The Joy in Trials

This past week we have been preparing Philip for his transition to public school.  He is very excited, but as to be expected for any child going through a major transition, he is also quite anxious.  We have been talking through his feelings and today we looked into God’s word to get some good perspective on facing trials.

We looked over the first chapter in the book of James.  A portion of what we read says:  Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.  (James 1:2-5)

Do you know what trials are?

It is a stressful time.

Do you face trials?

Y (for yes).  I am autistic.  I am mute and my challenge is proving I am smart.  I am assumed to be pretty stupid.  I am not in control of my body well.  No peace for my senses.

What does the Bible say about trials?

Trials are good bc (because) they help us to need God.  Trials are good bc each day we depend on giving each ounce of our need to God to answer our leaning-on-Him prayers.  

What is perseverance?

Never giving up.

How is this related to trials?

Trials test your faith.  Trials open you to God.  Trials educate you to know God and to become more like Jesus.

A couple of weeks ago we studied the famous photographer Dorothea Lange who took the iconic pictures of the Great Depression.  We studied that time period and looked at her pictures.  I had asked Philip his impression of them.  “I like them.  They show the tension of the testing of stressful times.”

Today we again looked at Lange’s photo “Migrant Mother” and the story behind the California pea pickers.  Philip wrote this response:

A Sad Time

A mom was poor to address money.  She understood she was each day trying to survive.  She and her kids each tried to pick enough food to eat.  She sold her car’s tires to make money.  Dorothea Lange took her picture.  She became famous.  There is always hope.  I am reaching out to the world to make my trials known so people will understand autism.   

 Migrant Mother by Dorothea Lange

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

Photography/ Forrest Sargent

One of Philip’s New Year’s resolutions is to find a pastime.  I think photography might be something to explore.  My Dad is an amateur photographer.  He loves to take pictures on the many trips around the world he and my Mom take now that they are mostly retired.  He belongs to a camera club and enters his photos in competition.  

This year, Philip made Christmas presents for the family by writing poems or letters for them.  For my Dad, Philip wrote a sweet note in which he appreciated my Dad’s pictures.  He wrote:

Dear Lolo,

I am touring places with you when I see your pictures.  I like them a lot.  I am interested in photography.  I want to accompany you on your shoots.  

                                                      Love, Philip

On Christmas Eve, we had dinner with extended family and family friends at my parents’ house.  After dinner, my Dad showed some of us his pictures he took on trips to Brazil and Thailand.  He was trying to figure out which ones to enter into a competition and what he should name them.  My Dad picked out this photo he took in Thailand as a possible entry.  He asked Philip, "What do you think I should name it?"  I held up the letterboard for Philip as he spelled,

 

"Catching Light Opulence"

We all sat in shocked silence for awhile.  For me, my thoughts were a combination of "Wow, that title really makes you think about the picture" and "How did my 10 year old son come up with that!?  How does he even know what opulence means?"

My Dad was blown away.  He loved the title and decided that should indeed be its name.  My Dad was now having fun with Philip and decided to ask him to title some other pictures.  More and more of our family came to join in and see what all the hubbub was about.  Dad would ask everyone what to title each picture.  Most of our suggestions were pretty mundane:  monkey on a branch or lunchtime.  Philip continued to come up with the best titles. 

"I Am King"

"A Fruitful Day"

"Each Vine is Alive"

For the last picture, my Dad asked Philip why he didn't mention the monkey.  Philip spelled, "The monkey's tail is being camouflaged by the vines."  

My Mom was impressed with what she was witnessing.  She asked me, "Aren't autistic people supposed to be unable to generalize concepts?  They said if they show someone with autism a picture, they focus only on one aspect, such as the doorknob of a door and not the whole picture.  Philip sees the whole picture and more than any of us too."  

It certainly does seem we are all learning a lot of things about Philip that are contrary to the book or "what he is supposed to be."  I think of the last picture above as being an illustration of the individual being camouflaged by autism.  What we readily see are the symptoms of autism: flapping hands, jumping legs, unfocused eyes, and a mouth that does not utter intelligible ideas.  It all too easily masks the sharp mind, the keen eye, the gentle heart, and the unique personality of each very much alive human being. It is about time we focus on the human being and treat autistic individuals as individuals, not autism.   

On that note, I leave you with an extra treat about Forrest Sargent, a 22 year old non-speaking autistic photographer who also communicates via RPM on a letterboard.  I want you the reader to know there are many autistic individuals, even non-speaking ones, living meaningful and satisfying lives.  But I also want you to know that for each person like Philip and Forrest, many more non-speaking autistics have not yet been given this opportunity.  They desperately need our help to bring effective communication into their lives.  It makes a world of difference.  Click here to read Forrest's inspiring story from frustrating silence to liberating self-expression through RPM and photography in Seattle's Quirksee magazine.