The Lost Boys of Sudan

 

For me, typing is still difficult, but I want to get back to blogging. 

They Poured Fire on Us From the Sky tells the story of the Lost Boys, who were refugees from South Sudan. For me, this book is inspiring. Their story shows how strong people can be when they have a will to survive. They decided to survive so that they would know a better life.

Like walking through the desert, I have traveled a long journey. I have never faced war or famine, but I can appreciate hopelessness and desperation. People should read this book.

Rainman and "Rain Reign"

I recently watched a movie and read a book that deal with people on the autism spectrum. 

I most thoroughly enjoyed the movie Rainman. I liked how the movie showed that someone with autism can be smart and gifted. It also was a good representation of how people with autism need a lot of patience. It can occasionally be overwhelming just trying to follow all the rules of society. A scene that I really identify with is when the fire alarm went off, and Raymond needed to get far away from the noise. Loud noises can make my head feel like it is exploding. 

I recently finished the book Rain Reign by Ann M. Martin, and I enjoyed it. The protagonist is a fifth-grade girl named Rose who is on the spectrum and also has OCD. The book describes her difficult time fitting in, her special relationship with her dog, and the conflict that occurs when her dog is missing. Rose wants to have friends so much but nobody understands her. I recommend this book, especially for older kids and teenagers.

Summer Reading

I finished my junior year of high school. I made all As. I love math and history. My favorite class last year was physics, and I am grateful that I had a teacher who gave clear, interesting lessons. In history, I enjoyed learning about World War I and II.  I am sad to think about kids who are not learning because they cannot speak so people underestimate them.

This summer, I will write about the books I am reading. Books are very important to me and so meaningful.  

I just finished reading the novel Once by Morris Gleitzman. It is a work of historical fiction that takes place during World War II.  It is a somber story about the Holocaust and a boy with an amazing imagination. It was so captivating that I read it in just two days, and I recommend it.

I write to you

In Anger

Angry at you for everything you have stolen



I write to you

With Unyielding rage

Like a bull penned in the dark, waiting to explode



I write to you

Knowing all too well the Terrible consequences of your reality

I live with them, battle them, every day



I write to you

With questions that are Impossible to answer

Because some injustices cannot be explained



I write to you

Thankful for my Sanity

Which survived your most brutal attacks



I write to you

You menacing Monster

                Offensive offender

                                Terrorizing thief

You leave the words clattering in my head but silent from my mouth

You have trespassed against me

And I do not forgive you

Breaking Free of a Voiceless Cell

I am sixteen years old and look the part, but I cannot talk to you about football, or video games or even what I want to eat for dinner.  I am a boy without a voice.

As a chubby faced toddler, I peered into the eyes of my mother, who stood before me, cookie in hand. The cookie stood between us like a silent invader. “Cookie,” my mother implored, “Just say it, Daniel. Just try.”  Her face spoke the words deep within her heart.  Her eyes gave voice to the despair that resonates every minute of the day when a child goes from angelic baby to struggling toddler.

But the word would not be spoken.  Not by me.  Nor did I speak the numerous words my parents begged me to utter. Swim, swing, pizza, ice cream, cupcake, pancake.  The favorite things of my childhood days were all there for the taking, if I only could say the word, but my mouth was my enemy.

The silent thoughts in my mind became the puzzle of my family’s existence.  Life became a battle between acceptance and perseverance.  Classrooms became a dreary part of my routine, as teachers presented lessons meant for a preschool child.  “Find the cat,” they would command, as the pictures lay before me like some mocking imposter of a friend who fills your life with seemingly positive intentions.

Just as my mouth served as a mysterious culprit, my fingers foiled every semblance of thought. I found pencils right before my eyes, but they were useless in my hands.  Like the broken wings of a bird, my fingers failed me.  Even pointing was a task too demanding.  The silly pictures all lined up in their precise rows became a chaotic swirl of colors as I willed my finger to follow the instructions in my mind.    

Years passed, and my faith began to faulter.  Life was monotonous.  I gradually came to believe that I never would be able to share even the most basic needs, much less the true passionate feelings of love for my family.  Help finally came in the form of a speech therapist named Erin. She sat across from me in her clinic with its brightly painted walls, her short hair styled like she just left a salon, stylish glasses propped on the rim of her nose, and she spoke to me, as if she could peer into my mind and see that it was brimming with knowledge. “Did you know he can spell and read lots of words?” she asked my mother. It was my life preserver in an ocean of abandoned hope.

            The moment was a turning point, though it would take many months before the optimism in Erin’s words was realized. My mother and I began a push and pull struggle, a war with my uncooperative body, made more complicated by the presence of uncertainty. “Spell, spell, spell,” she commanded, and the letters came in a variety of colors, sizes and materials. I began to believe I could overcome the monster within, the force that left me trapped somewhere in a world not one with my family’s. Gradually I found myself commanding the fingers that had never served me, and my mother began to urge me to type.  “Type it and you will get it,” she would say.  So I focused on the keys of an I-pad, and typed with the intensity of a surgeon.  Popsicle, popcorn, macaroni.  Her word was golden.  I got it all. 

            Books became the central focus of our days.  Listening to my mother read was a gift.  Her voice can convey such depth of emotion that stories come to life in my imagination.  She would pause as she read and asked a question about the story.  With each typed answer, my confidence grew, as did my mother’s faith. 

I believe that if not for my mother’s persistence I would continue to be imprisoned in a voiceless world.  For the entirety of my life, I would have been trying to be heard. Knowing that my family can now appreciate that I understand their every word fills me with renewed hope. Going to online school has changed my life. I no longer dread the future. The joy of being able to communicate cannot be expressed in words. It is immeasurable, but the moments when I finally shared words of love with the people who matter most will be the most memorable of my life. I  even have told my story on a blog with the hope of helping families like mine.

