Category Archives: Communication

Harder than It Looks: Learning to Type on a Letterboard and Keyboard is a Process

Guest Post

by Susan Finnes, with Christopher Finnes

My son Christopher is now 17. He is non-verbal and outwardly behaves in a way which would lead people to believe he lacked intelligence/understanding. The Rapid Prompting Method (RPM) has enabled Chris to show us, through pointing on a letterboard, that he is a creative and intelligent young man.

Ido has been an inspiration to us – his book particularly helped me to understand and to discuss with my son the issues he faces with his motor control/purposeful movement. When people see students like Ido using his iPad independently it is only natural that they aspire to getting their own children to this stage as quickly as possible. There is often a lack of appreciation of the amount of work that may need to be done before getting to that stage.

People say to me, “Why don’t you just get Chris to type straight onto a laptop?”- if only it was that simple! It is important to understand that the amount of time it will take to develop the pointing/typing skills will vary greatly between students and, as Ido has already explained in his book, the belief of the people who surround the student will also have a huge impact on progress.

I am sharing parts of our journey here primarily to help give some more perspective on this skill building process as, for us, it has taken a long time and is still a work-in- progress: — We first saw Soma in 2011 for six RPM sessions (and have seen her each year since then). Chris started pointing on the 3 large stencils and each day we saw how Soma built his skills through verbal and air prompts until he was able to point on the single A-Z stencil. We were also able to observe other students who were at different stages of RPM – some who had more motor challenges than Chris – some were already using iPads. It was clear that everyone had their own rate of progressing.

These first sessions were all a bit of a whirl wind. At the time it was difficult to fully appreciate exactly what Soma was doing and why – as a parent you find your emotions run high and it is hard to detach yourself and analyze what is happening.

It was hard to replicate Soma’s success at home. Chris was ‘all over the place’ – how had he been able to have a conversation with Soma? I had a small team of people working with Chris and we realized that we needed to first build our own skill levels before we could help him to move forward. How did we do this? – by analyzing and studying the videos of the sessions : how did Soma pass the pencil? What angle was she holding the board at? etc, We transcribed word-by- word Soma’s sessions –looking at how she phrased her questions and how she gave verbal prompts. Then we practised, filming ourselves, writing up our sessions in detail and giving each other feedback – continually setting improvement goals for ourselves.

Our learning never stops – constant analysis needs to happen even now as issues are always coming up e.g. Chris may spend time with his hand wandering around the board before getting to the letter he wants. When this happens we need to work out how to help him with the skill of getting straight to the letter.

One aspect of RPM which I feel is particularly important to appreciate is that it works using academics. Learning the skill of accurate pointing on a letterboard would be exhausting and tedious without a context. The teach/ask part of RPM lessons not only provides intellectual stimulation by giving Chris interesting information but also, when he is giving us ‘known’ responses, we can identify his motor challenges and the issues/skills we need to work on. We present a wide variety of age-appropriate topics – history, biology, physics, poetry, current affairs, art.

We also work on the skill of open communication – beginning with single words and gradually increasing to longer outputs. This is another important point – all of Christopher’s most creative and expressive work has been as a result of an academic lesson. There is a skill to this – we don’t just say, “now how do you feel about that?” We instead explore something related to the lesson and maybe discuss it in the third person eg. ‘if you were living in that era and writing a diary entry what would it say?”

– Once we had built up our skill levels on the stencil it was time to push Chris forward onto the laminated letterboard. This was after six months of practise on the stencils – (three sessions a day) and it was gradual transition – sometimes just a few letters on the laminate. At first we held this vertically and gradually began to tilt it. This process will vary greatly with different students -some need lots of ‘mirroring’ from one board to another, others can transition in a few sessions without a lot of help.

When you find a way to hold the board that works for your child at an angle that suits their ability to point accurately and have open communication it would be easy to stop and think you have achieved your goal. However this will always leave the child reliant on a skilled facilitator – I am always looking to move Chris on to the next skill to enable him to eventually become fully independent.

