'I open up a world for kids to be able to participate in'

By Louise Kinross

I have a strong image of Laurel Robinson (standing above), a speech-language pathologist at Holland Bloorview. Laurel is always racing up the path to the hospital, or back down to the parking lot, pulling a cart on wheels behind her. The cart is packed with alphabet boards, picture displays, photos and technology she uses to create a way for children who don’t speak to communicate. Laurel, who is usually on the road driving to client's homes or schools, is always warm and bubbly. What I didn’t know about her is that she was born in Montreal, grew up in Saskatchewan, and studied in Alberta. She's also a sign-language interpreter and was a competitive synchronized skater growing up. We talked about her work at Holland Bloorview.

BLOOM: How did you get into this field?

Laurel Robinson: I started in pre-medicine. I knew I wanted to work with children. Then I watched a Monday night movie with my mom about a child who was non-verbal and used facilitated communication. It was a child who had been abused, and was in court. I didn’t know what alternative and augmentative communication (AAC) was, but I knew I wanted to do it. I did an honours in linguistics, and a major in psychology, to get into the speech and language pathology program in Alberta.

Before I began university I used to skate, but then I had surgery on my knee, so I had to stop. I decided to take some sign language courses instead, and I met the Deaf instructor, who worked at the University of Regina. I wanted to learn more, and we began meeting for lunch. I got immersed in the culture, because she introduced me to Regina’s Deaf community. While I was waiting to get into my master’s program to be a speech and language pathologist, I did the two-year American Sign Language program. The friends I’ve made through the Deaf community are my long-time friends.

BLOOM: My son primarily uses sign to communicate. It was our developmental pediatrician at Holland Bloorview who first suggested it. It’s always bothered me that sign-language instructors aren't part of the children's rehab model.

Laurel Robinson: It’s the medical model we all live in. Several years ago, I inquired here about whether we could bring on a teacher of American Sign Language, when the daycare at the Bob Rumball Centre for the Deaf was closing. I felt it was a piece that was lacking for our clients, especially in the school here. I wanted to connect and make courses for adults and parents who had children with disabilities who signed.

One of the biggest myths in our own profession is that technology is the answer.

BLOOM: Yes! Our culture worships technology.

Laurel Robinson: It’s not always the most efficient way for someone to communicate. For some kids, it’s a lot of work and effort. My role is to support communication, it isn't to give a device. It might include making a communication book, or assisting the family so they can learn more sign language. Some kids who are visual learners are like a sponge to sign language.

BLOOM: What is a typical day like?

Laurel Robinson: They’re definitely not the same. Our program goes out into the community. We consult and collaborate in the classroom with school teams, and we go into families’ homes to work with family and support staff. I’m on the road a lot. Communication happens everywhere, and our hope is to create a communication system the child can take anywhere and everywhere, to communicate with everyone.

Everyone is unique, and it’s not diagnosis-specific. We look at a child’s goals—what they need to communicate about, and participate in—and their physical abilities. The system comes second. The system needs to fit the child’s needs.

For some kids who have difficulty accessing technology, communication books and displays make sense. Sometimes we train communication partners in how to ask questions in a specific way, and to look for specific signals in a response from the child—such as a vocalization, smile or eye movement.

Some devices have face-to-face vocabulary and an integrated computer system so the child can access the Internet and social media. The iPad is an example. The iPad is great, because it’s cheap and all the kids use it, so it’s socially acceptable. But it doesn’t work for most of our complex kids. Not everyone can touch a screen with their fingertip.

BLOOM: What are the joys of your job?

Laurel Robinson: I don’t consider it a job. It’s something I’ve always wanted to do, and which I’m extremely passionate about. It’s very rewarding to see a child communicate for the first time.

I’ll never forget the first young girl I prescribed a device for. She was non-verbal. I was training her parents on how to use the device, and she was pushing buttons on it randomly, to figure things out. Then she looked at me and put her hand up. “Do you have something to say?” I asked. She nodded her head and pushed the button with the heart on it, which said ‘I love you.’ Then she gestured to her mom and her dad. Those were her first words to her parents.

I open up a world for kids to be able to participate in actively.

BLOOM: What are the challenges?

Laurel Robinson: I think the funding and resources are always a challenge.

Sometimes the challenge is someone who has very low expectations for a child. When I’m designing something, I say more is better than less. The more they have access to, the more the child can show us what they’re capable of.

I go into great classrooms all the time. But I also go into classrooms where the expectations are extremely low. That doesn’t fly with me. I can’t change that, but I can work in the home environment. I’m someone who can’t say no, because I care. Every child has the ability to communicate, and every child is communicating, and has the ability to do more. A child not learning isn’t the child’s fault. It’s our fault for not teaching them properly, and not having the right tools in place.

BLOOM: What kind of emotions come with the job?

Laurel Robinson: It can be very demanding, very stressful. We have heavy caseloads. The solutions sometimes don’t just appear. There can be a lot of trial and error, and many of the kids we work with are very complex. Every child, to a certain degree, is unique.

BLOOM: So you’re kind of starting from scratch every time?

Laurel Robinson: Yes. There isn’t a one-size-fits-all AAC system. It takes a very long time to do a complete assessment, and to find something that can work best for a child.

We work as a team here with occupational therapists, assistive technology consultants and communicative disorders assistants. It’s very interdisciplinary, and takes a full team approach to ensure a system is suitable. Our external partners include teachers, educational assistants and school board therapists. We might have 15 people around a table discussing what our goals for a child will be.

BLOOM: Is there anything you do to manage stress?

Laurel Robinson: I like to travel, and a couple of years ago I went back to skating. I had competed nationally at synchronized skating when I was younger.

BLOOM: What exactly is synchronized skating?

Laurel Robinson: It’s like synchronized swimming on ice. I love the team aspect of it, and it allows me to clear everything from my mind. I also do spin classes on Mondays and I love theatre.

BLOOM: If you could change one thing about how we approach AAC, what would it be?

Laurel Robinson: I think it’s understanding that technology is not the answer. That’s my biggest thing. Everybody feels technology is the answer, and unless technology is in place, a child can’t be a full participant. That’s a myth.

I’d also like to see mental health initiatives become a part of what we do, so we give children access to that kind of vocabulary and information.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Laurel Robinson: Today, everything comes down to funding. We’re trying to change our service delivery model, to accommodate people on wait lists. But there’s a lot of behind-the-scenes work that goes on in creating communication materials. It takes a lot of time and thought and organization. It doesn’t easily fit into a numbers model.

