"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. 

"Erin helped me more than anyone else.  She taught me to read. She believed in me."
--Daniel's answer today when asked what he would like to tell the world about Erin


Dozens of professionals--teachers, BCBAs, STs and OTs--have worked with Daniel over the years. But there has been ONE who understood Daniel on a meaningful level, sought to challenge him and helped us finally find a path to effective communication.

Her name is Erin, and she is a ST.

I am not sure how long ago it was--maybe three or so years ago--but one day after a session with Daniel, Erin said to me, "You know he can read a lot of words, right?"

It was a moment I never will forget.  Though embarrassed to admit I was unaware, I also knew, without question, that Daniel had been underestimated his entire life.  

Once I started looking for the evidence, there it was.  I could ask him to spell a word, and he would try his best to approximate the sounds  of each letter. I could write a question and put it before him--tell me an animal that swims, what do you eat at I-hop--and he would he would do his best to verbalize the answer.

Erin suggested that we push spelling at home and aim for typing.  But she cautioned me about something she foresaw as a significant obstacle:  When Daniel tried to type, he frequently hit the button just next to, or above or below, the letter he wanted.  Erin had a theory--she wondered if Daniel wanted to see the letter simultaneously with the typing.  In other words, he was bothered by the fact that the letter isn't visible as his finger hovers above the key.  So she made a pseudo "keyboard" on paper.  Picture 26 square boxes, each with a single letter inside and also with the same letter just above, so that you can touch a letter while simultaneously seeing it just above your finger.

We started using our paper-printout-keyboard.  I'd ask questions, and he would touch letters, spelling out words like pizza, cupcakes, swim, swing, dog, cat.

(Daniel told me, after I read this post to him for his approval today, that Erin's theory wasn't accurate.  He said that "it was hard to get my eyes to focus on the letters" and that it was particularly hard to focus on the letters on the inner part of the keyboard.  I wonder if the paper keyboard was a bit of help, though, in part because the letters were much more spaced apart than those on a typical keyboard and there was no glare of a screen.  In any event, we wore out quite a few).  

It is not easy for me to describe what the process of encouraging Daniel to spell was like.  It was clear to me that Daniel knew how to spell a lot of words, BUT it wasn't easy for him to demonstrate what was in his head. He was missing his intended letter frequently--hitting a neighboring letter instead--and he needed to re-scan the keyboard after every touch.   It could be incredibly frustrating for him.

Daniel always has readily and openly shown his love for people--with a pureness and sincerity that has not diminished, even in adolescence.  Yet, his frustration could be formidable.  His efforts to type could turn into despair, anger, even rage.

So I would back off.

One of the more challenging aspects of parenting a child with a significant disability is knowing how much to push and how best to do it.  It is a heart-breaking dichotomy--accepting the idea that your child has severe limitations versus embracing the idea that he can achieve what many have suggested is not possible.  Are your efforts the stuff of parenting grit, or are they cruel--the equivalent of expecting a penguin to fly?

I would witness his frustration, his rage, and I would revert to the parent just trying to make him happy.  But in my heart I always knew--this child who found so much joy in life despite serious obstacles, who is transfixed by the way a waterfall cascades down a mountain-side, who climbs aboard roller coasters with glee, who loves nothing more than the attention of his sister Olivia, whom he has adored from the moment he saw her.....

He needed a voice.
He needed one to be safe.
He needed one to be at peace.

So I would try again.  Out with the paper keyboard.

I would sing his favorite songs, stop mid-line and wait for him to try to spell the next word.  I asked him to spell the names of all our family members, his favorite foods, his favorite places.  What is an animal that has black and white stripes?  What do you put on your pancakes?  What instrument does Olivia play?  Spell, spell, spell.

Sometimes we used wooden letters.  Sometimes we used giant paper stencil letters. Eventually we started to use the keypad accompanying Proloquo, an assisted communication program better known for its icons. (It can be a pain keeping up with a paper keyboard).  We sometimes used a stylus.

