Category Archives: Siblings

The Power Of Understanding

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now.  Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”.  Both agreed.  What has occurred as a result is nothing short of incredible.  Understandings have been forged, exchanges of ideas and beliefs have been made.  They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer…  Many people take these types of conversations for granted.  But we do not.

Listening and learning…

Nic & Em

Costumes, Halloween and Genetics

Posted on Facebook this morning…

Thankfully this “costume” would not interest either of my children, though Charlie Sheen does hold a certain appeal for my son, just not in the buff.  The costume(s) Emma picked out, ostensibly for Halloween, but will be worn, undoubtedly, on an almost daily basis for the next few years, are due to arrive any day now.  She chose a pink mermaid outfit, complete with magenta feather boa and yes, the tail is covered in sequins.  As a backup she opted for a “Renaissance Princess” costume with faux fur and a veil.  It’s all very King Arthur meets Lady Macbeth-ish.  She whipped right past the costumes for ghouls, ghosts, goblins, zombies and various farm animals.  She hovered over a “Rainbow Witch” costume, but ultimately passed it by, pointing instead to the hot pink butterfly, the “ice Princess” and a costume I couldn’t figure out what exactly it was supposed to be, but looked like a giant multi-colored lollipop with wings or maybe it was a G-rated version of Lady Gaga, it’s hard to say.  I’m grateful Madonna has yet to come onto Emma’s radar, though it could be argued Lady Gaga, one of Emma’s favorite singers, is not so different.  Both appear to favor the cones used as warnings on construction sites for breasts, still trying to work that one out…

Looking back to other generations, it does seem Emma’s love of costumes was shared by several of her ancestors.  Both my grandparents, her great grandparents held “costume” parties.  There are boxes filled with photographs of my grandparents, particularly my grandmother, wearing some pretty outlandish outfits.  My mother has two racks of “costumes” occupying a corner of her project room in her house.  I have in my possession a hilarious photo of my mother dressed as Tweety Bird, but haven’t asked her permission to post it or I would. Evidently a love of drama and dress up runs deep in my family, one might even say it’s genetic.

Emma doesn’t care about the candy, she has no interest in going up to people and saying “trick or treat”;  for Emma it’s all about the costume.  Unlike her brother who sees the costume as a necessary annoyance to getting sugary morsels, sort of like the jacket and tie required at certain restaurants.  I have to say, I’m with Emma on this one, other than an inexplicable craving for that truly dreadful candy corn, (what do they put in that stuff?)  the idea of wandering around strong arming people into giving me treats doesn’t hold much interest.  However it’s right up Nic’s alley.  Each Halloween we debate which weapon in his arsenal he will brandish.  Usually he chooses several and with the inevitable face paint he demands, resembles something out of a spread in National Geographic featuring child soldiers in some war-torn country.  (Yeah, I did just write that.  Moving right along)  Nic finds Emma’s lack of candy enthusiasm absolutely baffling.  And while Emma doesn’t voice her astonishment at her brother’s disinterest in all things costume, I have to wonder that she doesn’t think it… odd.

It began young…

Related articles

Nic’s Birthday

“It’s Nicky’s birthday!”  Emma said, bouncing up and down.

Nic beamed at her.  “Yeah.  Thanks Emmy.”

Then Emma launched into a rousing rendition of Happy Birthday, not once, not twice, but three times!  By the third time she was beginning to lose her audience, not that she cared.  Nic was intent on opening his presents.  “Where’s Dad?”  he asked more times than Emma sang Happy Birthday.

For the record, it was 6:24AM.

A trip down memory lane through pictures and text…

Two years ago I interviewed Nic about what it was like for him to have Emma as his sister.  Things have certainly changed since then.  For a view into a year or so later, click ‘here‘ and then more recently, ‘here.’

 Richard, Nic and me minutes after Nic was born 12 years ago.

That look on my face is joy (I know you wouldn’t have guessed) mixed with exhaustion.  My labor was over 38 hours long!

At our wedding, getting ready to nurse, yup nothing conventional about anything in our lives, even then. 

On our honeymoon in Taxco where we all got sick.

Big Brother, Nic.

