Category Archives: language

Returning Home

Posted on January 13, 2011 by | Leave a comment

When I finally returned home – after midnight – I crept into both the children’s rooms and stood at the foot of each of their beds for a moment.  Emma lay sprawled out one leg thrown over her duvet despite the cold, one hand clutched a shred of her blanket.  I watched her for a moment, her blonde hair fanned out on the pillow, her chest rising and falling with each breath.

Richard and the children returned to New York the week before me, though it felt as though I hadn’t seen them for a month.  The next morning Emma appeared in our bedroom at 6:29AM.  “Hi Mommy,” she said pointing at me.  “It’s Mommy!  Mommy’s back!” she cried, before climbing into bed beside me.

“Emmy!”  I answered, hugging her.  “It’s so good to see you!  I’ve missed you.”

“Missed Mommy!” Emma said.  Then she gave me a kiss on my cheek.

The following night I read to Emma before turning out the light and leaving.  Emma began breathing rapidly and making little panting noises, expressing her distress at my leaving her.

“It’s okay, Emma.  I’m not going anywhere.  I’ll be in our bedroom when you wake up tomorrow morning,” I tried reassuring her.

“Mommy!  Mommy stay!”  Emma cried.

“Em, I’m not going anywhere,” I repeated.  I’ll be right here.  It’s okay.”

Unconvinced, Emma pointed at me, “You,” she said, then pointed to herself, “and me, in Emma’s bed.”

“Okay Em.  I’ll stay here for a few more minutes and then I’m going to go into my own room.”

By the time I left her, it seemed she had finally fallen asleep, only fifteen minutes later she appeared in our bedroom.  “Mommy!”  She cried.

“It’s okay Em.  I won’t leave.  I’ll be right here when you wake up.”

“Mommy come.  Mommy come into the other room,” Emma pleaded.

I returned her to her bed and sat with her for close to an hour before telling her I was going to go into our bedroom, that I was going to be there when she woke up, that I wouldn’t leave.  “Okay,” she whispered.

Within five minutes she was back in our bedroom crying for me.  I knew how distressed she was.  I knew she was worried I was going to leave again.  I knew she just needed reassurance and eventually she would understand that I wasn’t going anywhere.  But I was also utterly exhausted and by this time it was after midnight.  I could feel my patience dissipating.  “Emma, you have to go back to your bed.  You have to trust me that I’m not going to leave.  I will be here in the morning.  I have to go to sleep now and so do you,” I said.

When Emma didn’t return to her bed, but instead stood staring at me unconvinced, I got up and said, “Emma!  Go to bed NOW!”

Emma turned away.  “Mommy come!”

I followed her into her room, sat on the edge of her bed and said, “Don’t worry, Emma.  I’ll be in the other room when you wake up.  I promise.”

“Okay,” Emma said, holding my arm tightly.

“It’ll be okay,” I said.

Emma nodded her head, “It’ll be okay,” she repeated, not letting go of my arm.

Leave a comment

Posted in Autism, language, Parenting

Tagged , , , , ,

“Sorry Bubbles”

Posted on January 5, 2011 by | 2 comments

Emma calls the stars in the sky – Sorry Bubbles – it has a certain poetic beauty to it.  She used to call fireworks, rain and the noise motorcycles make, “bubbles”.  But “sorry bubbles” remain my favorite.  This New Year’s Eve she referred to the fireworks, which showered Aspen Mountain as “fireworks”.

“Look!  Look at the fireworks!” she cried.  Then she made noises, which sounded a bit like the noise fireworks make.

“Does the noise bother you?” I asked.

“Yes!” she said, covering her ears.

“Does it scare you?” I asked.

“Noooo!” she said, laughing.

“Do you want to go outside with Daddy and watch them?”

“Do you want to stay inside the boy’s house?” she answered.  Which meant she wasn’t asking a question, she was stating a fact.  She wanted to stay in our friend’s house and most definitely did NOT want to go outside in the 10 below zero cold to watch the fireworks with her Dad.  Richard stayed close to the house and occasionally jumped up and down to keep himself warm.

“Dance, Richard!  Do your dance,” Nic’s friend, Eli said, from the warmth of the kitchen.

“Daddy’s jumping!” Emma commented.

“He’s trying to stay warm,” we told her.

“Daddy wants to see the fireworks.  Daddy’s cold,” Emma said.

Later as we made our way back to our house and after the fireworks had ended, Emma looked up at the sky and said, “Sorry bubbles!  Look at sorry bubbles!”

“Is that what you call the stars, Em?” I asked, confirming what I suspected.

“Yeah!”

2 Comments

Posted in Aspen, Autism, language

Tagged , , , , ,

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.

1 Comment

Posted in Aspen, Autism, language

Tagged , , , , ,

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.”

Leave a comment

Posted in Aspen, Autism, language

Tagged , , , , , ,

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.

