Tag Archives: autism & siblings

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?”

“No.”

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.

“What?”

“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.

“Huh?”

“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?”

“Nothing.”

“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.

“Oh.”

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

Waking Nic – Autism

Last night Emma woke Nic up – again.

“No Mom, it was really bad.  She woke me up like five times. I swear Mom, FIVE times,” he held up one hand and wiggled all five fingers at me.

“What did you say to her?” I asked, stroking his somewhat greasy hair, while wondering if I should insist he wash it before school, then deciding he would be late for his bus and anyway it wasn’t all that bad.

“I told her she had to leave.”  He leaned against me, and said, “I told her – Emma!  You have to go back to your own room.”

“What did she do?” I asked.

“She went back to her room.  But then she came back. Like at three, then five, then six.”  He looked at me and pretended to fall asleep, collapsing in a heap on my lap.

“Hey Emma!” I called.  “You cannot wake up Nic.  It’s not okay to wake up Nic.”  But if I’m telling the truth, I was just a tiny bit relieved that she woke up Nic and not me.  I rationalized this “bad mother” thought with – He’s young and can handle sleep deprivation much better than I can.   Meanwhile Nic continued to mime sudden unconsciousness by falling on the ground, back on his bed, then into my arms, like some sort of narcoleptic preteen.

“You cannot wake up Nicky!”  Emma parroted, using her stern voice.

“Yeah, Em.  That’s just not cool,” Nic said.

I told Emma that since she woke up her brother, she couldn’t bring her  beloved “string” (a piece of packing tape) out of her bedroom.  She was very upset by this and said, “You cannot wake Nicky.  But listen, if you wake Nicky no string.”  Then she began to cry.

By the time it was time to go down to wait for her school bus, Emma was calm and said, “It’s okay.  Next time you cannot wake Nicky.  Then string can come out of the bedroom.”

I gave her a hug.  “That’s right Em.  It’ll be okay.”

Emma waiting for her bus this morning wearing a “pretty dress”.

Saturday with Em

This past weekend Richard did a bit of research and came up with a packed afternoon of things to do with the children.  Richard is the one who reads Time Out NY for Kids.  He pores over the finer details of exhibits, performances, always considering whether it will be appropriate for our neuro-typical son, Nic, but also for Emma, who has autism.  He takes into account her special needs as he peruses the various activities.  Richard is the one who reserves tickets, maps out routes, plans the schedule as only a seasoned New Yorker and caring dad can and would do.  When we went to California for my brother, Andy’s wedding, Richard put together a jam packed children’s dream vacation for two days.  Emma still talks about it.

So off we went Saturday afternoon to the West Village where we saw Cobu – a group of performers who mix Taiko Drums with American Tap dancing.   During forty-five minutes of dance, drumming and swirling costumes, Emma only once put her index finger to her lips during a rare silent moment and made a loud “SHHHHHH!” sound.  We glared at her and she then whispered, “No talking.”

After the performance we headed over to the High Line and walked toward the Chelsea Gallery district.

Whenever we passed a place that could be even remotely appropriate for sitting, Emma did just that – even when it was in unlikely places.

Our first stop was the Mary Boone gallery because of it’s unusual displays, which we thought the children might enjoy.  Emma, however, raced through pointing on her way out to one of the mannequins and shouted, “Costume,” before exiting the gallery as though she had an urgent appointment she was already late for.

Two doors down was the Gagoshian Gallery with a not-to-be-missed Richard Serra installation.

At one point Emma said, “Richard’s show.”

“Richard Serra, Em, not daddy,” I said.  To which she turned and looked at me as though I were an idiot for having felt the need to make the distinction.

“Don’t touch, Em,” I reminded her, just as she turned the corner.

On the way home Emma put her arm around her brother, Nic and the two of them made silly faces at each other.

“Hey Mom!  That’s the most she’s ever interacted with me!” Nic observed as we headed into our building.

Yup.  Everything changes.

