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 

These Days

These days being a mom feels like...
stealing a kiss and a hug whenever Carter is near; his legs so long now, bringing him to a height where his cheek meets my mouth when he’s close. I steal those kisses only to be given a sloppy one in return. But I’ll try and savour them, even though he’ll always be my loving guy and, thankfully, won’t outgrow showing his mom his love. He’ll keep his playfulness too, punching me in the car when he sees (or sometimes doesn’t see) a ‘punch buggy’. His knuckles digging a sharp pain into my biceps, but being rubbed out by his open hand when I mutter, ‘ow’.

These days being a mom smells like...

hockey. The stink of hockey hair from a smelly helmet, hockey hands from sweat soaked gloves, hockey equipment draped in the bathroom downstairs, oozing out the stench of my boy giving it his all on the ice. His determination, his drive, his dedication to the sport he loves, drips from him in a sweaty mess. But when he’s showered after his practises and games, the masculine smell of his shampoo reminds me that he’s on the verge of becoming a man and I want to slow down time and keep him close, keep him little, remember back to when I had to go into the dressing room to tie his skates and help him with his equipment.

These days being a mom sounds like...

an excited, loud girl on the end of a long distance line. A routine conversation consisting of mostly the same information, the same questions, the same responses each night we chat. But the anticipation of speaking and connecting to home is a must, even if it is the same every time.

These days (and all the days of being a mom)...
have music in them; dancing with the kids when they were babies and then toddlers, holding them in my arms and blasting the music. Now, I hold Carter’s hands and dance with him in the kitchen in an awkward effort to reenact our dances of years gone by. 
Carter's got the music in him, his shoulders shimmy when a funky beat plays on the car radio. His brother belts out the words in his off tune voice that makes my inner musician cringe. That voice drowns out his sister who carries the tune beautifully and who knows the actual words. As long as we’re sharing music, that's what's important. It is our connection. It is our outlet. It brings laughter and silliness. We sing like nobody’s listening and dance like nobody’s watching.

These days being a mom means...
facing constant challenges
and embracing ongoing changes.

These days being a mom means...
utilizing my fierce determination to get for my kids what they need most.

These days being a mom means...
celebrating small victories
and accepting things as they are.


Written Oct.2/17

My Communication Journey

It's funny how life unfolds depending on the hand you're dealt. Carter has influenced my life path tremendously. He has take me on a unique and exceptional journey. Having a son with a disability has opened the door to a whole new world of people and organizations for me. Because of that, I've had some pretty interesting opportunities. To name a few, I've  volunteered with the WR Family Network, the Abilities Centre and most recently with the Aphasia Centre. It's not likely I would've gotten involved with any of these organizations had it not been for Carter.

Through Carter, I also discovered my passion for communication. I believe very strongly that communication is a basic human right. Some of us need help getting our message across, but we all have the right to be heard.

Several weeks ago, I sat down at my computer to investigate what it would take to become a speech therapist. I mean, why not? I'm immersed in the world of AAC thanks to Carter, and as a result I've attended several workshops and learned a ton of stuff about AAC and language development. Maybe that's the career path I was meant to take. 

But, after quite a bit of research and personal reflection, I decided that as passionate as I am about communication, being a speech therapist isn't really for me. Instead, I found my research turning toward how language is learned. That lead me to several websites for TESL programs (teaching English as a second language). Reading about that got me excited. It's an offshoot of my teaching qualifications and it's related to communication, but it's separate and very different from what I experience with Carter. 

I started volunteering with the LINC/ESL continuing education program three weeks ago.  Once a week I help out in an adult ESL classroom for two hours in the morning. After lunch I wheel the library cart (full of levelled reading books) to three different classrooms, stopping for 40 minutes in each to read with the adult students and support them in learning English.

Under one roof, I have been exposed to people from across the globe; places like; Vietnam; Guinea; Libya; Saudi Arabia; Afghanistan; Hungary; Poland; Ukraine; Congo; Iran; Honduras; to name just a few. I find it fascinating.

I've been immersed in the world of special needs since Carter was born. As a result I've met some amazing people and had some very unique experiences. I'm grateful for those experiences and credit them somewhat for my arrival back to the classroom with a renewed passion and interest. 

Although my classroom time is much different than when I first started teaching, I'm enjoying my new volunteer position. How things unfold from here remains to be seen, but the research I'm doing these days is around what it will take to get my TESL qualifications.

I'll be sure to keep you posted so stay tuned! 

#16 A Mother Knows the Words Her Child Cannot Say (if not, she becomes the Columbo of Communication)

Well, not literally, but a mother's intuition sure comes in handy when trying to figure out what 'her child cannot say'. Before Carter got his talker I was the the Columbo of communication, the Magnum P.I. of his wants and needs, piecing together what he was trying to communicate through his use of gestures, sign language and facial expressions. 

Even now, I play the role of Detective Mom whenever Carter can't get his message across with his talker. I often need to look for clues in the surrounding environment when trying to figure out what he's trying to communicate. 

You can read more about being a detective mom here and you can read about the harsh reminder of what it's like to be without Carter's talker here.

 

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.

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.