– So five years into our RPM journey Chris is currently pointing quite confidently on the laminated letterboard when it is held nearly horizontally. He can also point on a QWERTY keyboard which is held at a slight angle. He still needs verbal prompting to ‘keep going’ and his tolerance can vary greatly from day to day (he is also affected by some ongoing health issues).

We are working on his independence by mirroring words to either the laminate or keyboard flat on the table or held by him. I have learnt that it is not a great idea to compare Chris’s progress to others – e.g. some students can easily move from one board to another, some have the ability to ‘match’ so can easily touch a letter on the laminate and then on a keyboard. Chris, on the other hand, has to learn this all through muscle memory so requires continual practice and repetition – and lots of verbal/air prompting. I have helped other students to get started with RPM and learnt that every student is different and will progress at their own rate – so there is no rush.

Over the years we have done lots of skill work outside of the RPM academic sessions. I believe that all of these things also contribute to his improving letterboard skills. Skills have included physical exercises (including participation in Special Olympics events), horse riding, playing games, learning to draw, helping around the house.

Everything we teach is focused on helping Chris to move his body purposefully and independently. Each action has to be broken down into small component parts, explained and motor-modeled so his muscles can learn how the movement ‘feels’. Just to explain further , Chris cannot just imitate an action -I have to physically lift his leg, touch his thigh muscles telling him to engage them to show
him how to step over a hurdle. Then we have to practise, practise, practise and practice until he has the muscle memory to enable him to move onto the next skill – running over the hurdles (he can do this now!). I believe it is possible to teach him anything – but it will take longer than for other people.

In a recent discussion with Chris he wrote, “MANY PEOPLE
DO NOT REALISE THE IMPORTANCE OF BUILDING SKILLS. I DIDN’T REALISE THE IMPORTANCE MYSELF UNTIL I BEGAN TO WORK ON THEM. BUILDING SKILLS IN A VARIETY OF WAYS – RUNNING, SPORTS, CRAFTS AND GAMES – IS HELPING ME TO CONTROL MY BODY, LEARN NEW THINGS WHICH BRINGS ME ENJOYMENT AND HELPS ME TO BE ABLE TO BE PART OF THE COMMUNITY.”

Here is a short clip of us discussing skill building in relation to his pointing

IT HAS NOT BEEN EASY. EVERY DAY I HAVE TO PRACTISE.

How do you feel about using the keyboard/ipad?

IT IS HARD TO LEARN NEW SKILLS. I AM SLOWLY IMPROVING BUT IT TAKES A LONG TIME.

What Chris said above I can equally apply to myself. I am constantly learning with him, developing my own skills and know that I still have so much to learn. Some days it seems that the journey is insurmountable – but breaking it into small achievable goals makes it more manageable – one day and one step at a time!

More from The Spectrum of Opportunity Conference, Parent Panel

Here is another great speech from the great Spectrum of Opportunity conference. Hopefully you can get encouraged by Duval Capozzi’s speech. I recently posted his son, Samuel’s speech, and here Sam’s father tells the story of from a father’s point of view. Importantly, he seems to have no interest in regret or in feeling down about the time his son didn’t communicate. Rather, he rejoices in the miracle of his son going from silent and unable to communicate and believing his son had no ability to understand basic concepts, to a son who types his thoughts and is now a freshman with a 4.0 GPA in a university. I hope that many parents take his message to heart and rethink autism.

Good afternoon! My name is Duval Capozzi, I’m Samuel’s dad, and I am in the honored role of being a Dad’s voice! As involved as I have been, I must say—most of these moms, my wife included are “Navy Seal Moms!!”

Samuel’s name means, “asked of God’, and boy, did God answer! He’s been our biggest blessing, and his life has enriched ours in incredible ways. We have delighted in him all the days of his life!

Samuel started to communicate using the letter-board and iPad at the age of 16 ½ in May of 2012. To some that would be late in the game while for others maybe not. Either way, it was perfect timing for us—perfect timing for him. He was so ready; he took off like a rocket! As far as I understand, his response to learning and implementing the method was quicker than most. I’m not sure why, but it was.

