Thursday, May 29, 2014

I Know Why the Caged Bird Sings

Today, May 28, 2014, Maya Angelou died.  She was a true renaissance woman in our day.  She described herself as a poet, a lover of the “music of language.”  As I learned more about her, I thought Philip would really admire and appreciate this woman. 

After school, I told Philip about Maya Angelou.  We did a Brain Pop lesson on her life.  Then we read one of her most famous poems.

I Know Why the Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

Lisa (Me):  What did you think of this poem?
Philip:  I liked it.  I think it is carefree that the one bird is free to fly and sow its seed somewhere it pleases.  I think the other bird is trapped by the host’s cage.  No God so needs us to enslave one another. 
L:  Do you think the poem is about people?
P: Y (for yes)

L:  Who is the free bird?
P:  Someone who gets to live his dreams.

L:  Who is the caged bird?
P:  I think the caged bird is the author Maya Angelou.

L:  What is the cage?
P:  The cage represents oppression by society.

L:  Can you relate to this poem?
P:  I feel like the caged bird.  I kind of feel oppressed by further longing to vear (veer) to some normalcy.  I really want to mean to make a life for myself but I cannot bc (because) I feel limited by being autistic.  I really interested in teaching about the direction autistic research should be going.  Research should go towards teaching communication, not meaningless drills.

L:  What is the cage in your case?
P:  Meaninglessness.  I think bc of misunderstandings of not speaking, autistics are many times sentenced to meaningless lives.  They restlessly mean to free themselves from the torment of silence.  It sometimes makes me so keen to reach out to shake up schools which stand in the way of progress.

L:  Why does the caged bird sing?
P:  He sings for freedom.  Songs for freedom are sang realizing the past was really tormented but there is meaning to our struggles and hope for tomorrow.

L:  What are the things longed for?
P:  Inner peace, to not be mended for autism, education like a normal kid, really good learning how to communicate.


Tuesday, May 27, 2014

Reading and Spelling

Philip has been learning and communicating through the Rapid Prompting Method (RPM) since  October 2012, but the groundwork for his ability to read and spell was laid years before, without anyone but Philip knowing it.

When you see a non-speaking person spelling out his or her thoughts on a letterboard or keyboard, at first it seems a very incongruent sight.  Many of us harbor a preconceived notion that a person who does not speak does not think either.  It is this prejudice that made the term "dumb" synonymous with mute or non-speaking.  It is logical for people to ask, after they witness my son spelling, "How did he learn to read and spell?"

Philip tells me on his letterboard he was 3 or 4 when he learned to read.  When we started to get worried about Philip not speaking, Philip's Lola (Grandmother) bought him a sturdy set of cardboard flash cards with pictures of words from A-Z with the corresponding text of the word.  (As a side note, Philip's ABA flash cards only had pictures without the text.  He did not play with those.). Philip loved his cardboard flash cards and would carry them wherever he went.  He would spend much of his free time lining them up in a beautiful fan formation.  Taking my cue from Philip's love for his flash cards, I made homemade flash cards with each family member, close friend, and teachers' pictures on them with their name printed below.  Philip wrote about his flash cards saying, "I used to line up my flash cards.  To people it was understood as a stim.  I was teaching myself to read.  I played with words in my head.  I very much like reading."

Philip was taught in the ABA way for many years.  He says at first he enjoyed it, but in time he grew bored and resented the repetition and his inability to demonstrate progress in his drills and in his ability to communicate.  He wrote, "At home I studied a lot.  My mom did each lesson (ABA drills from school) too, so much I got mad at learning.  I meant to learn new things, but all I got was hearing the same stories over and over.  I did learn how to read though.  Read Love You Forever and If You Give a Mouse a Cookie.  I learned to role (play) like my mom telling the story.  I would practice reading in my head.  I smiled I could understand words on paper.  Each day I played with those words in my head.  I would see words in my head and arrange them in stories and meanings."

Philip also learned to read from church.  He wrote, "At my church they played videos of worship songs.  I used to match the words on the screen with the words sang.  I learned to read."

Other ways Philip learned to read were from street signs and words on TV.

