Tomorrow is a New Chance

Tomorrow is a really exciting day.  It is the first day of my online school.  My mother applied to the school.  We were not sure if the school would let me enroll because I have never been in a normal classroom.  I have always been in a special education classroom.

Having to prove that I am smart has been frustrating.  For a long time I wanted to be able to just be known as understanding what people said.  Now I want to learn and be challenged.

I am so excited about starting my classes.  I am nervous, too.  I am worried about getting my assignments completed on time because I am slow at typing.  Knowing that my mom will help me stay organized is a big help.  Lots of hours of work have gone in to this moment.

Over the summer I had to take tests at an office of an educational diagnostician.  I had to show that I can learn.  I felt so much pressure. I so wanted to do well but it was so scary to be typing in front of someone I did not know.  I think I did OK but I could have done better.  Part of me wishes I had done better but my mom says the report helped me get into the online school.

Tomorrow is a symbol of how someone should not give up. I am so hopeful for my future.

Olivia, My Sister

Olivia is my sister.  Having a friend who is also your sibling is truly wonderful. 

Olivia is normal.  Perhaps normal is not the best way to really describe her, but dramatic begins to paint a picture.  

I love nobody the way I love Olivia, verifiably and so beautifully.  Olivia is two years and two weeks younger than I am, and I remember when she played with me when we were little toddlers. She would chase me around our house and say my name repeatedly which made me laugh. Little legs would scamper around the halls really quickly.  Somehow she never became tired of chasing after me.

Olivia is going back to school, and I am feeling sad.  Having her home for the summer is really great. We have been reading books together, sitting close to each other. I like spending the mornings reading stories about people and the challenges they face.  I am happy that we like the same kind of stories.

I know she has had to do a lot of things for herself.  I have always had to have a lot of help from my parents and so she has had to be independent.  Lots of times she has played the role of older sibling.  I am lucky to have her for a sister. 

Olivia brings so much music and laughter into my life.  Theater is her favorite thing and so she is always singing.  The songs may be loud but I can't imagine life without getting to hear her sing. 

Olivia is the most important person in my life because she understands me in ways other kids don't. Olivia is the very best sister.  I just cannot say in words how much Olivia means to me.

  

My Favorite Place, My Backyard

Listening to each drop of water just is nothing like music.  It is more like choruses of angels singing. Listening to waterfalls is like music from heaven. Little sounds envelope my ears and I imagine that the answers to all of life's mysteries can be found in the very channeling of energy that pulls the water down to the pool below.  Just near the pool I see the leaves in the trees envelope my vision and I deduce that God has placed things of beauty in our lives but whether we see them is on us.  My beautiful backyard is just my favorite place.  Life is better because I can share this with the people I love most in the world, like my good mom.  My mom found the way for me to do this, and she answered my prayers for a voice.  It is not a normal voice, but it is the voice of my brain and I find myself being glad to describe what I have always wanted to say.  

Mom's note:  Daniel is happy to be sharing his thoughts with the world and hopeful that parents of non-vocal kiddos will introduce typing to them and pursue it even when the early-going is rough.  

 

Majestic Crashes, by Daniel

Today I asked Daniel if he would like to write a piece of fiction.  He responded that "books have more words than I can type."  I told him that I had no doubt he could write a book but why not just start with a short story.  Without hesitation, he began to type.  

When typing first started to click for Daniel -- when it REALLY started to click -- it quickly became apparent that my son has a beautiful mind.  Every day brought surprises. Somewhere along the way, I stopped being surprised, but I never stop being amazed. 

This is my son's first piece of fiction:

Majestic Crashes 

Little asteroids crash to the ground.  The animals scurry to safety.  In the very chaotic scene a dark cloud begins to cover the Earth.  Life must now no longer harbor disease or disability.  Mankind must be fair and make peace.  Just born babies should be without disabilities and disease.  Justice is not a concept but a reality.  Life is better because the asteroids from heaven begin to frighten the dark forces of the world.  Stars illuminate the night sky beyond description.  God leans down from the clouds and his voice echoes from the mountains.  He finds the sick and heals them.  He finds the blind and gives them sight. He gives voices to those who cannot speak and hearing to those with no sound.  He gives strength to those whose bodies are hampered by frailty and weakness.  God comes to the world and morning brings a new day.  

My Thoughts on School, By Daniel

Growing up, I needed to tell teachers that I was doing work that was too easy.  School was really frustrating for me.  Right around kindergarten, I started to feel left out.  Kids going to my school sometimes forgot to talk to me.  Maybe they thought I didn't want them to talk to me, but I wanted it very much.

Starting in the first grade, I went to Journey.  I liked it there.  Going to Journey was the best year of elementary because the teachers didn't treat me like some little baby.  I found Journey to be a safe and happy school.  I sincerely liked my teachers there.  Kids so much tried to work hard for them.  I always had interesting work to do, like working on their computer, and singing songs.  I very much missed Journey.