Growing up

In a flash –  12 years later 

Nic and Em

Merlin looks on.  I imagine he’s thinking – Is there room for me?  No, maybe I’m safer here.  They certainly are curious creatures, these humans.

Happy Birthday Nic!

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

To read my guest post on Special, click ‘here


Sleepovers, Siblings and Autism

I have to begin by pointing out our redesigned, upgraded and improved site!  (If you could see me I look like Carol Merrill in front of door #1 on Let’s Make a Deal.  I’m waving my arm up and down, pausing at all the new, awesome features, while smiling invitingly.  Okay, totally dating myself on that one.)

A few months ago my cousin, Peter and his wife invited Emma’s older brother, Nic to come to their home for a “sleepover.”  On the designated and much anticipated afternoon, Nic and I took the subway uptown to their home.  I got Nic settled and discussed when we should come to retrieve him.   It was decided that we would all come the following morning for a breakfast of pancakes and then be on our way.  (My cousin is actually close to my mother’s age, yet I feel particularly close to him and his wife.)

When I returned home Emma had just returned from a full day of activities.  We had told Emma that Nic would be spending the night with “cousin Peter and Susan” several days before and she seemed to take it all in stride.  The next morning as planned we went to pick up Nic, ate a lovely breakfast that Susan had prepared for us, and left, thanking them profusely.

Yesterday, now at least a month later if not more, Emma announced, “Go sleep over at Susan and Peter’s house.”

Thinking she meant that she wanted Nic to go there again and that she had so enjoyed our night with Richard and me all to herself, I said, “Oh!  You want Nicky to go back to Peter and Susan’s house?”

“Yeah!”  she said, nodding her head vigorously.  Then she came closer to me and said, “Go with Nicky?”

“You want to go with Nicky to Peter and Susan’s house?”

“No.  Just Emma.”

Confused, I said, “You want to go to Peter and Susan’s by yourself?”

“Yes.”  She looked at me expectantly.  “Spend the night at Susan and Peter’s!  Nicky stay home.”

It was one of those moments when you feel overjoyed, but also filled with sadness.  How could I tell her this was unlikely to happen?  How could I explain that Peter and Susan might not invite her?  How could I explain that this was not something I could ask them to do?  As my mind whirled around trying to figure out how to respond, Emma began to cry.

“Go to Peter and Susan’s house.  Sleep at Susan and Peter’s house.  Tonight.”

The longer I remained silent the more she upped the ante.  I glanced over at Richard with a look of desperation.  A look that said – how are we going to deal with this?

Richard explained that tonight we were going to have dinner and then go up on the roof.  We brought out a calendar and ticked off the upcoming activities we had planned.  We tried to explain to her that we couldn’t invite ourselves over to people’s homes.  (This was way to complicated and too much information.)  And the whole time I kept thinking how do we explain?  How do we say this simply?  As she became more fixated on the idea, she began repeating it over and over again in between tears.  Everything we said, “Not tonight, Em.”  or “Maybe over the summer,”  did little to satisfy her.

Eventually I brushed her and did joint compressions.  She seemed calmed by this and we talked about pressure and how she prefers firm long strokes, not light strokes.  We both did some breathing exercises together and the fixation on going to her cousin’s house seemed to dissipate.  Later Richard put on music for her and we danced.

After I had put Emma to bed and read stories to her, I said to Richard, “You know there’s a really positive side to this.  She’s showing her desire for independence.  It’s pretty amazing.”  We discussed how this represented so many terrific leaps forward for Emma.  She is eager for more independence, is cognizant of Nic having sleepovers, and wants to have that experience too.

It’s all good.  (Where did that expression originate, by the way?!)  But it is.  It’s all good.

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

For my latest Huffington Post:  HuffPo

Emma’s Brother

Emma’s school has a sibling group that meets every other week.  The neuro-typical siblings meet for an hour, eat pizza, play games in the gym and generally just hang out for an hour or at least I think that’s what they do.  Nic, who turns twelve in another few months, has no interest in going, so we have never been.  For the past few weeks though, I’ve been encouraging him to give it a try.

“Why not?” I asked him the other day.

“Why would I want to go to her school and be with a bunch of kids I don’t know?” Nic looked at me and then asked,  “Will she be there?”

“No.  That’s kind of the point.  It’s time you can spend without her.”

