Making My Life My Own

by Pablo Hernández 

    Some may believe that my life must have the good things that they want—good things that they believe all people want. Have to remind them that those things are calling to them, but sometimes don’t call to me. Caring people can happily tell me that I should have a job to feel good about myself. Good feelings have to come from inside me. 

    The most appropriate job for me is to write. Other people get a job in a store or a restaurant but those would be impossible for my challenging type of body. That seems like I am picky, but this kind of learning, learning to make my body have some discipline is like asking me to climb the highest mountain every day. 

    Writing make the true life I want so much. I don’t know if I can make money writing, but it is my best vision for the life I want to live.

Straight as an Arrow by Aulton Grubbs, 10th grade

 

Finally, it’s the moment I have been fearing for what seems like countless months. I hear them call “Aulton Grubbs”. Though I’m grateful to hear my name, a shiver still runs down my terribly curved spine. It is time to get in my gown and get my IV so Dr. White can cut open my back. 

Mom and Dad help me get ready physically. The emotions are mine to deal with. Mom says, “It will be OK.” Dad says, “My man, it’s gonna work out.” He is less worried than Mom. I am more terrified than either of them. 

One of the mean, cold, cheerless nurses walks into the bland, sterile hospital room. She comes over to check my IV, and asks Mom to explain the procedure in her own words. Mom says, teary-eyed, “Dr. White has to make an incision down his back. He will move the muscle to access the spine. The doctors will screw a straight rod to his vertebrae to make my baby’s back straight again.” I groan inwardly. I’m almost 14–the only baby in the room is her.

The doctors come in, holding the syringes of the medicine that will put me to sleep. “It’s go-time. Don’t cry,” I think. Mom and Dad kiss me and tell me they will see me after the surgery. The medicine works fast. It makes really hazy images. I hear hints of voices and see visions of loving angels helping me stay coherent. My anxiety runs so swiftly, like melted snow into a fast moving stream. I cannot cool down to make the melting stop. Then, everything is black. I am taken into the operating room. My problematic body requires a team of surgeons, because my entire spine is twisted. The special doctors guide my vertebrae into a straight rod. It is screwed in place like jungle gyms are screwed together to hold children’s lives in bold, new play. My spine is going to support my life in a new way. 

The jutting feeling of having the vent removed is one of my first memories after the surgery. The noise of the vent is more terrible than the throat fire, when I notice it breathing for me. The pain is easier to endure than the depressing in…and….out, in…and…out, in…and…out sighs of the machine. Next, I see Mom. Concern floods her face. I look in her eyes and find my calm. I am in pain and I can’t move. My arms are strapped down because I try to pull the vent out of my body. I look around and find Dad. He finally looks at me. He’s been staring at the ground–I imagine to stave off tears. I look at my body. There are gobs of things attached to me. I have no idea how so many things are necessary, but I understand later. The pulse oximeter gives readings on my oxygen levels. It is like a vice on my sensitive index finger. I can always feel it so tight, like it will make my finger fall off.  There is the throbbing, perpetual squeezing of the blood pressure sleeve. Initially, I have four IVs. One is a central line, these are tools used only for the critically ill. They feed into very large veins. And, God, I hate that tube that drains all the blood from the deep, bloody ravine in my back. The blood pools in a bag connected to the tube.  There are too many devices, people and noises. I wish the pain was over already, but I still have a lot of work to do.

Over the next few days, I work on sitting and walking short distances. The pain is unrelenting. I start to struggle with breathing. Mom and Dad hold an oxygen mask over my mouth when my pulse goes hammering away or machines beep, sounding like “hazard, hazard.” They scream in my head, “you are in danger, you are not okay.”

My first treatment with the respiratory therapist is kind of no help. Eager to heal my hurting lungs, I consent to have suction that feels like intense fire licking down my throat. I badly want it to help. The night treatments are less painful because I am drowsy. Many treatments do nothing to stop the inevitable. 

Hours of labored respirations take my life. Wounds stop while I lie there in the hospital where I need many nurses and doctors to revive me. When I start breathing, the light fades. I feel that intense glow described by those who have reported on near-death experiences. It is a light brighter than the sun, releasing me from all pain. I always feel my body is a gift, but I want to see what a back without pain feels like. I have a will to live. 

To my surprise, when I open my eyes, none of the faces belong to my mom. I am struggling and I need her. I gulp for the air that doesn’t flow like I need. Hundreds of minutes pass, it seems, before Mom comes into the room. She is a gorgeous, beautiful sight for me. I know Mom reads the situation and she puts nurses in high regard until they hurt me. 

