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

Hanging Out With The Real Boys

A wonderful thing has been happening to Philip.  He is making friends with people like himself.  Most of us enjoy the benefits of friendship quite easily.  Although we can make friends with people very different from ourselves, we tend to drift towards people we have something in common with, like those who like to read joining a book club, or moms with kids on the same sports team yakking it up on the sidelines.  Put me in a room with another mother of an autistic child, and I will find her like a magnet.  In the neurotypical world there is no shortage in finding “like” people.   Bonding over our commonness, be it interests, background, or outlook on life, is the stuff best friendships and soul mates are made of. 

Philip has told me on several occasions he is lonely.  You wouldn’t think it could be possible with 3 siblings, parents, aunts and uncles, cousins, his Lolo and Lola (grandparents), and church family doting over him.  But the more I think about it, the more I can understand how lonely it must be to not have someone who can truly relate to his autistic experience.  As much as we love Philip and can empathize with him, we cannot say to him, “I’ve been there.”

Non-speaking autistics have it especially hard in making friends with others like themselves for obvious reasons- the communication piece.  In ABA school, Philip was taught to communicate with his other non-speaking peers in a rote manner of pressing  icons on his device which would speak, “Hi, I’m Philip,” “What’s your name?”, “I am 10 years old,” and “I am _____ (fill in the blank with happy, sad, angry, etc.) There were not enough icons on his device to have a true conversation to explain your inner thoughts and why you felt a certain way.  No “I am lonely” button existed.  Teaching Philip to communicate by spelling on a letterboard through RPM was a process that took time to learn and make proficient for communicating.  But once he got it, it has opened his world and opportunity for expression wide open. Unfortunately, open forms of communication such as RPM and assistive typing are not commonly learned and used by most autistics whom it would benefit.  This is because certain ideologies still have a monopoly on those who provide education and services to most autistic people.

By a stroke of good fortune (divine intervention I'm sure) and Facebook, Philip has been able to find other non-speaking kids who communicate by letterboard or typing.  One boy Philip has befriended is Josiah.  He is 8 and from Minnesota.  The boys exchange messages over Facebook.  The depth of their letters is astounding.  I will most likely devote a separate post to this beautiful friendship soon.  

        

Another boy Philip has befriended is Michael Conti.  I have written about their first meeting communicating with each other back in the summer here.  Michael is 14 and was our catalyst for seeing Soma after meeting him and his mom Susan at a Lose the Training Wheels bike camp in the summer of 2012.  Michael and Susan are the original RPM trailblazers in our area.  Philip and I are just following in their path.  Michael goes to public middle school, excels in his core academic subjects with typical classmates, and even participates in track and stage crew.  Don’t forget- he is non-speaking, just like Philip.        

Since last summer, Philip has improved in his ability to communicate.  Susan and I decided to make what I have termed ‘playdates’ (as you will see, we will be persuaded to change the name in the end) more regular.  As Monday was the MLK holiday, we made our first date at Susan’s house.  I brought Philip’s iPad to show them how Philip has started typing a little.  When we first arrived both boys sat at the table with their iPads and some snacks.  Philip is still shadowing his responses from letterboard to iPad while Michael types on a little hand-held bluetooth keyboard which his mom holds up for him.

Philip began:  Are you typing pretty well?

Michael (as I recall- may not be exact wording):  Not so much.

(As I watched Michael, he was quickly and independently typing both on his Bluetooth and ipad to google videos and search for various things on the internet.  Susan explained he was very good at typing automatics, kind of like stim-words, by himself, but still needed improvement in staying focused in using typing to communicate purposefully.)

P:  I plan to look good for school and typing pleases people.  

The boys didn’t stay at the table too long.  As moms do, Susan and I got to talking.  We talked about everything from typing, videos to help with technique, conferences, schools, and inclusion.   The boys wandered into the family room to lounge amidst the couches, blankets, and bean bags.  We eventually let them communicate there with their letterboards.  Here are more snippets of the conversation:

M: What is your favorite subject?

P:  Math.  What is your favorite interest?

M: Certain technology.

P:  Do you get teased at school? 

(Susan and I both remarked what a good question that was.  Philip’s thought about teasing could greatly affect his anxiety about going to public school.)

M:  No because actually I am popular at school.  They know I am smart like you are. 

(Susan asked Michael some clarifying questions to show Philip he would be accepted there as well.)

P:  I am really happy I am feeling good about mainstreaming.

As Susan and I scheduled the next playdate, I wondered out loud, “Maybe they are too old to be having a playdate.  What should we call it?”  Susan said, “Why don’t we ask them?”

P:  Each time we are hanging out.

M:  Real Boys 2 

Susan mentioned she has met several parents like us at different conferences and there is a small group of families in Maryland who bring their boys together weekly to communicate like Philip and Michael.  They call themselves “Real Boys.”

I like the sound of it- Real Boys hanging out.

Tonight at bedtime I asked Philip about his impressions of the day.  He spelled, “I like Michael.  He is teaching me I should be excited for mainstream school.  You (Mom) are getting certified in autism kids daring to save the reaching-out world."      

