Tag Archives: autism and the family

Autism and Parenting

Posted on June 24, 2011 by | Leave a comment

I have been away from my family for eleven days now.  I am in Aspen, Colorado where I needed to reopen my store for the season.  There have been a great many things I needed to attend to, so here I am.

And there they are.

In New York city, my family – Richard, our son, Nic and Emma, the star of this blog.  To say I miss them would be an understatement.  I hear from Emma’s teachers.   They email with updates and about how Emma had a rough day the other day because the rest of her class was allowed to go to the roof to swim, but Emma had to have her final session with her music teacher, and so stayed behind.  Emma loves nothing more than water and swimming.  So she was beside herself, upset, crying and my guess is she hurt herself, though I haven’t confirmed this suspicion.

Later, an old classmate came to the school to visit and Emma was so excited to see her.  She kept saying, “Maddie’s back, Maddie go home on the bus on Wednesday, Maddie in Becky’s class”.

When they tried to explain that Maddie was only visiting and would not return, Emma kept insisting Maddie was back.

These kinds of things are hard for me to hear, the distance between me and Em making it all the more so.   I can’t hold her, I can’t be there to lessen the load for my husband, I can’t really do much other than call and listen.

People say – you’re changing diapers one day and then you’re helping load up their u-haul with their things.  It all goes by so quickly.   But whether one has children or not, it still goes by quickly.  Children are just larger than life markers of it.

Stop and look around, I tell myself, you’re in one of the most beautiful places in the world.

And then I remind myself to breathe.

For more on Emma’s impact on our lives and how we cope, go to www.EmmasHopeBook.com

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Autism

Posted on June 23, 2011 by | 1 comment

I have avoided writing about something I think about a great deal when it comes to Emma and her autism.  It is something some people bring up when they hear of Emma.  Thankfully most people do not.

It is – God.

There, I’ve said it.

When Emma was first diagnosed more than a few people said things like, “Everything happens for a reason.”  The first time I heard that comment I felt as though someone had punched me in the solar plexus.  The air was knocked out of me.  I stood there as they went on about whatever they believed, the reasons they felt this had happened, but I couldn’t hear them.  I watched their mouths open and shut, forming words, but they may as well have been speaking in another language.

The second time someone evoked God, as in, “We only get what we can handle,”  followed by, “God must think you very strong.”   I had the where-with-all to reply, “You might want to check the current suicide rates, as clearly the God you believe in, is giving those people far more than they can handle.”  And then I walked away.  Touche.

These comments, the ones that upset me the most always refer to God.  People with strong, solid faith seem to have a strength or determination that I do not possess.  It is more than a decision that’s been made, it seems they believe they have some sort of power, a knowledge the rest of us can only hope for.  They come across as knowing, as though they had a special private line to God, a kind of state of the art communication device that the rest of us do not own.  Perhaps what they do not understand is how superior they seem or perhaps they do, I don’t know.  I know most are trying to be kind.  That they are not, does not seem to occur to them.

When people have said to me, “I could never handle having an autistic child,” and then they go on to their next thought – “It makes me think we are given what we can handle.”  I understand what they are trying to say, they are expressing their relief that their children are neuro-typical.  “There but for the grace of God go I.”  I know someone who I like very much who made just such a comment, I was surprised when she said it, but I knew she hadn’t meant it to be cruel.  I know many people don’t know what to say when confronted with something that frightens them.  Disease, terminal illness, death, what can any one of us say?  Most of us do want to express our sorrow, we want to be there for the person who is going through the difficult time.  We want to bond with them, show them we are there for them.  Often our attempts are nothing short of just lame.  We end up saying something stupid, we walk away thinking to ourselves – Boy that was dumb.  Why did I say that?  But when people bring God into the mix, as though they need to bolster their thoughts, then it becomes more complicated and hurtful.

I get it.

I do.  I know none of the people who have said these things have meant harm.  They mean quite the opposite.  Still I wish they would think through their comments before they utter them.

