Category Archives: reading & writing

Emma’s Handwriting

As those of you who follow this blog know, Joe (click on “Joe” to read an entire post devoted to him regarding his tireless efforts and hard work with our daughter, Emma) and I have been working diligently with Emma on her reading and writing skills and comprehension.  So when she requested Sunday morning to “go to the study room”, I wasn’t particularly surprised.  Just as she inquired however, Nic and his friend Max, who had spent the night, wandered into the kitchen asking for french toast.

“Hang on, Em.  Let me make the boys breakfast and then we’ll do study room,” I said.

“Study room now?”  Emma replied.

“Would you like to write something?” I asked pulling a pad of writing paper out.

“Yes.” Emma said, much to my surprise as handwriting is by far the most challenging aspect of the literacy program we’ve implemented for Emma.

“Okay.  Here.  Go ahead while I make breakfast.”  As I began the preparations for french toast I could see Emma at the dining room table writing.  I quelled the urge to go over and look.

After a few minutes Emma said, “Good job drawing hand!”

I went over to see and saw that above the drawing of her left hand she had written, “This a kid”.

What was remarkable about this was that she came up with this sentence on her own, did not copy it from anywhere, initiated the whole thing, used an upper case “T” to begin the sentence and other than the absence of the “is” and a period at the end, wrote a complete, grammatically correct sentence.  This is not a child who is learning their alphabet, this is a child who is reading and writing.  It was breathtakingly exciting.

“Good drawing hand!” Emma said when she saw me staring down at her work.

“Em!  You wrote – This a kid – that’s fantastic!” I answered.  “Look, you just forgot the is,” I said pointing to the space between this and a.  It’s fantastic!  And this has is in it, so it’s easy to forget.”

“Yeah!” Emma said, smiling broadly.

“I love how you wrote that, Em.  It’s so great!” I said staring at her handwriting and feeling tremendous pride.

“You writing,” Emma said.

“You have to say – I’m writing,” I told her.

“I’m writing,” she said.

“Hey, let’s write – This is a hand,” I said while writing the words to the right of her hand drawing.  “Now you write – hand,” I instructed.

Emma carefully took the marker and wrote – hand – underneath mine.

“That’s great.  And look, let’s write – Emma’s hand – here,” I said.

“Yeah.  That’s Emma’s hand!” she said, pointing.

“Wow, Em.  This is terrific,” I told her.

“Study room now?” Emma asked.

“Yes!  Let’s do your study room now,” I said.  “But first let’s write – This is a kid – again.”

Very methodically Emma took a separate piece of paper and wrote – This is a kid.  Then she reached over and made the toy kid sit on the edge of the page.

“Em, I’m so proud of you,” I told her.

“Emma’s writing!” Emma said, happily.

“I’m writing.  You say – I’m writing,” I said.

“I’m writing!”  Emma repeated.

Yes, she is.

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

One Day…

This weekend while working with Emma on her literacy program I showed her an index card with the words – Put the bus here – written on it.  I then pointed to a place on the table to the right of her and waited.  A frog, airplane, bus and kid were all laid out in front of her.  Without hesitation she picked up the bus and placed it where I was pointing.  Were Emma a neuro-typical nine year old child this would not elicit the inward gasp of excitement I found unable to stifle.  But Emma is not a neuro-typical nine year old child.  Emma is a moderately autistic child with massive pervasive neurological issues affecting her speech, imagination, reasoning, ability to conceptualize, communicate, initiate and interact.  To witness her reading and understanding what she’s just read with an action demonstrating comprehension is nothing short of miraculous.

And it fills me with hope.

If Emma is capable of reading, then it stands to reason she will be able to write as well.  What will she choose to write about?  What does she think about?  How does she feel?  Is she aware of her differences?  Does she wish she had friends the way her brother Nic does?  Does she know communicating is more difficult for her than for other people?  What is it like to be Emma?

Other autistic children and adults, many of them non-verbal have found ways to communicate to us about their world.

