Tuesday, April 29, 2014

Meet Me at My Strength

By Philip

Hello World,
I can let you in my weakness if you meet me at my strength.  I am telling you a school understanding.  When I was at (my old school), I did work poorly because I was treated as dumb.  I am intelligent.  Are there meaningful listeners willing to understand autistics?  Mothers are smarter than most eyes of everyone.  Teachers please me by simply seeing me as smart.  Teachers have a lot to teach me.  On a given day, stores of learning can be imparted.  On a given day, more lessons invite me to understand the sometimes confusing world.  My weaknesses are losing control of my body and emotions.  The answer to helping me is to let me use my strength.  My strengths are my mind and intellect.  I can use my mind to understand behavior and live more meaningfully.  I mean to really try hard to go to regular classes.  I think I can handle it.  I like lots of challenging work.  I want to one day invent something.  I would like to invent electronic letterboards.  Someday someone should do it.  Someday I would like to learn mechanical engineering.  It is math for understanding real kinds of machines.  I love learning.  It makes me giddy with happiness.   

 Philip outside of Baltimore Museum of Art

Friday, April 25, 2014

Sensory Diet

Anyone who has ever met Philip for even a brief moment knows he is one energetic kid.  Some of the things people have said about him regarding his energy are: “He’s got ants in his pants,” “I wish I could harness that energy.  It could power my home,” “He just keeps going and going.  He’s the Energizer Bunny,” and my own expression, “Philip, you are full of lightning bolts.”  When Philip transitioned to public school, I quickly realized that the academics was going to be the easy part.  The hard part was going to be sensory issues, impulse control, and keeping it together to avoid meltdowns for a variety of reasons.  Philip’s teachers have been remarkable for working on all the components Philip needs to succeed in school and life.  Not only have they been teaching Philip age appropriate academics and allowing him to communicate with his letterboard, they have also been working hard to learn Philip’s sensory needs to help him stay focused and calm.  They have incorporated “sensory breaks” like exercising with weights and allowing Philip to listen to music on his headphones.  Two days ago, Philip’s teacher wrote a note asking me what sensory materials Philip would seek out so he could incorporate them and fine tune his sensory diet.

“Sensory diet” is a term that was first coined by an occupational therapist named Patricia Wilbarger.  It is an individualized schedule of sensory activities to help a person optimize their nervous system to concentrate and function properly throughout the day.  Depending on a person’s needs, activities can serve to arouse or calm the nervous system.  In Philip’s case, lots of calming activities serve him best.  I will be honest; in the past I did not put much stock in the sensory integration component of autism.  I am only recently investigating it and seeing its very real importance.

One of the great things about Philip being able to communicate is that I no longer have to guess about Philip’s needs.  I can simply ask him.  So I asked him what he felt his body needed to stay regulated so he could function best at school.  Our conversation went as follows:

Lisa: What is body regulation?
Philip:  It means my body is in tune with my mind.

L:  When is your body most regulated?
P:  When I am solidly placed in my surroundings.  It helps to meet my senses leading me like smell and touch and mouthing things.

L:  Do you need a sensory diet?
P:  I need a sensory diet badly.

L:  What things will help?
P:  Doing exercises.  I understand weights set me at ease.  Need muscle power to achieve more noticeable body awareness.  Weight bearing like lifting and pulling.
Quiet time relaxes me.
Meeting water.
L:  Like swimming?
P: Yes.

P: Smelling will be helpful for learning.  Some candles can be useful.  (my note- Philip often likes smelling people’s perfume or deodorant and the candle in our bathroom). 
L:  What scents?
P:  A beach candle (the scent of our bathroom candle) or a pear candle.
L:  How do smells help?
P:  Smells are useful for mental health.  Some smells are healing from treason of body.
L:  What is treason of body?
P:  When my body is out of control from mean sensations.

