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

Emergence


“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

Blessings

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.  




Saturday, October 25, 2014

Fall Fun Night

Envision the scene.  Friday night at the public middle school.  Lines of cars dropping off boys and girls, some still with remnants of sweet baby chub, others as tall as adults with the swagger of ruling the school.  Girls running to one another giving hugs and excited greetings and boys in groups ready to check out the games.  This is Philip's first big social event at school.  I accompany Philip as his chaperone.  The event is billed as a family night so there are a handful of us parents bringing younger kids, and I bring Philip's fourth grade sister Lia too who fits in well with the confidence of the kids there.  She finds a friend she knows from church and off she goes.  Philip and I enter the gym.  Around the perimeter are all sorts of games like ring toss, darts, and bowling, set up and run by teachers and older students.  Loud party music plays.  The kids play, mingle, and run about.  The younger ones enjoy volleying balloons around.  It is a happy and festive time.

In years past, Philip would have run from this scene.  Any one of the combination of factors there- the crowd, the echoey gymnasium, music from loud speakers, or a frenzy of motion, would give Philip an extreme fight or flight reaction.  I would have given a valiant effort to drag him in while he screamed and cried, eventually giving up in deep frustration.

However, this night was different.  Philip actually confidently walked into the gym.  He saw a teacher he knew and greeted her.  I tried to back off, standing by a wall, just keeping an eye on him.  The music got him going so he walked around in pace with the music.  At times, he bounced a balloon.  From afar, he looked like any other kid there.  About 6 different girls and one boy tried to engage Philip in interaction.  They greeted him with hugs or high fives.  I knew Philip liked it, but he was having a hard time reciprocating.  He would continue to walk off as they talked to him.  The kids were so nice though and didn't seem at all offended.  One girl in particular gave such a persistent effort, trying to dance with Philip and get him to play one of the games she was running, but he would not follow her lead.  At times, I'd introduce myself to Philip's friends and try to explain that the environment was probably very difficult on his senses.  He was actually doing really well, for him.  We ended up staying the whole time.

Philip was pretty tired when he got home, so the next day I asked his impressions of Fun Night.  He decided he would write it as a letter to his friends.

Dear Friends, 
I liked Fall Fun Night.  I surprised myself by not fighting accosting stimuli.  Accosting stimuli are crowds, loud noise, sound bouncing off the walls, and racing motion.  I am proud of myself for going.  I decided to withstand it to dive into the world, daring to try not drowning in bitterness about being autistic.  I am sorry I seemed to ignore all of you.  I had to keep moving to save myself from going into sensory overload.  That means I practically tantrum to get out of an overwhelming area.  Listening to you talk to me is a delight to me.  Healing talk is needed to help me begin to heal from my years of being treated like I don't matter. Please don't give up on me.  A tap on my shoulder can help get my attention.  We can ask Mr. B to help me type with you.  I am glad to have you as friends.  I am hoping to not ignore you next time.
From, Philip


Philip's 6th grade school picture.  Unfortunately I forgot to bring my phone/camera to Fun Night! 

Monday, October 13, 2014

My Movement

By Philip

I am wanting a chance to explain my movement as a result of my autism and partial apraxia.  I understand I am quite an annoyance at times.  People have a hard time being patient when I run away or seem like I was ignoring them.  I am always listening even when moving.  I can be trying to sit and work.  I am trying to do my best.  People have a task for me but I can't make myself sit to do it without getting up from my seat a lot. I am trying to control my impulses to run from a difficulty.  Difficult things are concentrating hard to each day meet people's expectations and not easily being able to.  I tear apart being unable to succeed so I flee.  I really need to be understood to feel more comfortable and at ease.  Then I am more able to stay still.  It also helps when I am used to a situation.  I can calm myself.  I am more able to do this now that I can communicate. 

I also have difficulty feeling my body in space.  I move to try to not feel like disappearing.  Perhaps I reach for objects to tap to dot my place in my environment.  I piece together lots of stimuli to find my place in space.  I am kind of like an alien built for a different planet.  I am instead trying to make this world my home by adapting as much as I can to the rest of mankind.



Saturday, October 4, 2014

Evolution and God's Design

By Philip

(Lisa's note:  This essay was prompted by Philip's studying of the 6th grade science lesson at school on Darwin, the theory of natural selection, and modern evolutionary theory.)

Evolution is a phenomenon at work on a partial level.  It is working in instances of pertinent similar organisms.  I believe in a biological evolution for organisms which are simple.  These include single celled organisms like protists and bacteria.  This was God's plan for their survival.  Taking away this mechanism would lead to extinction.  To pristine organisms such changes to environment leaves them perishable easily.  Reasonably under the selectionary process of evolution, simple species can momentarily adapt to environmental pressures.  An example is new strains of bacteria.  Bacteria can develop resistance so they don't die out forever.  Bacteria are useful in many ways.  Without them, no other organisms could exist.  That is why evolution happens under God's design.  

I believe larger organisms were specially designed by God in the way we see them.  They easily exist at God's command.  God purposefully made each thing out of nothing to please Himself and have a relationship with Him.  I am attracted by God´s creation to seek Him and His natural laws.  Einstein uncovered such amazing order.  I am easily moved to praise God for caring to bear love on us.  I am made by God as He intended.  He made me Autistic as a way to tether me to Him.  He causes me to depend on Him always.  I am specially made by God to glorify Him through my life with autism.  I appear not to be useful to people but people like me think out of the box and help society see a new point of view. Temple Grandin sees in pictures and knows cows like no one else.  I seem aloof but I notice everything.  I appear not listening but I hear it all.  Time goes on and people like me keep being born. There are more of us each year.  How does evolution easily explain this?  I believe God has a purpose for us to improve mankind to cause another movement toward a society of special needs acceptance. I tried to understand evolution for humans but people are made in God's image.  They can't be related to other animals.  I think it is wrong to make the popular assumption that we evolved from a common ancestor as monkeys.  In doing so, each person is denied dignity.  The reason to protect the vulnerable is gone.  I would not survive.

Tuesday, September 23, 2014

Letter to RPM Peers

Dear Each One Trying RPM, 
I trust you are very smart.  You have potential like anyone else. Heighten your potential by practicing writing your opinions of the world.  If you are just starting, know you earn your true voice by practicing hard each time possible.  You have to be patient learning step by step.  You have to be a person never giving up.  When I first started I thought it was so hard.  I hardly took real lessons before. I loved real learning but the showing what I knew was tiring.  I had mom each day taming my impulses from doing what came naturally for many years.  It took so much energy but it was worth getting my thoughts out.  I would often have meltdowns.  I am getting purposeful movement more with each passing year.   Follow your teachers and try to push yourself up further than yesterday and you will put yourself in a place where you can be free. 
From, 
Philip
Not being able to speak is not the same as not having anything to say.