When I started here, I felt I was able to do a better job, because I had more time to devote to each client. Now it’s ‘go, go, go,’ with an influx of referrals. It makes you have to work in a different way. As a human, and a health-care professional, it’s hard to not try to go above and beyond. That means doing things outside my 9 to 5 work. I still do those extras, because I care.

BLOOM: You and Elizabeth Baird did a No Boundaries project last year. Can you tell us about it?

Laurel Robinson: Working in Toronto, we’re in a very multicultural environment, and lots of our families have a second language in the home. But there are no multi-language communication materials. We decided to create theme displays and communication books in two languages—in English and in the language spoken by families.

We identified the five most commonly used languages by families at Holland Bloorview, and added French. So for grandparents or parents who don’t have a strong English connection, they have an opportunity to interact with the display in their own language.

Like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox, with our latest stories, mainstream news on disability, new books and shout-outs to people making the world a more inclusive place.

Read More

With mind-reading device, 'locked-in' people say they're happy

By Louise Kinross

Patients with no control over their bodies answered questions with a brain-computer interface that learned to read their mental “yes” or “no” in a groundbreaking study in PLOS Biology.

The four paralyzed patients with amyotrophic lateral sclerosis (ALS), who are described as being "locked-in," learned to answer personal questions like “You were born in Berlin” and open-ended questions like “Are you happy?” by thinking “yes” or “no.”

The scientists were able to detect distinct changes in blood oxygen levels that corresponded with each person’s “yes” and “no” response using near-infrared spectroscopy. The device, which sits on the person’s head like a swim cap, emits near infrared light into the brain and records returned light, tracking changes in blood flow that relate to brain activity.

Patients completed between 20 and 46 sessions over many weeks with an accuracy of above 70 per cent with questions with known answers, like “Your husband’s name is Joachim.” Over time the system gets better at reading each person’s brain signals.

In what was reported in news stories as a surprise, three answered “yes” to “I love to live” and “Are you happy?” The fourth patient wasn’t asked these open-ended questions because her parents said her emotional state was fragile.

Lead investigator Niels Birbaumer, a neuroscientist at the Wyss Center for Bio and Neuroengineering in Geneva, said the patients and their families were “excited” to communicate after as many as four years of silence, and to know that their loved ones wished to remain alive on ventilators.

In an email interview, BLOOM asked Dr. Birbaumer if the results suggest that assumptions that non-disabled people make about life with severe disability being “not worth living” were wrong.

“Yes,” he wrote back. “They are utterly wrong. Many papers prove this.”

He said the findings indicate that people are much more able to adapt to disability than we expect.

In the paper, the scientists wrote that the three patients who were asked questions about quality of life, like "Are you happy?," repeatedly responded "yes, indicating a positive attitude towards the present situation and towards life in general."

The patients all lived with their families at home.

Photo by the Wyss Center

Read More

Rude words from doctors and parents harm care

By Louise Kinross

In 2015, a team of Israeli researchers studied the impact of rude comments by another doctor on medical teams while they did a simulation of caring for a very sick premature baby.

The words, from an expert the participants were told was observing them, included that he was “not impressed with the quality of medicine in Israel” and that medical staff in Israel “wouldn’t last a week” in his NICU in the United States.

Twenty-four NICU teams participated and teams were randomly assigned to hear the expert’s rude comments or to hear his neutral comments. The teams that experienced the rude comments scored less well in their diagnosis of the baby’s problems and in how they performed tasks like resuscitation and asking for the right lab tests. They were rated by two judges. “Rudeness exposure [by a medical superior] can adversely affect the cognitive functions required for effective diagnostic and medical procedural performance,” the researchers conclude, and may be a source of devastating medical error.

In a new study published in Pediatrics this month, the same scientists look at what happens when an actress, playing the role of the baby’s parent in a simulation, belittles the medical team. In this study, four Israeli medical teams performed five emergency scenarios. Three of the teams were confronted by a mother who accused them of misdiagnosing her child, threatened to move the child to another hospital, and said: ‘I knew we should have gone to a better hospital where they don’t practice Third World medicine!’ The control team was not exposed to rudeness.

Two teams were given a preventative intervention—one was a cognitive bias-changing game and the other a therapeutic writing exercise. The 20-minute computer game before the simulation showed angry and happy faces and provided feedback that made them less sensitive to negative emotions. The writing exercise involved having one team write about the rude event after it happened. The teams that experienced the rude comments from the mother scored less well on how they diagnosed the baby and intervened, as well as how their team shared information and workload. The researchers showed that the pre-simulation computer game reduced these negative effects on care, while the post-intervention writing exercise was ineffective.

BLOOM interviewed lead investigator Dr. Arik Riskin, a neonatologist at Bnai-Zion Medical Center in Haifa, Israel, by e-mail to learn more.

BLOOM: Why was the study about parent rudeness needed?

Arik Riskin: The study is important because it increases awareness that there are many factors related to human behaviour, relations and communication between [health workers] and between them and their patients or families. We are not robots, we are human beings with feelings, and we react to social situations and behaviours as do other humans. But, in the case of [health workers], the impact can be devastating, because we are dealing with patients, treatments and life-and-death decisions. The remedy starts from awareness and recognition that there may be a problem with this issue. Awareness is important for us as medical team members, but it’s also important to our patients and their families and to healthcare management authorities dealing with ways to decrease medical errors and improve care and patient safety.

BLOOM: How did you define rude behaviour?

Arik Riskin: Rudeness is defined as insensitive or disrespectful behaviour enacted by a person that displays a lack of regard for others. Rudeness should be regarded as a form of uncivil behaviour. Workplace rudeness may include insulting comments, denigration of a person’s work, spreading false rumours, social isolation and bad manners.  Rudeness, particularly with respect to speech, is necessarily confrontational at its core. What constitutes rude speech depends on the culture, the setting and the speaker’s social position in the culture. Rudeness is primarily concerned with violations of human dignity or respect.

BLOOM: What are common causes of rude parent behaviour in the NICU?

Arik Riskin: I would pay a fortune to find out the answer to this question. However, I’ll share with you some of our insights from our experience. Many times rude behaviour is a late response to an incident or some stress (and the NICU experience is very stressful) that the parents experienced before, sometimes even a few days or hours before.

The rudeness is not necessarily turned toward the [health worker] that was involved in that previous incident, and may be unrelated to the parent's infant or to the NICU or hospital. It can be some argument between the parents or in their larger family.

