Tag Archives: family

The Aftermath

Richard and I returned from Jerusalem and the icare4autism conference Friday evening.  It was so good to see Emma again after being away for an entire week. The three of us spent the weekend in NYC and then flew to Colorado where we were reunited with Nic (whom I haven’t seen in a month) looked after by my doting and wonderful mother.  I have at least three hours of recordings from the conference to transcribe.  I must write about the conference in greater detail, I have a great deal of work to do for my business, the one that actually brings in money, and I want and need to spend time with my family.  I’m tired.  That’s what I keep thinking.  But there’s more to it than that and I haven’t figured out yet what that exactly means.  There’s panic.  How am I going to get everything done?  But there’s something else, something I haven’t put my finger on yet.

It’s 4 AM (I’ve been up since 3) but you could tell me it was 1 in the afternoon and I’m so turned around I’d just nod my head.  So rather than say any more I’ll end with this – a little scene from last night.

Em:  Play duck, duck, goose?

Me:  Yeah, okay.

Em:  With you (points to me) and me (points to herself) and Nicky and Daddy and Granma?

My mother: What’s duck, duck, goose?

Nic:  You’ll see.

Everyone sits at the dining room table as Emma stands waiting. 

Em:  (Going around the table, while placing her hand on each person’s head)  Snow.  Snow.  Snow.  Snow.

My mother:  Should I do something?

Nic:  No Granma.  You have to wait.  She’ll say something different.

Em:  (Grinning, pats Granma on the head)  Raining!

Richard:  Oh no!  Emmy you have to pick someone else, Granma can’t run.

My mother:  (Looking horrified) I’m suppose to run?

Me:  (Laughing)  Yes, you’re suppose to run after her.

Em: (With mischievous grin)  Granma run?

Richard:  No, Emmy pick someone else, Granma can’t run.

Em: (Continues to go around the table) Snow. Snow.  (Puts hand on Richard’s head and hesitates.  Then shouts)  Raining!

This game continued for several rounds with Emma occasionally directing when things weren’t going as she felt they should.

Em:  Okay.  Last time for duck, duck, goose.  

When she’d finished going around the table, picked someone and after lots of screaming and laughing my mother said, “That was a great game!”

Em:  Play again?  (Looks around the table grinning)  Okay, okay, later.  Play duck, duck, goose later.  Tomorrow.

It’s good to be home.

Em on the High Line Sunday

Huffington Post, Life and What’s Really Important

My piece on the Aspen Ideas Festival has just been published on Huffington Post.  Click ‘here‘ to read.  I wrote a great many drafts before finally submitting the post that has been published.  It was a long night of writing and rewriting until finally I knew I couldn’t write about the Ideas Festival without writing about my grandfather, but that too, made me uneasy.

The truth is I have a great many feelings about my grandparents and the various institutions they created and left behind here in Aspen.  Mostly I am awed by Grandfather’s vision and determination to see his vision through, while also aware that my feelings have little to do with anything.  I never knew my grandfather, he died the year I was born.  However I did know my grandmother, Elizabeth Paepcke.  As a child I thought all grandparents were like mine.  I assumed my experience was everyone’s.  I don’t remember when it dawned on me that this assumption was incorrect, but it was around that time that I also learned having famous grandparents came with other assumptions about me and my family that had nothing to do with our actual lives.

“Friends” became tricky.  People wanted to be “friends” because of an idea they had and not because they actually wanted and liked who I was.  “I” was often inconsequential in such interactions, it was the idea of being close to someone else they were after.  That makes for some odd interactions and can be disconcerting, a kind of objectification of another human being, but something we, in a culture of celebrity adoration, often do.

When I began social “networking” I felt horrified by the things others suggested I do to help my business.  It felt false to me.  I found myself going home at night incredibly depressed.  I would lie awake and wonder where was I in all of this?  My desire to get my business off the ground could be seen as self promoting in a way that other people were not accused of.  So began my process of trying to untangle myself from two people who created organizations and institutions that have had a longstanding impact on a great many people and following my own passions and interests.  I don’t always get it right, I still get caught up in trying to sort out what it is I need and want to do and what I believe others want from me.  It’s a balance, but like everything, its progress and not perfection.

