Tag Archives: birthdays

A Celebration With Some Unexpected Surprises

This past weekend we spent celebrating Emma’s birthday.  For the past few months we have been planning Emma’s birthday with her.  Emma was very specific.  She asked that we spend the night in a hotel that had a swimming pool followed by a party at the same place she takes gymnastics with her brother every weekend.  We visited the hotel with Emma before booking it.  The pool was on the roof and when we visited, the saline water was at a lovely 94 degrees.  We booked the place where she wanted her party and sent out invitations.  We called the hotel ahead of time to confirm they had wi-fi and a DVD player as Em wanted to bring her favorite Charlie Brown video.  Saturday afternoon we piled into a taxi, arrived at the hotel, settled into our room, donned our bathing suits and made our way to the roof where it was windy and quite cold, but looked forward to the lovely warm water awaiting us.

Emma jumped into the water without hesitation, with Richard following.  I turned as Richard gasped in surprise.  It was the sound someone makes when the wind’s been knocked out of them.  I stared at him.  “It’s really, really cold!” Richard said in answer to my confused look.

“Seriously?”

“Uh.  Yeah.  Feel it.”

Tentatively I dipped a hand into the water.  It was not a lovely 94 degrees, it wasn’t even a tolerable 84, in fact, it seemed unlikely that it was anywhere close to being “warm”.  The outside temperature had barely climbed above 35 degrees and the wind was brisk.  Nic took one look at my face and voiced what I was thinking, “There’s no way I’m getting into that water.”  Richard, being the champ that he is, hung in there for another ten minutes before getting out, his lips having turned blue and his teeth chattering, while Emma, being impervious to cold of any kind lasted another half an hour.

It's Cold!

The beauty of Manhattan awash in the afternoon light. Taken from the hotel roof’s pool.

Manhattan

Framed Sky – Taken from the hotel’s roof while Em and Richard swam

Framed Sky

The hotel assured us the pool would be warmer by the following day, so we promised to come back the next morning for a longer swim.  Our evening was lovely, the children had a blast, and the next morning, after a wonderful breakfast we headed back up to the pool.  This time Emma did not immediately jump in, but felt the water with her toe.  It was a little warmer, though not much, but despite its cold temperature we resolved to bite the bullet and swim anyway if Emma chose to jump in.  Eventually she did and was delighted when the rest of us followed her.  It was cold, very, very cold, but it was also beautiful up on that roof, with the sun shining and the gorgeous view of Manhattan spread out before us.  We swam laps and splashed and played and Emma had a wonderful time.  When we finally got out of the water, dried off and put on our fluffy robes, we snuggled together on an enormous wicker chair, Richard called “the egg”.

Nic and I in the “egg”

In the egg

Later that afternoon we went to the gym where we celebrated Emma’s birthday with half a dozen other children whom she’d specifically asked to have invited.

Over the years we have learned to involve Emma in every aspect of planning her birthday, doing what she requests as much as possible.  Despite some unexpected surprises we have gotten better and better at giving her what she wants rather than what we think she might want.  And over the years we get it right more and more.

Em with her string and her new book – Landon Bryce’s “I Love Being My Own Autistic Self!”

Presents

 

The Joys and Terror of Motorcycle Bubbles

When I went to get my Master’s degree in Creative Writing my favorite class was one in which we spent the entire semester dissecting two paragraphs from Virginia Woolf’s A Room Of One’s Own.   We spent two weeks on ONE sentence!  This was bliss as I’d never completely understood the word before.  Pure bliss.  Needless to say, I was the only student in a class of about 25, who felt this way.  Everyone else grumbled and complained, spoke of their excruciating boredom, many even transferred out of the class.  I couldn’t understand their feelings.  What was NOT to like?

