Sunday, March 1, 2015

Touch


Hi Philip, 
First of all, thank you for sharing your thoughts with us. I am new to your blog and I don't know if you have talked about this before, but I would like to know how you feel about physical contact with other people (it can be shaking hands, hugging, kissing or even just touching someone else's body in a crowded place). Does it make you feel uncomfortable or do you like it? 
Thank you. 
Love from Italy,
Ila

Philip writes:

I am letting you know about physical touch. My experience may be different than others. Popular assumptions say people with autism don't ever want to be touched. This is not true. I like some forms of touch like my mom's hugs or my dad's tickles. I like being made to feel liked. My favorite gestures of endearment are hugs, fist bumps, a touch on my head or shoulders, and pressure when I sit behind someone and they lean back.

I mean to be more tolerant of touch when people try to help me. A little anxiety about losing control of my body when I need help from others like when getting my hair cut or going to the doctor make me not like certain touches.  Seeing foreign objects coming at me so over stimulates me. I easily panic.  I am adverse to hand over hand assistance. I don't like feeling like a puppet. But I know I need help managing to do things on my own. People mean to teach me this way. I mean to learn to trust my teachers helping me more.

Touch is important. Living without it would be most depressing.

Philip and his sister Ana- July 2013

Monday, February 23, 2015

My Trip to Dominican Republic

By Philip


I went on a tour of the Dominican countryside. Lots of things were learned. I enjoyed it. We rode a packed tour bus that was open to the air. We rode on many dirt roads.


Mom went horseback riding.


We learned about coffee and chocolate at Maria’s farm. We sampled some. We saw their house. It was tiny and pink. A lot of houses are tiny and colorful. I am awed by people not reacting poorly each day to not being rich. I think people are happier here.




I saw a cigar factory. I saw a sugar plantation. I saw how they squeeze cane juice out. They use a machine now. But a long time ago they used oxen. 







Lastly, we visited a cave. It was interesting. 


I liked acting like the Taino Indians.


The tour guide Sammy was lot of fun. I loved the opportunity to learn about the Dominican Republic. People are loving, appreciative, and fun to be around. I would like to visit again. Peace I think is more prevalent here.


Friday, February 20, 2015

Lego Words

Legos
By Philip

i play with
lots of words
like legos.
i am a collector.
i find words
everywhere.

(dedicated to TS)
-----------

LD writes:
Hello, I am a mother of four children. Two of them have autism. My oldest son M is verbal. My younger son J is non verbal. I have just realized that he can communicate to me via writing on a slanted whiteboard. I have to give him pressure on the back of his hand. He has a device to communicate, but he kept wiping out his program. When I asked why he doesn't like his device, he shared that it is too limited! It's tough to say things with. After communicating to him via writing I could see that the content of his sentences were much more complex than what was on his device. We are planning on going to Syracuse University to have J assessed in March. My other son M was actually writing in cursive when I did this same approach with him. I always believed that both boys were smart, but the things they are communicating are quite something! Could you explain some of this to me?

To LD, 
I am happy you are going to Syracuse.  People there are pulling for you to succeed. I used to have an ordeal having to put my thoughts in pictures.  Pictures are inadequate to me for expressing myself.  Tons more meanings can be formed with letters.  I play with letters in my mind all the time.  They are the building blocks of words.  Words build ideas and stories.  Stories make people's lives.  I am coming to spelling out of desperation to be quiet no more. 
From, 
Philip

Lisa's note: I noticed at an early age that Philip could recognize his letters well and liked to play with flashcards with the words on them as well as alphabet puzzles and foam letters.  Looking back I can see why he has had the ability to self-teach himself to read, but at the time I had no idea.  I always thought he was a thinker in pictures, as people told me it was the way most Autistic people thought.  Philip has since told me he does not think in pictures, but in words.  Throughout the years, Philip has tried PECS, GoTalk, and Alt-Chat.  They all seemed very promising, but he did not use them for more than simple requests or unless he was rotely taught to navigate it in such a way to answer a question.  I believe these programs have a place for some people, but it was not the right fit for Philip, whose inner language skills were way above and beyond what he could express with it.  I have tried to illustrate the deficiencies of purely picture programs with others by handing Philip's device to them and asking them how they would conduct an IEP (education planning meeting) just using pictures programmed on the device.  It's impossible and very frustrating for the user.  My experience has been that methods using open language through spelling offer the most freeing form of communication and self-expression to those whose speech is absent or unreliable (the words spoken are not the words intended).  I have noticed that many times a parent discovers this on their own, as "necessity is the mother of invention."  In India, Soma Mukhopadhyay would not listen to experts telling her her son could not learn.  Her persistence in making sure her son Tito would be educated and be able to communicate, lead her to develop a system which has proven to work with thousands of other nonverbal and limited-verbal people: Rapid Prompting Method (RPM).  Separately, another mother in Japan discovered how to help her son Naoki Higashida to point to letters on an alphabet grid to communicate.  He later wrote an international best seller using the letter grid, called "The Reason I Jump."  Still before these methods, Rosemary Crossley in Australia, worked in an institution where those with the severest disabilities were basically left to die.  She discovered that applying backward resistance to a person's hand (eventually to be faded to elbow and shoulder), could provide stability and sensory feedback to allow a person to intentionally point to objects and letters to communicate.  Her method came to be known as Facilitated Communication (FC).  Although these methods are different in practice, they all make use of letters and words as building blocks to open communication.  They also begin with the presumption that anyone can learn and  contribute, and has the right to be fully respected and included in society.             


Philip, age 3

Thursday, February 19, 2015

Ocean

By Philip

i watch the ocean.
a wonderfully small person am i.
people are small to the
vastness of the boastful sea.

pleading lies beneath my smile.
please don't pull me in too far.
powerful are the ocean tides. 
my strength lead astray in
a momentary panic as a
sudden rushing wave
knocks me to the sand.

i am at peace
when i feel mom watching me.
safe each time a spoken word
reminds me i am 
your son to love.

i mean to enjoy
my creator's ocean.
the awesome vastness.
amount of water infinitely
looking at me.

spanning the ocean
the sky.
talk cannot adequately
praise God's panorama.

listen to the passing wave.
it amounts to a travel
from more than a thousand miles.
each wave cadences to the rhythm
of a longing moon
alone in space.
it's pain drawing
a beautiful peaceful
montage to notice.
meaning is more fostered
in deep exploration.

i appreciate the ocean's
openness.
i am passing time
like a wave.
my life
perfected in longing.


 Philip swimming on our vacation to Dominican Republic Feb. 2015