Tag Archives: work

Bumps In The Road

Inevitably in life we have all experienced things that have forced us to slow down, perhaps take another route, do things differently than we would have liked.  I think of these things as bumps in the road.  I try to refrain from judging them as good or bad, but just as the way things are.  There are some moments I’m better at achieving this kind of calm perspective than others.  It’s easy for me to feel all that is happening at work is “horrible”, but the truth is, a series of events have been set into motion and I have had to make the decision to fight back, to defend myself or allow another person to harm me and in harming me, harm my family.

Emma experiences her own “bumps” along the way.  Things that happen, which force us to change well laid plans.  Plans she is excited about and is looking forward to.  But more and more, lately, Emma has taken these things in stride.  She is learning to adapt to a world that is often precarious, constantly changing and shifting.  It is a wonderful thing to witness.  We all must adapt to our ever changing circumstances.

Emma makes me happy –  Both my children do.  Try not to smile while looking at this next photograph.

I dare you.  No smiling.  Come on, it’s impossible not to feel a tiny degree of joy, right?  I love that.

Here’s another photograph that can’t help but bring a smile to my face.

This was done yesterday during Emma’s “study room”.  She is writing longer and more complex sentences.  Her reading is coming along beautifully.  Excuse me while I jump up and down with excitement!

So no matter how heinous things get at work, I have my family.  My beautiful, amazing family – and that’s all I need to bring things into the proper perspective.

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

Explaining Travel to Emma

I flew back to Aspen, Colorado yesterday, alone.  Explaining to Emma why I had to return so quickly was difficult.  First of all I don’t know how much she understands and since she cannot ask me questions the way her older, neuro-typical, brother, Nic does, I cannot know what goes through her mind.  So when I told both children ten days ago that I was going to have to go back to Aspen because of my store, Nic said, “NOOOOOO!  You only just came home!  That’s so unfair, Mom.  Why do you have to go back?”

Emma remained silent.  I explained that there were things I needed to take care of at the store, that it was part of the deal with owning one’s own business, it’s just what one has to do.  After awhile, Emma wandered away muttering, “Sleep, wake up, camp on the lake, sleep, wake up, get on airplane.”

Nic meanwhile was angry, then teary, then resigned.  “I know, honey.  It’s a drag.  But you, Daddy and Em will come out in August so it won’t be so long this time that we’re all apart.”

“No Mom.  It’s not a drag.  This sucks,” he said, before turning away from me, his arms crossed, to stare out the window.

“I’m so sorry, Nicky.”

And as sorry as I was that Nic was upset, I wondered what was going on through Emma’s mind.  Was she just accepting that this was how things were, did she have questions?  What was she feeling?

Impossible for me to know.

This past weekend I pulled out a calendar and went over it with Nic and Emma.  Pointing to various dates, I said, “Okay so this is when I have to leave.”

“Get on airplane, fly back to Aspen,” Emma said, looking at the box with the number 19 on it where my finger was positioned.

“Yeah.  That’s right Em.  That’s the day I have to go back.”

“Sleep, wake up, get on airplane,” she said.

“Just me, Em.  You guys are going to go to camp and stay in New York with Daddy,” I explained.  “Then look, on this day you, Daddy, Nic and Jackie are going to fly out to Aspen.  That’s in twelve days.  And here, this is when Joe comes out and Jackie has to go back, then here is when we all fly back to New York together.”  I looked at both of them.  “Okay?”

“I don’t want you to go again.  We’ve only had you for like three days,” Nic said.

“Two weeks.”  I put my arm around him.  “I know.  I know.”

“It’s not fair,” Nic said.

“Sleep, wake up, sleep wake up…”  Emma began, counting on her fingers how many sleep, wake ups it would be before they flew out to Aspen to meet me.  “Go to YMCA with just Mommy?”  Emma said after she had finished counting out 12 “sleep, wake ups”.

“No, Em.  But Daddy will take you.”

“Go to YMCA with just Daddy,” she repeated and then scooted away on her scooter.

Yesterday morning as I was gathering my things to go downstairs, Emma ran over to me and threw her arms around me.  “Bye Mommy!” She said, burying her face into me.

“I’m going to miss you so much, Em.”

“Miss you,” she said, before pulling away.

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

“I’m Home” – Autism

When I opened the door to our loft, Emma came tearing up on her scooter shouting, “Mommy’s back!  It’s Mommy!”

As I dropped my bags and opened my arms to greet her, she sped away.  Nic meanwhile rushed up to me and threw his arms around my waist.  “Mommy!” he cried, “It’s so good to have you home.  I missed you so much!”

As I hugged Nic and then Richard, I said to Emma, “Hey.  I want a hug from you too.  Come over here, Em!  Remember?  Put your arms around and …”

“Squeeze!”  she shouted, while complying.  She peered up at me, with an odd expression on her face.  Then she pointed to my face and said, “It’s Mommy.  Mommy came back,” as though she hadn’t been sure I would.

“I’m back Emmy.  It’s so good to be back.”

“Yeah, Mommy came back.  Mommy stayed at Granma’s house.  Mommy had to go away,” she said, nodding her head sympathetically.

