Category Archives: letterboard

Words from the Parent Panel at Spectrum of Opportunity Conference

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.

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?

Challenging and Changing Perspectives

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