Category Archives: language

“Embrace-ness-ness”

Posted on April 14, 2011 by | 2 comments

For those of you who have not viewed the interview of Carly Fleishman, you should:  Autistic Teen Finds Inner Voice. (There is a 15 second ad that you must cope with, but the interview is well worth the annoyance of the ad.)

The clip is an amazing example of a severely autistic non-verbal teenager who finds a way to “speak” by typing on her computer.  What occurs as a result is profound with far-reaching implications for all of us.

A follower of  EmmasHopeBook, an English teacher of 7th graders, and I have been engaged in a “cyber conversation” regarding disabilities, “tolerance”, how we view intelligence etc.  She wrote me this morning regarding her english class:  “We’ve also been discussing the semantics of disability (and earlier in the year, racism and homophobia). The word “tolerance” has come up in class, and the kids actually hypothesized and agreed that it’s just not strong enough for the world they want to live in. There were some strong voices saying that they feel it is actually negative! One girl said that, to her, to “tolerate” someone or something means “OK, I’ll put up with this if I have to, not because I want to,” and then they universally decided that the ultimate goal they should be pursuing and activating for is something like equality, or, as the same girl put it “It’s something like ’embrace-ness-ness.’ ”

I love this.  We live in a world, populated by people whom we often judge.  We tend to come up with ideas about other people and the lives they live.  The unknown can be uncomfortable and so we draw conclusions and then behave as though these conclusions were facts.  Someone cannot speak and we conclude they’re intelligence is lower than those who can.  A person is disabled and we conclude their intelligence is disabled as well.  How can we embrace what we do not know or understand?  It can be a frightening prospect and yet it is the key to a better understanding.

When my father finally succumbed to a wheel chair, having had a debilitating accident in his 40’s he was treated differently.  People condescended to him, they felt sorry for him.  He was a proud man, who at one time was extremely athletic.  Being in a wheel chair changed him.  He became despondent, he hated how he perceived people were viewing him – with pity.

When we are out with Emma, people at first believe her to be a “normal” little girl.  But once they speak to her or are with her for an extended period of time, they begin to realize she is different.  Usually they have no idea what is “wrong”, but the way they behave changes ever so slightly.  Sometimes they’ll raise their voice or their tone will change.  They clip their sentences, they speak as one might to an animal.  (I have been guilty of many of these things, by the way.)  It is confusing to be confronted with a child who looks neuro-typical, but who clearly is not.

I wish I could inhabit Emma for a day so I could feel and know what it is to be her.  Would I treat her differently if I knew what it was like to be her?   I hold onto the idea that if I continue working with her on her reading and writing, one day she’ll be able to tell me.

Last night as I lay beside Emma reading to her, she began laughing.  I put the book I was reading down and said, “What’s so funny, Em?”

“Crash into foof!” she said, breaking into hysterical giggles.

“Did you do that at school?”

“Yes!”

“That sounds like fun,” I said.  Emma was silent.  “Do you want me to keep reading?”

“Yes!”

After I finished reading about our moon landing in 1969, I said, “One day Em, you’re going to be able to read and write.  I can’t wait to read and hear what you’ll say.”

“Go to the computer with Mommy and Daddy,” Emma said.

“Is it easier to communicate on the computer?” I asked.

“Yes. Computer with Mommy and Daddy,” she said.

“Okay.  We’re going to work on that,” I said.

“Mommy sing song?”

“Right.  I’ll sing you a lullabye.”  After I sang her a few songs I hugged her.  “I love you Em.”

“So much,” she said.

Emma

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

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“Strawberry Cake”

Posted on April 11, 2011 by | 1 comment

Saturday morning Emma said, “Make cake?”

“What kind of cake, Em?” I asked.

“Make strawberry cake?”  Emma said in her usual questioning way.

It’s always interesting to me that Emma will make a statement, but will say it in a way that turns it into a question.  For instance when I ask her – do you want  to wear this?  She will answer, “No?”  which means she doesn’t want to wear it, but is asking if it’s okay not to.  Usually my answer is – okay – or – how about this?  To which she’ll then say – Okay or sometimes she’ll offer an alternative of her own, such as, “Wear this one?”  It’s a clever shorthand using much fewer words, but still gets the meaning across.  When we were in Panama having her third stem cell treatment done, another autistic girl a few years older than Emma did the same thing.  I remember after the procedure she kept saying, “Have chicken sandwich?”  She used the same upward lilt to the ending of the sentence that Emma incorporates.

