Tag Archives: autism children

Milestones

Posted on December 23, 2010 by | Leave a comment

Early this morning Emma climbed into our bed.  “Hi Mommy!”

“Em, it’s too early, you have to go back to bed,” I said.

“Okay.”

I listened to her make her way back to her bedroom.  When her bedroom door closed, I marveled at how just months ago, this would not have happened.  In the past, Emma would have refused to leave or screamed until one of us took her back to her bedroom where she would not have gone back to sleep or she would have left and begun screaming minutes later.  This morning, there was nothing but silence.  The silence accentuated by the thick layer of snow covering everything and which continues to fall as I write.

Later, when something crashed into one of the windows, causing the dogs to start barking downstairs, I tiptoed into Emma’s room.  She was in her bed, with her head on her stuffed green monster, Muzzy.  “Hi Mommy!”  she said.

“Hi Em!”

“Just you and me,” she said pointing to herself and then me.  “Just you and me in Emma’s bed.”

“Yes, I said, sitting on her bed.  “You and me” is something Emma has begun saying for a few months now.  It is another milestone.  She says it as she points to each person she is referring to.  While this may seem inconsequential, it represents an astonishing leap in cognition as well as tremendous developmental progress.  One of the telltale signs of autism – a lack of pointing – is something Emma is now beginning to do.

“Muzzy, teddy bear,” Emma said, pointing to her monster.

“You love your Muzzy, don’t you Em?”

“Yes,” she said.

And I love that Emma has taken to referring to her stuffed monster as “Muzzy, teddy bear.”  It’s such an apt description of what he is to her.  And like all things Emma, her choice in “teddy bears” is a bit unconventional.

Emma just came into the room where I am writing with her “twin”, an enormous doll I bought for her one Christmas.  I ordered it over the Internet and had to send a photo of Emma, with instructions on the correct eye, hair and skin color.  When the doll came, complete with Christmas party dress and faux fur stole, Emma looked at it and wandered off.  A pile of unwrapped presents remained under the Christmas tree abandoned.  Every Christmas we have attempted to entice Emma with a few things we think she might enjoy only to have her barely take notice of any of them.

“Look!  Doll!” Emma said  as she sat down with the stripped down doll in her arms.

“Oh Em, you have your doll with you.  What’s her name?” I asked.

After a pause Emma said, “Girl.”

Then she picked up some of her picture books and began “reading” to “girl”.

“Have Eddie come, get christmas presents?” Emma said while we were still in New York.

“We’ll be in Aspen for Christmas,” I told her.

“Open Christmas presents at Granma’s house,” Emma said.

“Yes!”

For Emma to show even a remote interest in opening any presents this Christmas will be a first.

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Our Tenth Anniversary

Posted on December 22, 2010 by | Leave a comment

Today is Richard and my tenth wedding anniversary.  For those of you who know how old our son, Nic is, it will not take long to calculate the years do not add up.  This is because, Nic, at 8 months old was at our wedding, wearing a little black velvet tuxedo, with his chubby cheeks and bald head, he was adorable.  Richard and I have never been ones to go the conventional route.

Richard planned a whole day of indulgences for us, today.  So last night we both went to sleep early as we knew we had to get Emma up and ready to meet her ski buddy, get Nic organized before going into town to begin our day together.  At around midnight both of us were woken by screams, emanating from Emma’s bedroom.  In the darkness Emma’s figure could be seen standing by the window looking north east onto the upper ditches of Red Mountain.

“Emmy, what’s going on?”

“I need help!”  she cried.

“Okay.  Come on.  Let’s sit on your bed.  It’s going to be okay,” I said, as Emma pulled at her ears.

“I need help!  Ears popping!” Emma screamed.

“Emma, it’s okay,” Richard said.

“Come on, baby, sit down next to me,” I instructed.  “Go like this,” I told her, demonstrating a yawn.

Emma watched me, as she always does when her ears hurt from the changing weather outside.  “It’s okay,” she said.  Then she held her nose and blew, causing her face to turn red.

“That’s not going to help, Emma.  That will only make it worse,” Richard said.

“Here.  Do this,” I said, demonstrating again.

After ten minutes or so of continuous cries for help, I told Richard to go back to bed and I stayed with Emma, trying to stay calm amidst her pleas for help.

I massaged her ears, pulling gently on them, hoping it would ease the pressure a little, all the while aware of the pressure in my own ears.  Emma is so incredibly sensitive to the sensations within her own body, and often they cause her great pain.  I looked out the window and saw the clouds, which have enveloped the valley these past few days were lifting.

“Mommy!  I need help!  You have to stop screaming,” Emma said tearfully.  “Belly go bang, bang.”

