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

Personality and Patience

I really enjoy the book Ido in Autismland, a collection of essays written by Ido Kedar, a non-verbal autistic boy who wrote about his experience of being autistic between the ages of 12-15.  It was the first book I read that resonated with how I felt my son to be like.  Ido got his start in communication through Soma’s RPM.  I have since bought many copies of the book to give to family and friends so they could understand Philip better.

In August, my in-laws came to visit from Albuquerque, New Mexico.  They both read the book while they were here.  After my father-in-law read Ido’s essay  “Trust, Aura, and Communication” he wondered if Philip also sensed people’s auras.  In the book, Ido talks about how people give off a colored glow which, depending on the color, causes him to be either relaxed or tense.  This, in turn, affects his ability to point and communicate with people with his letterboard.  When he is relaxed, he is better able to communicate.

I decided to ask Philip about this.  I didn’t bring up auras, but instead asked him if different colors could be used to explain certain personalities.  “Y,” he answered.  Together we came up with a list of colors and corresponding personalities and people who might fit that color.  Philip’s responses are in CAPS.

Red: ANGRY

Blue: CALM- MOM, ANA, SOMA, NELSON

Yellow: EASY GOING- CARLOS, LIA, ME (Philip)

Orange: FRIENDLY- GRAMS, TOMMY, KIANNE

Green: ENVIOUS “Who’s green?” I asked.  ANY PERSON.  “You mean any person at some time can be green?”  Y

Purple: ROYAL- LOLA, DAD “Why would you say they are purple?” I asked.  THEY ARE IN CHARGE.

I’ve since noticed the connection between the “blue” personality and Philip’s ability to spell well with them.  One time my older two kids Ana and Carlos were sitting with Philip at our table while I held the board as they talked with Philip. Ana asked, “Why can you only spell with Mom holding the letterboard?” “SHE IS PATIENT,” spelled Philip.  “If I practice with you, would you be able to spell with me too?” Ana asked.  “Y.”  “What about me?” asked Carlos. “N,” answered Philip.  Just so you know, Carlos is not known for being patient.  However, since that conversation in August, I have noticed Carlos becoming more patient and bonded to Philip.  I believe it is because Philip has gotten better in communicating.  It would be interesting to see if Philip still feels the same way.

Though some people are more naturally patient than others, I think everyone can cultivate this quality.  Here is a case in point.  I have two friends, Nichole and Debbie.  To me they are very orange and outspoken.  In fact neither would call themselves calm or patient.  However, they have always paid special attention to Philip and treated him as a regular kid.  When I told them about Philip’s color-personality link, they excitedly wanted to know what color they were.  For each one, Philip spelled “BLUE.” We determined it was because they were patient with him and he felt calm around them.

Today I asked Philip if we could talk about patience.  “Y.”  I read to him some definitions of patience in the dictionary.  Then I asked him how he would define patience.  “STAYING CALM IN A DIFFICULTY,” he replied.  “Why is patience important?” “PATIENCE IS IMPORTANT TO HELP PEOPLE ATTEND TO NEEDED TEACHING.” “What happens if someone is not patient?” I asked.  “I WILL STOP TRYING.”

As I think of my experiences as a parent to all my kids, it strikes me how important being patient is.  Just last week, I remember using an annoyed voice with Carlos to take out the trash.  It didn’t do anyone well.  “I’ll do it at the commercial,” he replied in a sluggish, equally annoyed voice.  A half hour later, I had to remind him again.  This shouldn’t surprise me.  Even I do not want to listen to someone who is impatient with me.

When we realize just how hard it is for our autistic kids to communicate, it should make us want to be more patient.  I like reading Philip the encouraging responses we get from our blog.  Today we got an email from a mom in Maryland thanking Philip for sharing his story and helping her son more than he knows.  Philip had this advice for her son: ADDRESS COMMUNICATION.  IT IS HARD WORK BUT A SO NEEDED GOAL.  

We have to remember, not only do we have to be patient for ourselves, we have to model it so our kids can be patient with themselves.  As difficult as our journey is as a parent, theirs is exponentially greater.   

I leave you with these quotes I like about patience.

Learn the art of patience.  Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure.  Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success. –Brian Adams (author)

Our patience will achieve more than our force.  –Edmund Burke

Love is patient.  Love is kind.  -1 Corinthians 13:4

  Albuquerque, NM

Stories That Matter Most

I am looking forward to receiving a new book in the mail soon called The Reason I Jump by Naoki Higashida.  A fascinating excerpt from the book can be read in Parade magazine here.  I first learned of Higashida from the wonderful film Wretches and Jabberers.  You can see the trailer here.  The Reason I Jump was written by a Japanese autistic boy when he was 13.  It has only recently been translated to Engilsh by KA Yoshida and David Mitchell, a husband and wife with an autistic son of their own (Higashida is now in his 20s).  According to early reviews, this book was eloquently and painstakingly written letter by letter on a letterboard, much like the one Philip uses.  (Higashida now types and can even read back verbally what he has written).  The book answers 50 questions about autism such as "why do you jump?" and explodes common views about autism, such as autistics are not interested in people, they do not understand feelings, and they are lost in their own world.  Society has come up with a misguided view of autism largely based on fictional accounts like Rain Man and from the medical establishment (DSM criteria).  It has been hard to get a first-hand account of what autism is like because of the communication problems caused by neurology.  However, in recent years I have started to see non-verbal autistic voices more and more.  The book Ido in Autismland is my favorite to date.  Ido got his start with Soma and has written a collection of essays that deeply resonate with what I believe Philip experiences similarly.  Tito Mukhopadhyay has also written about his life and his perceptions through beautiful poetry.  These autistic voices (who speak through the written language rather than spoken) have shattered my preconceived notions of what autism is. 

