Tag Archives: Parenting

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.

Leave a comment

Posted in Autism, Parenting

Tagged , , , ,

“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…

Leave a comment

Posted in Autism, Parenting, Sleep Issues

Tagged , , , , , ,

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.

Leave a comment

Posted in Autism, Parenting, Sleep Issues

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 , , , , ,

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.

1 Comment

Posted in Autism, Speech

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 , , , , , ,

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.

2 Comments

Posted in Autism, Parenting, Sleep Issues

Tagged , , , , , , , , ,

Flash Cards

Posted on October 28, 2010 by | Leave a comment

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

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

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

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

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

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

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

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

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

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

No response.

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

Immediately Emma reached over and chose the correct card.

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

This is Emma.

Leave a comment

Posted in Autism, Parenting

Tagged , , , , , ,

Books

Posted on October 21, 2010 by | Leave a comment

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

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

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

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

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

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

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

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

Just one more small step forward…

Leave a comment

Posted in Autism, Parenting

Tagged , , , , , ,

My Emma

Posted on October 19, 2010 by | Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who knows?

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

Leave a comment

Posted in Autism, Parenting

Tagged , , , , , ,

A Little Gratitude

Posted on October 15, 2010 by | Leave a comment

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

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

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

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

“I’ll get her,” Richard said, grimly.

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

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

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

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

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

I cannot imagine.

Leave a comment

Posted in Autism, Marriage, Sleep Issues

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 , , , , ,

A Cry For Help

Posted on October 6, 2010 by | 2 comments

“Mommy!  I need help!” Emma said last night at 3:30AM.  Her cheeks damp with tears, her face conveyed the discomfort she felt.

“Here Em, try to yawn.  Go like this,” I said opening my mouth wide and moving my lower jaw from side to side.  We’ve been over this, countless times in the past week.  It was the same dialogue, just a different day, different hour of the night.  I became aware of the pressure in my own head, making my ears pop.  The air pressure outside must have changed during the night I thought.

Emma has become hypersensitive to any slight change in air pressure.  She tries to pop her ears by holding her nose and blowing, turning her face red until the pressure is alleviated.  Sometimes her method seems to even work.  One of us taught her to do this on an airplane once, I can no longer remember when or which one of us.  But it served its purpose and now she’s convinced it will help any time she feels any pressure.  The problem is, it also appears to cause the uncomfortable sensation and exacerbates the pressure when we are firmly on land and not flying in an airplane.  Explaining this to Emma has not proven helpful.  She cannot understand the subtleties of the situation.  When in an airplane hold your nose and blow out, when on land try to yawn.

“Mommy!  Mommy!”  Emma cried.  Her eyes searched mine, panic rising.

“I know baby, come here,” I said.  I tried to massage her ears by pulling gently on the lobes.  I pretended to yawn hoping this would produce a yawn from her.  It did not.  Emma does not yawn in response to seeing someone else yawn the way most of us neuro-typicals do.  When I yawn, Emma watches me and continues doing whatever it is she was doing before I yawned.  I found my mind going off on a tangent about what this means, mirror neurons and the like.

“Mommy!  I need help?” Emma said this last as though it were a question.  As though she were asking – Do you need help?  Instead of what she means, a demand for some assistance, a plea to have her mother make the pain go away.  Except I cannot make the pain go away, I can only try to get her to yawn.  I tried again.

“Do this Em,” I pretended to yawn, only this time I actually did yawn.

Emma watched me intently.  She opened her mouth and breathed out.  She could not make the connection.  She wasn’t able to make her ears pop, she was unable to reduce the pressure even if only momentarily.  Emma held her nose and breath, pushing her cheeks out, like a trumpet player.

“There.  That’s better,” she said.  A second later she was at it again, crying and requesting help.

I stroked her head and tried to talk in a soothing tone.  “It’ll be okay, Em,” I said, unsure what else to say or do.

Emma nodded her head.  “You have to yawn,” she said.

“That’s right Em.  Try to yawn,” I agreed.  I waited a few seconds then asked, “Is it better now?”

“Yes.  Better,” she said.  “Time to go to sleep.  It’s okay,” she said, snuggling down under the sheets.

