Category Archives: language

A Conversation in the Car

Because Em has just brought in the timer and set it for ten minutes, this will be quick!  Kind of like speed posting.  (Post on Markram interview will have to wait yet another day!)

I posted the following conversation on Emma’s Hope Book page on Facebook last night.

Driving home from the swimming pool. Nic and Em in the back seat. 

Nic: Em stop it.

Em: Cha, cha, cha

Nic: Mom! Make her stop. She’s doing that just because she knows how much it annoys me!

Em: Cha, Cha, Cha

Me: Turning around to monitor the situation  Okay, Em. What are you doing?

Nic: She’s trying to bug me!

Em: Grinning  Cha, cha, chocolate milk!

Me: Oh my god, that’s hilarious. Richard! Putting my hand on Richard’s shoulder.  Did you hear that?

Richard: What? What happened?  Looks in rearview mirror.

Em: Laughing  Cha, cha, cha, chocolate milk

Nic: She just changed it so you guys wouldn’t make her stop!

Em: Leaning toward Nic, gets right in his face  Cha, cha, cha, chocolate milk!

Nic & Em begin laughing hysterically.

Not only was the above conversation noteworthy because this type of interaction between Nic and Emma is not typical, but it was also worth mentioning because of Em’s increased interest in word play.  I see this in her desire to play Duck, Duck, Goose where she comes up with different word associations.  Sometimes, as in the case of “China boat, china boat, ocean!”  I’m not clear what the word association is, but I no longer doubt that there is one.

Emma eating her cake

Cloud cover over the Rockies

Walter and friends


Posting Under Pressure

I’m working on a post of my interview with Henry and Kamila Markram when I was in Jerusalem attending the ICare4Autism Conference.  Henry and Kamila Markram are the neuroscientist team who created The Intense World Theory For Autism.  I am trying to finish that for tomorrow’s post.  However, Em is up right now and insisting I made cake with her and that takes precedence over this post getting written.   Besides she has a timer which she’s just set for fifteen minutes.  She started with three minutes, but I’ve negotiated for the fifteen, so I’ve got just enough time to post these photos…

Say hello to Walter.  Yup, he’s one of three bucks who lives next to the barn.  And yes, my cousins named him…  Walter, after my grandfather.  Yeah, I know.  It is a specific sense of humor.  And yes it appears it is genetic.

The teepee that has been on the property since the 70’s or maybe even the 60’s, I can’t remember.  I just know it’s been here almost as long as I have been on this earth.

The dogs – Folgen & Gaia – who love nothing more than to have their frisbee thrown to them.  Emma likes it when I throw their frisbee too.  They just don’t like giving it back to me so that I can throw it again.  Which leads to lots of yelling, “Drop it!  Drop the frisbee!”  And then they do this…

And when they’ve had enough running after the frisbee they take it far away and guard it.  Like this.

We have been playing some massive games of Duck, duck, goose and even Granma has started to run when picked.  My brother and sister-in-law are here so  the game has become a nightly event with lots of laughter and shouting, “Hurry, hurry, SIT, SIT!”

Emma waits to be chosen…

Nic has mastered the art of driving the 4-Wheeler and now takes Em around the ranch.

Em takes the Alien swimming

Whew!  That’s it, I’ve got 42 seconds to hit the “Publish” button!

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Emma Takes Mom on An Awesome Adventure

Yesterday Em asked to go to Victoria Gardens, the amusement park, that each summer transforms the ice skating rink  in Central Park into a kid’s idea of heaven.  “Sure, that’s a good idea,” I told her.
“Take the F train,” Emma announced and began to walk purposefully toward Sixth Avenue.  “But the F doesn’t take us to Columbus Circle.  Why don’t we take the 1?”  “Take the F train,” Emma said matter-of-factly and continued walking toward Sixth.   Once on the train Emma found a single vacant seat in the crowded car and said, “Oh no!  There’s no seat for Mommy!  Mommy has to stand.”  The man sitting next to her immediately got up with a guilty expression and offered me his seat.  “Oh no, that’s alright.  It’s no problem,” I tried to assure him.  But he refused to sit back down, further humiliated, no doubt, by Emma’s interjection of “Oh Mommy cannot sit down next to Emma!”  (Clever girl, I thought to myself, and I’ll admit, with a tiny bit of pride.)  Even though that poor man who gave up his seat had no way of knowing that Emma actually prefers I stand and not sit next to her.  It’s become something of a game, with Em saying in a pretend sad voice, “Oh no!” but then when I sit next to her she pushes me or tries to get me to sit across from her.   (Making me all the more determined to get Emma some theatre training.)