After having this conversation with Philip, I decided to help his teachers out by buying some of these things to help make up Philip’s sensory diet.  The teachers already had weights, so I bought a resistance band to incorporate pulling exercises.  I also went to Yankee Candle to buy some tea lights with relaxing beach scents and fruit scents.  I packed his backpack with these and a copy of our conversation so the teachers would know Philip’s sensory needs in his own words.  

Philip also wrote yesterday morning.  “I need to engage my senses to learn about my placement in my surroundings.  I need a sensory diet to get my bearings.  Each day my body makes improvements in finding itself.  I love my senses.  They help me a lot.  I am eager to verily make improvements at school with my sensory diet.”  

After writing, Philip did some bouncing on his yoga ball, 10 sit-ups, and 10 weight lifts before getting on the bus to go to school.  

When Philip returned from school, I received one of the best notes from his teacher ever!  His teacher thanked me for sending the materials and said Philip benefited tremendously.  He had done a great job in all his work and got the rare “GREAT” day circled (1 of only 2 times I can remember from a 4 point scale from 1 being poor to 4 being great).  It was exciting to see how well Philip did and to discover yet another way to help him.     
 April 2014

Sunday, April 20, 2014

Philip's Testimony

I am Philip.  I came to love Jesus when I was three.  Each day I understood I was a sinner.  I was about to become a tied up person each day.  I was autistic.  One day I aimed to talk but needed help to get the words out.  My tongue was tied.  I always knew everything but I couldn’t tell anyone.  I love it that Jesus was always listening to my prayers.  I am today a follower of Jesus.  He rescued me from sin and silence.

I heard about Jesus a lot from Mom and church.  I was saved when I saw an angel.  I was dancing to the music in my head.  I saw someone pure white.  I toppled down.  The angel told me another time I will talk.  I understood I would be silent kept.  My mission was to bring the Good News to autistics.  I was to wait for the time of the Lord.

When I was nine, I saw Soma to learn how to communicate.  I was really surprised anyone could believe in me.  I was terrified at first.  Soma tried to make me do hard things.  No one ever trusted me to do anything.  Soma asked me to do understanding to solve problems.  I was nervous to try.  Eventually I tried and I too was relieved from silence.  I am today talking to the world.  I tell the good news of autism each day.  I am telling the freedom of communication.  I am telling the Good News of Easter.    

 Happy Easter!

Saturday, April 19, 2014

College Trip

My wish is to follow Ana, not only this week, but to pursue college too someday.  I liked going to help Ana look at schools.  First we went to Chicago to look at Northwestern.  Chicago was cold and it snowed.  I kind of accepted it was like my home in Buffalo.  I mind it some.  Ideally it should be warmer.  Northwestern was teaching engineering in a whole completed way.  They totally get it that one should solve real life problems.  I liked that students were working on a brace for helping someone after having a stroke.  I also liked that someone talked to me about my letterboard.  He was so nice.  He was a student named Alex.  He said he could help make my letterboard electronic.  I was so meaning to tell him how happy I was for him talking to me.  I really liked Northwestern.  I understand I will not be able to be an engineer but I have tons of ideas they can work on.  I want them to give autistics voices.  I understand it will be difficult but kids will be much better off.  I hope he can get it done.  I enjoyed Chicago.  I enjoyed walking to the pizza restaurant.  The food was great.  I liked to wear my warm clothes.  It was so cold.   
My time in Baltimore was fun too.  I loved the needed break from the always cold weather.  I liked playing outside to understand the ripeness of spring token to Baltimore.  I played among the pretty trees flowering white blossoms.  I danced along paths of red and grey stones.  I laughed in the sun.  I am happy outside a lot.  I enjoyed learning about Johns Hopkins.  It was a pretty school.  I would not hear about the program because my Dad took me out.  I was being too loud.  Johns Hopkins was mostly tons of students who have no regard for me except one who understood kids like me.  He was the tour kid (guide).  He smiled at me.  The kindly way to make my day is to be understanding and smile kindly.  I had a lovely vacation.    