However, when it hits the physician or nurse out of the blue, they start thinking ‘What have I done wrong?’ This starts the process of rumination—thinking over and over ‘Why did I get this insult?,’ drains their cognitive resources and eventually can affect their ability to treat patients.

BLOOM: What were the main findings on rude parent behaviour?

Arik Riskin: Rudeness has robust, deleterious effects on the performance of medical teams.  Moreover, exposure to rudeness debilitated the [collaboration] recognized as essential for patient care and safety.

BLOOM: How does rudeness impair a medical team’s ability to provide good care?

Arik Riskin: Teams exposed to mild rudeness by the patient’s mother had diminished team performance with respect to outcome parameters relating to diagnosis and intervention, and process parameters including team information and workload sharing. These findings not only replicate our earlier findings demonstrating the [negative] effects of rudeness expressed by a senior colleague on individual medical performance, but extend them by demonstrating that similar effects are elicited by rudeness from other sources and are manifested at the team level.

In this study, we also demonstrated that these deleterious effects of rudeness are not restricted to individuals, but also to teams. This is important because—based on the assumption that teams can often overcome and compensate for individual performance limitations—medical work is increasingly structured around teams. Our findings demonstrate that when rudeness is present, the very collaborative processes that generally enable teams to outperform individuals may break down.

To the extent that rudeness impedes team helping and workload sharing, teams may not be able to deliver the heightened level of patient care that practitioners have come to expect from them.

BLOOM: Why was the computer game some teams played effective in reducing the negative effects of rudeness, while the writing exercise others did wasn’t?

Erik Raskin: Prior to the simulation, teams in the preventative cognitive-bias modification intervention engaged in a 20-minute computer game in which they looked at a series of morphing faces, were asked to move a cursor to indicate whether the emotion was more of anger or pleasure, and then received immediate feedback on their choice.

During this game, the computer determined the participant’s threshold to threat—that is, the angry faces—and then gave them feedback designed to raise this threshold and ‘immunize’ them from devoting substantial attention to minor threats.

Examination of the manipulation checks showed that those in the computer intervention viewed the mother as ruder than those who experienced the rude comments with no intervention.

As designed, the computer intervention ‘immunized’ participants’ medical and therapeutic performance and teamwork by shifting their attention away from the implicit threat posed by the mother, likely preserving cognitive resources for the tasks at hand. The computer intervention operated not so much by mitigating the appraisal of rudeness, but by making team members more resilient to it.

The teams who did the writing exercise worked on the simulation with rudeness first, and then went to a debriefing room where they were asked to write a paragraph or two about how they thought the mother of the infant felt when it seemed to her that the team was unsuccessful in treating the baby.

By the end of the day, those in the narrative group did not view the mother as ruder than controls. These results suggest that while writing about the experience from the mother’s perspective facilitated participants’ positive reappraisal of her rude behaviour, it failed to help them overcome the cognitive disruption caused by it.

BLOOM: Is there a danger in making health workers less emotionally responsive to families?

Erik Raskin: As mentioned in my answer above, the computer game didn’t make health workers less emotionally responsive. On the contrary, it just ‘immunized’ them, thus changing their focus and less disturbing them in their work.

BLOOM: Are there times when a parent questioning the care is appropriate?

Erik Raskin: Parents questioning the care is always appropriate. They have the right to ask questions. In my opinion we can use it as a means to help us do better, think again about the diagnosis, re-think treatments given and other options of treatment. Generally, this is a good interaction with parents, and many physicians and nurses, like me, see parents as our partners in the goal of giving the best treatment to their children, helping them survive and grow, and go home, as healthy and happy as possible.

There is a big difference between real questioning and seeking explanations in the best interest of your baby, and rude comments, insults and blaming of the physicians and nurses. [In the latter case], parents throw all their stress and frustration (because the infant was born prematurely and is very sick) on the medical team that is trying its best to save their infant, give life and treat as best as they can.

There is also the issue of timing. We allow parents in our NICU all day long, including in rounds, but parents must understand that we also need to treat, to do resuscitation and other procedures, and to look after other babies. So we are not all the time available to answer every question. They should be patient and understand that sometimes we simply don’t have time to talk to them immediately, and we’ll be happy to do so later when we have time.

So, please don’t start shouting at us, making rude remarks about how careless or less attentive we are. This makes us feel bad, makes us ruminate about ‘What have we done wrong?’ and drains our cognitive resources in a way that eventually hurts our performance or even causes us to do unintentional harm.

BLOOM: A media story about your study includes a quote from a doctor who says that outside the NICU, parent rudeness is often a legitimate reaction to poor care and system problems. Is it possible that this could also happen in the NICU?

Arik Riskin: Sorry, but I disagree with this statement. Rudeness is never a legitimate reaction—not in the NICU, not outside the NICU and not anywhere else. This is not a nice way to express your concerns. It is a totally unacceptable form of communication among people in general. It is an act of incivility that is no less harmful than aggressiveness or bullying. 

Parents should and can express their concerns about treatment, and if they think it’s poor care, they should tell this to the medical team. If this doesn’t help, they can talk to their superiors, and if this doesn’t help, they can ask to go and get the treatment in another facility. The problem is that many times it’s not poor care, but mainly frustration on behalf of the parents because their infant is really sick and doing badly despite all the treatments given to him or her.

But, I’m ready to hear this from parents, too, and I’m not ashamed to consult another expert and seek another opinion, as long as it is for the best care of my patients. Unfortunately, many times nowadays parents are confused by a general atmosphere that is very criticizing [about] everything. This is reinforced by the media ‘looking for headline news,’ attorneys looking for law suits, and family members (who think they are supporting the parents by questioning everything, but cause the parents lots of confusion and eventually mistrust in the care their baby gets.

Parents need to have some trust and faith in the team taking care of their baby in order not to lose hope, which is so important for them, and us too. Parents should ask questions, should learn and read about their infant’s condition, and should inquire about the diagnosis and possible other treatments. But at a certain [point] they need to have some trust and confidence in us as medical team members, coming days and nights to do our best for their babies.

BLOOM: Are there differences in how parent rudeness vs medical staff rudeness impacts medical care?

Arik Riskin: Both are as bad, having devastating effects on individual team members and on medical teams’ performance as a whole. We haven’t compared both sources at the same time in the same settings, so I can’t guarantee which is worst. But based on our studies and the studies of Professor Erez and colleagues on rudeness in other settings, both have very bad influences on the [person targeted] and on those who witness it.