“Em do you have to throw up?”

“Yes, belly go bang bang,” she said running into the bathroom.  We sat together in the bathroom for awhile.  “Daisy!  You cannot hit.  I need a bandaid!  You have to wash it,” Emma scripted, taking a number of older conversations and putting them together in some sort of creative medley.

“Where does it hurt, Emmy?” I asked.

“Here,” she said rubbing her chest.  “I want a bandaid!  I want to get into the pool. It’s broken.”

I stroked her head and brought a bowl from the kitchen to place next to her bed.  I was able to get her back into her bed where she lay, occasionally whimpering.   After a few hours she was able to fall asleep with me by her side.

When she woke up this morning, I said, “Let’s go see if Daddy’s awake.”

“Okay,” she said.

Upon seeing me, Richard said, “Happy Anniversary Honey.”

We laughed as Emma leapt into bed beside us.  “No banging!” Emma said.

“Do you still feel sick?” I asked.  “Do you feel okay, Em?”

“Yes,” Emma said pulling the sheets over her head.

Together we can do what neither one of us would want to do alone.

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The Aspen Carousel

Posted on December 21, 2010 by | 1 comment

While there is no actual carousel in Aspen, Emma has devised ways to bring the concept here nevertheless.  As I write this, Emma is sitting downstairs where my mother has set up a toy carousel on a little table next to the Christmas tree.  It has lights and plays music, which Emma sings to as she knows all the songs.  The horses and animals move around as the lights flash and the music plays.  Prior to our leaving for Aspen Emma said, “Go to Aspen, go downstairs for carousel.”

“That’s right Em.  Granma keeps the carousel downstairs.  We’ll need to bring it upstairs to the living room,” I said.

“Get Aspen carousel.  Play on Granma’s carousel!” she said.

Now sitting in front of it, Emma said, “No Emma cannot sit on the carousel!  It’s too small for Emma.  Carousel for babies.”

“It’s too small for even a baby, Em.  It’s a doll’s carousel,” I said earlier.

“It’s too small,” Emma agreed.

“Carousel all done,” Emma could be heard saying just now as the music on the little toy carousel abruptly ended.

The other “carousel” Emma loves is at the ARC.  For those who have visited the Aspen Recreation Center, you will know there is no carousel.  But Emma has created her own by sitting on a ball and allowing the current of the “lazy river” (a waterway with a current propelling the body around and around) to push her along as she sings “carousel” songs.  “Go to the ARC?  Go on the carousel?” she asked a few years ago.

Utterly confused we corrected her, “But Em, there is no carousel at the ARC.  The carousel is in New York, we have to wait til we get back home.”

“Go on the Aspen carousel,” Emma insisted.

“We can try to find one, but I think we’ll have to drive a long way.”

“Aspen carousel,” Emma said matter-of-factly.

“Well let’s see if we can find one nearby,” we said in an attempt to placate her.

Eventually one of us figured out the connection when Emma said, “Go to carousel in indoor pool in Aspen.”

“You mean at the Rec Center?”

“Yes,” Emma confirmed, nodding her head.

“She must mean the lazy river,” one of us said.

The next time we came to Aspen, sure enough Emma raced over to the lazy river and, while balancing herself on a ball floated happily around and around while singing a medley of “carousel” tunes.

We have learned Emma is rarely wrong about such things.  If she says there is a carousel at the Rec Center, then there must be something that to her represents a carousel.

There is one more carousel Emma likes “going on”.  She runs around the kitchen island and sings, usually with the dogs joining in, which makes her run all the faster as she remains terrified of them.  It is a catch-22, the faster she runs to get away from the dogs, the more they think it’s a tremendous new game.  After a few laps, Emma will speed off to the safety of the upstairs where she knows the dogs will not follow her.  Carousel derailed.

Last night during dinner, every time someone at the dinner table got up, Emma would scoot into their chair saying cheerfully, “Now sit in Uncle Victor’s chair!” or “Now sit in Granma’s chair!”  It was a kind of impromptu musical chairs, which Emma devised regardless that no one else was in on the game nor was there music playing.  While this was not another “carousel” game, at least Emma didn’t call it one, it did have similarities.  Music, movement and silliness are Emma’s favorite things.  It’s no wonder she loves coming out here.  There are such endless possibilities.

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All Together

Posted on December 20, 2010 by | Leave a comment

Richard, Nic and Emma finally arrived in Aspen after a series of mishaps Thursday evening.  Emma saw me first and ran, as though heading for my arms, but at the last second, veered away, saying, “Hi Mommy!  It’s Mommy!”  and jumped up and down, pointing at me from about five feet away.

