Tag Archives: reading

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

We Have to Keep Trying – Autism

When Emma was first diagnosed, she was four months away from her third birthday.  Since that fall, now seven years ago, we continue to show up for her in ways we could not have imagined.  As many of you with a child with autism know, engaging your child can be complicated.  Emma cannot have a “conversation” the way her neuro-typical brother, Nic can.  We cannot have discussions with her, there is no easy back and forth of ideas and opinions.  Because Emma is rigid in her desires, outings can become problematic if they are not kept to a strict schedule.  The central park carousel must be ridden and then we must go to the zoo, but only after we have watched the brass animals go around when the clock strikes every half hour.  Once in the zoo we must watch the seals being fed and then go see the penguins, followed by the aging and now blind seal, then the polar bear and finally a visit to the bats, before we can leave.  Often Emma will then insist on a visit to the petting zoo where she is more interested in patting the metal replicas of the animals, which then make the appropriate animal sounds, than the real animals.

When both the children were toddlers we were frequent visitors to the American Museum of Natural History on the upper west side of Manhattan.  During the winter months I often took the children four or five times a week.

“Once the kids are older, I hope never to go to that museum again,” I grumbled to Richard one afternoon after an exhaustive five hours spent there.  “And can we add every playground that exists?”  I added.

And then we got the diagnosis and everything was up for grabs.

My time with Emma now includes listening to music and dancing together, walks and yes, lots of playgrounds, amusement parks, the zoo, the various carousels the city has to offer, swimming, but also reading and her literacy program.  Richard still takes Emma to see “the snake bite boy”, which is Emma’s name for the American Museum of Natural History.  But it is during Emma’s “study room” sessions that I see her progress in real, identifiable and concrete ways.  It doesn’t matter whether I am feeling optimistic or not, the evidence is there, right in front of me.  We have kept a record of those first hours when she was learning to form the letter “a” to now, when she is struggling to write two and three sentences at a time.

This morning was a difficult session.  She was required to write three sentences from memory.  At a certain point I said, “We cannot give up, Em.  We have to keep trying.  I know it’s hard, but you can do this.”

Those words were probably more meaningful to me, than to her.  They would be an apt mantra for me to repeat to myself every morning.

No matter what, we cannot ever give up.  We have to keep trying.

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

An Inability to Generalize

I first heard that term used in reference to Emma almost seven years ago now.  It was one of those things people say, in this case her early intervention therapists, where you hear the words, you know what they are saying, but how exactly this is being applied to one’s own child suddenly doesn’t seem clear at all.

Emma, like many children diagnosed with autism, has a difficult time applying something she’s learned in different situations and settings.  For example when she was much younger, I tried to teach her what a t-shirt looked like by holding up an actual t-shirt, one of hers with a pink heart on it, she was able to remember what that particular t-shirt looked like and called it a “t-shirt”.  If I then took out a different t-shirt, one of mine or a different colored t-shirt from her drawer, she was not necessarily able to understand that this too was called a “t-shirt”.  If I showed her a flashcard with a green t-shirt and explained that this was the color green and then pointed to a slightly different shade of green, and perhaps on a chair, she wasn’t able to tell me that the color I was pointing to was green.  Temple Grandin, speaks about this at length, she calls it “thinking in pictures.”  She says she stores images in her mind and then flips through the images to come up with the correct one to fit the word being used.  She then goes on to describe how problematic this retrieval system is for her.  One can easily understand how difficult that must be.

Over the weekend I worked with Emma on two words:  “yes” and “not”.  “Yes” was a bit easier for her to incorporate into her writing, but “not” completely threw her.  If I said, “Emma, what are these?” and pointed to a picture of three trucks.  She answered correctly, “These are trucks.”  If I then asked her, “Are these trucks?” pointing to the trucks, she was able to understand that if you answer, “Yes, these are trucks” it didn’t change the structure of the sentence, one just needed to add “yes” to the beginning of the sentence.  But if I then asked, “Emma, are these trucks?” while pointing to three frogs, she had a terrible time answering, “These are not trucks.”  When I asked her, “Emma, give me the one that cannot walk,” from a field of four objects: a bus, a truck, a plane and a kid,” she handed me the kid.

