Monday, 28 January 2013

Carter's Story Part 3: More Waiting

Part 1        Part 2

Carter with the Vantage device borrowed from Aroga.
Armed with my research about Minspeak and the Vantage Lite voice output device, I got in touch with Aroga, Canada's distributor for Prentke Romich products. They shipped us a Vantage device for Carter to try out and they treated me to a webinar to explain the ins and outs of the device (as well as two other devices that were comparable in functioning).

Shortly after receiving the Vantage device and seeing Carter's success in using it, I requested that the speech language pathologist (that had done Carter's AAC evaluation) write up a prescription for a Vantage Lite for Carter. With the SLP's prescription, we would be eligible for funding through Ontario's Assistive Devices Program (ADP). The funding would cover 75% of the monthly fee to lease the high tech device.

The SLP informed me that the Vantage Lite had recently been recommended for approval by ADP but it had not yet been approved and was not on the list of devices available for lease.

Back to researching. I needed more information, more details about how the Assistive Devices Program worked and more specifically, how long it would take for a device to be approved.

I called the ADP office to find out about the status of the Vantage Lite and to try to gain a better understanding of the approval process. I also wrote to my local MPP to see if she would intervene on our behalf and help move things along. I did all that I could to see that my son get what he'd been without for too long - a voice to call his own. 

My inquiries eventually lead to an answer: the Vantage Lite 'should' be approved within the next few months. 

Meanwhile, Aroga was kind enough to offer the loan of their Vantage device until the approval took place, which turned out to be two months later - but, as I would find out, just because a device is approved that does not mean it is immediately available for lease.

After being approved, the devices need to be purchased by the Centralized Equipment Pool (CEP) and given a catalogue number (i.e. put into the system). The Vantage Lite was not the only type of device that had been approved at that time. ADP had approved several other types of devices and due to budgetary restrictions, the integration of the devices into the ADP program would happen gradually (it costs a lot of money to purchase several devices all at once, let alone several different kinds of devices).

Again, I placed phone calls to get clarification on this new information. I found out that the device purchases would be staggered. It was possible that the Vantage Lite devices would be the first to be purchased but it was also possible that they would be the last to be purchased. There was really no telling when the Vantage Lite would be available for lease. I asked if a single device could be purchased for a client that knew exactly what they wanted, but I was told that's not the way the process works.

Initially thrilled by the prospect of having access to a government program that would fund the costly speech device that Carter needed, I soon began to question how helpful the program actually was if the device we wanted was not available. We had the option of getting Carter a device with lesser capabilities but my feeling was, why settle for something that's not ideally suited to Carter's needs?

The Assistive Devices Program offered some wonderful benefits including the fact that we could lease a device for Carter for a minimal monthly lease fee and if anything went wrong with the device it could simply be exchanged for a fully functioning device. However, the benefits didn't erase my concern about having to settle for a device with lesser capabilities than what Carter needed.

My husband and I considered waiting a further three to four months to see if things would fall into place in our favour. Maybe we'd get lucky and the Vantage Lite would be the first device to become available. After weighing things out, we agreed that we'd waited long enough. Carter had waited long enough. We went ahead and used our ADP funding to purchase Carter's Vantage Lite outright (the funding would cover 75% of the cost). 

This meant several things. 

  1.  We would not be eligible for any further funding for the next 5 years.
  2.  If anything were to go wrong with Carter's device we would be responsible for getting  it fixed on our own (this happened last year when Carter dropped his device at school. You can read that story here.)
And finally, the most surprising and disappointing thing of all:
     3. We were immediately discharged from AAC speech therapy service at the children's development centre. "As Carter's device is purchased, per ACS policy, he is discharged from ACS at this time." (from Carter's Augmentative Communication Services (ACS) Discharge Report dated Jan. 27, 2011)

Like so much of what we'd experienced throughout this process, this made no sense. We were extremely frustrated. Finally, Carter would have his own speech device but we would have no support in helping him learn how to use it.

Click here for Part 4 of Carter's Story: A Device for Carter But Who Will Help Us?

Friday, 25 January 2013

Carter's Story Part 2: The Waiting Game

Part 1

In the land of special needs, immediacy is virtually unheard of. The short list of things that special needs parents wait for includes, answers, tests results, services, funding.

With Carter we waited for answers. Why wasn't he speaking? We waited for help. No one seemed to know what to do with a toddler that wasn't developing speech. After being shuffled through the system at our local child development centre, (we participated in the Hanen program and then received minimal speech therapy service) we were placed on a waiting list for Augmentative Communication services. We waited three years.

