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.

Advice for Teachers

A writes:

Hello Phillip and mom. It’s me the OT again in need of some advice. Hoping you all are doing well. So I am still working with my friend, who is non-verbal, but very much aware of EVERYTHING. He is almost 5 years old and is really starting to buck the system. I have taken your advice very seriously and have been working with him on purposeful motor activities, which he usually gets mad at me for, pinching me and pushing his head into my face. I always tell him that I understand that this is hard, but I know he can do it. Please advise....what is the most encouraging way that you have had someone working with you be?  I don't want him to not want to come to therapy, but I also don't want to be a disservice and not help him to be more than he knows he can be... Understand that most of our session is way fun...it's just those moments...

I would like to tell you about people who make good teachers. People who are nice, patient, and understanding make the best teachers. I mean to help the caring teachers be more effective at helping us. I owe a debt of gratitude to all my teachers. I love learning. I try to learn from everyone.  My teachers make my learning interesting by acting interested in what they teach.

I hope you are becoming more aware of the reasons behind your students’ behaviors. When I get overwhelmed with stress I am more likely to act impulsively. I stress when I am in new situations. I stress when I feel I am not in control of my body. The fear of acting badly is often a source of anxiety too. My body acts with a mind of its own. I never mean to hurt or annoy people. I should learn to better meet stressful situations. I can take deep breaths. I can pray.

I need patient and kind teachers who know I am not trying to be bad. The people who can wait for me to do things on my own time are the best. This does not mean I should not be pushed. I need to be pushed or else I could not progress. What I need is someone who can help me be successful at being my best at that time. Teachers cannot get me to do what I am incapable to do yet. But they should be patient to let me keep trying because some day I might get it. Please try not to get frustrated with me. I know I can be hard to understand.

I think the best way to deal with behaviors is not letting them make you hardened toward me. I do these things because I get anxious, scared, or feel out of control or overwhelmed. Try to understand. Try not to get mad at me. Try to keep me calm by being a calming person. Be encouraging and persistent. Learn from me too. Push me more but not in a mean way. Mean manners make me more upset. Be a good person to me and you will so win my trust and hard work, but know I still have my limits. I badly want to learn and progress. Meaningful relationships with my teachers are ones in which my teachers know I am smart and push me to do more in a gentle and understanding manner. I love when I learn something new. I need teachers.

Philip

Copyright 2016 Philip Reyes.  All rights reserved.

A Teacher's Question

SS writes:

Dear Philip,

I read in your blog how much you dislike it when people talk as if you are not there. I am a drama teacher, and I have students with autism in my class. I often have trouble knowing how to help my other students understand how to communicate with my autistic students without feeling as if I am doing that very thing - speaking as if they are not in the room. Can you help me with this? Thank you!

To Ms. S,

I am going to tell you this story. Before in school I caught teachers talking about each student each day as if we were not listening. They said poor things about us. They said we are lazy and defiant. I heard a lot in school I am not smart. It was awful to imagine they assumed I am retarded. I felt so small. I am now at a regular school.  Teachers now know I am smart. They talk to me and not about me. I am much happier now.

You can write a letter to your regular students to introduce your autistic students. Tell them we are smart and to speak normally to us even if we don't respond like a normal person. We are listening. We love friends too.

From,

Philip

A classroom in California greets its students and all who enter with Philip's words:

"Today try to make our lives better by understanding us and accepting us as we are.  Include us in your lives.  Talk to us even if we don't respond.  We are listening.  

I am storing up happy memories with every person's kindness."  

Amazing Teachers/ Guest Blogger Lenae Crandall

This past year I have had the privilege to get to know many people like myself who support Autistic individuals in their education and communication using letterboards, iPads, and keyboards.  Most are also parents of Autistic kids, but a handful are not.  They are a select few teachers, speech pathologists, and aides who have found great joy, purpose, and fulfillment in helping other people's children find their voices.  What is amazing is that they are equally as passionate as parents, perhaps even more so as they get to make a difference in many lives.  Oftentimes these professionals have faced ridicule and dismissal among their peers because what they do is so contrary to what they were taught and trained to do in their profession.  BUT they continue on because what they do works!  The satisfaction they get from their students' success far outweighs anything else.  You will never find more excited, compassionate, and effective teachers as these!  They are the game changers.  I have faith that someday the rest of their professions will have to catch up with them and we will live in a world where all Autistic people will be heard and will be seen for who they truly are.  

