Middle School: My Transition to Society

Simone writes: Hi Philip, my son is turning 15 now and he will start attending his first regular class next school year.  Can you share your experience and also give us some advice based on your own transition?

Transitioning from my autism school to regular school was a long process. I wanted to learn more interesting things than my autism school had to offer. I looked for more challenges to keep my mind sharp and active.  I wanted a regular education. I wanted to be like my siblings getting interesting things to learn about.  

I am learning to be patient about reaching my goals. Being in a body like mine is difficult. My body is geared as one built for another planet besides Earth. I have a difficult time feeling my body in space. I feel as if I don’t have weight.  I need a lot more sensory input than most people. I get input by moving, tapping, sniffing, and deep pressure to my body. Once I get calm, I need less input. Teachers learned that I needed sensory input throughout the day so I could feel calmer at school. I was allowed to take walks with my weighted vest before my regular classes. I had times I could have a break for listening to music, rocking on a chair, or smelling nice candles. It was a good thing to have sensory breaks.

I have made a lot of progress throughout my time at Heim Middle. When I look back when I first started in the middle of 5th grade, I am amazed I was not kicked out of the school. I talked less than almost all my autistic classmates. I could not use my letterboard well for my teachers. I got so anxious around everyone because I felt like I was a burden and a nuisance. This led to many meltdowns during my first few months at school. I was frustrated because I wanted to show I was smart and belonged there. But my body was like a wild bull not wanting to obey anyone. I would even make my teachers frightened by my aggressive actions that happened when I became overwhelmed with frustration or anxiety. I am fortunate my teachers put up with me while I was adjusting to a new school.

I got better at managing my body eventually. I learned to realize that even though I felt my body's negative sensations due to anxiety or stress, I could talk to myself about letting it pass without as much negative behavior from me. My mom and I started a morning routine of reading Bible verses and a devotion about it. I would write a morning report about it and post it on Facebook. I came to the realization that I could sit still by concentrating on God’s word and what I learned from it. I could calm my worries.

When I was able to relax more, I started to type much better with teachers. I got used to each person’s style of working with me. I wanted to work harder to be able to participate in regular classes. I was not able to go regularly until grade 7 when I started science, social studies, and technology. I learned to advocate for myself by typing my intentions at my IEP meeting. I almost was denied the opportunity but my speaking up in person made the difference.

My body is still lacking control though I have come very far. Taming my body is more than I can handle alone. That is why I needed an aide at all times. An aide keeps me on task and makes sure I do not get too distracted. I could not get through my days without my amazing aides. I learned to be more disciplined with my body but I know I must continue to work hard at this.

Impulsive behaviors sometimes set back my progress. I sometimes get in a phase of impulsivity where I do irrational things like flipping light switches rapidly or slamming doors. I know it annoys others a lot but I feel compelled to keep doing it. I have learned when I get impulsive, I have to stop what I am doing and question myself why I am doing it. I can sometimes make impulses go away faster now.

I have just finished 8th grade. I participated in my graduation ceremony. I walked across the stage by myself to receive my certificate. It was a very proud moment for me. I even went to the dance after. It was fun. I am going to miss Heim very much.

I am both excited and nervous to start high school.  It will be brand new with different teachers and aides. It is going to be another adjustment but maybe I will be more able to adjust better now. I have gained a lot of wisdom these past few years. I want my high school experience to be as good as middle school.  I hope everyone there will believe in me like my teachers in middle school did.

Philip

Copyright 2017 Philip Reyes.  All rights reserved.

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

Video: Philip Typing About News in Iraq

Transcription:
Lisa: What is going on in Iraq?
Philip: In Iraq there is fighting because Muslim terrorists are openly persecuting the minorities.
L: What should we, as the US, do?
P: I think we should fight to help them.

Philip also typed today:  I want to type well because it is utilized in many situations.  Real world uses the typed word all the time.  For we come to communicate by texts, facebook, and emails.  I am now part of the digital age.

Yes you are Philip!  How exciting it is to see Philip progressing in his knowledge and skills, and becoming more and more included in the greater world.  Philip is the first to tell me he is not exceptional.  He has had the opportunity to learn to communicate because of Soma.  He now wants to make sure all those who cannot effectively speak can have the same chance to communicate through spelling and typing.  Philip wrote on his Facebook page last week:  I am not being notable being a learned kid with autism. There are many like me.  Heading to mean to rescue them from their silence.

*  For those of you wondering, Philip uses the iPad app called Assistive Express and the Apple Bluetooth Keyboard.

