The Difficulty of Self-Control

A month ago I asked Philip, “What is the essential feature of your autism?”  Philip replied by spelling on his board, “I CANNOT MAKE MY BODY OBEY MY BRAIN.”  This sentiment has been repeated over and over by autistic people, especially by those who are non-speaking but have found a way to communicate alternatively by spelling on a letterboard or typing.  Yesterday Ariane Zurcher, mother and author of Emma’s Hope Book, wrote a terrific post entitled “When the Body Does not Obey the Mind” (click here to read the entire post).  The post quotes several young people about their experiences living in a body that does not listen to its mind.

I read the post to Philip this afternoon.  I wanted him to know there are many others like him and that he is not alone.  Then I asked if he wanted to share his experiences.  “Y,” he pointed.

I am in a body that does not obey my brain.  I am open minded but my actions are each day searching the peace of mind.  Tons of each day I am so tired from making my body obey my brain.  I am always estimating to overcome an impulse.  Impulses come in many different forms.  I may see food and out of the blue it makes me wholly tuned into it.  I am really too slow in my thinking to stop myself from taking the food.  I feel bad after.  I think I really need to readdress understanding real need to control my body.  I am most in control when I take some words and try to get me to follow it.  I understand a lot of verses from the Bible.  They help me touch mountains of depression and tossed wind of seeking out help.  (“What do you mean by tossed wind?” I inquired).  It means help is like tossed wind because it is hard to grasp.  The adamant art of each day is addressing my self-control by praying to God.  Each day I am eager to accept myself more.  I’m each day seeking others to friend me to let me be myself and not let me accept loneliness.  One day I want to dare myself to be friends with normal kids.    

Each day I am totally stressed about teaching myself to stop impulses.  Impulse to tear teachers apart is the worst.  I get that impulse when I am tired.  Tiredness each day to eat neatly in the cafeteria.  I am tired from noise.  Tired from accepting hard teaching.  I need rest and a break when I get in a meltdown.  I am letting God help me more.  I pray to Him when I am getting tired.  He answers me with a teaching.  It is an understanding of a token verse.  

I had the impulse to tear at Dad because I was tired from trying to type on the iPad.  In a rage I do not know how to stop.  One thing to keep in mind each day is to leave me alone when my body is lashing out so I can pattern my solace to keep calm.  (“What do you mean by ‘pattern my solace’?” I asked).  Ask on bended knee for God’s help. 

I am tired from each day telling myself to stop stims.  It is too onerous to analyze right behavior.  It is hard to coordinate all the things I need to do.  I need to listen.  Then I need to plan my action.  I am tons of work to move appropriately.  I need help to stay on task.  Tired and stressed all the time.  Someone makes leaps to have to reach me.  To better help me one should keep topping me.  (“Can you clarify?”)  They should interest me doing new things.  They should accept no excuses from me, except if I am sensory overloaded.       

Niagara Falls Aquarium

This week we have been going on outings for the kids’ mid-winter break from school.  Philip requested the Aquarium this morning.  We had never been there before so it would be a new adventure for all of us.  However, when we finally got there, upon hearing the water from the outdoor seal fountain, Philip became anxious and ran back to the car.  We tried to coax him to go back so we could go inside but the more he cried.  We did finally make it in.  Here is Philip’s account of our outing.

I enjoyed the aquarium.  At first I listed the reasons I didn’t want to go.  They were crowds, yelling, the waterfall outside was terrifyingly loud.  I was afraid of making others stare at me.  I am of age of being more independent but I need tons of redirecting.  I was each day timing an interest to when there would be less people to annoy.  I am not trying to be one to bother people but end up not being able to help it.  My body has a mind of its own.  I wish I could control it better.  I am getting better intelligence in public places.  I am each day anxious about lots of things.  It is each day hard to flee things that cause anxiety.  I think of ways to calm myself so I can have fun too.  Today I was having a hard time getting down from the car to go to the aquarium.  I was crying a lot because I was tense and petulant (mom wasn’t sure what that word meant so I substituted ‘stubborn.’  Petulant is actually a better fit because it means unreasonably irritable or ill-tempered).  Came so far to see aquarium and I understood Lia would be disappointed.  My mom helped by not getting mad because it would have made it worse.  She responded by playing Beatles to calm me.  Then we ate at McDonald’s.  I felt better so we went back.  Each day I want to conquer my fears like I did today.  Each day I want to enjoy everything to learn because there are tons of cool ideas to think.  I enjoyed the aquarium.  I liked the seals the best.  They swam so peacefully, gliding like planes underwater.  I like the anemone too.  It is pretty.  I liked the penguins.  They are cute.  I think the needed thing missing is a walrus.  Each day I like the people too.  I pretend to be a normal kid at public places.  It is good practice.  I am having more fun out in the world.  You are a good mom for bringing me places.  Thank you.  