Am I Going to Keep Mourning What Isn't?

I've been keeping things fairly light here. I've stayed away from blogging about anything too deep or emotional. A specific post that I read recently, on a blog that I follow, got me thinking. The post was from, The Fragile X Files and it was entitled, Comparing Apples to Apples. The post is about one of the inevitable pitfalls of parenting - comparing your kids to other kids.

When it comes to children with special needs, the act of comparing is a slippery slope. The adage that children develop at their own pace is no longer a relevant excuse for missed milestones,

"...there's a standard by which children are expected to have reached certain milestones. How else would they come up with what is standard and typical, without comparing? How else could they determine who is developmentally delayed?"

The author speaks of comparing her twin boys (both of whom have Fragile X Syndrome) to typical children:

"...as a parent of children with developmental delays for several years now, you'd think I'd be better at not comparing them to other kids..."

She goes on to say that comparing her boys to children within the Fragile X community is often more challenging for her because it means that she is comparing 'apples to apples'. Those more severely affected by the syndrome (like her boys) stand out from those who are only mildly affected.

After reading the post, I decided to leave a comment for her. Here is part of what I said:

My son doesn't have a diagnosis - other than the catchall ' global developmental delay.' I spend my time wishing I could find other kids like him so that I could compare apples to apples. He is non-verbal and it's hard to compare him to kids that can verbalize their wants and needs, their likes and dislikes.

I could have written more, but instead of filling the comment box, I decided to write my thoughts here.

Like The Fragile X Files author, I don't spend a lot of time comparing my son to typical eight year old boys. Carter is so far removed from where he should be developmentally that I try hard not to go there too often, and when I do, it's never for for very long. 

I have, on several occasions, compared him to other children with special needs though. I even wrote about it a few years ago on Bloom. 

Back then I was comparing him to the kids in his horseback riding group. Lately, I've been comparing him to his teammates on his Challenge League soccer team.

I compare and I wonder, if I could snap my fingers and magically changes things, would I trade Carter's inability to speak for a different disability? Would I rather he be challenged with a physical disability but be able to call my name? Would I rather he have behaviour issues but function at a higher level cognitively?

I don't have the answers to those questions. Nor do I need to come up with answers, because I won't ever be able to magically change the fact that my son is non-verbal and has a cognitive disability. 

In the end, it comes back to a question the Fragile X Files author asks, All through his life, am I going to keep mourning what isn't? 

Someone else left a comment in response to her post,

Mourn, move on, enjoy the positive moments, then cycle through it again.

Sometimes that's all we can do.

I Marvel at Your Cooking

I had to laugh the other day when my son, Jack told me that he marvels at my cooking. What a compliment! Especially when more often than not I feel like a novice in the kitchen.


I'm certain the term, 'marvel' comes from Jack's teacher. I've heard several things from my seven year old that haven't come from home. It makes me marvel at all that he takes in, remembers, and repeats in relevant, meaningful ways.


In the spirit of Jack's (or rather Jack's teacher's) new phrase I thought I would list some of the things that I marvel at with regards to my three kids.


 I marvel at...

...how different each of my children are.

I marvel at...

...the many things my kids have to offer.

Taylor reminds me daily that being less structured and having a free-spirit can spice things up. There's never a dull moment with Taylor around!

Jack's sense of humour often lightens the mood when things get tense. He keeps everyone smiling - or at least he tries.

And Carter, well...Carter has opened up a whole new world for me. One that includes many things I would not have experienced had he not been born with a developmental disability. He has made me appreciate the little things that we so often take for granted.

I marvel at...

...Carter's easy-going disposition....his patience and minimal frustration in light of the fact that he is non-verbal. I can't imagine many others who would be as agreeable if they couldn't plainly convey their wants and needs. These qualities were evident during our recent ski trip to Vermont.

I marvel at...

...Jack's thoughtfulness and sensitivity. A few weeks back he came home from school and told me about a movie he'd seen. There was a boy in the movie that had lost his legs and was in a wheelchair. Jack was quite emotional and very concerned about the boy. Full of questions, Jack needed reassurance that the boy would be okay without legs. It took a lengthy discussion before the subject came to a close and even then Jack left the conversation feeling distressed that some people have to struggle in life to overcome undeserved challenges. Carter is a lucky guy to have such a sensitive brother.

And finally...

I marvel at...

...Taylor's pure exhilaration over things that she loves. I marvel at her exuberance and her lack of inhibitions.
We moved to the greater Toronto area recently and are now living in an area much more culturally diverse than where we used to live.
Taylor, Jack and I were approaching the check-out with our groceries one afternoon when I heard my daughter exclaim, "Jack! Look! A genie!" (keep in mind that at five years old Taylor is very much into the world of fairy tales and princesses - especially Disney princesses). When she saw a gentleman wearing a turban she equated him to a character she was familiar with, not to someone of a new culture that she knew nothing about. She was so excited that she blurted out the first thing that entered her mind.
I must admit, with Taylor some days it isn't so much marvelling as it is 'shushing'. After the shushing comes damage control. Thankfully the gentleman did not hear what Taylor said and I was able to quietly rein her in until we got to the car where I explained that genies are found in fairy tales, not at the local grocery store.


