Tag Archives: autism & speech

“Why?”

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.

“Caesar Stop the Music!”

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.

Joe

Yesterday Richard, Emma, Nic and I went to a post wedding party for Joe, Emma’s therapist and Joe’s wife, Angelica.  It is always interesting going to a function together as we never know how Emma will behave.   Will she have a meltdown?  Will she insist on leaving right away?  Will she be so utterly unmanageable that we spend the entire party racing around after her?  When it is a dressy affair, one with speeches and food, which she will have no interest in, it becomes all the more worrisome.  We knew we had a better chance things would go well by the very fact that this was a party for Joe and Emma adores Joe.

Still, we did our best to prepare her before we left.

“We are going to get dressed up, then take a taxi and see Joe!” We told her.

“See Joe!” Emma repeated, nodding her head and twirling in place.

“That’s right Joe and Angelica,” I said.

“It’s a birthday party,” Emma concluded.

“No.  It’s Joe and Angelica’s party celebrating their marriage,” I said, not sure how else to describe a post wedding brunch.

“A wedding-birthday party,” Emma said.

“Well, sort of.  But it’s to celebrate their getting married,” I explained.

“Okay,” Emma said.

“There’s going to be food there and lots of people…” I said.

“And Joe and Angelica!” Emma interrupted me.

“That’s right.  Joe and Angelica will be there.”

“Angelica!  Angelica!”  Emma sang as she twirled in place.

“And there will be a few speeches and we will see a video and then we will come home and change,” I continued.

“Go to Chelsea gym bowling,” Emma said.

“Yeah.  Okay.  We can go bowling at Chelsea Piers afterward,” I said.

“Go with Mommy and Nickey and Daddy,” Emma said.

“Exactly,” I said.

“Okay!  Emma put on a party dress,” Emma said.

“Yes,” I said.

The party was lovely and Emma was terrific, on her best behavior.  Joe’s niece was there, an adorable two-year old in a party dress similar to Emma’s.   They ran around together, though in truth it was Victoria’s exuberant friendliness, undeterred by Emma’s less than attentive response to her, which kept their interactions going.  If Emma sat down, Victoria sat down next to her.  When Emma took her shoes off, off came Victoria’s shoes.  When Emma ran around the room waving her arms, Victoria followed waving her arms as well.  It reminded me of how neuro-typical children behave.  They follow the older child and often mimic them.  Emma never did that.

People ate and chatted with one another.  Both Nic and Emma ran around with the two other children there.  Then Joe stood up to give his speech.  Emma sat down and remained quiet as he spoke.  It was a heart felt speech, incredibly moving and left many of us in tears.

When it was my turn to give a speech, I pulled out my notes.  I had decided, when considering what to say, that perhaps I would use at least some of my time explaining exactly what it is Joe does.  I think it’s easy for people who know nothing about autism to assume he is a glorified babysitter.  Someone who hangs out with Emma and takes her to the park.  This could not be farther from the truth.

When Richard and I went to Bethesda to train in the DIR/floortime method with Stanley Greenspan, who invented it and his son Jake, we were exhausted before the day had ended.  Attempting to engage and evoke language from an essentially non-verbal child who is uninterested in any form of interaction is like nothing I have ever done.  It is physically and emotionally exhausting.  It requires a creativity, quick-thinking, concentration, focus and patience most people simply do not have.  Richard and I have met hundreds of therapists over the years, some have it and many more who do not.  The idea that anyone can effectively work with autistic children is just not true.

Joe is the ninja master, the autism whisperer.  He has a talent for it, an intuitive sense, which I have had the pleasure of observing many, many times.  Joe is not just a gifted floortime therapist, he is also a well trained one.  It is a formidable pairing.

And yet, what I have witnessed time and time again is how Joe and others like him are undermined, their work is seen as little more than babysitting, their profession consistently undervalued.  Devoting ones life to helping children with special needs is a noble calling.  Joe is royalty among the noble.

