Tag Archives: autism children

The School Bus

Posted on November 24, 2010 by | Leave a comment

We received a call yesterday from Emma’s school saying the bus driver had yelled at Emma in front of the other children when she was getting off the bus. The driver claimed Emma had spit in her face. Richard and I were incredulous as neither of us have ever seen Emma spit nor did I think Emma was physically capable of projecting a pool of saliva from her mouth at a target, human or otherwise.
When we asked Emma what happened on the bus, she replied, “Emma so sad. You make Emma cry. Emma want to get off the bus.”
“Why did you want to get off the bus, Em?”
“Lady. You have to ask the lady. Lady, can I get off the bus?” Emma said while wrapping a strand of hair around and around her finger.
“What did the lady say?”
“NO! Emma sad.”
“But Em, what happened?”
“Emma go to gymnastics?” She looked at me and nodded her head.
“Yes, Sweetie. You’re going to gymnastics this afternoon,” I said.
By the time the bus arrived, Richard and I were no clearer on the actual events than before. As with many autistic children, their (in)ability to speak is much more than a language delay. The language they have is often garbled, confused and the thinking difficult, if impossible to follow. Emma’s reference to gymnastics in answer to my request for clarification as to the events on the bus suggested she feared she wouldn’t be able to go to gymnastics as a result. She had done something wrong, someone was angry, her beloved gymnastics would be taken away. Even after I reassured her she would be attending gymnastics, she continued to ask several more times.
Last night Emma woke me at 1:47AM screaming, “Mommy! Mommy! Mommy come!”
When I went into her room I told her if she continued to scream we would not let her go to gymnastics, something she’s been looking forward to for several days. It does make sense how she might conclude gymnastics was up for grabs, given the upset on the bus.
When the bus arrived we asked what happened.
The driver leaned forward and said, “She spit in my face. I told her that wasn’t okay.”
“She spit in your face?” I repeated.
“Yeah. In my face. She sits there spitting on the floor and then blames another kid, but it’s not him that’s doing it, it’s her. She’s the one who’s spitting,” the driver said.
“It’s hard for us to believe this, as we’ve never seen her spit at anyone,” Richard replied.
“Yeah, well I think she picked it up from the other kid, cause he use to spit, but now she does more than him and blames him.”
“Okay. Then what happened?”
“I told her – it’s not okay. You can’t do that,” the driver said. “She went like this,” the driver took her hand put it to her mouth and flicked out with her fingers. “She spit at me and I told her you can’t do that.”
“Okay, do you mind if I get on the bus to talk to her?” I asked.
The bus driver nodded her head.
“Em, you can’t spit. Do you know what that means?” I asked.
Emma stared at me and said, “You have to ask Mommy.”
“No Em. You just can’t spit. You have to keep your fingers out of your mouth. You have to keep your gum in your mouth. Okay?”
“Okay,” Emma answered.
“She doesn’t listen,” the bus matron said.
“It’s not that she doesn’t listen, it’s that she doesn’t understand what’s being said to her,” I began.
“Yeah, but she doesn’t listen,” the matron said, shaking her head and staring at Emma who was now seated directly behind the driver with her seat belt buckled.
“She doesn’t understand what’s being said to her, it’s different than not listening,” I said.
“No I know. I understand these kid’s situation. I’ve been driving kids like this for a long time,” the driver said. The matron stood by shaking her head. As all of this was going on one of the children kept getting up from her seat and standing in the aisle.
“Logan! Sit back down!” the driver said, loudly.
“Logan! Sit down!” Emma parroted.
“She doesn’t understand why you’re angry with her. She doesn’t understand what it means to spit at someone,” I said. “Yelling at her won’t make her understand any better.”
“Oh no. I don’t yell. I never yelled at her,” the driver said. “I just told her like this,” she then spoke in a kind voice, “You can’t do that, it’s not okay.”
Richard and I looked at one another. “Okay, well please tell us if anything like this happens again.”
“She’ll have a new driver after the holiday,” the driver informed us. “But I know her, she’s a friend of mine, I’ll tell her what’s going on.”
By the time the bus left with Emma inside it, Richard and I stood together and watched it go. I felt a familiar constriction in my chest. How can we know what really happened? Our daughter is incapable of telling us her version of what occurred, the school wasn’t on the bus until after the “incident” happened, though they did witness the driver shouting at Emma. The accounts from the driver and the bus matron, who appear to have little if any knowledge of autism and certainly no training in autism, are all we have.

