Tag Archives: autistic behavior

Autism and Traveling

Yesterday we flew back to New York city.  Emma is a terrific traveler, content to stare out the window, look at her books and sing songs.  As long as she is able to sit in a window seat, she is happy.

On the flight from Denver to New York, which was already delayed by about a half an hour, we noticed a man speaking in a loud voice to one of the flight personnel.  He was a large man, well over six feet tall, with close cropped greying hair.  I couldn’t hear what he was saying, but it was clear he was unhappy about something, not unusual given the rigors of traveling nowadays.  But as he went on, I noticed a cadence to his speech that was familiar to me.

“Mom, what’s wrong with that guy?” Nic asked me as I watched the scene unfold.

“Don’t know, Nic.”

“Is he autistic?”  Nic asked.

“Maybe.  I’m not sure.”

It was at this moment that we were called to board.  The man, visibly upset and walking with a cane, boarded first.  When we finally settled into our seats, I noticed that same man was seated directly in front of me – in an aisle seat.   The usual parade of harried travelers filed along, as exhausted flight attendants urged everyone into their seats so that we could take off without further delays.  By the time the plane was airborne, we all began to relax.  At a certain point the man in front of me yelled out, “I can’t see out the window!  I can’t see out the window!   Excuse me miss, I can’t see out the window!”

It wasn’t clear who he was speaking to, but it seemed that the woman seated near the window in the row in front of him had pulled the shade down.  Someone then said, “It’s her seat, she can do what she wants.”

To which the man shouted, “I can’t see out the window.  I hate these aisle seats.”

For another hour or so all seemed to calm down until about an hour from our landing when the pilot announced we were in a holding pattern over Pennsylvania and would be for an indefinite period of time.  The pilot then went on to assure us that we had enough fuel for several hours so everyone should relax and he would keep us updated.  But the gentleman in front of me began to get agitated, asking the flight attendant what was happening, what time would we actually land etc.  She explained that we were in a holding pattern and couldn’t predict what time we would actually land.

After she left the man began to shout, “I can’t see out the window.”  People were muttering and saying things under their breath, while the poor man became increasingly upset.  At this point I leaned forward to the woman in his row seated next to the window and asked her if she would mind changing her window seat for his aisle seat.  I explained to her that I thought he probably had autism and was becoming increasingly upset by all the delays and needed to be by the window.  I told her my daughter (happily gazing out the window directly behind her, also had autism and needed to sit in the window seat too.)  The young woman complied and I asked her if she minded if I intervened by telling the flight attendant.  She said that would be fine.  I went to find the flight attendant who was discussing the situation with another flight attendant in first class.  I explained that I thought the man had autism and that my guess was he would feel much calmer if he could sit in a window seat and that the woman to his right had agreed to change her seat with him.

The flight attendant then returned saying to the man, “This nice woman has agreed to change seats with you.”

“I hate these aisle seats.  I told them at the gate I hate these aisle seats.  I was suppose to have a window seat.  I told them I was suppose to have a window seat,” the man said, now standing in the aisle of the plane.

Once he had reseated himself by the window, all was quiet with no further mishaps despite our over an hour delay in landing.

What I find most upsetting about this, is how it all could have been avoided.  The airlines, like so many, do not have any understanding of autism.  How hard would it have been to give this man a window seat as he requested at the gate?  When I went to the flight attendant and suggested he might have autism, she said, “Oh, yes.  He does.”  So it’s clear the airline had been made aware of this and yet, chose to do nothing to help this man.

Sometimes I feel as though I am yelling from the top of a very large building.  WHAT IS IT GOING TO TAKE ?   The lack of understanding around a condition that affects hundreds of thousands of people is mind boggling.   The scene we witnessed could have been avoided had the airlines and it’s personnel had even a vague understanding of autism.

For more on autism and traveling with Emma, go to:  www.EmmasHopeBook.com

Deficits and Assets – Autism

It is easy to see what’s wrong – with the world, with other people, with ourselves.  When Emma was diagnosed with autism we were told about all that was “wrong” with her.  Her deficits were listed with great care:  Her eye contact was weak.  She showed little interest in interaction with others, she didn’t point, she didn’t ask questions about others, she showed little awareness of others, she seemed oblivious to others pain or feelings.  Her verbal skills were delayed, her fine motor skills were delayed, her ability to play, to project, to engage in any sort of fantasy or pretend play was almost non-existent.  The list went on and on.

But what of her assets?  What about all the things she did that showed tremendous creativity and intelligence?  Where was the balance in her many and varied evaluations?

When Emma went to a Special Education Pre-School I met a little boy who couldn’t have been older than three.  He was pointing to all the signs in the building and reading them.  I exclaimed to one of the therapists standing nearby how incredible this seemed to me.  She then told me he was hyperlexic and that they discouraged him from reading as it wasn’t “normal”.