BLOOM: What advice would you give parents?

Arik Riskin: Try to be as patient and polite as possible. We understand that you are in real [distress], and are there for you. We even understand when you are not so nice to us because you are sad and worried. But, being sad or worried and even frustrated doesn’t necessarily need to make you rude to us.

Being rude simply doesn’t help and might actually cause the opposite by distracting us and disturbing us from doing our best. 

I have worked with many parents over the years and those that had a positive attitude to all that was happening, despite all the stress and hard times they were going through, coped much better than other parents. I believe that this attitude gave them hope, which is so important in tough times. I think they may have also been more open to the support we are willing and trying as best as we can to give to all the parents of the sick infants and preemies we’re taking care of.

BLOOM: What measures should hospitals put in place to try to reduce rudeness by senior medical staff or among medical peers?

Arik Riskin: Awareness is also important among team members, educating us to treat each other with dignity and respect. The days when a senior physician or charge nurse could be rude to a resident or trainee are over…not because it’s impolite and unfriendly, but because it [endangers] our patients.

By highlighting the impact that adverse social contexts may have on team-level [collaboration], our findings provide the foundation for a wide range of interventions aimed at enhancing patient safety. Our results suggest that instituting protocols and procedures aimed at bolstering the defenses of medical teams to the cognitive distraction and drain elicited by rudeness can help mitigate the devastating consequences of these events, even when they can’t be prevented.

BLOOM: Do you feel there’s a role for narrative writing and reflection, even though the intervention used in your study didn’t show a benefit?

Arik Riskin: Yes, I would definitely not quit this possible route of interventions, especially not reflection, which is an excellent learning tool for medical teams.

BLOOM: Have you considered doing a study to look at the impact of rudeness by medical teams on parents of premature babies? Some parents have traumatic experiences related to being talked to in a callous or dismissive way, or in hearing their child being talked about in a degrading or disrespectful way.

Arik Riskin: This is an important subject, which I’m sorry to say still exists as a problem. I haven’t done research on it, but I know that many others have studied this important aspect of communication.

Teaching physicians and other health workers to talk nicely, gently and politely with parents is no less important than the medical treatment we provide. I recall my first lesson in neonatology as a resident. The director of our NICU then, the late Dr. Berger, taught me. We went to talk to a mother after a delivery. The mother was very stressed and frustrated even though her baby was improving. Then Dr. Berger sat with me and told me her insights about how mothers feel after delivery, and how we need to talk to them and support them. She told me this was my first lesson in pediatrics and in neonatology—How to talk to a mother—and it was more important than any other lesson I’d learn.

I carry this important lesson with me and pass it over to my students, residents and fellows. I still find talking to parents the most challenging, but also the most rewarding, part of my work. I look at them as our teammates in the long, long [journey] we have to go together to make their infant survive and to be as healthy and happy as possible.

Read More

I wish I'd seen the beauty of sign language years ago

By Louise Kinross

Last night was fun. I got to tell a story in American Sign Language (ASL) about a funny incident that happened when I was a teen. I was doing a test for a sign language course and we had to to tell a story about growing up. 

Mine involved my 16-year old self, my best friend, a bottle of rum that our old babysitter bought for us, and an encounter with the police late at night as we lay on the grass looking up at the stars.

In preparing for it I got to look up many signs on Handspeak, which is a wonderful site where you can watch video clips of different signs.

I also typed out my story, but in the word order that is used in American Sign Language (ASL), which differs from English.

When my son was young, I tied myself up in knots over whether to use signs in English or ASL word order.

"ASL is a language completely separate and distinct from English," according to this description from the National Institutes on Deafness and other Communication Disorders. "It contains all the fundamental features of language—it has its own rules for pronunciation, word order and complex grammar."

Instead of recognizing the beauty of ASL as a rich language that stands on its own, I was always translating signs into English and then fretting that it wasn't "proper English." How would this affect my son?

So, for example, to ask someone's name in sign language, you use signs that translate as "You name what?"

We ended up using ASL signs, but in English word order because we were also speaking at the same time we were signing.

This meant we were never fully immersed in ASL and deaf culture. 

We were, as they say, sitting on the fence.

I think this happens to a lot of families when their kids with disabilities are young. They are bombarded with different therapies, techniques and approaches and advice from professionals and other parents and just about anyone on the street who will chime in to give their opinion.

What if I make the wrong decision? What's the right decision? 

Meanwhile, all those years ago, in terms of communication, I was conflicted about whether we should use sign at all. It isn't generally recommended by therapists who prescribe augmentative communication (voice devices, picture boards etc). "No one in the community will be able to understand him," I was told.

And it wasn't something that my son naturally took to because of his weak fine motor skills. On the other hand, most of the "words" my one-year-old daughter had were signs she'd learned from us signing to our son.

When we were out and about I felt self-conscious about signing. I wanted to blend in like the rest of the young families in our neighbourhood. I still "cared" about what other people thought of me (ha ha, how times have changed).

We tried to do everything: sign, pictures, a voice device, years of speech therapy. 

There are so many value judgments about all of these things, and even value judgments about approaches within each area. 

Of course speech is the most highly prized, which can push parents like myself to pursue it for years and years, even though the child is not showing any functional gains (or maybe that was just me, maybe I just didn't see the light).

My son has chosen sign language as being the mode of communication he's most comfortable with, and that is most efficient. He's still limited in what he can express because of his fine motor issues, which means we can't get a really rich understanding of his thoughts. But it is his language. 

A few months ago a person who's helping us with life planning suggested that we needed to get on board with sign language in a bigger way. I think she was surprised at just how little signing my husband and I did (and our other kids, despite going to sign language camp for years, do none. It had stopped being "cool").

So my husband and I took a course and a couple of our workers did too (when our son was very young, we'd gone to an immersion program and also had weekly lessons from a tutor).

I adored my sign language teacher this time around. 

She told the most amazing stories that always had us in stitches. Part of it was how visual and dramatic sign language is. It's so much more than hand signs, it's facial expressions and body movements and sounds. It's often like theatre.

I began to see how full and fun this language was.

The other day we went by our favourite party shop and my son was very upset to see a sign that said the store was moving.

He was looking in the window when one of the staff came out. She recognized him as he loves costume gloves and has bought many pairs there. They were selling everything at half price before their move, and she said she'd found a box of gloves in the basement that she wanted him to have.

This was like Christmas for our son.

But what was so interesting to me was after we left, he signed: "New building where?"

He was asking me where the new store would be located.