It was with these sentiments that I rose to give my speech.  I cannot say I got through it flawlessly because I did not.  I stumbled and I had to refer to my notes, I choked up several times and at one point had to stop speaking, as I was completely overwhelmed with emotion.  But mostly I wanted others to understand the importance of what Joe does everyday.   Joe has transformed Emma’s life in untold ways.  His commitment to her, his dedication to her has formed who she is and who she will become.

One story I forgot to mention yesterday was when we were having a hearing with the Board of Education.   Joe had testified as to what he does with Emma.  Richard and I had also testified regarding Joe’s contribution.  During the final cross-examination by our attorney of the attorney for the Board of Education regarding some of her arguments, she looked up from her notes and said, “Well I don’t know.  I’m not a Joe Kennedy.”

When I am with Emma during one of her legendary meltdowns I am fortunate if I have a momentary reprieve when I am able to ask myself – what would Joe say or do in this situation?  The times when I am able to emulate Joe are the times I know I’ve done the right thing.

The Washing Machine

“Should we put Emma in the washing machine?!” Emma asked, while pointing to the washing machine filled with clothing.  Then before I could answer, she shouted gleefully, “NO!!   We cannot put Emma in the washing machine!”  At which point Emma began to laugh hysterically.  “Should we put Mommy in the washing machine?” Emma asked, still laughing and pointing at me.

“Good idea, Em.  But will I fit?” I asked.

“NO!”  Emma shrieked with laughter.  “You cannot fit in the washing machine.  Mommy’s too big!”

“But maybe I could squeeze inside if I scrunched down into a teeny little ball,” I said, sucking my cheeks in and curling my arms up next to my sides.

“NO!”  Emma shouted.  “You cannot fit inside the washing machine.  Emma’s too big!”

“Emma’s too big?  Or Mommy’s too big?”  I asked, laughing along with her.

“Emma AND Mommy too big!  We cannot put Emma in the washing machine,” Emma said.

This went on for quite some time, with me asking if we should put a whole variety of people in the washing machine:  Daddy, Nic, Granma, Uncle Andy, Uncle Victor, Aunt Toni, Uncle Chris…  the list went on.

Each time Emma would answer, “NO!  We cannot put  Nic in the washing machine. Nic is too big!” or “NO!  We cannot put Daddy in the washing machine.  Daddy’s too big!”

“What about Merlin?  Should we put Merlin in the washing machine?” I asked, expecting the same answer from her.

But Emma surprised me by saying, “Yes.”

Taken aback I didn’t say anything for a second.  Then I repeated, “We should put Merlin in the washing machine?”

“Yes!”  Emma said.

“Are you sure?” I asked buying for time and trying to figure out how to save poor Merlin from such a murky fate.

“YES!”  Emma shouted.  “We can put Merlin in the washing machine!”

“Nooooooo!  We cannot put Merlin in the washing machine,” I said.

Emma threw her head back and laughed and laughed.  I don’t know that I have seen her derive so much joy from anything in days.

Poor Merlin.

Theories

Autism is nothing without theories.  Specialists, doctors, scientists, geneticists, parents, everyone has a theory when it comes to autism.

Richard claims I have more theories regarding autism than the most versed specialist.  And he’s right, I do.  The only difference is, I freely admit 95% of them turn out to be wrong and the remaining 5% have no validity because while they may prove right for Emma on any given day, they do not hold up long term or within the larger autism population.

Richard and I have a running joke about my desire, my need for theories.  When we are confronted with any new behavior from Emma, Richard will look at me and say, ”And your theory is?”

The beauty of having theories is, autism remains an enormous question mark and so the most impractical of theories hold weight if for no other reason than because they are difficult to prove wrong.  There is so much more we do not know than we do.  The other thing about theories is they give us  (me anyway) hope.  Hope that we’re moving forward.  Hope that maybe this line of thinking is going in the right direction.  Hope that the theory will lead to another theory, which in turn will prove to be true, leading us to a cure, a cause, something, anything…  No matter how crazy, the theory stands until proven otherwise and with autism that may be for a long time.  It’s something, anything, to go on amidst the great expanse of unknown.

