I intentionally didn’t post anything over the Christmas break because our family was a bit overwhelmed with what James said via the letter board and it took a while to process. We had a lot to think about and it was news to us that James often felt “lonely and without a role” during the holiday family gatherings and celebrations.  I think we are all adjusting to the fact that this person who is our son and brother could not tell us what he was really thinking until now. There is a lot in James and can you imagine how many feelings you would have stored up if you were unable to speak for 12 years?

He wrote each person in our family, as well as his three main teachers, a Christmas letter.  Each letter was very special because he tells us how important we all are to him for various reasons. There wasn’t a dry eye at our table on the morning we read them.  But there were some hard things in the letters.  It is easy to make up what you think someone is feeling if you never hear their thoughts expressed. And it is easy to assume that they know things you think are implicit to your relationship but may not be to them. So we are learning and growing with James and also remembering that he is a teenager so maybe some of the angst is plain old adolescence!

Last Thursday James got to experience what for him was (I think) a dream come true, and for me it was definitely a dream come true!  James was given permission to attend “seminar” at Rivendell School. For those readers who don’t know about Rivendell, it is a unique and wonderful school for children grades K-8. It is the school where James’ three older siblings attended and where we just assumed he would go as well, until he got autism. The school and its families are a big and treasured part of our lives and James not being able to go there was one of the many losses that came with autism.

Fortunately the Rivendell community has stood by us through all the years and has been pulling for James. He has been eating lunch with the 7th and 8th graders twice a week this year and the headmaster has eagerly followed  all that James has been learning and saying through RPM. I asked the headmaster on Thursday if there was a chance that James could go to a seminar just to practice sitting with a class, paying attention and possibly spelling on his letter board. He said “how about this afternoon”?  The 6th graders were going to discuss Oscar Wilde’s The Selfish Giant and James was welcome. When I came home and told James and his homeschool teacher about the opportunity James literally jumped up and down. His smile was huge.

It went better than any of us (except James) expected.  He sat calmly and quietly, and he had no trouble with the large table of 16 students sitting in the large busy multi-purpose room, but most importantly he spelled out thoughts and answers and was a full participant in the discussion! Apparently he pointed out that one reason the Giant might have been selfish is that he spent 7 years with his friend the Cornish Ogre and there was limited conversation or “language” in that time and perhaps that led to some of the trouble.  James certainly picked up on the dearth of conversation in the Giant’s life and wanted the class to know that might make him misunderstood and selfish!

So a very big “first” for James to be in a class where he can express thoughts and be a part of the conversation. It just makes sense that it would take place at Rivendell, for Rivendell “was the perfect house, whether you liked food or storytelling or singing or just sitting and thinking best, or a pleasant mixture of them all. Merely to be there was a cure for weariness, fear and sadness”...J.R.R. Tolkien.

I think most of us don’t like feeling “out of control”. In the big scheme of things we have so little control but we like to feel in the day-to-day that we have a lot of it, a whole lot! Well if you know anyone with autism you know that a major part of the struggle is that they can’t control anything. It is hard to imagine what it would be like to send a message to your body and it just doesn’t respond. To have a thought but your tongue, jaw, lips and breath won’t form the words you need.  And to have so little emotional control.  Apparently that is one of the most stressful parts of the brain injury that we call autism; emotions of all kinds can completely overwhelm the central nervous system. It is one reason why the kids shut down or look like they are shut down, because it is safer and easier to turn it all off rather than deal with a runaway central nervous system.

James’ speech pathologist did a lesson with him on Stephen Hawking.  She has been giving him a lot to think about by introducing him to great men and women who have lived amazing lives despite their disabilities. She explained that ALS is a neurological disorder that results in loss of voluntary control of the muscles. She asked “Can you relate to this experience”? He said:

I AM NOT ABLE TO CONTROL MY BODY BUT I AM ABLE TO CONTROL MY BRAIN SO THOUGHTS END UP AS ACTIONS.  FOR EXAMPLE, I FEEL FRUSTRATED AND TIRED AND THEN I MAKE A LOT OF NOISE AND PURPOSEFULLY ACT OUT AND SHOW THAT I AM MAD.  I FEEL BAD SOMETIMES THAT I CAN NOT BEHAVE MORE APPROPRIATELY.  I UNDERSTAND THAT THIS UPSETS MY PARENTS BUT IT IS THE ONLY WAY I KNOW HOW TO SHOW HOW I FEEL.  I DO NOT LIKE NOT HAVING CONTROL OF MYSELF.  I FEEL LIKE IT MAKES ME LOOK STUPID AND MAKES OTHERS THINK THAT I AM NOT SMART.  IF THEY ONLY KNEW WHAT I WAS THINKING THEY WOULD BE SHOCKED.  I AM ALWAYS THINKING ABOUT SOMETHING.  

Yesterday our Speech Pathologist held a seminar for some families who are starting RPM with their children. She asked James if he would come to the seminar and help her demonstrate RPM.  Here is what he said about doing the workshop and then their subsequent discussion about a Shel Silverstein poem and freedom.