I lobby Mom to yell at the new nurse back in the ICU. I am pinned down by doctors and pain. I had ripped out one of my IVs because I wanted to go home. The other two died, just as I had. I believe the IVs ran their course with the small veins. They gave me fluid and morphine. That kind of stress on the vein is not sustainable in the long run. I sense I need a good, skilled nurse who loves me enough to get the needle in with one jab. It takes this one four tries. Mom tells her, “Stop and go get someone who knows what in the hell they are doing.” I feel like falling off the cliff again. Yet, I hold on. I get more medicine in my perfectly placed IV and it is a long, terrible night. 

Home seems very far away. I made a goal to make the hospital stay end after five days. Stealing away, in my mind, I take so much strength with prayer and my mind reveals I will need to hold on. 

I rededicate myself to healing my lungs. I can just lay in bed or I can work, and I choose to work. I walk and I will not use a walker. Mom and Dad hold my hands and replace my worry with hope. 

I am able to go home in five days. The surgery solves many problems I had been dealing with. Believing I have enough strength definitely heals me. 

Author statement: I am Aulton Joseph Grubbs. I want to show that like an old town, which is the meaning of my name, I have a legacy to create. I want to share my interpretation of events as an Autistic young man, from Tucson, who spells to communicate. This essay is about a surgery I underwent several years ago.  I feel obliged to show that I’m empathetic due to my personal experiences and that I am intelligent. Generally, I hope to make a statement about all people who do not speak; I have an understanding beyond expectation and I promise to devote my thoughts to writing for the betterment of society. 

Poetic Wishes for the World

 Joshua Greiner

Brynn F

 Advocating For Myself    

     In the beginning of my RPM journey, I had this insatiable desire to learn and do as much as I possibly could. Ready to conquer the world after years of silence, I had a lifetime of thoughts in my head. Perhaps I had the anger and frustration of a lifetime also. I wanted to prove myself and my intellect. I wanted to advocate for all non-speaking autistics. I wanted a "normal" education. What I wanted and what my unwilling body and nervous system could do were two very different things.

     I was burning out on autism and trying to do all I could to keep my head above water. I remained in denial. I pushed myself harder and asked for more work, more goals, and more activities. When all was said and done, I was overwhelmed and resented not being capable of living life to my interpretation of its fullest. I finally talked to my parents and advocated for myself. Having their support meant the world to me. I took a break from academics, learned how to conserve my energy, and accepted that it's okay to do what I can even though it seems my friends can do so much more. 

     Having time to be "me" lessened my anxiety and brought balance to my life. I still have goals and I still plan to advocate. I want to encourage others to advocate for themselves. To do life as an autistic is hard enough without adding our own preconceived notions about what we think we should be doing. 

Nadia Sohn Fink

-Nadia Sohn Fink, Rosh Hashanah 5783 (2022)

God was a firefly.

Harvest moon our witness.

God said weave the leaves

between the apples from the

Farmer's market and the

honey you didn't remember to get—

Recall your grandmother

God said hold her there:

Weave memory and light

Invite everyone in:

their grandmother,

what she always said,

what you forgot to tell her.

It's not too late or early.

Harvest moon nodded,

remembered his mother,

slipped behind the clouds.

God glowed green: Think!

Every thread

that's ever been still is!

Weave your book of life

With everyone's ancestor ink.

Thomas Callahan

 

The lightning sang me a thunder song

Then it seemed nothing is wrong

And wind was always like a child

Blowing, rushing, very wild.

NASA Webb Telescope Inspired Poem by Ryan Bellet

 

This poem is dedicated to my teacher, friend, and the most patient person I know, Kaira.

Nasa Webb telescope inspired poem 

8/23/22 

I’m amazed at the pictures from the Webb 

It makes me feel all miniscule 

And then my brain feels large 

It looks like Jupiter is in charge of the galaxy 

To ask for questions from space  

Is amazing as only a question could be 

To hear a black hole whisper and moan 

Is beyond my wildest dreams 

Only the moon is more powerful than these pictures 

It is the most light I have ever seen Jupiter in 

It makes the other planets seem like 

They exist to worship Jupiter

The Persistence Of Memory

 

This poem was inspired by Salvador Dali's 1931 painting "The Persistence of Memory"

mesa behind

melting time

melting horse

entering entrance

to slow and hot

entrance to

Mesa Land

slows time

zero o'clock

enter and 

BEWARE

- Fox Bailey

Plenty Wandering Evenings by Arth S.

 

Plenty passed on cosmic grandeur

Plenty reached out and spied

Plenty call to falling stars

Plenty watch wide-eyed

Tomorrows enter yesterdays

Time plays holes and strings

Silver streaks and stones hold

Plenty wandering evenings. 