Richard usually leaves the theorizing to me, so I was surprised when he said to me last night, “I have a theory.’

“Really?” I said looking at him to be sure he wasn’t making fun of me.

“Yes,” he said.

“Great!  Tell me more.” I said.

“Emma is doing great. “

“And your theory is?” I prodded.

“That is my theory.  She’s doing great.  The other day she and I were walking down the street.  I passed her and stepped off the curb to hail a taxi, but she didn’t see me.  She looked around, her eyes got really big and then she said something, I can’t remember what.  But she was scared and didn’t know where I was.  I called out to her – Emma!  I’m right here!  When she saw me, she cried out – There’s Daddy!  There’s Daddy!  I found you!  That’s never happened before,” Richard paused.  “She was really frightened when she thought I wasn’t there,” he said.

Suddenly I remembered when Emma was three and we went to New Paltz for the weekend.  We stayed at a huge rambling hotel right out of The Shining.  Richard and I in one room, the children with Joe in an adjoining room.  At around 2:00AM I heard a door slam, thinking nothing of it I started to go back to sleep.  Five minutes later our door opened and Joe said, “Is Emma with you guys?”  In a panic all of us threw on clothes and began searching the labryinthian hallways calling for Emma.  We split up hoping we might cover more ground that way, I ran to the front desk and reported her missing to the hotel staff.  It was the dead of winter, snow drifts piled up around the hotel, I was terrified Emma might open one of the self locking doors to the outside and not be able to get back in.  She was bare foot with just her nightgown on.  After about 20 minutes when panic had turned to ice – when your body no longer feels it is your own – one of us found her.  It was either Joe or Richard, I can no longer remember, but I know I began to cry in relief.  She was holding hands with some man who worked for the hotel.  He was quietly talking to her – at that time she had almost no language – and leading her back to the front desk.   I was in tears, thinking of all the horrible things that might have happened to her.  But Emma acted as though nothing unusual had occurred.

Richard continued, “Her sentences are becoming more complex, she’s become much more engaged, she talks all the time now and it’s not just because she wants something.  She’s talking to connect with us.  She wants to connect with us.  And except for the other night, she hasn’t wet the bed in almost a month now.”  He looked at me and then added, “She’s doing great.”

I remember when Emma turned four we had a big birthday party for her, hired a musician to come and play the guitar and sing kid friendly songs.  Emma was dressed up in one of her “party” dresses with a tiara on.  She spent most of the party trying to lie down inside of the musician’s guitar case, ignoring all the other children and the music.  I remember plastering on a smile for our guests, at one point I excused myself and wept in the back, giving myself two minutes to cry before returning to the party and pretending everything was fine.  I didn’t fully understand her sensory issues; I hadn’t developed any theories at that point.  I was still in the process of reading everyone else’s theories regarding autism.

“It’s a good theory,” I said to Richard.

“Yup.  I like it,” he said.

Emma’s Language

Emma’s language continues to fascinate.  What follows are a number of examples demonstrating Emma’s creative use of the English language.

This morning she said tearfully, “ Rope?”

I now know she was asking me to help her find Merlin’s cat toy, which Emma has become particularly fond of.  It resembles a fishing rod, only it’s plastic and at the end of a thinner plastic “line” is a cat’s version of a fishing fly.  The “fly” has feathers in royal blue and black though ours, or I should say, Emma’s no longer has any feathers.  Just a few defeated bristles are all that remain.  I tried to get Emma to call the toy “Merlin’s cat catcher”.  Emma repeated the words and then said, “rope,” in a matter-of-fact tone.  Fair enough, saying rope is certainly easier than the tongue twister I was suggesting.  Emma’s interest in Merlin’s toy is not to engage Merlin in any sort of play.  She likes to hold it and chew on the thinner plastic line.  Merlin, under the misguided impression it is still his toy, leaps at the bristled end and tries to grab it in his mouth.  Emma ignores him unless prompted by one of us to use it to play with him.  At which point she will whip the thing around her head so violently Merlin runs away.  Mission accomplished.  No one can accuse Emma of not being able to creatively problem solve.

