Category Archives: language

Questions

Last night, just to mix things up, Emma watched Lilo and Stitch.  When Lilo says – Aliens are attacking my house – Emma howled with laughter and then repeated that line several times as she was getting ready for bed.   So here are a few questions I have for Emma that I wish she could answer – Why is that line so funny to you?  What does the word, “alien” mean to you?  If you had the words, what would you say the movie was about?

I realize I sound like an annoying english teacher, but I actually really would like to know what she would say, if she could.  And while we’re at it, here are a couple more questions I’d ask if I could:

What do you hear?  Do you hear what I hear or is it different for you?  Is the pitch different, the volume, do other sounds compete with each other?  Is it hard to tune some noise out and concentrate on the person who’s speaking to you?  Is all noise equal?  What do you see?  Is it just like sound?  Do you see patterns?  When you look at your box with hundreds of photographs, do you see the images or do you see a pattern or do you see something else and if you see a pattern, does that pattern soothe you?  What is it about the string you like to hold and twirl, why do you like it?  What does it feel like?  What do you think about?  Do you have questions, but don’t ask them because you don’t have the words?  Do you understand the larger concepts of a story?  A movie?

Finally, the ultimate question, the question I will never know the answer to, even if Emma is one day able to answer all the questions I’ve just listed:

What’s it like to be you?

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Pooh Bear and Emma

Often before bed Emma asks if she can watch one of two movies – Mary Poppins or Winnie the Pooh.  She has been watching these same two movies for the past five years and in the case of Winnie the Pooh, going on eight years.   Typically we tell her she can watch whichever movie she’s chosen for twenty minutes or so before bedtime when I read to her.  Last night she chose Winnie the Pooh.  I sat next to her, but wasn’t really paying attention as I was reading an email, when I realized she was talking and looking over at me.  This was unusual.  Emma will often repeat much of the dialogue, particularly her favorite parts of the movie which, having watched literally thousands of times, she has memorized.  But last night she wasn’t just repeating the dialogue.  Last night she was talking – about the movie – to me!

It took me a couple of seconds to understand what she was saying, but it went something like this.

Emma laughing.  ”He’s stuck!”  More laughter.  ”He can’t get out.  Ooof!  Pooh bear is stuck.  Yeah.  He cannot get out.”  Emma points to the screen while looking at me.

I look at the television, inwardly feeling nothing short of elation that she is initiating contact, that she wants to share her amusement at Pooh’s predicament with me!  ”Oh no!  You’re right.  He’s stuck.  He ate too much honey.”

Emma nods her head.  ”Don’t… feed… the …bear!” she shouts at the same time that Rabbit says this while pounding a sign with these words into the ground with his fist.  ”Rabbit’s angry!”

“Yes, he is!  He doesn’t want Pooh stuck in his house.”

“Pooh can’t get out,” she says, laughing.

“Pooh was so hungry, he ate and ate and ate all of Rabbit’s honey.”

“Now he can’t get out.”  Emma says, watching the television.

“He ate so much, his belly got so big, now he’s too big to get out.”

Emma shrieks with laughter.  ”Oh no! Oh no!  I’m stuck!”

“You aren’t stuck, Em.  Who’s stuck?”

“Pooh’s stuck!”

This continued throughout the entire scene until Pooh gets thin enough that he can be pulled out.  While Christopher Robbin and the rest of the animals pull Pooh bear, Rabbit pushes him from behind and he finally shoots out of the hole like a cannonball and lands inside of a tree, which just happens to be filled with honey.

“Pooh’s eating!  He likes honey!”  Emma says, pointing to the part when Christopher Robin says – Don’t worry Pooh.  We’ll get you out!  (of the tree) and Pooh says, through mouthfuls of honey – Don’t hurry!   Yum!  Yum!

Emma thought this hilarious.  ”Oh no!  He’s stuck again!”  Then she collapsed into a fit of giggles with her hand on my arm.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

“Thriller”

For Emma’s birthday, Joe gave her a video montage with Michael Jackson’s incomprehensible song – Wanna Be Startin Somethin – playing in the background.  Emma loves playing the DVD and calls it – “Thriller.”  Despite our corrections, she is resolute.  Saturday night she put the DVD into the player and then said, “Halloween!” and ran to the costume chest.  ”Want to put on halloween costume?”

“But, Emma it’s not halloween,” Richard told her.

“I think she wants to put on a costume like she does on halloween,” I said.