Leave a comment

Posted in Autism, language

Tagged , , , ,

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.

Leave a comment

Posted in Aspen, Autism, language

Tagged , , , , ,

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.

3 Comments

Posted in Autism, language, Parenting

Tagged , , , , ,

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.

Leave a comment

Posted in Autism, language, Pretend Play

Tagged , , , , ,

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.

1 Comment

Posted in Autism, language, Speech

Tagged , , , , ,

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.

Leave a comment

Posted in Autism, language, Speech

Tagged , , , , , ,

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.

Leave a comment

Posted in Autism, language

Tagged , , , ,

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.

Leave a comment

Posted in Autism, language, Parenting

Tagged , , , , , ,

Societal Subtleties

Posted on October 11, 2010 by | Leave a comment

“Emmy, I’m leaving.  Have a good day with Joe,” I said, as I was getting ready to go.  I went over to where Emma lay under the duvet in our bed with her earphones on listening to one of her favorite songs, The Beatles – Happy Birthday.  “I love you, Em.” I said as I bent down to kiss her.  She turned her head, as she almost always does, so that I kissed her forehead.

“So much,” Came Emma’s muffled answer.

“I love you so much,” I said, kissing her cheeks.  Emma said nothing in response.  I waited for a few seconds, “Em, you say – I love you Mommy.”

“I love you…” Emma looked at me as I pointed to myself.  “Emma,” she added smiling.

“Not Emma!” I said, kissing her again.  “I love…” I pointed to myself.

“Mommy!”  Emma finished.

“That’s right Em. I say – I love you Emma and you say – I love you Mommy!”

“I love you Mommy!” Emma echoed, before ducking her head down under the covers.

I went out to the living room.  “Bye Nic.  I love you.”

“I love you too, Mom,” Nic said without hesitation.

Just another morning in the Zurcher-Long household, such simple things we so easily take for granted, are stumbling blocks for Emma.  It’s not only pronouns that trip her up.  It’s the simple human niceties we do and say to one another that mystify her too.

After months of prompting, Emma now will say, “I’m fine” in answer to, “How are you?”  She understands the rote answer is what is expected and what will suffice.

“Most people really don’t want to know how you really are,” a friend of mine said to me once.  “They’re just asking because it’s expected and they don’t want to seem rude.  But can you imagine if you answered them honestly.  You know, by saying something like:  Not so well.  I’m struggling with some thorny issues I’d like your advice on.”

I interjected,  “Or – let’s sit down, this may take a few minutes.”

“Exactly, I mean that’s why everyone goes to a shrink,” my friend said matter-of-factly.

Leave a comment

Posted in Autism, language, Speech

Tagged , , , , ,

The Elusive Pronoun

Posted on September 29, 2010 by | Leave a comment

Autistic children are known to have trouble with pronouns.  It is not simply mixing up “you” and “me”, but all pronouns; he, she, her, his, I, you, me, we, us…  There are theories regarding this confusion.  One such theory from Simon Baron-Cohen who coined the phrase “mindblindness” suggests autistic children have trouble self differentiating and therefore become confused when confronted with pronouns.  He has since amended his theory, suggesting autism is a form of “male brain” or empathizing-systemizing (E-S) theory.  He goes on to explain that autism is a series of deficits and delays in empathy.

As with all things “autistic”, it’s a theory.

Last night Emma came into our room at 2:30AM.

“C’mon Em.  You have to go back to your bed,” I told her.

“Mommy come.  You have to ask Mommy.  Mommy can I get you come into the other room?” Emma said, sadly.

“I’m going to go with you.  Come on.  Let’s go back to your bed,” I said, holding her hand.

I tucked Emma into bed and sat next to her, stroking her head.  “Now Em, you need to try to go to sleep.  You need to go to sleep and stay in your own bed until it’s light out.  Then you can come into my room.”

Emma took her hand and gently pressed it to my cheek, “You,” she said.  Then she took my hand and pressed it to her cheek, “Me,” she said.

“That’s right, Emmy!  You,” I pressed our hands to her mouth, “and me,” I said, holding our hands to my face.  This is going better than I expected, I thought. “I’m going to go back to bed, Em.  You have to stay here and try to go back to sleep, “ I explained.

“Okay,” Emma said.

I stood up.

“No!  You and me!” Emma cried.

And then I understood.  She was telling me she wanted me to stay with her.  I had assumed she was showing me she understood the correct use of the words, “You” and “Me.”  It was an interesting moment, with me taking her words literally, and Emma trying desperately to convey her upset and desire for me to stay with her.

“Okay, Em,” I said.  “But I’m really tired.  I have to get some rest,” I tried to explain.

“It’s okay,” Richard said, appearing at the door.  “You go ahead.  I’ll stay with her.”

“Mommy stay with Emma!” Emma said tearfully.

“Mommy has to go to sleep, Em,” I reminded her.