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

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Dinner With The President – Autism

Posted on June 22, 2011 by | 1 comment

I received a form letter from Vice President Joe Biden yesterday.  It was one of those mass emails one gets, but rarely reads.  For some reason I glanced at it and read that the president will be having dinner with one person who makes a small donation of five dollars.  Their name will be thrown into a hat and one name will be drawn.

I thought about what I would say to the President were I to have the opportunity to have dinner with him.  And of course I knew what the answer was without hesitation.  I would speak with him about the rising numbers of children diagnosed with autism.  I would direct him to the countless news stories regarding the rampant abuse of those same children and adults living in group homes and institutions.  I would ask him to help set up communities where individuals with autism would have more control over how they lived, allowing them to pursue their interests, encouraging them to follow their dreams.  I would tell him about our trips to Central America with our daughter, Emma for stem cell treatments.  I would encourage him to put more funding into stem cell research, umbilical cord stem cells, using the patients own stem cells, and any other form of stem cells that might prove viable in restoring the lives of hundreds of thousands, even millions.

As I continued to think about all the things I wanted to say and ask for, in the name of autism, I thought of the families like mine who have been affected.  I don’t just mean on an emotional level, but financially as well.  A diagnosis of autism is devastating to any family financially.  We have chosen to pursue a more aggressive route than many can or want, but any family, even those who have not taken their child to foreign countries for stem cell treatments has found the cost of caring for a child with autism staggering.  For those who have little or no resources, who have to rely on social services to help them, who cannot afford to have a caregiver come to their home to give them a break, they live in a world starkly different from those with similar financial constraints who have neuro-typical children.

So Mr. President, on the off chance my name isn’t chosen and I don’t have the opportunity to sit down with you, can you please help galvanize the medical community and make autism a priority in research, can you look at what we’re doing when we cut so much funding from our already overwhelmed schools, can you earmark autism as something we need to find answers to?

To read about the genesis of this blog and Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

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Slow Progress – Autism

Posted on June 21, 2011 by | Leave a comment

Nic and Emma driving back to the San Francisco airport last week.

I love this photograph because you wouldn’t know anything was amiss.  It was taken on our drive back to the airport as we were leaving Napa, California last week.

I don’t know whether other parents of children with autism feel this way or not, but any time I see Emma interacting with another child in “typical” or more typical ways, my heart soars.  Whenever Emma acknowledges Nic’s presence, plays with him, tries to be with him or shows a desire to be with one of her cousins I am filled with hope.  These tiny moments are like little beacons in an often dark tunnel.

“Without motivation she will not try,” one of the many specialists we took Emma to once said to us.

When I decided I was going to teach Emma how to hug a family member, it was with the hope that she might find she liked the sensation and might take the initiative to hug one of us without being prompted to do so.

“Put your arms around and squeeze,” I instructed her.  Sometimes she seemed happy to do so, other times, she didn’t.  Usually she put her arms around the person while keeping her body from having direct contact, her head jutting away at an odd angle.  I probably would have had more luck teaching her the art of the air kiss, she would like that (which says something about my waspy heritage).

As much as Emma does not appear to derive much pleasure from hugging while standing, she loves to get into Richard and my bed in the mornings and cuddle.  She aligns her body with mine and lies as close to me as she physically can.  Often she will pull my arms around her so they are holding her in a snug embrace.  Other times she will run up to one of us and give one of us a kiss or will climb into our lap.  I take it as progress.  It reminds me of a blog post I wrote over a year ago now when Emma embraced me as I was standing in the kitchen.  I was in shock because it was unprecedented.  Now those sorts of spontaneous embraces are more commonplace.  But it shows progress.  Or what I think of as progress.

One of the things about an autism diagnosis that makes me sad is the thought that my child may not have the experience of friendships.  But as Emma matures, I have learned to redefine what “friendship” means.  And I have seen that in Emma’s own way she does have friends, children she prefers to be with.  Emma’s friendships do not include secrets or talking or sleepovers.  They do not include making bracelets for each other and excluding other children in a show of preference.  Emma does not know about cliques, gossip, comparing, jealousy or what it means to be “cool”.  Emma is thankfully oblivious to all of those social constructs we try so desperately to shield our neuro-typical children from.

