Category Archives: typing

Words from the Parent Panel at Spectrum of Opportunity Conference

Posted on March 23, 2016 | 3 comments

Here is another speech from the Spectrum of Opportunity conference at Cal Lutheran University. This is a speech from the parent panel. My good friend’s mother, Barbara Johnson, had the courage to tell her story. Her son was with me in remedial autism class when we were small and no one knew how much was inside. I am happy to say he is at last able to express his thoughts. His story tells parents to not give up, even if your kid has grown to adulthood.

Good afternoon.  My name is Barbara Johnson and I have the
privilege of being the mother of two sons, Chad and Connor Johnson,
both of whom have autism.  My son, Chad, is the focus of my speaking
today however, because he is typing with a keyboard and his IPad
utilizing the Proloquo voice feedback word program for communication
and academics.

I was asked to speak today because Chad basically started typing
meaningful communication and academics at 18 years old. He is now
20.  Chad did began typing earlier with me and with his home therapy
program provided by Verdugo Hills Autism Project using an Alpha
Smart keyboard,  but most of the typing consisted of nouns– usually
what we were having for dinner, or his name, address and phone
number.  He did not progress much from there, because looking back
now I believe we were not emphasizing the typing enough.

Chad had been using PECS most of his time at home and in
school because it seemed to be the only form of communication other
than verbal that appeared to connect with him and what he also
initiated with.  He tried typing and sign language when he was very
young, but these forms of communication at the time did not seem to
register well.  I truly believed they did not make sense to him.

I was informed by the experts, that Chad had severe receptive language
difficulties and that was the reason why he would not always respond
correctly to ABA drills or requests I made of him.  The many books
and articles I researched only backed up this theory.  It was described
to me with the analogy of a radio receiving static, sometimes the
message comes through, and sometimes it doesn’t.  I have never
doubted Chad’s intelligence, and I have always known he is extremely
bright.

If only I had realized Chad’s body was not responding to what his
brain was telling him to do, this theory of receptive language problems
would not have shaped how I pursued his education and therapy.
What is so ironic and upsetting is that a great deal of Chad’s learning
had been and continues to be auditory; he has understood everything
all along.  The experts were wrong, I was wrong.

I have dear friends in Tami Barmache and Tracy Kedar who
encouraged me to pursue the typing communication with Chad.  I still
had my doubts because of past experience, but I started to inquire
more.  The pivotal moment for me that changed my perspective was
speaking directly with Ido Kedar.  Chad and Ido have been friends
since they were about 6 years old. They both met in an autism class in
elementary school.   I was talking and crying to Tami and Tracy about
pursuing the typing and I was feeling like I had failed Chad and had him
on the wrong path for years.  Ido approached and typed on a letter
board to me that I was a very good mother to Chad and I had been
given the wrong information, that is was not my fault.  Well, I totally
broke down after that, but it changed things forever for me and for
Chad.

The meaningful typing initially started at school with the assistance
of Verdugo Hill’s BID, Cheryl Umali and BII, Jim Rodehaver.  Chad
has used the letter board and IPad, but he prefers the IPad because
he can see what he is typing and can also utilize the word bank.  He
required a great deal of support in the beginning, but over time the
support has greatly diminished. Tracy Kedar also worked with Chad using the letter board to teach him to point independently without being touched.  This helped Chad have more ease with the keyboard with less support.  Chad also
receives communication therapy once a week through REACH with
Katie Anawalt and Lindsey Goodrich.

For the first time Chad is fully included in general education in high school.  He is on an alternate curriculum. However, so far he has not had modifications in the academics, only accommodations for his typing and additional time requirements.

Chad was previously in the autism class for almost his entire
education, mainstreaming only for electives or going to a vocational
campus for a job skills program for a couple of periods during the day.
Ever since Chad started the academic general education curriculum
this last August, his writing has greatly improved surprising everyone
around him.