I caught her and said, “Hi Em!  Remember, arms around and squeeze!”  Which she did as I kissed both her cheeks.  I have been working with her on the art of hugging family members and though she hasn’t got it down yet, she at least understands that if you put your arms around the other person and squeeze, that will pass for an acceptable hug.  It’s a start, anyway.

Richard and Nic, on the other hand, returned my embraces easily and without hesitation.   This is my family and I am ecstatic to have them here with me through the holidays.

While we are here, Em is skiing with a buddy provided by Challenge Aspen.  (Except for today when it is so messy out with rain, slush & snow even Emma seemed less than enthusiastic.)  “Look!  It’s raining!  We cannot go skiing when it’s raining,” she said upon waking up this morning.  “That’s just silly!”  she added, pointing out the window at the rain.  And indeed, it did seem to be a bad idea, though there were the intrepid few, who defied all logic and were on the slopes, my brother and his wife being two of them.

I am relieved Emma was not among them, however, as the patches of sheer ice, mixed with the slush caused by the milder temperatures and rain, made for some interesting driving along our road.  I can only imagine what the skiing was like.

“Would you like me to read to you?” I asked Emma earlier this morning.

“Yes,” she said, sitting between my legs on the couch usually taken over by the dogs.  Emma pulled a blanket over us and leaned her head back against my chest.  I have been reading Balto, the Siberian husky whose statue forever memorializes him in New York City’s Central Park.  Emma, despite her fear of dogs loves the statue in Central Park and often climbs on it, as the photo below shows.

Emma seemed to enjoy the story and listened quietly as I read the last twenty pages to her.  When we finished the story, she looked out the window and said, “No, not going to go skiing!”  Go swimming at the ARC.  Go jump off the diving board into the cold water!”

“Yeah.  Okay.  That sounds like a good plan,” I said.

“Go swimming now,” Emma said.  Upon seeing my hesitation, she said, “You have to ask Mommy.  Mommy!  Can I go swimming at the ARC?”

“Em, you’ll go later, it’s not open yet.”

“You have to wait, it’s broken,” she said, looking at me to see if she’d gotten it right.

“No, it’s not broken, it’s just not open yet.  It’s too early,” I explained.

“It’s too early,” she said.  Then she peered out the window at the morning light and said, “You have to wait til it’s light out.”

“No, Em.  It’s light out, see?  We can see the mountains, but it’s too early for the pool to be open.  People are just waking up and having breakfast…”

“Later,” Emma said, clearly not interested in my long-winded explanation.

“Yes.  Just a little later.”

“One minute,” Em said.

“More than one minute,” I said, wondering if I should use the opportunity to bring over a clock and discuss the concept of time.

“Later,” Emma said with finality.

“Yes.”

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The Next 32 Hours

Posted on December 15, 2010 by | 1 comment

To say I am counting the hours until my family’s arrival would not be an exaggeration,  32 hours, weather permitting.  And during those 32 hours I will have opened my store, launched my e-commerce web site: www.arianezurcher.com, worked an eight hour shift and gone to see my friend and inspiration to all of us, Amanda Boxtel demonstrate Berkeley Bionics eLegs at the Aspen Club this evening.

Richard will be equally busy, going to Emma’s school for her parent/teacher conference, working, packing, going to Nic’s school Winter Concert where he will play “Lean on Me” on his clarinet (!) making sure Merlin is cared for while we are away, before getting to the airport and onto the airplane.  Flying with Nic and Emma is always stressful and anxiety producing even though Emma is one of the world’s best travelers.  It is more the mental gymnastics one inevitably goes through before the fact which causes the most worry – What if she has to pee and the plane is stuck on the runway in some endless and unforeseen delay?  What if she freaks out for some unspecified reason?  What if her favorite DVD doesn’t play properly?  What if, once in Denver, the plane to Aspen is delayed or worse, cancelled?  What if…

I have flown with both children a number of times on my own and it’s always nerve wracking.  The good news is, even with some substantial delays and mishaps, both Nic and Emma are terrific travelers.  Emma loves when the plane begins zooming along the runway and in the past would race her legs up and down as though she were running, propelling the plane forward as she laughed and made buzzing noises.  I haven’t seen her do that in over a year now, but it was hilarious when she use to.  Now, more likely, she will simply gaze out the window with a little content smile and occasionally hum.  She knows she will have her Cokie or as her head teacher at school writes – Coqui – which I rather like, giving the tattered blanket a certain, je ne ce quoi.  Emma has been talking about the fact she will have full access to Cokie on the airplane for over a month now.  “Take Cokie on the airplane,” she has said more than a few times.