Last night Emma came to me with the keys to the 4-wheeler in her hand.  When we got outside and turned on the ignition, it began to rain.  Not a light sprinkling, but a downpour.  “Em, are you sure you want to go for a ride?  We’re going to get soaked,” I told her.

“Yes!  Drive on the 4-wheeler with Mommy!”  Emma said, without hesitation.

I remembered a time when I was very young, standing at our front door and looking out at the rain.  I told my mother I wanted to go swimming.  I remember she laughed and said I couldn’t go swimming because it was raining, which made no sense to me.  As I remembered this, I zipped up my hoodie, took my glasses off and said, “Okay Em, hang on!” and put the 4-wheeler in reverse, before roaring off down the ranch road.   Emma clasped her arms around my waist and lay her head on my back as the rain pounded down on us.  It was bliss.  As we headed back to the house, completely soaked, I thought Em is going to be okay.  And then I amended that thought and said to myself, Emma IS okay.  I felt such a surge of relief, I began to cry.

I’m bombing down the road, with Emma clinging to my back and humming, in a torrential downpour, crying, soaking wet, and feeling euphoric.

These moments of pure joy shared with another human being, that’s what is important, everything else pales.

Happy Fourth of July!

View of the Rockies taken from the ranch while on the 4-wheeler

An Ode To Richard

I’m not trying to confuse anyone.  I post Monday through Friday.  Father’s Day was yesterday, so technically, writing an “Ode to Richard” today makes more sense than posting it last Friday when it would have been more than 48 hours away as opposed to about ten (at the time of this writing.)  Or so goes my convoluted logic.

Father’s Day, 2012 – Richard walking along the Hudson River with Emma and Nic

Autism doesn’t say much about all those dads out there who are tirelessly working to help their autistic children.  I know a few of them, but the one I know best, obviously is my husband, Richard.  This post is for him.

An Ode To Richard

You didn’t have a role model in your own father, yet you’ve managed to become one to your two children, Nic and Emma.

You’ve taken the traumas of your past, looked at them, dissected them and in doing so, pushed yourself to make sure you won’t repeat their lessons.

You are strong and secure enough to know that men can and do cry and those tears in no way diminish who you are, but serve to make you even more courageous and brave.

Your sense of humor has taught your children that nothing is so serious we cannot laugh.

By pursuing your dreams and doggedly doing what you love, you have shown them that they too can dream.

By never giving up, persevering and following your heart instead of a career you detest, but that will ensure a large income, you have encouraged them to follow their own.

By working tirelessly toward a goal, no matter how many obstacles have been thrown in your path, you have taught them to never give up.

By never accepting the word ‘no’ when applied to something you want, you have taught your children that what they want and care about is important.  You have taught them that they are important.

Through your compassion you show your children the path leading toward humanity, love and kindness and away from violence, cruelty and narcissism.

By giving your children your time, by enjoying their presence, by actively participating in their daily struggles, you have given them a gift no one will ever be able to take from them.

You have provided them with a role model so that they may not have to work as hard as you have.

You have given them the gift of knowing they are loved by their father, accepted completely for who they are and who they will become and in doing so you have provided them with a stability and security no structure or amount of money can.

You have provided them with a map, to help them navigate this life.

In giving, you have received.  In listening,  you have been heard.   In leading, you have been led.  In loving them, you are loved.  And yet you do all of this, not because you want anything in return, you do all of this because this is who you are.

To Richard.  My love.  My partner.  My inspiration.

Related Articles:

Richard, Oxytocin, Literacy & Love – Not Necessarily in That Order

Aspen, Work and Richard

Marriage – Part I

Marriage – Part II

This one is for the dads (Stuart Duncan’s Blog – Autism From a Father’s Point of View)

Breaking Routines

I have written about Emma’s need for routines.  Like many children with autism, the desire to do the same thing, whether it’s watch Mary Poppins for the two thousandth time (not an exaggeration) or go to the Central Park Zoo, followed by a visit to FAO Schwartz and ending with a visit to the American Museum of Natural History, has an obsessive compulsive urgency to it.  Emma has gotten much, much better about being more flexible, but this Sunday morning Emma became fixated on going to the zoo.  Despite the fact she went to the Bronx Zoo with a caregiver the weekend before and the Central Park Zoo the weekend before that, despite the fact going to the zoo is less about leisurely strolling through the various artificial habitats and looking at the animals who reside there and very much about a specific route that must be held to.