“You want to make strawberry cake?” I asked Emma, somewhat incredulous as this was something she’s never requested before.

“Yeah!” Emma said jumping up and down.

“Okay.  How about we make a cake tonight?”

“Strawberry cake later,” Emma said.

“Yes, this afternoon.  Okay?”

“Okay,” Emma said.

Later that afternoon, Emma came over to me, “Mommy!  I want to make strawberry cake, please!”

“Okay, Em.  What should we do first?”  I asked as Nic ran over to join us.

“Get a bowl and get out strawberries,” Emma said, taking the container of strawberries from the refrigerator.

“Now what should we do?”  I asked.

“Mush them,” Emma said.

“Okay, here,” I handed her a potato masher.

Emma waited as I removed the stems from the strawberries and put them in the bowl.  Then she began mashing them.  After a little while, (about a minute) she took the milk out and said, “Pour in to mush.”

“Yeah, okay,” I said watching her.

“Mom, are you sure this is a good idea?” Nic asked.

I shrugged.  “I don’t know.  Let’s see what happens.”

“But what about the cake?” Nic asked.

“We can make a batter and add the strawberries to it,” I said, wondering exactly how this was going to work out.  “Hey Nic, why don’t you turn the oven on.”

As Nic turned on the oven, Emma continued to mash the strawberries in with the milk.

“Em, I have an idea, let’s use this,” I offered her a hand blender.  “This will mash the strawberries better,” I added, plugging it in.

“Okay.  Have to mush, mush, mush,”  Emma sang as she worked.  “Mush the strawberries, mush, mush, mush, mush the strawberries.”

Meanwhile I had Nic add a little bit of sugar, mix the flour and baking powder, then cream the butter, sugar and eggs in the electric mixer.

“Hey Em, are you ready to add the strawberries to our cake batter?”

“Yes!”  Emma said, pouring the now blended strawberries into the batter.  “Smell!”  she said, lowering her head so that it was close to the batter.

“Does it smell good?” I asked.

“Yum!”  Emma said.

While the cake was in the oven, Nic and Emma helped me make buttercream frosting.  “Em, should we put strawberries into the frosting?”

“No!”  Emma laughed as though this was the most ridiculous question she’d ever heard.  I looked at Nic.

He shrugged and said, “No strawberries in the frosting, Mom.”

“Okay it’s unanimous.”

When the cake was finished we pulled it out of the oven, let it cool and then Nic and Emma “helped” me frost it, which meant licking the spatula, licking the beater, licking the bowl.   When it was finished I said, “Who wants to have some strawberry cake?”

“I do!” Nic yelled.

“Hey Em, want to taste it?”

“Naaah!” Emma said running to the other side of the room.

“Hey Em.  Come on!  It’s your strawberry cake.  Don’t you want to try it?”

“Okay, just a taste,” Emma said coming over to sniff the cake.

“Mom!”  Nic yelled.  “This is the best cake ever!”

Meanwhile Emma poked at the cake with her fork then tasted the frosting and walked away.  Nic looked over, then rolled his eyes at me.  “Whatever Mom.  It’s a great cake,” he said, taking another mouthful.

What remains of Emma’s Strawberry Cake

For more on Emma and autism go to:  EmmasHopeBook

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My Greatest Fear

Posted on March 14, 2011 by | 1 comment

My single greatest fear is when Richard and I die Emma will be institutionalized.  It is a nightmare I try hard not to dwell on.  So when I read articles like this one from the New York Times, http://www.nytimes.com/2011/03/13/nyregion/13homes.html

regarding the rampant abuse in homes for disabled people I am more than horrified.  I am terrified and left feeling nauseous.  It is like waking from a nightmare only to realize the nightmare is real.

The final line in the article is a quote from a memo that was sent out to all staff at a group home:  “DON’T report in your notes that an Incident Report was filled out,” the instructions said, adding: “IF IT ISN’T DOCUMENTED, IT WASN’T DONE.”

That final quote says it all.  The utter disregard for humanity, the unwillingness to see the disabled, whether mentally or physically, as nothing more than easy prey has become so commonplace as to be suitable for a memo.