“Yes.  Good idea.  Try to sleep,” I said.

As I write this I am aware of the continued pressure in my head.  I wonder if I have this feeling all the time, but just shut it out.  Now I too am hyper aware of the sensation.  Not painful exactly, but uncomfortable.  I imagine what it would feel like if I didn’t know it was due to the changing weather, the fluctuating air pressure.  I do not panic when I feel it because I know it will go away of its own accord and it’s not intolerable.  But what if I couldn’t understand what it was?  What if I couldn’t understand the explanations given to me?  What if it was just something that happened, seemingly arbitrarily, with no remedy?

Would I panic?  Would I cry out for help?

Yes.  I would.

2 Comments

Posted in Autism, Parenting, Speech

Tagged , , , , , ,

Autism and the Family

Posted on October 4, 2010 by | Leave a comment

“Mom! “ Nic’s cries could be heard throughout our home.

“What is it, Nicky?” I asked.  It was 1:00AM.  I could hear Emma whimpering.

Nic began to cry.  He stood in the middle of the living room, pointing toward his bedroom.  “She’s in there, she woke me again,” he said before bursting into tears.

“Oh, Nicky.  Come on.  I’ll get her out of your room,” I took his hand and led him back to his bed where Emma lay.

“Emma!  This is not okay.  You may not wake up Nic!”

“Nic’s room, bye-bye!”  Emma said cheerfully.  Then she began to whimper.

“That’s right.  You may not wake up Nic.  Go to your room,” I said.

“No.  Not going to wake up Nic,” Emma said.

The night before Emma woke everyone by screaming in the middle of the night.  It was similar to being woken by an air raid siren, jarring, disconcerting.  The shrieks were deafening.  We punished Emma by not allowing her to have her beloved pancakes the following morning.  Even so, she seemed not to fully understand the connection.

Emma’s nocturnal awakenings affect all of us, but so do her public melt downs, her inability to communicate, her inability to understand and empathize with others, her limited food choices, her inflexibility.

Perhaps of all of us, it is hardest on Nic.  He is the one who gets the brunt of our impatience.  It is Nic who feels the weight of being expected to be the “normal” one, who understands and feels our stress, who feels fury with Emma for her very public displays, which he finds increasingly intolerable and embarrassing.  He longs for a “regular” sister, one he can play “hide and seek” with, one who will play card games with him.  One he can talk to.  As exhausted as Richard and I are by our sleep- deprived nights, we do our best to plod along.  We talk with one another, lean on each other.  We rely on gallows humor when everything seems bleak.  And while we encourage Nic to talk honestly about his emotions, I wonder whether he really feels he can.  I wonder whether he doesn’t feel he is placing yet another burden on us, and censors his thoughts and feelings.

For several years after Emma’s diagnosis Nic went to see a child psychologist.  A year ago he requested that he not go any longer.  We spoke with him at length and promised him we would not force him to continue seeing her if he didn’t want to go back.  Since then, I have asked him several times whether he’s sure he wouldn’t like to return or find a new therapist, he has continued to say no.

I have learned over the years, that as bad as things are or seem:  a) they can always get worse, b) they can seem worse than they are and c) one can always shift ones perspective ever so slightly enabling one to see things differently.  I have found when I am able to achieve a more balanced perspective I am better able to cope.

Emma has changed all of our lives dramatically.  She has pushed each of us.  Sometimes it feels to our breaking point, but we have all survived thus far.  Emma forces me (I will not presume to speak for any of the other members of my family) to pay more attention.  I appreciate small gestures, small acts of kindness more than I did before Emma’s diagnosis and it inspires me to do the same for others.   For instance, I am constantly aware of how hard my husband, Richard works to help her, to help Nic, to help me.  He is a rare breed, fiercely ambitious, a visionary and yet places his family firmly first, not just in thought, but in his actions.  He believes in equality and behaves in accordance to those beliefs.  He is as strong a man as I have ever met, giving both emotionally and physically of himself.

Emma has taught me to see the world differently.

And it is beautiful.

Leave a comment

Posted in Autism, Siblings, Sleep Issues

Tagged , , , , , , , ,