Emma is present, almost always in the moment.  I don’t think she worries a great deal about the future, she just is.

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

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“Go Back” – Autism

Posted on June 20, 2011 by | Leave a comment

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

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

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

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

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

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

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Travel Plans Gone Awry

Posted on June 15, 2011 by | Leave a comment

To pick up from where I left off, Emma did extremely well on the airplane and on the long car trip up to Napa, California.  She was ecstatic, if not more than a little tired when we finally reached the Bed and Breakfast that night.  There were others of us who did not fare as well.

The airlines arbitrarily changed all of our reserved seats, so that each of us now occupied a middle seat and no two of us were seated together.  When Richard called to complain and have our former seats restored, they professed confusion and ultimately said we would have to figure it out, despite the fact that we told them we were traveling with two children, one of whom was AUTISTIC!   Richard spent a good three hours on the phone Thursday afternoon, instead of packing, not an ideal way to spend the day.  I had a moment, during the second or third phone call to the airlines, when I wondered how it was even legal, let alone ethical for them to split up a family and not have even the children seated next to their parent.

But we got through it, though not because the airline did anything to help us.  I sat in the back of the airplane with Nic and my cousin, Alexandra.  Richard, Joe and Emma were able to snag seats together closer to the front.  A number of kind people were willing to change their seats to allow this to happen.  At one point we narrowly avoided a full melt down when Emma lost a piece of her blanket, now a three inch square of green fabric, which had inadvertently fallen on top of an elderly woman’s neatly coiffed hair who had fallen asleep in front of Emma.  Joe managed to deftly pluck the missing shred from the top of the woman’s head without waking her and returned it to a whimpering Emma.  Disaster averted.

The B&B was lovely.  Cedar Gables, whose wonderful owners prepared delicious breakfasts of homemade apple fritters, muffins and scones accompanied by eggs, bacon, sausages and fresh fruit each morning.  Because the entire place was overrun with my family members, Emma was able to run around in her nightdress, slide on the wooden bannister and blow up her balloons, then release them so they made a screeching noise as they whipped over the heads of unsuspecting relatives before resting on various ledges and window sills.

My brother’s wedding was lovely and Monday we headed back to the airport where I had to leave my family to return to Aspen, where I am reopening my store for the summer, while Richard returned home to New York with the children.

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

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Que Sera, Sera

Posted on June 3, 2011 by | Leave a comment

I’m the silent partner. On Emma’s Hope Book anyway. It’s been a long time since I posted an entry. Ariane has always been the driving (and writing) force of Emma’s Hope Book, but I’ve been completely MIA lately. I went on interferon/ribovirin treatment two months ago. I knew the side effects were going to be extreme, but it turned out to be much worse than I could have imagined – one of those cases where if the disease doesn’t kill you, the cure will. I was basically an invalid, physically and mentally. I had to quit the treatment just so I could function and it took a month before I felt well again.

Ariane did an amazing job holding down the fort while I was laid up. She does an amazing job all the time. I’m very lucky and very grateful. Frankly, it’s been a rough patch for all of us lately. “We’ll get through this,” Ariane said a few minutes ago, kissing the top of my head as she scurried back and forth, preparing for a jewelry trunk show.

“Yep,” I nodded, “we always do.”

Of course, exactly what “this” means is open to debate. I guess it means “today”, because our lives never seem to get less complicated, difficult or worrisome for any significant length of time. This is true of any family I imagine, but Emma’s autism contributes greatly to our never-ending “whack-a-mole” game.

Her progress with language, reading and writing continues at a steady pace – a daily miracle from my perspective. Yet at the same time, she has had a recurrence of her difficulties with being able to go to the bathroom, which we thought was long behind us. Two steps forward, one step back.

I finished my novel a while ago and it is being shopped around by my agent. Ariane submitted a proposal for a book about Emma and our family. Both of us are stressed, bracing ourselves and hoping for good news. The day before I went on the interferon treatment, a conflict with my business partner developed that seems irresolvable, adding to the career pressure. Obviously, I would prefer to have enough success as a writer to provide well for the family, just as Ariane would like her jewelry business and her own writing efforts to be wildly prosperous. I’m sure they will be. It’s a lot easier for me to have faith in Ariane’s talents and potential for good fortune. I come from Irish stock.