During those increasingly rare times I have indulged Emma’s request to go to a place, like the zoo, I end up running after her while she zips from one thing to the next.  At the Central Park Zoo, given her preference, she will begin with a visit to the bat cave, racing past the exotic birds, stand for less than three minutes peering into the dark cave while saying, “Look at the bats!  Be careful, the bats will bite you!” before tearing off, regardless of what I might think to say to engage her in an attempt to slow the routine down, past the Colobus Monkeys and outside again to stare at some other type of monkey who reside on a few strategically placed rocks in the middle of a man-made lake.  Then it’s off to see the old, decrepit and now blind seal, into the penguin and puffin house, then back outside to watch the sea lions being fed.  If we’ve missed a feeding, we must wait until the next feeding.  Emma will patiently sit until the next show and then watch until the last unfortunate fish has been tossed into the gaping mouth of a lucky sea lion, before we are allowed to leave.

But Sunday is the day we try to do something together as a family.  Sunday is the day we attempt to take everyone’s desires into consideration.  Sundays can be difficult.  Nic, more often than not, wants to go see a movie or get together with a family we know who has children Nic’s age, Richard, being the amazing man that he is, is often game to go with the flow and I will do just about anything that doesn’t involve going to one of Emma’s favored haunts.  (Lest anyone think I’m a dreadful mother, may I just defend myself here and say I have been to the American Museum of Natural History several thousand times and would be grateful if I never went there again, literally, for the rest of my life, likewise to the zoo, any zoo for that matter and, while we’re at it, any carousel, anywhere in the entire world.)  It may sound harsh, but there it is.

So when Emma launched in about going to the zoo this past Sunday morning, I said simply, “Not today, Em.”

“Go with Mommy!”  Emma cried pointing at me.  “Just you and me, go to the zoo.”

It was heartbreaking to hear her carefully using the correct pronouns, requesting me, specifically.  Never-the-less I stood firm.  Then Emma brought out the big guns.  “Mommy talk to Daddy,” she cried.  “Mommy talk to Daddy about the zoo.”   It was a stroke of manipulative genius, pitting one parent against the other, knowing that where Mommy wasn’t caving, Daddy just might.  I actually had to leave the room, I felt such a welling up of pride.  She’s becoming quite the negotiator I thought, as I prepared for our “study room” session.

By the time Emma was halfway into our literacy session, the obsession with the zoo had ebbed and when we ended our session with sitting still for five minutes, the obsessive grip no longer held her.   We ended up having a lovely Sunday with Nic and Emma going to their gymnastics class, on the way to Union Square we happened upon an Occupy Wall Street protest, giving me ample subject matter to photograph, before meeting some friends in Union Square.  Emma and I made a brief visit to Barnes and Noble and then home, where we did some more literacy work before Nic and I made custom made hamburgers, cole slaw and french fries for dinner – inspired by the Food network’s favorite burgers show, which aired over the weekend – only ours were better.

Occupy Wall Street Protest

Em waiting for me

The Family – Who’s that devilishly handsome man (Gasp!) with those two adorable children?

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

Nic’s Birthday

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

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

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

“Birthday at Elite gymnastics!”  Emma replied.

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

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

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

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

“Well no.  Not any gymnastics.”

Emma was silent.

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

“Yes,” Emma said.

“Okay.  What?”

“Happy Birthday Nicky!”

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

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

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

Then she gave him a kiss on the cheek.

Happy Birthday Nic!

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

Merlin amidst wrapping paper

Nic shows off his birthday haul.

Happy Birthday Nic!