Over the years we have heard Emma repeat things said to her, things she even now repeats, years later.  Often they are things said to her in anger, and because she mimics the person, is so good at capturing their tone, their accent if they have one and their inflections, we often have been able to determine who has said these things to her.  Usually they are benign comments such as – “don’t put playdoh in your mouth” or “line up!” or “Emma!  Sit down!”  Nothing abusive, all within what one might expect from teachers, caregivers, therapists etc.

But once, Emma came home and started yelling – “Sit down!  You sit down right now!”  “No you cannot leave!”

From those words I was given enough information to ask her a number of questions and realized her bus driver was yelling at her.

The next morning we spoke with her driver who it turns out was getting to her school before the school was open and so, instead of telling us and changing her pick up time, decided to let the bus sit idling outside the school for half and hour with Emma in it.  When she stood up to leave, seeing that they were at her school and with little sense of time, the driver started yelling at her.  Fortunately she had enough language for us to figure out what was going on.  We immediately complained to the Office of Public Transportation, wrote a letter to our lawyer and put a stop to it.  The next morning she had a new driver and a new pick up time.

We have been lucky so far.

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The Bakery

Posted on February 28, 2011 by | 1 comment

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.

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Tiny Steps

Posted on February 23, 2011 by | Leave a comment

I keep waiting for the kind of miraculous progress you only find in movies or works of fiction.  Every now and then I’ll hear a story about a child who has recovered (or as they say in the field – lost their diagnosis) but these are so rare they fall into the category of fantasy in my mind.  Every now and then, when I find myself longing to wake up one morning and have Emma jump into bed with me speaking in full sentences, a look of cognition unmistakable on her face, I must remind myself of all the steps, the tiny steps of progress she makes everyday.  It isn’t just about making myself feel better, it’s about charting her progress.

Last night she went over to the phone in the kitchen.

“Hey Em.  Do you want to call Daddy?” Joe asked.

“Call Daddy?” Emma responded in her typically enigmatic way.

“I’ll say the numbers,” Joe prompted.

Emma dutifully found the right buttons to push and held the receiver up to her ear.  “Hi Daddy!”  Pause.  “Hi Daddy!”

I stood next to her, wondering if she’d gotten the answering machine.

“Hi Daddy!”  Emma said again.

I tried to listen to see if I could detect Richard’s voice.  I didn’t hear anything.  “Did he answer?” I asked Joe.

“Yeah.  He picked up.”

“I’m fine,” Emma said.

Silence.

“Yes.  Glenwood rec center.  Swimming, ice skating,”  Emma said into the phone.  A clear response to the question – What did you do today?  “Sledding, skiing…”

“No, you didn’t ski today,” I interjected.

“No skiing,” Emma said.  “Sledding.”

By this point I had my ear next to her cheek and could hear Richard’s voice.  “I miss you, Emmy,” I heard him say.

“I miss you, Daddy,” she said.

The conversation went on a bit longer, but I was so overcome by the fact she’d said – I miss you Daddy – in response to him saying, I miss you.  Usually when Emma repeats us she repeats us in total.  In other words she would say – I miss you Emmy.  An exact replica of his sentence to her.  But she didn’t do that.  She responded appropriately with the appropriate pronoun.  I was impressed.

I know this is small, but to us, it’s HUGE.  A huge step for Emma to express emotions regarding another person.

Later I said to Richard, “That was completely unprompted!”

“Really?” he asked.

“Yes!  I wasn’t prompting her to say anything,” I told him.  “She said it all on her own.  It’s the Aspen air out here,” I said, referring to our theory that there’s something in the air out here, which seems to inspire an uptick in her language and cognition.  We have seen it every time we come here.  Blame it on Aspen, blame it on all the exercise she gets out here, blame it on anything, we’ll take it.

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Visiting

Posted on February 10, 2011 by | 2 comments

“It’s Mommy!  Mommy come to visit!” Emma said this morning when she saw me.  It’s an odd feeling to have one’s own child, a child one lives with and sees on a daily basis, exclaim with apparent happiness that I’ve come to visit, especially when I am in my own home.  My first thought was that as Richard and I went out the night before and I only saw Emma for a brief period before we left, she was indirectly expressing her feelings that I haven’t been around enough.  Then I began to feel guilty and consoled myself with the fact that I will not be going out again in the foreseeable future.  “You came to visit!” Emma said, cutting through my thoughts.