After a good bit of rummaging around, Emma pulled out a costume, ran to her room and several minutes later burst forth wearing this…

“Watch Thriller,” she announced before settling down on the couch to watch the video montage Joe had put together for her.

*Just in case anyone is curious, we correct Emma when she makes these types of grammatical errors.  For example in the above comment, I said, “You want to watch your video?”  To which she responded, “Yes, I want to watch my video.”  With repetition we have seen an enormous uptick in Emma’s spontaneous language as well as an increase in her ability to say grammatically correct sentences without our intervening.  The pronoun confusion, while still present, has gotten much better as well.

Richard and I have a running joke regarding MJ’s lyrics, something neither of us can understand without printing out the actual lyrics, still, as a nod to our advancing years, we use phrases like “new fangled” and “these kids” while shaking our heads.  Thankfully Richard finds all of this as humorous as I do and we have each come up with obviously ridiculous lyrics, which we then suggest are the actual lyrics.  ”Do you think he just sang, go to the post office?”  ”Yeah, post a letter, I’m pretty sure he just sang that.”  So I wasn’t surprised when Richard said at one point, “He just said, “You’re a vegetable.”

“I am not!” I responded with feigned indignation.

“No.  Seriously, I think he just sang, You’re a vegetable.”

“Uh-huh.  Yup.  I think you’re right,” I said, nodding my head and grinning at him.

“I’m being serious.  Do you think that could be part of the song?”

“Oh yeah,” I said with an exaggerated tone, “You’re a vegetable.  I think that has to be right.”

“I’m going to google it,” Richard announced.

A few minutes later Richard returned, “Look!” he thrust a sheet with the lyrics printed on them and there it was in black and white – “You’re a vegetable, You’re just a buffet, You’re a vegetable,  They eat off of you, You’re a vegetable.”

Richard looked at me.

Meanwhile, Emma continued to bop her head up and down as she watched the slideshow of photographs from the past year of herself, that all of us have taken, wearing her witch costume.

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book

Conversing With Emma

“Mommy, I want to make pancakes please!”  Emma said sweetly the other morning.  A simple sentence, no big deal, right?  Except to us it was an enormous deal.  Pronouns all in their proper place and used appropriately, a polite “please” added at the end to ensure a positive response to her request, how could we say no?  And since it was the weekend, we didn’t.  Though we did tell her, she would need to wait a little while, which she did.

Someone, years ago, asked me what I hoped for when it came to Emma’s progress and I responded with something about giving my right arm if she would only ask me for something.  At the time, it was a worthy objective.  Please, just let her ask me for anything and I’ll be happy.  Thankfully I did not have to relinquish a limb for her to get to that point and now those requests have become commonplace.  ”Mommy!  I want to go to the Vanderbuilt Y please,”  ”Daddy, I want to go to the New York Botanical Gardens with just Daddy!” or “I don’t want to eat the pear.  Please Mommy, no more pear!”

Now that we have the “I want,” “I don’t want” sentences, we are moving on to the lofty goal of commenting on surroundings.  ”Oh look, Em!  Look at the bird outside the window!  Do you see it?”  And then we wait.  ”Yes, I see the bird.  There’s a bird flying outside,” Emma might respond or she might then comment on something else.  ”It’s raining outside.  We cannot go to the park.”  The idea of using language as a way to connect, a bonding experience or as a way to share an experience with another person remains somewhat elusive, though she is making strides in that direction.  We are not able to carry on a conversation with Emma yet.  But we hope to get there eventually.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Emma’s Sense of Humor – Autism

Emma’s sense of humor, much like everything else about her, is… quirky.  As a baby, Emma squealed with excitement when we popped out from behind things and yelled, “Boo!”  As Emma grew older she continued to delight in anything resembling silliness.  We were filled with hope when, during one of Emma’s many early intervention therapy sessions, she offered some play-doh to the therapist, only to pull it away just as the therapist reached for it.  Emma howled with laughter as the confused therapist realized Emma was playing a joke with her.

Afterward the therapist made a point of telling us how Emma’s sense of humor suggested tremendous potential, how she was expressing a desire to interact, how unusual this was for a child with autism to want to initiate in such a creative way.  Emma continues to display her silliness and creativity in surprising ways.

Emma with what’s left of her cokie  (this use to be a crib blanket filled with down).

When I came into her bedroom and saw her I said, “Em!  What are you doing with cokie?!”

To which she laughed, “Stick cokie up your nose.”