“Yes, Em.  You’ll have Cokie with you.”

“Have Cokie on the airplane,” Emma will repeat as if confirming an important appointment.

“Yes,” we respond.

“Good!  Take Cokie on the airplane.”  Then she will nod her head and grin.

Both Emma and Nic have been looking forward to coming out to Aspen for a while now.  Nic cannot wait to see his beloved Granma and her dogs and Emma can’t wait to see her Granma, go skiing with her Uncle Victor and Aunt Susan and go swimming at the ARC (Aspen Recreation Center) after skiing.  I cannot wait to see both children and my husband tomorrow afternoon and have not thought much beyond catching sight of them and just hugging all of them.

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Priorities

Posted on December 14, 2010 by | Leave a comment

I have been away on business these past few days, which means I am away from my family and I miss them terribly.

This morning I received an email from Emma’s school saying she spit on the bus again, despite the fact she knows she will not have any cupcakes when she comes home and now will have limited access to her blanket, if this continues. I am not in New York to help deal with the situation, and even if I were, I doubt my presence would have much impact on her behavior. Knowing Richard is doing all he can to cope with this as well as working, packing for his and the children’s fast approaching departure to join me out here, going to Emma’s parent/teacher conference, Nic’s school concert where he is playing the clarinet, and all the other things he needs to do and get done before leaving this Thursday, I am feeling terrible that I’m out here worrying about the positioning of our store mirrors and whether our sign will be hung by tomorrow, when we hope to open our doors to the public.

Priorities. We all have to prioritize. We juggle as best we can. But it is our families, our friends, the people in our lives who are most important. All of this is trite, I know, but when I am told of Emma’s behavior, I remind myself of these things, because it can feel so terrible. Richard and I will figure out a way to ensure she stop spitting, it may take some time, but we will be able to rid her of this behavior eventually, just as we have worked with her on countless other inappropriate behaviors. Perspective and priorities..

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Disconsolate

Posted on December 13, 2010 by | Leave a comment

Yesterday Emma’s beloved gymnastics was cancelled at the last minute. This is unacceptable to Emma. First of all she cannot understand the reasons for such a thing to occur. That the instructor called, just minutes before they were to leave, was baffling. What could possibly have come up? Then the reasons for the cancellation – that they didn’t have enough people to help with the birthday party which was planned and going on at the same time as Emma’s lesson was not something she (or quite honestly I) could comprehend. Emma was disconsolate. Richard told me it took a long time before he could go anywhere else with her, her sadness was so great.
When Emma is disappointed, it is not the disappointment of a neuro-typical child. It is unlike anything I have ever witnessed. It is as though the world were ending – and perhaps to Emma it is. To live in a world where there is so little chatter, in your head or externally, is to live in a kind of silence I cannot know.
Before I left for Aspen I was reading a children’s version of the story about Helen Keller to Emma. It is called “Helen Keller A Light For the Blind” by Kathleen V. Kudlinski. When I began reading it to Emma, I thought it too advanced for her, but on the third day of reading it I brought out a different book, a picture book. Emma was snuggled into her bed as usual, but upon seeing the picture book shook her head. “No,” she said.
“Oh! Do you want me to read Hellen Keller or this book?” I asked holding it up.
“Helen Keller”, Emma said to my surprise.
“Okay. Good idea,” I said, putting the picture book away.
I cannot know what Emma likes about Helen Keller, but I know as I read it, there are a great many similarities between Helen and Emma, many more than I would have initially assumed. Up until she was 18 months old, Helen Keller lived and grew as any normally developing child and though Emma showed signs of her autism from the beginning, they became much more pronounced between 13- 18 months of age. Helen Keller became increasingly frustrated with the sudden dark and silent world which enveloped her. She could not understand it or anyone around her and it frightened her. Eventually her fears manifested as frustration and anger. When Annie Sullivan came to live with the Kellers, she was kind, but strict and forced Helen to do a great many things she didn’t want to.
As I have read about Helen Keller to Emma I can tell she’s listening by the way she cranes her head to look at the page and even more so, when there is a page of illustrations. One evening she even reached her hand out to touch the illustration of Helen Keller feeling water running through her hand. I wondered if Emma recognized something in the story and identified with her. Helen was a terrified angry child until she was able to begin to “see” the world with Annie Sullivan’s help. Does Emma identify with the terror and anger? I can’t know.
But when Emma’s gymnastics class was inexplicable canceled, something she’d been looking forward to all week, the only way she could express her devastation was by screaming and crying.
By the time I spoke with Richard, it was already the evening on the east coast and Emma was fine, having gone to her next favorite thing – The Snake Bite Museum. (Which is what she calls the American Natural History Museum because on the fourth floor there is a glass case with a boy sitting against a log who has been bitten by a rattle snake. The display helpfully advises how to avoid being bitten by a snake.)
When I spoke to Richard, I could hear Emma singing cheerfully in the background.
All was well once more.