“Leash?” Emma said the other day.  “Leash” is short hand for any number of things:  tape measure, jump rope, belt or dog’s leash.  It began out in Colorado where she loves to hold the leash attached to one of my mothers’ two German Shepherds.  She is actually terrified of most dogs, including my mother’s.  Giving her the leash to hold is one way to calm her when we are taking the dogs for a walk.  But since we do not own a dog in New York City I know when she asks, she is looking for my tape measure or less frequently her jump rope.

This morning Emma sat on the floor and looked at some work sheets that had been sent home in her backpack.  There were a series of numbers referring to corresponding red dots.  Emma looked at the number and said, “What’s that letter?”  She then counted the red dots, ” One, two, THREE!”

“What’s that number, Emma?”  I said.  “It’s a number.”

Dutifully Emma repeated, “What’s that number?  One, two, three, four.  FOUR!” She looked up at me and smiled.  “What’s that letter?”  She said pointing to the number 6 on the next work sheet.

“It’s a number, Em.  Look these are numbers and this,” I drew the letter A, “is a letter.  Can you see the difference?”

Emma nodded her head.  “A”, she said.

It was not clear she understood the difference.

As I watched her counting and naming the numbers I thought about how it must all seem so arbitrary to her.  A number, a letter, a rope, a leash, a toy…  All things we learn to identify at a very young age and never think about again.  But for Emma this is not the case.  Why would the symbol for a quantity – say the number 3 – be any different than the letter G if one does not understand quantity?  If one continues along this line of thinking all the names we apply to letters in the alphabet must seem incomprehensible.  Why is the letter H called “Aich”?  It’s phonetic sound doesn’t offer any clues either as it’s the sound one makes when hit in the solar plexis or something resembling a whispered “huh”.   As anyone knows who has attempted to learn the English language, for every rule there is an exception, making it an exceedingly difficult language to learn.

The other night Emma was recounting our trip to Costa Rica, something she often does.  She tapped her stomach and said, “Now go bang-bang!”  Which means she was remembering how her stomach hurt.  “Now see thunder.” She added.  Meaning she remembered her headache.  “Make you cry.”  She said and proceeded to pretend cry while looking at her reflection in the mirror.

We have an African Senufo Bird in our loft which is a primitive statue carved from wood.  It stands about five and half feet tall and Emma refers to it as – “giraffe”.  I have corrected her on numerous occasions, but she remains unconvinced.

Yesterday, seated next to Emma while she ate her breakfast, she looked at my upper arm and said,  “Ahhhh… you bit.”  She made a sad face while pointing to three scars on my arm, which I received when I broke my shoulder about 14 years ago.  The doctors inserted three metal rods into my arm to facilitate the mending of the broken bones.  Emma has never mentioned the scars, so it was interesting that she took notice and then showed genuine compassion for what she imagined must have happened – that I bit myself.  Something Emma does to herself when her frustration becomes unbearable.  That Emma was relating the scars on my arm to an action she often takes and was identifying with it was remarkable and very hopeful.

I have come to appreciate Emma’s use of language.   I would like to become fluent in it.

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.

Soma Mukhopadhyay’s Workshop

A number of people contacted me regarding the documentary – A Mother’s Courage – the documentary about an Icelandic woman’s search to help her autistic son.  The documentary tracks the journey of a mother who interviews many and eventually goes to Austin, Texas where Soma Mukhopadhyay has created the Halo Clinic.  Soma is the mother of a non-verbal autistic child, Tito.  (Tito is no longer a child.) Soma developed a program, Rapid Prompting Method, to teach her son to read and write.  Tito has gone on to write several books, despite being non-verbal.

Joe, Emma’s therapist and I drove out to the Bronx this past Saturday where Soma was leading a workshop.  Soma described RPM as a method to “empower the student and express himself.”  Soma’s method takes a non-judgmental view of self-stimulatory behaviors.  She believes they are clues that can help us interact and teach the autistic child.  Soma never once implied nor does her website that her method is a “cure” for autism.   RPM is a means by which autistics can learn to communicate.

