Category Archives: reading & writing

Do You Prefer Writing to Speaking?

I think a great deal about writing and how I write less because it feels like a choice and more because it is a need.  I am far more comfortable writing than I am speaking, though people who know me well may find this surprising as I certainly can go on and on about things I feel passionate about.  Writing is the most honest way I can communicate.  When I am speaking to another person(s) I am easily caught up in the emotional exchange, whether it is verbal or not is of little consequence.  I am all too aware of the other person’s tone, their facial expression, the volume they are using, the emphasis they place, the way they move as they are speaking and together with the words that come out of their mouths I make interpretations about what they really mean.  I’m sometimes wrong, sometimes I’m right, but most of the time I have no idea whether I’m right or wrong because I cannot ask to verify my conclusions.

If someone raises their voice in anger, I cannot “hear” them.  Literally, they could be saying anything to me, but I cannot hear their words above the “anger tape” that is embedded in my brain and clicks on when they begin to shout.  The anger tape is ugly and cruel, words are brandished as weapons and used to make deep, painful cuts that take my breath away.  Once the tape begins to play it is almost impossible for me to turn it off.  Still I’ve gotten better and can even say, “I can’t hear you, when you’re yelling.”  Sometimes that works, sometimes it doesn’t, even so it’s better than remaining silent.  I think about these things a great deal because of my daughter, who cannot access language easily.   I think about communication and how much of it has nothing to do with actual words.  I think about how I am 52 years old and am just now beginning to really make strides in how I communicate with spoken words in the face of anger and upset.

Writing though, writing is different.  I can think about the words, I can use metaphor, simile and punctuation to enhance.  I can take my time.  I can savor and wallow, I can perseverate.  Words are little sparks, placed together they can sputter and die or surge forth creating something unexpected and beautiful.  Some days it’s easier, the words flow readily and easily.  Whatever I’m writing about takes on a life of its own, the words spill out, paragraphs come together.  On days like that it all feels magical.  But there are other days when I write and delete, I agonize, the words do not obediently fall into place, they are stubborn, they scatter or elude.  I must remind myself to breath and refocus.  But I am dogged and know from years of practice the written words will come if I’m patient.

However with the internet and social media written communication is presenting some of the same problems I have with speech.  If I’m having a written conversation with someone it can go too quickly for me.  I can’t take the time and care I want or need to say things in a way I’ve intended.  I can get swept up in the emotional content of the words being written, either my own or the other person’s and I become easily confused.  Sometimes I perceive the written words in the same way I do when someone begins yelling and I can no longer process what they are saying.  The anger tape has clicked on, the volume is so loud, the content so cruel I’m transported to that miserable place of feeling all my worst fears are being confirmed.  I have thought of this as an “anger tape” but another apt word for what happens to me is what is called “scripting”.  This is a word used often regarding autism; my anger tape is most definitely a script.  And once it’s been activated it is almost impossible for me to turn it off.

I welcome these insights.  So much about autism is covered in thick layers of seemingly impenetrable “otherness”.  That puzzle piece used to symbolize Autism isn’t doing any of us any favors by the way, but that’s worthy of a whole post all on its own.  Whenever I discover things I have experienced, things I know about myself that give me clues into what my daughter or my friends who share her neurology may be experiencing, I am grateful.  I need these insights to help me understand, but also to help me progress and grow as a writer and human being.

Em

Reading and Reading Comprehension

Emma’s teacher and I have been brainstorming new ways to increase Emma’s reading comprehension.  We have tried the standard reading comprehension questions, which, as my friend Ibby pointed out, are typically filled with inconsistencies and problems.  We’ve tried the more standard reading comprehension questions such as a story about a boy named Peter who takes a taxi to the airport.  He gets on an airplane, buckles his seat belt and the plane takes off.  The questions are then, “Who took a taxi?” The answer, obviously is Peter took a taxi.  But the second question, “Where was he going?” is tougher to answer because we aren’t given the destination other than he took a taxi to the airplane and that isn’t actually accurate as he took the taxi to the airport, but the airport isn’t part of the story.  It tells us he took a taxi and then got onto the airplane where he buckled his seat belt, so Emma answered, “Going to visit Granma in Aspen!”  And while this isn’t the answer the creators of the questions were presumably looking for, it demonstrates that Emma certainly understands what the story is about and she is adding her own personal experience to the gaping holes the story provides.  In addition, the story has been dumbed down so completely, if we are “presuming competence” then Emma must be going out of her mind with boredom.