I’m a big fan of the highlighter, so it was with some amusement that I read a note from Emma’s teacher last night, “She enjoys highlighting words at school and this will also help to increase her ability to read sight word vocabulary…”  Her teacher had thoughtfully included an enormous neon yellow highlighter in her binder!  Love that.    If I had a photo of a random page in Douglas Biklen’s book – Autism and the Myth of the Person Alone I would insert it here as almost every page has notations and sentences highlighted.  Such as this one from the chapter, Reflections on Language – Lucy Blackman:  “Birthdays were happy, exciting, chaotic, and connectional with food – the ultimate source of pleasure – so excitement was a birthday party.   But excitement, terror and fury are very similar emotions, so I still scream “birthday party” when expectations are more than I can cope with.”

In Aspen, Colorado where we go several times a year, they have fireworks at the foot of Aspen Mountain on the Fourth of July and again on New Year’s Eve.  Emma both looks forward to the beautiful display and is terrified by the sound they make.  She calls the fireworks “motorcycle bubbles” which is such a wonderfully descriptive phrasing of what she is seeing and hearing.  This idea that “excitement, terror and fury are similar emotions” is not something I’d considered before.  While walking the dogs on the ranch road with Emma, who has then (seemingly) randomly said “motorcycle bubbles”, I’m left wondering why she would say this.  Now I question whether her fear of dogs is similar to the terror/excitement she experiences from the fire works display.   She loves sitting in our neighbor’s house protected from the loud booming sounds, while still being able to see the beautiful colors of light raining down on to the mountain and town below.

Could this also be why she links rain to “motorcycle bubbles”?  Is rain equated with an electrical storm or the “raining” of lights during a firework display?  I can, literally, become lost in this kind of thinking.  I find it fascinating and exciting.  Like Virginia Woolf, whose writing I happen to be a fan of, Emma uses such disparate and surprising words to describe things.  I am reminded of the German word for “skyscraper”, the literal translation, I believe, is “cloud scratcher”.  How fantastic is that?  It’s beautifully descriptive, even poetic.

One of my favorite Cloud Scratchers – The Chrysler Building 

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Nic’s Birthday

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

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

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

For the record, it was 6:24AM.

A trip down memory lane through pictures and text…

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

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

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

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

On our honeymoon in Taxco where we all got sick.

Big Brother, Nic.

Growing up

In a flash –  12 years later 

Nic and Em

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

Happy Birthday Nic!

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

To read my guest post on Special Needs.com, click ‘here

 

An Easter Birthday Party

To Emma a party is a birthday party, no matter what we say to explain that this is not the case in every circumstance.  Yesterday was no different.  When Emma saw me pulling out the linen table cloth and setting the table for our Easter (or as we like to refer to it – Welcome to Spring) party she said, “It’s a birthday party!”

“No Em, it’s an easter party,” Richard said.

“Birthday party,” Emma insisted.

“Today is Easter.  We’re having a dinner party for Easter,” Richard explained.

“Easter birthday party!” Emma said, jumping up and down.

“Not a birthday party, just Easter,” Richard patiently corrected her.

Not easily swayed, Emma cheerfully said again, “Easter birthday party!”

“Whatever Dad,” Nic said, accompanied by the one-two punch that apparently afflicts all tweens – shrugging his shoulders and rolling his eyes.

“Hey Em, sometimes we have a party and it’s not for anyone’s birthday…” I began.

“Christmas,” Richard interjected.

“Thanksgiving,” I added.

“Valentines Day, no wait that’s Daddy’s birthday,” I said, catching myself and realizing this was only going to confuse the situation.

“Birthday party,” Emma chimed in.

“Except no one is having a birthday tonight.  We’re having people over just because it’s fun.”

At this point Emma wandered off, probably feeling we’d exhausted the subject.  A little later she returned to survey the cooking and, since I’d made cupcakes for her and Nic and his friend, knowing they probably wouldn’t eat the meringue & apricot extravaganza I’d made for the rest of us, to lick the icing.

As though to prove her point she said, pointing to the purple, blue and green frosting, “Yum!  Birthday cake,” Emma said.

“Easter cupcakes,” I said.

“For Easter,” Emma said, nodding her head.

“Yes!  That’s right.  For Easter.”

“Easter!” Emma said.  And then as she was walking away she said very quickly and under her breath, “Easter birthday party!”

For more on Emma’s journey through a childhood of autism and an actual birthday party go to:  EmmasHopeBook