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Milestones and Miracles

Posted on November 21, 2010 by | 1 comment

As we sat at the dinner table last night celebrating our dear friend Claudie’s birthday, I saw Emma ride up to Nic on her scooter and stand in front of him as he sat on the couch listening to music on his iPod.

“Hey Nic!” she said.

It was very unusual for Emma to go up to Nic and speak to him so directly so I nudged Ariane who was sitting next to me, and pointed in their direction.

“Hey Nic!” Emma repeated. “Will you come to mommy’s room with me and watch Elmo?”

We were absolutely floored. Ecstatic. Choking up with emotion. Not only was this one of the longest and most articulate sentences Emma has ever spoken, it was also directed at Nic, asking him to do something together with her.

For any parent of two normal children, this would be something you take totally for granted — something you would have witnessed twenty million times by the time your children were 10 and 8 years old. For us it was first, a true milestone, as significant as when Nic and Emma took their first steps or spoke their first words. More than that, it was something we had hoped and prayed would happen for such a very long time. Something we feared might never happen.

It was a miracle.

We looked at our guests with our mouths hanging open in shock and wonder, then began hugging and kissing each other in joy and gratitude. It was such a special moment, made even more special by the great good fortune of being able to share that wondrous milestone with such special friends. Claudie said it was the best birthday present she ever had. Elaine knew exactly what we were feeling and how significant it was, having experienced parental challenges so much more arduous and painful than anything we have weathered.

I went with Emma and Nic into our bedroom and helped her put the Elmo DVD on, then spied on them from around the corner, my ears perked up for any more dialog that might be forthcoming. They just sat together silently, watching Elmo, Nic barely able to tolerate it, but being such a great sport, Emma looking so happy in his company.

Eyes were teary as we put the candles on Claudie’s cake, then called for Nic and Emma to join us. Emma came running in like a freight train, since two of her favorite activities in the world are singing Happy Birthday and blowing out candles. True to form, Emma led the chorus, singing as loudly and cheerfully as always. When the song finished, Claudie started to blow out the candles but Emma leaned across the table and blew out most of them first.

“Emma, those are Claudie’s candles,” Ariane admonished, then asked Claudie if she wanted us to re-light them.

“No,” Claudie said, “I already made my wish.”

And we had one of ours granted.

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Emma Painting – Some Additional Thoughts

Posted on November 11, 2010 by | Leave a comment

What struck me as I watched Emma paint the other day was how she has placing the colors on the paper.  She was not simply dipping her brush into the paint as it was placed on her palette.  She was looking at the colors then very methodically placing them on the paper in a specific way.  In the beginning with a slash of color near the middle of the paper, she then added another slash nearby.  As I watched she continued with a streak of color on one side fanning out from the middle.  She did not simply alternate colors – first one side then the other, but seemed to consider where the next color would go.   None of this was done in a perseverative way.  What struck me was how non-perseverative the process was.  She seemed to study her choices of both color and their placement before putting brush to paper.

This morning I said, “Hey Em!  Want to paint?”

“No thank you,” she said as she shot by me on her scooter.

“Hey Nic!  Want to paint something?” I asked.

“No. I’m good, Mom,” came his reply.

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Emma Paints

Posted on November 10, 2010 by | Leave a comment

About a week ago I bought some acrylic paints and brushes with the hope  Nic and Emma would feel motivated to paint.  Upon seeing the art supplies Nic said, “Ooh, ooh!  I want to paint something!”

So we set up the easel with new paper and unwrapped all the brushes and paints.  Emma stood nearby and watched.

When Nic was finished painting a particularly gruesome monster – his specialty, Emma said, “Mommy!  Can I have a turn to the paint?”

“Absolutely Em.  Here let me get you a fresh piece of paper.”

I showed Emma how to hold the palette in one hand with the paintbrush in the other and then stood back and watched.  It was fascinating.  She was very careful, methodical even, considered her choices before putting brush to paper.  This series of photographs show in chronological order her “process”.  The whole piece took about twenty to twenty five minutes to complete with neither Nic nor I saying a word.

Emma begins

The Final Touch

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A Phone Call

Posted on November 4, 2010 by | Leave a comment

The other day I received a phone call from Joe.  “We’re at the playground.  Emma asked to speak with you,” Joe said.

I could hear Emma crying in the background.  “You have to ask Mommy,” I heard her say.

