Thursday, September 22, 2016

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


Wednesday, August 31, 2016

Biking For Life


I love to ride my bike. Learning to ride a bike is one of the best things I ever did. I learned last summer at iCan Shine bike camp (click here to read more about it). I went for one week. I did my best. I learned to ride without training wheels. It was exhilarating. When camp was done, mom bought a bike for me. I loved my blue bike. I practiced everyday. I made good progress. I meaningfully tried to make biking my hobby. I wanted to make my body perform a useful skill. I found that practice riding helped me gear my body for other motor skills. Naturally I don’t feel my body well. I dearly need sensory input to feel my body’s weight. Bike riding provides lots of muscle stimulation and practicing good body awareness. Since I learned to bike, I have been able to control my body better and do things more independently. I can now pour my own milk, dress myself, keep myself from running into the street, and help out more around the house. I feel more practical now. I like that I have intelligent thoughts and now my body is starting to catch up with my mind. I mostly love bike riding because it is fun. Making bike riding a part of my life has been so wonderful.


Monday, August 22, 2016

Making Friends

J writes:

Phillip, how do you makes friends? My grandson is 11 and has no friends and is dreading going back to school because kids are mean to him and tease him.  It's heart breaking. Any hints?

To J,
Learning to make friends is hard. Is he interested in anything in particular? Maybe he can make a friend who has the same interests. Talking on-line is also a good way to let a person in your life in a less menacing way. Because you don’t have to worry about eye contact, social manners, and time to respond on-line, it is easier for me to interact on-line. Making friends face-to-face is easier with other autistics that understand. It gets easier with lots of time hanging out. I love having friends. Meaningful memories come from being with my friends. I get lots of practice making friends because my mom and her friends get us kids together. I love that meaningful friends can make my life more fun. Good luck to your grandson this school year. May he find a good friend.

Love,
Philip

Me and some of my RPM Friends in Buffalo

Wednesday, August 10, 2016

My Time in Maryland (ICI Conference)

Me and Diego

Two weeks ago I attended ICI in Maryland. ICI means Institute on Communication and Inclusion. Making learning about autistic means to inclusion pleases me. I met Diego, his mom Edlyn, and his helper. It was fun hanging out. One of my favorite days was when I got to type with Michael and Camille. We typed about the ABCs of inclusion. Inclusion is so important. Elizabeth cared about our group and loved what we wrote. I am pleased she wanted to talk with me and held my keyboard even though she never met me before. She had confidence in me and her ability to talk with me.

Me and Elizabeth (practicing independence)

Good meaningful lectures peacefully made me take note of what I would like to achieve too, like doing a talk. I would also like the ability to type more independently. Lots of time and practice needs to be invested to get good. Part of my learning was getting to practice more stressful environments. I want to get better at sitting quietly and not being disruptive. I get mad at myself for being too noisy when stressed. Peace often escapes me in crowds and loud places. I was managing as best I could. Life day to day can be unpredictable. Sometimes I am in more control of my body. Other days I can hardly feel my body. It is the worst feeling to feel weightless. I hate being practically disembodied. It becomes a nightmare. Stimming helps feel my body again.

Part of a big drum circle


On day 1 I could not stay calm. I needed to stim badly to feel my body. Help came from Casey. She gave me a massage and sang to me. Casey saved my day. I sat more calmly after that. On day 2 I had my best day. I loved that I could participate and meet new friends. Making friends was the best part of the conference. I will remember talking to Diego, Michael, Camille, and Elizabeth as the highlight of the week.

Michael, Camille, and Me

ABC's of Inclusion
by Philip, Michael, and Camille


Actual inclusion opens doors.
Be patient with us. 
Caring people make it successful.    
Don't give up.
Excellent expectations. 
Friends, need I say more?    
Give us lots of patient encouragement.
Hear us when we spell. 
In day, talking to friends opens my world.      
Just like typically functioning,need support.
Keep believing in us. 
Learn challenging subjects. 
Must be proud.
No baby talk. 
Open hearts please us.       
Praise our achievements as they are yours as well.
Question your assumptions. 
Remember we are just like you.
Spelling is our way out.
Treat us with respect.  
Understand totally intelligent and eager to learn.
Voices must be heard.      
Wait for us to finish our thoughts. 
Xylophone can't make open words and it still is in the orchestra.
You are needed for our success. 
Zero tolerance for non believers.