For those of us who parent an autistic child, that is an amazing and wonderfully hopeful prospect.  There is not a day that passes when I do not have the thought – I wish I knew what Emma was thinking.  I wish I had a window into her world.  The idea that Emma might one day be able to read and write is something I have hardly dared to wish for.

Toward the end of the workshop, Soma’s son Tito wrote on the large pad of paper Soma had propped up on an easel:  “I think you are talking too loud.”  Soma had been speaking into a microphone.  She held the microphone to his mouth so he could hear how he sounded as he made a noise into it.   It was a light hearted moment, a moment of a teenager commenting on his mother.

Tito writes in his book – The Mind Tree:  “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being – ready to grow together.”

I have ordered Soma’s book describing in detail her Rapid Prompting Method.  I am guardedly optimistic.

For more information on Soma and her work with her son Tito, go to:  www.halo-soma.org

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.

Sunday in the Park with Emma

Most Sundays we all play around the house until noon and then Ariane will do something with Nic while I take Emma on an outing, usually to the “big park” – Central Park. Emma knows what she likes and likes her routines, so most of the time our forays are predictable, except when I try to mix things up deliberately just so she doesn’t get too OCD about it. In the Spring, Fall and Winter months, the routine begins with a visit to the “big carousel” followed by the zoo, the children’s zoo, FAO Schwartz and the Apple store. Sometimes we start with a trip to the Natural History museum and then do one or two items on the other itinerary.

In late Spring, Emma will begin talking about how “the ice skating’s all gone…ice skating over”, in a very sad voice with a very concerned frown. In truth, she’s much more excited than sad, because she can’t wait for Memorial Weekend when an amusement park opens up where the ice skating rink used to be. It’s called Victorian Gardens and Emma has been talking about it and going over to the rink to see if it’s open every weekend for the last month.

Hooray! It opened this weekend and she went on Saturday with Lee and Sunday with me. We spent a few hours there and then we changed into her bathing suit and went to one of the playgrounds inside the park that has a nice sprinkler and a series of little pools she can sit in. We spent a couple more hours there, Emma playing in the water and in the sand and climbing and sliding.

When it was time to go home, Emma did a really good job of rinsing the sand off as soon as I asked her to – something that used to be incredibly difficult to get her to do without a complete tantrum. On the way to the train we stopped for a snack and sat on a park bench. While she was sitting there, happily munching away on her Pirate Booty, she pointed to a butterfly and said, “butterfly.” She pointed again when a woman walked by pushing a carriage and said, “baby asleep in the stroller.”

This is the second weekend in a row that she has pointed repeatedly at different things and labeled her sightings. I’m sure this won’t seem very significant to most people, but it was her lack of pointing and labeling that finally ‘clinched’ her diagnosis with ASD and cut through our last shred of denial. To see her pointing at things while looking at me for my reaction fills me with great joy – and hope.

Years ago we started a diary book that we called Emma’s Hope Book, where we listed every little advancement she made as a way to focus on the positive aspects of her recovery and to bolster our spirits as we repeatedly slid into despair at just how slow her progress has been compared to normal children her age. “Compare and despair” is a recipe for hopelessness and so we still cling to every new achievement as a victory flag placed on top of a mountain.

Emma’s Hope Book is alive and well here (and now open to the public) and more than ever does it serve it’s intended purpose for us – to cut through the other side of our denial — our denial of her gradual but indisputable progress. She is getting better, slowly but surely, more slowly than we would want of course, but moving forward one day at a time. We have hope – and the evidence documented on these pages – that she is getting better a little bit at a time, day after day.

This Morning’s “Conversation”

(Showing Emma this photograph)

Emma splashing

A:  Hey Emma!  What do you see?

Em:  He putting on the sprinkler.

A:  Who’s “he”?

Em:  He putting on his feet in the sprinkler.

A:  Who is that?

Em:  Emma.  Emma putting he feet in the sprinkler.

A:  Her.  Her feet in the sprinkler.

Em:  Her.