“Hi Em.  What’s going on?” I asked.  I could hear her breathing into the phone.

“Mommy!  You have to ask Mommy.  Mommy?”  Emma said.

“What is it, Em?  Are you okay?”

“Mommy can I take off my other shoe?” Emma sobbed.

“Oh, Emmy.  It’s too cold outside.  You have to keep your shoes on, but when you get home you can take them off,” I said.  Emma’s wails of despair rose and fell.  “Em, it’s okay.  It’s going to be okay.”

“Mommy?  I want to take shoes off!” She cried.

“I know, Sweetie.  But it’s really cold out and you can’t take them off.  When you get home you can.”

“Mommy!  Mommy!  Come!”  Emma said.

I could hear Joe reasoning with her, offering her choices.  Asking her if she’d like to go to the bookstore or stay in the playground.  When she chose the playground he asked her if she’d like to go home and take her shoes off or stay in the playground and keep them on.

“No!  Stay in playground,” Emma said.

“Okay, she’ll be okay,” Joe assured me before hanging up.

I can count on one hand how many times I’ve had anything resembling a phone conversation with Emma.  That she asked to call me was exceptional.  Once the call was made she stayed and listened, didn’t like my answer, but responded to it without walking away.  I know it may seem I’m clutching at straws here, but the telephone is an abstract concept.  Add to that, the fact Emma has difficulty communicating through language and the phone becomes a formidable object.

Years ago when I was in Paris visiting my aunt, the phone rang while she was in the bathroom.   She asked me to find out who was calling.  I was absolutely terrified to pick up the receiver.  What if they spoke too quickly for me to understand?  What if they asked me a question I didn’t know the words to formulate a proper answer?  Hearing a voice without accompanying gestures or facial expressions to aid me made communicating in a language not my own all the more daunting.

Yet Emma asked Joe to call me.

It was a tremendous step forward.

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Autism – Questions

Posted on November 3, 2010 by | Leave a comment

How much does my child really understand?  What is she thinking?  What is it like to live in her body?  What sounds does she hear?  Does she know what she wants to say, but somewhere in between the thought and the attempt to verbalize it, the meaning becomes lost?  Does she believe she is saying something, only to have us respond with bewilderment?  What does she see?  What does she feel?

Many autistic children through various communication devices have allowed us to see and hear what they are thinking and feeling.  What they are able to tell us is both heartbreaking as well as miraculous.  Heartbreaking because they are aware of so much more than they appear, they know they are different, they know so much more than they are able to communicate, have complicated, busy inner lives, know anxiety, stress, depression, joy, boredom.

When Emma first spoke she said, Da-da, ah-done, and a series of other words and phrases typical of a baby learning to speak.  There was little to give us concern.  What was unusual was the language acquired did not serve as building blocks upon which more language was added.  At the age of 18 months Emma said – Chase me – we heard her say that for a few months, then it disappeared, never to be heard again.  There were many words acquired then seemingly forgotten.

In the field of autism, this is referred to as regressive autism.  Typically a child follows a neuro-typical child’s development, but at around 15 – 30 months begins to regress.  However we continue to see our eight-year old Emma “learn” things, only to forget them later.  Emma’s progress is not the steady progress one sees with neuro-typical children.  Hers is more of a hic-cup.  She paints with her brother, we document it, take photographs, exult in what amazing progress this means, only to have her never repeat the action.  Countless times my husband and I have recounted to one another something Emma has said or done only to see it never repeated.  The idea of a base of knowledge being constructed, the logical progression of a skill acquired, leading to another and another has not been Emma’s path.  We are teased into believing something has been learned only to see our expectation and hope thwarted.  We are left waiting.  Yet some other action will then occur – wholly unexpected – to raise our hopes anew.

Once when Emma was about three I took her to the dentist where it was found she had one tooth more on the bottom than is usual and one less than the norm on the top.

“Is this unusual?” I asked the dentist.

“Why shouldn’t it be?  Everything else about her is,” the dentist smiled.

I think of Emma’s progress and often despair.  Yet why should her progress follow the same path as a neuro-typical child’s?   Emma leap frogs where other children slowly, methodically climb.  Emma shows tremendous bursts of cognition followed by lethargy and meltdowns.  This is Emma’s way.  Hers is not the path of other children.  But it is a path, nevertheless.  One I feel privileged to accompany her on.

