Tag Archives: autistic

Emma’s Birthday

Posted on January 10, 2011 by | Leave a comment

This coming Sunday we are giving Emma a birthday party.  In years past this has been a dubious endeavor, often met with initial excitement on Emma’s part, only to end with complete indifference or worse.

When Emma turned four, we hired a musician to come to the house and play kid friendly music before eating pizza and cake.  Emma spent the entire hour and a half trying to lie inside the musician’s guitar case, while Richard and I tried, with little success, to entice her to join the party.  The other children, many of whom were also diagnosed with autism, ran around, danced, sang along with the music or sat watching and listening with their mother or caregiver.  Richard and I took turns excusing ourselves and each went separately into our bathroom where we allowed ourselves a few minutes to cry, before mustering up the strength to return to our guests, doing our best to act as though everything was fine.

It was also the year we had been called into a parent/teacher conference at her special education pre-school only to be told our daughter was a “red flag” and that she had “flat-lined” in her development.  It was a tough year.  A year Richard and I still refer to when we feel doubtful of Emma’s current progress.  That year marked a time of desperation, sadness and a general feeling of impotence on our part.   It seemed whatever therapy we tried, whatever medical interventions we took on, nothing made a difference.

This year, Emma not only told me where she wanted to have her party she also told me which of her friends she wanted to attend her party.  Before she left Aspen (where I am currently snowed in) she listed all the people she wanted to invite.  She was very specific.  When I asked about a couple of children, she said simply, “No.”  It was the same with the place.  She wanted a specific place where she can play and do gymnastics with her friends.  Afterwards we will order pizza, which Emma won’t eat, and cupcakes, which Emma will.  I expect it will be a very different kind of party than five years ago when she turned four.  Emma has come a long way in five years.

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Dozer

Posted on January 7, 2011 by | 1 comment

This is my talented nephew, Bridger’s puppy, Dozer.  This photo was taken in October.

The aptly named, Dozer, is now at least four times as big and still growing.  To my son, Nic, he is a welcome addition.  Dozer’s hair is as soft as the finest fur.  He’s full of puppy energy and best of all, loves to be with kids.  Nic is ecstatic and cannot wait to see him again.

For Emma, however, Dozer is a furball nightmare come true.  He’s bouncy and teething so he nips and grabs hold of anything that moves.  His actions are erratic – he seemingly comes out of nowhere and jumps to lick, usually the face.  That he is adorable is completely lost on Emma.  All she sees is black menacing fur in the shape of a not so small bear, rapid movement, wet tongue, drool and sharp teeth.  To say she is terrified of him, would be a vast understatement.

When Emma went up to the barn one day while out in Aspen for the holidays, Dozer came out to play.  Emma was terrified as Dozer bounded toward her at a rapid clip.

“Pick me up!” she screamed.

Emma now weighs over seventy pounds, so picking up a writhing, screaming, terrified body is not an easy task.

“Pick me up!” she screamed again, pulling at my arms.

I tried to shield her with my body, but Dozer was so fast, he was able to bounce around me, giving Emma an enormous, wet “kiss”.  Only to Emma it wasn’t a “kiss”, it was nothing short of an assault.

“Mommy!  PICK ME UP!” Emma shrieked, her fear palpable.

Eventually we managed to get to the barn and locked Dozer out where we could hear him pacing up and down, trying to find an alternate means of entry.  Add a creepy sound track and you have nothing short of a scene from a horror movie.

After twenty minutes or so, we peered out the door to see if an escape was possible.  There Dozer was, lying in front of the only door, his enormous body draped across the exit, making any attempts to leave impossible.

Emma began to fret.

“It’s okay Em.  I’ll pick you up,” I reassured her.

“No Dozer.  Dozer go back to Bridger’s house,” Emma said desperately.

“It’ll be okay, I’ll carry you down the road and Dozer will go home,” I said.