Thanks, kids! Every day I marvel at your uniqueness.

Detective Mom

As mom to a non-verbal child, I feel I have a sixth sense about what my eight year old son, Carter is thinking, feeling, wanting or needing. I don't always get it right, especially when he is sick or hurt, which is something that distresses me. That's when my 'detective skills' kick in to high gear. I look for clues and try to interpret what is going on with Carter as best as I can.

Carter is becoming more competent with his voice output device (Vantage Lite) but in some situations he is not able to have his talker with him. And he still has some learning to do in order for him to be fully able to communicate his needs with the device. He still relies on sign language and gestures to help him convey his message.


It's not easy stepping into new situations where someone unfamiliar will be in charge of Carter. I do my best to provide information in an 'All About Me' document that explains, as much as possible, the 'ins and outs' of Carter and some of his quirks and idiosyncrasies. It doesn't always make up for Carter's inability to fully express himself.

As I look back on our family's recent ski trip to Vermont, I find myself reflecting on Carter's communication skills and how they affected his experience.

I've written below what I, as 'Mom detective' could imagine was the running dialogue in Carter's head throughout his 3 day ski experience.

Day 1

Cool! We're going skiing. I love skiing! But I hate the the heavy squeezing feeling in my feet when my ski boots are on...same goes for the helmet. I guess I'm so excited I forgot to freak out this time when Dad helped me get my gear on.

Bye, Mom. Bye, Dad. See you guys after my ski lesson.

Wow, it's hot in here. I wonder why we're still inside the chalet. Mom took a long time talking to my instructor and telling her all about me but I thought we'd go outside after she left. I wish someone would help me take off some of my gear. I'm cooking.

Hmmmm, I don't feel so good. [YAWN] I'm tired from that long car ride yesterday and from not sleeping very well in that new, weird bed. Man, I am sooo hot.

Yuck. There goes my breakfast. Now my jacket's a mess. Well, that got everyone's attention. At least they're cleaning me up. And now some lady is on the phone. I think she's talking to Mom.

Oh, there's Dad. I guess we're leaving. Well, at least we're going outside where it's cooler.

Aaaaah, back in the room. Mom looks worried. She's saying I look pasty. 

Thanks for turning on the TV so I can relax, Mom!

I love this show! I love it so much I'm going to jump up and down! It's so nice to be out of all that ski gear.

Some toast? Sounds good, Mom. My stomach feels fine now.

That afternoon:

Ski gear again? Well, okay but I do NOT want to go back and sit in the chalet again.

YES!!! Dad just said they don't have anyone to give me my lesson for another hour so he's going to take me on some runs with Mom!

Ahhh...I love the chair lift. So much to look at!

Now this is what I call skiing! Dad does all the work and I go along for the ride. Riding between Dad's legs is definitely the way to go. Love feeling the wind in my face!!

I wonder why we're going over to the small hill. 

Oh, this is my lesson.

Well, this is okay, I guess. Riding the magic carpet is funny sometimes. Makes me laugh.

Sheesh...I'm tired. I think I'm pretty much done for the day. I wonder how I can get the message across that I've had enough. If I hold my stomach she'll probably make a big fuss like she did this morning when I threw up.

Yep...she's pulling out her cell phone -- must be calling Mom and Dad. Mission accomplished.

Day 2

Yahoo!! Skiing with Jack and Taylor -- I can't wait!

What? Where are we going? Why aren't we going with Jack and Taylor?

No way! I want to be with them. The little hill? Forget it. I'm not putting on my skis. I'm not going on that baby hill.

Why can't everyone just get outta my face. I'm so sick of hearing that 'It's okay'. It's not okay. I want to be with my brother and sister! This sucks. It's not fair.

Who's this now? A new instructor?Well, at least she's quiet and not trying to convince me to do something I don't want to do. Looks like she'd be willing to wait for me all day.

Fine, I'll put on my skis but I'm not happy about it. Mom and Dad are watching so there's still a chance they might get me outta here if I keep being difficult.

What? They're leaving? 

Guess that didn't work. 

Fine, I'll go down the hill with this new lady. She seems okay.

Cool! I did it and now she's going to take me on the chairlift to a bigger hill!

Yes! I'm doing it! Look at me! Look at me! This is so much fun! 

Day 3

Yes! I'm with my awesome instructor from yesterday! I can't wait to get going.

See ya, Mom and Dad!

This is awesome! I love skiing! 

There certainly would have been less guess work had things started off differently that first day when we dropped Carter off at the chalet for his ski lesson. After he was sick to his stomach, we brought him back to our room and I did my best to figure out what was going on with him. I watched him for a few hours and felt 95% sure that he didn't lose his breakfast because he was coming down with a nasty bug. Overtired, overheated, and a lot of excitement is what I figured was the cause. But as I mentioned earlier, I don't always get it right. And the 5% of lingering doubt really weighed on me.

Thankfully Carter proved me right, quashing my worries over whether he should carry on with his lessons. He was a happy boy once things got rolling with his new instructor.

You can see by the smile on his face that he was very proud to be out on the slopes doing his thing!