Today I asked Philip how he learned to spell.  Here is his answer:
"I learned to spell from Soma.  She showed me how to write on the stencils the words I already knew how to read.  I love Soma because she showed me how to communicate.  To decide to write not only saved me from silence, it gave me a purpose: is to teach each autistic how to speak for themselves and to sometimes speak for those who cannot."

                      Philip and his flash cards at age 3

Friday, May 16, 2014

Knowing God

Tonight I attended Philip’s Stockade Achievement Ceremony at our church.  I am so proud of Philip.  Just a couple years ago, I would have never imagined Philip would be standing next to his peers at church receiving badges and the Sentinel pin for his achievements in memorizing scripture verses, Bible study, and good citizenship.  The thought of even bringing him to a meeting back then seemed an impossibility.  But here he was participating in the ceremony like everyone else, and even honored as one of the top Stockaders of the year.  As Ranger Daryl called the boys up for their badges, he gave special mention to Philip as having a heart and knowledge for God’s word.  As we finished the ceremony with refreshments, Philip spelled for his teachers Ranger Bob and Ranger Tim, “I am happy to have had you as my teachers.”  They in turn told Philip how much he has taught them.  These Stockade leaders have truly enriched Philip’s life by accepting him as he is, recognizing his contributions, and teaching him every week about the character of God in the Bible.  

As I look on my church family both in Miami and Buffalo, I see what a blessing it has been in bringing up Philip to know God.  Just recently, Philip has been writing about some of his early memories.  We lived in Miami when Philip was between 15 months and 6 years old.  We attended a small neighborhood church First Presbyterian of Miami Springs where we knew everyone and everyone looked after one another.  Every Wednesday night we had dinner and Bible study at church.  Between dinner and study we sang praise songs together from a video with lyrics displayed on a big screen.  The kids, including Philip, would often dance freely or sway to the music as we sang.  I never knew the impact of these moments on my son who could not communicate yet.  Philip recently recalled, “I could not speak my thoughts.  I understood everything going on around me.  I loved to learn songs.  At my church they played videos of worship songs.  I used to match the words on the screen with the words sang.  I learned to read.  I understood God from these songs.”

Philip has continued to learn of God at our church in Buffalo, Randall Baptist.  About Stockade he once wrote, “I like Stockade.  It is a good worker of teaching God’s truths.  Today I went to church and learned about armor of help from God.  I am lucky to believe in Jesus.  No one defeats the devil without Him.  Each day I worship God.  I am tons of rough edges needing God to smoothen me out.  Each day I hope so much to soften up so I can be used by God.”  

I have found that Philip not only can memorize Bible verses, he uses them to guide him, much like Jesus did during his temptation in the wilderness.  In a previous post, The Difficulty of Self-Control, Philip addressed the problems he had in controlling impulses, difficult emotions, and a body that is often in rebellion to his brain.  He wrote, “I am most in control when I take some words and try to get me to follow it.  I understand a lot of verses from the Bible.  They help me touch mountains of depression and tossed wind of seeking out help.  The adamant art of each day is addressing my self-control by praying to God.”  One Sunday before church, a week after he had had a particularly rough week in Children’s Church, I asked him how he will try to avoid the meltdown of the previous week.  He spelled, “I am a new creation.  The old is gone.  The new has come.”  (2 Corinthians 5:17)  A day after having memorized the verse Ephesians 2:8-10 (vs 10 reads For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.), Philip spelled, “ I am tomorrow one day closer to my destiny.  I am happy to have a purpose.”  Another time, inspired by the story of Moses, Philip wrote his pen pal regarding fears, “You should sometimes try so much to face a fear.  Try thinking of God catching your Amens and not letting you fail.”

Today I was so proud of Philip’s achievements in Stockade, but I am even more proud of the man of God he is becoming and the way he teaches me daily about our great God.

*As always, Philip gave approval of all his quotes and the final draft of this post.

 Receiving his badges from Rangers Daryl and Miller

 Top Stockaders

Sentinel pin on Philip's backpack

 Philip and Ranger Bob

Wednesday, May 7, 2014

Update on Life

Today I noticed it has been awhile since I last blogged and this would be my first entry in May.  After a long winter this year, the sun has finally come out and given us reason to be outdoors more so we have been spending a little less time indoors writing formally.  Today I found myself thinking about what a "normal" life Philip is starting to have.  Of course his life is not normal in the way most people's lives are.  He still needs someone to support his communication all day and keep a close eye on him, but for Philip, this is as close to being part of the normal world as he has ever been.

