Friday, February 28, 2014

Einstein, Science, and God

Philip enjoys learning from people’s lives.  This week he said he wanted to study famous scientists.  We have studied Einstein before so this time when I saw a FB post about how Einstein saw the world, I read it to him (you can read Einstein’s own words on his view of science and a divine being here).  Here is Philip’s response.

Einstein is a scientist who believed in an understanding Being.  This Being gives life to creation.  Einstein gives credit to a creator because the laws he uncovers are so perfect.  Each law is orderly.  

I am in awe of God and His creation.  I am in awe of the laws that God made.  Each day God allows us to discover His laws.  I enjoy nature because I like needed time each day to eagerly discover God.  I see God a lot in the way He each day teaches us.  He teaches us by allowing today a pleasure someday to find.  He gives us a hope for each day to get a better understanding of Him.     

Wednesday, February 26, 2014

Speech and Language

I am continuing to teach Philip from Soma’s book.  Today I read some more of chapter 6 which addresses a parent’s question, “Sam began to talk when he was younger, but he lost the language he had.  Why?”  I asked Philip what he learned about the reading and what his experience was.  Like the boy in the example, Philip had more speech when he was younger, but has lost some of it over the years.

(Philip’s responses are in bold)

What is the difference between language and speech?

Language is the ability to use words to represent thoughts.  Speech is the ability to talk.

Can you have language without speech?

Yes.  Each day I am using language without speech.

Why do you think you had more speech when you were younger?

When I was younger I could speak better because each day I readily took to learning.  As I got older I took to stims more.  This happened because as I got older always am I tested the same for years.  Each day I no longer liked learning.  Stims were an escape from repetition.  I took to not caring about my life.  One day I dared myself to understand the world as a typical person.  I was not talking but I was listening always.  I had a strong vocabulary from hearing too much.  Now I can use it when I spell.  I am spelling with new people now.  It is tons of fun to talk to people now.  It is important to learn new things each day.  It makes life interesting.  Someday I hope all autistics will have a way to communicate like me.  I also want to teach people about autism.

Monday, February 24, 2014

Philip's First Day

Today was the big day.  Philip started at the “regular school.”  This has been a dream of Philip’s since he met Michael over the summer.  Michael communicates with a letterboard and keyboard like Philip which allows him to attend regular classes with an aide at the local public middle school.  Back in June, Michael asked Philip if he wanted to learn grade-level material.  He went on to talk about how popular he is at school and how the teachers there are great.  Since then, Philip has repeatedly told me about wanting to “go to regular school,”  “go to (name of school),” and wanting to “get an education like normal kids.”  By mid-year, after failing to get his special school to implement using the letterboard for more age appropriate education, I finally made the push to get Philip’s way.

Today was bathed in prayer, just as Philip’s path to communication has been all along.  Even getting Philip into his new school was at first a challenge as I was initially told there would be no available spots for Philip in the program Michael was in.  Then seemingly out of nowhere, I got the call from the district special ed coordinator that there was now a spot for Philip available starting next month.  The coordinator could tell I was excited and said, “Go have a glass of wine to celebrate.”  I in turn told her, “Thank you for giving me the best birthday present ever!”  Could it be coincidence to get the news on my birthday after all seemed hopeless?  I remember exclaiming, “Thank you God!” after getting off the phone and praising Him in my heart.

This morning, Philip was in a very good mood and spelled I AM EXCITED.  He also spelled DO YOU THINK I WILL DO WELL AT (name of school)?  I answered, “Yes, I know you will.  Everyday you show me how smart you are so I know you are ready.  I believe God has opened the doors to go to this school because He knows you can do it too.  If you ever feel anxious, I want you to remember this verse:  I can do all things through Christ who strengthens me.”  

As Philip left for school on the new bus, I felt more at peace than I thought I would.  I knew no matter what might go wrong, it would be ok overall.  I felt the prayers and encouragement of my friends who periodically called, texted, facebooked, or emailed they were thinking of Philip.

The teacher called me at the end of the day to let me know how it went.  Philip did have a rough spell in the morning, but he impressed and encouraged his teachers the rest of the day by joining in with the class and even spelling a little.  During his speech group when the kids were getting to know each other and stating an animal they like, Philip spelled I LIKE MICE.  “The whole sentence?” I asked.  “Yes,” he said.  Philip also did math using his board with the head teacher.  I told the teacher how excited I was because Philip does not usually spell with someone new and this was better than I had hoped for!  

