose not to use his talker. There are still some challenges to overcome but we're miles ahead of where we were without the device.

We have watched Carter's excitement level grow in direct correlation with the development of his language skills. His talker has allowed him to demonstrate the complexity of his thoughts and he seems pleased to finally be able to do more than just label things in his environment. He literally loves his talker (he actually hugs and kisses the darn thing!).

We're waiting for a 'loaner' device to be delivered from the distributor out west and I must admit, I'm getting a bit impatient with the wait. I'm ready to go back to being Carter's communication partner instead of his translator. And Carter? Well, good old Carter is usually fairly content with whatever is going on but I'm told he's showing signs of frustration at school. He misses his talker too.