What stunned me was his use of the sign for "building," which I hadn't seen for years.

In the last couple of months, since we've begun consistently signing with him, he's starting to string more signs together in a sentence, and to surprise us with signs. 

In the past, we've often expected him to express himself in silent sign while we, and everyone else around him, "talk, talk, talk." 

Now I realize that we weren't entering fully into communication with him. We weren't giving him the message that sign language was this rich, credible language that was worth using. We kind of expected him to use it as a default, while we never learned more than the basics (which spoke volumes), and kept on chattering.

I'm excited about where things may go from here.

Read More

Clinicians must better respect children's 'agency,' ethicist says

By Louise Kinross

The other day my son had an interview to volunteer in a cat adoption centre in a PetSmart.

He can’t speak and doesn’t have a robust form of alternative communication, but he can use some sign language.

That night, when I asked him about it, he signed that there were two cats. They were black and white.

(I’m now not sure if one was black and one was white, or if they were both a mix of the two colours, or if one was a solid colour and the other wasn’t. It’s amazing how much you can lose when communication is fuzzy).

They were small, he signed. He got to pet them. In his job he would feed them and clean their cages and do paperwork for adoptions.

“What were the cats’ names?” I asked.

 He made the sign for ice-cream (which in a different context could also mean “lick” or “lollipop”).

“Ice cream?” I said.

 No, he signed.

 Licky Tongue? This is a Pokemon character he used to like.

 No.

“What is the first letter in the name?” I said. I grabbed a piece of paper, a pen and a book he could write against and thrust it upon him.

I felt like a desperate contestant on a game show.

He kept repeating the original sign. He didn’t want to write down a letter because it’s hard for him to write.

“Please, just the first letter.”

Finally he wrote an “L.”

“L?” I asked.

Yes he signed.

“/l/” I said, sounding the letter out phonetically.

“/l/ is for lollipop,” I said, referring to the Jolly Phonics system we’d used years ago to teach him to read.

Yes! he signed exuberantly.

“Lollipop?” I said. Was this a clue or the answer? Unfortunately, the wheels don’t turn that quickly in my mind anymore.

“Lollipop is the name of the cat?”

Yes, he signed. Then he began to clap.

“The cat this morning was called Lollipop,” I yelled out enthusiastically to my husband.

I felt like I’d hit the jackpot on Jeopardy or just won a brutally competitive game of charades.

“What was the other cat called?” I said.

My son looked at me blankly. He got up and walked into his room. I couldn’t blame him for giving up.

About 10 minutes later I was still thinking about the cat called Lollipop.

One of the cats was black, he’d said. Suddenly “Licorice” popped into my mind. Licorice would be the perfect name for a black cat.

I raced into his room: “Is one of the cats called Licorice?”

“Yes,” he signed.

“Licorice and Lollipop!” I exclaimed. I gave him a high-five and screamed out the news to my husband.

Then I texted the worker who was with Ben that morning. “Was one of the cats called Lollipop?”

Sometimes my son gets so frustrated with our inability to interpret what he’s saying that he’ll sign “yes,” just to get me off his back.

“Yes,” the worker wrote back. “He read the cat’s name on the adoption paper.”

“Licorice?" I typed in. “What about Licorice?”

“Yes.”

It had taken about 30 minutes to determine that the cats Ben saw were in fact called Lollipop and Licorice.

But what if I’d stopped guessing after getting “ice cream” wrong?

I shared this tale last week at a talk by Dr. Franco Carnevale, ethicist and psychologist at McGill University. Dr. Carnevale worked for decades as a nurse in the pediatric intensive care unit at Montreal Children’s Hospital. 

Dr. Carnevale asked how we can better hear the voices of disabled children in healthcare, particularly those with intellectual disabilities or who can’t speak. The question is on the agenda of VOICE—an interdisciplinary research team he’s leading to identify and address ethical issues in Canadian children.

Dr. Carnevale encouraged us to think of children as agents “who have a capacity and intentionality to engage and form meaningful preferences and to direct those preferences in a way that matters. They have an intentional, meaningful engagement with things that matter to them.”

He said the concept of a child’s best interests must be “highly informed from the child’s agency, from their expression of interests.”

This is particularly challenging when a child can’t communicate in conventional ways. “We consider all young people as vulnerable, but there are all kinds of ways that young people who have any form of compromise in their expressive capacity are additionally vulnerable and marginalized," Dr. Carnevale said. “We don’t have a clear way of understanding how things matter to them. Does that mean their voices matter any less?”

Dr. Carnevale spoke about how solving ethical issues in medicine usually centres on the child’s “best interests. But there’s no agreement on what that is," he said. “When we do case consultations, people make rival claims on what is in this child’s best interests.”

He noted inherent problems with the way we assess best interests.

“The interests are being evaluated and declared by adults without the recognition that adults have interests that may not be congruent with the child” he said. “There is an inescapable subjectivity when adults—healthcare professionals and parents—assert what is in the child’s best interests.”

Dr. Carnevale said we tend to systematically underestimate children’s ability to participate in treatment decisions. In addition, our understanding of capacity is poorly developed and often arbitrary. “You either have capacity or you don’t,” he said. “There’s a threshold. If you’re below that, what you want and how it matters has no ethical weight. I worry deeply about the common ‘all or none’ tendencies among clinicians' views of mental capacity.”

When considering what’s best for a child, “suffering” and quality of life are discussed. “But almost always these are incongruent with how people with disabilities themselves describe their quality of life in studies.”

Dr. Carnevale said the treatment teams who make life or death decisions about whether to continue or withdraw care don’t have experience with children who survive prematurity or injuries with medical complexity or disabilities. “We’re imposing highly uninformed concepts of quality of life with the illusion that they are objectively verifiable.”

Clinicians need to strive for empathic attunement, he said, which he described as “not just trying to get the emotive sense of a person, but trying to get what that person’s perspective is like. We need to find a way to foster intellectual humility on very complex concepts.”

As a reminder that medical beliefs can be based on biases, not science, he recalled that when he began nursing in the 1970s clinicians didn’t treat pain in newborns. That’s because they believed newborns didn’t feel pain. In fact, studies now show newborns may have a heightened sensitivity to pain.

Dr. Carnevale said he’s horrified to recall how he and other clinicians performed painful procedures on infants, without pain control, despite the fact that the babies grimaced.

Is it possible that we misjudge capacity, and what matters to a child, in a similar way?

How can we be so sure of a child’s inner world when they can’t express it in ways that we understand? 