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

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:  www.EmmasHopeBook.com

We Have to Keep Trying – Autism

When Emma was first diagnosed, she was four months away from her third birthday.  Since that fall, now seven years ago, we continue to show up for her in ways we could not have imagined.  As many of you with a child with autism know, engaging your child can be complicated.  Emma cannot have a “conversation” the way her neuro-typical brother, Nic can.  We cannot have discussions with her, there is no easy back and forth of ideas and opinions.  Because Emma is rigid in her desires, outings can become problematic if they are not kept to a strict schedule.  The central park carousel must be ridden and then we must go to the zoo, but only after we have watched the brass animals go around when the clock strikes every half hour.  Once in the zoo we must watch the seals being fed and then go see the penguins, followed by the aging and now blind seal, then the polar bear and finally a visit to the bats, before we can leave.  Often Emma will then insist on a visit to the petting zoo where she is more interested in patting the metal replicas of the animals, which then make the appropriate animal sounds, than the real animals.

When both the children were toddlers we were frequent visitors to the American Museum of Natural History on the upper west side of Manhattan.  During the winter months I often took the children four or five times a week.

“Once the kids are older, I hope never to go to that museum again,” I grumbled to Richard one afternoon after an exhaustive five hours spent there.  “And can we add every playground that exists?”  I added.

And then we got the diagnosis and everything was up for grabs.

My time with Emma now includes listening to music and dancing together, walks and yes, lots of playgrounds, amusement parks, the zoo, the various carousels the city has to offer, swimming, but also reading and her literacy program.  Richard still takes Emma to see “the snake bite boy”, which is Emma’s name for the American Museum of Natural History.  But it is during Emma’s “study room” sessions that I see her progress in real, identifiable and concrete ways.  It doesn’t matter whether I am feeling optimistic or not, the evidence is there, right in front of me.  We have kept a record of those first hours when she was learning to form the letter “a” to now, when she is struggling to write two and three sentences at a time.

This morning was a difficult session.  She was required to write three sentences from memory.  At a certain point I said, “We cannot give up, Em.  We have to keep trying.  I know it’s hard, but you can do this.”

Those words were probably more meaningful to me, than to her.  They would be an apt mantra for me to repeat to myself every morning.

No matter what, we cannot ever give up.  We have to keep trying.

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

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:  www.EmmasHopeBook.com

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.”

“Mom?”

“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.

“What?”

“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: www.EmmasHopeBook.com

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: www.EmmasHopeBook.com

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.

Emma’s Birthday

Emma and Martin Luther King share a birthday.  It remains to be seen if they will share anything else.  Perhaps one day Emma will be a persuasive speaker perhaps she too will express her abhorrence of violence and injustice.  It’s impossible to know, as Emma is autistic.

Yesterday Emma turned nine.  She has a lifetime ahead of her to tell us what she cares about and how she feels about things.

On Sunday we had a party for her and despite my concern that few children were able to make it, it turned out to be lovely and Emma had a blast.  A number of our friends made the effort to come to the gym we rented for an hour and a half and afterward a group of us returned to our place for gumbo and birthday cake.  Emma was ecstatic – not so much with the gumbo, which she didn’t eat, but the gymnastics party, her guests, the birthday cake, complete with candles and song and all the attention.

Later, Emma disappeared into her bedroom.

“Mom!  Mom!  Look!” Nic yelled.

“You have to see this,” Richard said from the doorway into Emma’s bedroom.

There Emma was, sitting up in her bed, wearing a pair of brand new birthday pajamas, her head resting on a new matching pillow and a padded eye cover around her neck.

Emma wearing her new PJ’s

Several of us crowded into her room, like subjects attempting to catch the attention of a queen.  We “oohed” and “aahed” as she opened each gift presented to her one by one by her brother, Nic.

Emma feeding her new “Geneva” groovy girl

Emma Monday morning with her new baby doll

Now for most parents all of this must seem rather mundane and hardly worth documentation, particularly documenting to the degree we have.  But for Emma, this was a first.  It marked the first birthday she took any genuine delight in opening her gifts and once the gift was opened, took actual pleasure in playing with each present.  Emma sat happily in her bed, her admirers clamored around in adoration, Nic raced back and forth carrying each gift to her as if it were the Holy Grail itself.