“Why would I want to do that?  I’d rather go if she was going to be there.”

“Well, you might meet some other kids and find you liked them.  You might make some new friends.”

“But Mom, I have all the friends I need right now.  I don’t need any more friends.”

“What about the idea that you might meet some kids you like who also have a sibling with autism?”

Nic stared at me, seemingly dumbfounded.  “Why?”  he finally asked.

“Well, so you won’t feel so alone.  Because it might help to feel you could talk about it with another kid, because, maybe…”

“Mom,” Nic cut me off.  “I don’t feel alone and I can talk with you and Dad if I feel like it.”

“Don’t you ever want to talk to someone else though?”


When Nic was in Kindergarten, less than a year after we received Emma’s diagnosis, we took him to a child psychologist where he did “play therapy.”  This was in the days when he was drawing lots of bloody monsters who ate people.  He would spend hours on a drawing or painting, which he would then present to us proudly.  Red, one of his favorite colors, predominated as the depiction of blood was a prevalent theme.  Blood, carnage, gore, guts, people being decapitated and eviscerated, huge, frightening monsters almost always with severed limbs hanging from their mouths, were common subjects in his earlier work.  Then he went through a phase of depicting serial killers, chain saw murderers and any manner of brutal and horrifying creatures.  Richard would proudly shake his head and mutter something about how the apple didn’t fall far from the tree.  And it’s true, Richard and Nic share their love of horror and gore.  But when Nic’s second grade teacher called us to inquire if everything was all right at home because Nic’s graphic artistry was seen as being extreme, we had to have his psychologist speak with the school, assuring them that all was well.

A few years later when Nic’s homework load increased, he chose to stop going to the psychologist with the understanding that he could always go back.  However he has never wanted to.

Still, the sibling group seemed like a good idea, so I’ve been encouraging him to give it a try.

“It wouldn’t hurt to go just once.  You never know, you might find you like it,” I told him.

“Yeah, maybe,” Nic said, though it seemed like he was saying that so I’d stop pestering him more than because he thought it was a good idea.

“They’re having another one in two weeks.  Maybe you’ll feel like going to that one,” I suggested.

“Yeah, maybe.”

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

Nic & Emma

This morning I told Emma she had to take a shower and wash her hair.

“Just Emma.  Bye-bye Mommy,” Emma said as she ran into the bathroom, closing the door firmly behind her.

“No wait, Em.  I’m just going to supervise.  You need to rinse all the shampoo out of your hair, otherwise we have to wash it all over again.”

From behind the closed bathroom door I could hear her say, “No Mommy!  Emma do it!  Emma do it!”

This is great, I thought.  She’s at an age where she needs privacy, all developmentally appropriate.

Later Emma joined me in the kitchen where Nic had just appeared, hair wet and sticking straight up in the air, as he too had just washed his hair.

“Nice,” I said.


“Your hair.  You might want to run a brush through it, Nic.”

Nic rolled his eyes and sat at the dining room table listening to who knows what on his ipod.

“Here Em.  You have to brush your hair.”  I handed her the hair brush.   “And you’re next Nic.”

Nic either didn’t hear me or pretended not to hear me.  Either way there was no response.

“Hey Nic!” I said again in a louder voice.


“Nic.  Your hair is sticking up.  You need to brush it.”

Nicky!  You need to brush it!” Emma parroted.

Nic ignored both of us.

“Nicky!”  Emma said loudly.

“Emma!  Be quiet!”  Nic shouted with irritation.

“YOU HAVE TO BE QUIET!”  Emma echoed.

“EMMA!”  Nic shouted back.

“Nicky!  Stop talking!”  Emma yelled.

Nic caught me trying not to smile and said, “What?”


“Why are you smiling?”  he demanded.

“Nope.  No smiling.”

“Mom!  You’re totally smiling.  Why are you smiling?”  Nic punched me.

“Ow!  Nic!   You just punched your mother!”

“Nicky!”  Emma shot over on her scooter and thrust the hair brush at him.

“Mom she’s torturing me!”

“Torturing?  Seriously?”

Emma then began to try and brush Nic’s hair.

