Spelling Gives Us A Voice

By Philip

LS writes: 

Hi Philip!

My name is LS and I'm the mother to a wonderful 3.5 year old autistic boy who is nonverbal. I have been reading through your blog for a week or so and love learning from you! 8 months ago we discovered Augmentative and alternative communication (AAC) and bought my son the app "Speak for Yourself". He is doing amazingly communicating with it! He has stunned his school staff and they have been inspired to try to incorporate the app with as many other children in his school as possible. I am so proud of him for showing that a 3 year old can use a robust communication device and shouldn't be limited to one with only a few words, as they previously assumed. He is showing the world what we already knew - that he is a very bright boy with a huge desire to share his thoughts, feelings, and sense of humor with everyone around him.

Philip, my question to you is whether you have had any introduction to high-tech AAC or whether you have friends or classmates who use these devices? My son does love letters and has a keyboard built into the app and I am sure he will love typing someday but right now he is able to use motor planning to remember where approximately 600 words are on his device and we are constantly adding more. I am new to the world of communication for nonverbal people and have been eager to see if anyone who uses RPM also uses AAC devices instead of or in addition to a letterboard or keyboard?

Thank you for your time! I hope you have a wonderful day!

Sincerely,

LS

Philip writes:

My experience with AAC began when I was 6. I started on Go-Talk. It had only a few icons. It was good for requesting but not much else. Then I got an Alt-Chat. It became my voice at school. However I was not able to communicate with it with my family. They did not know how to use it. I kind of tried but I could not express my thoughts with the pictures. I could only make requests for food. I do best with a keyboard. I am able to express myself best making use of a good vocabulary. I am most happy using letters. The words I spell are what I think. Good communication systems let you say what you really mean. The AAC programs are often geared to me making a practiced response. I have to navigate the pages to find what I am looking for. I can't always find the right picture. It makes it harder to communicate for me. At school, I use Proloquo2go. I use some icons for shortcuts like bathroom and break. I like the combination of icons and text. I am for AAC with a text option. At home I use a paper letterboard or iPad with the Assistive Express app. My app allows me to have an actual voice to what I type.

In making my thoughts known I can be free to live my life how I choose because people can understand me. I am peaceful knowing I am free to really speak my mind. I speak to save my Autistic friends from an established philosophy that is not true. Demeaning treatment of Autistic people must stop.  ABA (Applied Behavioral Analysis) treats us like animals to be trained.  The lack of understanding of autism guides the philosophy that Autistics cannot learn normally or make friends.  Autism is not lack of intelligence or empathy. It is mind-body disconnect and sensory differences. Good accommodations are what is needed. Doing the research on Autistic people who communicate should help professionals in the autism field. I think they should meet us to learn from us.  I want to teach others.

Will you listen?

 High-Tech AAC iPad

Low-Tech AAC Letterboard

(made on computer and laminated on card stock for stability)

Copyright 2015 Philip Reyes.  All rights reserved.

Meet Me at My Strength

By Philip

Hello World,

I can let you in my weakness if you meet me at my strength.  I am telling you a school understanding.  When I was at (my old school), I did work poorly because I was treated as dumb.  I am intelligent.  Are there meaningful listeners willing to understand autistics?  Mothers are smarter than most eyes of everyone.  Teachers please me by simply seeing me as smart.  Teachers have a lot to teach me.  On a given day, stores of learning can be imparted.  On a given day, more lessons invite me to understand the sometimes confusing world.  My weaknesses are losing control of my body and emotions.  The answer to helping me is to let me use my strength.  My strengths are my mind and intellect.  I can use my mind to understand behavior and live more meaningfully.  I mean to really try hard to go to regular classes.  I think I can handle it.  I like lots of challenging work.  I want to one day invent something.  I would like to invent electronic letterboards.  Someday someone should do it.  Someday I would like to learn mechanical engineering.  It is math for understanding real kinds of machines.  I love learning.  It makes me giddy with happiness.   

 Philip outside of Baltimore Museum of Art

College Trip

My wish is to follow Ana, not only this week, but to pursue college too someday.  I liked going to help Ana look at schools.  First we went to Chicago to look at Northwestern.  Chicago was cold and it snowed.  I kind of accepted it was like my home in Buffalo.  I mind it some.  Ideally it should be warmer.  Northwestern was teaching engineering in a whole completed way.  They totally get it that one should solve real life problems.  I liked that students were working on a brace for helping someone after having a stroke.  I also liked that someone talked to me about my letterboard.  He was so nice.  He was a student named Alex.  He said he could help make my letterboard electronic.  I was so meaning to tell him how happy I was for him talking to me.  I really liked Northwestern.  I understand I will not be able to be an engineer but I have tons of ideas they can work on.  I want them to give autistics voices.  I understand it will be difficult but kids will be much better off.  I hope he can get it done.  I enjoyed Chicago.  I enjoyed walking to the pizza restaurant.  The food was great.  I liked to wear my warm clothes.  It was so cold.   