*Mom’s note-  I am proud of Philip this week for being able to go on all our outings this week.  Philip has been desiring more and more to do things like typical kids.  Though he has many challenges, he is taking his own initiative to cope and adapt so he can participate.  I am also proud of myself for learning to handle Philip’s challenges better now.  In the past I would have yelled and tried to force Philip to go in screaming.  Or I would have given up too soon, driving home steaming mad about a wasted trip.  I am finding that a combination of patience, kindness, and understanding is the best for everyone.

RPM- Getting Over the Hump

This is a common experience in starting RPM (My experience, but others starting RPM have said they had similar):  When you go see Soma for the first time, you are amazed beyond your wildest dreams of what your son or daughter is capable of doing- learning from grade level material, spelling, adding numbers, taking tests.  It is as if you are seeing your child for the first time.  The world is new and you can’t wait to discover more and more of your child each day.  You come home exhausted, but jubilant.  You show your camp videos to friends and family.  Everyone is in awe.  

The next day you are eager to start the lesson you carefully crafted.  You have the table set up just as Soma did- paper, pencils, tape, stencils, and lesson plan neatly arranged just so.  You bring your child to his “office,” a private nook with few distractions.  You excitedly call to your child, “it’s learning time!” and lead him by the hand to the table.  Your child sits well for about one minute.  Then he starts sliding down his chair.  “Sit back up,” you instruct.  You get to your teaching with choices.  He is getting everything wrong.  You are starting to get frustrated.  “How come you knew this with Soma?” you breathe out loud.  Now your child is no longer pointing with the pencil, but biting it with all his might.  “Give me the pencil,” you half yell, “try again.”  Your child starts to protest, first with a moan, then a full out wail while grabbing your shirt collar.  You get in an all-out wrestle to keep him from ripping your shirt.  You’ve had it and so has your child.  You let him run off while you regain your composure.  You want to cry.  For days, maybe weeks, it goes something like this, until…… (I will resume the story in just a bit)

Philip and I are approaching one year of doing RPM.  It has been the most amazing year.  He has conversations with me daily.  There is a transformation in the household, a feeling of increased closeness between each family member.  Today I asked Philip about the early days of RPM.  I told him I wanted to help another mom understand why her son resists.  

Lisa (Me): Why is it when you worked with Soma you did so well, but when you came home, you didn’t do well at first?

Philip: IT IS TIME TO MESS AROUND.

L:  So you thought home is a place to mess around.  Are you glad that we structured it so that a time at home is for learning too?

P: Y.  IT IS TO MY TALKING THAT ERASES MY NEED TO TEST A MOM.

L:  You were testing me? Why?

P:  I WANTED TO SEE IF YOU STOP

L:  Why? (now it is my turn to be asking why a lot)

P:  AT THE TIME I WANTED TO STOP.

L:  Why did you want to stop?

P:  IT SEEMED TOO HARD.

L:  Are you glad we didn’t stop?

P: Y

L: What made it easier?

P:  A LOT OF TIME TO DO IT

You eventually get over the hump.  At one point, it just clicks- like riding a bicycle or driving a car.  Today my friend Nichole, a professional photographer, did a photo shoot of my daughter Ana for her senior pictures.  Afterwards we chatted for a bit.  She told me it took her a long time to learn to use her flash so that she gets the beautiful pictures she now takes.  She practiced over and over and over until one day it just clicked.  She got it and it became second nature.  She says now she can look up tutorials on the computer for advanced uses of her flash and she picks it up very easily.  As she told me this, I thought, “It’s like RPM!  There is a hump one needs to get over before he or she can flourish as a communicator.”  

So my advice to all the new RPMers out there is this: Don’t give up.  Don’t give in.  You and your child will get over the hump if you persevere.  What’s waiting on the other side will be so worth it!     