In second grade, I had some good friends. They have probably not missed me but I miss them. My homeroom teacher was good to me.  She was so motherly.  I probably liked the second grade best after Journey.  The kids still talked to me.

The third grade just started going downhill.  I just needed to learn, but everything was too easy.  I started to hate school.  The truth is that I hated being there so much that I would not do what they asked.  Like my teacher would give me only easy matching sheets, and I thought this is ridiculous.  I wanted to learn math.

In fourth grade, I liked my homeroom teacher very much.  Just going to school really made me so miserable.  Kids would not talk to me.  I had terrific aides.  They were so patient.  Going to school though so made me very sad.  Just the same boring stuff was given to me every day.

In fifth grade, I went to a new school.  It was just kind of the same thing.  My teacher was very nice and dedicated.  Her class was for kids with autism.  My parents hoped I might get the help I needed but they just kept doing the same boring stuff. Life was awful.

My parents then decided to put me in a private school.  Just so much bad stuff happened there that I was relieved when my mom took me out. I hated it.

My parents then put me back in public school and I started at middle school.  My first thought was that going to middle school would be really exciting.  Life had to get better.  My teachers were nice but just being there was awful.  Kids made fun of me. Kids just laughed at me.  My only friend was Gabe. Gabe treated me with kindness and showered me with attention.

Kids should be more like Gabe.

Hardly nothing changed in the classroom.  I felt so hopeless. Nobody believed in me.  My mom started teaching me to type.  She told my teachers how I could spell.  I don't think they believed her because they didn't try to teach me typing. When my mom took me out of school it was so great.  Her decision to home school me changed my life.  Now I have hope for my future. Life is so much happier.  Knowing that I don't have to go back to middle school makes me so very happy.

Kids like me just need a way to communicate.  It needs to be the most important thing a teacher does. My teachers did not think I could do it, but I can.  

Mom's Note: Daniel chose the subject matter for this--his second post. I believe that when a person goes 14 years without a voice, he should be free to express his thoughts exactly as he wants to.  I have plenty of my own thoughts with respect to the failures of our school district.  One of the most significant is that I truly believe there were many kids in his class who would have liked to befriend Daniel, but they needed the assistance of an adult to make that happen.  I wish that our school district had been committed to ensuring meaningful inclusion for my son.  But it was not.  

(Journey refers to Journey Learning Center in Grapevine, TX.)

Daniel's First Chapter

I have never been at a loss for words.

Until recently.  

Trying to describe what is happening in my son's life--in our lives--is not easy for me.  How can you describe the single most beautiful, fascinating thing you ever have witnessed?

Today, Daniel became the writer.

And here is what he wants the world to know--at least for starters. Every word, every sentence--even every comma--all his.  

I am sharing with his permission.  As he told me, he was nervous about it, but "I want you to post it for all the kids like me.  You can tell their parents to believe in their children."  

Here is the first chapter of Daniel's story, in his own words:

I realized that I am different way back when I was little.  I knew I couldn't say what I needed to.  I remember one time my mom kept trying to get me to say cookie.  She was holding a cookie and kept asking me to say the word.  I thought that she seemed like it was so important that I say it.  Her face just seemed so sad.  I wanted to tell her that I just very much would like to say the word so badly.

Going to my grandparents' house, I always wanted to tell them how happy I was to see them. I wanted to let them know how much I loved them.

I thought that maybe one day I would wake up and the words would come out.  Often I would have just little sounds like parts of a word.  I expected to be able to one day get whole words to come out, but it never happened.  I thought I would never be able to do what I needed to make the parts of my mouth cooperate.  The words were in my head.  My parents so much wanted to know what I was thinking.

Every time that I tried to say that I understood my parents I got so frustrated.  I heard every thing they said and understood all of what they were saying. They were not really sure just how much I understood.  They have always tried to help me be happy but I was really miserable.  

I so much kept on hoping that I one day would be able to make them know that I am understanding and I am smart.  

I don't know what I would have done if I had to go through life every day without any words.  I would have lost the true desire to live.  I would have been trapped in only my head and then I think I would have lost my mind.  The world would have remained the same monotonous place and I think I would have given up on ever being able to talk to anyone.  

People have underestimated me.  Like at school, people treated me like I was a little kid.  People would assume that I was like a baby.  They even laughed at me like I would not know they were making fun of me.  Teachers thought I was so easily entertained.  Day after day, I wanted to learn but nobody would teach me.  

I am so glad my mother took me out of school.  I am just making so much progress with typing.  I am going to get to pursue a good education and a new life.  Just the knowledge that my family understands I am listening is so wonderful.  

Life is just harder and really frustrating when you have autism.  I wish the world would understand that people with autism just want to have friends.  

