Autism Revolution

I believe the tide is turning in the way we view autism and handle its challenges.  Autistic self-advocates have been leading the way for some time in promoting understanding and acceptance.  Their efforts are slowly but surely starting to catch on with parents and some professionals who have embraced notions of neurodiversity and the presumption of competence.  These parents and professionals have found a new path that is exceedingly more rewarding than the old path merely treating autism as disease and developmental delay.  They have chosen for their children alternative methods of education and communication that respect and work with their child’s unique autistic neurology.

Today Philip typed this to me:  I want to partner with my autistic friends to write a blog about autism.  It should be many voices. 

What a delight this brought my heart!  Philip can speak through his fingers.  He has friends.  He wants to work together with them.  Together with them, he wants to write about autism and teach the world what it is really like!  Haha- isn't this the real Autism Speaks!  Only a few short years ago, I did not think this could be possible!  At the time I had never met a nonverbal child who could communicate beyond simple requests.  Never in my wildest dreams could I have imagined what I know today.  Today I know the truth.  There are hundreds, perhaps thousands of people who were once thought to be severely cognitively impaired and voiceless, who can actually learn, think deeply, and now express themselves on paper, stencils, letterboards, keyboards, tablets, and computers.  The number of people is growing everyday, but many more still need to be reached.  They need dedicated parents, teachers, and supporters to teach them at their true level of understanding and help accommodate their communication as needed.  This communication is not a cure for autism, but the ability to be heard, understood, and affect one's own destiny brings serenity and alleviates some frustration.  Learning to communicate is a process that takes time and requires hard work and perseverance on the part of both the child and support network.  It can be very trying at times!  Thankfully there is an online community of families and allies who support, encourage, help, and celebrate one another in their journeys of unlocking their children’s voices.  There is good camaraderie among members and dialogue is overwhelmingly hopeful and positive.  It is a marvelous thing and nothing short of revolutionary.  

This month this blog will feature the writings of many of these Autistic children and adults who communicate through spelled or typed words.  Many have learned through well replicated techniques such as Rapid Prompting Method (RPM), Facilitated Communication (FC), or various other Augmentative and Alternative Communications systems (AAC).  A few parents even discovered their own particular technique through intuition and ingenuity.  The method does not matter as long as it works.  What matters most is empowering each person and their families through real and effective communication. This month, Autism Acceptance/ Awareness Month, we band together as a community of Autistic people, families, professionals, and allies to express ourselves in a beautiful array of voices, each with its own unique personality and experience.  The goal of this month is not simply awareness so we can tolerate one another.  The goal is acceptance, so that by each person’s inclusion and appreciation, our world is enhanced and each of our lives enriched by the diversity of thoughts and experiences working together.

MY LIFE AS A GIRL WITH AUTISM

I HAVE A VOICE AS LOUD AS A LION’S ROAR.  

IT IS DEEP DOWN IN ME LIKE A BIRD AFRAID TO LEAVE ITS NEST FOR THE FIRST TIME.  

NEITHER TIME OR LUCK WILL WAKE THIS SLEEPING DRAGON, 

BUT MY KNIGHT IN SHINING ARMOR HAS ARRIVED TO RESCUE THIS PRINCESS IN DISTRESS.  

RPM HAS AWAKENED MY VOICE LIKE SLEEPING BEAUTY WAKING FROM HER SLUMBER.  ALL MY WORDS LEAVE MY BRAIN LIKE A WATERFALL FLOWING INTO MY FINGER ONTO THE THICK BLACK STENCIL BOARDS.  

SUDDENLY MY HEART FEELS LIKE A LITTLE KID ON CHRISTMAS.  

MY VOICE IS AS IMPORTANT AS A MEANINGFUL POP SONG THE WORLD FALLS IN LOVE WITH.

THIS IS ME AND THESE ARE MY WORDS LOUDER AND MORE FEROCIOUS THAN EVER.

BY

TIFFANY JOY BROSKOSKIE

Age 13

Kenilworth, NJ

(RPM for 1 year)

Mom Debbie and Tiffany

Ask Philip

For those of you who don't already know, Philip has a Facebook page in which he writes shorter "status updates" than the ones here on the blog.  You can reach his page at https://www.facebook.com/faithhopeloveautism.