A year before that, my wife Kathy started to research and pursue RPM (Rapid Prompting Method) and suggested that we visit Austin, Texas and visit Soma.Now, at first I was very cautious and not as excited as her (tried many things and have spent lots of money on things that gave little results).

So we saved up, got on the list and made the trip in May 2012. Initially, we were hoping to get some novel phrases from Samuel—something that truly came from him, not something memorized. Boy, did we get the shock of our life!

While we were there, Samuel was able to share several personal feelings that we never heard or knew about him, and his communication started taking on a whole new meaning during that week. We were shocked. We are his biggest fans and advocates, yet even we had no real idea of what was going on in our boy’s mind. We knew he was capable of so much more than he was able to articulate or demonstrate, but we had no idea!

We came home and within two weeks, Samuel was spelling out simple conversations, explaining what his faith in God meant to him and that he wanted to get baptized. First things first!

He began asking questions about marriage/girlfriends. Could he learn how to drive? And he wanted a cell phone and Facebook account. We laugh because he was after all a teenager, but this is stuff we had no idea he either understood or cared about. We were continually surprised at what had been hidden inside of him. We sometimes still are. These are things we were resolved to not know…to never hear this side of heaven. Can you imagine our shock? Our joy? Our relief? We could ask him if he was in pain. We could ask him how he felt. We could ask him what he wanted to do, eat etc.!

Our understanding of him, of autism, and how to support meaningful communication with him was so misguided, was so wrong. As you can imagine, our hearts and minds were elated! Our life as we then knew it what was forever changed!

We have homeschooled Samuel since 2nd grade for a number of reasons. As he described, he went from VERY remedial math to pre- algebra from May to August of the same year. My wife sat with him all summer remediating and discovering any gaps that he may have had. In high school he took 3 years of Latin (Why) He said, “Because I want to be a lawyer!” Talk about a shock!

To give you an idea of where we were at this time, we had no idea that he even knew what a lawyer was. I think this is key—key because no matter which direction you go as a parent, educator, therapist or otherwise—just because someone is non-speaking doesn’t mean they are non-thinking. My son taught me that—in a new way—in a life changing way. He told us over and over that, “I was ALWAYS LISTENING.”

He was learning, as he describes as ‘incidentally’ all the time. How we think. How we act. What we expect from our kids and loved ones MATTERS. We won’t speak to our loved ones as if they understand if we don’t believe that they DO understand. We won’t invest in someone if we think they’re not understanding-they are. I hope this is a Take-Away for someone today.

Again, Samuel graduated high school last June and is nearly finished with his first year of college at CSU Channel Islands as a Political Science major. Samuel believes he has a calling in his life to be an advocate for those who have special needs, for those he believes are marginalized and misunderstood. He says “I want to be a voice for the voiceless” —I know what that’s like.

Frankly, for 16 ½ years Samuel was unable to tell us what he really wanted, what he thought, or how he REALLY felt. He didn’t have a voice. He was trapped. Now we can, and do, have deep conversations about life and his future. It’s priceless.

As you can imagine, it has been such a healing time for him and for us. This has made an amazing impact on our son’s quality of life and on our family’s life, and I am so glad I listened to my wife and went to Texas back in 2012.

He still deals with the various trials of having autism, living with a diagnosis of autism is very difficult for most people. But now he can learn and communicate like others even if in a slightly different way.

I truly hope this has helped some of you to understand our son’s journey to meaningful communication. What a joy to be sharing our Samuel and his breakthrough with you today!

*Afterthought- not every person’s response will be exactly as my son’s was. Nonetheless, searching for a reliable means of communication for your loved one is important.

 

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Dillan’s Voice

My good friend, Dillan, is now a movie star and a spokesman for autism! He is helping to educate the world to understand the truth about profound autism. Here are his amazing films.

Way to go Dillan!

Planting Seeds

I receive many letters from people who are not parents of kids with autism but they are relatives or friends of someone who has autism. They have read my book and see the child has the potential to understand, but they cannot influence the parents to change the way they interact with the child or  teach communication. It is painful to read these letters because I know the kid is trying, they are trying, and the parents aren’t ready to hear the message. So they ask me how can they change things.

