Category Archives: Parenting

Snow Day

Our son Nic has been anticipating this day ever since a month ago when a snowstorm was predicted, but never arrived.  When he woke this morning he had a huge grin on his face.  “It’s a snow day!?” he half asked, half shouted with glee.

“Yup!  It sure is,” I smiled at him.

“Yes!” Nic said, pumping his fist in the air.

“Hey Em,” I said, looking over at Emma who had returned to the comforts of her own bed, having gotten into ours earlier.  “Are you excited it’s a snow day?”

“No school bus,” Emma said in a worried tone.

“That’s right.  No school bus.”

“It’s a snow day!   Do you know what that means, Em?”  Nic asked.

“Yes,” came Emma’s reply.

“Really?  What does it mean?” I asked her, curious to know if perhaps she’d picked up on some of Nic’s excitement and had overheard our explanation that Mayor Bloomberg had declared it a snow day.

Emma snuggled deeper under the covers and said nothing.

“It means there’s no school today because of the snow storm,” I told her.

Interruption alert

I wish to take this moment to say – when we received the THREE phone calls this morning at 5:00AM informing us Mayor Bloomberg had officially declared today a snow day and as a result all public and private schools are closed, I muttered something derogatory about New York City being wimpish and if they wanted to see snow, they should really take a look at what constitutes a “snow storm” in Colorado.  And then fell back asleep feeling more than a little self righteous and indignant.  Upon waking later when Emma crawled into our bed declaring, “someone turned the lights on outside”, I learned Central Park received 19” of snow over night.

“Wow!  Really?  That’s almost a storm by Buffalo’s standards,” Richard commented peering out the window.

When I told him what I was writing for the blog he said, “Yeah, you might want to temper your indignation.  That’s a lot of snow.”

Interruption over

“Yes!” Nic said again.

“No school bus,” Emma confirmed, nodding her head.

“Exactly.  No school bus, no school, no…”

“Stay home,” Emma cut me off.

“Yes, stay home,” I agreed.

“So what do you guys want to do today?” I asked.

Nic said, “Stay home” just as Emma shouted, “Go sledding?”

“Okay.  Stay home first and then sledding,” I suggested.

“Snow day,” Emma said.

“No Braid!”

Combing through the tangled knot that was Emma’s hair this morning, she cried, “I don’t like hurt.  Ouch, use brush.”  She grabbed the brush next to her and began brushing her hair.  Only Emma’s “brushing” her own hair consists of placing the brush arbitrarily on some portion of her head and pulling down, which is fine if her hair isn’t tangled.  If her hair is tangled, as it was this morning, Emma’s attempts to brush it, only serves to make it more so.

“Okay, Em.  I’m sorry, I didn’t mean to hurt you,” I said, plying the brush from her.

“It doesn’t hurt,” Emma responded.  Which meant it did hurt.

“Here, I’ll use the brush, see?” I said, being careful to not pull on her hair.  How about I make a braid today?”

“NO!  No braid.  Ponytail!”  Emma cried grabbing the brush again.

“Okay.  How about I make pigtails?” I asked.

“Yes.  Pigtails!” Emma said.  She made her hand into a fist and put each fist on either side of her head, indicating where she wanted the pigtails.

“Perfect.  I’ll do that,” I promised.  After I put the pink frilly hair ties in place I said, “Let me see!”

Emma turned toward me and tossed her head from side to side making her hair whip around.  With a huge grin, she shouted,  “Pigtails!”

“Oh Emma you look great.  I love those pigtails.”

“You’re so pretty!” Emma said jumping up and down.

“Yes you are.  Now let’s go brush your teeth.”

When we went into the bathroom, Emma looked at her reflection in the mirror.  “Look at you!” she squealed, grinning at herself.  “You’re so cute!”

As we left to catch her school bus, Emma carefully put her hat on over her pigtails, only the pigtails were so high on her head it made her look as though she had little horns.  I smiled at her as we got into the elevator.

Emma jumped up and down and waved her arms while making a kind of whooping noise, something she does when she’s excited.

“Are you happy?” I asked, smiling at her.

“Are you happy?”  Emma repeated.   After a pause, Emma shouted, “YES!”

Emma’s Birthday

Emma and Martin Luther King share a birthday.  It remains to be seen if they will share anything else.  Perhaps one day Emma will be a persuasive speaker perhaps she too will express her abhorrence of violence and injustice.  It’s impossible to know, as Emma is autistic.

Yesterday Emma turned nine.  She has a lifetime ahead of her to tell us what she cares about and how she feels about things.

On Sunday we had a party for her and despite my concern that few children were able to make it, it turned out to be lovely and Emma had a blast.  A number of our friends made the effort to come to the gym we rented for an hour and a half and afterward a group of us returned to our place for gumbo and birthday cake.  Emma was ecstatic – not so much with the gumbo, which she didn’t eat, but the gymnastics party, her guests, the birthday cake, complete with candles and song and all the attention.

Later, Emma disappeared into her bedroom.

“Mom!  Mom!  Look!” Nic yelled.

“You have to see this,” Richard said from the doorway into Emma’s bedroom.

There Emma was, sitting up in her bed, wearing a pair of brand new birthday pajamas, her head resting on a new matching pillow and a padded eye cover around her neck.

Emma wearing her new PJ’s

Several of us crowded into her room, like subjects attempting to catch the attention of a queen.  We “oohed” and “aahed” as she opened each gift presented to her one by one by her brother, Nic.

Emma feeding her new “Geneva” groovy girl

Emma Monday morning with her new baby doll

Now for most parents all of this must seem rather mundane and hardly worth documentation, particularly documenting to the degree we have.  But for Emma, this was a first.  It marked the first birthday she took any genuine delight in opening her gifts and once the gift was opened, took actual pleasure in playing with each present.  Emma sat happily in her bed, her admirers clamored around in adoration, Nic raced back and forth carrying each gift to her as if it were the Holy Grail itself.

And perhaps to Emma, it was.

Returning Home

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

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

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

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

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

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

“Mommy!  Mommy stay!”  Emma cried.

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

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

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

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

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

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

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

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

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

Emma turned away.  “Mommy come!”

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

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

“It’ll be okay,” I said.

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

Emma’s Birthday

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.

Dozer

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.

A “Conversation”

“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.

Going Home

“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.

Making Sense of It All

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.

The Good News And The Bad News

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.

Christmas

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.

The Next 32 Hours

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.

Priorities

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..

Bullying

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.

“Spitting? Nooooo! You cannot spit!”

“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!