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.

Lego Words

Legos

By Philip

i play with

lots of words

like legos.

i am a collector.

i find words

everywhere.

(dedicated to TS)

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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

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

Play

Philip has received many encouraging notes and questions since his post in The Mighty.  Thank you for reading and for your warm support.  Here are two questions from readers regarding play:

Dear Philip,

My son is a lot like you--he loves people. He loves them so much and wants to play with friends. I can see that when his sister has friends over to our house, he wants to do what they're doing, but doesn't know how. So, often, he just paces and flaps on the other side of the room. And, worse, sometimes his sister's friends get annoyed by his behavior and they want to get away from him. 

How can I help him play with new friends? 

M

Hi Philip, 

My nephew is 8 and has autism. He is currently using RPM with his Mom and therapists. My question for you is this- in your opinion what is the best way to handle the question I receive from my own children (Ages 8 and 6) about why R can't talk and is not able to play with them the way they would like for him to?


Thank you for your help. I wish you and your family all the best.



Take care,


SB


Orlando, FL

Philip writes:

I am telling you about play. Playing is very hard. I cannot move my body well because it doesn't follow my awesome mind's instructions well.  I can move well.  I can run and make my body make all sorts of mischief.  I am active all the time.  But I can't address my body to follow a new motor plan easily or meaningfully.  I have to practice the motor plan over and over. Playing has too many new plans. I play better with a lot of practice. Lots of times stims get in the way too.

I want to play. I love to play games using my mind. I like trivia games but I need a helper. I like to try sports, perhaps soccer. People should play not expecting me to help them win. I hope to play more someday. I sometimes do play sports at Village Glen (an indoor soccer facility). I play soccer. I love it. Purposed action has to be practiced. I am better dribbling and shooting after many weeks.

You can help by assuming new play situations will stress him out. Try to ease stress by pacing the activity to go quickly and we are already familiar with the rules and motor skills. You can be with him to help. I eagerly play with autistic kids easily because they appreciate stims and are my safe friends to be myself. Teach him play skills by playing some more with him.

You can tell kids that we play more with our questioning minds than with toys. We don't take as much pleasure in acting make-believe games. Sports are a lot of coordinating in my uncooperative body but with opportunities to practice, I can try to participate. Mastering play sometimes seems impossible but I want to not miss out on a lot of fun.