Support

Today Philip chose to talk about autism again. 

Lisa (me): What aspect of autism do you want to talk about today?  More on stims?  Something else?

Philip: SUPPORT

L: What would you like to say about support?

P: IT IS SOMETHING EACH AUTISTIC NEEDS.

L: What kinds of things do you need support for?

P: AT TALKING.  STOPPING STIMS.

L: Why is it important to stop stims?

P: EXTREME ATTACHMENT

L: Is that good or bad?

P: BAD

L: Why?

P: IT KEEPS ME AWAY FROM EVERYBODY

L: Any other ways you need support?

P: EDUCATION

I love reflecting on the things I learn about Philip everyday.  It impresses me how self aware he is.  Philip knows he needs support.  It is not optional.  It is vital.  I now recall something Soma said to me during our visit to Austin.  "We all need support.  There is nothing wrong with it.  I need someone to cut my hair and do different things for me all the time."  It is true.  Do we take time to humbly acknowledge it for ourselves?  We all need support.  I talked about my need for support here. 

Philip listed the three main needs he has for support.

1) Talking.  For Philip to communicate, he needs someone to help him.  This is due to a variety of things.  Poor control over the muscles in his mouth make it hard to speak.  Poor fine motor skills make it hard to write, gesture, or sign.  Problems with initiating action and reflexive automatics also interfere.  Philip needs to be prodded to get things done.  Philip also acts without thinking it through a lot and as a result answers wrongly.  For example, i f I give him 2 verbal choices, he would always pick the last one said.  Somehow Soma was able to find a small window in which real and effective communication can begin.  When someone Philip trusts and is experienced with holds a letterboard in front of him,  he is able point to the letters to spell his thoughts.  I believe with practice, he will eventually be able to write more independently on a keyboard.

2) Stopping Stims.  Philip has told me quite a bit about stims.  He has told me it is his favorite thing to do and it is hard to stop.  It is a "time to relax" from "tons of stress."  For Philip, stress seems to be generated a lot by sounds.  I know new experiences and very busy places can also set him off.  But Philip knows too much stimming is not good because of the isolation it causes.  Many people, including myself in the past, have concluded autistics want to be left alone.  But Philip has communicated many times he likes being with people and enjoys the company of his family and friends.  It is our job to keep him from stimming too much because the power of stims is so great.  It easily overpowers better desires.  I can equate this to an addict and his drug.  In my own life, I can equate this to needing a trusted friend who lovingly keeps me in check so I don't overindulge in complaining, feeling sorry for myself, laziness, or any other thing that is not good in too large doses. 

3) Education.  The service announcement I grew up with as a kid keeps playing in my head.  "A mind is a terrible thing to waste."  I am fascinated with what Philip's mind is capable of.  Finding out how smart he is is like unearthing buried treasure.  You can read about Philip's penchant for math here.  During our talk sessions Philip sometimes spells A-E-I-O-U when he doesn't have a ready response.  I like to say  it's his equivalent of us stuttering or saying "uh..um..I'm thinking."  Usually I might say, "Philip.  That doesn't make sense.  Try again."  This time I asked , "What is A-E-I-O-U?" 

P: VOWELS

L: What are the other letters then?

P: CONSONANTS

L: How did you know that?  Who taught you?

P: SOMA SAID TO ME. (I am amazed he is soaking up everything)

L:How did you learn to read?

P: ALWAYS KNEW HOW TO READ

L: But how did you start?  From school?

P: MY FAVORITE BOOKS

L: Which was your favorite?

P: LOVE YOU FOREVER

We need to support our child's learning by giving him new things to learn, not the same things over and over. We need to speak to them at their age level.  We need to advocate for their education at school and go the extra mile to train and educate their teachers. 

Support, support, support.  Our child needs it.  We need it too.