I have tried to encourage other parents to investigate typing for their
children because it has been life changing for our family.  For the first
time, my husband Chris and I are hearing Chad’s voice and his
opinions.  We do not have to guess anymore what he wants, we can
ask him and he can reply.  Many parents have conveyed to me that
Chad, Ido and Dillan are exceptional and their child cannot do the
same.  Every child with autism is exceptional because they are the
bravest souls I have ever met, but Chad, Ido and Dillan are no
different from your children, students, or clients.  Other people with
autism can also be successful using typing communication; they just
have to be exposed to the same opportunities. Most of all, you have to
believe in their intelligence, perceptiveness, understanding of
language, concepts, and emotions. Do not let their physicality get in
the way of you believing in them.

In closing I am going to read something Chad wrote in his government
class that I believe says it all.

A cause that is very important that I think of is the rights of people
without voices.  I have autism and I don’t talk.  That makes it hard for
people to know I can think and learn.  So I and other do not get true
education.  We cannot help ourselves to speak up.  But we
deserve a fair chance to learn real knowledge.

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Posted in autism, California Lutheran University, keyboards, letterboard, mainstreaming, typing

Out of the Closet

Posted on June 23, 2014 | 14 comments

 

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?

14 Comments

Posted in "low-functioning" autism, ABA, apraxia, autism education, autism theories, autism treatments, Communication, letterboard, mind/body communication, motor planning, non-verbal autism, typing

A Challenge to Autism Professionals

Posted on February 16, 2014 | 38 comments


The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.
Whew. When I write that it sounds pretty bad, but I function adequately in this world. I am now 17 and I am a fulltime high school student in a general education program. I am in Honors Chemistry, Honors US History and Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight As. I work out with a trainer 2 or 3 times a week to get fit. I study piano. I hike, cook, and help take care of a horse. I am invited to speak at universities and autism agencies. I am the author of Ido in Autismland, and a blogger as well. I have friends.
I say this, not to brag, but to let you know that people like me, with severe autism, who act weirdly and who can’t speak, are not less human, as Dr. Lovaas suggested, and are not doomed to live lives of rudimentary information and bored isolation.( “You have a person in a physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense,” the late Ivar Lovaas, a UCLA researcher, said in a 1974 interview with Psychology Today).

I communicate by typing on an iPad with an app that has both word prediction and voice output. I also  communicate by using good, old-fashioned letterboard pointing. If I had not been taught to point to letters or to type without tactile support, many people would never have realized that my mind was intact.
My childhood was not easy because I had no means to communicate at all, despite my 40 hours a week of intensive ABA therapy. I pointed to flashcards and I touched my nose, but I had no means to convey that I thought deeply, understood everything, but was locked internally. Meticulously collected data showed my incorrect answers to flashcard drills, but the limitations of theory are in the interpretations.
My mistakes were proof to my instructors of my lack of comprehension or intelligence, so we did the same boring, baby lessons year after boring year. How I dreamed of being able to communicate the truth then to my instructors and my family too, but I had no way to express my ideas. All they gave me was the ability to request foods and basic needs.
Here is what I would have told them if I could have when I was small. My body isn’t under my mind’s complete control. I know the right answer to these thrilling flashcards, unfortunately my hand isn’t fully under my control either. My body is often ignoring my thoughts. I look at my flashcards. You ask me to touch ‘tree,’ for example, and though I can clearly differentiate between tree, house, boy and whatever cards you have arrayed, my hand doesn’t consistently obey me. My mind is screaming, “Don’t touch house!” It goes to house. Your notes say, “Ido is frustrated in session today.” Yes, frustration often occurs when you can’t show your intelligence and neurological forces impede communication between mind and body and experts then conclude that you are not cognitively processing human speech.
In my childhood I feared I would remain stuck forever in this horrible trap, but I was truly fortunate to be freed when I was 7 when my mother realized my mind was intact, and both my parents searched to find a way to help me communicate without tactile support.
Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.

