Why Talking Is Hard

By Philip

Talking is very very very hard for me. Most of the time I am meaning to talk aloud to answer a question of me or make small talk. I am talking in my head all the time. People who talk have no idea how hard it is to not be able to talk. I am able to communicate now with typing my thoughts. Lavishing a lot of love to RPM (Rapid Prompting Method) I am grateful for a way to show my intelligence to the world.

Talking is hard because a lot of things make it practically impossible for me to communicate what I really want through speech. I am unable to make my mouth move accurately enough to make properly sounded out words. I cannot enunciate the ends of my words. The most difficult thing is making my thoughts loose from my mind. I am peaceful practicing my words in my mind. But for my mind to make free my good words I must make my thoughts spell words to get them out and make sense to others. Typing is easier because I can point more accurately than coordinate my mouth and tongue.

My anxiety can also affect my communication. I get nervous if I look people in the eyes. Most of the time I avoid eye contact with people who I don't know well. If I feel comfortable with you I can look you in the eyes. I feel powerless to feel or think when I am overwhelmed with anxiety. I am peaceful around familiar people I have come to trust. 

I write words in my mind so they don't disappear. Typing my thoughts makes it meaningful to the world. I am better at writing than speaking. Saying a word is like catching a fish I think. I cast my line into a sea of words. I hope to get the right one but I often retrieve the wrong one. I am making maps of words to fish for. For example I may have my go-to words for eating. I am making food words to retrieve. I can say salad and get it. Maybe I would like a banana instead but since my mouth knows how to retrieve salad better, that's the word I say in place of banana.

I am practicing talking among my classmates. I mean to relax more around them. My classmates talk so fast. I am so slow. People have to wait for me to type. I am popular but it is hard to make good friends without talking. I am hoping to be more able to talk some day.

Copyright 2015 Philip Reyes.  All rights reserved.

Why I Can Type But Not Talk

Philip answers a Classmate's question.

Classmate's question:  How can you write all of that down, but can’t read it out loud or talk?

From Philip:

Talking is not the same as thinking.  I am able to write my thoughts because pointing is much easier for me to do than talking. You can talk without thinking very hard. It seems so easy for you. I think talking is so hard. It is a major struggle to move my lips and tongue to make the words I want to say come out. I want to be able to say what I think but what come out are usually stim words like "potty" or requests for food. These put me in a place of people thinking I am only capable of simple thought. No life is complete without thoughts of people, feelings, and love. People often think autistics are incapable of relationships, love, and empathy. That is furthest from the truth. People like me also want friends. But I am not able to join in easily because I can't talk. I wish I could. Language is no problem for me. That’s why I can write well. People need to know that autism is pretty hard to live with. It separates me from others by making my communication difficult. But if you can be patient with me and put me in your lives, I can be happy living with autism. People make my life meaningful. 

Philip's submission for the Autistic Self Advocacy Network (ASAN)

Autism Acceptance Month last April.

"i like being autistic because i am more in tune to things people don't usually notice. i am smart and observant. i like leaving people amazed when i talk to them on my ipad and they weren't expecting me to know so much. i like spelling my thoughts because my words people can see. i like being moved by music and lines of poetry. i like appreciating nature. i like beauty in God's creation. i love worshipping God in my spirit. i love that God gives all people worth. my life as autistic is meaningful." 

New Video of Philip Typing

This is a quick video I taped today to include in a talk I will be giving next month.  Enjoy!

Classmate Question on Learning to Communicate

A Classmate writes:

Hi Philip,

I just wanted to ask how you are taught or how you learn to speak sign language.  It seems hard to learn so I want to know how you learn it.  Also, how long did it take to learn what you know now?

Philip's response:

I do not know sign. I type my answers. My method of communication is Rapid Prompting Method. I learned when I was nine. I started by going to Austin, Texas to learn from Soma how to learn about lessons for kids my age. I was given lessons in math, science, history, and literature for the first time. My parents learned to teach me. I talked by pointing to letters on a letterboard to spell words. Later I learned to type. I still need an aide to help me stay focused and on task. This is because autism makes me captive to impulses. An aide helps me overcome my impulses so I can follow where my mind really wants to go. A lot of practice has gotten me far. I still have a long way to go.  People make my life better by politely helping me be peacefully included. I am always treated well at Heim. 