I have never forgotten that.  Here was a child with an unusual ability.  A talent that could be used to further his education and perhaps interests and yet it was being discouraged.  Is that what we want from our children – to be “normal”?  What do we sacrifice in our attempts to “fit in”, to adapt, to be like everyone else?

Emma has a beautiful voice and a love of performing.  If we have guests over she asks to “sing a song” for them as she did last night.  Sometimes she needs to be reminded that the song must eventually end as she can get into a loop, singing the same refrain over and over again.  She hasn’t mastered the whole concept of “losing ones audience”.  But we encourage her singing and desire to perform just as we encourage Nic to practice his Alto Sax and the piano.  Emma has a great many assets, things she loves doing over and over again.  With Nic we use the word “practicing”, with Emma we say she is “perseverating.”  Yet in her perseveration Emma is practicing as much as Nic is.  The difference is, Emma will do the same thing over and over again for hours, whereas Nic will practice for 20 or 30 minutes and move on to something else.

Last night as guests began to arrive, Emma was upstairs in her “study room”, sitting on the floor in her party dress writing.  When I went upstairs, this is what I saw.

She was talking to herself and picking up each piece of paper then reading it before placing it back down and moving to the next.

As we had run out of lined paper, she had made the lines herself, before writing the sentence – The kids can hug.

Now this scene isn’t exactly “normal”, on the other hand very little in our household is.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Emma’s Struggle with Pronouns

I have written about this before – Emma’s continuing struggle with using the correct pronouns.  It is something one sees in children on the spectrum.  Pronoun confusion, lack of pointing at an early age, a lack of engagement or initiating play, these are all warning signs in small children and almost all children diagnosed with autism share at least a couple of these.

Emma uses the word “you” when speaking about herself, but also when speaking about someone else.  It’s a word she uses for anyone, herself included.  As in “You want to go on the 4-wheeler?”  Someone who doesn’t know Emma would assume she’s inviting them to go with her and the response is often an enthusiastic, “Yes, I do want to go on the 4-wheeler!”

Emma, then happily runs outside, turns the engine on and waits for the unsuspecting person to join her.  This scenario actually happened with our cousin Max, whom neither of the kids had ever met until last summer.  But when Emma says things like, “Bye Emma!” to the person she has just been introduced to, things get a bit more confusing.

So last night when Richard and Emma picked me up from my store in town, she said, “No not going to see July fireworks.  They’re too scary.  Mommy has to pick you up.”  Then she paused and said, “No, Mommy has to pick me up!”  We were surprised and pleased.

“That’s right Em!”  And then as an aside to Richard, “Wow!  That was pretty great.  She corrected herself!”

Emma then repeated herself several times, “Fireworks too scary.  Mommy will pick me up.”  She looked from Richard to me proudly.  “Good talking!” she said, before leaping into the car.

During the ride back to the ranch she tried various variations on this theme.  Each time using “me” correctly.

It was a proud moment for all of us.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

Empathy and Autism

My thinking on this topic has changed since I last posted about Emma and Empathy over a year ago.  I am not convinced that Emma “has a terrible time figuring out what another person is thinking or feeling.”  Today that is not something I would say.  I often wonder if Emma feels things in the extreme rather than not at all.  I have read a great many articles written by people on the spectrum who describe their feelings and responses to other people’s emotions as being too much for them.

One young woman, Dora, says:  “I often feel things too deeply or have too much empathy and have to run away, not because I am callous, but because I feel so strongly it causes my brain to shut down or freak out.”    Her statement is similar to another woman with autism, who’s amazing mother, Clara Claiborne Park wrote two books about her daughter, Jessy.  She describes how Jessy would cover her ears and could not tolerate certain words because they were “too good”.

When one of us is upset and Emma appears to completely disregard our emotional state, whether by ignoring it or making sympathetic comments, which to our ears strikes us as insincere, I have to question whether our interpretation is accurate.  How can we know what she is really experiencing?  We cannot.    I choose to believe Emma is deeply sensitive to her  own and our emotions, but just as she has trouble expressing herself verbally, she may express her feelings differently as well.

Dora goes on to point out:  “The notion that we don’t have feelings frees up people to commit atrocities against us without accountability.”

When I hear neuro-typical people discussing autism I am often surprised by the conclusions they come to.  How differently might we treat someone if we believed them to be fundamentally unintelligent?  How would we speak to them?  What things would we say because we believed they have a low IQ, lack empathy, could not understand us?  How would we treat them as a direct result of our assumptions?   If we decide a child’s behavior is a form of manipulation or because the child is “spoiled” or because they “think they can get away with it”, do we not treat them differently?  Isn’t it true we can behave in some pretty horrific ways when we make assumptions about other’s actions?  Isn’t it easy to rationalize our behavior when we’ve decided a person or child is “dumb”, “less than”, “inferior”, cognitively unaware”?  And what if all those assumptions we’ve so quickly and easily come to are completely wrong?  How does our response stand up under further scrutiny?  Have we not behaved with callous disregard?  Have we not completely “disregarded” their “feelings”?