“Well it’s not really a visit, when I’m here all the time,” I said in an effort to clarify and unburden myself of just a little guilt.

“It’s Mommy!”  Emma repeated, as though she were surprised.

It reminded me of a time not long ago, when Emma on one of her perseverative loops of anguish, kept running through the house crying out something none of us could decipher.

“What is she saying?” we asked each other more than a few times.

Emma’s upset became more extreme and ended with her biting herself.

Someone (it may have been me) then asked, “Why is she doing this?”

I remember thinking, “Umm, because she’s autistic?  Do we really need to look much further?”  But I didn’t say it out loud, okay so maybe I muttered it under my breath.  The point is, applying my own reasoning to Emma’s behavior usually doesn’t get me very far.  And often it is counter-productive.

“You came to visit!”  Emma repeated again.

“No Em.  I live here.  You visit someone when you go to their house, a different house to see them for a little while or when they come here, to our house, but then leave, then they visit you.”  Okay, so it wasn’t the best explanation I’ve ever come up with, but it was the best I could do in the moment.

Emma stared at me for a moment and then said matter-of-factly, “Have breakfast now.”

“Right,” I said.  Too much information.  Got it.

When Emma and I were in her bathroom, getting ready to brush her teeth, she stood on her little stool and while looking at herself in the mirror, put her arm around my neck, pressing her cheek against mine.  “It’s Mommy!” she said, pointing to my reflection.  Then she gave me a kiss on the cheek.

It was one of the moments you wish you had a remote control to hit the pause button on.  I thought of how it was such a typical little kid thing to do, how wonderful it was to see her do something like that.

“Let’s go visit Nic,” I said after she’d finished brushing her teeth – meaning we should go find him, see what he was doing.  And I caught myself.  I understood how and why she said, earlier – I was “visiting.”   Emma was hearing the word used and applying it as best she could in a similar situation.

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Intelligence

Posted on February 8, 2011 by | 3 comments

How can we know what’s really going on inside of a child’s mind who is unable to adequately express themselves?  For neurotypical children we have tests, we ask questions – all verbal or written ways of finding out what they know, whether they’ve learned whatever it is we are trying to teach them.  But what of non-neurotypical children?  How can we really know what they know?

It is this question which causes more confusion than perhaps any other.  Our methods of rating intelligence are deeply flawed.  IQ tests are notoriously incorrect when attempting to gauge the intelligence of a non-verbal person.  Over the years other tests have been created to gain a better idea of intelligence, but nothing we’ve come up with can adequately give us an accurate view of what these children know, what they may be thinking if they could only express themselves.

When confronted with a non-verbal person most of us immediately assume they do not understand and conclude they are not very bright.  Have you ever been to a country whose language you do not speak and noticed how you are treated?  Often it is as though you were an imbecile.  People tend to repeat the same words over and over again, turning the volume up in the mistaken belief your problem is one of hearing as opposed to understanding or being unable to verbalize a response.  We rate intelligence by verbal acuity.

Every now and then we hear of communication devices children have been taught to use, allowing them to communicate in ways they had not been able to previously.  We are astonished at what they say, how lucid and mature they sound.  I’ve read numerous accounts of sessions in which children “speak” to one another in complex sentences, children we would never assume had it in them.  Just because we cannot understand doesn’t mean the person we can’t understand isn’t intelligent or has nothing of interest to say.  All it means is we are not able to understand them.

When Emma was diagnosed with autism at the age of two years and eight months, much of the evaluation conducted by the therapist was directed at us. I remember at the time thinking the process a curious one.  They were evaluating our daughter by asking Richard and me questions which we often had very different answers to.

How many words does she speak?

“Between ten and fifteen,” I’d answer.

“No, no, she knows many more than that,” Richard would say.

And the truth was she did know a great many more than she was articulating, but the actual word count of recognizable words was probably closer to my answer.  So whose answer was more accurate?

Most of us want to feel understood and heard.  Can you imagine what it must be like to know that no matter what you said, it would be met with confusion?  Can you imagine trying to make your needs known only to have them ignored or misunderstood?  Can you imagine what it must be like to have a very complex thought process only to realize no one understands you?

