ICI Conference

The Institute on Communication and Inclusion (ICI) at Syracuse University has a yearly 3-day convention in which individuals using alternative forms of communication such as FC, AAC, or RPM join together with their supports for talks, practical workshops, panel discussions, exhibitions, and meetings.  It is a place where each person is considered intelligent and competent no matter their diagnosis.  It is a safe place where differences are celebrated and stims such as flapping, pacing, or rocking are welcome. Philip and I were treated to talks by Naoki Higashida, a Japanese Autistic young man who wrote the book The Reason I Jump, Autistic advocate and activist Lydia Brown, and Stephen Kuusisto, a blind professor, author, and poet.  We also attended workshops to improve typing and panel discussions on inclusion in school and community.  Along the way, Philip met Autistic friends Oliver, Daniel, Amy, and others.  Philip had this to write about his first time experience at the conference.

This week I went to the ICI Conference.  I had a nice time.  I am glad I went even if I was scared of the crowds.  Each day I learned to accept autism more.  I learned I am not alone.  On day 1 I met Naoki Higashida.  He is learning from his mentors too about acceptance.  I get his feelings tons each day.  He decided to reach out to other nonverbals.  I am going to try myself to reach out as well.  If reaching out is my calling, I am hearing it loudly.  I picture the meaning of life is learning to accept my autism in the world out there.  I want to mean to really notice like-minded wretches (a reference to the movie Wretches and Jabberers in which the non-speaking Autistic typers refer to themselves as the Wretches) to help them communicate.  I learned to meet others like me is important.  I met Oliver and learned I am not the only one who has difficulty typing.  I am daring to improve by next year.  I am weary of beating up myself because of autism.  I want to be free to be autistic and make a life understanding my very good purpose.

         Taking a rest from the typing workshop.

                                          Meeting Oliver and brother Sam

I Am Meaningful

By Philip Reyes

I am somebody.

I am your son.

I am a brother.

I am a cousin.

I am a student.

One day I can be an educator,

A rounded person to imitate.

I can be a worker,

Make a really good living.

I can be a loving friend, 

Someone to confide in.

I am autistic, but I am learning I am much more.

I am me and I like me a lot.

Change

Today Philip and I discussed how some changes happen in society.  We contrasted revolutions and grassroots movements.  Revolutions are marked by a sudden change in power in which the powers that be are replaced by another power at the top, often by violent means.  The Bolshevik or Communist Revolution which overthrew the last tsar, is an example.  It's leader Vladimir Lenin, a politician of noble background, was moved by Marxist theory, but he himself was not from the labor class of which he claimed to speak for.  In contrast to revolutions, we looked at grassroots movements, an example being the Civil Rights Movement lead by Martin Luther King Jr.  Grassroots movements are distinctly different because they are formed from the bottom up rather than top-down.  Philip summed it up best by writing with his letterboard, "It is daring by the oppressed."  In grassroots movements, ordinary people come together to influence the change they believe in whole-heartedly, without concern of power or position.  Their passion comes from truly wanting to better the lives of others.

On the topic of change, Philip wrote:

I want to each day so care for each Autistic by establishing RPM as the standard method going to school. Right now the standard is remedial work.  It otherwise is ABA.  ABA is too repetitive and boring.  No demands are made on our intellect, only on our uncooperative bodies.  I escaped this model of education. RPM teaches me something new daily.  RPM is day to day meaningful learning and communication.  I am now in a generation of so-called non-verbals who come to learn RPM to talk with a letterboard.  You should dare to listen to us.  We are not deceitful.  Instead we are really kind and caring.  We are trying to help each other.  You really show care when you dare to meet us where we are learning notable RPM.  

Philip

An outing with Tito Mukhopadhyay during Soma's RPM Workshop in Buffalo.  Many families and professionals were able to learn RPM for their children and clients for the first time.  The kids participating were able to show everyone how smart they are!

                                                            Philip and Tito

Letter to Autism Daddy

This is written by Philip to Autism Daddy in response to his blogpost, My Son with Severe Autism is Happy.  Isn't that the Most Important Thing?, a 2012 post reposted on the Autism Daddy Facebook Page today.  I have followed Autism Daddy's blog for a few years now because our sons are both the same age and are non-speaking.