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Kisses

Posted on November 2, 2010 by | 2 comments

It was 1:48AM when Emma appeared at the side of the bed this morning.  Ever cheerful she said, “You have to ask Mommy.  Mommy?  Can I come get you in the other room?”

“But Emmy, it’s the middle of the night.”

“Good job asking Mommy!” Emma said brightly.  Then in a more subdued tone she said, “You have to wait til it’s light out.  Is it light out?  Yes!”

“Em, it’s not light out.  Look.  It’s dark.  It’s pitch black,” I said grumpily.  “You have to go back to your room and go to sleep.”

I felt Emma’s face near mine, her breath on my cheek as she bent down and kissed me.  “Kiss Mama,” she whispered.

“Ah, Emmy.  Thank you.  Come on.  Go pee and then you have to go back to your bed,” I said holding her body close to mine.

“You have to go pee,” Emma said as she ran off to the toilet.  As we made our way back to her bedroom she said, “You didn’t wake Nic.  You have to ask Mommy!”

“That’s right Em.  You didn’t wake Nic.  Thank you.  He needs to sleep.”  I held her hand as we walked toward her bedroom.

She hopped into bed, “Mommy!  Can I get you in the other room?”

“No, Em.  You have to go back to sleep in your own bed.  Remember?  You have to try to sleep now.”

Wide-awake and fully alert Emma sat up in bed.  “Mommy?  Mommy?”

“Yes Em?”

Emma leaned over and gave me another kiss.   “Emma kiss Mommy,” she said, proudly.

“Emmy, that is so nice.  I love when you give me kisses,” I stroked her head.  “Now come on, let’s lie down.”

“Mommy stay with Emma?” she asked wriggling down under the duvet.

“Yes, I’ll stay with you for a little while, but you have to go back to sleep.”

“The flushing carousel is closed,” Emma said sadly.  “The horses are sleeping.  Shhhh, you cannot go there.  You have to wait.”

“Are the horses sleeping, Em?”

“Yes.  The horses are sleeping now.  It’s broken,” she said.  Then she leaned over and kissed me again.  “Kiss Mommy.”

An hour and a half later and after many more kisses, Emma finally fell back to sleep, one leg draped over mine, an arm wrapped around my body, her face so close to mine I could feel every exhalation on my face.  As I lay there with her, I remembered how as a baby Emma was so uncomfortable with human touch.  It was as though it was physically painful for her to have skin-to-skin contact.  Now, Emma seeks out what once repelled her.

I read once years ago of a doctor who theorized all children, no matter their cognitive issues had to develop through a specific set of behaviors or would suffer the consequences later on.  For example if the child didn’t crawl, it would show in their development in other unexpected ways, learning disabilities, fine motor issues, etc.  He hypothesized the reverse was therefore true as well.  If a child no matter how delayed, was encouraged to go through a missed stage or came to it on their own, the child would show signs of positive cognitive development elsewhere.

Hope.  One must always hope.

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Trick or Treat?

Posted on November 1, 2010 by | Leave a comment

Halloween, wildly anticipated by our son Nic, was an occasion for dress up followed by cake for Emma.  “Have Halloween party and cupcake?” Emma asked yesterday afternoon.

“We aren’t having a party, but we will go out trick or treating and we can get you a cupcake while we’re out,” I said, knowing Emma wouldn’t care about the candy she acquired while trick or treating.

“Get cupcake?  Have cupcake now?” Emma said.

“In a little while, Emma.”

“Go trick or treating,” Emma said with a bit less enthusiasm.

For Emma it was all about the cupcake.  The cupcake, which would give her the opportunity to sing – Happy Birthday, regardless of the fact no one was celebrating a birthday.  Cupcakes = Birthdays = singing = joy, pure and simple.

Emma insisted on wearing her one-and-a-half-inch heeled, pointy-toed witch’s shoes, her black witch’s hat and completed the entire outfit by carrying a black broom.  “Mommy carry candy bag?”  Emma asked when we got outside.

“No Em.  This is for you.  You have to hold the bag and when we get to the first house you open the bag and say – Trick or Treat!” I coached.  We went through the same routine last year and the year before that.

“Trick or treat!” Emma repeated happily while Nic rolled his eyes.

“Mom, she doesn’t even care about the candy,” Nic said in a tone of resigned disbelief.

“I know Nic,” I said.