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

Philip's Baptism Video

This is a short clip from Philip's baptism on August 24, 2014 which was shown at our church the following week.

A Letter to Communication Supporters

Tonight I got back from Philip's school open house wondering how I could help Philip's teachers maximize their success with supporting Philip in his communication methods at school.  At school Philip uses both a letterboard and a bluetooth keyboard for an iPad to communicate with his teachers.  He communicates with his lead teacher, a speech pathologist, a teacher's assistant, and 2 classroom aides.  As to be expected, his teachers vary in their ability to work with Philip.  With one teacher, Philip can produce sentences.  For a few, he types 1-2 word responses.  And with the brand new aide, he is still struggling to even get a word out.  Some days he is better than others.  What were the reasons for this, we all wondered.  How could Philip better show what he knows with different people and with better consistency?

When I got home, it was already 9 in the evening.  I asked Philip if he wanted to write a letter to his teachers to explain how they could best support him.  I gave him the option to write it tomorrow, but he wanted to write it now.  It was that important to him.  I thought Philip's letter was very insightful and asked if he would like to share it on his blog as it might help others in a similar situation.  "Yes," he typed.  So here it is... (typing is kept as is from his Assistive Express App)

dear teachers, to help support me, you should believe i can do it. hope for the best. try hard to wear each day a daring smile. dare to try reaching me by seating me in some real nice chair. i reallize i am too tiring sometimes. you each will do best if you understand i am trying my hardest. you really don't need to lecture me so much. i am open to erasing stims to answer. to help me drop stims, drop bead of sweat by witholding talking about how trying i am and instead hold me to each task to finish. outwardly i look defiant but i so so much want to open up to you. you have futility when you are unsure of yourselves. i can feel your tension and that blocks me from writing. try to relax with me. you are healing kids from torment of silence when you reach out to me with desire to really get to know me. from, philip

First Day of 6th Grade

 

Typing

By Philip

I want to type well because it is utilised in many situations.  The real world uses the typed word all the time, for we come to communicate by texts, Facebook, and emails.  I am now a part of the digital age. 

The reality is I was special to learn to type.  Mom really pushed me to practice really hard everyday. Typing is very hard.  I need to concentrate so hard placing my finger on the right keys.  I undermine typing every time I tense up.  Tension comes from going to stoop your self down to destructive stims. My title undermining stims are having to move my body and really hurling myself on the ground.  Not remembering the reason I wanted to pour my total emotions out is frustrating.  I truly irritate myself when I really lose control of myself.  I have such a hard time focusing on what I want to say.  I need someone to keep me focused to get the right word out and initiate my movement in purposeful ways. To type my real thinking I need a trusted person to encourage me through the reaching out of my words.  I think I am improving everyday with practice. 

Typing is having a voice with your really good friends writing letters and texts.  Typing is connecting with the world. Typing is touching interested people understanding autism.  Typing is God's gift to me.

Video: Philip Typing About News in Iraq

Transcription:
Lisa: What is going on in Iraq?
Philip: In Iraq there is fighting because Muslim terrorists are openly persecuting the minorities.
L: What should we, as the US, do?
P: I think we should fight to help them.

Philip also typed today:  I want to type well because it is utilized in many situations.  Real world uses the typed word all the time.  For we come to communicate by texts, facebook, and emails.  I am now part of the digital age.

Yes you are Philip!  How exciting it is to see Philip progressing in his knowledge and skills, and becoming more and more included in the greater world.  Philip is the first to tell me he is not exceptional.  He has had the opportunity to learn to communicate because of Soma.  He now wants to make sure all those who cannot effectively speak can have the same chance to communicate through spelling and typing.  Philip wrote on his Facebook page last week:  I am not being notable being a learned kid with autism. There are many like me.  Heading to mean to rescue them from their silence.

*  For those of you wondering, Philip uses the iPad app called Assistive Express and the Apple Bluetooth Keyboard.

Update on Life

Today I noticed it has been awhile since I last blogged and this would be my first entry in May.  After a long winter this year, the sun has finally come out and given us reason to be outdoors more so we have been spending a little less time indoors writing formally.  Today I found myself thinking about what a "normal" life Philip is starting to have.  Of course his life is not normal in the way most people's lives are.  He still needs someone to support his communication all day and keep a close eye on him, but for Philip, this is as close to being part of the normal world as he has ever been.