I cannot imagine.  Everyday I am with Emma, I try to and I cannot.

What I do understand is how very lonely it must be.

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The Past Tense

Posted on February 1, 2011 by | Leave a comment

Last night as Emma was getting ready for bed, she said, “Remember, he took it.”  She looked over at me and then said, “He take – no, he took it?”

“Took.  He took it.  That’s right Em.  You had it right the first time.”  I was dismayed to hear her correcting herself.  I’ve never heard her do that before.  There have been countless times, Emma has used the past tense, but this was different.  She was using the past tense, then playing with the present tense as though she were trying it on for size and coming to the conclusion the past tense was what was needed.  And she was correct, which made it all the more incredible.

She smiled at me and repeated, “Remember when he took it.”

“Who, Em.  Who took it?” I asked.

She ignored me and continued, “Remember then you running – you ran.”

“You’re remembering our day at Bounce U, aren’t you?”  I said.

“Mmhm,” she answered.  “Mmhm” is new.  It’s something Emma says now instead of “Yes,” which she often said in the past, even when she meant “No.”  Now she says, “Mmhm,” or however you write out the sound of agreement people make which is less than “Uh-huh” and more than “Mmmm.”

“That was a fun day, wasn’t it?”

“Mmhm,” Emma nodded her head and added, “He took the picture!  You have to give it back.  You ran.  That’s funny.”  She sat up and began giggling.

I realize a little explanation is needed here.

On Emma’s birthday – which she shares with Martin Luther King – Richard, Joe, Nic and I took Emma to an indoor playground filled with inflatable structures.  It’s way out in Brooklyn and appropriately named, BounceU.  Emma loves the place and since we’d celebrated her birthday with a party and friends the day before, it seemed the perfect setting to spend her actual birthday.

Once we arrived, we ran into a friend of Emma’s from her school who was there with both her parents, Ryan and Susan.   Ryan had a camera with him, which Emma immediately wanted to take pictures with.  It quickly became a game with Becca’s good natured dad chasing Emma as she ran around taking shots of – the carpeting, people’s feet, her own face, etc. before he caught up with her and took the camera, often hiding it in places she could see.  Emma would then try to sneak the camera away while Ryan pretended not to notice, the whole thing was hilarious and Emma has referred to that day many times since.

Emma continued to giggle.  “He took it.  He want to take a picture.  You ran!”  She was laughing so hard she had to catch her breath.  “No!  You have to give it back!”  This last was said in a stern voice.  “Emma!”  Then she doubled over with laughter and said, “Remember?”

At this point I was laughing too.  “Em, that was such a fun day, wasn’t it.  And you got to spend time with Becca.”

“Yeah,” Emma said, before starting to giggle again.

Em & Becca

Emma’s self portrait

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Emma and her Singing

Posted on January 31, 2011 by | Leave a comment

“Sing Zoo Zoo Zoo with your mouth closed?”  Emma said this morning as she was getting ready for school.

“Good idea!” I said.  And then began to sing one of her favorite songs with my mouth closed.

She waited patiently until I had finished the first refrain and then said, “Emma’s turn!”

I knew, before I began singing that she meant she wanted to sing the song with her mouth closed, but since repeatedly correcting her over the years hasn’t made a dent in her continued use of “you” in place of “I” or “me,” I have begun taking her words more literally and seeing how that works.  Other than mildly irritating her, I’m not sure it’s making much of a difference.  The elusive pronoun continues to trip her up.

In addition there are words which she finds impossible to articulate.  A few of them can be found in another of her favorite songs – “Fabulous”.  Emma says – Sandy lot – or something that sounds suspiciously like that, in place of Fabulous as well as humming the word “imported” which is used repeatedly in the song, instead of making an attempt to say some version of the word.

Yesterday I tried more than a few times to have her repeat my enunciation of “imported” first by singing the lyrics “towels imported from Turkey, Turkey imported from Maine…” but when that didn’t help I tried to have her say “imported” all by itself.  I could see how hard she was trying, she watched my mouth as I said the word, she tried her best to mimic me, all to no avail and eventually wandered off into our bedroom where I could hear her singing loudly her own special version of the song, the tune utterly recognizable even as the words were not.