As we made our way out to join the quickly gathering crowds in Chelsea, Emma ran ahead.  Her head down, witch’s hat with its purple band jutting upward, her little heels clicking as she went.  “Em!  Em!  Wait!” One of us would periodically yell.

It was cold last night.  But Emma seemed impervious to the chill.  She accompanied us for the 20 blocks we roamed, up and down, back and forth, without complaint.  We stopped along the way to buy her a cupcake, where one of the customers standing in line upon seeing us, was heard to say, “This is what I love about New York City – the people have such commitment!”

We attempted to teach Emma to say Trick or Treat and either take a piece of candy from the bowl being offered or open her bag so that the offerings could be dropped inside.  She never really got either action down and by the end of the night I stopped trying to coach her.  She was content to walk along with us, watching Nic dart in and out, filling his bag.

Nicky!  Nicky L!” Emma occasionally shouted when she lost sight of him.  By the time we returned home, Emma struggled out of her witch’s costume, replacing it with one of her many princess dresses, where upon she dug into her cupcake with relish.

“Yum, yum!”  Emma said, smiling broadly, her face covered in icing.

Halloween 2010 – Emma, Richard & Nic

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Halloween

Posted on October 29, 2010 by | 1 comment

“Which one, Em?  The witch’s shoes or your Uggs?” I said, holding up her black Uggs.

“This one,” Emma said pointing to the black, pointy-toed shoes with large brass buckles I bought for her from the costume shop a month ago.

“She’s such a girl,” Richard whispered, smiling broadly.

Emma jammed her feet into the witchy shoes, looked down and said with a certain degree of satisfaction, “There!”

Then she hopped on her scooter and whipped around our living room.

Emma on her scooter in costume

Last year for Halloween, Emma wanted to be a witch as well.  This year, however, she said matter-of-factly, “Pretty Witch.”

And a pretty witch she is.

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Flash Cards

Posted on October 28, 2010 by | Leave a comment

“Four, three, two, one,” Emma said, in answer to my request she brush her teeth in preparation for bedtime last night.

This was different than the “one more minute” response we have become accustomed to.

“Don’t you make me come get you,” Emma said in her cheerfully mischievous voice.

After the teeth brushing routine – a compilation of various techniques and quirks from all of us:  flossing first – Richard’s contribution, brushing front and inside gums first, then teeth – mine, ending with brushing the tongue – Joe’s, concluding with a mouthful of fluoride, swish, swish and then spit – Emma’s dentist.  Nightgown donned, Emma raced around the house on her scooter, until I interrupted her with, “Let’s do some work, Em!”

Emma ran over to the couch where I prepared her flash cards.  These were sent home to her last week and have twenty or more sight words written in black marker on pink index cards.  Words such as “huff”, “puff”, “blow”, “straw”, “stick”, “brick”, “pig”, “house”, “down”, words taken from The Three Little Pigs, which is being studied in Emma’s class.  A week ago I laid out three random cards and said, “Emma, pick out the word, “pig”.  Immediately she picked up the index card with the word “pig” on it.  I continued to go through all of the index cards, with no hesitation on Emma’s part.  Her accuracy was close to 100%.  I then increased the number of cards displayed to four, then five, then six.  By six, Emma was making more mistakes, seemed distracted and so I reduced the field back to five.  Challenging for Emma, but still extremely accurate if she could be convinced to take the time to look and not stare out the window while idly jabbing her finger in the general direction of the table.

“Take your time, Em,” I encouraged.  “Look at the word.  Which one is the word “blow”? I asked.

Emma leaned over and blew the index card with the word “blow” written on it.  Then she looked at me and laughed.

I pointed to the card with “house”.  “What does that say?” I asked.

Emma stared at the cards lying on the table and sucked her thumb.  She looked away, staring out the window.

“Hey Em.  What does that say?” I asked again.

No response.

“Can you pick up the card that says, “house”? I asked.

Immediately Emma reached over and chose the correct card.

As with so many things regarding Emma, one is left with a feeling of bewilderment, curiosity mixed with wonder.  Emma, who still cannot articulate the words in the song “Twinkle, Twinkle, Little Star”, will chose the word “brick” when asked to.  Emma who appears uninterested in any stories remotely age appropriate, who continues to struggle and squirm when asked to attend to any one thing for more than ten minutes will sit singing song after song for hours.  She will look at her pile of over one hundred photographs and knows, almost instantly when one is missing.  Emma, whose memory for events and people in her life continues to astound us and yet is not able to identify the number one when asked to.