Philip's IEP

This past Monday Philip had his annual IEP meeting, his first at his new school.  For those of you not yet initiated into the world of special education, IEP stands for Individualized Education Program.  For the first time, Philip made his own educational desires heard.  This is what he spelled on his letterboard to indicate his goals:

I want to open my time to some science in regular class.  Dare to wax (increase, get better at) talking with typical kids.  Read books for my age.  I want to read on my own.  Type a lot more.  Right my behavior.  Meet better lessons in remaining subjects.  

A week before Philip's official IEP meeting, I got together with his teachers and presented Philip's goals to them.  We discussed Philip's progress, strengths, and challenges.  What was really neat was that Philip's teachers came up with a plan that incorporated all of Philip's goals!  In addition to his specials, next year Philip will be mainstreamed in science.  The remaining classes will be in the autism classroom but will follow the grade level curriculum so that if he is further mainstreamed in subsequent years, he will be on track.  Philip's education will no longer be mostly rote and repetition as it was at his ABA school.  It will challenge his intellect and reasoning.  Even his reading will not be based on how he reads aloud (as he is "non-verbal"- or more accurately non-speaking).  He will be allowed to read silently and then be tested on his comprehension.  Independently manipulating a book is a goal they will also work on.  In math, they will work on using math in practical ways while still hitting grade-level objectives.  In speech, Philip already has student volunteers from general ed to come into his class to converse with him on his letterboard and ipad.  This will continue.  I think Philip's school is really a model for inclusion with gen ed and special ed students mixing on a regular basis.  Philip's teacher said that after reading Philip's letter (click here to read) to his classmates in music, even more kids wanted to volunteer as communication partners in their class.  This past weekend two 7th grade girls who help in class, threw the whole class and their families an end of the year party at their home.  It was a great time!  At the end of the party, Philip thanked and spelled to his hosts about the party, "I LOVED IT."

The way IEPs work is that there are goals set which have measurable criteria with a method and schedule of data collection to determine whether a goal is met.  There are benchmark or intermediate goals along the way.

Philip's annual goals are:

Reading:  After reading/ listening to a 10 sentence passage, Philip will accurately respond to 'wh' questions based on each passage.

Philip will accurately identify the main idea and answer 5 'wh' questions related to a 1-10 sentence passage.

Mathematics:  During real and contrived purchases, Philip will select the correct dollar amount, and use a calculator to find the total paid over two or more consecutive purchases.

Speech/ Language: Philip will generate 3-5 word phrases to share an opinion, make a relevant comment, or reciprocate a question in order to maintain a conversation.

Motor Skills: Using a keyboard, Philip will copy a list of 5 familiar words, given one visual point prompt at the beginning of each word.

I am very excited about Philip's education.  I know he will learn a lot and will enjoy the stimulation of interesting subjects and a productive day.  I hope more schools will move in the direction Philip's school has taken because everyone benefits when each student has access to quality education as well as the chance to participate in a diverse society.

 Philip and his classmates at the End-of-the-Year party 

14 for '14

Happy New Year Everyone!  May 2014 bring you blessings, peace, and prosperity.  I asked Philip if he had any New Year’s resolutions this year.  He didn’t know what resolutions were at first.  I explained they are goals that we are resolute, or determined, to achieve in the new year.  I explained that some people don’t make any because they can be hard to keep.  I expected Philip to maybe have one or two resolutions, but he kept on going until he came up with 14!  It goes to show me how determined he is to set high standards for himself.  My resolution will be to help Philip meet each one.

Here are Philip’s 14 for ’14:

1.        I will assume responsibility for my actions.

2.       I am going to teach RPM to each autistic kid by a) blogging, b) meet with autistic kids more, c) teach teachers, d) answer questions for parents

3.       A lot each day to typing

4.       Go to regular school

5.       Meet more autistic people

6.       Write a book about my life

7.       I will kid around less at school

8.       Have pastimes- avenue of fun

9.       I will practice RPM with other people

10.   I will accept any lasting change to improve the lives of autistics

11.   Accept advances in leading others to find their voices

12.   Accept giving kids a chance to express themselves

13.   To eat less gluten

14.   To attend to other ones that talk tons also (when asked to clarify if he meant he wants to be able to integrate with people who talk, he pointed “Y” for yes)

This is going to be a great year!  

Last night we celebrated New Year’s Eve at a party at our good friend’s Tim and Deb’s home.  I had never seen Philip do so well at a party.  At  times he sat with the adults listening and even answering some questions on his letterboard.  He also spent time with the kids.  Everyone noticed a big change in Philip.  We had a wonderful  and relaxed evening eating, playing games, talking, and toasting the new year.  At bedtime, I asked Philip what he thought of the party.  He spelled, “It was fun.  I am happy I went.”   

2013 was an amazing year.  I have a feeling 2014 is just going to get better!

 Ringing in the New Year with Carlos