I wish I knew. The parents or teachers must be open to new ideas. If they’re not, what can one do who has no guardianship? You can treat the child differently yourself, talk to him normally, perhaps even see if the parents will let you introduce a letter board just for practice, but beyond the steps people have told me, it cannot be forced.

I guess one argument to the parents could be, what do you have to lose by trying? Like I’ve written in the past, how is it harmful to read someone an age appropriate book or speak in normal speech tones? This is modeling for people who have never seen their child treated like that.

I know several parents personally who were not open to teaching their kids how to type in the past because they couldn’t see their potential, but after many other kids they knew began typing they started to become more open. They had lots of conversations with other parents and gradually it helped them.

I don’t blame them. They have had lots of professional opinion to overcome as well as confused and conflicted emotions. I guess it’s not always immediate, but you are planting seeds. Hopefully one day they will germinate.

Communication, anxiety and neurological instability.

One of the big complaints of skeptics who refuse to believe nonverbal people with autism can communicate is about support. They have significant doubts if anyone receives tactile support. In fact, if anyone receives tactile support they are sure the communication is fake. I think, to be fair, that sometimes it is hard to tell how much is the autistic person and how much is the aide, just by looking, but sometimes it is quite obvious that the support is just there for emotional support or anxiety control. It is minimal, a light touch far from the hand or arm and totally not prompting movement. My good friend likes a hand on his shoulder when he types. It gives him stability. If someone put a hand on your shoulder could you write accurately in a language you don’t understand but the other person could? I doubt it, but try and see if it’s possible.

But skeptics aren’t even satisfied with independent typing. I type with no tactile support, no prompts at all except for a reminder to keep going or to pay attention if I get distracted or pause too long. Still skeptics are concerned that someone sits a foot away from me and imagine that through some magical means I am typing their thoughts. If I was alone in the room, they say, then they could believe I was really typing my own thoughts.

I am somewhat fed up with this because they do not understand the nature of neurological instability and anxiety in autism. They have an innate bias in believing that autistic minds are not capable of understanding language. If that’s so, why bother to drill us with flashcards?

How many times have nonverbal people emerged from an inability to communicate, often due to a body movement problem, to show that they were hearing and understanding all along but were trapped and unable to show it?

My father, who is a scientist, talked about the unknown impact of emotional support on anxiety and performance and he shared the example of King George in the film, The King’s Speech. King George suffered from a terrible stutter. He was unable to speak in public without stuttering and stammering continuously and with great anxiety and humiliation. Forced to become king when his brother abdicated the throne, George had to overcome his speaking problems to deliver speeches to the British people as Britain entered World War II and to help keep up their morale throughout the war.

His speech therapist, Lionel Logue, was always with him when he spoke to provide emotional support. He never left the room. So, looking at the situation skeptically, should we say that the king lacked the ability to deliver speeches and was Lionel Logue’s puppet? If judged by the same standard as people with autism who type, perhaps we can determine that he was not capable.

Let’s keep an open mind.

My Speech at the Mental Health Advocacy Services Celebration

I am truly honored to be standing here tonight receiving this recognition. I am honored to be here with our District Attorney, Jackie Lacey, too. It is a reminder that advocates can be high school students or politicians, or anyone else. We just need to care deeply about a cause.

As you look at me, some of you must be wondering if I really wrote my speech.
After all, you’ve probably heard that most nonverbal autistic people have low cognition, no insight, no theory of mind, no inner world and poor receptive language.

Guess who told you that? It wasn’t people with autism, that’s for sure.

I have a very misunderstood condition. My disability is caused by my brain’s faulty linkage to my motor system. So truly, I think and understand though I may look like I don’t. Add to that a sensory system that is malfunctioning, and you have an idea how tough it can be.

The truth is, autism itself is easier than the incorrect assumptions by the so-called experts and specialists out there. A locked-in, motor impaired, sensory overwhelmed child cannot escape this on his own. Consequently, few nonverbal autistic people learn to communicate. Experts comfort themselves that we can’t communicate because we don’t understand.

I got fed up with this, because all around me are smart autistic people dying of boredom and loneliness, not able to communicate one idea more sophisticated than a basic need.