“Oh my god Mom!  She’s torturing me.  Make her stop!”  he said, as Emma attempted to brush Nic’s snarled hair.  “Ouch!  She’s hurting me!”  Nic said with feigned pain.  He held his head between his hands and pretended he was in agony.

“Okay Em.  Give Nic the brush.  He’ll brush his own hair,” I told her.

“Emma do it,” she insisted.

“No Emma.  Seriously.  I’ll do it,” Nic said, grabbing the brush from her.

Emma began laughing.  “I want to brush Nicky’s hair.”

“No Em.  You brush your own hair,” I said.

“Already did brush hair,”  Emma said indignantly.  “Now it’s Nicky’s turn,” she said before racing off on her scooter.

The diet update –  I spoke with Emma’s physician about the diet yesterday.  Since Emma did not test intolerant for gluten and because we’ve seen no significant change in over six weeks, we are putting gluten back into her diet.  This morning Emma ate Cheerios with rice milk.

“Well that should decrease the anxiety,” Richard commented when he saw the box of cheerios on the counter.

“Do you think she felt a lot of anxiety?”

“I meant yours,” he said.


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

Siblings – Autism

Nic is Emma’s older, neuro-typical brother.   Nic is eleven, about to enter the sixth grade and an all around amazing kid.  Having Emma as his younger sister is often difficult for Nic, though he usually doesn’t complain.  The siblings of children with autism are often burdened with responsibilities far beyond their years.  Despite our attempts to encourage Nic not to take on the role of her personal body guard, supervisor and parent, he often does on his own accord.  He can’t help himself.  He worries about Emma.

Nic has witnessed horrific and violent melt downs.  He has seen Emma punch herself in the face, bite herself repeatedly on the hand or arm.  He has stood by helplessly as she screamed and shrieked her frustration at not being understood.  He has joined in countless searches for such bizarre and arbitrary items as a missing balloon string, a piece of packing tape, a scrap of paper, a specific photograph or a microscopic shred of what is left of her blanket.  He has panicked with us when one of us uttered the dreaded words:  “Where is Emma?”

Nic is older than Emma by 21 months, yet he is very much the adult to her childlike innocence.   In an effort to give Nic time to enjoy himself without the stresses that can come with Emma, Richard and I spend at least one day a week with Nic, alone.

So yesterday, instead of going into my studio I asked Nic if he wanted to hang out with me.

“I’d love that Mom,” he said, nodding his head.  “We’ll have some Mom and son time.”

We ended up going to Elephant and Castle (a place that’s been around for almost forty years and where I used to love going when I was in college because of their bowls of latte) for lunch.  We discussed the coming school year, who he hoped would be in his class and what teachers he hoped to have.

“What are the top five things you like best about yourself?” I asked.

“I like that I’m a good person, I’m kind, thoughtful, I care about people, I want to help people and I work really hard.”

“You do!  That’s all so true,” I said.

“I like that I’m an average skateboarder,” he added.

“You’re a really good skateboarder.  What do you mean by that?”

“I like that I’m okay, but not great yet, it gives me something to work toward.  Cause like if I was really great and already knew everything, that wouldn’t be as much fun,” he took a bite of his cheeseburger.  “Mom, you’ve got to try this.  It’s amazing!”  He offered me a bite of his burger.

“Okay, if you could change anything about yourself, what would it be?” I asked.

“I’d be a genius,” he answered without hesitation.  “What about you?”

“I’d be more patient and not so quick to anger,” I said.

“I think you’re perfect just the way you are, Mom.  I don’t think you have to change a thing,” he said, patting my arm.

“Wow, Nic.  That’s such an incredibly kind and lovely thing to say.”

“It’s okay Mom.  It’s true,” he said looking at me and smiling.

That’s Nic – kind, supportive, incredibly loving and thoughtful.

After we had lunch we went to the movies, then took a walk and talked some more.

“This was a great day, Mom.  Thanks for suggesting it,” Nic said as we made our way home.

“I loved it, Nic.  I loved spending today with you.”

“Yeah, me too.”

We walked together in silence for awhile, then Nic said,  “Mom?”

“Yeah Nic?”

“Do you think we could get a dog?”