Except when I picked Emma up, she is so tall now, her feet dangled not far from the ground, an easy grab for Dozer, who comes up to my hips.  Emma screamed and tried to “climb” up my body.  The whole thing would have been comical had I not been trying to hold onto her, while pushing Dozer away, somewhat like trying to move a stalled car, as we made our way down the ranch road.  “It’s okay, Em.  He’s not going to hurt you.  He wants to play, that’s all,” I told her.

Any time I saw Dozer’s attention stray, I would take a moment to rest by putting Emma down, where upon she would immediately scream, attracting Dozer’s attention again.  Back he would race to see what he was missing.  It was a laborious process and poor Emma by the end of the trip was repeating over and over again the same ineffective words – “Dozer! NO!  You have to go back to Bridger’s house!  You have to stay inside!”

Only Dozer had no intention of returning to an empty house, he was having far too much fun with this odd child and her fumbling mother.

Later, in the safety of Granma’s house, Emma stared out the window and said, “No you cannot go up to Bridger’s house.  Dozer has to stay inside. It’s okay.  It’s okay.  Dozer has to go home.”

Now Emma is safely back in New York, home to millions of dogs, but very few Newfoundlands, so perhaps she feels safe, finally.

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A “Conversation”

Posted on January 6, 2011 by | Leave a comment

“Hi Mommy!”  Emma said this afternoon into the phone.

“Hi Em, how are you?”

This is a standard question which Emma never fails to answer with a cheerful, “I’m fine!”

“Did you have a good day at school?”  I asked, knowing that she did not have a good day.  In fact, Emma’s teacher wrote us an email describing how Emma was unable to focus, wept for a good part of the day, cried for me and zoned out for much of the rest.

“No you cannot go on the baby swing.  It’s too small!”  Emma said in answer to my question.  “You have to wait over here!  You have to go on the big swing.”

I knew what Emma was referring to as she was picking up on a “conversation” we’d begun before she flew back to New York.  I have no idea why the swing in “Seal Park” was occupying her mind, but it evidently was.

“That’s right, Em.  You’re too big for the baby swing!”

“You have to wait.  You have to swing on the other one,” she continued.

“How was school today, Em?” I asked, hoping to bring the conversation back to the present.

“It’s too small for you!”  Emma laughed.  And then she said something else, but she was wandering away from the phone so it was impossible for me to hear what it was.

“Hey,” Richard said into the phone.

“Was she okay when she came home?” I asked.

“She’s been great.  Happy as a clam,” he answered.

Okay then.

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“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!”

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Going Home

Posted on January 4, 2011 by | Leave a comment

“Wake up, get on airplane, go through tunnel, see Merlin kitty, see Joe!” Emma said upon waking this morning.

“Yes, Em.  That’s right.  You and Daddy and Nicky are going on the airplane this morning,” I answered.

“One, two, three, four, five,” Emma said, pointing at each of us.

“Five of us are going to the airport, but three of you – Daddy, you and Nic are getting on the airplane.  I have to stay here with Granma for a few more days,” I explained.

“One, two, three, four, five to the airport, then you and Mommy and Daddy and Nicky go on the airplane,” Emma said.

“You are Emma.  Just Emma and Nic and Daddy,” I said as she looked at me.

“You,” she said, pointing to me.

“No Em.  I have to stay here and work for a few more days, but I’ll try to come home on Thursday or Friday.”

“Mommy on the airplane,” Emma insisted.

“I’m sorry Emmy, but I’ll be home soon.”

I waited for her to say, “Okay”, but she never did, because it wasn’t okay and I knew it.  Regardless, I have to work for a few more days here, tying up loose ends before I can leave to join my family in New York.  Meanwhile both Nic and Emma have school tomorrow and Richard will be going through the piles of mail, making sure both children get on their school busses on time, picking up groceries, sorting through laundry and all the other things necessary to returning home after being away.

I miss them already.

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Making Sense of It All

Posted on December 31, 2010 by | Leave a comment

Yesterday as I was driving the children with all our ski gear to the slopes, Nic said, “Mom, did you get me a new pair of poles?”

“No Nic, I didn’t,” I said.  “What’s wrong with your poles?”

“I can’t use them any more,” he answered.

“Why not?”