So this is the question I come up against almost constantly – how do we make the material interesting and engaging, but not so difficult it becomes frustrating.  How do we set Emma up to succeed and not fail without boring her?  How do we deal with her resistance to reading and writing?  I’ve made some headway by trying to do some playacting and using some of her favorite songs, but reading itself remains difficult for Em and she certainly doesn’t enjoy it.  Maybe I am making it too complicated. Maybe I’m over-thinking the whole thing.  Maybe it’s better to just present reading material and have her read it silently.  Then type questions that she types the answers to.  Maybe having her read aloud is causing problems.

What I am seeing over and over is that when she has trouble with a text we make the text easier, but I don’t believe that’s the answer.  I’m not sure making it “simpler” is better.  My biggest challenge with all of this is that this is not my area of expertise and I have no idea how to proceed.  Emma’s teacher continues to try different things, but we haven’t found anything that seems to captivate, motivate or particularly interest her.  I have to think about this more.  I’ve printed out some of her favorite song lyrics, but there were too many words she couldn’t read and so much slang, I quickly abandoned the idea.  I need to find reading material that isn’t so easy it’s boring and not so difficult it makes her frustrated.  Looking back  over the past year, I can see how well she was doing and how so much of that progress has stopped.  I need to revisit those earlier concepts and see if I can find material that will pick up where we left off.

Emma’s Story

This is the story Emma made up and wrote this morning before she went to school.

I had to give her support a couple of times when she would say a word, such as “the” or “to” but then would forget to actually write it and wrote the next word (always a noun or verb) instead.  According to Dr. Marion Blank, the woman who created the literacy program we have been using with Emma for the past nine months, children on the spectrum dislike non-content words.

Emma then took her story over to her dad and read it to him!

We first met Dr. Blank almost a year ago now.  Before that first meeting we both read her book “The Reading Remedy” and were impressed by it.  In January of 2011 we began implementing her program with Emma.  During those first few months we worked on the beginning of letter formations and sequencing.  In April Emma was able to form all the letters of the alphabet and we began the first level of the literacy program.  Over the last seven months Dr. Blank has added other elements to the program, specifically designed for Emma so that we now are working on a spoken language program in conjunction with the literacy piece as well as the Phonics Plus Five and Reading Kingdom programs.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

Amanda Boxtel

Last night Richard and I went to a launch party here in New York City of Ekso Bionics with a live demonstration by Amanda Boxtel.  Amanda was in a skiing accident over 20 years ago, which left her a paraplegic.  For more than two decades Amanda has lived her life from a wheel chair.

This photo is out of focus and does not do Amanda justice.

Amanda demonstrates the power of Ekso Bionics

This quote is from Amanda’s website.

“Imagine wanting something so badly for years and years—fluctuating between acceptance of what is and hope for something better.  Imagine if that one thing you longed for is to stand tall with your legs supporting your full body weight, and then taking your first step.”

When we took Emma to Costa Rica for her first stem cell treatment, fluid seeped from her spine into her blood stream.  Suddenly she was in excruciating pain and Richard and I were terrified.  Amanda wrote me and her letter, one of many I have kept, was a calm voice of strength and reassurance.  Amanda has been to India six times for stem cell treatments.  She is an inspiration and source of hope for all.

Watching Amanda stand and then walk last night was a visual confirmation of what is possible in this world, if we never give up.  I think of Amanda often as I work with my daughter, Emma. Writing is difficult for Emma, it does not come easily.  But then walking does not come easily to Amanda either and yet she has never allowed that to slow her down.

Emma’s writing from this morning

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

A Written Conversation – Autism

Yesterday afternoon, Emma said, “These kids do not want to eat bugs.”  Then she squinted her eyes and laughed, making her shoulders shake up and down.  It was a creative version of some of the work we’ve been doing during her literacy program.  We’ve been working on sentences such as – These are kids, they want to rest.  They are resting.  Or  This is a plane.  It can fly, but someone has to make it fly.