Richard found the lyrics of the song online and printed out several copies so each of us could review and sing along with her when she launched into yet another rousing rendition of it, which happens more than a few times over the course of a day.  Emma articulates a few lines of the song beautifully – “I want MORE!” and”Excuse Me Thank You” then lapses into her “Emmalish” – impossible for anyone to decipher.  Sometimes Emma will allow all of us to join her in singing, but often, particularly when it is her brother, Nic who is singing along she will stop abruptly and yell, “Nicky L. stop singing!”  or “Nic!  Stop talking!”

To which we respond, “No Emma.  Nic can sing too if he wants.”

“Forget it, it’s no fun now,” Nic will say as we wait for him to continue.  “She ruined it.”

Or if Nic does have the fortitude to continue, Emma will stand silently for a moment before seeking refuge in her bedroom and shutting the door.  It seemed as though it was as much a gesture of contempt for the whole unruly scene as a desire to escape the singing.  Nic usually shrugs and returns to whatever it was he was doing before the whole thing began.

I cannot hold a tune.  This is a fact I came to terms with early on in junior high school when I was contently singing along to “Angie” by the Rolling Stones and was ridiculed for my off key trilling.  My ego bruised, I was careful to hum or sing quietly under my breath or in the privacy of my own room.  Something I have continued to do ever since.  Emma however, did not inherit my tin ear.  Hers is the voice of an angel or Broadway singer, (depending on the song) as she belts out songs in decibels I didn’t know were possible.

The other week when we gathered to sing Happy Birthday, the one song anyone can sing off key with abandon, with no fear of ridicule, Emma out sang all of us put together.

“She’s  got a set of pipes on her,” Richard said, proudly when the song had come to it’s end.

“Yup.  She sure does,” we agreed.

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Snow Day

Posted on January 27, 2011 by | Leave a comment

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.

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The Comedian

Posted on January 26, 2011 by | Leave a comment

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.

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“No Braid!”

Posted on January 21, 2011 by | Leave a comment

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!”

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“Why?”

Posted on January 20, 2011 by | 2 comments

Answering “why” questions is usually quite difficult if not impossible for many autistic children.  Emma is no exception.  Usually a conversation, which starts with “Why?” ends as abruptly as it began.

“Hey Em, why do you want to do that?”  “Why do you want to go there?”  “Why are you screaming?” “Why are you sad?” “Why are you hitting yourself?” etc.

99.9% of the time when asked “why?” Emma will either – walk away, not answer or will answer by repeating the question.

“Why?” Emma will respond in a high-pitched voice edged with anxiety.  “Why you hitting,” or “Why want to?”

Repeating the question does not produce positive results.  Repeating the question in a louder voice also does not make a difference.  After all there is nothing wrong with Emma’s hearing.  She hears the question she just has a difficult time responding.  So it was noteworthy when Emma responded to a “why” question the other day.

Emma wanted to have a pair of scissors so as to cut the gym mat we had tied around a standing beam for Nic to use when practicing his karate punches and kicks.

“Emma why do you want to take it down?” Richard asked.

“Because I want to jump into the swimming pool,” came Emma’s surprising response.

Now many of you reading this may be confused by her words, but to us, who understood she meant she wanted to turn the multi-colored gym mat on it’s other side, which happens to be all blue, and pretend it’s a swimming pool, we were in shock that she answered a “why” question and answered it so beautifully with a clear, concise, complete sentence.

When Richard told me I couldn’t believe it.  “Really?” I said, barely able to contain my excitement.  “Really?  She said because?”

Richard nodded his head.

“But that’s amazing!”

“Yup,” Richard said.

So Richard cut the mat down, told her to put on her swimsuit and let her “dive” into the “swimming pool”.

Ah life at the Zurcher-Long’s… it just never gets boring around here.

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“Caesar Stop the Music!”

Posted on January 19, 2011 by | 2 comments

These are the words Emma sings, to the Rihanna song, Please Don’t Stop the Music, which despite our corrections, she insists on singing her way.

“Emma!  It’s not Caesar, it’s Please don’t stop the music!”  We have said on more than one occasion.

Often she will correct herself, only to return to – “Caesar stop the music”, and then she’ll laugh and continue the song.   “Caesar stop the music, Caesar stop the music, Caesar stop the music, Caesar stop the music!”