When the train pulled up to Rockefeller Center Emma stood up and said, “Have to take the D train.”  I know enough not to argue with Emma because there are a number of things Emma knows better than anyone and one of them is how to navigate the labyrinthine maze that is the New York City subway system.  Except that when we arrived at Columbus Circle Emma stayed put.  “Hey don’t you want to go to Victoria Gardens?” I asked.  Emma grinned at me and said, “Go fast!”  Then she shook her head and said, “Train goes fast, fast, fast?”

“You want to stay on the train?”

“Yes!”  Emma said.  So we did.  As we sped past each stop Emma shouted out, like the seasoned guide that she is, a specific playground or significant landmark.  “Oh, there’s the American Museum of Natural History!  Oh there’s the tar playground! Oh there’s the …”  We raced along until 125th Street where Emma then led me off the train and walked over to the tracks heading back downtown.  “Where to now Em?”  I asked, having decided after we left the house that Em was going to direct the day, I was very much the passenger along for the ride.  And what a ride it turned out to be.

We eventually made it to Victoria Gardens, but not before we stopped at another large playground and ran through various sprinklers, went through a tunnel, listened to a musician playing his Saxophone, past the artist who’d set up shop  face painting small children to look like fairies, goblins and ghouls.

After several hours at Victoria Gardens we took more trains downtown, transferring so many times I can no longer keep our route in my head, but ending at Seal Park where I ran into one of my close girlfriends and her son.  Another hour and then Em said, “Now go to Chelsea Market!”   Off we went, with Emma lacing her arm through mine and occasionally she’d press her soft cheek against my upper arm.  Emma talked about the new school she will be attending in the fall, she listed all her friends, teachers and therapists, “Justus is gone, Sol is gone, Charlie is gone, Lauren is gone, Miriam is gone.  Emma goes to new school!”  (I’ll write a separate post about that another day.)

Upon our arrival to Chelsea Market Emma raced to the water feature and began to point at various things that she wanted to know the name of.  We discussed how there were wooden planks on the floor and what was under those planks – maybe a hole, darkness, who knows?  She tested the plank by sliding her foot through the guard railing and pressing down on it.  She pointed to the water gushing from a large pipe overhead.  We discussed where the water might come from, “Ocean” was Emma’s guess, and it did have a briny smell, either that or the Lobster Place and Seafood Market just opposite was giving off the distinct scent of salt water and fish.  Emma pointed to the large pipe and we walked around to the other side, following the pipe.  A huge wheel hung from the pipe and Emma said, “I can’t reach!  Have to get a ladder to turn the water off.”

This conversation with Emma was revelatory for many reasons, but most importantly it was the first time I have had such a lengthy conversation with her about something that did not have to do with a want, desire or need.  She was curious and though she spoke cryptically throughout our conversation leaving me confused as to what she was saying or asking, it was fantastic.  “Plank fall in,” she said at one point pointing to the water.”  And then again pointing up at the pipe, which I didn’t understand, making me wish I could put the pieces together.  I have been unable to find out any more about the water feature at Chelsea Market, having spent some time on google when we returned home.  I tried to find out the source of the water, does it ever get turned off, is it recycled, etc. so that I could tell Em more about it.   She was curious, engaged even mesmerized.

Eventually we headed back home, but not before we stopped at one last playground to run through the sprinklers!

When we arrived home, Em said, “We have to call Daddy!”  It was just one more first in a whole day filled with them!

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The Beauty in a Conversation

Emma and I are heading out to Fire Island this afternoon with my friend, Bobbie.  This has been cause for great excitement as Emma has counted the days until we leave.  Last night, Emma and I had the following conversation.

Emma:  Go to take Bobbie at the beach!

Me:  Yeah.  Are you excited?

Em:  Yeah!  So excited to see Bobbie and Mina and Luca.  Going to go in the ocean.

Me:  Yup, we can go swimming and…

Em:  (interrupting) Going to go play in the sand.

Me:  Yes.  We’re going to spend the night.  We’re going to spend two nights there.