Dr. Carnevale said our concept of best interest must be “maximally informed by the child’s own important information on how things affect them. I worry that we too readily dismiss the importance of taking the required time to understand, by conflating communicative difficulties with experiential compromise. It's easy and tempting for someone who is rushed to assume all words are meaningless.” 

Read More

Be gone joy-thief

I was elated when I read this blog post by Anchel Krishna at Today's Parent. It's about her daughter, who has challenges speaking, having a "real conversation" with words.

When asked about her day at school, Anchel's daughter offers up what she considers the most salient piece of information: "Cried a little bit," she tells her mom and grandmother, ignoring their specific questions. "She had a message, she had something she wanted to tell me... and she told me," Anchel writes.

I also felt heartache when I read Anchel's post. I will never hear my son say words like that, I thought.

Remember that old saying: Comparison is the thief of joy (Theodore Roosevelt)? I couldn't help comparing my son's abilities with Anchel's daughter's and feeling that twinge of regret and loss.

But then today, when my son got off the bus, he presented me with his own version of: "Cried a little bit."

In sign, he told me "I had a bad day and I couldn't stop blowing my nose (he does this when anxious). I'm sorry."

Like Anchel's daughter, my son was sharing what he wanted to tell me. And I had to think: Does it matter if it's not in audible words?

Read More

A mom's passion for AAC eclipses her son's

 










By Stacey Moffat

My son Carter and I recently attended our first Breaking the Ice Conference for people who use augmentative and alternative communication (he's holding his voice device in the photo above). This year the conference offered a children's program I thought Carter would enjoy. We attended for the full day so Carter could participate in the children's program and then we'd have lunch together and watch a Town Hall meeting with adult AAC users.

As the day approached I was excited about how great it would be for Carter. He'd have fun and be inspired and motivated by others who use talkers just like him.

But by the end of the conference day, my rose-coloured glasses were a bit tarnished, I think. Carter was eager to attend the children’s program and enjoyed tracing his body and then decorating the craft paper with information about himself (see masterpiece posted behind him above). But if he'd had his way, we would have headed home after that.

Carter was the only person with a talker at the event who walks, and it was a real challenge because he didn't want to sit down. Inbetween activities he kept busy going up and down escalators and was having so much fun that when I told him we were all done and it was time to go back to the event, he had a meltdown. 

After we ate, I introduced him to Jess and Emily, two amazing young ladies I met last year when I attended a condensed version of the conference. Carter liked looking at the girls' talkers because they were different from his. He examined their name tags and was thrilled to be able to say their names using his talker. Jessica is programmed into his people page because it's his teacher's name and Emily is programmed into his toy page because it's the name of one of his toy trains.

But these encounters didn't last long.

Carter was determined to find the perfect spot to play with the Lightning McQueen car he takes everywhere. I let him wander while I stayed in my seat and tried to keep an eye on him. A lovely conference organizer noticed my craning neck and offered to walk around with Carter. The two ended up cozied up in a corner reading books while I watched a presentation about AAC mentors put on by Barbara Collier of CDAC and several adult AAC users. Of course I'd already heard about the program and signed up for a mentor!

I've felt a strong pull to the AAC community because Carter hasn't officially been diagnosed with anything other than global developmental delay. That means we've never had a place in any one disability group, like autism, cerebral palsy or Down syndrome. As a result, I think I've been on a mission to embrace the AAC community as "our group."

But it's a diverse group and it's a challenge connecting with members because the opportunities are few and far between. I guess it's natural that when I hear about something, I jump at it. But sometimes I lose sight of what it is I'm looking for, and whether it's suitable for Carter.

In reflecting on our experience at Breaking the Ice, I realize that while I'm driven to take part in all things "AAC," my nine-year-old son, like most young boys, isn't.

When we finally sat down for the Town Hall meeting, Carter pointed to the door and signed "car" over and over again. Thankfully, a mom who I’d met earlier and whose son was in the children’s program with Carter, came along with her iPad. She put on a TV program for Carter to watch (without sound) and that kept him somewhat entertained.

Once things got underway with the meeting, I hoped Carter might listen to the AAC users who answered questions (they'd been given the questions in advance so they could prepare). The questions included "What inspires you?" and "What keeps you motivated when conversations move too fast and it becomes difficult to add your own comments?"

Several wonderful responses were shared. Comments like Jess's brought tears to my eyes: "I am inspired by my mom. She has always been there for me. She is an incredibly strong, outgoing individual who never gives up on anyone. Even if she's going through a rough time, her courage and strong will inspires me."

In hindsight, I can't blame Carter for not taking an interest in what the adults had to say. I'm pleased we were able to attend a small portion of the meeting, but I recognize that the meeting was much more interesting for me than it was for Carter. What nine-year-old boy wants to sit through a meeting of adults? 

Perhaps the best is yet to come from our experience at Breaking the Ice, and that's the opportunity to provide feedback to the conference committee.
I can think of lots of activities that Carter and other children who use AAC might find motivating for future sessions (beyond riding the escalator!). Maybe they could have a Town Hall meeting of their own. By sharing my input, future conferences can be shaped in a manner that will draw more young families like ours, resulting in more participation from children.

I'll continue to get involved with AAC events because I enjoy connecting with others in the community and I want to stay educated. I'm glad that I finally have a community to embrace. But from here on in I'll think more carefully about Carter's involvement. Instead of feeling the need to take part in an event just because he's an AAC user, I'll first consider what Carter might get from the experience.

Will he truly enjoy himself, or would he be happier hanging out at home?

Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada on the Executive Committee. She blogs about raising a child who communicates differently at More than Words.

Read More

Let's give kids who don't speak tools to succeed

How many words would the average, middle-class three-year-old child hear spoken to her in the course of a year?

"About 6 million," said Pat Mirenda, an expert on augmentative and alternative communication (AAC) who referenced a related study during a keynote talk at the Bloorview Research Institute's Pursuit Awards yesterday.

Pat said we could expect a deaf child of deaf parents to watch about the same number of signs over a year.

But what about kids who can't speak or sign and use a voice device or pictures to communicate? How often would a young child see these symbols used around them in a year?

"Zero," Pat said. "Zilch. We're not in a symbol-using community and children rarely see others using the same symbols they use, yet we expect them to magically be able to know what to do."

We know that children need to absorb vast amounts of language before being able to express it, Pat said. We know that modelling of AAC is important. But this is an area where we aren't translating research into practice.

