Friday, November 28, 2014

Motor Planning

By Philip

I have problems planning my actions.  I know what I am supposed to do.  But really going through the motions to perfectly accomplish it is hard.  I think my motor planning is affected by a lot of things.  It is affected by momentarily putting my stims on hold.  I tame my pitiful body to more withstand the environment.  I assert my will on each sense.  It takes a lot of energy and concentration.  A lot of times I can't do it still but I am getting a lot better.  I am hard to part with stims.  Stims make it easier for me to deal with stress going through my senses.  I hear each sound at one volume.  I tear up hearing so much.  I hear the electricity, water running, outside traffic and noise, and people's voices.  Ceasing to hear extraneous noises requires lots of concentration to block out.  Stims help.  To pace or flap helps senses regulate. 

I try hard to calm my sanity each day.  Anxiety from the world's expectations of being normal each day awaken a fight or flight reaction.  Sometimes I reach for clothes to pull.  I don't mean to hurt anyone but I sometimes act out of fear or frustration. Heading out of uncomfortable situations is another sometimes annoying thing I do.  I really annoy people with my tendency to escape.  I have been trying to very much really ease up in my anxieties by listening to the Bible and praying.  This helps me very much.  I chase God's peace each day.

To get my body going I need prompts to initiate and keep going.  On my own my body cannot have many other activities other than thinking, listening, and stimming. When I have to go carry out a motor plan like picking up my trash off the floor and putting it in the garbage can, I must address my mom's voice telling me what to do.  I have to read my environment.  I look around for the trash.  Sometimes I get distracted from my plan by catching sight of something else and picking it up instead.  I need reminders until I have it down automatically.  Reading sensory input creates a mental map for me to route my aim to tame my actions purposely.  I am wired autistically, not like most people.  Being normal is hard.  Like a thin garment that covers me sparingly, I am wearing my motor plan over my natural tendency to make peace with my senses by stimming and defending my nervous system by avoiding anxiety producing situations.  I take each poached practiced skill and each day try to assimilate it into my being.  I eagerly wish to make them so a part of me that it is no longer hard for  me.  I take each motor skill I have and really try to build up my skills further and better. I apply my pointing to spelling my thoughts.  I eagerly learn new skills like soccer, reading books on my own, cleaning my mess, using my speech and writing more, daring to socialize more, saving nonsense for free time, and attending to teachers better.  It is real hard to learn skills at first without prompts to set the motor plan in place.  Teaching me skills is really important but communication is the most essential quality to my artistry as a human being.

I am trying to love myself as autistic and overcome the hard parts.  In my Sunday school class, Mr. Maurer helped me understand a lot about teaching myself each day that regular life is overrated.  I can still each day do a lot of things.  They may look differently, but I am still important.  I am teaching many people about autism and how people can accept us too.  I need your understanding.  I am living a life I love now.  I wish for other Autistics to find their potentials being reached too. 

    July 2014- at ICI Autism conference

Friday, November 21, 2014

Big Hero 6 Review

(Spoiler alert: Plot of first 20 minutes and themes revealed.  This week Philip and most kids from the Buffalo area had off from school because of the huge lake effect snow storm which paralyzed half of the city bringing up to 6 feet of snow in some areas.  Our area only got about 6 inches but since school staff come from all over the surrounding area, school was cancelled here too.  We were fortunate enough to be able to leave our house and make it to a movie.  Everyone who went really liked it!)

By Philip

I went to Big Hero 6 yesterday.  I enjoyed it a lot.  The main character is Hiro.  No one is as smart as him.  He makes robots that go to fights.  He wins a lot.  Both he and his brother Tadashi very much love each other. Tadashi really wants Hiro to use his brain in a good way.  He enrolls at the university and meets friends and Tadashi's health care robot Baymax.  Baymax is a sweet all-altruistic robot.  Having this nature Baymax teaches Hiro about what can make you truly happy.  Happiness finds itself in relationships with good friends and family.  Dear Baymax is the best example of a friend. Tadashi is another example of loving others above yourself.  Hiro learns that most important is love means caring and forgiveness and loyalty.  I want to be that kind of friend. 