Em:  (Holding up her fingers) Three minus one equals two!  Having a sleepover with Bobbie at the beach.  Going to bring Cokie!  (Cokie is a scrap of what was once a blanket, measuring about five by three inches and is constantly getting lost leading Emma to panic.  We live in dread of this last large scrap one day mysteriously disappearing into the great dark unknown along with the rest of her blanket.)

Me:  But Cokie has to stay in your bedroom.

Em:  Cokie get lost!  Ahhhhh!  Who took it?  Somebody threw it away.  They threw it.  You cannot throw Cokie.  (All of this was said very quickly in an animated voice, it’s a kind of scripting, but it’s within a context in that Emma is expressing her fears and anxiety that her blanket might get mislaid.)  No, not going to bring Cokie into the water.  You can’t bring Cokie onto the beach, that’s silly.  Cokie might get lost!  Cokie will get dirty.  Ick!  Cokie has to take a bath!

Me:  You’re funny.

Em:  (Laughing)   No.  Not going to put Cokie in the washing machine!  It’s too little.  No, not going to put Max in the washing machine, he’s too big.  Max can’t breath.  You have to pull him out.  That’s too small!

Me:  Do you think we should wash Cokie before we take it to the beach?

Em:  Nah.  Have to gotta go.  Max came to the book party.  You hit Max.  You pull Max’s hair.  No.  You cannot pull Max’s hair.  You have to stop.  You can’t do that.  Max is hurt!  (This is another script, but it’s one she made up and it’s really a spoken memory of Richard’s book party celebrating the publication of his novel a month ago.  Max is a great friend and someone Emma adores.  When Emma really likes someone she wants to pull their hair and hit them.  She is still trying to sort out how to resolve some of these impulses while also connecting and making physical contact with another human being without hurting them.  We are working on this.)

Me:  Yeah.  That’s really hard, isn’t it Em?

Em:  Makes me so frustrated! Grrrrr!

Me:  (Laughing)  Do you feel frustrated now?

Em:  Nah!  Emma’s happy!  Going to go with Bobbie to the beach.  Going to have so much fun!

Just before I had this conversation with Emma, I was talking with my friend Ib.  She said, “It is easy to picture Emma talking more.  She can still be her if she does.  She will talk oddly about odd things that she blisses out about while twirling string, and walk away mid sentence.”

And I wrote back, “Yeah, and I’ll (removed explicative) love that!  Seriously love that!  Because I want to walk away in mid sentence half the time…”  Ib then wrote back “And frankly, in your family, it won’t be that odd.  Hehe.”

Which made me laugh out loud and filled me with so much hope and happiness with the thought that Em and I could converse the way Ib and I do.  And then Emma came home and I told Ib I’d talk to her tomorrow and Emma and I proceeded to have the conversation I’ve transcribed above.

Yup, there are little miracles happening all the time!

Have a wonderful weekend everyone!  The journey continues…

Finding Ways to Connect With Other Human Beings

I have a relatively new friend.  We’ve been talking a few times a week.  She makes me really happy because she’s funny, smart and kind.  You know that magical feeling when you connect with another human being?  Someone who is special?  It’s a deeper bonding than with most people, you can’t explain why that is, you just feel it and it’s mutual.  I feel safe enough to confide in her.  I’m pretty sure she feels the same.   When we aren’t talking I think about her.  I wonder how she’s doing, is she okay.  And then one of us reaches out to the other and we start talking.  Only with my friend we don’t talk in the conventional sense, we type back and forth in real-time.  My friend reads very quickly, she’s hyperlexic; if I mention something that she hasn’t read, she’ll zip off and do a little research while I’m still typing out a sentence.  Then she’ll reply with the knowledge of someone who knows, but didn’t in the previous sentence.  It makes for an interesting conversation.

As a teen she had alexithymia.  Meaning it was difficult for her to use words to describe the emotions she was having, as well as understand other people’s emotions, which combined with her literalism, caused a great many problems.  So yesterday she was telling me about how she used echolalia and physical actions as a way to connect, but it didn’t always work out so well.  People misunderstood her.  And I thought of Emma.  Because Emma doesn’t have the language to describe her more complicated feelings.  So when she wants to connect, she’ll hit or she’ll say, “No, you cannot pull Mommy’s hair.”  Which means that she’d like to, but she knows she shouldn’t.  At her school she pulled her friend’s hair and was punished.  Emma knows this is something that while she enjoys doing it, the recipients often do not.  That must be very confusing to her.  Emma will say things like, “No you cannot pinch Mommy.”  Then she’ll look at me with a mischievous look and will wiggle her fingers at me as though she were about to pinch me.