"We don't routinely do it," Pat said. "We don't teach teachers they should point to symbols when communicating, we don't teach parents to point to symbols, and we don't teach educational assistants and peers."

Another gap occurs when we assume children who use AAC can't learn to read. "If we can teach a child to manipulate 26 letters, they can say whatever they want," Pat said, noting that expression isn't dependent on the number of symbols programmed into a device.

"But literacy is not a routine practice, still, in Canada, the U.S. and elsewhere in the world." Too often professionals have low expectations for complicated kids and make a decision, at age two to five, that literacy isn't a goal. "We should just teach them to make sandwiches," she said.

In an earlier interview, Pat said this sets children who use AAC up for exclusion. "They're the ones in self-contained classrooms who often don't get literacy and language instruction, and people just say 'that's too bad.' It's kind of stunning in 2013 that people still think they can tell a book by its cover.
.
"We know how to teach children to become literate, but we're not doing it," she said at her keynote.

Historically clinicians have decided what type of AAC system a person uses, and the individual had no input, Pat said. 

She talked about the importance of self-determination for people using AAC, which she described as including the following:

Autonomy, which means being able to act according to your own preferences, interests and abilities. For example, if a child wants four-letter curse words programmed into his device, he should get them.

Self-regulation, which involves problem-solving, goal-setting, self-monitoring, decision-making and self-evaluation. Of course clients won't always make good choices, but that is true of all of us, Pat said.

Psychological empowerment, which is about helping children see they can make things happen in their own life. It's about "learned hopefulness," rather than "learned helplessness," she said.

And self-realization happens when you understand your strengths and challenges and can capitalize on what you're good at.

Pat said the focus must be on what a child needs to communicate in settings that are "important and motivating to the child."

She said that too often voice devices are programmed with words for "wants and needs" but not for everyday socializing which is the foundation of friendship. Being able to tell jokes, make comments, and use phrases related to games are important to kids. "Relationships" are the ultimate prize, Pat said, and if an AAC system isn't helping a child maintain and enhance their social network "what are we doing?"

Pat is a professor in the department of Educational and Counselling Psychology and Special Education at the University of British Columbia. She is also a board-certified behaviour analyst.

Read More

A place to call our own

By Stacey Moffat

My son Carter (above) has repetitive behaviours and sensory issues. He’s non-verbal and struggles with social skills. Yet he doesn’t have autism.

Carter’s fine-motor skills are weak. He used to drool (before he had surgery) and has problems with motor planning and coordination. But he doesn't have cerebral palsy.

He’s developmentally delayed and has low muscle tone. But it’s not Down syndrome.

Carter's got a smorgasbord of problems that he shares with peers who have autism, cerebral palsy and Down syndrome. But the smorgasbord doesn’t lend itself to any specific diagnosis, other than the catchall "global developmental delay." So we've missed out on the benefits of being part of a defined community, a support network.

Although speech problems are part of the worlds of autism, cerebral palsy and Down syndrome, parents seem to stay rooted within their child's diagnosistic group. No one branches out to form new groups based on common needs, like communication. Who can blame parents for sticking with their groups? If I was part of an organization that offered resources and support and access to loads of parents who’d blazed a trail before me, I’d immerse myself in that group and stay put too.

I tried to do just that when Carter was born. I joined a support group for parents of children with a cleft lip and/or palate. I wanted to learn from other parents and give back by sharing my own experiences.

But as time went on, Carter seemed to be lagging behind the other children. Other parents talked about their kids speaking and meeting typical milestones. I began to realize that Carter was different. He wasn't a textbook case of a child with Pierre Robin Sequence and a cleft palate. But I didn't understand why.

Although I enjoyed the sense of community, I became anxious with the questions new parents were asking: “How is your child doing now that he’s had the cleft repair surgery? Is he having any issues with specific speech sounds? Do you think he’ll need speech therapy?”

I didn’t know how to answer their questions. "No, Carter isn't having issues with specific speech sounds because he isn't attempting to speak!"  I felt a panicky need to ask my own questions: "Your child is starting to speak? How? Why isn’t my son speaking? Isn’t it normal for there to be a speech delay? Why is my son different? What's wrong with him?"

I didn’t ask my questions. Instead, with great sadness, I concluded that the support group was no longer a good fit for us and stopped going.

I was isolated. We were dealing with something bigger than a birth anomaly and our issues went beyond what this group was designed to support. But where would we find support when we didn’t really know what it was we were dealing with? Our issues didn’t fit neatly into a package like Down syndrome or autism or cerebral palsy.

I felt like a drifter, alone at sea in search of answers. What was going on with my son?

My search led me to a speech therapist from the United States who specialized in oral-motor issues. She diagnosed Carter at age five with childhood apraxia of speech and dysarthria. Armed with this information, I was hopeful. Perhaps there was a new speech community we could call our own.

I went to a conference in Pittsburgh by the Childhood Apraxia of Speech Association of North America. This was it, I told myself. I was going to educate myself and make connections with parents and therapists who understood Carter’s speech problems.

I mingled and chatted. I listened to parents tell stories about their challenges to get their children to pronounce specific consonant sounds and string words together. I even attended a couple of sessions on how to work with children to improve speech clarity. Speech clarity? I didn’t have a clue what these parents and therapists were talking about!

Carter’s speech consisted of monosyllabic vowel sounds. He had no consonant sounds. There had never been any babbling – unintelligible or otherwise. Why was I attending a workshop on speech clarity?

We didn't fit into this new speech community either. We were like square pegs and I was trying to fit us into round holes. The realization was devastating.

Shortly after that conference I sent a video of Carter making his limited sounds to Nancy Kaufman, a speech therapist and renowned expert in the area of apraxia. After viewing the recording, Nancy phoned me and, with great compassion, told me to find Carter the best voice device possible.

That’s what I did. And it opened up a whole new world for Carter. He uses his talker at home and at school and he’s starting to use it more when we’re out and about. He makes comments and requests. He asks questions. And he now has a much easier time interacting with everyone, most importantly, his peers and siblings. A goofball at heart, he loves making people laugh with his jokes. And, like his brother and sister, he’s discovered potty humour (he loves the underwear key on his talker).

Carter has had his talker for just over two years now. But we still feel alone. It’s been hard to make connections with other parents of children who use devices. I don't believe it's because they're not out there. I believe it's because we’re small in numbers and we’re all taking separate routes to a similar destination.

If Carter could get together with other children who use talkers I believe it would motivate him. I also think it would be good for him to be around others who communicate at a slower pace. Too often he gets short changed because people don’t allow him the time he needs to say what he wants to say.