For more on Emma’s journey through a childhood of autism and her relationship with her brother, Nic go to: www.EmmasHopeBook.com

Emma in Union Square Park – Summer, 2011

Searching

In three more days I will be home.  Home with my two children, Nic and Emma, my husband, Richard and our black cat, Merlin.  Everyone but Emma and Merlin understand that I’ve been away for so long because of work.  I guess I should rephrase that – I don’t actually know whether Emma understands I’ve been away because of work.  Perhaps the reason why I’ve been gone so long is meaningless to her, she just knows I’m not there.  But on Friday when she returns home, I will be waiting for her with open arms.  I don’t like being away this long.  I don’t like having so many miles between me and my family.

When I spoke to Emma on Sunday she said, “No, you cannot spit.  If you spit Mommy will leave.”

“Oh Em, you didn’t spit.  I didn’t leave because of anything you did,” I said.

“There is no spitting!”  Emma shouted into the phone.

“Okay Em.  I’m really glad to be speaking with you, tell me about your day.”

“No you cannot spit.  There is no spitting or Mommy leaves.”

“Sweetie, tell me about your day.  What did you do today?”

“No spitting.  Bye Mommy,” she said before casually putting the phone down and walking away.

Sometimes one waits then, hoping the chaos that constitutes our life in New York city isn’t so much that everyone forgets about the phone and the person on the other end.  Sometimes one has no other choice than to eventually hang up.  Once, after hanging up, I tried to call back only to receive a rarely heard busy signal.

But this time after a few moments Richard returned.  “Do you think she thinks I’m gone because I’m angry with her?”  I asked.

“No.  I heard her, I don’t know what that was about,” he tried to reassure me.

Being away is like entering an alternate universe.  It’s familiar, a bit like seeing an old friend from high school.  It’s easy to fall back into a kind of routine, but my children and husband are always there in my head.  I am here to work, so I do.  But I still have time to socialize with friends, Sunday I even took the entire day off and went for a much needed long, long walk with a friend.  I can say yes when someone asks me to have a coffee with them.  My life is completely different here from my life in New York.  In many ways it’s wonderful, calm, relaxing, yet I’ve been weepy ever since I arrived.  Being able to have feelings and have the time to look at them, talk about them, it’s all a luxury really.  One needs the time and space to indulge them.  So I’ve been blogging about some of those things – the existential quest that most of us feel at certain times in our life, the searching.  That too is something that needs time, a certain silence to be able to fully indulge.

I have no answers, I continue to search though.

For more on my family and Emma’s journey through a childhood of autism go to:  www.EmmasHopeBook.com

The Bakery

Emma is fussy about what she will eat and drink.  The type of food is sometimes less important than the packaging.  If the packaging changes or varies, even a little the item is rejected.  As with so much in autism it is all about regularity and routine.  Emma is completely thrown by the unexpected when applied to things she is accustomed to.

For the past two years Vanilla Milk from Horizon has been on Emma’s top five list of favorites.  It’s the little milk in a white and purple box with plastic wrapped straw glued to the side.   Except Horizon changed the packaging about three months ago – the colors remain the same, as do the graphics, size, shape and even the little straw. What has changed is they no longer use a coating to make the little boxes appear ever so slightly glossy.  The boxes are now a bit flatter looking.  Honestly, it wasn’t until Emma stopped drinking them, that I realized they had changed.

When we arrived in Aspen, we had a case from Christmas in the mudroom with the original packaging and Emma immediately grabbed one.

“Vanilla Milk!”  she said with pleasure.

We are nearing the end of that case and so she will boycott them once again.  Not that I care much as they are one of the least healthy things she consumes, but I do mind that she won’t eat the Cheerios we buy here, haven’t figured out why.  We bring her special bread with us, which we cannot get out here and her jam, so it was with some dismay when she refused to eat any of those things this time out, as well.  Last night I asked her what she wanted for dinner.  I told her what I was having and asked if she wanted some.  She always answers no, so it wasn’t a big surprise when she again said, “No?” as though it were more of a question, than a statement.

“Okay, so what would you like?” I asked.

“Bread,” she announced and handed me two pieces of her bread, which she had buttered and placed together, like a butter sandwich.

“Oh!” I said with surprise.  “You don’t want it toasted?”

“Yes.  Toast.”  Emma said.  Then she handed the bread to me and said, “Put it in the bakery.”

“In the bakery?” I repeated, looking around, wondering what she meant.

“In the bakery?” she said again gesturing at the oven.

“Oh!  You mean the oven.  You want me to put it in the oven to warm.”  I am often amazed by Emma’s creativity in her choice of words.  She has seen me bake bread in the oven.  She knows bread comes out of the oven and more often comes from a bakery.