*  Susan and Michael have given me permission to use their names to blog about today.  Michael spelled he "wants to be famous haha."  Gotta love this kid! 

 Philip's friend Michael

Philip getting better at typing

            

 

I Have A Dream

Inspired by Dr. Martin Luther King Jr., Philip wrote his own "I Have A Dream Speech."

I Have A Dream
I have a dream that various languages would be recognized and each celebrated for its prime ability to give people a voice. Are understanding and your speech the same?  Each day I better myself by spelling my thoughts on a letterboard. I am each day trying new things. I dream of each day learning new things in an understanding world.  I dream of schools looking out for each person's best potential. I hate prejudice. It cons people into thinking they are better than others. Each day I am dreaming you treat us autistics with respect. In my dream you see us like you see yourself. I have a dream.

            

Changing Schools

This past week, after many months of Philip telling me he wanted to go to a regular school, I notified my school district that we want Philip enrolled in public school as soon as he can.  We also informed his ABA school that we are making a change.

Quite simply, I can justify this switch by a Michael J. Fox quote I saw on Facebook a few months back.

                             

Philip has had an ABA based education since he was 2 and a half.  Applied Behavioral Analysis or ABA is “the application of operant and classical conditioning that modifies human behaviors, especially as part of a learning or treatment process. Behavior analysts focus on the observable relationship of behavior to the environment, including antecedents and consequences.”  For Philip, this method of learning involved breaking information and skills into bite size morsels that were repeated over and over.  A reward, usually an edible, was given for correct responses.  Data was collected and a student was said to have mastered a skill after answering correctly 8 out of 10 times, over a span of time.  A student could not advance to a harder skill until mastery of a prerequisite skill.  We initially picked ABA because it is considered the “gold standard” of autism treatment.  Because there are scientific papers backing it, ABA has a favored status among all other therapies.  But I do wonder how the researchers chose their subjects.  Did they exclude non-speaking kids?  How old were they?  I suppose I could dig up these articles, but I haven’t the time because we have found something that actually works for Philip: rapid prompting method or RPM. 

  

I think ABA was wonderful for Philip when he was between 2-4.  His teachers were caring and enthusiastic.  In the beginning Philip showed good progress.  Through ABA he said his first words and even “I want.”  He learned to identify everything- objects, letters, numbers, colors, shapes, actions.  Because he did so well in the first year, we thought he might even “recover.”  However, by the time Philip was around 4, we saw a leveling off in Philip’s acquisition of new skills.  He just could not use his spoken words for anything other than requesting food or something highly motivating like “swing.”  We also saw that he was no longer enjoying his sessions with his favorite home teacher, Amanda.  We tried to get her to try floortime to vary it up, but nothing seemed to work.  When we moved from Miami to Buffalo, Philip enrolled in a highly reputable ABA school.  However, he did not progress much.  In fact, his verbal ability seemed to decrease.  This year his IEP goals were many of the same in years previous- identifying coins and a set of sight words.  How could it be that at home, Philip could add, multiply, reduce fractions, attend to advanced lessons in history and science, read quizzes and answer correctly, and write essays, yet at school he could not master his preschool level programs?     

I now believe ABA was good in Philip’s preschool years because in many ways, “normal” preschoolers are taught in a similar way.  For the most part, preschoolers are concrete in their thinking  and can easily be motivated by outside, tangible rewards.  A preschool classroom, minus the excess art on the walls, can look very similar to an ABA classroom for any age with its manipulatives, puzzles, flashcards, and picture schedules.  But after preschool, education for the normal child switches gears to literacy, learning concepts, and problem solving.  For Philip, he remained stuck in perpetual preschool because he could not demonstrate what he knew in the way his teachers asked of him.  His mind was maturing normally and he hungered for new things to learn, but his inability to speak and his lack of body control betrayed his mind, making him appear to be at a developmental level of a toddler even though he was not.    

There are fundamental differences between ABA and RPM.  The first difference is in what you teach.  In ABA, teaching is based on concrete information presented piecemeal, in a rote, repetitive manner.  In RPM, teaching is the same as for any child of the same age.  Concepts and reasoning are emphasized over drilling.  In ABA, using pictures is the preferred way of delivering lessons via flashcards and also for communicating.  In RPM, the use of text based language is the preferred way of teaching and communicating.  In ABA, an external reinforcer is used to motivate learning.  In RPM, the reward is learning itself and intrinsic.  In ABA, prompts are used to provide “errorless” teaching.  Often a hand-over-hand prompt will be used to lead the person to the correct response which is then gradually faded so the person can do it himself.  In RPM, prompts are used to help a person initiate a response, whether it is correct or not.  An incorrect response is dealt with by teaching the child again.  Prompts in RPM are multisensory.  They include handing the person a pencil as a touch prompt, a verbal prompt such as “you got it,” or a visual prompt which may be a shake of the letterboard.  Lastly, ABA presumes an autistic individual must be taught in baby-steps.  RPM presumes the same person is intelligent, but needs support to help show what he knows.     