Nintendo DS with Tap to Talk program
While on the wait list, I was determined to do something to advance Carter's communication beyond the sign language and gestures he'd learned to use from an early age. I did some research on the internet and came across an AAC speech program that would operate on a Nintendo DS, a portable game system (this was just before iPads became available). I decided to purchase the program and the gaming device. After I figured out the initial programming, Carter had his very first speech generating device and he loved it! It gave Carter a voice, allowing him to label items and take part in basic interactions. It was a great introduction to a simple speech device but he quickly outgrew its capacity.

It was around this time that Carter came off the waiting list for AAC services. His AAC evaluation, that consisted of 4 separate visits with a speech therapist and a communication disorders assistant (CDA) got underway. The evaluation would lead to a prescription for a speech device. The prescription was required in order that Carter be eligible for government funding through the Assistive Devices Program (ADP). The funding would cover 75% of the monthly fee to lease the prescribed speech device from Ontario's Centralized Equipment Pool (CEP).

Surprisingly, upon completion of Carter's AAC evaluation, during which he had the chance to try out various speech devices, I was told by the SLP that it wouldn’t matter what system I chose for Carter, he would do well with anything.

I set my sights on getting Carter a device that was small, thinking that portability was top priority for Carter. He is ambulatory and a very active boy. I wanted Carter to easily be able to take his device wherever he went.

Before any paperwork was put in place to obtain a device, I travelled to Pittsburgh for the CASANA (Childhood Apraxia of Speech Association of North America) conference where I attended a workshop given by an SLP from the AAC Institute in Pittsburgh.

I learned some very important information at the workshop that changed my thinking and my priorities for choosing Carter's speech device. I learned that size and portability should not be my main concern. Instead, I should focus on getting Carter a device that would allow for maximum language output while fostering language development. It was suggested that I consider the Vantage Lite speech device by Prentke Romich Company for Carter.

The language on the device is called Minspeak. Unfortunately, during Carter's AAC evaluation I hadn't been given a thorough explanation about how Minspeak and Minspeak Application Programs work. My brief look at a device with the Minspeak language left me feeling perplexed. With Minspeak, the relationship between the symbol and the word(s) it represents is not always obvious. I remember feeling that if I couldn’t understand the language and symbol set on a device then how would Carter?

I am so thankful that I attended the AAC workshop at the conference. It prompted me to do further research about the Vantage Lite and Minspeak. Once I had a better understanding of the device and the language on it, my decision was made. The Vantage Lite would be the best device for Carter (read my rationale here) and I would move forward with getting him the device. 

Choosing the most appropriate voice output device for Carter was a challenge, but it was a much easier process than what I would go through to get him the actual device.

Click here for Part 3 of Carter's Story: More Waiting

Tuesday, 22 January 2013

Carter's Story Part 1: In the Beginning

This is the beginning of a five part series of posts that tell Carter's story. Some of you may have read a shorter version of his story that I posted a while back. It was written to be included on the Kilometres for Communication website

I was asked to go into more detail about some of the things we've experienced throughout Carter's communication journey. I was happy to do so but felt it only fair to my readers to break the story down into several posts (my apologies to those of you who have read some of this already).

Here is Part 1 of the 'long version' of Carter's story.

In the Beginning

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 our routine, not because of articulation problems but because Carter had a severe language delay. Different forms of speech 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. 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. She mentioned it was likely the result of a 'yet to be discovered' genetic syndrome, but she was unable to tell us exactly 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.

Click here to read Part 2 of Carter's Story: The Waiting Game

Tuesday, 15 January 2013

He's So Well Behaved...Can I Take Your Dog Home With Me?

You'd be surprised at the comments you hear when you're out in public with a service dog. Take a look at this funny video to hear some of the things people have said to this service dog handler:

I wrote the following post for the Waterloo Region Family Network blog in November of 2010 to raise awareness about service dogs and how they can help children with developmental disabilities. I thought I'd run it again here to explain the role that our service dog, Bentley plays in Carter's life. 

Boys Best Friend

Bentley is a seventeen month old yellow lab who came to live with our family a week ago. He will be my son Carter’s service dog. I have been walking Bentley regularly to become more comfortable handling him so that he and I can work together to help my son.

It’s true what they say about babies and puppies; if you're accompanied by either one, you're sure to get a lot of attention. When walking through my neighbourhood I've had others who are out walking pepper me with questions about Bentley: How old is he? When did you get him? The usual kinds of things. And then there's the inevitable comment about what a well behaved dog he is. When I mention that Bentley is a fully trained service dog I get blank stares in response.