To Autism Daddy,

Today my mom read your blog post to me.  You are a good dad to write about your son.  I understand you are frustrated by your son's lack of speech and progress.  Rightly so.  I am telling you tips to make his life better.  Dare to try RPM.  RPM took my mind each day and taught it to think over my stims.  I was trailing behind in my own world.  I am so happy I can day to day improve in talking now.  I cannot use my voice well.  Cannot meet normal expectations.  I feel insecure in my actions.  But I am intelligent and now I can show everyone my thoughts.  Before I could communicate, I was so frustrated with life.  I placed myself in world of my own.  I made my own rules, not caring that people would be pissed off.  I understood everything but couldn't do anything about it.  I liked to kid around with my teachers and act stupid bc (because) they treated me like an infant.  I am telling you your son is a lot smarter than you think.  I understand him bc I am intelligent and non-verbal too.  Not talking does not mean not thinking.  Would you like to be kept silent?  This is not peaceful.  This is killer pain.  I urge you to get understanding of RPM and give your son a voice.

From, 

Philip

(Autism Daddy, please check out my resource page and RPM Provider page.  I believe there is one in your area.  Philip and I would love to see you get help for Kyle to learn and communicate.  We know he can do it!)

Visiting sister's college 7/14.  I like the sign.

Video of the first couple sentences of the letter.  We started slow because Philip is beginning typing.  At the 3:30 mark we switch to pure letterboard which goes much faster.  (Video taken by 9 year old sister)

Flapping

By Philip

I love to flap my hands.  No one goes through the trouble I have to feel my body.  Dare to feel each moment floating in space.  I carry least weight and each day I go crazy not knowing how my body will act sometimes without my mind's control.  Most people have portly muscle mass to feel their own weight.  I do not.  I like to flap, daring to fly like a bird off a tree.  I flap to mean to fly away to freedom from my body.  Each day instead of carrying weight, I carry air.  It is damning.  It is hard to live so meaningfully.  I cannot do anything most people take for granted like I cannot talk, lip read (when asked to explain, wrote- I cannot make eye contact when people talk to me), I cannot each day very well act normal.  I need to flap so I can feel my placement in space.  If I don't, I place myself in hell.  I have killer fears of feeling weightless.  I feel like I might disappear.  I lie in peace momentarily when I am dealing with pillows of cotton.  I love blankets for this reason too.  I am insensitive to recreational behaviors like learning sports bc I cannot play like everyone else.  I dearly need to exercise.  I barely have strength in my muscles.  I even have no meaningful movement except my finger.  Each day I dearly need a sensory diet.  I have a goal of easing my ability to annoy others.  I am not trying to annoy others but it happens all day long.

Thoughts on Thinking, Reading, Writing, and School

By Philip

I think reading is important bc (because) it is how we hear information best.  I read a lot.  I like to read signs and TV.  I have a hard time reading books bc momentarily I cannot very well handle a book.  Books are hard to handle bc they store information too sedentary.   How you read it, you have to sit still.  When I read I either read it at a glance or ten words at a time.  I need to teach myself to not be too keen to tons of words all at once. It undermines the ability to understand. Before spelling I read my thoughts in my mind.  No small task. No one sees the struggle I have to write my thoughts. Ordering intentions in my swollen limited brain is tiring. I sometimes really want to be normal. I store too much information to peruse carefully now. I have to really work to retrieve my decided thoughts from swirling ideas going on under the talked  out thought. Not being able to stim makes it harder to focus on my thought to spell. I can concentrate better when I can stim and move around.  It is hard to stay on task bc I really get distracted easily.  I want to not like me going after my impulses so much.  I want to be in control of myself better.

I want to write about the need for sage wisdom to teach non verbal Autistics.  Methods of tedeous work such as ABA are ineffective in helping interests develop.  I am weak in learning skills for the real world.  One day each Autistic should decide to understand the neurotypical world.  I think going to school to learn to practice going out into the real world is so important.  We Autistics are not able to understand normal social rules without exposure to normal situations.  I need to monitor myself better.  I am sometimes really mean to people by lashing out at them in my anger and rotten anxiety.  I am immature in my emotions.  I kind of do not walk out my feelings.  They pour out instead.  I am beginning to understand myself better about pouring out my feelings better so that I won't hurt anyone.  I am not strong at controlling impulses.  Impulses to form other kinds of reaching out are strong.  No mention of escaping anxieties.  I have a strong desire for acting to obtain objects that kind of get my attention like leaves and strings.  I am active bc I learn best when I am allowed to move.  Day to day I am peaceful when I finish my writing about life.  Hearing my thoughts come out makes me mirthfully eager to stay in this world and not in Autismland.

 At Big Sis's high school graduation June 29, 2014