I know Emma understands what “not” means, but in this context she was baffled.  It reminded me of those first few years when we were new to all of this, and almost constantly perplexed by almost everything she said and did.  I remember watching in dismay as she proceeded to memorize several hundred flashcards that her therapists used with her.  The therapist would hold up a card with a picture of a bike, and Emma would shout, “bike!”, the card with a dress, Emma would yell, “dress!” and on it went.  I fully expected her to go on to a regular kindergarten, at the rate she was going.  But very quickly I realized that though she had no trouble with her memory, could memorize some 400 flashcards, she could not use the information beyond the flashcards.  In other words, the information wasn’t being translated across a larger field.  She did not use the words, we now knew she knew in everyday sentences.  If we went out into the park and I saw a kid on a bike and said, “Em, look!  What’s that kid riding on?” she couldn’t tell me it was a bike.  It didn’t look exactly like the flashcard with a bike.  For one thing it was a kid’s bike and for another it had pink plastic tassels on the handlebars and a little bell with a picture of Dora on it.  This bike looked completely different from the bike on the flashcard and so Emma was at a loss as to what this new thing was called.

The good news is, Emma now can identify a bike, any bike, but it took awhile.  This is what we are up against when trying to teach Emma.

For more on Emma’s courageous journey through a childhood of autism and our admiration for her, go to: www.EmmasHopeBook.com

Emma with her green blanket when she was 3.

Emma and Art

This morning we had our parent/teacher conference with Emma’s team of teachers and therapists.  I am rarely told anything that completely catches me off guard at these meetings.  But this morning when her teachers related to us how Emma loves doing craft projects, I must admit I was astonished.

“Did you see the bracelets she made?  We sent them home in her backpack,” one of her teachers asked.

“Yes,” I said.  “But I assumed someone helped her with them.”

“No, no!  She did those all by herself,” I was told.

To say I was ecstatic is an understatement.  When I was pregnant with Emma I dreamed of the day when she would be old enough for me to teach her to knit, sew, embroider, do art projects, just as my mother had done with me.  Some of my favorite childhood memories are of my mother and I knitting, sewing, embroidering the figures for the nativity scene we made together one christmas that we still display on the mantle above my mother’s fireplace each December.  But up until now, Emma showed little if any interest in art projects, her fine motor skills are one of her biggest challenges, so my hopes of one day doing these things with her were pushed aside for the more pressing issues of helping her learn to read and write.

I am always looking for things Emma and I can do together.  Things that do not include her favorite outings – which can be very rigid and exacting – the Central Park Zoo, the American History Museum and the Central Park Carousel.  These are regulated outings with specific things that must be done in a particular order, “go see snake bite boy” in the museum, “go see bats” at the zoo.  One day, frustrated with Emma’s desire to ride the carousel over and over again I decided to just continue riding it to see how long she would do so before she asked to leave.  It took almost an hour and more than a dozen rides before she said, “All done.”  I was so dizzy I thought I was going to throw up and the next day she wanted to go back and do it all over again.

Emma has always shown an incredible memory for music, will hear a song once and then months later will hum or sing the entire song without missing a note.  I assumed, until now, that Emma’s artistic leanings were contained in her musical abilities. But every now and again I have wondered whether Emma might find some other medium with which to express herself since both her parents are artistic as is her Granma (she’ll deny this, but she is a terrific artist who did pencil sketches of us when we went on trips together that were amazing) and her great-grandmother was extremely artistic as well.  It definitely runs in the family, so to hear that Emma is deriving pleasure from her art projects at school is terrific.

Emma at school using her feet to paint.

We have a bin filled with art supplies buried somewhere in Emma’s closet at home.  When I get home this evening I will pull it out.

For more on Emma’s artistic leanings and her journey through a childhood of autism go to:  www.EmmasHopeBook.com

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

I Believe…

Every year we have a meeting with the Board of Education aka BOE.  Yesterday morning was our scheduled meeting time, but because Richard has been ill, I went alone.  I do not look forward to these yearly meetings.  And as yesterday morning got off to a bumpy start I was doing my best to bolster myself for what I knew was going to be an emotionally  difficult time.  They always are.  It is at these yearly meetings when we go over Emma’s IEP (Individualized Education Program).  Each year the BOE sends someone from their department into Emma’s classroom to observe her for a half an hour.  From that observation, a report is written, almost always a report we read with dread.  It’s not that they are unreasonable or unfair, though sometimes Emma is unrecognizable, it’s that they are stripped down to the basics.

A sample from one of these reports:  “Emma came down from the cabinet and lay down on a rug.  At 9:07, she remained lying on the rug.  At 9:08, she went out of the classroom and came back barefooted with a plastic box.  A teacher assistant showed her two bottles of paint.  She said, “no” loudly…”  The report goes on to depict a low functioning autistic child (Emma) who is somewhat responsive to the teacher’s assistant, at times non-compliant and with almost no verbal language.