*Lisa's note:  We had a good week looking at schools for my daughter Ana and exploring Chicago and Baltimore.  Philip really impressed me, especially at Northwestern.  He sat for presentations for about 6 hours and was taking it all in.  At lunch he even talked to Alex, an engineering student, using his letterboard and we presented the idea of making his letterboard into a lightweight keyboard for an ipad that could give voice output.  We are keeping in touch with him and the coordinator of the student design teams to see if they can help us make it a reality.

At Johns Hopkins

Wednesday, April 9, 2014

Lessons from National Geographic

Since starting RPM a year and a half ago, my way of teaching Philip has evolved and expanded.  In the beginning, I didn’t really know where to start.  Philip would have been in the fourth grade, but at his school, they did not have grade levels and he was still trying to identify coins and match digits 1-5 with the corresponding number of blocks.  I did not know what he knew.  I started by using my second grade daughter’s take-home papers from school.  I taught Philip about habitats and communities and had him complete fill-in-the-blank vocabulary sheets.  From my friend Susan, I learned about some good curriculum guides which I started one year below grade level and quickly got him caught up to grade level.  I used What Your Third Grader Needs to Know by E.D. Hirsch, Steck-Vaughn Focus on Science, and McGraw Hill U.S. History.  For the longest time I could not get Philip to answer simple math questions like “what comes after 21?” or “how do we write 16?”  Susan gave me a tip she learned from her son Michael who is 4 years older than Philip and also learned from Soma.  He told his mom, “Start at a high level and then bring it down if necessary.”  When I expressed my frustration with Philip’s inability to do math, she suggested I put a handful of coins on the table and ask him to show me the value.  I thought there was no way he would be able to.  That night I tried it and lo and behold, we had our math breakthrough as he pointed on the letterboard the correct amount to the penny.

As Philip moved beyond just answering academic questions to being able to answer open ended questions and give his opinions, I started trying to pick topics that were more relevant to what was going on in the moment like the Olympics or the Oscars.  Oftentimes when there was a day off from school, it would be a holiday like Columbus Day or Martin Luther King Jr. Day.  It gave me a reason to teach him about these historical figures and their significance.  I learned about the iPad app called Brain Pop from another blog of a parent called Emma’s Hope Book.  I began expanding on lessons with Brain Pop to fill in the gaps about interesting subjects related to what we were studying.  For example, Philip and I got into reading all sorts of biographies.  After reading a biography on Jonas Salk who developed the polio vaccine, we did Brain Pop lessons on vaccines and the immune system.  I was learning right alongside him.  It was fun! 

Another source of teaching has been through our church’s Stockade program.  Similar to Boy Scouts, Philip earns badges for achievements.  I help Philip do his achievements which range from learning how to take care of the environment, Biblical studies, going to Dad’s workplace, and knowing our rights and responsibilities as citizens.  Philip is so proud each time he gets a badge or a treat from the prizebox.    
Recently we have been making good use of the National Geographic subscription we got for Christmas from Philip’s grandparents.  Before Philip gets home from school, I preselect a few interesting pictures from the magazine that Philip will have the opportunity to write about, whether a story, poem, or essay.  After choosing the picture, I read him excerpts of the article related to the picture and do an academic lesson.  At the end he writes his piece about the photograph.  Today Philip chose this photo of flood zone squatters in Manila:

The corresponding article was entitled “Rising Seas.”  We talked about global warming and its causes, how sea levels rise, and the possible consequences.   We particularly looked at Miami, where we used to live, and how the rising sea levels has been posing a threat to Florida’s freshwater supply.  After Philip answered some questions on the reading, he wrote this poem based on the picture.

I Know a Plan

My family is poor.

I plan to venture to the States of America.

We live in slums overlooking the sea.

The sea releases each sort of debris.

It stinks.

Son to mean world

I rinse myself to wash away the torment of each day.

I wash away my past

like the rising tide swallowing our land.

I kiss this life goodbye.

I know a plan.

Dream to make haste to a kind, gentle world.

I leave now.

I won’t look back.