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The Phone Call

Posted on December 11, 2010 by | Leave a comment

I hadn’t spoken to Emma in two days as I’ve been away on business. It’s always difficult traveling, leaving Richard, Nic and Emma behind. But it’s particularly tough not being around Emma as her phone skills are lacking. With Nic I can talk to him, ask him how his day was and feel a modicum of connection. But with Emma it’s more elusive. I called the house a little while ago, having not changed the time zone on my laptop, forgetting it was just 7:00AM on the east coast and Emma may still be asleep what with her new “sleeping til it’s light out” schedule and woke everyone up. I was hoping to exchange a few words with Em, though really would have felt happy to hear her sweet voice, but instead heard her murmur something in the background as Richard said, “Why are you calling so early?” in a groggy tone.
“Oh no!” I said. “What time is it?”
“It’s just 7:00,” Richard answered. “I’ll talk to you later.” There are some things years of marriage and no amount of love can penetrate – sleep.
An hour later Richard texted me saying everyone was up, so I called again.
“Hi!” Richard answered the phone. In the background I could hear Emma’s baby doll humming to the tune of “Row, row, row your boat.”
“Hi!” I said. “What’s Emmy doing?”
“She’s giving her baby doll a bath.”
“Where?”
“In the kitchen sink,” Richard said. I could hear the baby doll humming again, indicating Emma had just pressed her belly button to make her do so.
“Really?”
“Yeah, she washed her hair with shampoo and rinsed it out. I wonder how long it can stay in the water before it short curcuits,” Richard said.
“I don’t know. But that’s pretty great.”
“Yeah, she played with it all last night too. Now she’s put a towel on the floor and is drying it off. Hey Em! Come say hi to Mommy!”
I could hear Emma talking to her baby doll and then her footsteps running toward the phone. “Hi Mommy!” she said, still not quite into the phone.
“Hi Em!”
“Mommy’s staying at Granma’s house,” Emma said sadly.
“Yeah. I’m at Granma’s house. How are you?”
“Bye Mommy!” Her voice was heard to say as she sped off. I could hear the baby doll launch into another rendition of Row, row, row your boat in the background.
“Hey,” Richard said.
“Oh, I barely got to speak to her,” I said.
“Yeah, well you never know how long she’ll talk,” he said.
“I know. You have to get everything in quickly.”
For today, my brief conversation will have to do. Knowing Emma is playing with her doll makes me happy. Richard is hosting a sleep over with one of Nic’s friends, brave man that he is. Tomorrow Emma takes her gymnastics class and I will wait to hear how everything went.

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Bullying

Posted on December 10, 2010 by | 3 comments

As I was waiting for my airplane to take off at La Guardia airport yesterday, I heard a woman on the news discussing the problems of bullying at school. She was saying the prevalence of bullying was greater with autistic children. I couldn’t hear much more of what she was saying as the loud speaker came on to announce a flight’s impending departure, but it reminded me of the few times I’ve witnessed Emma being teased.
The worst was at the ARC in Aspen, Colorado where she was paddling around with a plastic ball in the swimming pool. I was watching her from a distance and saw two older boys swim toward her. There was something about the way they were looking over at each other, laughing and talking to each other and then looking at her that made me stand up. They began to circle her like sharks and I heard one of them say, “Hey girlie!” Hey! Can we have your ball?” They both began howling with laughter.
Emma, as is her way, ignored them and continued to try and sit on the ball. “Hey! Hey girlie, over here!” the other boy called out. And then he said something I couldn’t understand because at that moment Emma let out one of her odd whooping noises.
The boys began laughing. “What did you say? We couldn’t hear you!” They shouted, doubled over at the hilarity of it all.
“And she couldn’t hear you,” I said to the boys who looked at me with startled expressions.
I was standing directly over them by this time. “Why don’t you tell me what it is you want to say to my daughter and I’ll see if she’s interested in speaking with you,” I said.
“Oh, no, we weren’t talking to her,” the one boy said, putting some distance between himself and Emma.
“Oh, really, because I heard you calling out to her,” I said.
“Yeah, we just wanted to play with that ball she has,” the other boy said, looking at his friend and laughing.
“Why don’t you ask the life guard for another one,” I said. “And from now on, if you want to say anything to her, you can run it by me first,” I added. “I’ll be right here.”
The boys said nothing and about a minute later got out of the pool.
I remember wondering how often things like that happened, when I’m not there to witness it. Fortunately, Emma is never by herself in public, so the opportunities for this kind of teasing are almost non-existent. But what about the bus? I know she’s been teased on the bus, she’s told me as much. But how can we know what really takes place when one of us isn’t with her? We can’t. Emma has given us clues over the years, by repeating things said to her, capturing the tone and accent of the speaker perfectly so that we can often figure out who was saying whatever it was that was hurtful or upsetting.
I remember the bus driver last summer who made her sit in the bus outside her school for over an hour and when she tried to leave began yelling at her. We reported him, but only after he’d spent at least one morning being abusive, and we have no idea to what extent.
There have been only a couple of moments when a child has been cruel to Emma that we’ve witnessed. More often children have been kind or tried to help her, only to have me hovering nearby, uncertain as to their intentions at first. Only once I know she’s being treated kindly do I back off.
It would be lovely to think bullying and teasing would one day be a thing of the past. I’ve never heard anyone come up with anything remotely resembling a solution. Until adults take into account their own poor behavior it seems to me bullying will continue unabated.