“That’s funny, Em.  Let’s type that.”  I pulled the computer forward and gestured toward it.

Em sat down and muttered, “Shift,” as she pressed the shift key with her right index finger while simultaneously pressing the “t” on the keyboard.  She then went on to type the sentence, only needing help with remembering to include the word “do”.  I then typed back a nonsense question – “Do they want to eat birds?”

Emma giggled and shook her head no.

I pushed the computer toward her.  ”Type,” I said.

“No, they do not want to eat birds,” she wrote, being sure she made an upper case “n” for the start of the sentence.

“What do they want to eat?”  I typed.

Emma looked at me.  I shook my head, putting a finger to my lips and pushed the keyboard toward her.

Very slowly she typed, “They want to eat co”.  She smiled at me.  ”Cookies,” she whispered.  ”I need help.  Mommy hold hand.”

Cookies is not a word we’ve covered yet, so I held her hand and helped her type – cookies.

My typed conversation with Emma

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book.com

A Work In Progress

As we have added more work to Emma’s already busy schedule, I have had to adjust my own schedule to accommodate.  Since her new school year began this week, I am now doing her literacy session before the bus comes to take her to school in the morning, while Richard gets Nic ready.

This morning we worked on the word “boy”.  Emma wrote this in answer to my question – “Are these boys?”

“What are they?”

Wait for it…

Yes, they most certainly are!

The beauty of this is that all of it is done non-verbally.  Emma is able to concentrate fully on answering the questions posed by either writing or typing the sentences on the computer.  Today she learned how to use the shift key while hitting the appropriate letter to create an upper case letter to mark the beginning of a sentence.  The grin on her face when she wrote:  ”Here are some boys.  They are sitting.” complete with punctuation and upper case letters for the “H” and the “T” was as close to euphoria as one can get.  She even giggled when she was finished and beamed at me with pride.

This is the dress Emma chose to wear to school today.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

Literacy and Autism

We have been working intensively with Emma on her reading, writing, typing and more recently math and verbal skills.  The reading, writing and typing program we began in January.  It was at this time that she painstakingly learned how to form each letter of the alphabet.

This morning Emma wrote this, in answer to the written question – Did the cat jump? – after I had made the cat jump.

In answering the question – Did the boy jump? (the boy as seen in this photo was lying in a bed) Emma wrote:

In accessing Emma’s progress, I need to compare her to herself and not other children.  I have seen over the years how easy it is to become discouraged when I compare Emma to her brother or any neuro-typical child or even other children on the spectrum – unless they are much more severe.

“This isn’t going to be a sprint,” Richard once observed, after seeing yet another neurologist.

And it isn’t.  Emma is making slow and steady progress.  We work with her for about three hours every day on her literacy, math and verbal exercises.  There has been no instantaneous miracle.  She has not begun to write on her own in complete, complex and revealing sentences.  She has not gotten to the point where she is able to tell us what it is like for her to be her.  She cannot answer questions regarding anything remotely abstract.  (Which doesn’t mean I don’t continually hold out hope that one day she will.  I do.)  But at the moment, I am happy to reflect on her slow, steady progress and it fills me with joy to work with her each morning and to see these beautiful sentences that she constructs on her own.

Someone once asked me – Is it good enough?

The idea being that I had a preconceived notion of how I wanted something to be and anything short of that meant it was an utter failure.  Sometimes being “good enough” is still pretty fabulous.  So yes – Emma’s progress is good enough.  In fact, it’s better than good enough, it’s wonderful.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

What Matters

We are leaving soon.  Back to New York City where our other life awaits us.  The children need to get ready for a new school year, medical forms need to be filled out, bus companies need to be contacted and confirmed, school supplies need to be bought.  Nic will be entering 6th grade and there’s a certain excitement in that.  Emma doesn’t enter a “grade”.  She will be placed in a class with other children on the spectrum, who are near to where she is academically.  I am always filled with trepidation at the start of a new year regarding Emma.  It is difficult not to give in to fears and worries.  Will she excel?  Will her new teacher and classroom be a good fit?