This evening we went out for ice cream with another family.  Philip was able to order his own ice cream flavor.  He chose mint, a flavor I would have never chosen for him.  It was the first time he ordered ice cream for himself and he loved it.  I had always assumed he liked vanilla.  I wonder how many times he must have thought, "Not again, Mom.  Can't you choose something more exciting?"  My friend T asked Philip how school was going and Philip spelled, GOOD.  Then she asked if there was anything he wanted to say to her.  NOTHING, he spelled like I might imagine any other 11 year old boy respond.  I asked Philip if he had a question for her and he asked her about her job.  We all laughed in good nature about the brief exchange.

Since the weather has warmed, we have been spending more time outside taking walks, jumping on the backyard trampoline, and going to parks and playgrounds.  Philip has resumed hanging out with his friend Nelson more regularly.  He enjoys Nelson's company and though he is not able to talk to Nelson as much as he wants to during the time they meet, he writes him notes in between which I text to his mom.  Philip also has a few pen pals who are autistic and communicate as he does.  I can tell he has a real heart connection with these kids.  They share deep understandings about the world and God that we non-autistics will probably never quite grasp in the same way.    I'm so grateful to see Philip cultivating such real, meaningful friendships.

Another thing Philip has been doing is steadily working on his goals.  For the New Year he came up with his 14 resolutions for 2014 (written here).  He has not forgotten them.  Among the goals he is working on is writing his autobiography.  He uses his letterboard to write a small paragraph every few days.  It has been amazing to discover his point of view in his early years.  It no longer surprises me to find out how different it was than what I assumed.  If anything, I keep learning how faulty my eyes are.

Philip has also been working on typing with support at his forearm.  Philip sees typing as an important skill and having a voice output is an added bonus.  While Philip is quite proficient with his letterboard, being able to churn out sentences and paragraphs with relative ease, typing is a lot more work.  We have used his lesson time as a chance to practice typing his responses in short 1-3 word phrases.  Occasionally he can type a sentence.  As with everything, I continue to push the envelope to see if he can do a little more.

This week Philip typed answers to our Renaissance lesson (here is a portion):
What does Renaissance mean?  rebirth.
Where did it start? italy.
What cultures inspired the Renaissance? greek roman.
When did it start? 1300.
What era was it a reaction to? dark ages.
What happened in the dark ages? no becoming inteligent.
Would you have liked to have lived in the dark ages? no.
During the Renaissance? yes.
Why? talk about  new ideas.
What were some values of the Renaissance?  Knowledge, learning.
How was knowledge from the ancient Greek and Roman times preserved? the monks transcribed a lot of books.
Who were the monks? the help of god.

I then tried stretching him by asking him to type his answer to the question, "What is your motivation to type?"  Philip's answer:  i want to type because kids think u are smart going to do something effective.

One of the biggest achievements Philip has accomplished on his resolutions list is going to public school and being supported in his communication by his teachers.  It has been an up and down transition, but lately more up.  Last Monday, his teacher wrote me a note that Philip was able to identify notes on a staff using his letterboard in music class with typical peers.  He even went to the front of the class with his teacher to fill in a measure with its proper rhythm, notes, and rests.  They say he is getting better with his letterboard and participates in math, ELA, and social group well.  Philip wrote yesterday, I AM LEARNING SO MUCH, BELIEVE ME.  "How does it feel?" I asked.  WONDERFUL was his reply.

Relationships at home are becoming more "normal" too.  Philip and his younger sister Lia have been having their daily communication time with Lia using the letterboard.  This morning Philip remarked, LIA IS GETTING BETTER USING MY LETTERBOARD.  My husband has been reading to Philip daily.  I facilitate conversation with the family.  Philip even jokes around.  Once when his older brother Carlos was being particularly funny, Philip spelled, YOU ARE KILLING ME!  When no one laughed, he spelled, I AM MISSING SOMETHING YOU TALKERS HAVE.  THAT IS TONE OF QUOTE.  We all laughed at that one!

Like in any life, there are its valleys and peaks and everywhere in between.  Right now I am taking in the beauty of an upward climb.

 Baltimore April 2014