“Yes.  Make it nice and warm!” Emma said.

“In the oven,” I said.

“In the oven,” Emma repeated.

“We have to heat the oven first and then we can toast it.  But we have to get a cookie tray to put it on, otherwise the butter might drip out,” I told her.

When her bread was done, I opened the oven.

“You have to stand back,” Emma said sternly.

“It’s okay Em.  Here, I’ll take it out and you can take it to the table.”

After Emma ate her bread she said, “Another bread from the bakery?”

“Yes.   We can do that.  You make it and I’ll put it in the oven.”

“Make it nice and warm,” Emma said.

“It’s Mommy!”

Every evening Joe, Emma’s therapist, and Emma pick me up from my store in town.  Emma pushes the door open and, upon seeing me says, “Hi Mommy!”  Then she points at me and says, “It’s Mommy!” as though this were the first time she’d seen me in a very long time.

“Hi Emma!”  I respond.  “I’m so happy to see you!”

Often she’ll stand back from me.  Looking at me with an expression of pleasure mixed with something else I haven’t been able to decipher, she usually says again, “It’s Mommy!”

It’s almost as though she doesn’t expect to find me there each evening.  As if she thinks I might be somewhere else and my presence is just a fluke.  Or perhaps it’s that she’s not used to seeing me at the store.  We’ve only been open a few months now and normally Joe, Emma and I are home in New York where I go to my studio each day.

After introducing Emma to whoever might be in the store when she comes, I almost always ask her, “What did you do today?”

“Go back to Granma’s house with Mommy?”  Emma will answer with an edge of anxiety.

“Yes, I’m coming with you,” I reassure her.  “What did you do today?”

Typically Emma will respond with a list of things she did.  Though this is by no means a comprehensive list.  Many times it’s not clear whether she is stating what she actually did, what she might have done in the last few days or what she wanted to do, but didn’t have time to.   “Really?”  I’ll say.  “You went bowling, sledding and skiing?”  I’ll ask, looking to Joe for confirmation.

Joe likes to let Emma speak for herself and so he usually will wait to see if she responds appropriately.  If she’s just said something completely outrageous he’ll interject, but more likely Emma will correct herself on her own as she did last night.

“No skiing,” she said.  “Bowling and wheel carousel.”

“Oh!  Did you find a real carousel?” I asked, wondering if this was a new addition to the Aspen area.

“Yeah!  Wheel carousel!”  Emma responded.

“Where is it?” I asked Joe.

“It’s a metal wheel in El Jebel,” Joe explained.

“Oh, like a merry-go-round?”

“Yes.”

“Did you have fun?” I’ll asked.

“YEAH!”  Emma said.  She almost always will respond to that question with enthusiasm.  No one can accuse Emma of not being happy.  She spends the greater part of her day in a state of bliss, always has.

When we drove home Emma waited in the back seat, allowing me to get out first to collar the dogs, before vacating the car.

By the time she appeared in the kitchen I had hung up my coat and was talking to my mother.  “It’s Mommy!”  Emma said, pointing at me as though she hadn’t just spent the last twenty minutes with me.

Then she held out her arms to me, indicating that she’d like me to hug her, which I never pass up the opportunity to do.

Routine

Emma is not alone in liking her routines.  She is most comfortable when she knows she will do something she enjoys or is use to.  What separates Emma from the rest of us is that instead of being able to adjust when her routine is disrupted, she is thrown completely off-balance to a degree that often catches even us by surprise.

Last night Emma went through her nighttime routine of getting ready for bed.  After her teeth had been brushed she came to find me in the back where I was reading.

“Just five minutes,” she said as she got into our bed.  “Just five minutes with Mommy.”

“Hey Em.   Okay five minutes, then you’ll go back to your bed,” I agreed.

About ten minutes later I looked up from my book and realized Emma had fallen asleep.  There was a moment when I wondered if I should just let her sleep and try to carry her into her bed later, but she’s gotten so big, short of carting her out on a gurney, this is no longer an option.

“Hey Emmy,” I whispered as I put my arm around her.  “You have to go to sleep in your own bed.”

She resisted me.  “Stay here with Mommy,” she muttered.

“Come on.  I’ll take you back to your bed.”  I held out my hand and waited for her to get up.

“Go with Mommy into the other room,” she said.

Ever compliant, she allowed me to lead her back to her own bedroom where she got into bed.  “Mommy sing a song?”

Having sung her a lullaby I went back to my book, relishing in the fact Emma was back asleep in her own bed without a fuss, something I am still consistently surprised by.

Half an hour later, cries from Emma’s room could be heard.  She tearfully offered us her flashlight, a gift from my brother, which glows in the dark.  “It’s broken,” she sobbed.

We tried replacing its batteries with no success and finally placated her with promises of repairing it in the morning.