Every night for the last week Emma has gone to bed listening to a CD of lullabies recorded by the talented and lovely Alycea Ench. The first song is “Que Sera, Sera.”

The second is “Somewhere Over the Rainbow.” I sit in bed with Emma and listen to these incredibly poignant melodies and lyrics, so full of hope and unattainable longing. Do they speak to Emma with the same desperate yearning I hear? Does she question whether she will ever have a chance to experience the normal phases of life the rest of us take for granted? Or does she just like listening to the Alycea’s lovely voice as she sings:

Que Sera, Sera

When I was just a little girl

I asked my mother, “What will I be?”

“Will I be pretty? Will I be rich?”

Here’s what she said to me:

Que Sera, Sera

Whatever will be will be

The future’s not ours to see

Que Sera Sera

What will be will be.

When I was young I fell in love

I asked my sweetheart, “What lies ahead?”

“Will we have rainbows day after day?”

Here’s what my sweetheart said:

Que Sera Sera

Whatever will be will be

The future’s not ours to see

Que Sera Sera

What will be will be.

Now I have children of my own

They ask their mother, “What will I be?”

“Will I be handsome? Will I be rich?”

I tell them tenderly:

Que Sera Sera

Whatever will be will be

The future’s not ours to see

Que Sera Sera

What will be will be.

Somewhere over the rainbow

Somewhere over the rainbow

Way up high,

There’s a land that I heard of

Once in a lullaby.

Somewhere over the rainbow

Skies are blue,

And the dreams that you dare to dream

Really do come true.

Someday I’ll wish upon a star

And wake up where the clouds are far

behind me.

Where troubles melt like lemon drops

away above the chimney tops.

That’s where you’ll find me.

Somewhere over the rainbow

Bluebirds fly.

Birds fly over the rainbow.

Why then, oh why can’t I?

If happy little bluebirds fly

Beyond the rainbow

Why, oh why can’t I?

As Ariane said yesterday in her post, unless Emma is stressed out about one of her OCD issues or unable to attain her most basic needs, she is so incredibly happy in the moment. Blissful. So I doubt very much that she questions what the future holds in store for her — any more than she wonders what lies over the rainbow. She is here. Now. It is Ariane and I that so achingly desire for her to feel and experience all the things kids her age normally go through: having friends, playing games, chattering back and forth.  And as she grows older: dating, falling in love, raising her own family.

Just trying to imagine that kind of normal life for Emma and the rest of us is almost impossible for me. As I write this, I cannot clearly picture it. Even as a fantasy, this truly lies over the rainbow. But even if I can’t visualize it, I have never lost hope that it is possible. In fact, I believe with all my heart that it will happen — someday, somehow – and our little bluebird will fly.

In the meantime, we will get through this — today. As for tomorrow? Que, Sera, Sera.

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Hide and Seek

Posted on May 26, 2011 by | 2 comments

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

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Emma and Art – Part 2

Posted on May 12, 2011 by | 7 comments

As promised, I arrived home yesterday evening and found the art bin in Emma’s room.  After brushing off the dust I pulled it out into the living room.  “Hey Em.  Look!  Let’s make something together!” I gestured at the pop beads, the wooden beads, the string, the glitter, paint and brushes.

“No, no, no, no, no!”  Emma said, casting an eye at the art supplies before returning to the vigorous twirling of her velcro strip.

“Oh come on!  Look at these things.  These look great.  Let’s make something with these,” I said, digging into the bin and producing a bag filled with brightly colored wooden beads.

“No, no, no, no, no!  Mommy go away!  Go away!”  she said, whipping her plastic strip around so that it made crackling noises.

I sat there looking at the bin and then at her.  “Are you sure?” I asked.

“Mommy no!  Go away!   Go away!   Go away!”  she said very quickly so the words all slurred into each other.