Over the weekend he wrote this update: I pour my heart out in my blog. I put lots of thought into what I write. Please write me about your questions. I would like to answer them. 

So we invite you to ask Philip your questions here or his Facebook page by leaving a comment.  He may not be able to get to them right away, but he wants to try his best to help others understand autism and what it is like to live as he does.

Philip answered 2 questions over the weekend.  

SC writes: Philip, my son 8 year old son Ryan and i have been doing RPM for over a year now. He is doing very well, but he does not seem to enjoy lessons with me as much as I would hope. Lately, I have been having to pick him up to bring him to the table for our lessons. He still does well with the lessons and spelling, but he always points to the timer or tries to escape. Do you have any suggestions on how to encourage him to want to do the lessons with me?

to ms. c, a lot of times my mom has to push me too. i can be not wanting to do work, caring instead to stim. but i am happy she pushes or i would not be where i am today. can you make a lesson on something keanly related to his interests or people who are inspiring? people who inspire me are malala, scientists, presidents, and autistics like ido and naoki. i hope i am able to help. from, philip

LC writes: Love your blog, Philip, and I read it religiously. Thank you for inviting questions...i know you put all your heart into your blog, and I know how much work it takes to type/point each letter of the alphabet, so I always hesitate to ask questions of my autistic heroes (Yourself included). But here is one: what sorts of things might help integrate your senses to facilitate learning? For example, Sydney Edmond uses Irlen lenses, several students have a preference for one color letter board over another color, one friend of mine can be calmed by the smell of lavender essential oil. Am I making a mistaken assumption here that colors and scents help integrate senses? Or are they merely a way to calm an overwhelmed sensory system?

to ms. c, i am answering from my own experience. my senses work without stopping. i do not need integration of my senses. my hearing is too much. i listen well and can locate voices even when mixed. i get a little overwhelmed. i can hear in the next room. i hear noise always. it makes me move to block out noise. the people whom i learn from best let me stim. kind easing talking puts me at peace. i think i have normal sight but i each day get attracted to certain objects and get distracted. for example each day when i see a straw i have to pick it up and twirl it. i mean to make each distraction less. some nice sensations like music, exercise, and water help calm me. i like to smell nice soap. i like a time to teach you about me. from, philip

When asked about whether different colored letter boards helped, Philip replied on his letter board: SOMETIMES I WOULD LIKE TO USE A BLUE LETTERBOARD BECAUSE IT IS MY FAVORITE COLOR. (Btw, he does not have a blue one, but maybe he will get one for his birthday. -Lisa)

Getting ready to go sledding in Angel Fire, New Mexico

Communication is Power

This was originally written in March 2014 and published on September 3, 2014 in The Golden Hat Foundation Blog at http://goldenhatfoundation.org/about-us/blog/167-communication-is-power

By Philip Reyes

Hi, my name is Philip. I am eleven years old. I live in Buffalo, NY and attend public school. I am autistic and proud. Autism is a different way of noticing the world. I listen perfectly and my senses address my understanding of things. I am smarter than I look. One day I hope to use my intelligence to contribute to society.

Communication is vitally important to all people. Before I could communicate I was trapped in my autistic sounding board. I could not reach out with my thoughts. I only had myself to talk to. I was made to perform like a trained animal. I was treated as such. I stopped respecting myself, stopped opening up to others. I was without hope someone would know me. I retreated into my own world. To stim gave me pleasure not available to me otherwise.

When I was nine, my parents took me to see Soma. I was surprised she talked to me regularly. She challenged me to picture my life differently. She was the tower of strength I needed. I put my life on the line. I would understand the stakes of communicating so I could be known by my loving family and others. Learning to express myself was peace to my soul. I poured my energy to Soma to please her because I liked her so much for believing in me.



Today I am blogging about the power of my communication. I am no longer sad about being autistic. I am happy being able to express my opinions and views as an autistic. I am spreading hope to other autistics that they can live meaningful lives. I am always learning and improving my skills. I have hopes for becoming a writer and advocate for autistics. Now I can tell my story.