Another half hour went by and then there Emma was, like a spectre, at the foot of our bed.  “Mommy come!” she cried.

This went on for about an hour.  Emma would tearfully return to her bed, one of us would sit with her for a few minutes, tuck her in, say good night and leave, only to have her reappear ten or fifteen minutes later, crying about something else.  It’s like watching a pin ball ricocheting around, from one thing to the next until eventually Richard took her back to her bed and for whatever reason, this time she was able to go back to sleep.

Emma is sensitive to the slightest variation in her routine.  It is something we know about her and do our best to accommodate.  When she was little we use to mix things up on purpose.  We tried to avoid routines with the mistaken idea that if she were not allowed to have any routines, she would learn to adapt to change more easily.  But this proved wrong and impossible.  Emma would go along with things as chaotic as they might be, but the instant we did something, anything more than a few times, she would become fixated on doing the same, over and over again.  In addition the children’s school, our own work requirements, all need a schedule, as do regular bedtime, meals etc.

There are a number of studies being done on the link between autism and obsessive-compulsive disorder.  I don’t know if Emma has a comorbid diagnosis of OCD, but until one witnesses such behavior, it is almost impossible to explain the panic, the sheer terror, disruption causes them.

The Comedian

Emma is a bit of a clown if she’s given any encouragement.
The other night, Emma nodded her head, while pursing her mouth in a kind of lopsided pucker and said, “I know.  You can’t go on the bike carousel.  It’s closed.”  Her tone was one of sorrow, as though she were sympathetic to the situation, but that it was ultimately beyond her control.  “I know,” she repeated.  “You have to wait.  It’s too cold for the bike carousel.”

Forget that I don’t know what “bike carousel” she was referring to.  The only one I know of is in Battery Park and it most certainly was too cold and snowy to go there.

Emma often carries on whole conversations with herself playing the role of child wanting to go somewhere and benevolent authority figure telling her she cannot do whatever it is.  There is a kind of mimicked sadness as she tells herself she cannot do something and even provides herself with perfectly plausible reasons why whatever it is, can’t be done.  It’s what they call in tennis, playing both sides of the net.

“I want to go on the bike carousel!”  Tone high-pitched, demanding, her face animated even lit up with anticipation and then the response, “I know.”  Sadness, apologetic, followed by the reason why this is impossible,  “You cannot go on the bike carousel, it’s too cold outside.”  Then she adds the facial expression with her mouth twisted to the side, puckered lips and the nodding of her head – it’s almost impossible to witness this performance and not see the comedy in it.

The other day we were all in the elevator with Emma when she went through a similar routine,  “I’m sorry,” she said.  “You cannot go on the swings.  That swing is for babies.  You’re too big.”  This last was said with a stern, though sympathetic tone.  “I want to go on the big swing,” this was uttered in a higher pitched voice.  “I know,” she said, nodding her head and giving the look, which made all of us start laughing.

“Emmy, you can’t go on the baby swing!  It’s too cold!” we said.

“I know,” she said sadly, nodding her head again.  It seemed there was a tiny hint of a smile though as she said it.  “You’re too big!”  Then she laughed.

“Em, make that face,” Nic prompted the other night.  He was referring to her puckered lopsided nodding of the head face.  But instead she just looked at him.

“Nicky!” she said sternly.  “Nicky!  Stop talking!”

“Hey Emma, go like this,” I encouraged, mimicking her expression.  When she finally complied she did it and then seeing all of us laughing she joined us and began laughing too.  “I love that expression, Emma.  You’re funny,” I told her.

“It’s funny,” she said.

On another occasion Emma burst into hysterical laughter for reasons none of us could decipher.  “Hey Em.  What’s so funny?” I asked.

“Justice!  Justice slammed the door,” she said before collapsing into peals of laughter.

“Was Justice being funny?” I asked, hoping to get more out of her.

“Yes!” But the moment was over and she wandered off.  Whatever scenario she was remembering, it was one we couldn’t share with her.

A few weeks ago when Richard and I went to her classroom with cupcakes to celebrate her birthday with her classmates we met Justice.  He and Emma sat together during story time.  On occasion one of them would reach over and stroke the others hair.  It was adorable.  Clearly they feel tremendous affection for one another and it was wonderful to see.  Then Justice began singing in a high pitched gravelly voice, making the teacher admonish him for making her ears hurt, as he and Emma laughed and laughed.

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.

“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!

Emma’s School Bus

Emma came home this evening and said, “Sad.”  This was in answer to my question, “How are you?”

“Why Emma?  What happened?” I asked.

“Emma have to go on the school bus.  Emma make you sad,” she said, frowning and nodding her head.

“What do you mean?” I asked kneeling down so my eyes were on the same level as hers.

“You have to wait!  You have to sit!  Emma cry.  Emma bite yourself,” Emma looked directly at me as she said this.

“Why do you have to wait, Emma?” I asked.

“Want to go to Becky’s class.”