Three Good Feelings of Spring by Owen Simons

First the green comes out

Grass growing in greens of different hues

From dark blue greens

To light yellow greens

The grasses

Are growing

Next come the leaves

They might start to bud in shades

Of yellow pink orange

Then boom

Here come the leaves 

In greens of various shades

Giving shade 

Finally flowers come

First just whites

Then yellows, then 

Pinks blues violets reds and oranges

The spring palette revealed

Owen Simons

Wishes Do Come True by Rithik Sinhasan

 

This is a memory poem I wrote about meeting Soma for the first time, 3 years after I started RPM. I still get goosebumps remembering it.

Wishes Do Come True

Anticipation wells in my heart and mind. 

Today …..

I will meet the person who changed my life 

without even knowing of my existence. 

Thanks to her method of teaching 

I can now speak,

through my letterboard. 

We pull into the small parking lot, 

fence on two sides,

cobblestones leading to the house. 

A peaceful neighborhood, 

cars parked along the curb 

in front and on the side. 

I glance behind me,

as a car slowly makes its way past us. 

I collect my backpack from our rental car. 

It’s time to go in. 

As I take the first steps,

a tiny woman comes towards me

wearing a sari. 

She speaks softly, 

guiding me towards the front door, 

ushering me into a cool space. 

Immediately,

I am surrounded 

by a wash of warm connection.

This incredible lady is a celebrity 

to me and hundreds of other autistics. 

Being in the same room 

and working with her 

is my dearest wish come true.

Rithik Sinhasan 

How I See Life by Thomas Callahan

 

 

Life is air inside me as I breathe in and out.

Life is liquid blood flowing inside me.

And Life is my solid shape that everyone sees.  

Life is my mind that is beyond any nature and 

Is more than any description. 

That is how I see life.

Thomas Callahan 

Dear Body of Mine by Ryan Shank-Rowe

                  I have pretty much decided to accept my destiny.

                  I have accepted that although my body is not under my control, my 

                  mind is my own and infinite.

Dear Body of Mine

Dear body of mine,

  How sneaky this destiny, so twisted.

I see rear view tricks

  excited to stir up chaos.

Little do you know about the driver,

   intimately trained to out pace your moves.

The trail is far stronger than the track.

 

Ryan Shank-Rowe

Feeling the Ocean by Sasha Rainer

 I wrote this poem while visiting my favorite place- Bethany Beach in Delaware. . Located by the ocean, this little town is so happy and the life there is so laid back! Some people swim or exercise, some people bike, and some like to walk by the splashing ocean waves. I like to stare at glistening water, listen to the whispering waves and soak into my thoughts about life stories. The picturesque streets of Bethany Beach are worth seeing. Each house has a unique design, yet there is a harmony of different styles and colors describing the beauty of the beach life.

Feeling the Ocean

Look at stunning sunrise,

Look at moves of the waves

With its charming fine size

Healing beauty soul craves.

Ocean moved the heart strings,

Opened mind for good hopes.

Carrying tunes under wings,

Glided worry- free slopes.

Kaavish Kapoor

The place that most speaks to our soul is longing to teach us how to become our most alive self. The details of the real beach are calming to me and really open my eyes away from life's struggles. Every wave lasts but a second. Real troubles are similar. Rather than spend time worrying about matters out of your control try to notice the lovely  movement, sounds and people surrounding you. Too much determination to remove the wave impacts your ability to live in the moment. Plain and simple. Relax and promise yourself that you'll enjoy the beach instead of staying away because of the waves.

                                               What is Your Password? 

By: Miller Laffoon 

The Mac is open. 

The screen is illuminated. 

Do you wish to use computer audio? 

I do. 

This meeting is being recorded.✓ 

Camera is on.✓ 

Rename to Miller.✓ 

Hi everyone. I’m so excited to be here. 

I’m greeted by my friends. 

I’m excited. 

I’m so stoked to be mind blown by their intelligence. Friends in New York. 

Friends in Canada. 

Friends in Arizona. 

Friends in Maryland. 

Friends from sea to shining sea. 

Friends that communicate like me. 

I’m so excited. 

My heart might burst. 

Music. 

Art. 

Books. 

Poetry. 

My mind is confetti. 

I’m excited. 

My brain might burst. 

I’m doing exceptional things. 

I’m included. 

I am who I am. 

I belong. 

I’m helping change the narrative. 

I’m moving mountains, Gigi. 

It is real. 

I’m not dreaming. 

I have friends that are like me. 

I love them. 