“Okay,” Emma said.  With that she got up and raced past both Richard and me to our bedroom.

“It’s okay,” Richard said with a resigned tone.  “Go with her, I’ll stay here.”

This morning as we went through the motions of getting breakfast for the children, checking backpacks, I said to Richard, “And how long did it take you to fall back asleep?”

“Oh, about an hour and a half,” he said.

“Yup!  Em and me too,” I answered with feigned cheeriness.

“Looks like a beautiful day,” Richard commented, glancing out the window.

“Another gorgeous day,” I agreed.

“Fake it til you make it,” Diane Von Furstenberg told an audience member at the WIE Symposium a few weeks ago.

It’s all in ones perspective.

Leave a comment

Posted in Autism, language, Sleep Issues

Tagged , , , , ,

“Let’s Talk to Her”

Posted on September 22, 2010 by | 1 comment

Making the decision to talk with Emma about something has not been a consideration until recently.   For those of you who are loyal followers of this blog you might be caught off guard by the hopeful tone to this first sentence.  If so, you’re right.  It’s all part of the roller coaster ride we’re on.  Feeling despair, feeling hopeful, feeling despair, feeling hopeful…  Like some sort of Möbius strip, we twist and turn.  Someone said to me once:  feelings aren’t facts.  I try to remember that when I am feeling gloomy and attempt to forget it when I’m optimistic.

Fact:  Emma waking in the middle of the night disrupts the entire family.   Richard and I decided a few weeks ago we would try talking with her about it with varying degrees of success.  See What Now? , Wake Up and Good Bye Diapers! The fact that we had even one night without the sound of her mind-numbing shrieks or her stealthily crawling into our bed at 2:00AM was progress.  So last night I decided to spend some time going over what I hoped she would be able to understand.

“Em, it’s time to get ready for bed,” I began.

“Go to sleep now,” Emma said, nodding her head.

“Yes, and when you go to sleep you stay in your own room,” I waited for a response.

“Okay, Emma?  You have to stay in your bedroom all night.  You cannot wake Mommy and Daddy,” I waited for some indication of understanding.  When there was none, I added, “You have to wait until it’s no longer dark.  If you wake up in the middle of the night you look out your window.  If it’s still dark you stay in your own bed and go back to sleep.”

“Go into Nic’s room,” Emma whispered.

“No, Em.  You stay in your own bed,” I explained.

“You have to wait,” Emma said, nodding her head up and down.

“That’s right, Em,” I smiled at her and kissed her forehead.

“You have to pull on Mommy’s robe.  Mommy can I come get you into the other room?”  Emma said.

“No, Em.  You wait until it’s light out.  Then you can come into Mommy’s room.”

“You have to wait,” Emma said again.

I continued to go over the plan with her, step by step.  I attempted to explain the need for her to try and go back to sleep if she woke up in the middle of the night, the importance of staying in her own bed.  I even went over breathing techniques to help her if she began to get upset and wanted to wake us.  Emma nodded her head throughout all of this and interjected with things like, “Mommy’s so upset” and  “You cannot wake Mommy”.

“You’re beating a dead horse,” Richard would have said had he been there to witness the ‘conversation’.  I stopped talking, unsure if any of what I said had been understood.

When it was 6:30AM and Emma had not appeared, I smiled as I readied myself for the day.  By 6:50AM and still no Emma I congratulated myself on a job well done.   As I made my way out to the kitchen I paused at Emma’s room and peeked in.  Her bed, a crumple of sheets, duvet tossed on the floor, pillows scrunched into the corner, looking as though a brawl had broken out, was empty.  I opened the door to Nic’s room and saw Emma snuggled up to her brother fast asleep.

Nic woke with a start and groaned.

“Hey Nic.  Are you okay?” I asked.

“No,” he moaned.

“What happened?” I asked.

“Emma!  She kept me up all night.  I’m so tired,” he said.

“Oh, Nic, I’m so sorry.  Was she awake a long time?”

“I don’t know, she kept going like this,” he said putting his hand over my mouth.  “And then when I ignored her, she’d do this,” he demonstrated by pushing my forehead with the palm of his hand.

“Nicky, I’m so sorry.  I told her not to wake us, so she woke you instead.”

“It’s okay, Mom,” Nic said looking up at me blearily.

“Ach”, I muttered under my breath.  “Next time come get me, okay?  I’ll get her out of your room,” I said.

“Yeah, okay Mom,” Nic said.

As I rode the subway to my studio I consoled myself with the thought that even though I feel terrible for Nic that Emma woke him, it is an enormous sign of progress she understood at least part of the message I tried to convey to her last night.

I will speak with Emma again tonight.  Maybe she’ll understand the entire message.

Who knows?  .

As my brother Andy says, “Who knows anything?”

1 Comment

Posted in Autism, language, Parenting, Sleep Issues

Tagged , , , , , ,