"Now I can tell people what I want to say.  I am very much excited about this.  My just monotonous life shall be so much better.  You did not know that I have a just like you brain." -- Daniel's thoughts on typing with a QWERTY keyboard and Word Prediction, typed April 19, 2018,

Last October I pulled Daniel out of school.
I consider it the best decision I ever made.

I could write volumes about how the public school system failed Daniel. But, for now, I want to focus on the positive things going on his life, and there is so very much of that.   (It is not an exaggeration to say, though, that Daniel languished, for years, under a school roof.)

On October 17, Daniel and I started what I told him would be our "school at home" experience, which would mean working every day, really hard, with the letters on his keyboard.

We started our first school-at-home day with a book.  I can't remember which one.  But when you don't know what to do, why not read a book.

We read and read and read.  And I asked and asked and asked.

What did the boy eat?  What did the dog want?  Where did the girl go?

Daniel answered.  With one finger, he typed the answers, frequently furrowing his brow and looking over his shoulder, as if the very sight of the keyboard was painful to his eyes, or the calling-up of the correct words required every bit of energy he had, or both.  But the answers were right there--in his head.

I almost am too embarrassed to admit that those first few books were so juvenile.  Somewhere along the way, I had stopped reading to Daniel--one of many mistakes I have made as his mom.  I wasn't sure if he was even listening, much less understanding, and I had a daughter who implored me to read to her every night.  So bedtime consisted of story-books for Olivia, but only songs and snuggles for Daniel.  

My heart aches at the realization that he yearned for story books, too.  

I quickly realized that Daniel not only could answer simple "who, what and where" questions  about the stories but also "why" questions that required him to ascertain a person's plans and motivation.  (One of the conceptions of people severely affected by autism is that they have difficulty relating to, and understanding, what another person is thinking or feeling.  I know now that in Daniel's case that is a complete misconception, and I think that also is most likely true for the vast majority of people living with autism.  An inability to communicate is never synonymous with an inability to understand.)

His first full sentence on that initial school-at-home day was in response to the question, "What do you think the dog is going to do now that Nancy left the room?"

The dog will eat the cake.

It was such a victory.  I considered every word, every sentence, a gift--and a testament to the decision to take him out of school.

After a few days of books meant for early readers, I took to Olivia's room in search of more difficult stories.  I found Beverly Cleary's Ralph the Mouse series.  He loved it.  But poor Daniel. I tested and I tested--seeking confirmation that I wasn't living in a dream, that my son who had gone 14 years with extremely limited communication was not only typing words but comprehending what I read to him. 

Each time we sat down to read, I would quiz him on the events from the previous chapters.  

What did the boy give to Ralph?

A toy motorcycle

Why do the mice like it when children stay in the hotel rooms?

Because they are messy

Why is Ralph upset?

He can't ride his motorcycle.

I also learned that Daniel knew the meanings of every word we came across.

What does it mean to confess?

telling something you did bad  

What does it mean when someone is self-centered?

They think only of themselves 

What does it mean to have empathy?

To understand how other people feel 

For 14 years, I wondered if Daniel understood abstract concepts.

Time to wonder no more.

During our Ralph reading came the first moment of personal sharing--the first time I learned something about my son because he told me with words.

Ralph had described how much he loved the smell of peanut butter.  I turned to Daniel and said, "Can you tell me a smell that you really love?"

He smiled and typed: Oranges

How do you measure the joy in a word?

When your child has been deprived of a voice for 14 years, and he finally is offering a word to share something about himself--even something as seemingly simple as a favorite smell--you cannot.  The joy rises through you and you wonder if you might be lifted off the ground.  You know you will remember it forever.

We loved Ralph so much that we were sorry to see his story end.  But my son was able to tell me which of the three books was his favorite, and we discussed literary terms like plot, idioms and metaphors.  (Have I mentioned that the school district was under the impression that he could not identify the letters of the alphabet?)

Next we picked up Charlotte's Web, and before we started I asked Daniel if he already knew anything about the story,

Only that it is about a spider

So many years I wondered:
Was he listening, was he understanding, was receptive language hard for him?

And he knew that ole Charlotte is a spider.

Yes, yes and no.

The past six months have been filled with moments of indescribable elation.  I have learned so many things about Daniel that I never would have known without his words.

I have loved Daniel since the moment I first saw those two blue lines on a stick.  I loved the very thought of him; I loved the feel of him in my arms after he entered the world.  I love the way he taught himself to swim, his curiosity about the things he encounters in nature, the way he lights up whenever his family is all together.  

I love his heart.

But I always felt like there was so very much I could not know.  I had started to wonder if those things would forever be out of reach.

They are not.

As Daniel put it--I am very much excited about this. His brain is not really a "just like you brain."  It is unique, and I know now that he sees the world in amazing detail.  As I continue to learn more about him, I only want to know more.  It truly is a pleasure to finally be meeting the son I always have loved.