“Go away!” is new for Emma.  She says this either when she is going into the bathroom, a very good sign in my opinion, or when she is doing something she thinks we might object to.  That she was now using these same words to indicate displeasure with a suggestion seemed like an advancement as well.  This is a child who just months ago might have bitten her arm or hand or punched herself in the face to express her dislike of an idea.  I was relieved to hear her say – Go away!   And while it might not be considered the most polite response to someone who is trying to engage in an activity with her, it’s certainly a step up from self injurious behavior.  We parents of autistic children take what we can get.

An old familiar feeling of determination crept into my thinking, as I sat on the floor with the art bin before me.  Right, I thought, we need better art supplies.  Wooden beads and pop beads just weren’t going to do it.  As I considered what sorts of things to look for, it occurred to me that I have a great many things at my studio which I will never use.  Drilled gemstones I bought years ago when I first began designing jewelry, glass beads, cooper and brass wire, as well as lots of silk thread in dozens of beautiful colors.   I have a wide assortment of origami paper, leftover from the year I became obsessed with paper folding while pregnant with my son, Nic.  We have glitter, paint, construction paper, tissue paper, scraps of hand pressed paper, pipe cleaners, all the things one might need to make a wide variety of art projects.

“Okay, Em.  Don’t worry.  We can make something together another time,” I said, dragging the bin back into her room.

Emma followed me.  She bent her head down so that it was about an inch away from mine and said, “Play – Don’t say Mommy?”

“Don’t say Mommy” is a chase game where Emma and sometimes her brother Nic will come very close and say, “Don’t (two second pause)  say  (two second pause)  Mommy! (shouted)” and then they run screaming through the house while I chase them.  This game usually involves lots of doors being slammed and beds being torn apart as they burrow under sheets and blankets.  A variation on this game is – don’t say Daddy!  When we catch up to them, we walk very, very slowly giving them plenty of time to hide and ruin whatever bedroom they’ve sought refuge in, we tear the blankets off them while saying in a loud voice, “AHHHHHHH!  There you are!  I found you!” followed by villinous sounding laughter and tickling until they cry for mercy.  This game can go on for a very long time, so we have found, for the sake of ourselves and our neighbors, it’s important to put limits on it.

“Okay, but just two games and then we have to get into PJ’s and brush teeth.”

Emma stared at me intently with a little grin on her face and a wild look in her eyes, “Okay, okay.  Don’t… say… Mommy!” and off she went like a shot, her feet thumping against the floor as she disappeared into our bedroom.

Art will have to wait one more day.

Emma’s art project brought home from school.

What makes these significant is the detail, the number of “bracelets” she made and the fine motor skills required to make them.  For any neuro-typical preschooler, these would be commonplace, but for Emma these bracelets show a marked improvement in her finger dexterity, concentration and focus, not to mention the sheer artistry. (Okay I’m totally biased, but they are pretty fabulous!)

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

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Our Family & Autism

Posted on May 9, 2011 by | 2 comments

Yesterday I slept in.  It was lovely.  When I woke Emma and Nic greeted me with a Happy Mother’s Day song (complete with pompoms and a loosely choreographed dance) that was so wonderful I wished I’d recorded it.  My thoughtful and doting husband made me a fabulous breakfast and then Emma and I went to her study room.  We are working on the concept of two or more as in – “Some frogs”, “What are these?”  “These are trucks.” etc.  After the study room we went swimming at the Y, something Emma has been requesting we do for weeks now.  It was completely empty and for the first half hour we had the entire pool to ourselves.  This is unheard of in New York City!  We then went to see Hoodwinked Too – a movie Nic has wanted to see since it came out, followed by dinner at a restaurant.  A little something for everyone.

For those of you who do not have an autistic family member this must seem like a perfectly normal way to spend a day.  But for those of you who are like us, you already know without me saying another word, how incredibly, gutsy and insane it is to even attempt the things I’ve just casually listed.  Let me explain.

Because of the issue of transitions, never easy for Emma, her very specific sensory issues coupled with her need for routine and sameness, a day as I’ve described can be a veritable minefield of upsets and cause untold anxiety for Emma. With this in mind we prepared Emma for the day by going over the key points with her – study room, lunch, swimming, movie in the movie theatre, dinner, cupcakes at home – and repeated this list throughout the day, often with Emma interjecting for clarification, “not movie at home, movie in movie theatre!”