What follows is pretty garbled and since I don’t know the words to the song, impossible for me to decode.  But after the garbled words she will usually hum, keeping the tune intact, before singing, “I wanna take you away, let’s escape…” more garbled words and humming, before launching into the grand finale, “Caesar stop the, Caesar stop the, Caesar stop the, Caesar stop the music!”

This is Emma at her silliest and yet most endearing.  I know she knows the lyrics.  We’ve corrected her dozens of times.  I know she can say the correct words as I’ve heard her on rare occasion say them.  But “Caesar stop the music” is the way she prefers to sing the song.

That Emma “plays” with words – although that may be a gross misreading of what is actually going on – is something I’ve always found fascinating.  As a toddler, she would say things none of us could understand, but over time we were able to decipher.  Often they were nonsense words, which in no way resembled the actual word used for the object she was referring to, such as “Cokie” for blanket.  For months we thought she was asking to eat a cookie.  And then there are the words she uses to describe things, a kind of poetic beauty, as when she called rain, “bubbles”.  There is a literalness to that – if you examine the rain as it falls from the sky it does resemble tiny bubbles and when it falls to the ground it will often form a bubble, but it isn’t something I would ever have come up with.

Emma also uses words, both descriptive as well as strangely similar to the actual words as she does with the stars in the night, “sorry bubbles”, “cheese solos” for cheese doodles.  It’s interesting to note, for a child who is so literal she cannot come up with a name for her baby doll, but instead calls her, “baby” or “doll” or “girl” that Emma creates such unusual words to describe other things.  It is, perhaps, this literal application to things which we take for granted or do not even notice that makes her choice of words so interesting.

As always I am left wishing I could be inside her body and mind for an hour to feel, hear, see and experience the world as she does.

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Wake Up Calls

Posted on January 14, 2011 by | Leave a comment

Last night Emma came into our bedroom every few hours.  The first time was just after midnight, then again at 2:30AM or thereabout, again sometime after 3:00AM and once more, only I was so tired, I can no longer remember what time it was.  The last time she came in, standing beside the bed and looking at me, we told her she had to go back into her room and that we would come get her when it was time to wake up.  When she left, whispering, “Mommy, Mommy come into the other room,” I stayed awake waiting for her return.  Only she didn’t return.  She went back to her room and managed to fall back asleep, something I was unable to do.

So I’m tired.

And when I’m tired things can look a bit bleak.

I know this about myself.

This post is therefore about countering that exhaustion induced bleakness with a more balanced view of Emma and how far she’s come in the last year.

At this time last year, Emma was still wearing a diaper at night.  She was often awake in the middle of the night, unable to go back to sleep without one of us, usually me, lying next to her for the remainder of the night.  Or she would come into our bed, forcing Richard to sleep in her twin bed in her bedroom.  The feeling of utter exhaustion I am currently experiencing was commonplace a year ago.

In addition to the nocturnal awakenings, Emma had a habit of sucking on a strand of her hair, returning home with an encrusted lock, which I had to soak in lukewarm water before brushing out.  Emma was unable to shower by herself, brush her teeth, floss or brush her hair and needed reminders to go to the bathroom. Emma showed no interest in most toys and her language was not as complex as it is now.  Her utterances were in the three to five word category and often were difficult to understand.  Her difficulty distinguishing between pronouns such as “you”, “me”, “I”, “him” and “her” was all too apparent.  More often than not she referred to herself in the third person and often referred to others by calling them – “Emma”.

In the last few months, Emma has become enthralled with one of her baby dolls.  Each night for the past week, she comes home, bathes and washes her baby doll’s hair with shampoo, then wraps her in a towel and puts her to bed.  Her pretend play continues to be somewhat literal, in other words she doesn’t pretend to talk for her doll, she isn’t able to “name” her dolls beyond calling them things like:  doll, girl, baby, etc.  But Emma is showing an increased interest in playing with them, taking on the role of “mother” and spends longer periods doing “motherly” things with them.
This is the first year Emma has shown even a remote interest in Christmas and likewise with her birthday.  She has been talking about her birthday and the party we are giving her for over a month now.  Sadly, few children are able to come to her party, as it falls on a three-day weekend and almost everyone is busy or away.  But despite this, we are making sure she and her birthday are celebrated.

Sometimes it takes exhaustion and numerous wake up calls to remind me of just how far Emma has come.

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