For more on our family’s journey through Emma’s childhood of autism, go to:

Emma’s Rainbow

One of the wonderful by-products of this mess at work is that I am spending every day with my family.  Yesterday we ended the day with Emma saying to me during dinner, “Go outside with just Mommy?”

“Yeah okay, Em.  We can go outside together as soon as everyone’s finished eating their dinner,” I told her.

Once outside, Nic was already there throwing the frisbee for the dogs.  Emma said, “Hold hands with Nicky?”

“Sure Em,” Nic said.

“Run through the sprinklers with Nicky?”  Emma said, jumping up and down.

“I’ll run through the sprinklers with you, Em.  Here,” he said, holding out his hand.

And then they began to run together.

Through the sprinklers…

And then Emma changed into her bathing suit and they ran again, this time through a rainbow…

And out the other side.

Laughing and together, just the way any brother and sister might.

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

Empathy and Autism

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

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

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

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

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

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

Emma in Union Square Park – Summer, 2011

Emma’s older brother, Nic

Yesterday I took Nic and Emma to a relatively new carousel on the refurbished park along the Hudson River.  It’s unlike other carousels in that it has a wide variety of animals, fish and insects instead of the traditional horses one usually sees.  Emma likes to ride on the Atlantic Sturgeon, with the Unicorn and Wild Turkey coming in second and third.

Emma riding on the unicorn

I’d ride on the hyena or the coyote,” Nic told me when Emma chose the Atlantic Sturgeon for a second time.  “What would you ride on?”

“I’d have to go with the Harbor Seal,” I answered.

“Yeah, that would be a smooth ride,”  he said.  We watched Emma go around and around.  Every now and again she’d use the waist strap to tap the sturgeon, as though she were urging it on.  “Mom?”

“Yeah Nic?”

“So how do you blow bubbles with your gum anyway?”

“Okay, here I’ll show you,” I said, taking a piece of gum from his remaining pack.

“Emma blows huge bubbles.  I just don’t get it,” he said as I chewed the gum, trying to get it to the right consistency.

“Well she chews a lot of gum…”

Nic interupted me, “Yeah, I know, because of her ears.”

“Exactly, so she’s had a lot of practice.   But here, watch.”  I tried several times to demonstrate how to blow a bubble, which is quite a bit more difficult to explain than one might think.

After several attempts Nic said, “I think it’s a girl thing.”

We watched Emma for awhile on the carousel.

“Hey Mom?”

Yeah, Nic?”

“It’s weird.”

“What is, Nic?”

“I mean Emma’s so good at some things, but so bad at others.  Like she can blow bubbles and taught herself to swing and she’s really good on the scooter, but she still can’t read or write very well.  I think it’s interesting,” he said.

“Well, you’re right Nic.  There are things that are much easier for her and then lots of other things that are really hard.”

“But I don’t get it.”  He looked at me expectantly.

“Yeah.  I know.  It’s difficult to understand.  It’s the wiring in her brain.  It makes a great many things really, really difficult for her.”

Nic kept trying to blow bubbles with his gum.

“Does that make sense?” I asked.

“No,” he said, shaking his head.  “Not really.”

“Yeah, I know.  It’s really hard for us to understand.  There’s so much more we don’t know about autism than there is we do.”


“Yeah Nic?”

“Do you think I’ll ever be able to blow a bubble?”

“Yes.  You just have to keep practicing.”

“But you don’t let me chew gum that much.”

“Yeah, that makes it harder.”

Nic stared at me with a little half smile on his face.

“Hey, you get to do all kinds of other things that Emma doesn’t get to do, and the only reason we let her chew gum is because of her ears.”

Nic kept grinning at me.


“Nothing, Mom.  Nothing.”

For more on Emma’s journey through a childhood of autism and her older brother, Nic’s experiences along the way, go to:

Hide and Seek

Like many children, Emma loves nothing more than a rousing game of Hide and Seek.  Except Emma doesn’t like to look for anyone, she just wants to be the one to hide, always.  She also only likes to hide in one place.

Which kind of defeats the whole purpose of the game.  Because not only is she utterly predictable, she’s also really hard to miss.  Never-the-less, we do our best to play the part of surprised “seeker”.
“Hmm, I wonder where Emma is?  Let’s see…  could she be in here?”  Dramatic throwing open of various closet doors and curtains, followed by, “No.  Not in here.  I wonder where she could be hiding?!”  There’s a great deal of crouching down, looking under chairs, the bed, her desk, while muttering, “Gosh, I can’t imagine where she could be!”

