Tuesday, January 28, 2014

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

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