Biography
Philip is a 5^th grader at Heim Middle School in Getzville, NY where he is supported by his teachers to use a letterboard and iPad to participate in regular academics. He has 3 siblings: Ana, Carlos, and Lia. Philip is non-verbal and at age 9, first learned to communicate with a letterboard stencil from Soma Mukhopadhyay at her HALO clinic in Austin, TX. He is refining his skills to include typing on an iPad and even some speech. Philip’s interests and hobbies include swimming, soccer, reading biographies, studying the neuroscience of autism, and expressing his views on his blog at www.faithhopeloveautism.blogspot.com

The Body and Brain Disconnect by Elizabeth Vosseller

When I began blogging about Philip's progress with communication about a year ago, my purpose was to document Philip's words, which were more precious than gold to me, and to remember the lessons I was personally learning through Philip's awakening to communication to the outside world.  Particularly, I was learning so much about the trio gifts most highly esteemed in the Bible, and I would say in most people's lives- that of faith, hope, and (the greatest of all) love.

At that time, I never would have envisioned the impact we would make in telling our story.  It has been an amazing year.  Not only have Philip and I grown in maturity and skill, we have had the wonderful privilege of helping others.  These have included parents, grandparents, teachers, professionals in speech and occupational therapy, and most importantly, other kids like Philip.

Today I am reblogging a post from my friend Elizabeth Vosseller, a speech and language pathologist in Virginia.  We correspond on Facebook and email.  She has been doing great work with her students using RPM and her blog is an amazing resource of lesson plans and testimonies from her many students who are thriving in communicating despite not having speech.  Her blog and original post (reposted with her permission of course) can be found at http://growingkidstherapy.wordpress.com/2014/08/12/the-body-and-brain-disconnect/#comments.  Elizabeth- Thanks for your friendship, generosity, encouragement, and heart of gold!
-Lisa

The Body and Brain Disconnect

Posted on August 12, 2014 by growingkidstherapy

 

I am part of a wonderful community of parents and practitioners of RPM. We chat, compare notes, commiserate, laugh, motivate, and learn from each other. Most of us have never met face to face (yet!). We have come together via the internet to blog, Facebook (is this now a verb?), skype, and email not only to learn but to share the words of individuals using RPM and encourage others to try this empowering method of education and communication. One of my favorite blogging duos is Lisa Reyes and her son, Philip, who write Faith, Hope and Love…With Autism. It has been a pleasure to get to know Lisa through her blog and our correspondence. Lisa is a great example of a parent who has worked patiently and persistently to support her son’s journey in RPM while guiding other parents! I could fill pages with the names, stories and leadership of other remarkable parents (and I will!). That’s the beauty of this community – parents and providers are just as dedicated to the success of others as they are to the success of their own children or clients.

Several months ago, I read Philip and Lisa’s blog entry, “The Difficulty of Self-Control“. Philip described his struggles with control of his body and the disconnect between his body and brain so eloquently. Through his words, I gleaned a better understanding of my kids who have similar struggles. So, I wrote a lesson featuring Philip’s blog! This has been one of my favorite lessons and as you will see, I have used it many times with clients of varying ages. (These responses are from clients ages 8-23. I do find it is best used with individuals who are consistently responding at the sentence level, but I have used it with kids who are at the multi word level too.) *To access this entire lesson (and please try it out with your own child!) see the comments section of this post. Here are the responses from my panel of experts!

“MY BODY HAS A MIND OF ITS OWN WHICH IS VERY DIFFERENT THAN MY OWN. “

Can you relate to Philip’s statement that his body does not obey his brain?

I GET OVERWHELMED WITH TRYING TO CONTROL MY BODY.  I HAVE TO WORK SO HARD TO GET THROUGH MY DAY.  I AM JUST TRYING TO LIMIT MY MOVEMENTS SO I CAN FUNCTION AT ALL.  ~Luke (8)

I CAN SO RELATE TO PHILIP.  I CANNOT CONTROL MY MOVEMENTS BECAUSE MY BODY FUNCTIONS SEPARATELY FROM MY BRAIN.  TOTALLY SEPARATE.  MY BODY TAKES OVER AND I AM LEFT OUT OF THE DECISIONS.  IT IS NOT PRETTY TO BE LIKE THIS.  I DO NOT LIKE THE THINGS THAT MY BODY MAKES ME DO. Can you give me an example?  GOING CRAZY WITH NOISES AND MOVEMENTS.   ~Paul (23)