I'm guessing that most people are familiar with guide dogs that aid people with visual impairments, but beyond that they haven't been exposed to service dogs that provide help to children with developmental disabilities.

Take a look at the list of ways a service dog can benefit a child with a developmental disability or autism (from the Autism Dog Services website):
  • Improve safety and security at home, in public, and at school.
  • Help prevent a child from bolting into traffic or other dangerous situations.
  • Provide independence, allowing the child to walk holding their dog rather than a parent’s hand.
  • Lend support and a calming influence to the child as they cope in highly stressful situations and changes in routine.
  • Allow greater freedom for families to participate in outings and activities.
  • Help with transitioning and behaviour when out in public.
  • Help improve socialization skills by bridging the gap between children with developmental disabilities and society.
  • Act as a constant companion, offering unconditional love and friendship.

For Carter, one of the greatest benefits a service dog can provide is an increased level of independence. With practise, Carter will eventually hold on to the handle on Bentley's jacket rather than the hand of an adult when out in public. Carter is easily distracted by all that is going on around him during outings and it can be quite a challenge keeping him focused and moving forward. Bentley will act as his anchor as they walk along together.

Carter is non-verbal and interacts and communicates in a unique way. When in public, if people see that he is with a service dog, my hope is that he will receive acceptance instead of questioning stares. Hopefully Bentley will draw people to Carter in a positive way and maybe even create opportunities for him to meet some new friends.

Carter’s siblings are often invited to birthday parties and play dates. Unfortunately, social outings like these are few and far between for Carter. Although having a dog is not the same as being invited out with friends, Bentley will be a loyal companion who will love Carter unconditionally.

To learn more about service dogs check out these websites:     

Friday, 4 January 2013

Bentley's Biz: The Holiday Season's Got Me Dog Tired

Thought I'd stop in to chew the fat about some tail-waggin' things that have been keeping me busy lately.

I've been doing my fair share of work (as my boy, Carter would say, 'Bentley coat on.') But, I've also had my share of play time with the kids - there's been some serious tobogganing and skating going on. I sure love snow, except when my darn ball gets lost in the stuff and I can't sniff it out!

Carter's been to a few appointments and I went along for support. Nothing stressful like visiting the dentist. He saw some people about speech stuff. I'm always falling asleep wherever we go so  all I can tell you about the appointment is that the building was nice but the floors were kind of cool and not very cozy for napping. Although, that didn't stop me.

Hmmm...what else? I did some shopping with Carter's Mom during the Christmas season. Boy, the stores were busy. Watching the people scurry around the mall, I couldn't help but ask myself, 'Who let loose the hounds?'

And, I've been spending a lot of time in arenas. Carter loves him some hockey - especially when it's his brother Jack out on the ice. When Jack has a home game we're always there to cheer him on - arf!

We get lots of attention whenever we go out. People stare at us (er, me). Some even come over and tell Carter's Mom what a good looking dog I am. I usually have a nervous yawn and then go into my downward dog position before I lie down and look the other way (shucks, it's kind of embarrassing). Some of those folks come right over and pet me without asking. Carter's Mom's got a real bone to pick with people like that. If my coat is on it means I'm working, people! Sheesh, what's that saying you humans have, call off the dogs? How about call off the humans?

Around home there have been lots of people coming and going for Christmas and New Year's Eve celebrations. That means more crumbs and food for me to clean up off the floor. You could say it's a bit of a dog's breakfast, but I'm not complaining. Turkey, dressing, baked goods - yum!

You're probably wanting to hear about what a hot dog my boy, Carter's been lately. So, enough about me.

Carter using his talker to tell about the toys he got from Santa.
He's being a real pit bull when it comes to his letters. He's starting to spell on his talker and he's starting to read!

His Mom pulled out a Memory Matching game the other day. The game has word cards and each word card has a matching picture card. She put down some of the cards and Carter matched up the pictures with the words (and vice versa). Carter's mom was so excited. I just know her inner tail was wagging.

I heard Carter's Mom telling Carter's Dad that Carter would try to spell out any words that he didn't know on his talker. That's my boy!

I guess she tried to throw my boy off scent by putting down four words that all started with 'c'. Quick as a dog can lick a dish, Carter fetched the cards and matched them with the right word or picture. There was no fooling him.

I always knew he was the pick of the litter (and I think his Mom knows it too). Thank goodness he finally has a dog's chance to show everyone what he's capable of.

I can't wait to see what he does in 2013!

2012...leave it!

2013...bring it!

P.S. Santa was good to me. He left me a beef flavoured candy cane and a bunch of other treats in my stocking - yum!

To read more of Bentley's Biz click here.