Saturday, November 15, 2014

Meaning of Prompting

By Philip

(This essay was written in response to my question "Why do you need prompts to communicate?"  The essay was typed using Assistive Express iPad app and was in all lowercase.  My only edits were to capitalize where appropriate.  -Lisa)

Prompts are needed to help me stay on my task.  I opine this very much.  The world is very thought provoking and teaching me many lessons.  Tons of stimula compete for my attention.  That is why I have trouble focusing.  The racing thoughts in my head ram against each other and chance of getting them out is paper thin.  The art addressing the task of expressing my heard words is RPM.  My thoughts try to touch peaceful truths by easing the assaulting attacks on my senses.  To reach my thoughts RPM eases my ability to focus how I will say my thoughts. I must put teacher's voice helping me sustain my thoughts to single out above all other stimuli.  This is hard at first. I have to concentrate so hard.  I think it takes focus and energy.  People assign importance in what they can attend to but I cannot.  I take in every sensation at once.  I radically trust those people I spell each day with.  My output is really my own. Teachers do not hold my hand or move my keyboard.  I refuse to spell with anyone caught trying to influence my words.  In question is my need to have a person holding my board.  I need to have a prompt to get me started.  I need  to have someone with me going to make sure I put forth real effort in communicating.  Effort is nothing without your help because I get off topic due to stims.  I am interested in you listening to what I tell.  You reading my messaged talk means you care in deaming my word has meaning.  To teach a dear companion to spell each day is so peaceful.  A helper brings a lingering word to surface.  Without typing, my thoughts disappear.  I type about how prompts dare me to articulate my thoughts.  Prompts take my attention off the distractions.  The prompts I use most are you following clearly what I write, reading my words back, and reminding me to keep going. I ice up when there is doubt in me.  I cease to master control over lingering thoughts when I am doubted or not as used to someone's voice.  I am the best with mom.  She goes to great lengths to daily talk with me.  She watches me perfectly prompting without telling me what to write.  She is patient usually.  She teaches me many things.  She eases my fears and loneliness.  She takes me around to outings.  She finds hope in the Bible for me. 

Philip talking on his letterboard

Monday, November 10, 2014


“Emerging from disability” has been the best way I have heard describe how a person can progress living with autism.  I first read this in John Elder Robison’s article “Jerry Seinfeld and Autism” from Psychology Today magazine.  It reads (click here for full article):

“The ‘overcoming disability’ model is an unhealthy goal or way to portray autistic people.  Emerging from disability is a healthier perspective.  Autism is not a demon to be battled and overcome.  It is a difference that can cripple or render extraordinary.  Most autistics are disabled as children because our sensory apparatus is different, our communication skills are weak, and we have not yet learned coping strategies, or found our gifts.

When we find comfortable environments, learn to communicate, and find what we can do well, we begin to emerge from disability.  When we find places where our autistic differences are respected and we discover they give us advantages, we emerge more. Perhaps Mr. Seinfeld will talk of his own emergence and so provide a constructive model to younger people who follow.  I don’t know what he will do but I say, let’s give him a chance.

Please join me to welcome him, and see where it leads.  If we don’t like what he has to say, we can tune him out and go about our lives.  Remember that we must first extend compassion and acceptance to others if we are to ask and expect it for ourselves.”
              -Closing paragraphs of John Elder Robison’s Psychology Today article “Jerry Seinfeld and Autism”

Whether or not we agree with Seinfeld on his self-diagnosis of being on the autism spectrum, Seinfeld’s admission has thrust into the public the debate that has long gone on in autism circles: whether autism is a disorder or difference and whether our goal is to cure and eradicate or accommodate and accept. 

I am a mother of a child whom most professionals would classify as having severe, low-functioning, non-verbal, classic autism.  Some of my fellow parents with children like mine have taken offense at Seinfeld for daring to say he has autism because he is successful and his life seems so easy in comparison to our kids.  Robison made this astute observation: “The ‘my autism is worse than yours’ is a counterproductive and destructive way of thinking.  Look at depression and Robin Williams.  He looked pretty successful and functional a few month back, didn’t he?  But now he’s dead.  None of us can know the struggles of another.  There is no better and worse in autism’s affect.”   

I say all this to lead me back to my original idea that the “emerging from autism” paradigm ought to replace the overwrought language of “overcoming autism.”  I don’t think anyone on either end of the spectrum truly ever overcomes autism, nor should it be a goal.  It places an unnecessary burden on both parent and child to eliminate the distinguishing markers of autism.  In my early days in the world of autism, I learned to envy the stories of other parents whose children had become “indistinguishable from their peers.”  I felt and witnessed in others the enormous crushing weight of failure, guilt, and despair for not being able to achieve this in our children.  This doesn't just affect parents, but also the children who can sense their parent's disappointment in them and society's disapproval of who they are.

The idea of emerging from disability is a much gentler one.  I think of an exquisite statue emerging from under the careful chiseling of a piece of marble which forever retains its marble quality.  In a similar way, each person with disability- and in a way we all have some sort of disability- can progress and emerge into his or her God-given potential while keeping true to the substance from which he emerged.  Emerging is a long process with its end point much different from its start.  