The swimming was easy, it is something Emma absolutely loves to do and we try to arrange at least one day a week when she can go, though this isn’t always as simple in New York City as it may sound.  Needless to say we do not live in one of those coveted buildings in New York City with an indoor pool.  However, there are a number of excellent pools throughout Manhattan and so it is not impossible to arrange.  After we swam, (Emma was ecstatic and we all had a great time) we made our way to the movies.  This transition can be tough for Emma ending with protests, tears or worse.  Movies are not something she particularly enjoys and even though this was a kid friendly animated movie, Emma was just as likely to find it intolerable.  It is difficult for her to sit still through the trailers, she doesn’t like the 3-D glasses (I don’t either) and unless it has lots of music, the movie usually does not hold her interest for long.  Emma then will begin standing up in her chair, looking at the people sitting in back of us and saying in a very loud voice, “NO!  You have to be quiet!”  which they find utterly confusing as none of them have spoken.   Emma is just as likely to put her index finger to her lips and make a loud “SHHHHHHHH!” noise, followed by “You have to be quiet!”  Other movie goers find this equally baffling, as we do our best to quiet her.  We always come prepared knowing one of us may have to leave with her, taking her to a nearby playground until the movie is over.  But yesterday she sat through the entire movie, with very little squirming and no audible protest.

After the movie we walked to a restaurant, a little trendy upscale diner with loud rock and roll music (a plus for Emma & Nic who knew all the songs) and with fast service.  Even so, going out to eat is not something we do often as a family as it can end with drinks knocked over, loud utterances of “Time to go now!” from Emma or she will simply get up and leave with one of us racing after her.  This restaurant was one of those places that doesn’t really get crowded until after 8:00PM so we had no trouble securing one of their much sought after booths at 6:30PM.  Emma has such a limited number of foods she’ll eat, we came prepared with her favorites, which she happily ate when our food was served and then patiently waited for us to finish.

Nic and Emma sitting in a booth at the restaurant.

Richard, ever the thoughtful boy scout had bought cupcakes from Magnolia Bakery the day before, thinking Emma was more likely to get into the celebratory spirit if there were cupcakes for dessert waiting for us at home.  So after we ate our dinner we made a pit stop at a playground across the street before going home to eat cupcakes.

Except when we returned home and brought out the cupcakes Emma said, “No thank you,” and wandered off to her bedroom.

“Wow, that’s new!  She doesn’t want one?” I looked at Richard incredulous.

“Hey, everything changes,” Richard said with a shrug.

By 8:00PM both children were in their pj’s, teeth brushed and flossed and in bed.

It was a perfect Mother’s Day.

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

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Nic’s Birthday

Posted on April 19, 2011 by | Leave a comment

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

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Emma’s Birthday

Posted on January 18, 2011 by | 1 comment

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.

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Christmas

Posted on December 25, 2010 by | Leave a comment

Here’s the thing about Christmas with Emma – she has never shown any interest in it.  The whole Santa thing never held any appeal.  Fantasy is typically a difficult concept for autistic children to grasp.  Add to that her disinterest in most toys or anything which could be wrapped in paper with a bow and you have a huge part of what most children feel excitement for lost on Emma.  Since she loves to ski, we plan to spend tomorrow skiing with her.  We have a number of Christmas presents wrapped and under the tree, a Christmas stocking jammed with little gifts she may well reject or if she continues as she has in the past, will never even open.

Two Christmases ago we joked, after all her presents remained under the tree unwrapped, we would just save them and put them back under the tree the following year.  Our son, Nic, was justifiably horrified by both our jokes and the fact she couldn’t have cared less.

“Can I have them?” he asked.

“Nic, I guarantee you will not want the presents we’ve chosen for her,” we said.

“Well can I just open them at least,” Nic replied, unconvinced.

The following year we unpacked our suitcases and stored them in a little room upstairs where the children have stuffed animals and books.  There, in a pile, were Emma’s unopened gifts.  I felt sad, seeing them there, not because I want my children to be attached to things, but because it represents a lack of neuro-typical development.