All of this is done while Emma variously – sings, hums, makes loud breathing noises or whispers to herself , “No, not going to find Emma under the mattress!”

That she is also squirming around makes her hard to miss, still we do our best to play the part given us.  Eventually if we are taking a very long time to “find” her, she’ll give us a little help.

By yanking off the fitted sheet to reveal herself and yelling, “There she is!”

In the theatre world, this would be called stealing lines, hogging the stage or any number of disparaging phrases.  But to Emma she’s simply trying to help us out and we appreciate it.

“Oh!  There you are,” we shout before grabbing a limb and tickling her mercilessly.

“Let go!  Let go, let go, let go!”  Emma squeals.

“No, no, no.  I’m not going to let go.  I’m going to tickle you and tickle you and tickle you..”

The other day while in the midst of just such a moment, Nic appeared in the doorway to Emma’s bedroom, “What are you guys doing?”

“We’re playing hide and seek, want to play?” I asked.

“Yeah okay,” Nic agreed, somewhat reluctantly as he knew Emma would only want to hide underneath her mattress again.

“Should I count or do you guys want to find me?” I asked.

“You and Nicky hide?” Emma said.  Meaning she wanted to hide with Nic.

But I pretended not to understand as every interaction can be an opportunity to teach (we’re trying to help Emma with her pronoun reversal problems), “Oh okay.  So you’re going to find me and Nic?”

“NO!  Mommy find.  Emma and Nic hide!”

“Emma you have to say, Nic and I are going to hide.”  Nic took her finger and made her point to herself, “Me, Emma.  You say me,” then he looked up at me with an expression of mild exasperation.  “No wait, that’s not right.”

I nodded my head.  “It’s okay, Nic.  You’re doing great.”

“Okay, okay,” Nic said, starting over again.  “Em, you have to say I.  I’m going to hide with Nic or Nic and I are going to hide.”

At this point Emma had lost all interest and was trying to get one of her favorite youtube videos up on her computer.

“Come on Em.  One last game,” I encouraged.

“Five minutes then computer,” Emma said.

“Yes. One, two, three, four, five…”

For more on Emma’s journey through a childhood of autism and an interview with her older brother Nic, go to:

Nic’s Birthday

Emma has very specific ideas about birthdays.  The best birthday, in Emma’s opinion, is one that takes place at one of the many kid’s gyms here in New York City and is followed by a birthday cake or cupcakes with candles and Happy Birthday sung loudly.

However, today is Nic’s birthday and it’s hard for Emma to understand that he did not choose to celebrate it at one of the gyms Emma so adores.

“Hey Em, it’s Nic’s birthday today,” I said early this morning.

“Birthday at Elite gymnastics!”  Emma replied.

“No, Nic isn’t going to celebrate his birthday there,” I told her.

“Birthday at other gymnastics!”  Emma said bouncing up and down.

“No.  Nic didn’t want to celebrate his birthday at a gym,” I said.

“Different gymnastics,” Emma said, trying to process this information.

“Well no.  Not any gymnastics.”

Emma was silent.

“Is there anything you want to know or say about Nic’s birthday today?” I asked.

“Yes,” Emma said.

“Okay.  What?”

“Happy Birthday Nicky!”

“Ah, that’s so nice of you, Em.  Let’s go tell him,” I held out my hand.  Emma took it and went over to Nic who was charging his new video game controller.

Emma leaned into his face and said, “Happy Birthday Nicky-Nic!”

“Hey, thanks Emma.  That’s really nice of you,” he said, putting his arm around her.

Then she gave him a kiss on the cheek.

Happy Birthday Nic!

Emma looks on as Nic reads a birthday card and opens presents.

Merlin amidst wrapping paper

Nic shows off his birthday haul.

Happy Birthday Nic!

For more on Emma and her journey through a childhood of autism go to:  EmmasHopeBook

Monster Bugs

Last night I pulled out the dozen or more non-fiction children’s books I have for Emma.
“Pick two,” I instructed, fanning them out for Emma to see.