The truth is, Emma has progressed more in the past seven months than she has in five years.  We attribute this to the literacy program we began in January of this year.  We have now added a math program as well as a verbal program.  Emma is working each day for about three hours on these various programs.  It has been amazing to witness.  Progress.  This is the word every specialist we’ve ever spoken to has used.  Is she progressing?  And the answer to that question is a resounding – Yes.  We cannot predict what the future holds for Emma.  We cannot know how far she will go.  But as long as she continues to progress we know we are on the right track. I heard someone say once – Progress, not perfection.  It’s an apt thought for any of us.

Emma at dusk last night

For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com

Deficits and Assets – Autism

It is easy to see what’s wrong – with the world, with other people, with ourselves.  When Emma was diagnosed with autism we were told about all that was “wrong” with her.  Her deficits were listed with great care:  Her eye contact was weak.  She showed little interest in interaction with others, she didn’t point, she didn’t ask questions about others, she showed little awareness of others, she seemed oblivious to others pain or feelings.  Her verbal skills were delayed, her fine motor skills were delayed, her ability to play, to project, to engage in any sort of fantasy or pretend play was almost non-existent.  The list went on and on.

But what of her assets?  What about all the things she did that showed tremendous creativity and intelligence?  Where was the balance in her many and varied evaluations?

When Emma went to a Special Education Pre-School I met a little boy who couldn’t have been older than three.  He was pointing to all the signs in the building and reading them.  I exclaimed to one of the therapists standing nearby how incredible this seemed to me.  She then told me he was hyperlexic and that they discouraged him from reading as it wasn’t “normal”.

I have never forgotten that.  Here was a child with an unusual ability.  A talent that could be used to further his education and perhaps interests and yet it was being discouraged.  Is that what we want from our children – to be “normal”?  What do we sacrifice in our attempts to “fit in”, to adapt, to be like everyone else?

Emma has a beautiful voice and a love of performing.  If we have guests over she asks to “sing a song” for them as she did last night.  Sometimes she needs to be reminded that the song must eventually end as she can get into a loop, singing the same refrain over and over again.  She hasn’t mastered the whole concept of “losing ones audience”.  But we encourage her singing and desire to perform just as we encourage Nic to practice his Alto Sax and the piano.  Emma has a great many assets, things she loves doing over and over again.  With Nic we use the word “practicing”, with Emma we say she is “perseverating.”  Yet in her perseveration Emma is practicing as much as Nic is.  The difference is, Emma will do the same thing over and over again for hours, whereas Nic will practice for 20 or 30 minutes and move on to something else.

Last night as guests began to arrive, Emma was upstairs in her “study room”, sitting on the floor in her party dress writing.  When I went upstairs, this is what I saw.

She was talking to herself and picking up each piece of paper then reading it before placing it back down and moving to the next.

As we had run out of lined paper, she had made the lines herself, before writing the sentence – The kids can hug.

Now this scene isn’t exactly “normal”, on the other hand very little in our household is.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Bumps In The Road

Inevitably in life we have all experienced things that have forced us to slow down, perhaps take another route, do things differently than we would have liked.  I think of these things as bumps in the road.  I try to refrain from judging them as good or bad, but just as the way things are.  There are some moments I’m better at achieving this kind of calm perspective than others.  It’s easy for me to feel all that is happening at work is “horrible”, but the truth is, a series of events have been set into motion and I have had to make the decision to fight back, to defend myself or allow another person to harm me and in harming me, harm my family.

Emma experiences her own “bumps” along the way.  Things that happen, which force us to change well laid plans.  Plans she is excited about and is looking forward to.  But more and more, lately, Emma has taken these things in stride.  She is learning to adapt to a world that is often precarious, constantly changing and shifting.  It is a wonderful thing to witness.  We all must adapt to our ever changing circumstances.

Emma makes me happy –  Both my children do.  Try not to smile while looking at this next photograph.

I dare you.  No smiling.  Come on, it’s impossible not to feel a tiny degree of joy, right?  I love that.

Here’s another photograph that can’t help but bring a smile to my face.

This was done yesterday during Emma’s “study room”.  She is writing longer and more complex sentences.  Her reading is coming along beautifully.  Excuse me while I jump up and down with excitement!

So no matter how heinous things get at work, I have my family.  My beautiful, amazing family – and that’s all I need to bring things into the proper perspective.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com