This is Emma.

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The Shower

Posted on October 26, 2010 by | Leave a comment

This morning I told Emma she had to take a shower and wash her hair.

“One more minute,” came the response.  This is the standard response to almost everything asked of her.

“Okay.  One more minute,” I said.

“Don’t you make me come get you,” Emma said with a sly grin, the pronoun confusion in full swing.

“Oh I’m going to come get you!  I’m going to come get you right now!” I said, pulling her legs as she shrieked with laughter and flailed about.

Once in the bathroom, Emma turned on the shower, undressed and stepped in.  “Ewwww!  Too cold!  You have to wait,” she said as she retreated to the safety of the room.  Tentatively she put her hand in to test the water.  “Nice and warm,” she announced before stepping into the shower.

“Okay, Em.  Remember you have to take the shampoo bottle and open the top.”  As I spoke, reminding her of what the steps were, she did as I said.  She put shampoo on her head and stood still.  “You have to rub the shampoo in.  Remember?   You have to wash your hair,” I reminded her.

“You have to wash your hair,” Emma repeated.

With a little help, Emma managed to wash her hair.

“Towel!  I need a towel!” Emma said, using the correct pronoun.

“Here you are!” I said, offering her a washcloth, which she held over her eyes.  “You need to rinse your hair, Em.  You have to get all the soap out.”

“You need to rinse,” Emma repeated.

I then walked her through washing her body with soap, naming each body part, reminding her she needed to rinse the soap off.  A few weeks ago I received a phone call in the middle of our shower routine and when I returned Emma was standing in the shower covered with soap.  When she saw me she turned the water off and said, “Shower all done!”

“No Em!  You need to rinse the soap off,” to which she took the bar of soap and put it under the water spray – washing it off.  “Your body, Em.  You need to rinse the soap off of your body,” I corrected myself.

Once out of the shower, unless reminded Emma will simply get dressed or more likely, run to our bed where she will snuggle under the sheets, soaking wet.  “You have to dry off, Em.  Remember?”

Again I name all her body parts.   Upon hearing them, she dutifully dries each part and then runs to our bed, laughing.

“Emma washed your hair,” Emma announced when I joined her in our bedroom.

“Yes, Em.  You did a terrific job washing your hair,” I answered.

“Emma wash your hair again?” Emma said with a grin.  Without waiting for an answer she shouted, “No!  You cannot wash your hair again.  You already took a shower!”

This is Emma’s idea of hilarity.  And it is pretty funny watching her scream with laughter at the very idea of going back into the shower.

That’s our Emma.

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A Balanced View

Posted on October 25, 2010 by | 6 comments

When writing about Emma I am often struck by how other people view what we write.   “She sounds just like my four year old,” is something I have heard more than once.   We walk a fine line of not wanting to exaggerate the tiny steps of progress she makes, with the desire to write honestly about her life as we witness and interact with it.

For example if I write of how Emma is now sleeping through the night, only very occasionally wetting her bed, hasn’t worn a diaper since June 9th, 2010, is verbally more precocious, is displaying wonderful eye contact more and more frequently, seems to understand more, has an increased interest in being read to, tolerates more situations with increasing ease, it sounds almost miraculous.  And in many ways it is.

If I then give a detailed description of a day spent with her – such as yesterday when we went not only to the Bronx zoo, but to a nearby playground afterward – describe how she never once acknowledged the hundreds of children around her, much less exchanged eye contact or words, all the while carrying a two foot long stick which she refused to release even when on the monkey bars, her utterances, her overall deficiencies appear glaring.  If I insist then on adding how she attempted to sit opposite us on the subway, made odd whooping noises and whenever the doors to the subway closed with the accompanying ding-dong sound, Emma cheerfully sang, “Gank – You!” replicating the exact tone of the warning sound indicating all passengers needed to get inside the subway before it left the station, one is left with a very different sense of who she is.  Yet both would be accurate and correct.

A balanced view is the goal of this blog.  Neither an exaggerated version of her abilities nor deficits is what we endeavor.  The trouble is, it isn’t always easy.  Given a mood, a less than ideal night with too little sleep, work stresses, marital stresses, all effect how Emma comes across on paper.  There’s no way to really portray her with all her idiosyncrasies without it seeming somehow off.  I read past posts and barely recognize her or us, for that matter.  The edges are smoothed the disagreements remain just that and not the melodramas they can feel to those intimately involved.  Perhaps it is a positive thing.  In the end we are the stories we tell, we become the edited versions we choose or in this case we choose to tell for Emma.  Who knows what she would say, were she able to.  Perhaps one day she will be able to do so and will choose to.  My guess is it will be a very different story than the one we are telling.