When Philip got home from school, I told him how proud I was of him for working so hard to accomplish his goal of going to school.  I asked him, “How was school?”  He first spelled IT EACH DAY WILL GET BETTER.  I thought that was an interesting assessment.  Philip already had a good perspective that though today was hard because of its newness, it would get easier to handle.   I asked him to tell me more.  He wrote:

I was excited.  It was scary at first. There were so many looks from kids.  I was nervous and tense.  I had a meltdown.  I am sorry it happened.  After I calmed down I enjoyed school.  I met my classmates.  They are nice.  I spelled with Ms. M (Philip spelled his teachers’ full names).  I love spelling with Ms. M.  She is so nice.  I love needing to spell with all my teachers.  Mr. B is a math teacher.  I liked doing math.  I like (school) because I like real life learning.  I am eager to do best tomorrow.  I am each day proud of myself for trying to meet my goals.  I like (my new school) too much to go back to (my old school).  I love my teachers.  I love my education.  I was going nowhere at (old school) but now I am going forward.

How were the academics?
It was more challenging.

How was controlling your body?
I had a hard time but I did it.

What was your overall feeling?
I am each day stressed but each day I am enlightened.
Is that a good thing?
Y (for yes). 

First day- Feb. 24, 2014

Friday, February 21, 2014

Studying Autism

I have been reading Philip the book Understanding Autism through Rapid Prompting Method (RPM) by Soma Mukhopadhyay who first developed the method to help her own autistic son Tito.  In the prologue Soma writes, “Martin Luther King Jr. once dreamed of a world where his children would ‘not be judged by the color of their skin but by the content of their character.’  My dream is that individuals with autism should also be judged by the content of their character, not by their diagnostic label, nor by the unusual behaviors that often cause them to be segregated from typical society.  Our challenge is to give them the exposure of education and ability to communicate so that their character can be revealed and held up as worthy.” (p. 1)  This book, Soma’s first,  is dedicated to the “why” of RPM.  It explains the neuroscience behind autism and the adaptation process that comes about from an altered development of the brain and sensory system.  It has been quite a learning experience for both me and Philip to go through the book together.  For Philip, understanding his neurology better is helping him to understand why certain things are hard for him and how he can make adjustments to adapt better to situations that are difficult.  In the same way, understanding Philip gives me the tools to adjust my expectations and help Philip better.      

This morning, I asked Philip what he wanted to do today.  Instead of choosing an outing this time, he spelled, “I WANT TO BLOG.  I AM COUNTING ON HEARING MORE OF SOMA’S BOOK.”

In the previous chapters of Soma’s book Philip learned about the stages of cognitive development in normal versus autistic individuals, altered sensory development in autism, and adaptive behaviors in autistic individuals.  Today I read Philip chapter 6 which was in a Q&A format discussing common behaviors in autism and what might be the reason behind them.  I presented the questions from the book and Philip gave me his own insight.  We got through half of the chapter.  This is the discussion which transpired.

(Reading from book) Why is Sam staring only at the corner of the room?

I am blocking out sights from becoming too intense. I look out the side of my eyes to concentrate on detail and not get distracted.

Why couldn’t Sam bring me the book when I asked him to?

I am each day attending to so many things all at once.  I have a hard time focusing on what I am supposed to do.  I am each time trying to heed to my task at hand.  I sometimes get distracted.  

Why does Sam get upset about the window blinds being turned in a different direction?

I like attending to new things.  Each day each new interesting thing is mean to my senses.  I am anxious at first but I want to have fun too.  I am interested in a lively life.  Each day it is good to do more new things.  I am getting better at this.

If Sam has developed alternative means to adjust to the environment, what can be done to make the best use of it?

I think education is so important.  It helps me understand the normal world.  It helps me not think of my own world as much.  My own world is good for nothing.  I stim away my life there.  In Autismland you are alone all the time.  I am glad I am not there anymore.

*This entry is dedicated to Cindi and her teacher Lenae whose blog Cindi's Blog inspired us to also study from Soma's book.  Cindi is 12 and non-verbal and has been wanting to study the differences between autistic and normal minds.  She is seeking input on her blog from ALL people, neurotypical and autistic.  Philip has left his comment.  Please help her out by visiting her research page and commenting. 

 Philip, age 4, at Everglades Elementary TEACCH program in Miami

Thursday, February 20, 2014

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.