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

Aspen, Work & Richard

I am in Aspen working, having left Richard and the children back in New York.  Emma’s ears continue to hurt her.   Richard had to take her to an ear specialist yesterday afternoon.  The last few times I’ve called I could hear Emma in the background crying plaintively, “I need help!  Ears popping!”.

I don’t know what it’s like to be a father leaving his wife and children behind for work, but I can tell you as a Mom, it feels pretty awful.  I feel terrible that Richard is left coping with the myriad details required, the organizing of both children, dealing with one who doesn’t feel great, getting referrals to doctors, arranging appointments, ensuring Nic is taken care of, juggling IEP meetings, seeing Emma’s neurologist, rearranging his own work schedule to accommodate all of the above.

And meanwhile here I am in Aspen.  Even when you tell someone you’re there to WORK, you can see the little smile on their face, “Uh-huh,” they usually respond.  “It’s gotta be tough.”

So no, one cannot expect much sympathy, and if I go on about how tired I am, I can expect little other than a slight nod of the head followed by the slightly sarcastic, “Yeah, I bet.”  Sometimes they’ll even add a barely audible, “Ski much?”

Despite the fact I have no intention of skiing, am working everyday most people find any utterance even remotely sounding like a complaint, tiresome.  Which makes Richard’s response all the more remarkable.

“Of course you must go,” was his reply when I told him about some of my commitments here.  There was no need for discussion.  It was a given, I would go, Richard and the children will join me in another five days.  I am grateful to him for that.

When I call then and hear Emma’s little voice whimpering and Richard’s exhausted voice telling me, “Everything’s fine,” I know he’s putting on a brave front.  I know how exhausting it is to hold down the fort in the other’s absence.   I know he’s worried about Emma, as am I.  The difference is he’s the one who is making and keeping the appointments with all the various doctors, not me.  And no matter how hard I am working, no matter how many hours I put in, it doesn’t compare to what Richard is doing back in New York.  As I write this I can look out my window and gaze upon the Rocky Mountains jutting up, the blue sky contrasted against their snowy peaks.  My concerns for Emma are muted by physical miles, I cannot hear her distress except when I call.  I am not in the trenches with Richard.

I am lucky, very, very lucky.

Christmas

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.

The Next 32 Hours

To say I am counting the hours until my family’s arrival would not be an exaggeration,  32 hours, weather permitting.  And during those 32 hours I will have opened my store, launched my e-commerce web site: www.arianezurcher.com, worked an eight hour shift and gone to see my friend and inspiration to all of us, Amanda Boxtel demonstrate Berkeley Bionics eLegs at the Aspen Club this evening.

Richard will be equally busy, going to Emma’s school for her parent/teacher conference, working, packing, going to Nic’s school Winter Concert where he will play “Lean on Me” on his clarinet (!) making sure Merlin is cared for while we are away, before getting to the airport and onto the airplane.  Flying with Nic and Emma is always stressful and anxiety producing even though Emma is one of the world’s best travelers.  It is more the mental gymnastics one inevitably goes through before the fact which causes the most worry – What if she has to pee and the plane is stuck on the runway in some endless and unforeseen delay?  What if she freaks out for some unspecified reason?  What if her favorite DVD doesn’t play properly?  What if, once in Denver, the plane to Aspen is delayed or worse, cancelled?  What if…

I have flown with both children a number of times on my own and it’s always nerve wracking.  The good news is, even with some substantial delays and mishaps, both Nic and Emma are terrific travelers.  Emma loves when the plane begins zooming along the runway and in the past would race her legs up and down as though she were running, propelling the plane forward as she laughed and made buzzing noises.  I haven’t seen her do that in over a year now, but it was hilarious when she use to.  Now, more likely, she will simply gaze out the window with a little content smile and occasionally hum.  She knows she will have her Cokie or as her head teacher at school writes – Coqui – which I rather like, giving the tattered blanket a certain, je ne ce quoi.  Emma has been talking about the fact she will have full access to Cokie on the airplane for over a month now.  “Take Cokie on the airplane,” she has said more than a few times.

“Yes, Em.  You’ll have Cokie with you.”