AUTHOR'S NOTE:  I wrote this for my English class last year. I have not blogged in a while because I have been busy with school.  

Navigating Solid Ground

Next week my family travels to California for a vacation.  I can hardly wait to arrive. I love the ocean, especially the rise and fall of the waves. Oceans are mesmerizing to me.  The push and pull of the tides symbolizes the struggle to maintain balance in a chaotic, turbulent world.  I love how the sand is always shifting, never settling permanently, but following the directions of the ocean, momentarily resting before being lifted and sent along a new path. 

I imagine the ocean as the system that sustains the pulse of the planet, enveloping the Earth with the force needed to balance in the universe. I find myself wanting to be a part of the ocean--a fish never needing to surface, taking oxygen from the water, diving to the ocean floor and escaping the cacophonous clutter of howls, screams, and taunts of a world moving too fast.  I could spend each day surrounded by the protective embrace of the water, enjoying the knowledge that my body was perfectly adapted to this oceanic home, and I would never again feel the pressure of trying to belong in an environment not hospitable to me.  

My autism leaves me feeling like a fish pulled from the ocean, like I am struggling to breathe. My silence only makes me feel more out of place, like a horse out of his stable but unable to race.   

This blog is like a life-vest keeping me from being completely swept aside by a world drowning in noise. This is my chance to finally say to the world

Don't count us out -- the voiceless, the kids who cannot get their bodies to cooperate.  More than you can imagine, we share the same dreams and hopes. We just want to be included. We especially want to tell you that we need your patience. We want to feel like we belong, instead of dreaming about life in another body and another place. 

I must live my life on solid ground. No amount of praying is going to give me gills. Besides, I would miss my family if I moved under the sea, although I could surely navigate water better than dry land. I must adapt to this world as much as I can, but it would be helpful if the world could adapt a bit to me.  I don't want to be ignored, and I don't want to be pitied.  I want to be accepted as someone who matters. 

To the Creative Writing Students at Pershing Middle School in Houston:

Thank you for reading my poem.  I am honored that you read it as part of your school day.  School was a difficult place for me for many reasons, so it gives me a great deal of happiness to know my words are being read by students.

To tell you a little about myself, I am fifteen years old.  My favorite things to do are biking, swimming and reading. I live with my 13-year-old sister, my parents, one dog, one cat and one fish. I love ice cream, pizza and I-HOP.  And I never had a way to tell people much of anything until I started typing.  I can make sounds, but when I try to say words the sounds do not come out like I want.  That is because I have apraxia.  Many people on the autism spectrum have apraxia.  Apraxia is the fancy way of saying that I can’t get my lips, tongue and jaw to do the things they need to do in order to make sounds into words. 

When I was in elementary school, my mom would sometimes come talk to the other students about autism and apraxia.  She would have them make certain sounds and think about what the different parts of their mouths were doing. For example, she would tell them to try making the long “E” sound and hold it out. You will notice that your face is like a tight smile. Your jaw and your chin go forward.  Try making the “D” sound (like the letter D).  You will notice that you have to put the tip of your tongue up hard against the roof of your mouth before making the E-smile.  Try making the “oo” sound (like in goose and moose), and you will see that your lips have to pucker like a fish.  To make a long “I” sound (like in “ice”), you have to open you jaw really wide.  To make the sound a “c” makes in words like “cup” or “cake”, you have to very gently touch the middle and back of your tongue to a certain place at the roof of your mouth and let just a tiny bit of air out.  You can do this with all the sounds and see that it actually takes a lot of different movements to make words.  You guys can do them all without even thinking about it.  People with apraxia, however, cannot.  I think of it like a road in my brain being obstructed.  Words in my head are like cars on a road to nowhere.  It is like the mother of all traffic jams.  I know what I want to say, but just can’t get the words out of my mouth. 

People with apraxia sometimes have difficulty programming their fingers, too.  Doctors would say people with apraxia have difficulty with motor control.  In my case, it means I cannot write with a pen or pencil, even though I have tried.  My fingers have great difficulty doing things that require tiny movements, like tying shoelaces, squeezing toothpaste onto a toothbrush, and opening things like candy wrappers and yogurt cartons.  

Learning to type was very challenging because of my apraxia.  It took a lot of practice.  I had trouble putting my finger on the correct button. It was incredibly frustrating. Have you ever felt so frustrated that you wanted to just hit something? That is how I felt early in learning to type.  I still feel like I want to hit something sometimes.  For now, I can only type with one finger.  I have to focus so intensely.  I hit keys next to the one I actually want a lot of the time, and so typing takes me a long time. I do all of my typing on an Ipad because the keyboard on my Ipad has larger buttons than what you would find on a typical computer keyboard.  

When you cannot speak and you cannot write, life can be torturous. People really do not know how to interact with someone like me, so often I have been ignored.  For a long time, going to school was completely awful because kids did not speak to me, and teachers spoke to me like I was in kindergarten.  They made assumptions because of my disability. 

If having you read my blog means that one less kid with autism is feeling lonely and miserable at school, then I will feel like I accomplished something – with your help. Talk to the kids with autism the same way you talk to your friends. Don’t ever stop talking to them, even if you don’t get much of a response.  We especially want to feel included.  Don’t assume that not speaking is the same as not understanding.  Don’t assume that someone isn’t listening just because they can’t show it.  Don’t assume that someone isn’t grateful for your friendship just because they don’t respond the way most people do. Thank you.

I love hearing from you.  Please keep reading.