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.

Meltdowns and Shutdowns at School

(Lisa's note:  Philip has come a looonng way since starting at public school 2 and half years ago.  At his school's open house, all his teachers had great things to say about how he is doing.  Philip's home base is the autism classroom.  The teacher is trying to help all his students come up with a calming ritual for when they do have trouble keeping it together in school.  He asked Philip if he had any insights into this matter.)

I would like to explain meltdowns in the classroom. Meltdowns can happen for various reasons. Peace to me feels like being able to control my body the way I want to. I have a hard time controlling my body. It does not obey my mind. It acts like it has a mind of its own. A lot of times it either won’t move when I want it to or it won’t stop doing what I don’t want it to do. Faring well at school requires me to keep my body in control for long periods of time.

I am addressing my senses all the time. Loud, echoing sounds and high-pitched cries particularly cause me distress. I mean to turn off the stimuli and focus on what I should. But it is hard. I want to not disturb people so much with my autistic actions. I am powerless to stop my various noises. I am geared to move all the time. I know I can be annoying.

Making myself quiet and still takes all the energy I have.  When I no longer can take trying to control myself, I crash. I have to shut down or melt down. A shutdown is when I cannot function. I mean to participate but I cannot get myself to do it. A meltdown is when my body discharges all its negative energy in the worst ways. My worst fear is having a meltdown and doing something embarrassing. Sometimes I cry and make a scene. Other times I get aggressive. I hate when I hurt or scare people in a meltdown. I want to be able to cope better so I can avoid shutdowns and meltdowns.

My teacher at school is helping me find a coping routine. I work hard and very long at school. I love it there. I learn meaningful things. I make friends. I can try to give thanks. I can pray. Learning to cope better will help me a lot in life. Do you have a coping routine that works for you?

Peace,
Philip

Copyright 2016 Philip Reyes.  All rights reserved.

Meltdowns

Meltdowns cause me a lot of problems. Meltdowns occur when I can no longer meet the demands made on me. A meltdown can be very terrifying. I cannot control myself at all when I have a meltdown. Anticipating meltdowns often keeps me from participating in life as much as I want.

When I was in Canada last week I had a meltdown while going on a hike. I love nature and walking. But this time there were many people. I had to keep up with the big group. My mom kept yelling to hurry up and we might get lost if we didn’t stay together. I made an effort to make my body keep up. I badly wanted to press on. I lagged behind though. Making it worse was the bugs and heat. I tried to later rest but mom was impatient to go. Peace drained out of me. My walk was no longer enjoyable. I could no longer meet my mom’s demands. I began to lose control of my body. I could not breathe. I fell in the road queasy and completely unable to function. My family began yelling for me to get up but I could not, even though I wanted to. I was very paralyzed. Mom tried to lift me but paralysis left me hanging from her arms like dead weight. I meant to make my body move but the more it did not. Mom dragged me to the side of the road. All I could do was lie there until someone could pick me up and take me to a place where I could regain my feeling of wellbeing. Reconnecting to the world after a meltdown happens when I can meet peace and quiet. Making more demands on me makes it much harder for me to recover.

Practicing my ability to withstand more stressful situations and remain calm is a goal. I can try to let myself participate more and not be blocked by anticipating the worst. Peaceful memories live in my mind of times I have participated. I naturally mean to participate but I cannot do it easily. I mean to make fears less and make more good memories.

Copyright 2016 Philip Reyes.  All rights reserved.

Philip's Responses on Movement, Meltdowns, and Stims

Thanks for your questions.  We invite you to keep them coming.  You can private message Philip and me on his Facebook page at www.facebook.com/faithhopeloveautism if you want your question anonymous.

AD writes: Hi Philip. My name is AD. I am a student in college learning to do RPM with another really awesome boy who's name is also Philip! I'm just learning so I am not that great yet but sometimes Philip and I have not so great days where he doesn't want to sit and he runs away and I can't get him to keep on learning. Does this mean he does not want to learn or is this something he can't help? What are some things I can do to keep helping him? I read your messages to other people a lot and they are my favorite things to read. Thanks for all your help and advice Philip. You are doing great things for the world, you are like a superhero!

to ms. D, i am glad you wrote. i believe philip is running away because he is having a hard time controlling his body or anxiety. this doesn't mean he wants to stop learning. he wants you to keep teaching patiently. love him enough to follow him if necessary. my mom still has to do this for me. i slowly type still because i move so much. i hope he stays the caring boy to continue rpm. 
sometimes i am needing a break if i get in meltdown. the meltdown comes from pet peeves of people yelling at me or tons of stimuli or emotions. i mean to not be a mean boy in meltdown so its better to leave me safely to rest when in meltdown. move away from me but check on me. i am not wanting to hurt people. mom has learned the hard way. i am ready to work again once i am calm.
from, philip