My decision at twelve was to speak out and correct this misinformation.

I was denied an education in elementary school because of the expert opinion that an academic curriculum was beyond my intellectual abilities. Now I am an AP student in 12th grade, ready to go to college next year. If my parents had listened to my experts I would still be stagnating in 1+2=3 expectations.

Things are changing gradually. Other autistic typers are speaking out too. We face resistance by people who believe theories over truth. But in time I know that the current paradigm will be discarded, like so many other incorrect theories, and the nonverbal will at last have a voice in their futures.

Thank you.

Scientific Un-Query

I have only met a rare few neuro-researchers and other autism specialists, representing the scientific study of autism, who consult with me for my insights. I have noticed that though more and more of us nonverbal autistic people can type now I have not seen an increase in scientists trying to meet us. My book was sent to many neuro-scientists when it was first published, but few answered, and none met me. The puzzling thing for me is why this is.

If I were a scientist researching autism, or a specialist treating autistic kids, or running a program for autistic students, and nonverbal autistic people who  could communicate by typing began to emerge, I think I’d make an effort to meet them. I understand there are skeptics. I understand there is doubt, but I also know that ignoring things doesn’t change reality. I know that for those skeptics who attack as fake every autistic communicator who appears in the news, that it is also impossible for them to be certain of a person’s skills and abilities without seeing the person.

So many of us now type without any tactile support. Many of us are eager to collaborate and guide research ideas, but only a rare few researchers  ask.

I have three dogs and if they go to the veterinarian with symptoms the vet must guess what is wrong because the dog can’t tell him. Many times we wished the dog could elaborate so the vet wouldn’t need to guess, occasionally incorrectly. Autistic people who are nonverbal have faced guesses too because of their long-time inability to communicate. Now many can explain symptoms but the “vet” doesn’t seem to be interested in asking.

I believe our explanations for our symptoms are important in informing researchers in where to look for answers and how to better educate us.

What explains this un-query?

Out of the Closet

 

Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.

It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.

I know the way to escape this isolation is not to tell sludge tongues and baseball mitt hands to move in ways they can’t. It is to teach those hands to point to letters, to type with one finger and to communicate. There is now a steady tide of people, once thought to be dumb, once thought to need baby lessons and baby talk who are mastering communication on letter board and typing. And voila! Not dumb!

More than anything they find relief being recognized as intelligent. And some find even more; a mission, friendship, a life of meaning. But none will go back into the closet of silence.

I wonder if you are a parent, teacher or professional and you have seen a “dumb” kid prove himself smart, how do you react with other kids? How long should they wait for you?

False (Deprivation of) Hope

By guest blogger, Tracy Kedar

 A few weeks ago my friend’s elderly father was hospitalized. At the time he was confused, agitated and had worrisome physical symptoms. A doctor told my friend that she should place her father in a hospice, that his death was imminent. “What?” she responded, “He was driving just last week!” “Well,” said the doctor abruptly, “he isn’t now.”

Today he is back home, back on his feet, and more active than he has been in months following the correct treatment of his symptoms by a different doctor. “What that doctor did was rob me of my hope for my father. I was crushed by his verdict and he turned out to be completely wrong,” she told me.

How can we fight when we are told something is hopeless? When there is no point in hoping we must be resigned and accept. When Ido was around six a doctor we saw who specialized in autism said that over the next few years it would become obvious whether Ido would be able to improve or would spend his life as a “low functioning” autistic person. This was prior to him having any communication and his true potential was totally unknown to us. She was preparing us to accept the low remedial, low expectations prognosis she saw as inevitable at that point.

 I was thinking about these stories, and so many others, of professionals advising people to abandon what they saw as false hope, and then having their dire predictions turn out to be wrong. These professionals advised false deprivation of hope, in my opinion.

 I have heard a few people suggest that Ido’s book may cause disappointment to parents whose children with autism may not learn to type as he does. Perhaps they believe that people with autism who have the potential to learn how to communicate their ideas are such rare exceptions that it is better if they keep silent and not give parents a chance to dream that their child too might have that capacity. Better to have low expectations, this reasoning goes, than to strive for more and have hopes dashed. Keep expectations low like this and you guarantee disappointment.