“That’s so gross, Em!”

“No not going to stick cokie up your nose, stick cokie in your ears,” she replied, still laughing.

“Ew!”

“That’s funny,” she then said.

It reminded me of when we took Nic out to eat at a Japanese restaurant.   “Look Mommy!”  He said as he unwrapped his chopsticks and stuck each into a corner of his mouth.    ”I’m a walrus,” he managed to say.

My grandmother was known for, after a few drinks, rolling a napkin up, and placing it above her upper lip pretended it was a mustache – so maybe it’s genetic and not a display of extreme intelligence after all.  Not that she wasn’t extremely intelligent, she was…

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

Asking – Autism

I remember the first time Emma’s older brother, Nic asked permission to do something.  He was about 14 months old and he asked if it was okay to take a particular toy with him to the playground.  It was noteworthy for a number of reasons, but as his mom, I remember thinking how incredible it was that this tiny child understood that if you asked, rather than just did something, chances were you would be able to do whatever it was.  The whole “polite” thing wasn’t part of the equation yet, but it soon came to be, shortly thereafter.

With Emma it was different right from the beginning.  For one thing, she didn’t ask questions as much as demand that her basic needs were met.  Because her language was severely delayed, she would often drag one of us to the refrigerator and indicate what she wanted.  As she didn’t “want” our attention, toys or many of the things other neuro-typical children do, there was less motivation to ask for things.

As Nic grew older his questions became more complicated and interesting.  Suddenly we were discussing such topics as religion, questioning the existence of God and if there was a God, who made him.  Could there be a heaven without a “God”, why did people die, was there life beyond our planet earth, how did we come to be and what was our purpose, where did the earth come from, how is it possible that the universe is infinite and what does that mean, exactly.  Nic also became curious about Richard and my experiences.  He wanted to know if I’d ever felt scared (yes!), whether I was nervous when in front of new people (often), when did I know what I wanted to be when I grew up (that concept continues to evolve), when did Richard and I meet, and the questions have never stopped.

Emma does not ask questions about life and the world.  She has never asked me a personal question.  But she has learned to ask for things that she needs or wants.  Often the question is a demand with an upward lilt added, making the demand more palatable, as in  - “Go to the zoo?”  ”See the snake bite boy?” “Apple juice?”  However lately her questions have changed slightly.  It’s a subtle difference, but I have noticed it a number of times in the last few days.  This morning she came into the study (this in and of itself is startlingly new as in the past she would simply ask from where ever she was and then when no one responded because no one heard her, she would begin to scream until someone appeared) but today she found me and said, “Mommy?”  Then she waited for me to respond.  When I looked up, she said, “Can I have a caramel yogurt?”  Again she waited for my response.  This too is different.  In the past she might have asked if I was standing nearby and then after uttering the words she would have raced off, not waiting for a response.  The question was rhetorical.

“Sure Em.  Go have a caramel yogurt,” I said.

To which she ran off, only to reappear a few minutes later saying, “Okay.  Last one caramel yogurt?  Eat one more and then it’s all done.”

“Yeah.  Okay, Em.  That sounds good.  Go have another one.”

“Okay!”  She yelled as she went back into the kitchen.

Last night she found me in the bathroom, where I was brushing my teeth.  ”Mommy?”  She waited.

“Yes, Em?”

“Can I watch Winnie-the-Pooh?”  Again she stood looking at me expectantly, waiting for my answer.

“Sure Em.  But first put on your nightie and brush your teeth.  Okay?”

“Okay!”  she said tearing off to change.

I cannot describe my surprise at her actually waiting for me to respond.  This is new and a welcome change.

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

Emma’s Rainy Day – Autism

It’s been raining off and on for the past few days, with more rain to come, we’re told.

“It’s raining,” Emma said last night, while pointing out the window.  ”No not going to open the umbrella inside, you have to wait!  Open it outside.”

“Em, do you want to go outside?”

“Nah!”  She said, laughing hysterically.  ”It’s too dark and it’s raining,” she said.

Then she disappeared into her bedroom only to return wearing this.

“Okay!  Ready for the rain!” she announced, before speeding off on her scooter.

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

Skateboarding – Autism

When Emma was a toddler, she taught herself how to swing by herself.  She thrust her legs out in front of her and then leaned her body forward as she tucked her legs under her.  It was an amazing and beautiful thing to witness.  I remember the first time it happened, we were in the Washington Square playground in New York City.  She pushed me away as she clambered up onto the swing.  I stood just to the side and behind her ready to push, but she shook her head no.  Then she reached down with her toes to the ground pushed off.  A small group of caregivers and parents gathered around as she sailed up higher and higher, so incredible was it that a child of just eighteen months could swing so high unassisted.