EV: “Before we got into the lesson, I told James about the RPM workshop that I am giving this weekend and that I would like to have him do a short lesson with me to show everyone.  I asked, “will you help me out?”  He wrote, YES.  I AM HAPPY TO HElP YOU AND SHOW PARENTS HOW TO USE LETTER BOARD TO HELP KIDS LIKE ME TO TALK TO OTHERS

I also told James that I would be working on the curriculum for January over the holiday break.  I asked him what he would like to study next.  He replied, I WANT TO LEARN ABOUT THE HISTORY OF THE WORLD 

A lesson on Where the Sidewalk Ends by Shel Silverstein:

There is a place where the sidewalk ends

and before the street begins,

and there the grass grows soft and white,

and there the sun burns crimson bright,

and there the moon-bird rests from his flight

to cool in the peppermint wind.

Let us leave this place where the smoke blows black

and the dark street winds and bends.

Past the pits where the asphalt flowers grow

we shall walk with a walk that is measured and slow

and watch where the chalk-white arrows go

to the place where the sidewalk ends.

Yes we’ll walk with a walk that is measured and slow,

and we’ll go where the chalk-white arrows go,

for the children, they mark, and the children, they know,

the place where the sidewalk ends.

1. How does this poem make you feel?  REMORSEFUL.  LUSH FLOWERS IN HIDING FROM PEOPLE
2. What do you think this poem is about?  FINDING BEAUTY AROUND US
3. Silverstein uses powerful imagery in this poem.  What images come to your mind as you listen to it?  HURRY….KINDNESS….LAUGHTER….FUNNY
4. Silverstein encourages us to use our imagination as a child would and leave “this place” and go to a magical place where the sidewalk ends.
   1. What do you think of when you hear the line “this place”  OUR WORLD
   2. What place would you like to leave behind?  UNSPOKEN WORDS
   3. What would you like to find “where the sidewalk ends”?  I SEARCH FOR PERSONAL GROWTH AND WISDOM
5. Here’s a great quote from Silverstein, “To me, freedom entitles you to do something, not to not do something.”  What does this mean to you?  FREEDOM MEANS BEING ABLE TO SAY WHAT I THINK ABOUT IN MY HEART AND SOUL.  LAST YEAR I WAS IN PRISON, NOW I AM FREE.  

We are finding that James (just like so many others who now have a voice through spelling) is compelled to spread the information about  RPM and be a part of bringing his newfound freedom to others!

Last week was a bit rough for James.  He expressed that his eyes hurt a lot when he does RPM (spelling his thoughts and answers on a letterboard) so we had to back up a bit and not do quite so much spelling.  I think the stress and strain of getting out everything that he wants to say can get to him.  On Thursday when his teacher asked him why he was crying and complaining during the course of a normal conversation she and I were having he said it upsets him when we talk to each other but not to him. She said she understood communication was really important and that he needed to talk. He said I TALK TO GOD.  She asked if he wanted to share what he talks to God about and he said TO HELP ME TALK. 

This week and next James and his teachers are finishing up their American Classics unit so today they looked at a poem by May Swenson called Water Picture and also discussed Blues Music. His teacher asked him from just hearing the poem what he thought imagery means and he said SPEAK IN PICTURES.  She asked what he thought the mood of the poem was and he said CALM. She said the poem had a nostalgic feel to it-the feeling of looking back fondly at something.  James was asked to use imagery to describe a time or place he remembered fondly. Here is what he wrote:

WILLIAMSBURG.   A SUNNY DAY.   I AM ALL DECKED OUT IN BLUE AND SMILING WIDE.

What are the Blues? Was the title of the lesson on Blues music.  Here is part of the lesson:

Blues music began as the primary artistic expression of a minority culture: It was created mainly by black working class men and women. Through its simplicity, poetry, humor and irony it mirrored the qualities and the attitudes of blacks in America for three-quarters of a century.

Teacher: What does minority mean?

James: SMALLER, LESS PEOPLE

Teacher: What does state of mind mean:

James: MOOD

Teacher: What do we mean when we say someone has “the blues”?

James: SAD

Teacher: Why would someone want to sing about “the blues”

James: MAKE THEM FEEL BETTER

Teacher: Why do you think “the blues” originated from Black Americans?

James: DISCRIMINATION

They discussed some of the blues artist’s names including Muddy Waters, Bo Didley and Lightin’ Hopkins. He was asked to make up a blues name for himself and he said HAPPY JAMES.

The teacher said there is an ongoing debate among blues enthusiasts: Can people who are not African American truly enjoy or play the blues?

James: REALLY EVERYONE FEELS SAD

Last but not least James was asked to come up with a line or two of his own Blues song.  Here it is:

TALKING

HOW I WANT TO SPEAK MY THOUGHTS AND BE HEARD

Final thoughts from me:

I think we have a generation of afflicted children, who as they mature and are given a means to express themselves will generate art, music and literature the likes of which we have not yet seen; for it will be born from the womb of an imposed and imprisoned silence.