 Every autistic person I know who now can express his or her ideas through typing was once thought to be receptive language impaired and low functioning intellectually. No teacher would have looked at them as children and said, “That one will be a fluent eloquent communicator.” That is because their outside appearance belied their inner capacity. Every parent of these children gambled and decided to pursue letterboard and typing without any guarantee of success.

 Since Ido began typing a number of children we know personally also began to get instruction in use of letterboard and typing on an iPad or other assistive technology, either by Soma Mukhopadhyay at halo.org or in another method. And every single one of them has proven themselves able to communicate. Some are more proficient than others, but none had zero capacity. (This is different than rote drills of typing and copying done in many schools. This is specialized training in typing as a form of communication).

 How would it have been compassionate to these children and their parents to lower their hope to the point that they would not even try these methods? Shakespeare said. “Better to have loved and lost than never to have loved at all.” In this case I would change it to, “Better to have tried and not succeeded than never to have tried at all,” because success may very well be the result.

 Ido describes his experience of autism as being trapped in his own body, with a mind that understands and a body that doesn’t obey. Every nonverbal autistic communicator that we know of has expressed the same thing. How many more are waiting to find a way to express their thoughts and receive an education? Diminished expectations helps no one. I do not believe hope in this case is false, but rather, the denial of hope through misunderstanding and low expectations is what is false.

Turning the Titanic

Guest Post
By Tami Barmache
We live in an exciting time! A time when people are starting to think that maybe the children and adults that we were certain were receptively and cognitively challenged are actually bright, literate, capable, and gravely underestimated. As a mom of one of these underestimated children, it certainly feels like change is in the air. The tide is turning!

It may be like turning the Titanic, but maybe once we start to build momentum and inertia takes over, there will actually be a paradigm shift that will change the lives of countless incredible, bright and often misunderstood individuals. We are missing out on so many gifts and insights. If people only knew!

My heart is beating fast just thinking about how I feel every time my son, Dillan, shares his thoughts with me. Everything from simple opinions, to funny stories, and profound insights. It’s life changing for all of us. He feels like his life began when he started to communicate. That’s not an easy thing for a mother to hear, but it’s honest, and I can only imagine how limited his world was when he had no way to express himself. 

Dillan began his journey to communication when he was 10 years old. I fought hard within myself to dig deep and follow through with the practice, but Dillan’s resistance, and mine, often led us astray. We were fortunate to have Tracy and Ido to re-motivate and inspire us along the way. I remember sitting in the park with them one afternoon looking for some words to propel me forward again. Ido told me that “autism is a deep pit…don’t give up.” 
I never gave up. I urged his teachers and therapists to see who he truly was, to raise the bar, to give him the opportunities he deserved. I don’t know if my desperation was apparent from the outside, but inside I was screaming. “Don’t you see????” I showed video of him doing math and writing stories, explained the process, and tried so hard…so hard. But sometimes a journey has it’s pace, no matter your plan. It took several years and the right support in place to finally achieve the daily communication and learning opportunities that Dillan has now.

Today, things are finally moving in the right direction. I must admit that it is taking Dillan a bit longer to become fluid in his typing with me than it has with some others.  That being said, we are getting “our groove” and improving every day. We will have to work together to sort through the pain, frustration and hopelessness that Dillan experienced all of those years, but it’s never too late to find a voice…never too late! 

The documentary “Wretches and Jabberers” features two incredible men who began typing later in life, and I’m sure many other have been able to communicate after years of silence as well. It’s never too late. As parents, there are a lot of intense feelings to face in this process, but none of them compare to their sentence of silence, so we have to take a deep breath, support them, push for them, and celebrate who they are and have always been. It’s painful. But we can do it. We must do it…for them. But we don’t have to do it alone. We can build a community to support each other, and to provide opportunities for learning and practice.

We all need communication. Real communication.

As Larry Bissonnette (from “Wretches and Jabberers”) said so well at a recent event: “Operating pictures on a board brings you cheeseburger, typing lets you create the menu.”