Emma pointed to Monster Bugs & Escape North – The Story of Harriet Tubman, bypassing Volcanos, Whales, Big Cats, Thomas Jefferson and George Washington’s Dog. “This one?” Emma said.

“Okay.  Monster Bugs and Harriet Tubman, it is!”

“Say it with your mouth closed,” Emma said, putting her hand over my mouth.  “Monster Bugs!” she demonstrated with her lips together so that it sounded more like “mummerbum.”

I began reading in an animated voice, lips sealed as Emma shrieked with laughter.  “Hab you eber looked ab a bug up clobe?” I read.  Every time I opened my mouth to annunciate the words she would cover my mouth with her hand.  “Emmy stop!” I said, twisting away from her hand.

“Mouth closed!” Emma laughed.

“Okay, one more sentence with my mouth closed and then we’re going to read it the other way,” I told her.

Nic, who came to see what all the laughter was about, sat next to me on Emma’s bed.  “Don’t worry Mom.  I’ll make sure she doesn’t cover your mouth again,” he reassured me.

“You might see horns…” I began, as Emma clapped her hand firmly over my mouth.

“Emma!  Let Mommy read the story,” Nic said, laughing.

“But the beetle fires boiling-hot gas from its rear end,” I read.

“I love this book,” Nic said, peering over my shoulder at the picture of the beetle shooting gas into an unsuspecting mouses mouth and nose.  “That is so awesome!”

“Mummerbum!”  Emma laughed.

As we continued to make our way through the book, with Nic asking for clarification on specific bugs, particularly the more gruesome and scary ones and Emma repeating the words with her mouth closed, I thought of how when I was pregnant with Emma I looked forward to reading stories to both the children.  When Emma was little she didn’t have any patience for books and only was interested in them if we allowed her to hold them so she could flip through their pages.  The book and its pages interested her, the act of flipping the pages methodically without really looking at the pictures seemed far more interesting to her than the story within the book.  But in the last few years her interest in books has increased and now she seems to genuinely want us to read to her, even requesting specific books while rejecting others.  It was wonderful to see her looking at the illustrations, pointing to the hairy tarantula while saying, “Maranmula!” with her mouth closed.

Nic was impressed with the Stink bug and the Praying Mantis who cleans its face like a cat after consuming a baby bird.

When I finished reading Monster Bugs, we moved onto Escape North!  A quarter of the way through, Nic nudged me and pointed to Emma.

I looked over to see she had fallen asleep.

“We’ll finish this one tomorrow night,” I whispered to Nic.

“No!  Read me the rest,” he said.

“Okay.  I’ll read it again to Emma tomorrow.”

“Good idea, Mom,” Nic said snuggling down next to me.

Trick or Treat?

Halloween, wildly anticipated by our son Nic, was an occasion for dress up followed by cake for Emma.  “Have Halloween party and cupcake?” Emma asked yesterday afternoon.

“We aren’t having a party, but we will go out trick or treating and we can get you a cupcake while we’re out,” I said, knowing Emma wouldn’t care about the candy she acquired while trick or treating.

“Get cupcake?  Have cupcake now?” Emma said.

“In a little while, Emma.”

“Go trick or treating,” Emma said with a bit less enthusiasm.

For Emma it was all about the cupcake.  The cupcake, which would give her the opportunity to sing – Happy Birthday, regardless of the fact no one was celebrating a birthday.  Cupcakes = Birthdays = singing = joy, pure and simple.

Emma insisted on wearing her one-and-a-half-inch heeled, pointy-toed witch’s shoes, her black witch’s hat and completed the entire outfit by carrying a black broom.  “Mommy carry candy bag?”  Emma asked when we got outside.

“No Em.  This is for you.  You have to hold the bag and when we get to the first house you open the bag and say – Trick or Treat!” I coached.  We went through the same routine last year and the year before that.

“Trick or treat!” Emma repeated happily while Nic rolled his eyes.

“Mom, she doesn’t even care about the candy,” Nic said in a tone of resigned disbelief.

“I know Nic,” I said.

As we made our way out to join the quickly gathering crowds in Chelsea, Emma ran ahead.  Her head down, witch’s hat with its purple band jutting upward, her little heels clicking as she went.  “Em!  Em!  Wait!” One of us would periodically yell.