“No Emmy!  Don’t pinch Mommy!”  I tell her.

Emma thinks this is the height of hilarity and will say again, “No.  You cannot pinch Mommy!  Pinch Mommy!” and then as though the feeling is too powerful for her to control, she will.

“Ouch!”  I will say.  And Emma will double over in laughter.

Last night we went out to dinner in town.  It’s very warm here, so we sat outside.  One of Emma’s favorite games is to pretend to give me a shot.  She “washes” my upper arm by rubbing it with her hand and then pinches me.   “Swish, swish,” Emma said, while pretending to put a band-aid on my arm.   “Now you do it,” she said, covering her eyes with one hand, while offering me her arm.  We play this game often.  It is also her way, I think, of working through her fear of having a shot or the finger prick they sometimes do at the doctor’s office.

Yesterday as my friend and I were talking I realized something else.  Emma is doing these things, punching, pulling hair, pinching, because she wants to connect, she wants to get a response, she wants to interact.  It’s not just a one-sided gesture.  She is trying, in the only way she knows, to make contact.  Sadly her gestures are often ignored or she is told no, she cannot do that, so she is then further limited.  She doesn’t have the words, she cannot always make sense of what she’s feeling, but she really wants to interact, to develop a method of “talking” with another person.  She’s doing the best she can with the limited tools she has at the moment.

I realized I needed to help her find physical ways to connect that will not be perceived as “harmful” by the other person, but that are also meaningful to her.  I will have to speak with my friend about this, because she will undoubtedly have some good ideas, besides I haven’t spoken to her in at least 16 hours and I already miss her.

Last night at the restaurant, Emma wearing Richard’s hat

This morning – sunrise on the ranch

Is There A Future for Emma in the Theatre?

Yesterday, as we were leaving Nic and Emma’s gymnastics class, Emma found a stray balloon.  No doubt left by one of the children who attended a birthday party there earlier, Emma looked at me with a sly grin, then grabbed the balloon and said, “Look!  It’s a birthday party balloon.  Take it home?”

Emma loves nothing more than birthday parties, balloons and singing Happy Birthday.  “Sure Em.  But remember to hold on to it, because if you let go, it’ll fly away,” I said.

Emma nodded her head gravely and said, “You have to hold it.  If you let go, the balloon goes up in the air.  Oh no!  Don’t go away balloon.  You have to hold it.  But listen, if you let go, there will be no more balloon!”

Emma’s way of coping with anxiety is to repeat a script of sorts.  These are things she’s heard from a variety of sources.  She pulls together threads and combines them to make a dialogue that she then repeats.  Many Autistics script.  Some people feel scripting is to be ignored and even discouraged, but I find Emma’s scripts are informative and useful.  It is the way she is attempting to communicate.  I don’t believe they are nonsense or meaningless.  I believe she uses them in situations when she cannot come up with words of her own.

Emma managed to get through the next four hours without losing the balloon.  This was no small accomplishment as those four hours were packed with activities, ranging from shopping for shorts and an awesome camouflage swim cap for Nic, bathing suits for Em, swim goggles for me, ear plugs for all of us, slices of pizza for everyone, before meeting Richard at the local Y to swim.  Emma attempted to jam the balloon inside our locker, (we ended up letting it float outside the locker, with the string inside the locker ensuring it wouldn’t float away.)  After swimming we went to a room where they’d set up an obstacle course and bouncy castle.  Meanwhile Emma’s balloon, which she’d secured inside my swim bag, stayed put.

Once outside as we headed home Emma suddenly gasped.  All of us watched with dread as her beloved balloon sailed out of reach.  In the past, losing her balloon would have induced a meltdown of epic proportions.  “Oh no, my balloon!” Emma said, her tone and inflection sounded vaguely familiar.  Emma stomped her foot and said again, “Oh no, my balloon!  Can you tell how Katy feels about losing her balloon?  Yes, Katy is mad she lost her balloon.  We can tell she’s mad because she’s raising her fist and stomping her foot.”