He would try so very hard.  At times it was beautiful.  At times it was ugly.

And I would stop again.

Daniel and I existed in this ebb and flow of try and stop, prod and retreat, push and relent.
For a very long time.
I made lots of mistakes.
The one constant was guilt.  Parental guilt, how I know you so damn well.

And then my mother died.

Her death was completely unexpected.
We were in town for a visit when she died.
She was talking to Daniel as he ate breakfast.  A few hours later she took her last breath.
If fear could immobilize, I would have been frozen in place.
My dad, who lived to make my mother happy....
My daughter, who basked in my mother's attention....
How would I help them?

But, most of all, how would I help Daniel....the boy who loved to follow his Gram around the kitchen as she cooked, who giggled when he heard her voice on the phone, who still, even as a teenager, loved to snuggle up next to her ..... the boy who couldn't even tell me what he was thinking....

How would I console this child who always was such a mystery to me?

Somewhere in the mix of shock and grief, I pulled out the I-pad and said:

Daniel, I need to know that you understand what has happened.
Can you tell me how you are feeling?

His anguish was evident in his face.  But still I needed more from him.  I needed words.

He gave them to me.

With a calm, focused intensity he typed:  S-a-d

Tell me why.

G-r-a-m

Yes, tell me what has happened.

D-i-e-d

And he sobbed.
We both did.
But with the tears came the stirrings of hope.

It was the moment I started to turn away from accepting limitations and embraced the notion that there really was a way for my child to express the things he needed to say.

That was ten months ago.
It has not been a linear path.
At times it has been beautiful; at times it has been ugly.
And there was another catalyst, another defining moment in this journey, that I will get to in time.
But we are now fully down a path of discovery.

We have gone from single-word answers to specific questions, to multiple sentences in response to open-ended questions.  And, glory be, he is initiating communication. He is composing letters, completing writing assignments.  And most importantly, Daniel is telling me about himself.

I have never enjoyed getting to know a person more.
One beautifully typed word at a time.

"Random thoughts go through my head all day long.... like what makes rain fall." -- Daniel, 2/8/2018

When Daniel was a toddler, he motored around the cul-de-sac where we lived, lost in something I could not identify.

Sometimes slowly, sometimes racing, he would travel in straight lines but more often in patterns -- circles, zig-zags, swirls of movement-- keeping his eyes on the ground. He would pause momentarily only to change direction, happily enthralled with whatever was going on in his head.

I was puzzled, but my father knew with a moment's observation. "He is playing with his shadow," he said with bemusement.

Indeed, he was.  Daniel looked for his shadow everywhere.  The child who never was interested in toys -- unless they involved music -- played with his shadow intently.  He looked for it everywhere, even discovering it on the wood floors in our kitchen.

I would watch with joy at his obvious pleasure, but a bit of worry, too.  I saw a beautiful boy, not even two-years-old, who was happy and healthy and transfixed by something many kids do not even notice.  But the fears of my husband were beginning to register.

Daniel was happy, and the source of his pleasure was fascinating.  But ... he did not attempt to bring me into the game; there was no pointing, no attempt at words.  Other than an occasional burst of speed in my direction, which ended in a hug, he made no attempt to connect with me as he raced about with his shadow -- for as long as I would allow.

Fast forward to yesterday.  I sat down to write about Daniel's story and knew I wanted to start at the beginning.  I thought about the little boy from all those years ago. I asked myself how I could begin to describe the toddler that he was -- the mysterious, perplexing child who obviously was taking in so much about the world around him but unable to share any of it.  That image -- the toddler racing on the pavement, staring uninterrupted at his shadow, still captures so much of the fascinating person who is finally able, at the age of 14, to share his thoughts. 

So yesterday I started to write about Daniel and his shadow.

But then I stopped.

And I went to Daniel.

I handed him the I-pad, and we had the following conversation.

ME:  Daniel, when you were really little, when we were still in Little Rock, you used to chase your shadow all over the place.  And I am wondering if you remember and if you can tell me about it.