Hi AD- Here are a couple other previous blog posts which might shed light on a new student/teacher relationship as well.  -Lisa
The Miracle Worker
RPM- Getting Over the Hump

A mom writes: Philip recently wrote about impulses vs. stims. My son has a ton of things that he can stim on and he received new "stim toys" for Christmas, yet he still wants to stim on off limits items like my jewelry (he will get into my jewelry box and scatter it everywhere), my scarves (he received his own scarves for Christmas), cords for electronics, etc. Do you have any suggestions on what we can do about this? We certainly understand the need for stimming, but we would like for him to do it with his own items (not ones that he could possibly damage).

hi. i have been cause of the same problem at my house. i like certain objects that i stim on. i choose them with care. people cannot substitute them easily. many times i look for the same object because my attention is focused on it. i believe not allowing access to the means of obtaining off-limit objects is the best solution. 

In Corrales, New Mexico over Christmas break

Stress

This past weekend began with a trip to the AMC sensory friendly showing of the movie Muppets Most Wanted.  Throughout the movie, I had sensed Philip was not as into this movie as some of the others.  I wasn’t sure why.  I myself didn’t find it too enjoyable because they had the volume turned down too low for me to hear comfortably with all the noise around me from the people watching.  I had to strain my ears to concentrate on what was being said in the film.  Philip also kept telling me he had to go to the bathroom which annoyed me.

 

When we got home I decided to have Philip practice typing by giving me his impressions of the movie.  In the past he has written a movie review, but this time he took his writing a different direction.  I asked Philip, “What did you think of the movie?”

Philip typed out his response with my support on his forearm giving backward resistance and resetting his arm to a neutral position with each letter.  The typing was much slower than his spelling on the letterboard as he would often miss his target key one key off and self-correct his mistakes.  I did not provide any verbal cuing except an occasional comment to think about the target letter before aiming after several missed hits. (Philip’s answers in bold)  

Philip typed:  I liked it.  I thought I pleaded less to our noise to tension in the theater.  I feel peoples tension a lot.  Under the duress of the territorial pull of the theater youth who do not have right to do fc or rpm.

(Philip explained the above statement a day later on his letterboard, "I am sensitive to peoples emotions and it sometimes overwhelms me."  So you can feel the emotion of the people in the theater?  "Yes.  They have tough lives.") 

I continued the initial conversation on the letterboard, Philip's primary mode of commnication, and asked Philip, “What is your experience at the sensory friendly films?”

I feel stressed bc I am sad kids cannot communicate.  

“Which movies do you prefer to go to then, regular showings (we had seen Lego movie at a regular showing over mid-winter break) or sensory friendly?”

Regular.

I then asked Philip if he wanted to write a movie review or do a lesson.  He spelled on his board, “I want you to teach me a lesson.”  “On what?” I asked.  “About facing fears,” he spelled.  I wasn’t sure how to come up with a lesson on that topic on the fly, so I resorted to my go-to, fall-back lesson planner, Brain Pop on my iPad.  I looked up the lessons in the health section and saw there was one on Stress.  That seems the closest in category so we watched the lesson together and Philip took the quiz and got 80%.

I planned to use the lesson as a springboard for typing practice.  I thought Philip might simply type answers to reiterate what was talked about in the lesson, but again, Philip had his own ideas.

At his desk with the iPad, I asked Philip, “What is a synonym for stress?”  Philip typed: autism.

“Name me some symptoms of stress.”  Philip typed: you utter nonsense too much, intermittent petulance, intense tantrums, urination too much

As Philip began to show irritation, I asked Philip what was the matter.  He spelled, I am tired from typing.

Later on I asked Philip if he wanted to continue our discussion on stress and whether he wanted to type or use his letterboard.  “Yes” he wanted to continue and with his “letterboard.”

Philip added the following symptoms of stress:  head banging, so pitiful whining, mouth objects.  I am tense about sounds.  I am petulant to accept help.  I am leaving in so far that nothing matters except escaping fear.  I am kind of mean to people by pulling their clothes.  

“What are some things that cause you stress?”

Not talking, tons of noise, typing on iPad.  When I have to get a haricut.  To sit still is so hard (in regards to haircuts).  I might get hurt.  Each day I am tore apart by tons of nots.  (“What do you mean by that?”) I cannot do a lot of things normal kids can do.  

“What are some things you want to do that normal kids do?”

I want to learn normally.  I want to play sometimes too.  Make friends.

“What things help deal with stress or make you feel better?”

Patience.  Meeting a goal to increase independence.  I am liking (my teacher’s) exercises to address learning.  Stories about people overcoming.  Not fearing the future.  The likes on facebook.  The notes from people reading my blog.  Each day mom talking to me.  Time to veryis (various) teachings about different topics to learn about the world.

      

 Our first sensory friendly film seen (Planes) from last summer