MY BODY DOES NOT OBEY MY BRAIN EITHER.  I DON’T KNOW WHY MY BODY WON’T LISTEN TO MY BRAIN.  YOU CAN NEVER KNOW HOW FRUSTRATING IT IS TO LACK CONTROL OF YOUR BODY.  ~Huan (17)

YES.  MY BODY AND BRAIN ARE DISCONNECTED.  JUST LIKE PICKING MY FINGERS. THESE URGES COME OVER ME AND I HAVE TO DO IT.  ~Ian (16)

I DO NOT HAVE CONTROL OF MY BODY.  IT DOES NOT LISTEN TO ME.  MY BODY DOES WHAT IT WANTS.  ONLY MY BODY KNOWS WHAT IT IS GOING TO DO.  Can you give me and example?  SOMETIMES IT IS NAUGHTY WHEN I TELL IT NOT TO BE. OTHER TIMES I AM SURPRISED BY WHAT IT DOES.  ~Emma (17)

SO VERY MUCH.  I CANNOT CONTROL MY BODY.  MY BRAIN AND BODY ARE DISCONNECTED.  SO I USE MY BRAIN TO THINK.  VERY OFTEN MY BODY BETRAYS ME.  IT WONT LISTEN TO MY BRAIN.  MY BODY HAS A MIND OF ITS OWN WHICH IS VERY DIFFERENT THAN MY OWN.  ~Ben (18)

Philip talks about his impulses.  What is your experience with impulses? 

I CANNOT STOP MYSELF WHEN I START TO DO SOMETHING.  I FEEL BAD AFTER BUT I CAN’T HELP IT. ~Luke

I HAVE IMPULSES ALL THE TIME.  MY BODY IS ALWAYS GETTING ME IN TROUBLE.  IT IS UNCONTROLLABLE AND I HAVE SPENT MY ENTIRE LIFE FIGHTING FOR CONTROL. IT HAS BEEN A CONSTANT BATTLE.  ~Paul

MY BODY TAKES OVER MY BRAIN AND I AM LEFT OUT IN THE COLD. WHEN THIS HAPPENS  I AM TOTALLY SURPRISED.  IT IS LIKE A STRANGER HAS TAKEN OVER MY BODY.  ~Huan

I AM ALWAYS MEETING CHALLENGES FROM IMPULSES.  MY BODY IS OUT OF CONTROL. OFTEN MY BODY REVOLTS AND TAKES OVER AND KICKS MY BRAIN OUT. FIRST I NOTICE SOMETHING.  MY BRAIN REGISTERS SOMETHING AND I KNOW WHAT TO DO BUT MY BODY DOES NOT LISTEN TO MY BRAIN.  I CAN NOT EVEN TELL YOU HOW FRUSTRATING IT IS.  MY BODY NEEDS TO GO IN TIME OUT.  SOMETIMES I GET SO ANGRY WITH MY BODY.  OTHER TIMES I THINK I AM REALLY MAKING PROGRESS. ~Ian

IMPULSES HAPPEN ALL THE TIME.  I SEE SOMETHING AND I CANNOT HELP HOW MY BODY RESPONDS TO IT.  Can you give me an example?  WHEN I SEE THE COMPUTER I GET OBSESSED WITH THE NEED TO GO ON IT.  ~Emma

USUALLY IMPULSES FOR ME HAVE TO WITH MY NEED TO STRAIGHTEN UP ALL THINGS OUT OF PLACE.  I TRY NOT TO BUT MY BODY TAKES OVER.  USUALLY I LOSE THAT BATTLE SO I HAVE QUIT THAT WRESTLING MATCH.  ~Ben

Philip talks about being tired.  What makes you tired?  