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Books

Posted on October 21, 2010 by | Leave a comment

When Emma was very young, she barely tolerated being read to.  Unlike her older neuro-typical brother, Nic, who requested certain favorites over and over again, only to be delighted when a new book was presented, Emma would take hold of a select few and flip rapidly through the pages.  It became apparent her interest was less about the book and more about the action of holding it and turning its pages.  During those early years, before we were given her diagnosis I remained baffled by her behavior.
We are a reading family.  Our home is filled with books on a wide variety of topics, fiction, non-fiction, poetry, memoirs, biography, it’s all there.  When Nic was born I looked forward to introducing him to the books, which captured my attention and imagination when I was a child.  We read to Nic every night and often still do.

When Emma was born, out came the now tattered edition of The Hungry Caterpillar, Brown Bear, Brown Bear, What do you see? Good Night Moon, its spine broken, held together with tape and hundreds of others.  But Emma would squirm in my lap, push the book away, whimper and struggle until eventually I let her go.  I was tenacious though and regularly took the children to Books of Wonder, the local bookstore where Nic promptly sat on the floor amidst a growing pile of books.

“Can I have this one?” he asked.  “And this one?”

Emma went to the bookshelves, scanned them and upon seeing a book she was familiar with would pull it down.  I don’t remember her ever pulling down a book we didn’t already own until she began going to preschool.  Then we would purchase one or maybe two books she knew from school and she would flip through the pages like some sort of speed-reader.  It was the same when she looked at photographs.  Not really seeing them, there was no studying the photo or in the case of a book, the illustration.  She methodically turned each page, seemingly without seeing.

Over the years Emma has shown a greater tolerance for the books we continue to try and entice her with.  She has learned to sit patiently with me while I read to her.  Sometimes she appears to even enjoy it.  When she likes a book after I have finished reading it to her, she will grab the book from me and say, “Emma’s turn!”

Over the past six months I’ve noticed Emma is much more curious about the books I proffer.  Now at night I typically choose one book Emma knows and has requested, at the moment her two favorites are Olivia Forms a Band and The Three Little Rigs, and several she’s never seen or expressed any desire in sitting through.  Within the past month I have read, The Cat in the Hat, McElligot’s Pool, Dr. Seuss’s Sleep Book, If I Ran The Zoo, Olivia Saves the Circus, Olivia and the Missing Toy, The Giving Tree, the list goes on.

When I was pregnant with Emma, I fantasized I would read to her and Nic at night the books I remember being read to by my mother.  Every Sunday night my father would take my brothers to the living room where he would read King Arthur and the Knights of the Round Table, The Hobbit, among others.  My fathers’ booming voice would make its way down the hallway into my parent’s room where my sister and I were lying on either side of my mother.  We would roll our eyes at each other and occasionally my sister would request that she be allowed to sit with our brothers and listen to whatever my father was reading.  Meanwhile my mother read:  Mary Poppins, Winnie the Pooh, and later books such as My Family and Other Animals.  I can still remember my heartbreak when a book came to a close. A few times I even cried when a book came to its conclusion because I could not stand it had come to an end.

That Emma is showing pleasure in being read to, fills me with joy.

Just one more small step forward…

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My Emma

Posted on October 19, 2010 by | Leave a comment

A mother with her little girl, about Emma’s age stand patiently in line for the bathroom on our flight to Denver.  Methodically her mother braids her daughter’s long, blonde hair, then places her arms around the child’s upper body.  Her daughter puts her own hands on top of her mother’s, tilts her head up and smiles at her mother.

I marvel at how such a simple gesture, probably gone unnoticed by either of them, is utterly foreign to me.  I long for such a simple exchange with Emma.  I get them, but they are rare.  When they do come, seemingly out of nowhere, I am usually caught off guard and brought to tears, tears of relief and joy and something else, something closer to grief.

I think of Emma, standing in a similar line, on this same airplane route flying from New York’s La Guardia to Denver several years ago.

“Potty?” Emma says, anxiety rising in her voice.

“Yes, we have to wait in line,” I say.

“Potty?!” Emma says again, her voice slightly louder, the anxiety has crept up a notch.

