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.

Trauma

Ms. A writes:

My 12 yr old autistic daughter has had a rough year. This summer she broke her foot at the pool. After starting school on crutches, she was hit by a door when another student pushed it open. This caused a concussion. She has really struggled with controlling meltdowns and other stress reactions. She is starting to feel better, and is attending a full day of school again. But has started damaging things at home after a meltdown. She has never done this before. She is usually a sweet and very helpful girl. I was hoping you might understand what she is feeling and offer some insight.

Hi Ms. A,

People like me may have severe reactions to trauma. In my life I have many fears related to past experiences. When I was little I once had a cold shower. I was so traumatized by the feeling of the cold water raining like hail on my body that I have not taken a shower since. I am still fearful someone might accidentally turn on the shower while I am in the tub. People need to know that autistics have intense memories of lots of things. Your daughter had 2 traumatic experiences in a short amount of time. I think your daughter is having her fears take control over her. She has had some big accidents happen to her body. This would cause me tremendous anxiety. I am paralyzed by fear when I remember something awful. People need to know mean sensations can come while thinking about a past bad experience. Mean sensations are like mighty attacks of war on my stomach or head. I sometimes feel like I might die. It is the worst feeling. Peace comes when I am left alone to rest until the feeling passes. Make your daughter understand she is loved and that you are not mad at her.

I can eventually lessen the effects of trauma. For example, when I was 9 I went to bike camp for the first time. I was doing well, but on the last day I fell. I did not want to go on a bike for years. But mom signed me up for bike camp again when I was 12. This time I could communicate. Being able to communicate has helped me not be as anxious to trace a trauma to my memory. I can peacefully process my feelings. With people knowing I am smart and capable, I can trust them to help me do something that makes me nervous. Now I love to ride my bike.

I wish you and your daughter the best.

Love,

Philip

Acoustics- A Music Teacher's Question

A writes:

I am going to be graduating with a music education degree in May and I am hoping to get a job at a middle school teaching beginning band. My question is what could I as a teacher do in that environment to help autistic kids who want to learn instruments, but may get overwhelmed by all of the stimuli going on in the room? What do you think would help you in that situation? Love your blog! Just discovered it yesterday and have been reading it nonstop. It helped me understand some of the autistic students I have had in the past better.

A

Philip writes:

I am a lover of music. Music plays a mighty role in my life. I am moved by a beautiful song. I am moved by melodies and good lyrics. Music is loved but sometimes it can be too loud. I am very sensitive to sound. Acoustics play a role. I have apprehension when I enter a room with hard floors and walls.  Loud sounds bounce piercing frequencies. They kill my peaceful enjoyment of music.  I feel like a glass man easily shattered by active waves of giant sound. However, I do not want to be this fearful. I toughen up by facing my fears. I am losing my sensitivity to loud places by going to them more often. I can go in church. I can go in a gym and to movies.  To face a hard environment, I am mindful of me wanting to participate. I tell myself that man attains nothing by allowing his surroundings real power to stop him from what he wants to do. I try to withstand the sensory torment by stimming to calm my nerves. In my quest to socialize I make my stims try to blend in.  I cover my stims by whispering to myself my own song to try to calm down. My advice to kids who want to learn an instrument but get overloaded is to master his fear by telling himself peace will be limited if you avoid everything that brings apprehension. To put fear to rest, address the job of meeting his goal. Make a plan to get there. Get help if needed. Learn to adapt.  And when you conquer your fear, and achieve your goal, you will achieve true peace.

You can help your students by asking them if they can tolerate auditoriums. If they can't but still want to learn, may they wear noise-cancelling headphones? You can also try to gradually expose them to the auditorium. I am peaceful in the auditorium after a year of trying little by little. Patient teachers are the best.

Philip's favorite instrument is the piano.  He can't play yet, but maybe in the future...

Moses and Fear

As I wrote in yesterday’s post, Philip wanted me to teach him a lesson on facing fears over the weekend.  It just so happened that today I was leafing through Philip’s Stockade achievement book and the next activity was called “Controlling Your Fears.”  It was a lesson on Moses.  It was one of those little moments when you feel God’s smile and wink in your direction as He gifts you a little surprise.

I read Philip the story of Moses from Exodus 3 and 4.  It is the story of God calling Moses from the burning bush to send him to Pharoah to deliver the Israelites out of slavery in Egypt and into the Promised Land.  Moses was understandably intimidated by this tall order and kept coming back to God with excuses, even to the point of pleading, “O Lord, please send someone else to do it!”  

We began talking about fear as a natural part in everybody’s lives.  Fear can be good because it helps us to think before we act and avoid doing something stupid or dangerous.  But fear can be harmful if it keeps us from doing good things, including what God would want us to do.  We read from Exodus and then Philip answered the following:

When does Moses begin to be afraid? (Philip's answers in bold)

He began to be afraid when he hears God in the burning bush.  God says he was going to rescue His people.  It made him feel like he was solely responsible for all the people.  He was scared.  I am sure I would be scared too.

 

How does God comfort Moses?

God said “I will be with you.”  He is I AM.  He is timeless.  

In Exodus 4:13, why is Moses saying no to God? 

I think he is thinking he is not good enough to accomplish God’s plan too well.

What would be different if Moses trusted God?

He would be brave.

What would have happened if Moses let fear get in the way of doing God’s plan?

He would not see God’s glory.

How did God help Moses conquer his fear?

God answered Moses by letting him have Aaron to help him speak to Pharoah.  God gave him signs to show His power.  God gave His word.

What are some of your fears?

I am fearful of a hard life as an autistic.  I am tired from living in a world made for normal people.  I am tired of word spelling to talk when others get to talk normally.  I am sorely lonely.

  

I fear total elimination of autistics due to illness prevention programs.  Autism is not an illness.  It is a variation of humanness.  I do not want to be cured bc to be cured means to die.  There is too much talk about cure.  It is hurtful.  It makes me feel worthless.  It makes me feel so sad.

I fear the kind of learning most autistics get.  I am fearful that they won’t be educated to address important skills to understand the world and get a chance to communicate.  I fear they will get hurt by restraints.  I fear they will get nowhere.  No way out.  I fear they are so sad.  I fear there is no hope.  I fear they will die without a trace.  I fear they are terrified by the teachers who do not know they are smart.  Each day I yearn to help them.

How does God help you with your fears?

God helps me care about others to help them.  He works to help bring me to people who can help me.  He lead me to Soma coupled with Tracy, Harvey, and Lisa.  He answers my prayers to speak and learn.  God is my Savior and Lord.  He is always with me.  I do not have to be afraid with God.  He is my courage and strength.  I am blessed.  The end.

     

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