It was cold last night.  But Emma seemed impervious to the chill.  She accompanied us for the 20 blocks we roamed, up and down, back and forth, without complaint.  We stopped along the way to buy her a cupcake, where one of the customers standing in line upon seeing us, was heard to say, “This is what I love about New York City – the people have such commitment!”

We attempted to teach Emma to say Trick or Treat and either take a piece of candy from the bowl being offered or open her bag so that the offerings could be dropped inside.  She never really got either action down and by the end of the night I stopped trying to coach her.  She was content to walk along with us, watching Nic dart in and out, filling his bag.

Nicky!  Nicky L!” Emma occasionally shouted when she lost sight of him.  By the time we returned home, Emma struggled out of her witch’s costume, replacing it with one of her many princess dresses, where upon she dug into her cupcake with relish.

“Yum, yum!”  Emma said, smiling broadly, her face covered in icing.

Halloween 2010 – Emma, Richard & Nic

Autism and the Family

“Mom! “ Nic’s cries could be heard throughout our home.

“What is it, Nicky?” I asked.  It was 1:00AM.  I could hear Emma whimpering.

Nic began to cry.  He stood in the middle of the living room, pointing toward his bedroom.  “She’s in there, she woke me again,” he said before bursting into tears.

“Oh, Nicky.  Come on.  I’ll get her out of your room,” I took his hand and led him back to his bed where Emma lay.

“Emma!  This is not okay.  You may not wake up Nic!”

“Nic’s room, bye-bye!”  Emma said cheerfully.  Then she began to whimper.

“That’s right.  You may not wake up Nic.  Go to your room,” I said.

“No.  Not going to wake up Nic,” Emma said.

The night before Emma woke everyone by screaming in the middle of the night.  It was similar to being woken by an air raid siren, jarring, disconcerting.  The shrieks were deafening.  We punished Emma by not allowing her to have her beloved pancakes the following morning.  Even so, she seemed not to fully understand the connection.

Emma’s nocturnal awakenings affect all of us, but so do her public melt downs, her inability to communicate, her inability to understand and empathize with others, her limited food choices, her inflexibility.

Perhaps of all of us, it is hardest on Nic.  He is the one who gets the brunt of our impatience.  It is Nic who feels the weight of being expected to be the “normal” one, who understands and feels our stress, who feels fury with Emma for her very public displays, which he finds increasingly intolerable and embarrassing.  He longs for a “regular” sister, one he can play “hide and seek” with, one who will play card games with him.  One he can talk to.  As exhausted as Richard and I are by our sleep- deprived nights, we do our best to plod along.  We talk with one another, lean on each other.  We rely on gallows humor when everything seems bleak.  And while we encourage Nic to talk honestly about his emotions, I wonder whether he really feels he can.  I wonder whether he doesn’t feel he is placing yet another burden on us, and censors his thoughts and feelings.

For several years after Emma’s diagnosis Nic went to see a child psychologist.  A year ago he requested that he not go any longer.  We spoke with him at length and promised him we would not force him to continue seeing her if he didn’t want to go back.  Since then, I have asked him several times whether he’s sure he wouldn’t like to return or find a new therapist, he has continued to say no.

I have learned over the years, that as bad as things are or seem:  a) they can always get worse, b) they can seem worse than they are and c) one can always shift ones perspective ever so slightly enabling one to see things differently.  I have found when I am able to achieve a more balanced perspective I am better able to cope.

Emma has changed all of our lives dramatically.  She has pushed each of us.  Sometimes it feels to our breaking point, but we have all survived thus far.  Emma forces me (I will not presume to speak for any of the other members of my family) to pay more attention.  I appreciate small gestures, small acts of kindness more than I did before Emma’s diagnosis and it inspires me to do the same for others.   For instance, I am constantly aware of how hard my husband, Richard works to help her, to help Nic, to help me.  He is a rare breed, fiercely ambitious, a visionary and yet places his family firmly first, not just in thought, but in his actions.  He believes in equality and behaves in accordance to those beliefs.  He is as strong a man as I have ever met, giving both emotionally and physically of himself.

Emma has taught me to see the world differently.

And it is beautiful.