My son Philip has progressed in this way.  I want to stress from the get-go that despite Philip’s progress, he continues to possess autistic traits which confer marked challenges.  He is still largely non-speaking, has difficulty in many activities of daily living, needs constant close supervision, experiences heightened anxiety and sensory disturbances, and exhibits stimming behavior such as movement, flapping, and vocalizing as a means of dealing with his altered experience of the world.  But something wonderful is also happening.  It is slow enough to not be discerned from one day to the next, but becomes unmistakably obvious when looked back at one month, 6 months, and especially a year ago. Philip is indeed emerging.  

Philip’s emergence began in earnest when we met Soma to learn Rapid Prompting Method (RPM) 2 years ago when Philip was 9.  It was the first time we knew he was capable of truly communicating more than just a few basic wants.  It was the first time we understood he was comprehending us and was in tune with the world around him.  A year later, Philip was setting goals for himself (his New Year’s Resolutions from 2014 can be viewed here):  learning to type, transitioning to a regular school, advocating for other non-verbal autistics to learn effective communication, generalizing his skills with others, and making friends.  As we near the end of 2014, Philip has been able able to meet many of his goals.  In February, Philip transitioned out of his ABA school where he was still learning to identify actions on flashcards and match numbers and their amounts from 1-5.  Now at public middle school, he is enjoying age appropriate education and is given accommodations to participate using his letterboard at first, and now typing.  In July, Philip attended the Institute for Communication and Inclusion Conference and was first exposed to the autism community.  He heard from mentors Naoki Higashida and Tracy Thresher who type to talk.  He met disability advocates Lydia Brown and Amy Sequenzia.   He met many kids and adults on a similar path as him.  When we returned home, he began typing with much more ease.  This year, Philip really began his mission to teach others about non-verbal autism and advocate for better education and effective means of communication by writing extensively about his thoughts and experiences in his blog and Facebook page.  He wrote to President Obama.  He corresponded with teachers, parents, and therapists to answer questions and help them understand his point of view.  Philip has been making friends.  It started with a few online pen-pals with kids like him, and now is socializing with friends from school and from our local autism community.  In September, Philip started meeting biweekly with autistic friends to chat and play games, each assisted with their communication devices.  In October, Philip attended his first school wide social event.  A girl even asked him to dance.  As Philip has been exposed more and more to the regular world, he has found his motivation to accomplish his own goals in communication, body control, and relationships.  He has been able to type with his teachers, aides, and other family members.  His younger sister Lia is particularly good at conversing with him on the letterboard.  He has discovered his own strategies to keep calm and more under control.  He has dared himself to participate in previously daunting social events with both his typical and autistic peers.  All the while, his personality is shining through more and more.  He is an earnest learner, a thoughtful soul, a loyal friend, and a middle school boy just a bit smitten with girls.      

Some may wonder what the catalysts were that made it possible for even a “low-functioning” child to begin to emerge from his disability.  In the same article referenced above, Robison pinpointed the three answers: 
  1. Acceptance
  2. Respect
  3. Accommodation

These 3 things are often given without reservation to people with typical neurology, but withheld (many times unwittingly) from people who deviate from the norm, and especially if they have no means to communicate.  Awareness campaigns which represent autism as a thief, an epidemic, or disease reveal a lack of acceptance.  Media coverage which sympathizes with parents who murder their autistic children demonstrates lack of respect.  Schools refusing to support children in their individual learning needs in order to keep the status quo show lack of accommodation.

For us, it was our visit to Soma, which turned us away from the prevailing thought about autism, and awakened us to a new way of thinking and acting.  In many ways, it returned us to a basic tenet of my faith: do unto others as you would have them do unto you.  This has made all the difference.

At a Halloween Party with Classmates

Tuesday, November 4, 2014


By Philip

There are a lot of blessings in autism.  I am hoping in God easily.  Questions and answers about life concern me greatly.  Today I thought about each person the earth has.  You cannot appreciate each one but God can.  He created each person with a purpose to do good works.  I am questioned about my worth because I cannot function by myself.  I need someone always checking on me.  I even need a person to help me talk.  It is frustrating but it is no worse than living poor or each day not having my health.  Challenges are a part of life.  They touch our plot in life to be a part of God's overall plan.  Many people don't understand the ease of believing in God as an Autistic like me.  I have pondered God ever since I was little.  I understand what it is like to depend on God because I am each day dependent on others. I care to teach the world about autism as one who is experiencing it.  I have a very important task to say we non-verbal people are thinking, not dumb.  We are headed to bright futures if given a chance.  No human is without dignity.  Each person is made in God's image and is deserving of respect and attachment to his Creator.  I am a servant of God to do His will that will bear hope to non-verbal Autistics and their families. Attachment to God is my greatest blessing. 

Philip has been enjoying a lot of "normal" Halloween activities this year.  He participated in his school's Fall Fun Night, went trick or treating, and went to a class Halloween party.