           

Philip is ready to leave his special segregated school for a regular integrated school where he can learn like his neurotypical brother and sisters.  RPM has finally given Philip a way to demonstrate what he knows by spelling on a letterboard.  We are working hard for Philip to learn independent typing too.  We want Philip to have the best chance to be part of mainstream society, to contribute, and to feel a sense of worth and happiness.  Mostly we want to support Philip’s own desires and strengths.  And this is what he says:

“I want to go to a regular school.  I want to learn everything there is to learn.  I want to achieve typing.  (My strengths are) talking on letterboard, understanding math, and independent thinking.  I am smart.  Each day I will help others.  One day I will surprise a lot of people.”    

Daring

I get a kick out of Philip’s use of words.  A boy of few words, he carefully chooses each one to extract the most meaning out of it.  A week ago I wrote a post here about Philip giving titles to my Dad’s photographs.  As a follow-up, I asked Philip how he came up with the titles.  He spelled, “I ATTRIBUTE A TITLE THAT SUMS A LESSON.”  Yesterday my Dad won a gold award (the highest honor) for his photograph which Philip named “CATCHING LIGHT OPULENCE.”   I asked Philip why he chose the name.  “I LIKE HOW THE LIGHT SHINES TO ACCENT THE BEES AND THE OPENNESS OF THE FLOWER IS EASY TO ENJOY.”  Why opulence, I asked.  He spelled, “VIOLET ROYALTY.”

"Catching Light Opulence"

One word Philip has become particularly fond of using is “daring.”  The meaning of daring is “willing to take or seek out risks; bold and venturesome.”  I’ve been thinking about this word today and how it is related to hope.  Hope is the dream we have, but daring is the action that allows us to realize the dream.  Over the past year, RPM has given Philip a voice, and along with that, freedom to dream.  He wants to go to a regular school and says “I WANT TO LEARN EVERYTHING THERE IS TO LEARN.”  He says he wants to be a mathematician when he grows up.  He wants to learn typing and computer skills.  He also wants to write his story and teach others who cannot speak to communicate through RPM.  Photography has piqued his interest and he wants to try his hand on a camera and accompany my Dad on photo shoots.  

The power to dream is an amazing thing.  It gives us a purpose to live for.  It gives us positive momentum to wake up every day with the expectation we can improve ourselves and the world.   For me, this was not always so.  When Philip was between the ages of 6 and 9, I had such a hopeless feeling about Philip and my life that many times I dreaded the morning knowing each day would be like the last without reason to think things would get any better.  How much harder was it for Philip?  Hope is where all dreams find their beginning.

Daring is each step we take in making our dreams come true.  When a child is autistic and cannot communicate, he has to rely on others to dream big enough for him too or else his own dream cannot be realized.  Daring to see Soma was the best thing we ever did to help Philip.  With no indication that Philip could read, spell, communicate, or even understand much, we went to see if she could teach us how to reach Philip.  And she did!  Philip learned to learn age level academics and answer questions about himself.  When we got home, Philip would not communicate as he did with Soma for months but we dared to persevere until he could.  Little acts of daring such as pushing for a sentence rather than a single word, letting Philip speak on his letterboard to others, or enrolling him in activities with inclusion, snowballed into bigger things.  We didn’t always achieve things on our timing and sometimes a dare was met with a fail, but within the whole process was progress.  Looking back, each breakthrough has been a result of daring a fear or the status quo.

I want Philip to keep daring himself to accomplish his dreams.  This is not easy for him.  Often he feels discouraged about things, whether it is his inability to overcome his own sense of overwhelm during stressful situations or not receiving adequate accommodations to help him communicate out in public.  I keep reminding him that many of his heroes, Frederick Douglass, Abraham Lincoln, and Martin Luther King Jr., did not have it easy.  To achieve their goals, they had to defy odds against them and in doing so, made a huge impact on the world for good.

I look at the growing number of non-speaking Autistics succeeding and living out their dreams as well.  What do they all have in common?  They have all dared the common perceptions of autism.  They have all dared to find ways to communicate that are out of the box.  They all had people to dare to dream alongside them.  Tito Mukhopadhyay and Ido Kedar are accomplished writers and speakers (how amazing is that!) who learned from Soma.  Kedar currently attends mainstream high school.  Naoki Higashida was homeschooled and learned communication via letterboard and typing.  He is an artist and has written bestsellers in Japan and the US (The Reason I Jump).  Carly Fleischmann types and now attends college.  Larry Bissonette and Tracy Thresher travel the world as speakers (by typing) and advocates and have made a fabulous movie called Wretches and Jabberers.  There are many others daring their schools and communities to accept them, working jobs to support themselves, and defying people’s expectations.  

I leave you with Philip’s statement to me this morning after reviewing the post: “I AM DARING TO BE MYSELF IN THE WORLD.”  How about you?  Do you dare?   

 Philip with Soma