“It’s okay, Em.  Now I’m home.  I’m not going anywhere.”

Nic then played five different songs on his new Alto Sax for me, two new songs which he composed for the piano and then plugged his electric guitar into his amp and riffed on several more.  Emma scooted around on her scooter and eventually it was time for everyone to go to bed.

“Mommy come to Emma’s room,” Emma said, taking me by the hand.

“Yes!” I said following her.

“Mommy’s back,” Emma whispered as she snuggled down under her blanket.

“Yes, Em.  I’m home,” I said stroking her cheek.

Later Nic expressed his upset that I was away for almost three weeks.  He was able to tell me that he didn’t like that I was gone for such a long time.  But Emma…  Emma doesn’t have the words to express her upset nor does she have the ability to ask me why I was away.  I can only hope she understands I had to go for work, but I don’t know that she does understand.  When she looked up at me earlier it was with a mixture of shock at seeing me again and happiness.  I don’t know whether I’m reading more into her expression than was actually there, but given that she isn’t able to ask me, who knows what reasons she applied to my absence.

“Go swimming with Mommy,” Emma whispered.

“Yes,” I said.  “We’ll do that tomorrow.”

“No, not going to go back to Aspen,” she said, holding my hand.

“Nope.  Tomorrow we’re going to spend the whole day together.”

We were quiet then.  “Mommy sing?” Emma said after awhile.

“Sure, Em.  Which one – Swing Low, Sweet Chariot or Summertime?”

“Swing Low first, then Summertime,” Emma said.

“I love you Em,” I whispered.

“So much,” Emma finished.

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

Going Home

I was suppose to be on the first plane out of Aspen this morning.  Which meant, if all went well, I would be on an 8:30AM flight out of Denver heading back to New York.  Barring any unforeseen delays I might even have gotten home before my children returned from their various summer activities.  To say, I was excited to see them this afternoon would be an understatement.  And that doesn’t include the excitement I feel in anticipation of seeing my husband, Richard who has single handedly shuttled one child or the other to camp, picked up said child, taken Emma to the doctor for her ongoing ear problems, dealt with all the daily problems that inevitably arise in caring for a family and home, fed both children, fed Merlin (our adored cat), watered my orchids, done the laundry, the grocery shopping, and did I mention he also managed to work?  Can I just say here that he is a man of all men?  Put the guy on a pedestal and allow me to genuflect.

As it turns out, I will not be on that first flight out of Aspen, nor on any flight leaving Aspen today.  In fact I cannot get a flight out until tomorrow.  I received the fateful call at around 11:30PM last night and my heart sank the minute I heard the phone ring.  I then called United to rebook my cancelled flight only to be told there was not a single seat anywhere that would eventually get me to New York.  So tomorrow I will (hopefully) be home and able to finally see my husband and children.

It will be interesting to see Emma.  Will I see progress?  I do not expect her to greet me with more than a passing – Hi Mommy!  She can be pretty casual about seeing one of us again, even if it’s been awhile.  It’s hard not to assume that means she doesn’t care or didn’t miss the person.  I think of it as more an expression of her autism than any suggestion of disregard.  I know a mother of a child with autism who hates when people label her child “autistic”.  She said – if someone has cancer, I don’t say, oh they are cancer.  My child is so much more than “autistic.”  Similarly Emma is not autism.  Emma is a little girl who has a series of neurological irregularities, which make her behave in a way that we call “autism”.  And it’s that wonderful little girl, my little Em, who happens to have been diagnosed with autism, whom I cannot wait to see.

Just one more day and a few thousand miles, before I can come home.

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

The Aspen Ideas Festival & Autism

I am going to a lecture at the Aspen Ideas Festival this morning at 7:45AM in the Doerr-Hosier building called: How to Recognize Happiness.  I am going because I’ve been told this session will include something about autism, though if one goes to the AIFestival web site it doesn’t mention autism.  But my source is a good one – in fact she is the one who organized the entire week long program, so I’m fairly confident she knows what she’s talking about.

If you don’t know about the Aspen Ideas Festival, it is a week long summer camp for adults.  Every day is packed with lectures, panel discussions, interviews, readings, film, videos, etc beginning at 7:45AM and ending well into the night, every day for seven days.  I’ve been lobbying for Ideas to include autism in their program now for the past year, so was pleased when I was informed they were doing one talk which would include autism.  I will report back tomorrow.

Meanwhile, Emma announced on the phone last night that:  “Mommy’s staying with Granma.  Mommy is in Colorado.”

To which I replied, “Yes, I am, Em.  But I’m coming home in three days!  Tomorrow’s Wednesday, then Thursday, then it’ll be Friday and I’ll be home!”

There was dead silence and then after about ten seconds she said, “Bye Mommy!”  I could hear Richard saying, “Wait Em!   Don’t hang up, don’t hang up!”

Apparently my promise that I’ll be returning home on Friday is one of those – I’ll believe it when I see it – situations.  Emma was not impressed.

A friend of mine suggested I stay in Aspen over the Fourth.  “I need to get home before my kids forget what I look like,” was my response.

Friday, Em.  I promise.

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

Autism and Parenting

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

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.