And perhaps to Emma, it was.

A Wish

The parent of a severely disabled child asked me a few weeks ago what I wanted for Emma.  She was referring to the long term, the far off future.

“I’m assuming you’re not expecting her to go to Harvard,” she said.

Well no, I thought.  That has never been a goal for either of my children, but I didn’t say that to her.  Instead I said, “I want her to be able to live independently.  I would like her to have friendships, to be able to find something she loves doing and takes pride in.  I would like her to be a kind, thoughtful person who is able to contribute in some way to society and our world,” I stopped for a minute.  “I guess I want her to feel good about who she is in the world.”

She nodded her head.

When Richard and I decided we wanted to try to have children we spent many hours discussing our views on parenting and childrearing.  We were in agreement with almost everything.  Neither one of us cared what college our child went to or even if they went to college.  We both agreed we were more concerned with our children finding a career they loved.   We agreed we wanted them to be kind, to be generous, to consider others and to behave in ways which foster that.  We agreed we did not care what their sexual orientation turned out to be and we did not own them.  We both felt strongly our children, if we were lucky enough to have any, were not an extension of ourselves, but independent beings.  We agreed it was our duty to guide and advocate for them until they were old enough to advocate for themselves.

When I was pregnant with Nic I asked my mother if she had any advice for me.  She said, “Love them with all your heart, tell them how much you love them as often as you can and one day they’ll forgive you.”

It was the single best piece of advice anyone has ever given me.  We as parents will make mistakes, we will use a harsher tone than we meant to or are even aware of, we will say things in anger we didn’t mean, we will model behavior that is not always exemplary, we will do things we wish we hadn’t.  But we can say – I’m sorry.  I made a mistake.  And we can convey our love for our children as often as we are able to.

When Richard and I first received Emma’s diagnosis we were given a barrage of information.  We were told to get Emma between 35-40 hours a week of ABA therapy.  We trained with the ABA coordinator so we could continue using ABA with Emma after the therapists left.  I remember thinking after the hundredth flashcard maybe I should just hold her.  Emma wouldn’t let anyone else hold her, but if I sat in the rocking chair she would crawl into my lap.  I would put my arms around her with her head resting on my chest and we would sit like that together for up to an hour sometimes more.  During that early period it was the one thing I felt I could do with Emma, which no one else was able to do.  It seemed more important than forcing her to do yet another puzzle or one more sequencing game.  I reasoned, for a child who appeared emotionally cut off from other human beings, holding her was a kind of therapy too and perhaps as essential if not more essential than any of her other therapies.

Those hours spent with Emma in my lap were bliss.   Whether the physical affection made a difference or not I cannot know for sure.  My guess is it did and continues to make a difference.  To this day I remember as a little girl sitting between my mother’s legs by our swimming pool and leaning my small body against hers, her arms wrapped around me.  There is something about physical touch, which promotes a state of well being unlike anything else.

It is that state of well being I wish for both my children.

Joe

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

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

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

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

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

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

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

“A wedding-birthday party,” Emma said.

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

“Okay,” Emma said.

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

“And Joe and Angelica!” Emma interrupted me.

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

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

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

“Go to Chelsea gym bowling,” Emma said.

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

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

“Exactly,” I said.

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

“Yes,” I said.

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

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

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

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

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

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

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

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

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

Nic Teaching Emma to Play the Piano

A few weeks ago Nic was playing “Hey Jude” on the piano.  “Hey Jude” happens to be one of Emma’s favorite songs, so Emma sang along as Nic played.  A little later, maybe the fifth or sixth time Nic ran through the first verse, Emma wandered over and stood beside him at the keyboard.  Every now and then she would play a note and look at him.  Within a few minutes she was seated at the piano and Nic was teaching her the notes.  (That’s Nic’s hand on the right side of the photo showing Emma which note to play.)

In the beginning Nic helped her by prompting her to find the correct notes, but after a few times, she was “prompting” herself.

This is an instance when her ‘perseverative’ behavior pays off.  After much practicing the notes Nic showed her, Emma was able to play the first verse of “Hey Jude”!