One such person is Carly Fleishmann, a non-verbal autistic teenager who has found her voice through typing and now has her own blog:  Carly’s Voice

I cannot know what the future holds for Emma.  What I do know is that if we continue to do everything in our power to help her, she will one day be able to answer our questions and communicate with us.  One day Emma will be able to let us in.  One day…

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

A Light Bulb Moment

This morning Emma, Joe and I went into “Emma’s Study Room”, which is where we go to work on Emma’s literacy program.  Emma asks to do this each morning.  Earlier this morning Joe and I discussed various strategies to help Emma with the handwriting portion.  Up until this morning’s session, the handwriting part has been extremely difficult for Emma.  Her anxiety level (and mine) have been counter productive – with Emma fidgeting, pushing her chair away from the desk and saying things like – “study room all done now.”

We began with the video – a short story about a man washing his car with a rag.  Emma seemed mildly uninterested, but watched the short clip and then was asked to find the word from a series of sentences, which she did with little problem.  She then was instructed to spell the word, again with few problems and when the computer portion was over we went to the handwriting part.  But today we implemented some other techniques that we had used in the first part of the literacy program, exercises she was familiar with and as a result had no problem doing.  We then moved on to the more problematic spelling of the single three letter word, but this time Emma had no problem!  As I watched her work, I could see that something had clicked.  It was an amazing moment.  It reminded me of the moment when Helen Keller finally realizes the water dribbling through her hand is the word Annie Sullivan is spelling for her.

I felt such unbelievable joy witnessing Emma “getting it”.  The look on her face, the smile… it was priceless.  To say that I am proud of her is a vast understatement.  I am ecstatic for her as well as proud, so very, very proud of her.

We continued through the other exercises with amazing results.  At a certain point I looked over at Joe and made a Can-You-Believe-This?! face.  And after we were finished I went to tell Richard, overwhelmed with happiness and relief.  What I witnessed was the beginning of reading and writing comprehension and it beats the joy I felt when Emma took her first steps.

As a side note, I will be adding the link to this blog on each post as various posts are getting picked up elsewhere.  For those who read Emma’s Hope Book already, just ignore and for those of you new to it, welcome!

Emma’s “Study Room”

Every morning, since we arrived in Aspen, Emma wakes up somewhere between 5:30 – 6:00AM and comes into my bedroom to snuggle and sing songs.  At around 6:30AM I will say, “Ready to go to work?”

“One more minute,” is Emma’s usual response.

After a few minutes I’ll say, “C’mon.  Let’s go!”

“Time to go to the study room!” Emma will say in a sing-songy voice.

Emma’s “study room” is the room adjoining my bedroom with a desk, my computer, a fax/scanner/copier machine and a twin bed, where one of the children often sleep if they don’t feel well.  Though neither of them has chosen to sleep there for over a year now.

We go into Emma’s “study room” to work on writing individual letters, sequencing, and typing.  The letter “s” is difficult for Emma and she still needs occasional wrist support, but otherwise her handwriting is coming along beautifully.

“Good!” she’ll say after she’s made a particularly good looking “e”.

“Beautiful!” I’ll agree.

“No,” she’ll say after trying to make a “c” but the lower part ended up below the line.

Sometimes she’ll self correct and I’ll say, “No.  It’s okay Em.  That’s a fine looking “t”.

“Okay,” she’ll say.

Typically we then move on to typing.  I hold up a series of letters, which she then points to the corresponding letters on a sheet resembling the pad on a computer.  Same formation, same positioning of letters except they are all in lower case, just like the letters I hold up.  The letter “q” she confuses with a “p’, but other than that she’s doing incredibly well.  Then we move onto the computer itself, which is much trickier as the letters are all in upper case and she must translate them from the lower case letters I hold up to the correct upper case letters on the keyboard pad of the computer.