They love me. 

My world has changed.

I am a new human. 

Zoom.

Nature and Elements by Ruhi Khanna

 

 The nature is embedded with five elements that showers it's            

 energy to maintain a balanced life.

 Earth wind fire water space

 Earth-it gives life to souls in the maternal spirit.

 Wind-the wind storms help us realize how important storms are in          growth.

 fire-it reminds us of the pleasure one feels with purging of the waste

 Water-water washes away the mask of impurities, gets us                        energized for the isle of redemption.

 Space-it shares with us mighty secrets of infinite spirits existing             harmoniously in peace.

Sophie's World

 by Sophia Kapoor

When I was little I had so many questions

Will I sing or hear the sound of my voice

Will I sound musical or deep

What is being happy like

Is it a fleeting moment only

What matters is is the days go on

Night falls after the day

Snow falls after the sun

Whatever will be will be

I dream a little dream

I wish a little wish

My make believe perfect world

Is quite comforting to me

I wonder why I dream and believe

My dreams my dreams

I never understand what they mean

My dreams they keep me sane

Of a life without pain

I like to dream in the sky

And will keep dreaming as life passes me by...

A Little Boy Begins to Learn by Pablo Hernandez

 

Pablo is a loving autistic boy, who wishes that many non-speakers had a chance to learn.

This is the story, from my memory, of when I saw a great RPM teacher, Jackie Dorshorst, for the first time. I was six and starting to believe that I would not have a future, but she helped me love my future.

The little autistic boy felt happy. He was always glad to learn and his mom told him that he was having a lesson. Games can be good, but he couldn’t play most games because he had a mouth that would not form the words. Thinking for a while, he wondered how the teacher would act. Would she get mad? Would she make the same mistake that all teachers made – thinking that he did not want to learn or that he did not understand?

Happy thoughts fed themselves with many hopes that Jackie had for Pablo. Getting moving and getting happy can gather more momentum to make this work.

A little boy, calmed my his mother, rang the doorbell. A door swung open to reveal the calm, happy teacher waiting for them. She took them upstairs to a small room to begin. Cameras were set and paper was taken out to tell the story that she would tell him. Her voice was beautiful, having the sound of compassion.

At the same time, the dream was beginning. He thought that this might actually work. She told him a story. It was around Thanksgiving and she told stories about the Pilgrims. Autism was calling the boy to stim, to make sounds, to stand up. The teacher stuck to her lesson, understanding that the boy was still hearing her. She asked a question and wrote two choices. The much-too-scared boy thought he had really messed up. He tried to say the answer, but the wrong word flew through the air. All of his hopes were sailing out of him on the sound waves that held the wrong answer. He looked at his teacher, expecting her to make that mouth that tells you she has happy thoughts, while her eyes tell you she is frustrated, but sitting in her chair, all he saw was determination. She continued to tell the story.

Able to calm down a little, the little learner again tried to answer with his finger and not with his tricky mouth. The learning felt good. The lessons continued for years. A long time passed and the little learner became a writer.

J. Haynes

 It is about me trying to control my body. I won't give up.

Broken, falling, drowning, lost.
I'll keep giving all I’ve got.
Just let me have some control.
I don't want to fight this battle.
I would rather compromise.
Some kind of solution would be nice.
You continually betray me
with your unpredictability
I’m begging you to listen to me
I long to control you, my body.

J. Haynes

Brielle Stewart Violin Concerto No. 1 in D. Dorian

 Violin Concerto No. 1 in D. Dorian - Christ in Creation debuted December 27th, 2021 at an Inclusive Christmas Mass. These are my words to the world on my stunning work. 

About Me:

I’m Brielle Stewart. Non-speaking is what you call my wound. Now I am able to communicate. I use a board where I point to letters or a loving keyboard. So happy my music teacher, Laura Nadine Dooley, designed a board with musical notation on it. I began composing immediately. You see, music is my loving first language. Sounds made sense to me long before language did. No one taught me music theory. I was born with it in my soul. So really, God is my teacher. Thank you righteous musicians playing my music. You kindly set sounds free. Now make God happy.  Sing his praises with your gifts. 

About The Concerto:

Happily, I wrote this concerto in 2021. Now I make it my stunning Communion Meditation.  The idea started in conversation with my stunning Aulton Grubbs. He wrote gorgeous poetry that made me reflect on my life. God is in His creation.  I hear creation sing His praises. He calls us to Mass to do the same. He is in the host. He is in the wine. He is in the loving souls who eat the bread of life. I give my voice in praise with this work. 

https://m.youtube.com/watch?v=BmJZfNl2FcY