38 Comments

Posted in ABA, autism, autism perceptions, autism theories, Ido in Autismland, Ivar Lovaas, mind/body communication, potential, Tito Mukhopadhyay. nonverbal autism, typing

Challenging and Changing Perspectives

Posted on January 28, 2014 | 1 comment
By Edlyn Pena, guest blogger
As a researcher who studies ways to support the access and success of students with autism in higher education and a mom to a handsome six-year old son who uses an iPad to communicate, I aim to help Ido advance his message to educators, professionals, and caregivers. My objective here is to provide context and encourage you to learn more about approaches that enable nonverbal individuals to spell and type to communicate. I’ve received criticism for endorsing approaches like Rapid Prompting Method (RPM) because they are not evidence-based. There is still much speculation in the autism community about the legitimacy of RPM and other approaches that teach pointing to letters and typing. Research on these methods are lacking. I understand that professionals will continue to question these methods until they are rigorously studied and published in peer reviewed journals. I am the first to believe in well-designed research studies. As an academic, I also believe in being open to new possibilities, ideas, and presuming competence in individuals on the spectrum. Without this openness, I would have never exposed my own son, Diego, to RPM. He would not be where he is today with regard to sharing how autism affects him daily (e.g. “Paying attention is tiring”) and to articulating unusual ideas (e.g. “Eight elephants play in a new kind of ecosystem”). I would not know the level of depth of thought and curiosity hidden in his mind. Diego’s voice is now being heard.

Ido is a pioneer in advancing our knowledge about autism and people with complex communication challenges. Ido’s book, Ido in Autismland, is by far the most powerful book I have read about autism. Other authors write compelling books about autism, prompting us to think about those on the autism spectrum. But Ido is different. He is extraordinary because he changes the way we think about autism. He disrupts our misguided notions that lack of speech equates to lack of intelligence; that students with autism are impoverished of expressing or recognizing emotions; and that all students who are non-verbal belong in special day classes without the opportunity for inclusion. Contrary to many of the messages the world receives on a daily basis about people with autism, Ido’s book tells us that the minds of people with autism are as complex, creative, and intelligent as yours and mine.

On a personal level, reading Ido’s book was transformative and allowed my relationship with my son to turn a corner. I now talk to Diego like I would any other smart and capable 6-year-old. I make efforts to talk to Diego, not about him, when he’s in the room. Ido, Diego, and children like them are nonverbal, affected by autism, and brilliant. By typing to communicate, they blow us away with their complex insights, imaginative ideas, and witty humor.

If you are a professional in the autism field, I invite you to think outside of the box about what “conventional wisdom” on autism tells us. Without doubt, this takes courage. It means acknowledging that we do not know everything about autism. You might learn, as I did, that our perceptions about the capabilities of non-verbal individuals are wrong. Rather than dismiss RPM or other approaches to support typing, I encourage you to educate yourself about the approaches. Interact with individuals who have learned to type. Read Ido’s book or watch videos of children and teenagers who point to letter boards or type independently. For example,

https://www.youtube.com/watch?v=Wvn7kYJyOFM

And, of course, Ido has posted great video clips of him typing on this website. For example,

https://www.youtube.com/watch?v=ZLtQWXdDCFo

From one professional to another and from one parent to another, I urge you to take a chance to learn more before dismissing approaches to support our children who otherwise have limited means to communicate. We have the power to make real change by enabling the individuals we care for and serve to communicate in rich and meaningful ways.

-Edlyn Vallejo Peña, Ph.D.

www.EdlynPena.com
Assistant Professor
Graduate School of Education California Lutheran University

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Posted in autism, autism research, Edlyn Pena PhD., Ido in Autismland, Ido Kedar, letterboard, nonverbal autism, Rapid Prompting Method, RPM, typing

False (Deprivation of) Hope

Posted on December 31, 2013 | 5 comments

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.

5 Comments

Posted in "low-functioning" autism, autism, Communication, false hope, hope, iPad, letterboards, typing

Turning the Titanic

Posted on December 20, 2013 | Leave a comment

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.”

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Posted in autism, Communication, Larry Bissonette, non-verbal autism, Tami Barmache, typing, Wretches and Jabberers

Typing on my iPad

Posted on April 29, 2012 | Leave a comment

Here I am on my iPad.  I am still getting used to it.  It is still slow compared tomy letterboard, but it is getting better.  I talk about Shakespeare for homework in one clip, and I just chat in the next.

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Posted in assistive chat, assistive technology, autism, iPad, non-verbal autism, non-verbal communication, typing