“Have Cokie on the airplane,” Emma will repeat as if confirming an important appointment.

“Yes,” we respond.

“Good!  Take Cokie on the airplane.”  Then she will nod her head and grin.

Both Emma and Nic have been looking forward to coming out to Aspen for a while now.  Nic cannot wait to see his beloved Granma and her dogs and Emma can’t wait to see her Granma, go skiing with her Uncle Victor and Aunt Susan and go swimming at the ARC (Aspen Recreation Center) after skiing.  I cannot wait to see both children and my husband tomorrow afternoon and have not thought much beyond catching sight of them and just hugging all of them.

Marriage (Part I)

(*I have come to regret beginning this post with these statistics as I think it takes away from the main point.  ALL marriages will inevitably encounter stresses that will place a strain on the best of marriages.  It is not about blaming autism.  It is life.)

The divorce rate of parents with an autistic child is said to be 80%.  However I have found no studies to support this statement or even any articles showing where this seemingly arbitrary number came from.  Challenges of any kind can strain relationships.  As the parent of an autistic child in addition to the stress and financial strain, there are the legal hoops one must jump through to get ones child basic services with the Board of Education, the Board of Public Transportation, insurance companies, the lawyers, the hearings, the paper work and the sheer bureaucracy of advocating for your child.  It is the workload equivalent to running a small business if not more.  When you add the fact that many autistic children have disruptive sleep patterns causing further complications to a family already struggling to cope, you have a situation that will test the strength of any marriage, no matter how solid.

Richard and I have certainly had to weather our disagreements, though fortunately around the big issues:  methodologies, treatments, our vision and hopes for Emma – we agree.  I know of a couple of instances in which one of the couple just couldn’t cope any more and the diagnosis pushed them over the edge and out of the marriage.   I remember early on after we had received Emma’s diagnosis I looked at Richard and said, “How are we going to get through this?”

Richard replied, “Together.”

And for us in many ways it’s that simple.  (Though I need to be reminded of this from time to time.)  We don’t do it alone.  When I am having a moment usually in the middle of the night perseverating on some worry about something I have little control over or which simply hasn’t happened yet – will Emma ever live independently or who will take care of her when we die or will she ever be able to read and write or will she need tens of thousands of dollars worth of dental work because she still sucks her thumb (yes) or will she ever be out of diapers (these are a few examples from my current playlist) or any number of concerns ricocheting around in my head like a pinball, Richard will reassure me, “It’s going to be okay, we’ll get through this.”  There are times when I feel as though I am trying to claw my way out from a dark abyss of fear that ambushes me, pulling me down.  Richard and I have a kind of short hand for this.

“You’re spinning out,” he’ll say after listening to me for a while.

“I know,” I will reply and I do know.  The knowledge doesn’t help me stop myself.

And then he talks me down or if that fails, because I can be stubborn, he will listen a while longer before finally interrupting me with, “Okay, my turn.  You’re totally out of control.”  His is the blunt, direct approach.  It can be quite productive.  He will then go on to point out why my thinking is deranged.  90% of the time I can listen to him and calm down.  Richard has his own version of spinning out, but it’s usually work-related.  Which isn’t to say he doesn’t worry about Emma or Nic, he does, it’s just he is better at having some perspective on them and doesn’t get as easily thrown into the “doomsday pit” of despair.

When Emma is having a melt down, which can go on for quite some time, we pitch hit.  One of us will try to soothe her and when the other sees it isn’t going well – our patience is fraying – the other will jump in.  Most of the time one of us is able to maintain a calm the other is lacking.  Of course this leaves poor Nic fending for himself.  Though Nic, too, has gotten quite adept at calming things down.  “Here’s what you guys need to do,” he’ll say, looking up from his latest drawing of some fanged, blood dripping, all powerful monster.  “You can’t let her get away with this.  She won’t stop and she needs to learn she has to stop.”

Richard and I look at each other with raised eyebrows.

“You need to choose the thing that’s most important and work with her on that first.  Because otherwise it’s just too much,” he’ll add.

Smart kid.  (A post devoted to siblings of autistic children next week.)