“Did your bus come to school early?”  I asked trying to piece together what Emma was trying to tell me.

“You have to wait.  Want to go to Becky’s class.”

“Did someone tell you, you had to wait?” I asked.

Emma nodded her head.  Shouting and pointing her finger she said, “I told you! SIT DOWN!”

At this point I was more than a little alarmed.  “Emma, who said that to you?”

Emma didn’t answer at first, then nodded her head.  “Yeah,” she said in a sad voice.

These kinds of responses from Emma only highlight how difficult it can be to communicate with her and understand her.

“Did the bus driver say that to you or the bus matron?” I asked, knowing these were the only two people on the school bus.

“Bus driver said – I told you NO!  Sit down!”  Emma said in a loud stern voice.  Then in a quieter voice she said, “Emma cry.  Emma so upset.”

I think it was at this point in the conversation when I went to the computer and wrote an email to our lawyer, ccing Richard and Emma’s head teacher, the head master and social worker.  I have no idea what kind of recourse is available to us and so we need advice.  What I do know is that we have had to deal with the Office of Public Transportation since Emma began going to school five years ago.  Emma’s bus arrives between 7:20AM and 7:40AM to take her some fourteen blocks to her school, which begins at 8:30AM.  When I called to complain about the early pick up time, insisting that it cannot possibly take an hour to drive fourteen blocks even if three of them are cross town blocks, I was told the bus picks up many other children who go to several nearby special education schools before Emma is eventually dropped off at her school.  In other words, Emma is driven around the city for close to an hour.  For years now I have questioned the logic in this and have been:  hung up on, yelled at or told this is the way the route is mapped out and there’s nothing that can be done.

A few years ago I was determined to have the bus change their pick up time from 7:15AM to something later.  For two months I went back and forth with various people at the Office of Public Transportation, sometimes calling three and four times in a single day.  By the time they finally agreed to change Emma’s pick up time the semester was coming to an end and we started anew with a new bus company and driver after the break.  Which is another bizarre thing.  Are special needs children the only ones who have a new bus company, new bus driver, new bus route every three to four months?  How is it that neuro-typical children in New York City have the same bus for the entire school year, often for several years in a row?

In the past few weeks I have noticed when the bus pulls up that there seem to be only one or two other children on the bus as was the case Thursday morning, no other children.  Emma was the only child.  So unless the bus is picking up children after Emma, it is driving fourteen blocks (which should take about ten minutes depending on traffic.  If the bus arrives early, (picks Emma up at 7:25AM drives ten minutes to her school, getting there by 7:35AM) it sits idling outside the school until the school’s doors open at 8:25AM.  Which means (if I am correct) Emma is waiting in the bus alone for almost an hour.

What makes all of this particularly horrifying to me is we put Emma on the school bus and cross our fingers she will be treated well and with respect, she will arrive safely at her school in a timely manner, but we cannot know what really goes on because Emma cannot tell us.  We have to trust.  And at this moment I no longer trust.

Emma’s Language

I am lying in bed reading.

Emma comes running in looking for me.  She stops when she sees me.  Huge smile.  In her hand she has two pieces of what are left of her blanket she calls“cokie”.   She drapes the smaller piece on my arm and says, “That one Binky, mine!  Ohhhhh!” She runs to the other side of the room.

“Emma!” I say in an animated voice.  “Are you letting me have your cokie?!”

“Wait a second.  That one cokie,” she says holding the larger piece of her old blanket in her hand.  She jumps up and down.

“Is this piece mine?” I ask.

“That one Binky.  Awww…” She says in her sing-songy voice.

“I have Binky and you have Cokie?” I ask.

Emma twirls around holding her blanket.  “What’s boy?”

I put my ipad away and sit up.  “What is boy, Emma?”

Emma seems to not hear me.  “What’s ee- day? Boy gone.  Yes!” She says while continuing to twirl in place.  “Booooooy..” She says the word as though it were several syllables.  Her voice rising in the middle of the “o” sound and coming down at the end, stretching it out, playing with the sounds.  She pauses and stops twirling.  “Ee-day is gone.” She begins to twirl again.

“Who’s ee-day? “ I ask.

“Ee-day move away.  Ee-day is gone.”

“Emma, do I know ee-day?

“Ee-day move away.”  She begins to jump up and down.  “That’s right.  Boooooy, ee-day gone.  Ee-day is gone.  Ee-day is gone.”  Emma stands still and continues twirling a piece of her hair around her finger.  “What’s watch your finger?  What’s boys?  What’s watch your?  What’s watch, wash your finger?”

“Are you saying watch or wash, Emma?”

“Booooy – wash your finger’s gone,” Emma sings the words.

“Emma, is it wash – like washing soap or watch, like you watch Elmo?”

Emma says nothing.  She stands still with her head cocked to one side and twirls the lock of hair. Twirl, twirl, twirl.   She stares at the piece of hair as she twists it around.