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“Spitting? Nooooo! You cannot spit!”

Posted on December 8, 2010 by | Leave a comment

“That’s just gross,” Joe said, when we told him about Emma spitting at her bus driver, who was, presumably trying to drive the bus. Or perhaps Emma spit in her direction and not actually on her, in any event, it was upsetting to all of us and I’m sure even more so to the poor bus driver.
We decided an all out assault was in order. Joe was contacted, Richard and I emailed Emma’s school, and a plan was formulated. Emma would not get a cupcake when she returned home from school, it was decided. By the time Emma arrived home, the cupcakes had been stowed away in an undisclosed place and all of us were prepared for the melt down we assumed would be forth coming. Except there was no tantruming, in fact, Emma, though not happy with our pronouncement she was not getting a cupcake for dessert, did not do much more than look sad, and peer into the frig, saying, “Cupcakes all gone.” Then she nodded her head and pursed her lips.
“If you don’t spit, you can have a cupcake tomorrow when you come home from school,” we told her.
“It’s okay. Cupcake tomorrow,” she said.
This morning, Emma didn’t even ask for a cupcake. Upon seeing the empty space on the shelf in the frig they normally occupy, she nodded her head and said to no one in particular, “Cupcake? Noooooo! You cannot spit.”
When I took her down to the bus, I spoke again to the matron and bus driver, emphasizing how they should say in a stern, but calm voice, “No spitting,” when and if she did so. I told them we had spoken to Emma and she understood there would be consequences. I asked them to call me immediately if she spit. I am pleased to report, no call came. Later this afternoon, we received an email from her school saying not only had Emma not spit on the bus, where she was given loud cheers and high fives upon drop off, but she also did not spit at school in the class room.
We will continue to work on this with her, but for this afternoon, she gets a cupcake!

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Spitting

Posted on December 7, 2010 by | Leave a comment

As I put Emma on the bus this morning, the bus matron said, “No spitting today!”
“Has she spit?” I asked.
“Yes! Yesterday, the whole ride she was spitting,” both the driver and matron confirmed.
“Emma,” I said standing in the stairwell of the bus, “you may NOT spit. Do you understand?”
“Okay,” Emma said softly.
“If she spits again, let me know right away,” I told the driver. “And if you’re right near her when she spits, put your hand up in a halt position, like this,” I said demonstrating, “Then say, “No! No spitting!” in a stern, but calm voice.
“Alright,” the matron said. “Thank you so much.”
As I went into our building I wondered if I would be receiving a phone call in the next 15 minutes. Sure enough, 10 minutes later my phone rang.
“She just spit at the driver,” the matron announced. “Here, she can hear you.”
“Emma! This is NOT okay. You cannot spit. Do you understand me?”
“Okay,” Emma whispered.
I hung up the phone and sat down. Emma has been doing exceptionally well at home. She is sleeping in her own bed, going to the bathroom in the middle of the night when she needs to, going back to her own bed. In addition she does not take her blanket out of her room, carefully puts it in her “Cokie Pouch” before leaving her room, doesn’t suck her thumb outside her bedroom and the few times she has, immediately stopped when reminded.
That she continues to test the waters outside of our home is something that isn’t altogether surprising. The problem is coming up with solutions to ensure she not continue unacceptable behaviors outside our home.
“You know if we tell her she can’t have a cupcake when she gets home, she’ll stop,” Richard said to me when I discussed the bus episode with him.
“Yeah, I know. I think that’s what we’re going to have to do,” I said.

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“Do You Think She’s Okay?”