A:  You’re putting your feet in the sprinkler.

Em:  Yeah.

A:  Was that fun?

Em:  Yeah.

(I show her this photograph)

Me:  What about this?  What’s going on in this photograph?

Em:  Dr. Halper.

Me:  What’s he doing?

Em:  Just Toni Karlsrud.

Me:  Is that Dr. Karlsrud?

Em:  Nooooo!  (Laughing) Dr. Halper.

A:  What’s happenig to you?

Em:  (Touching photograph.)  Goes beep, beep, beep, beep.

A:  You’re having a QEEG done.  It measures your brain waves.

(Emma gets up and walks away.)

A:  Emmy!  Come back!

Em:  Where are you going?

A:  Emmy!  Come back!

(I follow her into the other room where Richard is.)

A:  Hey Em, do you know why you’re having a QEEG done?

Em:  Now goes beep, beep, beep…  (while she says this she is touching various points on her head where the electrodes are placed.)  beep, beep, beep, beep… (she touches her arm) beep.

A:  They don’t put one on your arm!

Em:  (Laughs) Beep!

A:  Do you know why this is being done to you?

Em:  Beep, beep, beep, beep.

A:  It’s looking at your brain.  It measures your brain waves.

Em:  Beep, beep.

A:  Do you like going to see Dr. Halper and having a QEEG?

Em:  Yeah!

A:  Should we go pick out what you’re going to wear today?

Em:  Yeah, sit for one more minute.

A:  Okay.

Emma At Ten Months Old

I sat in the pediatrician’s office with Emma squirming on my lap.  “She’s not really talking.  I mean she says words grouped together, but not single words.”

“Like what?” the pediatrician asked.

“Ba-bye, Da-da, Ah-done… things like that.”

“Smart kid,” the pediatrician said, checking Emma’s reflexes.

“So there’s nothing to worry about?” I asked.

“She looks great,” the pediatrician laughed, as Emma scooted across the room one leg jutted out in a crab-like crawl.

Thirteen Months

“So I shouldn’t worry, right?” I asked the young master’s degree student, studying speech therapy, who was Nic’s ‘teacher’ at his pre-school.

She nodded, “Some kids, especially the ones who are more athletic often have delayed speech.”  She looked at me with a smile.  “And her brother is pretty precocious, sometimes their younger siblings are slow to speak.  I’m sure it’ll come in time.”

I was turning into one of those neurotic New York moms.  It was classic.  I needed to stop worrying, Emma was fine, I told myself as Nic and I walked home from his pre-school.

Twenty-two Months

“Do you think she might have a hearing problem?” I asked my girl friend.

“But she looked up when that siren went by,” she reasoned.

“Yeah, I know,” I said, watching Emma push an empty swing.  “Watch this.  Hey Emma!” I called out.

No response.

Louder, “Hey Emma!”

Nothing.

Now shouting, “Emma!  Emma!  Look at Mommy!”

But Emma continued to play with the empty swing.

“Okay, but half the time my kids don’t look at me when I call them either.  Kids do that,” my friend said.  “Don’t they?”  She looked at me with half a smile.   “Anyway who wouldn’t be mesmerized by that swing?” she added, putting her arm around me and giving me a squeeze.

Thrity-One Months

“When was the last time you heard Emma say, Chase me?” Richard asked.

I thought for a few seconds.  “When was the last time you heard Emma say anything?” I asked in answer.

This was the conversation that poked the final hole in my bubble of denial.   It was August and we had rented a house in Cape Cod.   I remember standing in the living room, looking outside, watching the children.  Nic and Emma were on the porch in their ‘swimming pool’ a make-shift plastic tub we’d filled with water.

The mask I had so meticulously constructed for myself and my family fell away revealing something I couldn’t identify and could not understand.  I remember telling myself to breathe through the rising panic that threatened to consume me.   And then I remember feeling the feeling that I would feel many times in the ensuing years.  Failure.  Something was terribly wrong with my child and I had failed to see it, failed to do something about it.