I AM TIRED OF FIGHTING MY BODY ALL OF THE TIME.  IT IS A NEVER ENDING JOB FOR ME. I AM SO WIPED OUT PUTTING UP WITH MYSELF AND MY CRAZY BODY.  I WISH I COULD STOP FIGHTING ~Luke

I AM TIRED OF CONSTANT STRUGGLE WITH MY BODY.  I DON’T WANT TO CONTINUALLY STRUGGLE WITH MY BODY.  I DON’T WANT TO CONTINUALLY HAVE TO WORK HARD JUST TO GET THROUGH THE DAY.  BUT I HAVE NO OTHER CHOICE. I ACCEPTED THIS LONG AGO.  ~Paul

JUST GETTING THROUGH MY DAY IS EXHAUSTING.  TRYING TO CONTROL MY ACTIONS EACH TIME MY BODY TAKES OVER WIPES ME OUT.  THIS HAPPENS ALL DAY LONG.  I NEED A VACATION FROM MY BODY.  YOU LAUGH, BUT IT IS TRUE. ~Huan

TRYING TO EDIT MY BODY’S ACTIONS NEVER STOPS.  IT SUCKS THE LIFE OUT.  THE BODY IS THE ENEMY.  I WISH FOR REST PARTICULARLY AT NIGHT WHEN I WANT TO SLEEP.  THE CONTRARY BODY WONT LET ME.  ~Ian

I AM TIRED OF MY BODY BEING NAUGHTY.  IT NEEDS TO LEARN TO LISTEN TO MY BRAIN AND BEHAVE LIKE A TEENAGER.  I AM SO TIRED OF MY BODY GETTING ME IN TROUBLE.  ~Emma

I AM TIRED OF FIGHTING THIS DISOBEDIENT BODY.  EACH DAY IS AN EPIC BATTLE BETWEEN MY BRAIN AND BODY.  I AM EXHAUSTED BUT REFUSE TO SURRENDER THE WAR. ~Ben

Philip mentions trying to control stims, what can you tell me about stims?  (Note: my lessons have a way of evolving over time.  I have added these last two questions over the months that I have used this lesson.)

STIMS HELP ME TO FOCUS. DO NOT THINK THAT WHEN I AM STIMMING THAT I HAVE STOPPED LISTENING. I AM STILL WITH YOU BUT MY BODY HAS CHECKED OUT. ~Luke

STIMS ARE A REST FROM MYSELF.  THEY LIGHTEN UP MY BURDENS BY LETTING ME ESCAPE.  STIMS ARE LIKE NOTHING I CAN DESCRIBE.  I BET IT IS LIKE BEING ON DRUGS.  STOPPING MY STIMS IS VERY DIFFICULT FOR ME.  I KNOW I CAN’T STIM ALL THE TIME BECAUSE I WOULD NOT GET ANYTHING HARDLY THOUGHTS OUT.  THE BAD THING ABOUT STIMS IS THAT THEY KEEP ME FROM BEING ABLE TO THINK.  ~Ian

Is there anything that we can do to help? What gives you hope?  

I NEED TO BE BROUGHT BACK FROM THE HOSTILE TAKE OVER OF MY BODY.  IT HELPS TO TALK TO ME SO MY BRAIN IS INVOLVED. THAT WAY MY BODY HAS TO TAKE A BREAK. ~Luke

I AM STILL HOPEFUL.  EACH DAY I GET TO HAVE A CHANCE TO LIVE MY LIFE TO THE FULLEST.  I AM GRATEFUL. ~Paul

I NEED HELP PATROLLING FOR UNSAFE TERRITORY, PLACES THAT MIGHT TRIGGER A MELT DOWN.  STOP YOURSELF AND THINK ABOUT WHAT MIGHT SET YOU OFF. THINK ABOUT THAT HAPPENING TO ME DAILY, SEVERAL TIMES A DAY.  NOW YOU CAN UNDERSTAND WHAT IT IS LIKE TO BE ME. ~Ian

I am so grateful to be a part of this incredible RPM community. My thanks to Lisa and Philip for their leadership and kicking off this discussion on the brain and body! Another huge thank you to my clients and their families who teach us something new every day! ~Elizabeth

Letter to Autism Daddy

This is written by Philip to Autism Daddy in response to his blogpost, My Son with Severe Autism is Happy.  Isn't that the Most Important Thing?, a 2012 post reposted on the Autism Daddy Facebook Page today.  I have followed Autism Daddy's blog for a few years now because our sons are both the same age and are non-speaking.