Posted on December 3, 2010 by | Leave a comment

This morning I woke as usual at 6:25AM. Merlin, whose internal clock tells him it’s time for loud purring and affection typically paws at my nose somewhere between 5:00 & 5:30. I have always viewed my nose as “distinctive” however to Merlin it apparently resembles a mouse. By 6:40 I was out of the shower and by 6:45 in the kitchen, which was curiously dark and empty. Richard was in Nic’s room waking him, I could hear their voices speaking softly to one another, Merlin mewed at me, demanding to have a treat and Emma’s bedroom door remained firmly closed.
“Do you think she’s okay?” I asked Richard when he reappeared.
“Has this ever happened before?” Richard asked in answer.
“No.”
“Maybe she wants to spend some down time with Cokie,” Richard said, though he sounded unconvinced.
“You think?”
“I don’t know.”
“I’m getting worried.”
“Well what do you think could have happened?” Richard asked.
“I don’t know. She fell out of bed in the middle of the night, knocked herself unconscious or…”
“God, I thought I was the only one who had those kinds of morbid thoughts,” Richard said.
“Think I should go in and look?” I looked over at him. “I don’t want to wake her if she really is just sleeping. Maybe I should give her another ten minutes? Or I could just go in and peek, very quietly. But maybe it’s better to let her sleep…”
Richard, all too familiar with this kind of answer where I am essentially playing both sides of the net, nodded and wandered off.
Nic appeared wearing a short sleeved t-shirt, a shirt he loves and would wear to bed if allowed.
“Nic – it’s not even 40 degrees outside.”
“Yeah, but it’s really hot at school.”
“Please change your shirt.”
Nic returned wearing a long sleeved shirt, the short-sleeved shirt poking out from underneath the bottom. The whole outfit had a kind of disheveled, rumpled chic to it. Definitely not okay for school, however, even though it was “Casual Friday”. “What?” he asked, when he saw the look on my face.
“You’re kidding, right?” I asked him.
As Nic turned to go, muttering under his breath, Emma shot into the study on her scooter.
“Hey! Good morning Em!”
“Good job waiting ‘til it’s light out!” she said.
“You’re not kidding!”
Emma has never slept later than the rest of us, other than a couple of times at her Granma’s house in Colorado and then only after a full week of skiing all day, every day. It has never happened in New York. The wonders do not cease…

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On The Right Track

Posted on December 2, 2010 by | Leave a comment

This morning Emma’s scooter could be heard shooshing through the hallway toward our bedroom. “Hi Mommy!” she said as cheerful as ever, despite the fact it was 4:20AM. I groaned inwardly but managed to meet her cheerfulness with a somewhat less convincing, “Hi Em.” I looked over at her, “It’s too early. You have to go back to your bed.”
Without missing a beat she made a u-turn on her scooter and could be heard to say as she retreated, “You have to go back to sleep now. You have to wait til it’s light out. Then you can see Mommy!”
I literally held my breath, waiting for the screams to shatter the early morning quiet. “Do you think this will really work?” I asked Richard who appeared unconscious.
“Yeah,” he muttered, not moving a muscle.
I watched him for a few seconds for any sign of movement, any sign, which could be taken as encouragement for more conversation. When none came I stared at the ceiling marveling at the silence. Was it really possible? Could it be that she had returned to her room and was lying in her own bed quietly waiting for it to be “light out”? It seemed impossible. This was the last thought I had before surrendering to a fitful sleep. Every 20 minutes or so I woke up, listening for the cries, which never came.
At 6:30AM I rose. As I went into Nic’s room to wake him, I peered around the corner into Emma’s room. It was still quite dark so I didn’t trust what I was seeing at first. There she was, sound asleep in her own bed. I was astonished. So much so that I stood there for several seconds. By the time I’d woken Nic, turned on the lights in the kitchen and dining room, Emma shot out of her room on her scooter looking groggy, but pleased with herself. “Now you can see Mommy! Good job waiting til it’s light out,” she said, congratulating herself.
“That was really terrific Em,” I told her. “Not only did you go back to your own bed without crying, you went back to sleep!” I knelt down to give her a hug. She wriggled away from me, but I caught the smile on her face. “I’m proud of you, Em.”
This is the FIRST time Emma has gone back to bed without –
a) insisting one of us accompany her,
b) screaming when one of us dared not accompany her
c) coming back to our bedroom repeatedly.
“Did you notice she didn’t have Cokie with her when she came into our bedroom?”
“I didn’t think you were even awake, let alone noticing things,” I said.
“Of course I was awake.”
“She’s never done this before. It’s really incredible!”
“We’re on the right track,” Richard said.