“The baskets fell off.”

“What do you mean the baskets fell off?”  I asked with growing irritation.

“I don’t know.  They fell off.  I can’t ski with them.”

I began imagining the long lines at the rental shop at Buttermilk, how we were suppose to meet Emma’s Challenge Aspen ski buddy in less than five minutes and we were just leaving the house.  I said as much to Nic who now sat quietly in the back seat staring out the window.

“Mommy’s so upset,” Emma’s voice could be heard saying, from the backseat.  “Nicky’s so upset.  Mommy’s angry.”

“Oh Em,” I said.  “I shouldn’t have gotten angry just now.  I’m sorry Nic.  Don’t worry, we’ll borrow a pair of poles and get you a new pair this afternoon.  Okay?”

“Okay,” Nic said.

“Hey Em?  Are you excited to go skiing?”  I asked.

“Yeah.  Ski with Mommy and Nicky and Matt!” Emma said.  “Mommy’s upset.  Nicky’s upset.  Nicky wants to jump off the diving board.  I’m sorry, it’s closed.  Nicky’s crying,” Emma continued cheerfully.

This kind of dialogue from Emma is typical, she applies whatever logic she can to a given situation, usually however, it’s incorrect.  She will come up with reasons for someone’s upset with things that have recently upset her.  If Emma doesn’t get to the Aspen Recreation Center by a certain time during the week, the diving board is closed and she cannot jump off it.  As jumping off the diving board is one of her favorite activities, she is upset when she realizes she won’t be able to.  That Nic is now upset, it stands to reason, he must be upset as she is, about the diving board.

“I don’t care about the diving board Emma,” Nic grumbled.  “And I’m not crying,” he added.

“Hey Em.  Nicky’s not upset about the diving board.  Nicky’s upset because I was cross with him about his ski poles,” I explained.

“You got that right,” Nic muttered, giving me a grin.

“Nicky’s upset, Nicky’s angry, Mommy’s so upset, Mommy’s angry, Emma’s upset, Emma wants to jump off the diving board,” Emma said.

It’s a bit like watching an Olympic Sporting Event where the newscaster does an ongoing narration of the events as they develop.  Only Emma is reporting on events with reasoning which has nothing to do with what’s actually going on.

“Mom, make her stop,” Nic said irritably.

I began laughing, “I can’t Nic.  She’s just trying to make sense of it all.”

“But it doesn’t make any sense,” Nic said.

“It does to her,” I answered.

“Whatever,” Nic said.

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The Good News And The Bad News

Posted on December 30, 2010 by | Leave a comment

Emma has been spitting on people – that’s the bad news.  A few days ago she spit on people while waiting in line for the chair lift.  This has been an ongoing problem.  One we have tried, with little success to eliminate by – taking away privileges, taking away favorite activities, talking to her – so far, little seems to sink in.  The act is random and seemingly without malice.  It appears she just likes the sensation and doesn’t understand the implications or how disrespectful it is to those who come under her spray.

We are hoping if we continue to diligently keep on her about it, immediately removing her from the situation, not allowing her to do the things she loves when she spits as well as wildly praising her when she does not spit, one day she’ll figure out it’s more fun when she doesn’t do it.   Yesterday there was no spitting, but there never is when we are with her.  She spits when she isn’t with us.  And perhaps that’s what she is telling us – you guys are working too much, spend more time with me.  Or maybe she just likes to spit.  I have no idea.

Yesterday I skied with Nic and Em and I will again today.  I will go into the store later in the afternoon.  To any working parent, who must manage their time – trying to maintain that tricky balance of work with time with ones children, particularly when ones child is acting out – this must sound familiar.  I know it’s certainly not unique.  With an autistic child who doesn’t seem aware of the implications of their actions, it all feels pretty daunting.

The good news is Emma is more often than not sleeping through the night and when she has woken up in the middle of the night, as she did last night, she is returning to her own room and bed without complaint after being told to do so.  Yesterday she picked up one of Nic’s toys, it’s called “Bop It!”  A gift from Joe, Emma’s therapist of almost seven years, it was a huge hit when Nic received it, though Emma has never showed any interest in it.  Yesterday Emma picked it up and started playing it.  You have to do what the voice commands.  “Bop it!” “Twist it!”  “Pull it!” and if one isn’t quick enough it says, “Oh so close!”