To Autism Daddy,

Today my mom read your blog post to me.  You are a good dad to write about your son.  I understand you are frustrated by your son's lack of speech and progress.  Rightly so.  I am telling you tips to make his life better.  Dare to try RPM.  RPM took my mind each day and taught it to think over my stims.  I was trailing behind in my own world.  I am so happy I can day to day improve in talking now.  I cannot use my voice well.  Cannot meet normal expectations.  I feel insecure in my actions.  But I am intelligent and now I can show everyone my thoughts.  Before I could communicate, I was so frustrated with life.  I placed myself in world of my own.  I made my own rules, not caring that people would be pissed off.  I understood everything but couldn't do anything about it.  I liked to kid around with my teachers and act stupid bc (because) they treated me like an infant.  I am telling you your son is a lot smarter than you think.  I understand him bc I am intelligent and non-verbal too.  Not talking does not mean not thinking.  Would you like to be kept silent?  This is not peaceful.  This is killer pain.  I urge you to get understanding of RPM and give your son a voice.

From, 

Philip

(Autism Daddy, please check out my resource page and RPM Provider page.  I believe there is one in your area.  Philip and I would love to see you get help for Kyle to learn and communicate.  We know he can do it!)

Visiting sister's college 7/14.  I like the sign.

Video of the first couple sentences of the letter.  We started slow because Philip is beginning typing.  At the 3:30 mark we switch to pure letterboard which goes much faster.  (Video taken by 9 year old sister)

Birthdays

Today is Philip’s 11^th birthday.  His due date was March 14, the same birth date as his older sister Ana.  But Philip took his time and was born 3 days later on St. Patrick’s Day.  I remember my Auntie, who is now in heaven, imploring us to name him Patrick, but we stuck to our original name picked out: Philip Mark.  Philip is named after Philip the evangelist and Mark the Gospel writer in the Bible.  The story of Philip is found in the book of Acts chapter 8, verses 26-40.  Philip was lead by the Holy Spirit to an Ethiopian official in his chariot studying the book of Isaiah of which he did not understand.  Philip explained the prophecy about Jesus and told him the good news of the Gospel.  The Ethiopian received the Good News with rejoicing and was baptized by Philip.  Philip went on to preach the Gospel throughout the nearby towns.  I always liked that story and envisioned Philip a good namesake for a boy I’d hope would bring the Good News to others someday. 

For most kids, birthdays are a joyous time of celebration with friends and family.  There is anticipation about the new year and what milestones lie ahead as the child grows and becomes more independent.  During the period of time between Philip’s diagnosis of autism and before the advent of his communication, each birthday of Philip’s was a bittersweet occasion.  We would celebrate with family and friends and even have children’s parties at My Gym or in the back yard with a bounce house when we lived in Miami.  We took pictures of our happy family and Philip opening presents and eating cake. But after all the guests went home, I would mourn another year lost.  In my mind, Philip’s window of recovery was shrinking with every passing year.  Every year he fell further and further behind his peers.  Every year he would be less tolerable in public as he grew in size but remained at a static developmental level (so I thought).  And then there was always the thought lurking in the recesses of my mind: what will happen to Philip when he grows to be an adult?  Where will he go when we are too old to take care of him?  It was a thought I mostly tried to shut out because it was too scary and painful to think about.  As Philip grew older, the less I thought his name fit him.  How could he be a herald of good news without a voice?

That all changed October 23-26, 2013 when we took our first leap of faith into trying RPM for the first time.  In Soma’s HALO Clinic in Austin, TX, we got our first glimpse into Philip’s potential as he learned to listen to Soma’s grade level lessons and demonstrate his comprehension by choosing from written choices and then spelling.  He even answered some open ended questions.  Many of these stories have been written about in previous blog entries such as here, here, and here.  Philip’s voice did not develop overnight and it did not develop in the way I envisioned.  There was no magic pill and Philip’s transformation was not overnight.  He did not become less autistic in appearance, yet his maladaptive behaviors did improve.  He is in every way autistic and wonderful.  Yesterday I reviewed the videos I had taken 7 months into RPM, then 1 year, then a year and a half.  How encouraging it was to see the gradual progress!  And through all those years I had waited for spoken words, I never had envisioned the joy I would feel in seeing his words emerge letter by letter on a letterboard.  They are more precious than gold to me.  It was the reason I started to blog so I would never forget them.  Of course I still would love to hear Philip speak with his physical voice and hopefully one day he will, but I am beyond grateful to finally know what Philip thinks and I will take his words however I get them!