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Change

Posted on November 30, 2010 by | Leave a comment

Saturday morning we could hear Emma’s scooter shooshing through the house before we saw her. She appeared at my side of the bed, with her Cokie in it’s designated “Cokie Pouch” and smiled at me. “Hi Mommy!”
“Hi Em!” I said. “Remember Cokie stays in your bedroom.” I stood up.
Emma raced off to her bedroom shouting cheerfully, “Cokie stays in your bedroom!”
What was utterly spectacular about the morning was, not only did Emma put her blanket back in her bedroom, but stayed in the living room, preferring my company to the solace of her blanket. Her thumb stayed out of her mouth as well. Emma’s thumb sucking, something I have lost sleep over more nights than I care to count, has deformed her mouth requiring years of dental work in the future.
The following morning, Emma arrived at the side of the bed. “Hi Mommy!”
This time Emma was not holding her blanket and later when I went into her bedroom, there Cokie was, stuffed in the “Cokie Pouch” and left on the oversized armchair. Emma stayed in the living room with the rest of us, cheerfully playing. She spoke more words over the past weekend, than any of us have ever heard. She pretended to go on the school bus, she acted out various children on the bus, admonishing them, “No spitting!” and “Logan, sit down!” She then pretended to go on the airplane to “visit Granma and see Claudie,” before going to “Becky’s class” where she recounted how she’d made Becky “so angry” by ripping the class copy of Goodnight Moon.
Emma’s continuous flow of dialogue was nothing short of profound. We were all astonished by it.

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Thanksgiving With Emma

Posted on November 26, 2010 by | 1 comment

Yesterday we hosted Thanksgiving at our place.  It makes it easier for us in many ways to be home, as I love to cook and Emma can race around on her scooter while the rest of us enjoy each other’s company and later sit down to a thanksgiving feast.  Whenever we have a large celebratory gathering at our house, I put out a place setting for Emma, even though we know she won’t sit and eat any of the food I’ve prepared.  As I set the table yesterday afternoon, I allowed myself to imagine for a minute what it would be like to have all of us gathered for a meal, something I looked forward to with almost frenzied excitement as a child.  Not so with Emma.  Unless birthday cake is being served and then only if it’s vanilla cake with vanilla frosting, Emma can be counted on to forgo the meal.  Since she also cannot communicate in any substantial way, there is absolutely no allure for her to sit with us and we’ve given up insisting that she try.

So it was yesterday as our guests began to arrive, Emma in her “pretty dress” which actually was a taffeta skirt with tulle and a black turtleneck.  Emma insisted on yanking the skirt down around her hips so the gap between where the turtleneck ended and the waistband of the skirt began was substantial, giving the whole ensemble a kind of weird, grungy chic.  She shot around the living room on her scooter, while Nic joined us for conversation and hors d’oeuvres.

“Edie bring Toni books?” Emma asked as I was pulling the turkey out of the oven, checking on the nearly burned roasted vegetables and wondering whether I had ruined the meal, while the mashed potatoes warmed in the oven and the brussel sprouts were being sauted on the stove.

“What?” I asked.

“Edie bring Toni books?” Emma repeated.

“Who’s Edie?” one of our guests inquired.

“He delivers UPS packages.”

“Edie come?” Emma asked.

“Yes, Em, let’s order some books tomorrow and Edie can deliver them.  But you have to tell me what books you want,” I said.

“Edie come?  Edie bring Toni books?”

It’s not clear why Emma has equated my sister or someone else with the name Toni, with getting books.  The last book Edie delivered for Emma was a book we couldn’t find at Barnes & Noble, so ordered online a few months ago.   Ever since, but recently with increasing excitement Emma has been requesting that Edie deliver books to her.  We have asked her numerous times to specify what book she is hoping to receive, with little success.

Eventually Emma gave up and contented herself with listening to music on her ipod only reappearing at the end of the meal.  “Dinner is all done,” Emma announced.

We had retired to the living room so no one was offended and thankfully she did not start bringing people their coats.  “Yes, Em.  That’s right.  Dinner is over now,” I said.

“Emma blow out the candles?”  Emma said as she leaned over the dining room table and blew a candle out.

“Yes, Em.  Go ahead.”  After which, Emma could be heard singing loudly to various music videos in her bedroom.

“Wow!  She really has a great sense of rhythm,” one of our guests noted.

This morning I went online with Emma and she chose several books, which I ordered and expect will be delivered in another week or so.  “Edie bring Emma books?”  Emma said when we finished the checkout process.

“Yes!” I said.  “You should get them in another week.”

“Next week,” Emma said, nodding her head.

“Yes.”

“Go to gymnastics?”  Emma said.

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