I looked at Emma in shock. Emma was repeating the dialogue from an app Marc Zimmerman, CEO of the app The Social Express Lite sent me more than six months ago.  At the time I showed it to Emma who liked it and watched the five different lessons a couple dozen times and so a few months later, I bought the long version of the Social Express, but other things took precedence, so it was soon forgotten.

“Emma lost her balloon,” Emma said looking at me as I awaited the meltdown I was sure would come.  Instead, Emma stood still, gazed up at the balloon floating farther and farther away and said, “Emma’s mad she lost her balloon.”  Emma stared at me for a moment and began to laugh.

I was amazed.  This was NOT the reaction I expected.  “Katy’s mad.  Emma’s mad,” Emma laughed.  She gave me her pretend “mad” face –  frowning, mouth set in a silent scream – and dissolved into peals of laughter.

I was reminded of a conversation I had with a friend of mine (who’s autistic), just two days ago.  She told me how going into a theatre program changed her life.  She told me how theatre taught her a range of things, including an increased desire to read because there was a reason to,  she learned how others thought and what motivated them.  She said, “In theater, everyone is honest, they have to be.  If they are not, the director says, No, be honest.”

“I am determined to find a theatre program for Emma,” I said to Richard.  “I think it is the thing that could change everything for her.”

“I’m with you,” Richard said.

When we got home Emma and I watched the Social Express together.  When the story with Katy losing her balloon came on, Emma pointed to the screen.  “Oh no! Katy lost her balloon too!”

And she began laughing.

Emma demonstrating her angry face

“Come Dance With Me!”

Those were Emma’s exact words.  She beckoned to me, then to her brother, Nic and then to her dad.  “Come on.  Come dance with me!”

This sort of utterance is something we have waited for, helped Emma with, hoping that one day, some day she would say something like – “Come dance with me.”   For those of you who know all about the issues of pronoun reversal, the difficulties in initiating and maintaining interactions, the challenges of expressive language and the importance of Emma’s words, skip down to the last paragraph, but for the rest of you, stay with me as I try to explain.

A defining characteristic of autism is pronoun “confusion/reversal.”  I have problems with the “confusion” assertion, as it seems pretty clear to me that when Emma says “Do you want pancakes?” she knows I don’t want pancakes, but is expressing her desire to have pancakes.  Either these are the words she would like me to say to her or these are the words she can locate to express her desire to have pancakes.  I don’t think Emma is “confused” about who loves pancakes.  I don’t for a second believe that when she asks such a question it is her intention to invite me to eat pancakes, while she foregoes eating them herself.  So no, I think that part of the whole “confusion” piece is actually incorrect.  However, I do think the idea that when speaking English, she is “me” when referring to herself and I am “you” when she is speaking, but that that is reversed when the other person speaks, is confusing.  And if you aren’t confused yet, try explaining all of that to someone whose first language isn’t a spoken language.  And after you’ve tackled that, move on to possessive pronouns.   Good luck to you, good luck.

One of my favorite quotes from someone I know who is Autistic is:  “My first language is written, my second is music, my third is math and a distant fourth is spoken.”  It perfectly describes that person’s loves, challenges and neurology.

Emma voiced her desire to have us dance with her, not simply asked that we watch her perform (something she also loves to do) but wanted to dance together, is also worth mentioning.   All of us love to dance.  When I was single and in my twenties, I used to go to Studio 54 with my girlfriends.  Our preferred night was Sunday as it was designated “gay night” with the best music and we knew we could dance all night without worrying about guys hitting on us.   Let’s just say –  the apple doesn’t fall far from the tree.  Still, dancing by yourself is one thing, it’s quite another to invite a group to join you.  For Emma, it was even more significant as parallel play is the norm for her, though recently we’ve seen an increase in her desire for interaction and playing games.  Interacting requires much more expressive language and an ability to tolerate a lessening of control over any given situation.

So last night we danced.  First to Gwen Stefani, then Michael Jackson, back to Gwen Stefani and Emma, ever the dancing DJ, even threw in some Lady Gaga.  It was a great night.

*I have been trying to figure out a way to work into this post the photograph below.  No opportunity presented itself, so I’m just going to post it, completely off topic, but it was too good to pass up.  Emma is terrified of dogs.  Even this dog.  He was adorable.  “Emma don’t you want to pet him?  Look how cute he is.  Don’t you think he’s cute?”