“Or are you saying watch out!” I ask.

Emma looks at me, “WATCH OUT!  WATCH YOUR FINGER!  BE CAREFUL!!”  She shouts while jumping up and down.  Then she begins to laugh.

“Did someone at school tell you to watch your finger because it might get caught in something?” I ask.

“You have to be careful.  Watch your finger!” Emma says.  She runs over to me and yanks away the piece of her blanket still draped on my arm.  She runs away and then comes back and gently places the scrap on my head.  “Ahh, it’s your Binky.”

Earlier that day Emma was taking a shower.  “Emma make sure you use the soap,” I tell her.

She dutifully washes her body with soap.

“Now make sure you rinse your body off.”

Emma stands just to the side of the spray, soap covering her.

“Wash the soap, Emma,” I say.

Emma holds the bar of soap under the water.

Okay, that makes sense, my mistake, I think.  “No not the bar of soap, the soap on your body,” I explain.

Emma moves under the spray and proceeds to wash the soap off of her body.

I don’t know what Emma hears or what goes on for her when she is being spoken to.  I do know she takes things literally, as when I told her to wash the soap, meaning wash the soap off her body.  Often, as in the first conversation, Emma seems to be working through something, though it’s not clear to me what.  Either that or she likes the sounds and is playing with the sounds of the words and their various meanings.  My guess is there is much more going on than I am able to figure out.  I am almost always perplexed by Emma’s language.  It is foreign to me and while I am learning to speak a little of it, I have a long, long way to go.

Rules

Emma can be very strict.  She is a stickler for rules.  Merlin (see yesterday’s post) is not supposed to jump up onto the counters or dining room table.  If he does, Emma shouts, “Merlin!  Get down!”  Even if he hasn’t jumped up on the counter (yet) Emma will remind him, “Merlin!  You may not get up on the table.”

If we have a vase of flowers on the dining room table Emma will repeatedly warn Merlin (whether it applies or not) “Merlin, kitty, you cannot eat the flowers!”  Then she’ll laugh.

These are all things she has heard us say at some point and Emma is a terrific mimic.  She will not only repeat the things she hears us say, but she will mimic the tone.  There’s a word for what she does.  It is – echolalia – common among autistic children.  Echolalia is the parroting or echoing of sentences and phrases heard.   Emma does not make the sorts of linguistic mistakes commonly heard in young children.  She does not say things like – I bringed it to her – something often heard from young neuro-typical children as they try their best to navigate the English language.  On the other hand Emma will say – Bye Emma! When saying good-bye to someone, whose name is definitely not Emma.  It is what she hears them say to her when they or she is leaving.  Why would she say anything else!?  To Emma “Bye Emma” means a parting of ways.  Or, as in the case of a dinner party we had a few months ago, Emma felt it was time for everyone to leave, she announced – “Dinner is all done!  Bye Emma!”  When our guests, understandably confused, said, “Oh!  Are you going now?” but did not themselves show any sign of leaving, Emma began bringing them their coats, saying, “Bye! Bye Emma!”  while vigorously waving her hand good-bye.  Needless to say she cleared the place out within minutes, despite our reassurances that it was not time to go yet and wouldn’t they like to stay and have some coffee or tea.

For Emma, however, we had eaten, she had patiently waited while this occurred.  She knew there would be dessert after which she would be allowed to blow out the candles on the dinner table while singing “Happy Birthday” (Any party is a birthday party and remarkably some guest almost always is about to have or has just had a birthday – so it confirms Emma’s ‘party = birthday party’ theory.)  Once Emma has sung Happy Birthday, usually several times and with all of us joining in for the third or fourth “last time” rendition – it is time to go to bed.  Emma has a difficult time understanding that we may not be ready for bed.  We may want to move into the living room to talk, have some tea or coffee and enjoy each other’s company.  This, for Emma, is not how it should be, it is her bedtime now and so it should be everyone elses too.  This sort of flexibility does not fit into her “rules”.  The guests should leave and if they do not, then Emma must remind them.

When Emma was beginning to talk she did not say single words, but whole sentences.  See previous post – “Emma at Ten Months Old”.  As Emma grew older, she would repeat things she heard others say.  But the things she latched on to were things said with a great deal of emotion, or, as Stanley Greenspan used to say, “high affect”.  Sometimes these comments were in context, but other times they were arbitrary.  A dear friend of mine who has two children just a bit younger than mine admonished her son in the playground one day while we were there.

“Rogan NO!”  She shouted, as her son dashed toward the gate leading out onto 10th Avenue.  Emma, for the next four years mimicked her in all sorts of situations.  Often it was when she wanted to go somewhere, but knew she shouldn’t, but just as often it was arbitrary.  Emma would shout, “Rogan NO!”   Sometimes she would add  “You have to come back!”  And sometimes she would just use the short hand version  “NO!”  But we knew from the way she said it, the tone she used who she was mimicking.  She had captured the voice perfectly.  A few years ago we ran into my friend with her children in the park and Emma upon seeing her, immediately said, “Rogan, NO!”  Fortunately my friend has a good sense of humor and didn’t take offense.

