World Autism Awareness Day 2015

By Philip

I want people to know autism is another way of being. I am weary of stereotypes that make us out to be less human than neurotypicals. I have listened to people talk negatively about autism since I was diagnosed. I learned to hate myself and think I was a monster for causing so much hardship. I can't let others continue living under popular ideas about autism. Let’s pretend you are like me. You can't talk; but having a thinking mind, you can understand. Imagine you are each day answering back what you mean to say. But only you can hear it. People hear your voice saying things you don't necessarily mean. They think that’s all you are capable of thinking.  People see you stimming by your repetitive flapping or tapping. They think there is no purpose. They don't understand the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for me to keep up with, and people trying to engage me. It is hard on me to put my stims away but I try. People see your hyper movement. They prefer you to sit quietly. It’s hard to feel my body in space. I prefer to move because I can feel my body better and peacefully work. I work better sitting than I used to. The reason is now I get interesting lessons.

Interesting subjects like math, science, social studies, and language arts really stimulate my thinking, ease my mind, and teach me something about the world. I was not always taught in the way I am now. Many years of my life were spent in ABA school. I was made to do my drills over and over until I was so bored and frustrated with my teachers. I would melt down. I am telling you ABA is not the solution. ABA is long hours meeting pointless goals like pointing to flashcards and pointing to my nose. If pointless goals are your passion, then I pity your kids. People need to be able to set their own goals. No person should be without a voice. I believe in teaching communication first. Meaningful communication means being able to say what I really want to say. People must believe we are capable and our minds are intact.

Most importantly, my parents have been great. Love is felt when you are accepted. Love is felt peacefully when you are no longer seen by your momentary deficits but by your attributes that make you a complete person.

I peacefully make friends now. I learn normally. My school values me. I make my own goals. My parents support me by communicating to others about autism and me. They play. They make my life as normal as possible.

I think autism is no better or worse than a typical life. Each life is special in its own way. I love my life as autistic. 

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

For Cerebral Palsy Awareness Month by Guest Blogger Ila

The Disability Community is diverse and proud.  One of the blessings I have had as a mother of an autistic child is getting to know this community more.  Many amazing characteristics emanate from the people and families I have met who live with Autism, Down Syndrome, Cerebral Palsy, Rett's Syndrome, Tourette's Syndrome, and other disabilities.  They are appreciation for things often taken for granted, thankfulness, resilience, perseverance, friendship, humility, strength, compassion, faith, and in many cases, unexpected joy.

Ila is one such person who exudes all these qualities.  I have had the pleasure to get to know her through the blogging world.  She first reached out to us, finding Philip's blog and asking him a question.  She recently asked Philip to be a guest blogger for World Autism Awareness Day on April 2, so stay tuned! Ila lives a happy and adventurous life with Cerebral Palsy (CP).  She has an excellent blog called Ila's Crazy Thoughts.  I invite you to check it out and catch some of her refreshing exuberance!  She has returned the favor by guest blogging for us for Cerebral Palsy Awareness Month which is March.  So without further ado, I introduce you to 21-year old Ila from Italy!

Cerebral Palsy Awareness Day: Thank you CP!

WARNING: this post is extremely crazy and revolutionary.

Today I want to thank my disability for several reasons.

CP made me who I am, it is a part of me and the challenges I face make me a stronger person. The days in the hospital and the hours of therapy taught me to appreciate the small things in life. Without my disability, learning to put my shoes and braces on by myself wouldn't have been such a big accomplishment. I think that is one of the reasons why I am always so happy.

My disability is the reason why I have met many of my best friends and the awesome people in my life. If I didn't have a disability, I wouldn't have been part of this great big family, and I am so thankful for all the people from the special needs community who love me and support me everyday.

It is also a good filter: the people who don't like me because I am different are not good enough to be part of my awesome life.

Because of Cerebral Palsy, I see the world from a different perspective. I think if we all put our points of view together, we can all learn something from each other.

I can adapt: when something doesn't work for me, I find a different way to make it work. This applies to so many different things that range from brushing my hair to going on a trip with my friends.

I don't care about what people think: I have been picked on because of the way I walk, yelled at because it takes me more time to do some things, made believe I am worth less because of my disability. I don't care. I know what I'm worth, and I know that I can accomplish more than people think.

I love my life, even when it is hard. Without obstacles, I wouldn't be able to fully appreciate it.

I don't want a cure, I am happy with the person I am. I do want awareness. I want people to know what CP is, but I also want them to know that it is not a big deal and that I'm not so different from anyone else.

This post was originally posted on Ila's Crazy Thoughts. 

I Am Meaningful

By Philip Reyes

I am somebody.

I am your son.

I am a brother.

I am a cousin.

I am a student.

One day I can be an educator,

A rounded person to imitate.

I can be a worker,

Make a really good living.

I can be a loving friend, 

Someone to confide in.

I am autistic, but I am learning I am much more.

I am me and I like me a lot.

A Letter to You

This letter was originally written by Philip for his classmates at school, but he wants to share it with all of us.

Dear Classmates,

                My name is Philip.  I am almost eleven.  I want you to know I spell on my letterboard to communicate.  The reason is I am autistic and cannot talk.  I can like the same things today as you do.  I am very smart but my body is dumb.  My body will not listen to my brain.  I may want to say, “Hi, how are you?” but it comes out wrong.  I have some interests.  I like to watch soccer and TV.  I like to listen to music and read biographies.  I am pretty shy to play with other kids.  I am wanting you to simply understand who I am.  I have feelings like you.  I’m telling you to consider me as none other than like you.  Someday I hope to talk too.  I am understanding lonely, rightly so.  I am one to understand someone’s beliefs about me.  I look dumb, sorry, and fearful.  I hope to change your perceptions.  I am someone who has to work so hard to get by in this world.  I am kind of built for another planet.  To understand this, please do not tease me.  I kind of feel bad when you sometimes ignore me.  It sometimes makes me feel like I don’t matter.  Even if I look like I don’t like you, I do.  I might make a lot of noise because sometimes I can’t help it. I reach out to you so we can be friends.  Thank you for listening.

                                                                                       Sincerely, 
                                                                                       Philip   

Valentine's Message

I think love is a feeling of really liking.

I love my family.

I love God.

I love the satisfaction of accomplishment.

I love that I can communicate.

I love my new school.

I love walking around town.

I love light in each thing. (“How so,” mom asked.  Light is good.)

I love now each day. (“What do you mean?”  The present)

I love influencing someone to reach dreams.

I love to sow seeds and watch them grow. (I am telling my story and the Soma letterboard is teaching others to talk.)

One day I will love hearing I am talking.

I love interesting topics like today’s news and spiritual things.

I love coming to need open-minded education. (It is learning to think for yourself.)

I love storing open teachers.

I love America.

I love most reaching-out people (People who try to understand me.)

I love kids who understand me.

I love opportunities to prove myself.

I love answers to my questions.

I love my tons of out-of-the-box thoughts.

I love reaching out to others.

I love going to public world to explain autism.

Love is right to accept.

Most of all, love is each day the only thing that matters.