But he really was cute, don’t you think?

Read My Fear Toolkit published in the Huffington Post

“Six and Three and Zero”

We are working with Emma on time.  For the last few weeks she has been waking at 5:30AM.  I’m just grateful she isn’t also waking us at 2:00AM.  It’s all relative.  She has an analog clock in her room and we’ve discussed how she isn’t to wake us until 6:30AM.  Two nights ago she appeared at exactly 6:30AM.  “It says six and three and zero,” Emma announced before claiming her place next to me in our bed.

This morning however she appeared at 5:30AM and when I said, “Hey Em.  It’s too early. Look at the clock. Do you see what it says?” she didn’t answer.  “Look Em.  It says five thirty.”  I sat up and pointed.  “You have to go back to your room.  You can come back when it says six thirty.”

“Six and three and zero,” Emma confirmed.

“That’s right Em.”

Moving very slowly, she wandered back to her room, or more accurately, out of ours.  When Emma reappeared later she said, “Make cereal and toast?”  Then she corrected herself, “Dadddy?  I’d like to make cereal and toast, please.  May I have some cereal and toast?”

After breakfast she ran back to find me.  “Mommy!” she said bouncing up and down.

“Hi Emma.  I’m coming out.  I just had to take a shower.”

“Mommy!  I miss you,” she said, leaning her head into me.

“Oh Emmy!  I miss you too.  Whenever I’m not with you, I miss you!”  I told her.

She beamed at me.  “I miss Mommy.”  Then she pointed at me and said, “Mommy and me,” she pointed to herself, “go into the living room together.”

“Yes.  I’m coming.  Do you want to wait for me?  I’m just getting my shoes on.”

“I’m waiting,” Emma said.

I live for conversations like this.  I take for granted so many things, little quick conversations I have hundreds of times throughout a day, and yet, this one with Emma will carry me through the day like nothing else could or would.

Waiting for her school bus.

For my latest piece in the Huffington Post, click ‘here‘
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On Autism, Honesty and the Art of Not Yelling

Be honest.  This is what Richard reminds me when I feel stuck.  Whether its regarding my writing or when we are discussing something that is difficult or when I simply feel confused.

Be honest.

Sometimes it’s easy, like when I feel sad and a little frightened that Richard threw his back out again and is in so much pain he can barely walk or I’m annoyed because while waiting for the subway this morning a woman cut me off and sat in the only vacant seat, forcing me to stand or how happy I felt last night when Nic asked me to watch an episode of ‘Chopped’ with him and then pulled a blanket up around us both and said, “I love this, Mommy.  We’re having a son and mom moment.”  Or the sadness that tempered that joy because my next thought was – Emma cannot say that, does not say that, has never said that and then scolded myself for having had that thought because Emma can and does talk, while so many other kids cannot speak, let alone express more complex thinking.

Be honest.

Sometimes I just want to yell and say exactly what comes to mind, because, after all, wouldn’t THAT be more honest?  I already know the answer.    Not yelling is highly underrated, it seems to me.

Be honest.

I want people to love Emma exactly as she is.  I want people to understand when they meet her that in her short life she has already known more pain and discomfort than any young child should have to feel.  I want people to speak to her as they would any ten year old and not like she’s an animal.

I want people to be nicer to each other, which means I have to do my part.  A recent study came out saying autism may be due to older male sperm.  That evening I said to Richard, “Well that gets me off the hook.  It turns out all of Emma’s suffering is your fault.  It’s a huge relief.”  Luckily Richard loves me anyway, even when I say things like that and replied, “I’m so glad I could help you out with that, honey.”

And he did and does.

I’ll end with the conversation I had with Emma last night, showcasing her negotiating skills, inherited from her amazing dad.


“Yes Emma?”

In a sing-songy voice, she said, “Mommy takes me to the zoo tomorrow?” (It’s from a picture book entitled Going to the Zoo, from the Peter Paul and Mary song of the same name.)

“Not tomorrow, Emmy.  I can’t take you tomorrow, but you and Joe could go.”

“No!  Just Mommy,” she pointed to me and then pointing to herself, she added, “and me.  Go to the zoo together.  Maybe this weekend?”

“Yes.  We can go this weekend.”

“Just Mommy.”