Of course now I have my own son to tell me what autism is like.  Philip is only 10 and has been communicating just a short time, so he is not yet as eloquent as Ido, Tito, or Naoki.  But even so, he has been amazing me with his story.  The more I discover who Philip is, the more I realize how wrong my perceptions of him were in the past.

Philip actually wants to talk about autism.  A couple days ago, I was ready to teach Philip a lesson from Brain Pop.  I asked him what animal he would like to learn about.  Instead of choosing, Philip became upset and started to cry and hit his head.  I didn’t know why.  After awhile he calmed down and I asked, “Why were you upset?”  He answered, “I KEEP SAYING I NEED TO TALK ABOUT MY AUTISM.”

So we started the conversation, which also lead me to the idea of having Philip co-blog with me. 

 

Lisa (me): What do you want to talk about?

P: STIMS

L: What can you tell me about stims?

P: A LOT OF STIMS ARE NEEDED TO CONTROL THE AKING (aching).  OFTEN I AM NEEDING STRESS RELIEF.

L: What kind of stress do you have?

P: STRESS CAUSED BY EVERY SOUND.

L: What else can you tell me about stims?

P: A LOT OF STIMS ARE TIME CONSUMING.  I LIKE TO KILL TIME BY WALKING AND THINKING.

L: What do you think about?

P: I THINK ABOUT ANYTHING

L: What are some things you think about?

P: AS YOU ASK I AM EYEING A HAPPY FUTURE.

L: What do you see in your future?

P: I AM TALKING

L: How?  With your voice?  Typing?

P: WITH A PERSON HELPING

Today I also shed tears about a discovery I made about Philip’s ability to use his hands.  In my dining room I have 2 paintings made by Philip when he was just 2 and a half.  I am so glad my mom saved them because at one time his paintings became so numerous I used to throw them away.  I finally had two of them framed when we moved to Buffalo 4 years ago.  They look like paintings of the sky at different times of the day.  Philip also used to color and could draw a face.  For some reason we saw those skills vanish in time to where to this day he cannot even draw a straight line.

Ana and I talked to Philip and Ana asked, “Do you remember when you used to paint and draw?”  Philip replied, “Y.”  “Why don’t you do that anymore?” Ana asked.

P: AT THE TIME I STILL COULD HOLD A PENCIL.

A: What happened?

P: I CAN’T CONTROL EYE AND HAND ANYMORE.

Autism is such a mysterious condition.  I think there is still so much to discover in the future.  Perhaps whole paradigm shifts of viewing it and treating it will come about from all these autistic voices speaking out.  It is a good thing.  Their stories matter most.  Philip reminds me that even though he deals with such hardships, he has his eyes open to a happy future.

 Philip's paintings at 2 and a half years old

 Drawing at age 2

 

Learning From Autistics

In this past year, there has been a major shift in my thinking about Philip and about autism in general.  I am in the process of doing a complete 180 in thinking about autism.  Before, autism was something tragic, something to be eradicated, and a hardship.  More and more I am seeing autism as a special blessing, something to be accepted and supported, and an exciting challenge.  I do not believe I am being too idealistic.  These ideas come from autistic people themselves, including my son!  I will always keep in my heart and mind Philip’s words last night regarding his thankfulness for autism:  Anything is good if you seek God.  He was saying AUTISM CAN BE GOOD!  Now that’s a revolutionary thought, one I am still in the process of fully embracing, but I will get there.

The title of my post is “Learning from Autistics.”  Many so-called autism experts who do not have autism would say the proper term is “People with autism.”  But if you ask most people with autism, including the most recognizable one Temple Grandin, they would say they are “autistic.”  This is because they cannot separate autism from who they are.  Unlike a person who has cancer, autism cannot be operated on or taken out of a person.  Autism affects everything- the way one sees the world and interacts with it.  

Lately I have been reading blogs written by autistic people, some who can talk and some, like my son, who cannot.  Reading their stories has been most helpful in understanding Philip and giving me real hope for his future.  How I wish I would have picked up these readings over Jenny McCarthy and memoirs written by parents of so called “recovered” children during the first few years after Philip’s diagnosis.  I might have saved myself and my family from some heartache.

Don't Mourn For Us, a letter written to parents by an autistic man Jim Sinclair, should be required reading for all parents.  Another blog I love is written by a teen named Ido Kedar who learned to communicate through Soma’s method.  His blog Ido in Autismland and book by the same name show a highly intellectual and philosophical mind coexisting with a sensory and nervous system very different from most people.  Ido also talks of his deep spiritual connection to God in his post The Hope-Fulfiller.  

I’ve also come across some movies which have helped me in this journey.  The documentary A Mother's Courage gave me my first look at Soma and helped spur me on take Philip to see her.  Wretches and Jabberers, a documentary following two autistic adults as they took their message of presuming competence and self-advocacy around the world, was very moving and eye-opening about the fact that autistic individuals are more like us than not.

So I am learning like crazy.  Autism has opened up a whole new world to me, full of adventure, discovery, and growth.  I look forward each day to what I will learn next!       

                                               On our trip to Austin, TX to learn RPM