I’ve floundered in search of a supportive community for Carter his whole life. Sometimes I’ve felt bitter that Carter doesn’t have a diagnosis that would allow us to fit into a well-defined group. But I’m trying to look at things differently now. Carter just turned nine. I can relate, somewhat, to many parents of children with special needs, because Carter shares traits with each and every one of their children. And for that I am grateful.

I do still have a dream, however. It's that parents whose children use voice devices (no matter what their diagnosis) come together in a supportive group of their own. If you’d like to be involved in an AAC network, please e-mail me at snmoffat@gmail.com.

Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada and Gail Fisher-Taylor of Kilometres for Communication to create an AAC network. She blogs about raising a child who communicates differently at More than Words.

Read More

Little miracles

Ben has never been able to write due to the tiny size of his hands, their weakness and problems with co-ordination. He could only ever write some capital letters and it was painstaking for him. We had given up on writing and hoped he would become more proficient keyboarding as a way of expressing himself in the future.

Just before school ended I spoke to a local Kumon centre about a reading/writing program. I assumed Ben wouldn't be able to do the writing part. The Kumon lady encouraged me to see what Ben could do. Ben has begun to write, and to write in lower case, which he never mastered before. He can sit for 15 minutes with a book and go through it on his own.

I'm excited to see how this may progress this year. To date I simply brought the books home and had him do them there. But I think it might be good for him to go to the Kumon place where other kids do them.

Read More

Kumon man

Ben has never been able to write because of weakness in his hands.

I started him on Kumon reading but figured I would always have to fill the letter blanks in. It's hard for him, but he's doing it now. And he'll even do a whole book by himself -- quite miraculous considering the degree of his attention problems.

And he's able to identify most words when asked "show me ___________"

I know writing is supposed to aid reading so I'm very happy about this.

Read More

Choosing Carter's voice device

Today we have a guest post from Stacey Moffat, a teacher, writer and mother to three, including Carter, 8, above, in Kitchener, Ont. I was interested in the topic of voice devices because we are pursuing one for Ben. We have abandoned many in the past because we always found the technology archaic and clunky and a disincentive to using. It seems that different programs are popular in different geographic regions. Tell us about what your child uses and why! Thanks! Louise

Choosing Carter's voice device
By Stacey Moffat

I gazed at the symbols on the voice output device shown to me by the speech therapist and I felt perplexed. The symbols were abstract and I found the system confusing.

I was used to picture symbols where one picture represents one word. Nouns of course, were easiest to represent: dog was shown by a picture of a dog and apple a picture of an apple. For more complex words like ‘in,’ positioning was shown with an arrow pointing into a box.

The language on this device was Minspeak. With Minspeak, the relationship between the symbol and the word it represents is not always obvious. For example, on this device the picture of a mountain with the sun going down behind it meant ‘get.'

To me, having a system that used pictures that didn’t clearly represent the meaning of each word seemed confusing. Unfortunately I wasn't given a thorough explanation about how Minspeak and Minspeak Application Programs work. Instead I was told that it wouldn’t matter what system I chose for my son because he would do well with anything.

But, I thought to myself, if I can’t understand the language and symbol set on a chosen device how would Carter, a boy with a developmental delay?

I decided to move forward with choosing a device based solely on size, thinking that portability was top priority for Carter. He is mobile and a very active boy. I wanted Carter to be able to take his device wherever he went.

Thankfully, before any paperwork was put in place for obtaining a device, I travelled to Pittsburgh for a conference put on by CASANA where I attended a workshop about Augmentative and Alternative Communication (AAC).

Here are some things I learned at the workshop that were tremendously helpful and steered me away from focusing on size and portability and instead toward choosing a system that fosters language development and maximizes language output.

I learned that portability and compactness do not necessarily go hand-in-hand with user friendliness and easily accessible language.

I learned that the more words that are accessible to the user on the main page of a device the better – these are called core words. They are words that are used frequently and repeatedly in the English language (e.g. want, put, get, me, my, here, there, etc.). It is most advantageous for users to have as many core words accessible to them as possible.

It was explained to me that having a variety of pages set up with different themes (a page for playing cars, a page for circle time at school) can become cumbersome to users. Systems with this type of set-up are often abandoned because users get tired of having to navigate through a web of pages in order to say what they want to say. Having several pages to sort through slows down the output of speech which can cause frustration. Never mind the fact that caregivers, teachers and therapists can often spend hours programming devices with vocabulary around specific activities only to have the child use the programmed words on a very limited basis.

I learned that there are just too many words in the English language to have every word represented by one picture. Add to that the fact that not all words lend themselves to being represented by a picture. This takes us back to my earlier example where ‘get’ was represented by a picture of a mountain with the sun going down behind it. With Minspeak certain pictures can represent up to five different words.

Minspeak Application Programs can seem quite overwhelming and difficult to understand. However, if you are willing to take the time to learn about them through direct experience you soon discover that while Minspeak is a language unlike any other, it is logical and well organized.

The clincher for me was the fact that systems using Minspeak focus on language development, not just language output. For children with limited speech that means becoming competent with language so that they can build sentences word by word. Unfortunately this process does not allow device users to speak as rapidly as those with typical speech. However, by learning to build his own phrases, I feel that Carter is more empowered when expressing himself. Rather than being limited to pre-programmed sentences that someone else has put in his device he is learning to voice his own thoughts and opinions, and how he feels about something.

There is an application that allows the Minspeak language system to be downloaded onto your home computer. By downloading the program you can then play around with the system and get to know it and understand it before committing to this type of set-up for yourself or your child. Having it accessible on a computer can be helpful for therapists or others who work with your child because it enables them to get to know the system and also gives them a system on which to model language building for the user.

When Carter’s voice output device finally arrived, it would have been icing on the cake if he'd punched the buttons in order to tell us what he’s had on his mind all these years. Unfortunately that was not how things unfolded. Carter has a lot of work ahead of him. There are still significant gaps in his expressive language. At almost eight years old, he is very much like a toddler learning about, experimenting with and building his language skills.

When I explain Carter’s language challenges to those who are interested I like to compare his situation to that of someone trying to learn French or any other language. Learning a new language requires numerous lessons and a lot of practice. Learning to use a voice device with the Minspeak language is no different.

I’m thankful that I took the time to do more research about Minspeak. Carter is extremely motivated by finally having a voice with which to express himself and he is building his language skills one step at a time.

Read More