This year Emma was also assessed by a psychologist sent from the BOE.  This report was even more troubling: “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.”  The report goes on:  “Emma was able to hold a pencil somewhat awkwardly and make a scribble, or simple circular motion.  She was unable to copy simple vertical and horizontal lines, or any simple recognizable geometrical designs.”

As her mother it is difficult to read these reports.  I look at my daughter, my beautiful, funny, athletic Emma and I see her potential.  I choose to believe she is capable of so much.  I choose to believe she understands so much more than she appears to.  I choose to believe she will one day read and write.  I choose to believe one day she will communicate with us.  She will tell us what it’s like for her.   I choose to believe these things because to do otherwise is not a life I want to live.  But when I am confronted with reports such as the ones I’ve quoted from, it makes me question, even if for only a moment these choices, these so called beliefs of mine.  What if I’m wrong?  A question I always follow with – what does it matter if I’m wrong?  Because if I’m wrong, I won’t find out until I’m very old or will never know because I’ll be dead. I will always choose to believe I’m right about Emma.  I have to.  All the work we do with her every single day is because I believe in her abilities.  I believe she can do more.  I believe she is capable of so much.  When I tell her we have to do yet another reading exercise or writing exercise I am doing so because I believe she can.  When I read to her about Harriet Tubman or Helen Keller or Balto or the discovery of King Tut’s tomb,  I believe she is taking it all in.  When I ask her if I should keep reading and her answer is always – yes – I take that as confirmation of my beliefs.  I know I am making a choice.  I know my decision to believe these things are based on very little, but never-the-less I believe.

I believe in Emma.

For more on Emma’s journey through a childhood of autism and my journey in parenting an autistic child, go to:  EmmasHopeBook.com

Emma waiting for her school bus this morning

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!

Learning

Since the family is now here, I’ve been getting up with Emma, so everyone else can sleep.  Emma typically wakes by 6:30AM and often a bit earlier.  Usually we go downstairs and sit together on the couch.

“Go to other pool?” Emma said this morning.

“Okay, but Joe just drove in from Denver last night, so maybe tomorrow.”

“Go to Glenwood pool tomorrow,” Emma said, nodding her head.

“Yeah.  Maybe tomorrow.  Joe’s probably pretty tired today.”

“Joe’s coming,” Emma replied.

“No.  He’s here!” I said pointing upstairs.  “He got in late last night.   He’s sleeping,” I explained.

“Joe’s sleeping.  Joe!  Can we go to the other pool?  I want to go to the Glenwood pool!”

“Okay, Em.  We’ll ask Joe when he wakes up.  How about doing our work in the study room?” I asked.

“Do study room in Mommy’s bed,” Emma said.  Before I could answer she added, “No, not going to do study room in Mommy’s bed.  We have to go to Mommy’s office just with Joe!”

“Exactly, Em.  We have to show Joe what we’re doing.” I told her.  “We have to wait until Joe wakes up.”

“We have to wait,” Emma said.

After Emma made her toast and ate it, she said, “Go see Joe.”

“We have to wait, Em.  He’s tired.  We need to let him sleep.  Okay?”

“We have to wait,” Emma said sadly.

Eventually Joe appeared and Emma jumped up and down, “It’s Joe!  Joe’s here!  Go to study room with Joe?”

Emma and I are doing the next level of her literacy program.  It’s a big step from what we’d been doing and it’s difficult for Emma.  We watch a video and then do some computer work spelling one word.  It is the same word repeated over and over in the story.  Emma then must find the right letters on the keyboard to spell the word as well as find the word within the story.  Emma does pretty well with all of that, but when we go to handwriting, it’s as though Emma has forgotten all her letters that we’ve been working on over the past few months.

The first day I found myself becoming frightened and by yesterday I felt abject terror.  Terror at the idea she won’t be able to do this next level, frightened that it’s more than her mind can retain.  I imagine she senses my fear in addition to her own anxiety and the whole thing snowballs, making it even more difficult for her.  I am relieved Joe is here, so that he can work with her a few times.  Perhaps his calm demeanor will have a positive effect on her, allowing her to relax enough that she can just concentrate on the work.

“Your fear is palpable,” Richard observed last night.

“I know it is,” I answered.  “I am terrified she won’t be able to learn this.  And then I go off to the next thought and the next, it’s horrible.”

And it is.  But it’s my fear and has little to do with anything that is actually happening.  I must learn to manage this fear as it’s getting in the way of Emma’s learning.  I must compartmentalize it.  My worries are not helping Emma.  I say this in my head while I am working with her – these are my fears, they are not real, they are just thoughts.  They do not mean anything, they are just fears.  They are not real, they are not real.

Repeat as necessary.

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.