Even though today is Philip’s birthday, we celebrated yesterday.  It was the first time Philip gave input to what he wanted for his birthday.  We gave Philip a choice between a party with close family at a restaurant or a kids’ party at a playplace.  He chose a restaurant.  He wanted to go to his Dad’s favorite restaurant called Tempo.  It was kind of cute because he had never been there, but he recalled a time he conversed with his Dad about restaurants and they looked up the menu on his Dad’s iPhone and talked about what they would order.  Tempo happens to be one of the most expensive and upscale restaurants in our city, so we bargained him down to a more reasonable venue, a Greek family diner called Spilios.  Philip sat at the head of the table with 15 of our closest family:  Lolo and Lola (grandparents), his cousins, and aunts and uncles.  Philip ordered and spelled for the waitress what he wanted: sprite, fries, eggs over medium, and bacon.  We had homemade chocolate gluten-free birthday cake and everyone in the restaurant joined in to sing Happy Birthday.  Philip looked so happy.

This is the first birthday since his very first birthday, that I have not felt sadness.  I anticipate Philip’s growth like I do my other children now.  Philip’s future is so bright!  It is a clichéd saying that God works in mysterious ways, but He does!  He likes to use people in the most surprising ways.  In the Bible, we see Moses, a prince in Egypt, become the liberator of the Hebrew slaves.  We see Peter who denied Jesus 3 times in the face of fear, become the bold powerful leader of the early church who died a martyr.  It makes me rejoice with awe to see how God has upheld Philip’s namesake in the most paradoxical way.  A boy who cannot talk is indeed bearing good news to the world made manifest in his writing.  Philip’s mission is to change perceptions of autism and give a voice to autistics who cannot speak.  He is accomplishing his mission of hope daily through his blog.  As of today, readers from 39 countries have read his words.  He has encouraged children around the world like himself through exchanged emails.  He has inspired parents to seek alternative communication methods for their kids and help them persevere.  He has explained autism from his insider view to allow people to understand and know how to act with respect and kindness towards autistics.  Philip has many dreams and is actively pursuing them.  He is on his way to mainstreaming in school and is setting his sights on becoming a writer among other things.  Who would have ever thought?

This 11^th birthday is indeed a most happy occasion.  Happy Birthday Philip!  May you reach for the stars! 

                

Speaking Out

by Philip

I am autistic and I want to dare to change ideas about us.  I am reaching out to the world by a lot of ways.  One way is through blogging.  I decided to understand autism best over all experts.  I am autistic and not seeking treatment.  I am tired of seeking ways to eradicate autism.  It each day hurts one autistic too many.  Daring to steer away from torment of talking negatively about autism is the solution.  I assume to stop irresponsible ideas about autism.  The idea that autistics are without feelings is terrible.  It leaves us vulnerable to all kinds of abuse.  I am still traumatized by teachers who would restrain me at my old school.  I so want teachers to understand they hurt autistics when they think we are not smart. 

The idea that we want to be left alone is hurtful too.  Dearth of people idea is depressing.  I very much want to make friends.  I need help with it.  I like listening to kids talk to me.  Each day I sometimes catch myself determined not to let myself get depressed about not talking.  I am determined to listen to my new teachers so I can make friends (talking with my letterboard).  

Another wrong idea is to extinguish stims.  Stims relax us from sensory overload.  I can function better if I stim.  If I couldn’t stim, I wouldn’t be able to mute the distracting sounds like the refrigerator noise or from the surroundings.  Isn’t it nonsense to think we stim for no reason? 

I am happy to be each day at (my new school).  There they treat me with respect and love.  I think autistics need more acceptance and less therapy.  I think open-ended communication techniques should be emphasized.  RPM taught me to understand myself and stop storing sorrow in me.  I am thankful to Soma and Mom for talking to me and helping me understand the world better.  I want to tell parents not to give up on their kids.  It is tragic not to have a voice.