A Haiku is a traditional Japanese style of poetry consisting of 3 lines. The first and third lines have 5 syllables. The middle line has 7 syllables. They are fun to write. This weekend we had a "Haiku challenge" with some family friends. Here are 3 by Philip.
Hammock
green tree makes nice shade.
a hammock awaiting me
makes my life awesome.
Equality
all men are equal
wasn't that what the law said?
let's refuse to hate.
Praise God
you are faithful GOD
always you work for my good.
i will trust in you.
This is the story of a boy who could not talk, but learned to make his thoughts known by spelling on a letterboard and typing. This is his path from silence to communication.
Monday, June 29, 2015
Thursday, June 25, 2015
Reflections on Pixar's Inside Out
By Philip
I saw the movie Inside Out. I enjoyed
learning about emotions and memories from Inside Out. I watched some nonsense
movies recently. This one was alright but not as good as Big Hero 6. There are
five competing emotions in the character Riley’s brain. They are Joy,
Sadness, Anger, Disgust, and Fear as personified. They compete to make memories
for Riley. Memories form islands of meaning. For Riley, these include
loving family and hockey. My acceptance of my autism is an island of meaning
for me. Lots of emotions and memories have built it. Pain and sadness are as
much a part of my life as joy. Lots of different emotions are necessary. People
usually only want to experience joy. But people make important memories based
on many emotions. I am able to tell you about autism because I have meaningful
memories based on lots of varying emotions. I am peacefully putting sad
memories away. I made the decision to walk an autistic life and no longer try
to become like a neurotypical person. Peace comes from accepting my path.
I am meaning to make the most of my life. Saving others like me from a life of
insignificance is my mission.
(image is labeled for reuse)
Tuesday, June 23, 2015
Using the Letterboard With New People
Philip has made good friends with
Ila, a girl from Italy who has cerebral palsy.
They correspond back and forth and have even guest blogged for each
other. You can read more about Ila and
adventurous life on her blog Ila’s Crazy Thoughts.
Hi Philip,
I have another
question for you. Last year I went to a summer camp and there was a nonverbal
kid. He used a letterboard but it was very hard for him. Sometimes I wanted to
talk to him but I felt like I would force him to use the letterboard and I
didn't want to because I could tell it was very hard for him. What should I do
next time I am in a similar situation?
Ila
To Ila,
Thank you for writing me. I am your
friend. Lots of advice I have for you.
My experience is that I get anxious when
writing with people who are not practiced in using the letterboard at
first. I need practice with each new person who holds my letterboard. You can
make me comfortable by accepting my anxiety by being understanding that it is
hard for me to coordinate my finger to point the way I want with someone new. I
am meaning to try my best but my anxiety may get in the way. It is meaningful
if you can keep trying until I get it. I like seeing you be patient and not
give up when I make mistakes or can't move correctly yet. People often give up
too easily when I don't succeed right away with spelling. Then limits are
placed when people have to communicate with me because they are dependent on me
having an interpreter to go between us. If only one person takes on the
role of helping me, this can cause strain on the person always helping.
People should not be afraid of trying and failing at first. Learning
to communicate with others is important. Love will make people respond
better. Lines of communication open when anxiety is lower. Patience
prepares me to peacefully deal with pressure to perform. I am much better
making friends with calm and assertive people. I am so able to stay focused
with someone who is more assertive. Accessing my thoughts to spell is hard
work. But it is worth it.
From, Philip
From, Philip
Philip using the letterboard with Big Sis Ana
Wednesday, June 10, 2015
Paving The Way For Inclusion
By Philip
I am friends with my classmate Maliko. She is really nice. Paving the way for inclusion are we. I am pleased to get
her note and answer her question.
To Philip,
I just wanted to say that you do great
at school and that I don’t think you any different than the rest of us. My question is what is your favorite thing to
do?
From,
Maliko
To Maliko,
Thank you for accepting me as your
equal. My favorite thing to do is make people understand autism. The way I
mostly educate others is through writing my blog. I am thankful for the
opportunity to come to Heim and learn. I like to very much make friends. I also
like to teach. Thank you for your question. I am meaning to be an advocate for
other nonverbal autistic kids. I live to pave the way for other kids like me to
meet academic goals in public school. Paving the way for equal access to
education for all kids despite their disability is my quest. Government action
becomes necessary if widespread reform is to happen. My goal is to help
government see the benefit of inclusion for everyone. I hope you will see the
purpose of inclusion is to make a more diverse and compassionate world.
Thank
you.