He smiled the smile that signals I am in for something wonderful.

DANIEL: My really quite nice shadow went everywhere I went.

ME:  It did.  What else do you remember?

DANIEL:  It changed size when I went normal size.

ME:  It did!  It would change size while you stayed the same!  Do you know what caused that?

DANIEL: The sun in the sky.  In the morning my shadow was smaller than at night.

ME:  What else do you remember?

DANIEL:  On the side of me sometimes in back of me sometimes

ME:  Yep.  What else?

DANIEL:  The mailbox blocked it when I stood in certain spots.

ME:  Yep.  What was happening? 

DANIEL:  It was blocking the image.

ME:  Anything else?

DANIEL:  The shadow stayed symmetrical with my size.

ME:  I know there are a lot of other things, Daniel, that you were learning then that you couldn't talk to me about.  I know that was a lot of typing, but can you tell me just ONE more -- something you noticed about the way things worked or the way nature worked?  Just one?

DANIEL:  the very strong sound of engines starting and accelerating

This is what Daniel's life, my life, our lives, are like now. 

It didn't happen overnight -- far from it.  There was no magic fix-it.  It was slow to emerge.

But single words, typed slowly with one-finger, have turned into this ....

Amazing conversations that have me leaning over to watch his fingers, the feeling of exhilaration that comes with finally knowing my son's thoughts.

And, oh, does he have some spectacular thoughts.

This is my son.

I could not be more proud.

And I am so excited to tell you how it happened. 

One piece of the puzzle at a time.   

"There are small noticeable rays of light reflecting off the rolls of rain." 

-- Daniel's typed description of a picture from a rainy day, 3/8/2018

My son Daniel is 14.  He was diagnosed with autism at age 3.  He cannot speak or write.  

There is no way to describe the sadness that comes from not knowing what your child is thinking, not knowing what lies behind his cries or even what is inspiring a laugh.

But somehow, somewhere along the way, you push back the disappointment that comes from never seeing the first wave hello of baby fingers, much less hearing a first word or song, and you begin to study your child with unyielding intensity, with the hope that you can learn enough about him to make him happy.

You study him with a passion that surpasses anything else you have done in life.

You seize the things that make him happy and fill his every day with them.  

But your heart is always carrying the burden, the guilt, the grief ....

of not knowing, not fixing, not hearing the words that you imagine are inside his head.

You have days where hope is beyond you, and you wonder if you will ever get it back.

This blog is for families who know that feeling  (and for anyone who would like to feel inspired).

I want you to know just how much things can change, even after you think they probably never will.  

For 14 years, Daniel's communication with me consisted mostly of head nods and shakes to yes/no questions, a few word approximations, and the forms of communication parents of "nonverbal" kiddos cling to -- bringing to me the box of mac and cheese, grabbing my purse and keys when he wanted to go, pulling up pictures on my phone that represented something he wanted to say.     

But today is a new day.

Using a keypad with letters in alphabetical order on his I-pad, my son can finally give me insight into his world. 

It was far from easy.  I am not sure I ever will know all the reasons why it was so difficult, but Daniel has learned to type.  

I once wondered how much he understood.

He understands it all.

I wondered if he cared about things like Halloween costumes.

He does.

I wondered if he would ever be able to tell us if he was in pain.

He can.

And I wondered if he would understand the concept of death well enough to not think I abandoned him when my time comes to leave this world.

He understands it as well as any of us can, and as my family mourns the recent deaths of my parents,  I know just how deeply Daniel grieves the loss of his Gram and Granddad.

I know that my son's head is filled with words.  

It always has been.  

Today his fingers still do not wave or write with a pen, but they type beautiful sentences. 

Every word is a gift.

It was a struggle to get here, and it still is a work in progress with bumps along the way, but every day the window into my son's fascinating mind is opening a little more.  

I would like to share his story with people who love someone on the autism spectrum, and, most importantly, with parents seeking to reclaim a ray of light.