“Time to read a story now.”

“Okay, Em.  I love you.”

“So much.”

(As my mother pointed out after I posted this, this conversation was a perfect demonstration of Emma expressing her desire for a – Mommy and daughter moment!)

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special, click ‘here

Soap Suds, Jokes, Literalism and Autism – Stir

A couple months ago as I was standing outside the shower coaching Emma who was inside the shower, I said, “Okay, good, Emma.  Now wash the soap off.”

Dutifully Emma took the bar of soap in her hand and held it under the shower spray.

That action is pure Emma.  And it is also pure autism.  It’s both and they are inextricably bound together and enmeshed.  So when people say – I love my child, but I hate their autism – I know what they mean, I know they love their child completely, I know they are expressing their frustration and sadness that their child suffers in a variety of ways because of their various sensory issues and difficulties with language causing them to be self-injurious, tantrum and feel untold frustration.  I know what they are trying to say, but I don’t believe we get to pick out the “autism” piece and remove it.  Autism is like an ingredient added to a recipe.  Thinking that we can find that one ingredient mixed in with everything else will be a painful and ultimately destructive pursuit.  The ingredients are all stirred together and together they are what makes Emma, Emma.

It helps me to clarify in my mind what I want to help Emma with, by being specific.  Such as – help her learn how to cope better when she is overloaded sensorially, help her with transitions, push her to work on her reading, writing, typing skills, math.  Help her understand the concept of time and money (these are future goals, we are certainly not there yet.)  Help her with comprehension and grammar.  Help her find alternate ways to cope with her frustrations.  Help her when she feels the need to hit herself or bite herself. All of these things are what I try to help her with.

That literalism, (something I share, by the way) is as much a part of Emma as anything else.

The other day Nic and Richard were laughing over some joke.  “What’s so funny?” I asked.

Nic looked at his dad and gave him a look.  A look that said –  Should we tell her?  Should we bother, cause this could take some time.

Richard smiled at me and told me the joke.  When I didn’t respond immediately Nic began to try and explain.  “Get it?”  he ended.

“Um.  Okay.  But I still don’t get why that’s funny.”

Again Nic tried to explain, until I interrupted him, “No I understand what the words mean, I just don’t get why that’s funny.”

“Oh poor Mommy,” Nic said giggling and rolling his eyes at his dad.  Then he patted me on the head!

My inability to understand all but the most obvious jokes has become, in and of itself, a running joke.  I rarely tell jokes because I can’t remember them.  I can’t remember them because most of the time I don’t understand why people think they’re funny.  I just don’t get it.  So when Emma thrust the bar of soap under the spray of water, I got it and I was filled with admiration.  No, I’m not kidding.  I really was.  We say all kinds of things that “literally” don’t mean what we mean.  As Emma did as she was told, I amended my comment, “Hey Emmy.  Wash the soap suds off of your body.”

And so she did.

To read my most recent Huffington Post, click ‘here.’


“Minus One Equals Zero”

Emma reached for the last bag of Pirate’s Booty yesterday and said, “Minus one equals zero.”  Then she grabbed the bag and ate it’s contents.

I am constantly impressed with Emma’s mind and creative use of words.  I often think when I listen to her that there’s a kind of poetry in the way she phrases things, the way she will use seemingly unrelated words to describe something, such as “motorcycle bubbles” for the fireworks we see over the fourth of July.  It conjures up the noise, which she finds frightening, but also the visual image of bubbles, which I think she likes.  I don’t know if this is what she thinks of when she uses those words, but to me, it’s beautifully descriptive in a nuanced and personal way.  It’s very “Emma.”

When Emma and I did some literacy work yesterday, she was having a terrible time with a story we read and that she had to summarize.  I mentioned to Joe that we had a tough session, so when he worked with her later he used no verbal language and she was able to fly through the work.  During my session with her I was reminded of a post I read recently, written by an autistic adult who described how one day conversing and finding the correct words came relatively easily, but the following day, or even that afternoon, she found it almost impossible to express herself verbally.

I have become much more aware of Emma’s sensory issues in the past few weeks from reading other blogs written by autistic adults.  I have certainly been aware that Emma had to deal with a sensory overload, but how that manifested itself, what that actually meant to her was something I had trouble understanding.  But reading what it’s like for some other autistic people has been enlightening.  This is one of my favorite posts on the subject of language and words.  It is written by E. who has a blog – The Third Glance.  The post is entitled – Words.