   

My time in Baltimore was fun too.  I loved the needed break from the always cold weather.  I liked playing outside to understand the ripeness of spring token to Baltimore.  I played among the pretty trees flowering white blossoms.  I danced along paths of red and grey stones.  I laughed in the sun.  I am happy outside a lot.  I enjoyed learning about Johns Hopkins.  It was a pretty school.  I would not hear about the program because my Dad took me out.  I was being too loud.  Johns Hopkins was mostly tons of students who have no regard for me except one who understood kids like me.  He was the tour kid (guide).  He smiled at me.  The kindly way to make my day is to be understanding and smile kindly.  I had a lovely vacation.    

*Lisa's note:  We had a good week looking at schools for my daughter Ana and exploring Chicago and Baltimore.  Philip really impressed me, especially at Northwestern.  He sat for presentations for about 6 hours and was taking it all in.  At lunch he even talked to Alex, an engineering student, using his letterboard and we presented the idea of making his letterboard into a lightweight keyboard for an ipad that could give voice output.  We are keeping in touch with him and the coordinator of the student design teams to see if they can help us make it a reality.

 

At Johns Hopkins

A Journey of a Thousand Miles

“A journey of a thousand miles begins with a single step.” – Chinese philosopher Lau-Tzu

Yesterday my youngest child Lia, age 8, spent quality time with Philip.  For Christmas she made Philip a “My Life” book for Philip to fill out, kind of like a scrapbook.  We hadn’t started using it, so Lia asked when Philip was going to write in it.  I told her, “Why don’t you interview him?”  Philip, Lia, and I sat at the dining room table while Lia asked Philip questions like, “How did you feel when you were diagnosed with autism?” and “What did you think of your teachers in Miami?”  I held the letterboard for Philip and Lia transcribed his answers in the book.  Afterwards, Philip spelled, “I want Lia to learn to use the letterboard.”

Lia is a great sister.  I told Lia, “You are so good to Philip.  I have never met a kid so patient and easy going as you.”  She replied, “It’s because I have a brother with autism.”  I do believe she is right.  As the youngest, she was the one always chasing after Philip.  When she was a baby, a lot of our attention that would have been slathered on her, was diverted to Philip because he was diagnosed shortly after Lia was born.  Lia’s babyhood and toddlerhood was shared with students and therapists coming to our home to work with Philip.  Sometimes we would let her try a couple trials too.  I remember when Lia was a baby thinking “if all babies could be as good as Lia, I could have a few more.”  She just didn’t seem to have a selfish bone in her.  As she grew up with Philip, sometimes Philip would get into her room and destroy her belongings.  Instead of crying or getting upset, she would often say, “It’s okay.  It’s just a ___.”   Lia has always lived with autism and I believe her character has been shaped positively because of it.  

Before Lia and Philip had their talk time with Lia holding the board, I gave her some hints.  I decided to let her try the letterboard to see if he would spell with her.  Lia asked, “What is your favorite ice cream flavor?”  Philip pointed, e-a-o-i.  This is what he used to do with me when I asked him an open ended question, before he became proficient with spelling with me.  I coached Lia to give him choices, “Do you like V for vanilla or S for strawberry.”  “S” for strawberry, he pointed.  It went on like this for a little while with choices, with some fumbling to redirect Philip’s attention.  Then I challenged Lia to ask Philip a question in which he would have to spell an answer to a question they should both know the answer to.  Lia asked, “What state was I born in?”  I had Lia go back to the stencil and give the pencil to Philip for each letter.  Then I had her scale back to the three stencil boards.  Philip actually chose the right letter most of the time as he spelled, “FLORIDA.”  Finally they were done.

Before bedtime, I called Philip and Lia together for a pep talk.  I told them, “A journey of a thousand miles begins with a single step.  Do you know what that means?”  Lia answered, “You have to start out small to get bigger.”  Philip spelled, “YOU HAVE TO START SOMEWHERE TO GO PLACES.”  I told them both how proud I was of them for beginning to communicate with each other in this way.  I was proud of Lia for her patience and for Philip for focusing so well.  We talked about how no one can go to the Olympics after one lesson.  It will take daily practice for them to get good at talking with each other.  I told them that what it looks like today won’t be how it looks next year or in 5 years.  If they keep practicing, they will be able to have wonderful talks just between the two of them someday.

Lao-Tzu’s Chinese proverb reminds me to exercise my faith each day.  Anxiety fills my mind when I look at the present and base my ideas of the future based only by what I see.  I remember just a short time ago, I believed Philip would never communicate because he could not speak.  I believed I would be changing diapers for the rest of my life.  I thought I should isolate Philip because his behaviors were too disruptive to others.  Today all the kids are home from school because the polar vortex sending temperatures dangerously low.  The temperature outside right now is 0˚F.  There is fluffy clean white snow as far as the eyes can see.  A thousand miles away is Florida where it’s a balmy 70˚F and sunny.  Palm trees are swaying on beautiful sandy beaches.  It’s hard to imagine that in the future Philip could be as different as Florida is to Buffalo.  But it is possible.  I think of how far Philip has come in just this past year.  It is incredible!  All the things I mentioned above that I believed have all been proven false!  The future is an open book but it is our job to determine what we will write.  Will we map our journey with shortsightedness or with eyes of faith?

*I read the post to Lia and Philip for their approval.  Lia said, "It is fantastic."  Philip spelled, "I AM EAGER TO GO TO FLORIDA."

 Philip and Lia