Just as we always have a place setting at the dinner table for Emma, despite the fact she has not and will not, eat anything we prepare, unless it’s cupcakes or pudding for the past five years, we continue to have some presents for her under the tree every Christmas, just in case one day, one year, she decides it’s worth her time to see what’s under the wrapping paper.

Christmas is obviously representative of much more than giving and receiving gifts.  For Emma we must find other ways to express our love and appreciation, ways she can understand and recognize.   Perhaps the best way, is to do the things she loves with her – skiing, silly games, singing nonsense songs and just being with her.  Sometimes it takes a little girl with no interest in material possessions to remind us of what Christmas is really about.

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All Together

Posted on December 20, 2010 by | Leave a comment

Richard, Nic and Emma finally arrived in Aspen after a series of mishaps Thursday evening.  Emma saw me first and ran, as though heading for my arms, but at the last second, veered away, saying, “Hi Mommy!  It’s Mommy!”  and jumped up and down, pointing at me from about five feet away.

I caught her and said, “Hi Em!  Remember, arms around and squeeze!”  Which she did as I kissed both her cheeks.  I have been working with her on the art of hugging family members and though she hasn’t got it down yet, she at least understands that if you put your arms around the other person and squeeze, that will pass for an acceptable hug.  It’s a start, anyway.

Richard and Nic, on the other hand, returned my embraces easily and without hesitation.   This is my family and I am ecstatic to have them here with me through the holidays.

While we are here, Em is skiing with a buddy provided by Challenge Aspen.  (Except for today when it is so messy out with rain, slush & snow even Emma seemed less than enthusiastic.)  “Look!  It’s raining!  We cannot go skiing when it’s raining,” she said upon waking up this morning.  “That’s just silly!”  she added, pointing out the window at the rain.  And indeed, it did seem to be a bad idea, though there were the intrepid few, who defied all logic and were on the slopes, my brother and his wife being two of them.

I am relieved Emma was not among them, however, as the patches of sheer ice, mixed with the slush caused by the milder temperatures and rain, made for some interesting driving along our road.  I can only imagine what the skiing was like.

“Would you like me to read to you?” I asked Emma earlier this morning.

“Yes,” she said, sitting between my legs on the couch usually taken over by the dogs.  Emma pulled a blanket over us and leaned her head back against my chest.  I have been reading Balto, the Siberian husky whose statue forever memorializes him in New York City’s Central Park.  Emma, despite her fear of dogs loves the statue in Central Park and often climbs on it, as the photo below shows.

Emma seemed to enjoy the story and listened quietly as I read the last twenty pages to her.  When we finished the story, she looked out the window and said, “No, not going to go skiing!”  Go swimming at the ARC.  Go jump off the diving board into the cold water!”

“Yeah.  Okay.  That sounds like a good plan,” I said.

“Go swimming now,” Emma said.  Upon seeing my hesitation, she said, “You have to ask Mommy.  Mommy!  Can I go swimming at the ARC?”

“Em, you’ll go later, it’s not open yet.”

“You have to wait, it’s broken,” she said, looking at me to see if she’d gotten it right.

“No, it’s not broken, it’s just not open yet.  It’s too early,” I explained.

“It’s too early,” she said.  Then she peered out the window at the morning light and said, “You have to wait til it’s light out.”

“No, Em.  It’s light out, see?  We can see the mountains, but it’s too early for the pool to be open.  People are just waking up and having breakfast…”

“Later,” Emma said, clearly not interested in my long-winded explanation.

“Yes.  Just a little later.”

“One minute,” Em said.

“More than one minute,” I said, wondering if I should use the opportunity to bring over a clock and discuss the concept of time.

“Later,” Emma said with finality.

“Yes.”

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Theories

Posted on July 16, 2010 by | Leave a comment

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

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

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

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

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

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

“Yes,” he said.

“Great!  Tell me more.” I said.

“Emma is doing great. “

“And your theory is?” I prodded.

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

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

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

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

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

“Yup.  I like it,” he said.

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