Monday, June 29, 2015

3 Haikus

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.

green tree makes nice shade.
a hammock awaiting me
makes my life awesome. 

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. 

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?

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

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?

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.

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.



These are some of Philip's previous posts which explain the following (click to read):

Philip supporting his brother at a soccer game