Emma does the same thing with another friend of ours.

“Jack!” Emma will shout in a stern voice.  Then “Jack!  Jack!  Jack!”  Said in rapid succession.  She captures the child’s name and the anxiety ridden pitch perfectly.  At Nic’s birthday party a few years back, Emma, upon seeing Jack’s father, started shouting – Jack!  Jack! Jack!

“I guess that’s how I sound, huh?” The father said, looking slightly embarrassed.

How to explain?

For Emma, rules help her cope in a world run riot.  Rules provide sameness and from that, Emma derives comfort.  Though Emma has been known to question some of the rules she does not like.  “We cannot make pancakes,” Emma will say, knowing it is a school day.  She hopes maybe we will make pancakes anyway and this is as close to a question as we often get.  But once confirmed, “No we cannot make pancakes this morning.  It’s Wednesday,” one of us will say, Emma will begrudgingly accept this.  It is our rule after all.

“Sleep, wake up, sleep wake up, sleep wake up, pancakes!” Emma will respond.

“Yes.  That’s right.  Pancakes on Saturday and Sunday.”

“Make pancakes with Mommy?”  Emma will say with a sly grin, trying one last time to see if this ‘rule’ can be suspended if for only one day.

“Pancakes with Mommy on Saturday.  Today is Wednesday.”

“Okay,” Emma will say.

Go Away, Big Green Monster!

This photo was taken a few years ago at the local bookstore near where we live.   Emma has never shown much interest in books.  When she was a baby she would squirm and wimper when I tried to read to her.  As she grew older, she allowed me to read to her as long as she was able to hold the book and turn the pages.  Often she didn’t wait for me to finish reading before turning the page.  Much the way she flips through photographs, so quickly it’s hard to believe she is really able to see what and who are in the photo, she does the same with books.  I often wonder if Emma sees in patterns.  In other words, her brain picks up the entire scene and creates an instant pattern, allowing her to “see” the image instantly, any variation is immediately recognized.  I don’t know that she sees in this way, but I wonder.

Years before this photo was taken, I took Emma to the bookstore.  She couldn’t have been older than three.  She wriggled out of the stroller and ran to the back of the store.  We hadn’t been inside this particular bookstore for at least six months.  I followed Emma, calling out to her, “Emmy, where are you going?”  As was typical, she ignored me and kept running.  To her left was a floor to ceiling bookcase, filled with large picture books.  Emma attempted to scale the bookcase.

“No! No!  Emma!”  I cried.  “You can’t climb that.  What do you want?”

Emma jumped up and down, making noises.

“Is there a book you want to see?” I asked, looking at the shelves for a familiar book, which she might like.  Emma doesn’t like new books.  Whenever we are in a bookstore and I offer a new book, one that she hasn’t seen before, she shakes her head no.  Then goes over to a book she knows and pulls it from the shelf and hands it to me.  A few of her favorites:  “Chicka, Chicka Boom Boom”,  “Gossie”, “Gossie and Gertie”, “Brown Bear, Brown Bear” etc.  On this particular day she wasn’t interested in any of those books.  She was determined to climb the book shelf.  I picked her up, bringing her close to the books so they were in her reach.  “Do you want any of these?”  I asked.  Emma reached above my head, so I lifted her higher.

On the second to highest shelf, at about seven feet tall, Emma pulled a single book by it’s spine down from the shelf.  “Is that what you wanted?” I asked.  I set Emma down on the floor with her new book.  The book was “Go Away, Big Green Monster!”  I had never seen the book before.  As I stood watching Emma flip through the pages, reciting each and every word, I felt a chill.  It was eerie.  Where had she seen this book?  Who had read it to her?  She knew every word of that book by heart and spent the next hour “reading” it over and over again.

When we returned home (with the book) I related to Richard what had happened.  “It was bizarre, ” I said.  “I mean have you ever seen this book?”

“No, really weird,” he said.  “Maybe one of her therapists has it.”

“But she never lets them read to her.  And how did she know where it was in the bookstore?  She ran straight to it.  The therapists don’t take her outside.”

“I don’t know.  It’s really strange,” Richard said, looking at me.

“It was the only copy, Richard.  She knew it from it’s spine.  It wasn’t like it was out on display.  And I haven’t taken her to that bookstore in months.  She immediately knew where to find it.”

During the following weeks I asked everyone who came in contact with Emma, but no one had read her or lent her the book.

After a few months I stopped trying to figure it out.  To this day, I have no idea how she found that book, or even knew of it’s existence.  It remains one of the many unsolved mysteries of Emma’s mind.