That’s how it is with Emma when it comes to physical things.  She has always insisted on doing things herself and while she can take direction, it is often very difficult for her to be taught by someone who relies on verbal explanation.  Emma feels and learns from watching and doing.  So when she put her arm around her brother, Nic the other morning at the skateboard park and said, “Nicky’s turn, then Emma’s turn,” we knew we were going to have to get creative if she was going to learn to skateboard.

We spoke to one of the instructors from Nic’s skateboard camp and arranged a lesson for Emma that afternoon.  When we finally went to meet him, we realized we hadn’t brought sneakers for her to wear and so bought a new pair at the skateboard shop.  They didn’t have any socks small enough for her, so she just wore the shoes without socks, despite my fleeting concern that she would get blisters.  With borrowed skateboard in hand, we headed to the skateboard park, Emma leading the way.

The instructor got her to put on elbow, knee and wrist pads and then together they slid into the bowl to practice foot positioning.  Emma wanted to skateboard though and didn’t want to practice standing on the board.  She wanted to go.

In this way Emma is fearless.

And then the blister on her heel became too painful and she tried to take her shoes off.  From there the lesson took a downward turn and after another ten minutes or so, Emma had had enough.  I am convinced that if we just let Emma experiment on a skateboard for awhile, she’d eventually figure it out on her own.  Just as she did so many years ago on the playground swing, and later with her scooter.  But for now, we will let her dictate how this goes.  If she shows interest in skateboarding again, we’ll try to borrow one for her to practice on.

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

“Go Back” – Autism

Last week Emma began crying and said, “Go back to hotel.”  Richard felt she was missing me, as I had to leave my family to return to Colorado for work when we left California instead of returning with them to New York City.  We also felt she was wishing we could have stayed longer and spent more time with my extended family, all of whom she loves being with.  She had such a wonderful time with so many family present at the Bed & Breakfast in Napa, California where we stayed for my brother’s wedding.

There’s a mistaken thought by many people that because a great number of children and adults with autism cannot express themselves well and often do not show tremendous emotional attachment to those they love, that they do not love.  Some people believe they do not feel the same intensity of emotion that we neuro-typicals do.  I disagree with this thinking.  I believe Emma loves and misses people as much as any neuro-typical child.  I believe she misses them with the same aching as any of us do.  The difference is, Emma doesn’t have the same neuro circuitry or the ability to put into words her feelings.  She lives in a world that must be incredibly confusing so much of the time.

I wonder, when I get on the phone with her, how much does she understand?  Does she understand that I am in Colorado and not in New York with her, Nic and Richard because I have to work?  Because time is a difficult concept for her, does she really understand when I will be returning?  When she wakes up in the morning does she wonder if I might be there only to find I’m not?   Our phone conversations are limited.  When speaking with Nic, I can reassure him that I will be home in another couple of weeks.  We can discuss what he did, he can describe the breakfast he fixed for his dad yesterday for Father’s Day.  We can talk about things.  With Emma, who does not and cannot ask questions, I ask – How are you?  She tells me she’s fine, even if she isn’t, because it’s the conversation we always have on the phone.  She may add some random thing such as – “Seal park, Chelsea piers carousel” and I can deduce that Richard took the children there yesterday.  I always ask her – What did you do today?  To which I can receive an accurate list of what she did, but just as easily I can receive a somewhat confusing version of events that may or may not have taken place.  I then will verify with Richard to get a clearer idea.

Yesterday was Father’s Day and Richard spent it with the children.  There was no sleeping in for Richard as I’m not there to give him a break.  Nic made him a special breakfast and then Richard took the children to various parks.  I know it wasn’t the day Richard would have liked.  I know how hard it is being the sole parent taking care of everything, especially for such an extended period of time.  And particularly tough when it’s a day designated to celebrate fatherhood.  When I spoke to Emma yesterday I said, “Be sure to tell Daddy – Happy Father’s Day and give him a hug, Em.”

“Happy Father’s Day,” Emma said into the phone.  I have no idea where Richard was or if he overheard her.  I can only hope he did.  I know Emma loves her dad.  She isn’t able to express it in the typical ways we are used to, but she does.

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