Another post – Squawk? by Square 8 is another wonderful description of how talking can be akin to walking through a minefield for many on the spectrum.  Sadly this blog’s last entry was in November 2010.

Minus one equals…

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

Buffalo H & Buffalo J

When we are in Aspen we stay on our ranch.  It is no longer a working ranch, but my mother and her sister built houses on it, separated by a stretch of dirt road.  You can’t actually see either house when inside one or the other, which is wonderful as each have views of the mountains, but they are close enough that you can walk from one house to the other.  Or as is the case with the children, they run.  Except in the summertime when one of us will yell after them, “Remember if you see a bear, don’t run!”   This comment usually elicits a dramatic display of bravado with the children demonstrating how they would raise their arms while yelling loudly until the bear wandered off.  We are hoping the bears are still hibernating, though it’s been so warm they may be out and about, it’s hard to say.  Yesterday afternoon, Emma and Nic went over to their cousin’s house and spent many blissful hours playing.

At one point Emma stopped, looked up at the enormous buffalo head situated in her cousin’s living room and said, “Buffalo head!”  Joe, who was standing nearby confirmed that it was in fact a buffalo head.  To which Emma replied, “Two buffalo heads.”

“No, Em.  Not two.  Just one.”  Joe pointed to the buffalo’s head.

“Two,” Emma said matter-of-factly.  Then she pointed to the house that was once owned by my sister, just up the road and said, “Buffalo H and,” she pointed back to the buffalo above her, “Buffalo J.”

I realize this story requires some explanation – my cousin’s name is Jennifer and the last name of the people who bought my sister’s house is Hunt.  When my sister moved out, she left the buffalo head hanging above the fireplace and when the Hunts moved in they decided to leave it there.  As we are good friends with the Hunts, who also happen to have two boys Emma and Nic’s age, we have been over to their house many, many times.  Hence Emma’s designating their buffalo as “Buffalo H.”

Excuse me while I bask in the glow of my child’s brilliant mind.

Neurotypicals =  The art of small talk, Kim Kardashian and Snooki.

Autistics = Einstein, Mozart, Nietzsche and Isaac Newton.

‘Nuf said.

Buffalo J.

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

Greeting Granma

Friday we arrived safely in Aspen, or as Emma described it, “We have to take two planes, then get to see Granma!”  Despite my reservations about not having any seats together, people were kind and accommodating, several happily moved for us and we ended up all together.  I didn’t have to plead with anyone, or explain; I think this was a first!

Upon our arrival Nic and Emma ran ahead, first Nic flinging his entire body against my aging mother with all his might, so happy was he to see her and then Emma, more timidly perhaps, but with no less excitement wrapped her arms around her granma and hugged her.  We have been through this routine dozens and dozens of times, taking two airplanes, arriving in Aspen, my mother always there at the airport to greet us and never has Emma greeted her granma like this without at least some prompting.  My mother looked up at me with her beautiful smile and said nothing.  She didn’t need to.  Emma was now holding one of her arthritic hands and exclaiming, “Oh, Granma hurt her fingers!”  But instead of then racing off or letting go, she continued to hold her granma’s hand, tenderly examining her arthritic fingers, the same misshapen fingers my grandmother had, that as a child, I too had found so fascinating.

Later as Richard was unpacking and I was setting my computer up in the adjoining bedroom, Emma came in and said, “Going to go outside.  We can go outside and talk. Talk with Mommy.”  She then opened the door to the porch directly outside our bedroom and sat in one of the chairs.  “Mommy sit here,” she said, pointing to the other chair.

Obediently I did as she directed and we talked.  Emma talked about how high it was from where we were sitting to the ground downstairs where she could see the dogs playing.  She talked about how I was sitting with her in the chair next to her.  She walked the length of the porch and talked about how she couldn’t reach the dogs, nor could she reach the ground downstairs.  We discussed distance and the difference between being inside and outside and then she stood in front of me and said, “Now I’m going to sit on Mommy’s lap.”

Which she then did.  And I wrapped my arms around her, while we looked out at the Rocky Mountains, jagged and covered in snow and breathed in the crisp mountain air together.

The next morning, outside with the dogs, who were behind me looking at Emma.

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


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