 In Corrales, New Mexico

Personality and Patience

I really enjoy the book Ido in Autismland, a collection of essays written by Ido Kedar, a non-verbal autistic boy who wrote about his experience of being autistic between the ages of 12-15.  It was the first book I read that resonated with how I felt my son to be like.  Ido got his start in communication through Soma’s RPM.  I have since bought many copies of the book to give to family and friends so they could understand Philip better.

In August, my in-laws came to visit from Albuquerque, New Mexico.  They both read the book while they were here.  After my father-in-law read Ido’s essay  “Trust, Aura, and Communication” he wondered if Philip also sensed people’s auras.  In the book, Ido talks about how people give off a colored glow which, depending on the color, causes him to be either relaxed or tense.  This, in turn, affects his ability to point and communicate with people with his letterboard.  When he is relaxed, he is better able to communicate.

I decided to ask Philip about this.  I didn’t bring up auras, but instead asked him if different colors could be used to explain certain personalities.  “Y,” he answered.  Together we came up with a list of colors and corresponding personalities and people who might fit that color.  Philip’s responses are in CAPS.

Red: ANGRY

Blue: CALM- MOM, ANA, SOMA, NELSON

Yellow: EASY GOING- CARLOS, LIA, ME (Philip)

Orange: FRIENDLY- GRAMS, TOMMY, KIANNE

Green: ENVIOUS “Who’s green?” I asked.  ANY PERSON.  “You mean any person at some time can be green?”  Y

Purple: ROYAL- LOLA, DAD “Why would you say they are purple?” I asked.  THEY ARE IN CHARGE.

I’ve since noticed the connection between the “blue” personality and Philip’s ability to spell well with them.  One time my older two kids Ana and Carlos were sitting with Philip at our table while I held the board as they talked with Philip. Ana asked, “Why can you only spell with Mom holding the letterboard?” “SHE IS PATIENT,” spelled Philip.  “If I practice with you, would you be able to spell with me too?” Ana asked.  “Y.”  “What about me?” asked Carlos. “N,” answered Philip.  Just so you know, Carlos is not known for being patient.  However, since that conversation in August, I have noticed Carlos becoming more patient and bonded to Philip.  I believe it is because Philip has gotten better in communicating.  It would be interesting to see if Philip still feels the same way.

Though some people are more naturally patient than others, I think everyone can cultivate this quality.  Here is a case in point.  I have two friends, Nichole and Debbie.  To me they are very orange and outspoken.  In fact neither would call themselves calm or patient.  However, they have always paid special attention to Philip and treated him as a regular kid.  When I told them about Philip’s color-personality link, they excitedly wanted to know what color they were.  For each one, Philip spelled “BLUE.” We determined it was because they were patient with him and he felt calm around them.

Today I asked Philip if we could talk about patience.  “Y.”  I read to him some definitions of patience in the dictionary.  Then I asked him how he would define patience.  “STAYING CALM IN A DIFFICULTY,” he replied.  “Why is patience important?” “PATIENCE IS IMPORTANT TO HELP PEOPLE ATTEND TO NEEDED TEACHING.” “What happens if someone is not patient?” I asked.  “I WILL STOP TRYING.”

As I think of my experiences as a parent to all my kids, it strikes me how important being patient is.  Just last week, I remember using an annoyed voice with Carlos to take out the trash.  It didn’t do anyone well.  “I’ll do it at the commercial,” he replied in a sluggish, equally annoyed voice.  A half hour later, I had to remind him again.  This shouldn’t surprise me.  Even I do not want to listen to someone who is impatient with me.

When we realize just how hard it is for our autistic kids to communicate, it should make us want to be more patient.  I like reading Philip the encouraging responses we get from our blog.  Today we got an email from a mom in Maryland thanking Philip for sharing his story and helping her son more than he knows.  Philip had this advice for her son: ADDRESS COMMUNICATION.  IT IS HARD WORK BUT A SO NEEDED GOAL.  

We have to remember, not only do we have to be patient for ourselves, we have to model it so our kids can be patient with themselves.  As difficult as our journey is as a parent, theirs is exponentially greater.   

I leave you with these quotes I like about patience.

Learn the art of patience.  Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure.  Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success. –Brian Adams (author)

Our patience will achieve more than our force.  –Edmund Burke

Love is patient.  Love is kind.  -1 Corinthians 13:4

  Albuquerque, NM