I count the number of people in front of us, there are four, but one’s a couple so maybe they don’t both have to go, perhaps they’re just keeping each other company I reason.  Five minutes, tops, I think.

“We have to wait,” I say again, grim determination steeling into my tone.  I take a breath when another person vacates the only bathroom, reducing our line to three.  I look behind me at the two bathrooms at the back of the plane, the line snakes up the aisle, at least half a dozen are waiting.

“Have to use the potty,” Emma says now close to tears.

The woman in front of us turns to look at the whining child, my child.  “She can go ahead of us,” she says kindly.

“No she can’t,” her husband, counters.

“Scott!  Of course she can.  Go on, go ahead of us,” she glares at her husband who is shaking his head in annoyance.

Grateful, I thank them, ignore the husband’s irritated glare and go to the head of the line, pulling Emma ahead of me.   Anxiety, stress – will she wet her pants?  Did I bring enough pairs of underwear and a full change of clothing if she does  Embarrassment, humiliation… it’s all there.

I return my thoughts to the little girl with her mother behind me, looking for any sign that she might be uncomfortable.  There are none – mother and daughter, utterly relaxed standing close to one another, as though this were the most natural thing in the world.

“Compare and despair,” a friend of mine once said to me.  And it is true, though I cannot always help myself.  Whenever we are with friends with small children, whenever we are at a playground, any time I see a child I find myself asking – did Emma do that when she was that age?  Did Emma ever to do that? And then the inevitable follow up question, which serves to slam the door shut on all further questions – will she ever do that?

Who knows?

I am away for the next four days, yet my children and husband are here with me, everywhere I go.  I find there’s great solace in that.

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A Little Gratitude

Posted on October 15, 2010 by | Leave a comment

Emma stealthily crept into Nic’s bed last night, without waking him and was found by Richard when he went to wake Nic at just minutes before 7:00AM this morning.

“Good job waiting!” Emma said as she bounded into our bedroom and snuggled under the sheets.

Richard, having spent well over an hour with her in the middle of the night getting her back to sleep, was in the other room.  I was getting dressed and said nothing.  I was at a loss for words.  She sounded so proud of herself.  Did she not understand that in fact, she had not slept in her own bed, had gotten up at just past midnight to come into our bedroom where she woke both of us up?  Did she no longer remember Richard went back to her bedroom with her and stayed there until after 1:00AM, making sure she was asleep before returning to our bed?  At some point after Richard left her she must have woken up once more and snuck into Nic’s bed, being sure not to wake him.  After all we told her she mustn’t wake Nic.  Technically she did not wake him, but she didn’t stay in her own bed either.

The night before she was up screaming, “Mommy!  Mommy!  Come!  Mommy come!”  Heart-rending cries, unbearable, the guilt in not responding overwhelmed me.

“I’ll get her,” Richard said, grimly.

For the past couple of nights now, Richard has gone to her before her screams woke Nic, sitting with her for more than an hour in the middle of the night.  Trying to calm her, trying to get her to understand we need to sleep, she needs to sleep, she cannot wake us.  Yet, she does anyway.  It is easy to feel discouraged, despair even, but the truth is, she is making progress.  The 2:30AM wake-up calls are now occurring just after midnight.  She is not wetting her bed.  She is (until last night) staying in her own bed, after Richard returns her to it.

“Mommy!”  Emma cried.  Five years ago, I would have given anything to have her cry out for me.  I would have given anything for her to acknowledge me at all.  Now she does and I groan.  It is Richard who bears the brunt of these middle of the night pleas.  It is Richard who suffers the next day, trying to defog his brain enough to make sense of the work before him.  It is Richard who stumbles through the day, trying to maintain a placid demeanor, not giving in to the impatience, despair and fear that lurk on the edge of his thoughts.

I must get my work done and leave the studio early today so as to be home in time to greet Nic’s bus at 3:45PM this afternoon, allowing Richard to go out with friends who are in town.  It is the least I can do.  I sit here in my studio gazing out at the Chrysler Building, feeling immense gratitude, gratitude for having a husband who places his family first, who demonstrates his love for us on a daily basis.  I am incredibly fortunate.

I have the luxury of enough sleep and a mind clear enough this morning (thanks to my husband) that I am able to remind myself, Emma is progressing.  It’s two steps forward, one step back, but she is making progress.

I don’t know how people do this without an active participating partner.

I cannot imagine.

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