Emma was able to follow ten of the commands before losing.  She became distracted by the music and began bopping her head up and down to the beat of the music, forgetting to “pull it!”  When she lost, she laughed and then played again.  At the moment I am clinging to the “good news”, while doing my best to manage my concerns about her random spitting.  We will continue to monitor her behavior and immediately intervene when she spits.

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Christmas

Posted on December 25, 2010 by | Leave a comment

Here’s the thing about Christmas with Emma – she has never shown any interest in it.  The whole Santa thing never held any appeal.  Fantasy is typically a difficult concept for autistic children to grasp.  Add to that her disinterest in most toys or anything which could be wrapped in paper with a bow and you have a huge part of what most children feel excitement for lost on Emma.  Since she loves to ski, we plan to spend tomorrow skiing with her.  We have a number of Christmas presents wrapped and under the tree, a Christmas stocking jammed with little gifts she may well reject or if she continues as she has in the past, will never even open.

Two Christmases ago we joked, after all her presents remained under the tree unwrapped, we would just save them and put them back under the tree the following year.  Our son, Nic, was justifiably horrified by both our jokes and the fact she couldn’t have cared less.

“Can I have them?” he asked.

“Nic, I guarantee you will not want the presents we’ve chosen for her,” we said.

“Well can I just open them at least,” Nic replied, unconvinced.

The following year we unpacked our suitcases and stored them in a little room upstairs where the children have stuffed animals and books.  There, in a pile, were Emma’s unopened gifts.  I felt sad, seeing them there, not because I want my children to be attached to things, but because it represents a lack of neuro-typical development.

Just as we always have a place setting at the dinner table for Emma, despite the fact she has not and will not, eat anything we prepare, unless it’s cupcakes or pudding for the past five years, we continue to have some presents for her under the tree every Christmas, just in case one day, one year, she decides it’s worth her time to see what’s under the wrapping paper.

Christmas is obviously representative of much more than giving and receiving gifts.  For Emma we must find other ways to express our love and appreciation, ways she can understand and recognize.   Perhaps the best way, is to do the things she loves with her – skiing, silly games, singing nonsense songs and just being with her.  Sometimes it takes a little girl with no interest in material possessions to remind us of what Christmas is really about.

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Milestones

Posted on December 23, 2010 by | Leave a comment

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

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

“Okay.”

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

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

“Hi Em!”

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

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

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

“You love your Muzzy, don’t you Em?”

“Yes,” she said.

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

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

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

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

After a pause Emma said, “Girl.”

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

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

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

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

“Yes!”

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

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Our Tenth Anniversary

Posted on December 22, 2010 by | Leave a comment

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

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

“Emmy, what’s going on?”

“I need help!”  she cried.

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

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

“Emma, it’s okay,” Richard said.

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

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

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

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

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

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

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

“Em do you have to throw up?”

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

“Where does it hurt, Emmy?” I asked.

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

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

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

“Okay,” she said.

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

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

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

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

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

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The Aspen Carousel

Posted on December 21, 2010 by | 1 comment

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

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

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

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

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

“It’s too small,” Emma agreed.

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

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

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

“Go on the Aspen carousel,” Emma insisted.

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

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

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

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

“You mean at the Rec Center?”

“Yes,” Emma confirmed, nodding her head.

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

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

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

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

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

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All Together

Posted on December 20, 2010 by | Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Yes.  Just a little later.”

“One minute,” Em said.

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

“Later,” Emma said with finality.

“Yes.”

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The Next 32 Hours

Posted on December 15, 2010 by | 1 comment

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

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

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

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

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

“Yes,” we respond.

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

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

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Priorities

Posted on December 14, 2010 by | Leave a comment

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

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

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

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Disconsolate

Posted on December 13, 2010 by | Leave a comment

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

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