Philip
Monday, June 8, 2015
Why I Can Type But Not Talk
Philip answers a Classmate's question.
Classmate's question: How can you write all of that down, but can’t
read it out loud or talk?
From Philip:
Talking is not the same as
thinking. I am able to write my thoughts because pointing is much
easier for me to do than talking. You can talk without thinking very hard. It
seems so easy for you. I think talking is so hard. It is a major struggle to
move my lips and tongue to make the words I want to say come out. I want to be
able to say what I think but what come out are usually stim words like "potty" or requests for food. These put me in a place of people thinking I am only
capable of simple thought. No life is complete without thoughts of people,
feelings, and love. People often think autistics are incapable of
relationships, love, and empathy. That is furthest from the truth. People like
me also want friends. But I am not able to join in easily because I can't
talk. I wish I could. Language is no problem for me. That’s why I can write
well. People need to know that autism is pretty hard to live with. It separates
me from others by making my communication difficult. But if you can be patient
with me and put me in your lives, I can be happy living with autism.
People make my life meaningful.
Philip's submission for the Autistic Self Advocacy Network (ASAN)
Autism Acceptance Month last April.
"i like being autistic because i am more in tune to things people don't usually notice. i am smart and observant. i like leaving people amazed when i talk to them on my ipad and they weren't expecting me to know so much. i like spelling my thoughts because my words people can see. i like being moved by music and lines of poetry. i like appreciating nature. i like beauty in God's creation. i love worshipping God in my spirit. i love that God gives all people worth. my life as autistic is meaningful."
Wednesday, June 3, 2015
My Life by Guest Blogger Ethan
My Life
by Ethan
The many times I have wonder
Now that I am in this place
I hope to live in the world
And not in outer space
The day I die I hope to stay
And carry on my work
I hope for friends who hope to bend
my life into my happy way and not shirk
My life is fun help everyone
And how I love this space
My mom and dad are wise
They help me through this place
I have hope that my life will show
Others how to be
I am not a hero but I help others on the way
I am now young and crazy as a flea
Ethan lives in the San
Francisco Bay area. He loves music, learning how to play piano, and science,
especially astronomy. He dreams that one day he and his friend, who also uses RPM, will create a movie showing their RPM journey.
*RPM stands for Rapid Prompting Method, developed by Soma Mukhopadhyay as a method to teach regular academics and communication
Tuesday, June 2, 2015
Understanding a Young Autistic Child
Philip answers a question from a mother who has a son with a recent autism diagnosis.
Hello Philip. I have a 3 and a
half yr old son and he was diagnosed with autism before he was 3. I’m having a
hard time; really hard because he never listens to me. I don’t know if he
understands or is just not paying attention. Sometimes he responds but most of
the time he ignores me. He used to recite ABC's and numbers but now he says
nothing. At an early age, did you act like that too? I'm in need of understanding
his behavior. And I know no one around me with this kind of case on their
children. Thank you for creating this page.
Best regards,
Ms. J
Dear Ms. J,
I am an Autistic since
birth. Understand our brains are not neurotypical. Not looking or talking does
not mean not thinking. All people need love and understanding even when they
can't express themselves. I can try to understand you to see your side in
this. I know you are worried. Autism is different. People make life difficult
for your son to fit in. Moms want to fix everything. My mom wants me to not
make mistakes but I make a lot. I can learn from mistakes. You can try to
understand your son is learning. No one needs to baby him. My advice is to
treat him at his age. No matter what, please veer him toward the normal
world as much as possible. He each day learns from being exposed to many
experiences. Listening to people’s words amounts to many momentous
memories. Watch what you say around him. Make sure you talk about nice
things. No one should have to hear about their deficits without also hearing
about their strengths.
I was like your son when I was younger. I
was always listening but not always responding in a way people understood.
This was because my body would not follow my mind’s directions. There are
moments my body could obey better but it is not consistent all the time. When I
was younger, I was able to talk better with my mouth. I had to put my learning
at the mercy of ABA to make me talk like a neurotypical person. I was only able
to speak as I was trained to talk through repetition. I could not express what
I really wanted to say. Popular therapies like ABA and speech could not help me
truly communicate because they lack presumption of intelligence. No Autistic
wants to be made to feel inferior. I am finally able to tell my true
thoughts by typing. I hope you give your son the opportunity to be himself as Autistic
and make his life better by accommodating his challenges in fitting into a
neurotypical world.
From,
Philip
These are some of Philip's previous posts which explain the following (click to read):
Philip supporting his brother at a soccer game