As often happens when I feel overwhelmed, I began to make a mental list of actions I would take the instant we returned to New York.    The first two items on my list were:  get a hearing test done and get an evaluation.

Playing Me

Emma is extremely agile and very athletic.  We had the following conversation while she was navigating her way along the top of our couch in the living room.  She has very good balance.

Emma:  (Pretending to lose her balance) Uh – oh!  If you fall down, you have to go see Dr. Karlsrud!  Toni!  Toni Karlsrud.

Me:  Toni?  My sister Toni?  Are you thinking of my sister?

Emma:  Toni comes, Dr. Toni Karlsrud.

Me:  Not Toni Karlsrud, just Dr. Karlsrud.

Emma (Laughing): Dr. Just Karlsrud.

Me:  Emma!  No not Dr. Just Karlsrud, her name is Dr. Karlsrud.

Emma:  Just Karlsrud!  You have to get down!

Me:  Emmy, you know what her name is.  (Pause) What’s her name?

Emma:  Dr. Toni Just Karlsrud.

Me (Looking over at Richard):  I know she knows her name.

Richard:  I think she’s playing you.

Me: Really?

Richard (Laughing): Yeah.

Emma:  You have to be careful.  Uh… uh… don’t fall!  (She pretends to teeter.)

Me:  Hey Em!  What’s your doctor’s name?

Emma:  (Laughing) Dr. Just Karlsrud.

This morning while waiting for the bus, Emma was walking along the top of the little metal fence surrounding the tree in the front of our building, something she often does and has never fallen down from.

Emma:  Be careful.  You fall down, you have to go see Dr. Karlsrud!

Me:  Oh now she knows her name.

Richard:  Told you she was playing you.

Nic (Laughing):  Totally!

Me (Shaking my head):  Wow.  She’s good.

Toys

When Nic was a toddler, I would frequently take him to our favorite local toy store, Kidding Around, where he would play with the elaborate train set, Tina, the owner, had in the back of the store.  Very popular with the four and under crowd, particularly in the afternoons, we would go in the morning and often, Nic would have the train set all to himself.  Each day of our visit when Nic was just beginning to talk, he would point to something as we were leaving, “That!” he would say, which meant he wanted to take it home with him.

When Emma was about the same age, I took her to Kidding Around, but nothing caught her attention.  I tried to entice her, “Look Emma!  What a pretty doll!  Do you like it?”

She ignored me and wandered off.

Undeterred I went over to the two wooden tree stands filled with large plush hand puppets.  They were lovely and soft, in bright colors and came in a variety of different species, toucans, leopards, dogs cats, horses, as well as mythical creatures and monsters – a favorite of Nic’s.

I thrust my hand in one, a beautiful white unicorn with flowing mane and purple horn, “Emma!  Look!  I’m a unicorn,” I said, in what I imagined a unicorn’s voice would sound like if they existed and could talk.

Emma showed no interest.

The one toy Emma was attracted to was the miniature doll’s stroller, which came in pink and blue.  I placed a baby doll in one of them when I saw her looking at it.  “Look Emmy it’s for the baby doll,” I said.

Emma pulled the baby doll out of the stroller and proceeded to try and sit in it herself.  Terrified that she would break it, I said, “No Emmy!  That’s not for you!  It’s for the baby doll.  You’re too big for this stroller.” Again I placed the doll into the stroller.

Emma threw the doll onto the floor, took hold of the doll’s stroller and careened around the store, heading toward the door.  I chased after her and herded her back inside, admonishing her that she couldn’t go out into the street.  Each time we returned to Kidding Around, out the door she would tear, steering the doll’s stroller around, and a few times into people who were in her path.  It got so that I would block the front door while Nic played in the back, every now and again his little voice calling out, “Mommy!  Emmy’s taken the stroller again!”  I would position myself in front of the only exit, while she would try to maneuver around me, fixated on getting that stroller and herself outside.

“She just doesn’t like toys,” I reported to Richard that evening.  “My sister never played with dolls,” I said when he didn’t say anything.  “Emma’s athletic, just like my sister,” I finished, unsure of why I suddenly felt so defensive.