Two of the amazing teachers (and there are more out there!) I want to highlight are Elizabeth Vosseller and Lenae Crandall.  Elizabeth Vosseller is a pediatric speech pathologist and owner/ director of Growing Kids Therapy Center in Herndon Virginia.  She recently included RPM into her practice and is seeing amazing results.  Her love and excitement for "her kids" is palpable as she describes their breakthroughs and progress in her blog at www.growingkidstherapy.wordpress.com.  I will feature her in a future post.

The other amazing teacher is Lenae Crandall.  Lenae Crandall is a certified special education teacher and founder/ director of Hope, Expression, and Education for Individuals with Severe Disabilities (HEED) (click here for link to website) which is based in Utah County.  She left a traditional special education classroom to pursue doing RPM with her students full time and has never looked back.  She has a heart of gold for the kids and families she serves.  Many of her students have blogs which are listed in the Profiles tab and sidebar of my blog.  Without further a due, I would like to introduce Lenae as my first ever guest blogger!

By Lenae Crandall

The Jefferson memorial in Washington DC has a quote: "I have sworn upon the altar of God eternal hostility against every form of tyranny over the mind of man."  One day I was conversing with an educational leader. This leader made the statement to me that I should be focusing on “functional skills” and so math instruction should look like counting while helping the child to brush his/her teeth. I was told that I should focus on teaching my students how to eat with a spoon over academics because parents don’t work on those things with their children. While I agreed that teeth brushing, eating with a spoon and other functional activities are very important, I left that day thinking about this Jefferson quote. I thought, “I will be fired before I ever deprive my students of important skills like reading and access to the world. I will fight against tyranny over my students’ minds”

This quote has defined my teaching career. I believe strongly in the education of ALL individuals. I believe in the capacity of EVERY human to learn and progress.  Being religious I firmly believe all human beings were sent to earth with specific talents, purposes, and with a divine nature and worth. I believe that NO person was sent to fail or simply exist. 

Because of these beliefs, my journey as a teacher has been to do what I can to unlock the doors that trap my students inside their bodies. Yes my students can move, but doesn’t mean they can verbally express what they want to say when they want to say it or do things on cue. 

In the beginning of my career I was powered by the belief that all students could learn to read. I believed it to be the gateway to opportunity to learn to read. Reading opened doors to knowledge and communication. This was my first focus. 

As I taught, I found my students were brilliant. I began developing or adapting tests so my students could respond. I saw they had the easiest time simply touching or pointing to an answer. I found my students-whom many thought couldn’t learn to read (and thought I was a bit nuts)- not only could learn how to read, but many were already reading and doing complex skills that they had learned from listening when others didn’t think they were listening, or self-taught in some way.

I realized since they were so intelligent that I needed to find a way for them to be able to communicate all these thoughts and therefore have fulfilling lives. Where would I turn?

One day I was re-reading “The Mind Tree” by Tito Mukhopadhyay. Tito is functionally non-speaking and Autistic. His mother taught him and believed in him until he could write out his thoughts. This was his first book written between the ages of 7 and 11years old. 

As I read I realized that his mother had figured out how to break him free in so many ways, yet he still had the strengths that come with being Autistic! Where was she? I needed to find her! She had the answers I needed. I typed her name, Soma, in online to see if there was anything about her. I would like to meet her, talk to her, pay her to train me how!

I found her at www.halo-soma.org. She has taught over 1,000 children, non-speaking with Autism who many professionals said were severely intellectually disabled.  She teaches students academics so they can access the world and they also learn to communicate. They start by picking choices (learn how to choose and what to choose) and then progress to spelling out answers by pointing to letters on a letter board (laminated piece of paper with letters a-z on it).

I began with my students. I wasn’t great at it at all at first, but  I was so excited to see them point to their first letters to spell words showing they were reading!!!! But, now I had another challenge. Some professionals thought I was already nuts to believe they could learn basic early reading skills. Now I was claiming intelligence at likely normal to gifted levels. I had to keep on going.

Now I have students who are spelling thoughts to me like:

1- “I read. I can communicate. Mom, understands how to help me!”  

2- Student note to parent, “It is just rotten my own room is so small.”   

3- Student note to Dad: “Love you.”

4- Me: What do you want professionals to know about you?

Student: “I know a lot.”

5- Me: What do you want most in life?

Student Spells: “Help lonely people”

They answer questions about all different subjects. They (I) have work to do to fully communicate, but they now can have goals and dreams for their life. One of my students asked if I taught drama. I told him I didn’t, but did he want to learn?  He wants to be a play writ and learn to act. Being a play writ is a realistic possibility. He now can have dreams!

I see hope in many of my student’s eyes, they are happier, they can have fulfilling lives if they are given continued chances to keep progressing and learning beyond “functional skills.”