Tag Archives: New York City

Isolation, Autism and a New Camera!

It’s interesting to note that autism, something defined by a lack of social skills, which in turn can lead to isolation in the children who are diagnosed with it, can have an isolating affect on the parents of those children for very different reasons.

How many of us have lost friends, seen some slip away after our child’s diagnosis while others we chose to avoid because they seemed unable to understand?  And what about family members?  When Emma was first diagnosed I felt such fear and worry and turned to a number of girlfriends I had at the time.  A couple of them were suddenly too busy to get together, while others just didn’t reach out.  Perhaps it was too much for them, too painful, who knows, but I felt incredibly sad when I realized those friendships were not able to withstand the diagnosis.

Now seven years later since we received Emma’s diagnosis I have new friends, many I’ve never met, others are from my life before, some even came back after having left for awhile.  What is wonderful though, is that those that are no longer in my life, I rarely miss and those that are in my life I am grateful for.

On an entirely separate note – Richard, my wonderful husband, bought me an early Christmas present, a new camera!

Emma at gymnastics on Sunday

Getting a little help from Brett

This morning waiting for the school bus

This is a hawk we saw in Union Square Park on Sunday!  (This has nothing to do with autism, I know, but isn’t he beautiful?)

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

What is

A Zen buddhist teacher told me once – anything that happens in life is an opportunity to practice.  I remember my feeling of irritation when she first said that to me.  As the years pass I think of her and her statement often.  Whatever it is that is happening – if I can suspend my judgement and not label it as good or bad, but just as what is, I have taken away one more obstacle.

I think of Emma, beautiful, amazing Emma, who is unique and like no other child.  Her autism is neither good nor bad, but what is.   Even as I write this I can feel the tug in my chest, the little voice whispering to me, no – it is bad.  As though by accepting I will have given up.  As if my judgement will somehow make it go away.  As though the label will somehow change it.  I am not in the we-must-accept-and-do-nothing group.  I am in the – my labeling her autism or anything else for that matter as bad does not take it away – camp.  It just adds one more thing that I am fighting.

My practice is to continue the fine art of balancing what is with what I wish to be. What I wish for, what I hope for, what I work so hard for is to help Emma become more independent.  To celebrate her strengths, to encourage her to sing, to join her in her joy of music, to push her to work on her spelling, reading, writing, typing, math and language.  To gently lead her away from her rigidity, to embrace her silliness, to urge her to explore and be curious.  While I am doing that, I continually remind myself that each moment is a moment that simply is.

Emma is and for that I am eternally grateful.

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

New York City Empire State Building taken from the High Line last night.

Saturday with Em

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

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

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

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

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

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

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

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

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

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

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

Yup.  Everything changes.

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