Tag Archives: autistic

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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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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