This evening we went out for ice cream with another family.  Philip was able to order his own ice cream flavor.  He chose mint, a flavor I would have never chosen for him.  It was the first time he ordered ice cream for himself and he loved it.  I had always assumed he liked vanilla.  I wonder how many times he must have thought, "Not again, Mom.  Can't you choose something more exciting?"  My friend T asked Philip how school was going and Philip spelled, GOOD.  Then she asked if there was anything he wanted to say to her.  NOTHING, he spelled like I might imagine any other 11 year old boy respond.  I asked Philip if he had a question for her and he asked her about her job.  We all laughed in good nature about the brief exchange.

Since the weather has warmed, we have been spending more time outside taking walks, jumping on the backyard trampoline, and going to parks and playgrounds.  Philip has resumed hanging out with his friend Nelson more regularly.  He enjoys Nelson's company and though he is not able to talk to Nelson as much as he wants to during the time they meet, he writes him notes in between which I text to his mom.  Philip also has a few pen pals who are autistic and communicate as he does.  I can tell he has a real heart connection with these kids.  They share deep understandings about the world and God that we non-autistics will probably never quite grasp in the same way.    I'm so grateful to see Philip cultivating such real, meaningful friendships.

Another thing Philip has been doing is steadily working on his goals.  For the New Year he came up with his 14 resolutions for 2014 (written here).  He has not forgotten them.  Among the goals he is working on is writing his autobiography.  He uses his letterboard to write a small paragraph every few days.  It has been amazing to discover his point of view in his early years.  It no longer surprises me to find out how different it was than what I assumed.  If anything, I keep learning how faulty my eyes are.

Philip has also been working on typing with support at his forearm.  Philip sees typing as an important skill and having a voice output is an added bonus.  While Philip is quite proficient with his letterboard, being able to churn out sentences and paragraphs with relative ease, typing is a lot more work.  We have used his lesson time as a chance to practice typing his responses in short 1-3 word phrases.  Occasionally he can type a sentence.  As with everything, I continue to push the envelope to see if he can do a little more.

This week Philip typed answers to our Renaissance lesson (here is a portion):
What does Renaissance mean?  rebirth.
Where did it start? italy.
What cultures inspired the Renaissance? greek roman.
When did it start? 1300.
What era was it a reaction to? dark ages.
What happened in the dark ages? no becoming inteligent.
Would you have liked to have lived in the dark ages? no.
During the Renaissance? yes.
Why? talk about  new ideas.
What were some values of the Renaissance?  Knowledge, learning.
How was knowledge from the ancient Greek and Roman times preserved? the monks transcribed a lot of books.
Who were the monks? the help of god.

I then tried stretching him by asking him to type his answer to the question, "What is your motivation to type?"  Philip's answer:  i want to type because kids think u are smart going to do something effective.

One of the biggest achievements Philip has accomplished on his resolutions list is going to public school and being supported in his communication by his teachers.  It has been an up and down transition, but lately more up.  Last Monday, his teacher wrote me a note that Philip was able to identify notes on a staff using his letterboard in music class with typical peers.  He even went to the front of the class with his teacher to fill in a measure with its proper rhythm, notes, and rests.  They say he is getting better with his letterboard and participates in math, ELA, and social group well.  Philip wrote yesterday, I AM LEARNING SO MUCH, BELIEVE ME.  "How does it feel?" I asked.  WONDERFUL was his reply.

Relationships at home are becoming more "normal" too.  Philip and his younger sister Lia have been having their daily communication time with Lia using the letterboard.  This morning Philip remarked, LIA IS GETTING BETTER USING MY LETTERBOARD.  My husband has been reading to Philip daily.  I facilitate conversation with the family.  Philip even jokes around.  Once when his older brother Carlos was being particularly funny, Philip spelled, YOU ARE KILLING ME!  When no one laughed, he spelled, I AM MISSING SOMETHING YOU TALKERS HAVE.  THAT IS TONE OF QUOTE.  We all laughed at that one!

Like in any life, there are its valleys and peaks and everywhere in between.  Right now I am taking in the beauty of an upward climb.

 Baltimore April 2014