James discussed two Robert Frost poems last Tuesday and today. Here is some of the discussion.

Teacher: Frost’s poems deal with man in relation with the universe. Man’s environment as seen by Frost is quite indifferent to man, neither hostile nor benevolent. Man is alone and frail as compared to the vastness of the universe. 

Teacher: Why might man be frail in comparison to the universe?

James: REALLY SMALL AND WE DIE

A famous line from one of Frost’s poems is,

“But I have promises to keep

And miles to go before I sleep…”

Teacher: What do you think that means?

James: THINGS TO DO BEFORE WE DIE

Teacher: IF you have miles to go before you sleep or many things to do before you die what are some of those things?

James: DEMAND BETTER EDUCATION AND NEW LIFE ON MY OWN

Today they read THE ROAD NOT TAKEN by Robert Frost and when James was asked how it made him feel he said ENLIGHTENED.  When asked what he thought the poem was about he said LIFE CHOICES.

Teacher: Some people think that this poem suggests that one road is worn more than the other, however if you look at the last line of the second stanza, it says “had worn them really the same”. So if both sides look equally appealing, how would you choose?

James: FAMILY OPINION (obviously not a full blown teenager! : ) 

Teacher:  Can you think of a time in a person’s life when he might need to make an important choice?

James: COLLEGE

Teacher: Imagine that you have just made an important choice about your future and are about to set down that road. Describe what your road looks like.

James: LONG LEAF COVERED PATH WITH ROCKS ON BOTH SIDES AND LIGHT AT THE END

(that answer may be inspired by my blog picture–not sure!)

Two weeks ago James asked his speech therapist to help him make a Thanksgiving gift for the family.   He wanted us to open it at dinner time.  I don’t have words to describe how we felt when we read James’ thoughts. All I can say is that after 12 years of not knowing his feelings the five of us were dumbstruck at the depth of love and understanding he is expressing.  First is the note he wrote to go with his gift.  The gift is a framed acrostic.

Dear Family,

I love you very much. Remember that when I hurt your feelings. I want you to know how much you mean to me. I understand how much I mean to you. I am grateful to be in this family.  

Happy Thanksgiving,

James 

Here is the Acrostic he wrote (entirely on his own initiative):

Time for family

Have group fun time

Around the table

Nice plates with food

Know I am loved

So very much

Great laughter sounds until bedtime

I love nights like this one

Very tender treasured moments

I understand how speaking matters to you

Nothing else makes you so unworried about me

Grateful I can talk to you now

Today James got to work with the wonderful Soma.  They did some really neat lessons about the real history of St.Nicholas and celebrating the birth of Christ and when that was finished she asked him if he wanted to write something. He said a “CHILDREN’S FABLE”.

LONG AGO A GIRL WAS CATCHING FISH AND FOUND
A DIAMOND FISH. THE FISH WANTED TO LIVE. HE PROMISED
HER TEN FISH IN RETURN (for his life). IT WAS A BARGAIN.
SHE TOOK IT.  THEN SHE CAME HOME AND HER BROTHER
LAUGHED AT HER FOOLISHNESS.

HE WENT FISHING THE NEXT DAY. HE CAUGHT THE DIAMOND
FISH. AND HE DID NOT LET IT GO EVEN IF THE FISH PROMISED
FIFTY FISH IN RETURN. WHEN HE CAME HOME HE OPENED UP
THE BASKET. THERE WAS A BIG MOUSE INSIDE.

THE MORAL: NEVER LET A GOOD BARGAIN GO!

WE MUST KNOW WHEN A FISH TALKS THERE IS SOMETHING IN IT.

James has been studying the American Classics (at his request) this past month.  He has been learning about great American poets, writers, artists and scientists.  When he was learning about Emily Dickinson it was mentioned that she often wrote about “loneliness” or “belonging”.

He was asked “what does belonging mean to you”? He said “HAVING PEOPLE AROUND WHO UNDERSTAND ME AND TALK TO ME LIKE I AM SMART”. And “What communities do you think you belong in”? “I WANT PEOPLE AROUND WHO ENJOY LIFE”.

In this same unit James read some Langston Hughes poetry  which reflects his experience as a black man.  James was asked what themes would be reflected in his own poetry and he said “KEPT INSIDE EACH TODAY, LIVING ALONE A LIFE READY.” After reading the Langston Hughes poem As I Grew Older James said that it was about “BROKEN DREAMS, SLAVERY”.  When asked what wall or obstacle Hughes faced he said “SLAVERY”.  When asked what his own obstacle might be he said “SILENCE”. He then wrote a poem about breaking through walls to reach your dreams. Here it is:

DONT GIVE UP
EACH DAY IMPORTANT
KEEP HOPING
EACH TEACHER DIFFERENT.