Finally we end with a series of sequencing exercises using colored tiles and letter tiles. Sometimes I have to cover the letters or colored tiles and she must remember what they were.  If they are random, say – red, white, yellow – she often can’t remember what they are.  But if the colors are in a pattern – yellow, black, black, yellow – she almost always gets them right.

“No, no, no,” she said, yesterday when she put the wrong tiles down, after I covered the four tiles.

“Try again,” I said.

“There,” she said when I lifted the paper covering the four tiles and she saw she’d gotten them right.

As the sessions go on they become more difficult, until eventually we will move on to reading.

We almost always end our sessions with quietly sitting opposite each other for a few minutes.  Emma calls this “deep breathing time.”  Except we don’t breath deeply, we just sit, hands in our laps and stare into the mid distance.  After we’ve sat for a few minutes, I’ll put my hands on Emma’s shoulders and say, “Good!”  She always gives me a huge grin, before running off.

A year ago, I would have been dismayed, had I been able to peek into the future and seen Emma doing these exercises.  Which just goes to show, I should never try to predict the future and never underestimate what she is capable of.

Ups and Downs

I was reading an article this morning on RNA interference when the following quote by a pharmacology professor caught my eye – “A lot of excitement for RNAi was irrationally high to begin with, and now is irrationally low.”

It reminded me of how I have felt each and every time we have gone to South America for one of Emma’s stem cell treatments.  In the beginning I am elated, sure this will be the thing that causes her to crawl out from beneath the fog of her autism.  Then after we’ve returned home, I am guardedly hopeful, watching, waiting and after a few more weeks I’m convinced the whole thing was an exercise in heartache, stress and worry.

I go from the extreme high of wishing myself into believing this will prove a miracle to the low of believing it’s a complete waste of time or worse.  What I have not managed as well is that whole grey area residing between those two states.  Which is why the brain scans are so essential.  Though I have moments of disregarding those as well.  If I relied entirely on my perceptions, often clouded by feelings, desires, wishes, expectations, I would be making some very poor decisions.

We have been working with Emma on her handwriting and teaching her to type using a program developed by a literacy specialist.  It has proven to be quite an incredible experience.  Emma is now writing legible letters and is able to match two and three letter words.  She is also learning to type on a computer keyboard.

A couple of things I’ve realized:

1) Most written words are written in lower case letters, yet most writing programs teach upper case letters first.

2) All the letters on a keyboard are in upper case, making it very difficult for a child to translate the letter from lower to upper or vis a versa.  Something I had never “noticed” before until we began working on typing with Emma.  She is getting the hang of it, but it’s been interesting.

3) The letters Gg, Qq, Ee, Rr, Bb, Dd and Aa are completely different depending on whether they are in lower or upper case.

As I am not a teacher – these rather obvious items I’ve listed are something I had taken for granted until now.  I am amazed how well Emma is doing.  She seems to understand the same letters can look different and yet are the same.   But, and I do need to say this, Joe and I have been working with her for a number of weeks now and I was feeling discouraged that she wasn’t progressing as well as she should.  She still has trouble writing the lower case letter e.  K is often difficult and she makes her lower case s too big.  We needed to tape one of my sessions with her to send to the literacy specialist who developed the program (Joe did a great job taping) and Richard was the one who transferred it into a file we could email.

When I got home last night Richard said, “I edited the tape.  Emma’s doing really well!”

“Do you think so?”

“Oh yeah.  It’s amazing!”  Richard’s excitement was so authentic, it made me wonder why I wasn’t “seeing” it.

“Really?” I asked again.

“Yeah!  She’s doing great!”

That conversation was one more example of how two people living with the same child can view that child’s progress very differently.  My expectations are something I need to constantly keep in check.  If I look at the tape of Emma and how she is moving forward in a number of ways, I can see the progress and it’s impressive.

If I then compare Emma to what Nic was doing at her age, I am back in despair.

“So don’t do it,” a friend of mine said the other day when I related this.

And that’s really the point.  Living in the grey is sometimes a lot harder than one would think.