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.

Ask Philip

For those of you who don't already know, Philip has a Facebook page in which he writes shorter "status updates" than the ones here on the blog.  You can reach his page at https://www.facebook.com/faithhopeloveautism.

Over the weekend he wrote this update: I pour my heart out in my blog. I put lots of thought into what I write. Please write me about your questions. I would like to answer them. 

So we invite you to ask Philip your questions here or his Facebook page by leaving a comment.  He may not be able to get to them right away, but he wants to try his best to help others understand autism and what it is like to live as he does.

Philip answered 2 questions over the weekend.  

SC writes: Philip, my son 8 year old son Ryan and i have been doing RPM for over a year now. He is doing very well, but he does not seem to enjoy lessons with me as much as I would hope. Lately, I have been having to pick him up to bring him to the table for our lessons. He still does well with the lessons and spelling, but he always points to the timer or tries to escape. Do you have any suggestions on how to encourage him to want to do the lessons with me?

to ms. c, a lot of times my mom has to push me too. i can be not wanting to do work, caring instead to stim. but i am happy she pushes or i would not be where i am today. can you make a lesson on something keanly related to his interests or people who are inspiring? people who inspire me are malala, scientists, presidents, and autistics like ido and naoki. i hope i am able to help. from, philip

LC writes: Love your blog, Philip, and I read it religiously. Thank you for inviting questions...i know you put all your heart into your blog, and I know how much work it takes to type/point each letter of the alphabet, so I always hesitate to ask questions of my autistic heroes (Yourself included). But here is one: what sorts of things might help integrate your senses to facilitate learning? For example, Sydney Edmond uses Irlen lenses, several students have a preference for one color letter board over another color, one friend of mine can be calmed by the smell of lavender essential oil. Am I making a mistaken assumption here that colors and scents help integrate senses? Or are they merely a way to calm an overwhelmed sensory system?

to ms. c, i am answering from my own experience. my senses work without stopping. i do not need integration of my senses. my hearing is too much. i listen well and can locate voices even when mixed. i get a little overwhelmed. i can hear in the next room. i hear noise always. it makes me move to block out noise. the people whom i learn from best let me stim. kind easing talking puts me at peace. i think i have normal sight but i each day get attracted to certain objects and get distracted. for example each day when i see a straw i have to pick it up and twirl it. i mean to make each distraction less. some nice sensations like music, exercise, and water help calm me. i like to smell nice soap. i like a time to teach you about me. from, philip

When asked about whether different colored letter boards helped, Philip replied on his letter board: SOMETIMES I WOULD LIKE TO USE A BLUE LETTERBOARD BECAUSE IT IS MY FAVORITE COLOR. (Btw, he does not have a blue one, but maybe he will get one for his birthday. -Lisa)

Getting ready to go sledding in Angel Fire, New Mexico

Sensory Diet

Anyone who has ever met Philip for even a brief moment knows he is one energetic kid.  Some of the things people have said about him regarding his energy are: “He’s got ants in his pants,” “I wish I could harness that energy.  It could power my home,” “He just keeps going and going.  He’s the Energizer Bunny,” and my own expression, “Philip, you are full of lightning bolts.”  When Philip transitioned to public school, I quickly realized that the academics was going to be the easy part.  The hard part was going to be sensory issues, impulse control, and keeping it together to avoid meltdowns for a variety of reasons.  Philip’s teachers have been remarkable for working on all the components Philip needs to succeed in school and life.  Not only have they been teaching Philip age appropriate academics and allowing him to communicate with his letterboard, they have also been working hard to learn Philip’s sensory needs to help him stay focused and calm.  They have incorporated “sensory breaks” like exercising with weights and allowing Philip to listen to music on his headphones.  Two days ago, Philip’s teacher wrote a note asking me what sensory materials Philip would seek out so he could incorporate them and fine tune his sensory diet.

“Sensory diet” is a term that was first coined by an occupational therapist named Patricia Wilbarger.  It is an individualized schedule of sensory activities to help a person optimize their nervous system to concentrate and function properly throughout the day.  Depending on a person’s needs, activities can serve to arouse or calm the nervous system.  In Philip’s case, lots of calming activities serve him best.  I will be honest; in the past I did not put much stock in the sensory integration component of autism.  I am only recently investigating it and seeing its very real importance.

One of the great things about Philip being able to communicate is that I no longer have to guess about Philip’s needs.  I can simply ask him.  So I asked him what he felt his body needed to stay regulated so he could function best at school.  Our conversation went as follows:

Lisa: What is body regulation?

Philip:  It means my body is in tune with my mind.

L:  When is your body most regulated?

P:  When I am solidly placed in my surroundings.  It helps to meet my senses leading me like smell and touch and mouthing things.

L:  Do you need a sensory diet?

P:  I need a sensory diet badly.

L:  What things will help?

P:  Doing exercises.  I understand weights set me at ease.  Need muscle power to achieve more noticeable body awareness.  Weight bearing like lifting and pulling.

Quiet time relaxes me.

Meeting water.

L:  Like swimming?

P: Yes.

P: Smelling will be helpful for learning.  Some candles can be useful.  (my note- Philip often likes smelling people’s perfume or deodorant and the candle in our bathroom). 

L:  What scents?

P:  A beach candle (the scent of our bathroom candle) or a pear candle.

L:  How do smells help?

P:  Smells are useful for mental health.  Some smells are healing from treason of body.

L:  What is treason of body?

P:  When my body is out of control from mean sensations.

After having this conversation with Philip, I decided to help his teachers out by buying some of these things to help make up Philip’s sensory diet.  The teachers already had weights, so I bought a resistance band to incorporate pulling exercises.  I also went to Yankee Candle to buy some tea lights with relaxing beach scents and fruit scents.  I packed his backpack with these and a copy of our conversation so the teachers would know Philip’s sensory needs in his own words.  

Philip also wrote yesterday morning.  “I need to engage my senses to learn about my placement in my surroundings.  I need a sensory diet to get my bearings.  Each day my body makes improvements in finding itself.  I love my senses.  They help me a lot.  I am eager to verily make improvements at school with my sensory diet.”  

After writing, Philip did some bouncing on his yoga ball, 10 sit-ups, and 10 weight lifts before getting on the bus to go to school.  

When Philip returned from school, I received one of the best notes from his teacher ever!  His teacher thanked me for sending the materials and said Philip benefited tremendously.  He had done a great job in all his work and got the rare “GREAT” day circled (1 of only 2 times I can remember from a 4 point scale from 1 being poor to 4 being great).  It was exciting to see how well Philip did and to discover yet another way to help him.     

       

 April 2014