Tag Archives: Marriage

Man and Woman – A Tale

This story was written by Emma and was inspired by a photograph she was shown of a small house built in the middle of a lake atop a large rock with steps carved into the rock leading into the water.  Against one side of the house was a kayak and paddle.  (To read more about how Emma is writing, please click, ‘here‘ and ‘here‘.)

“Man and woman landed into marriage.  Both worked hard to make thousands of pennies.  There was trouble when they decided on what to do with the thousands.  Woman wanted to buy a boat; man did not agree.  Man and woman gave fighting a try, but it was not for them.

Welcome to their new home.”

Earlier when first shown the photograph (I’ve posted it below) and asked to make a comment about it, Emma wrote, “There is many reasons to believe it is fall.”

When asked to write one question she thought people would ask the person(s) who live in this house, she wrote, “Do you know how to swim?”


The Mean Voice

I have struggled with a mean voice in my head my entire life.  “You messed up,” “You can’t do anything right,” “You’re a failure”, “What were you thinking?” “Why did you do/say/think that?”  “How could you not have known?”  When I was young I thought I was the only one who had it.  I believed the voice.  I thought it spoke the truth.  I felt crushed by it.  It was a condemning voice and I thought it would help me become a better person if I listened to it.  I was wrong about that.  These days I don’t allow myself to believe it, but now and then I can’t help myself and those are the days when everything is harder.  Those are the days when the people I love will suffer because that voice isn’t content to stay internal for long.  No matter how hard I try, no matter how much I tell myself I’m not going to repeat those hurtful words to someone else, I end up doing so because self-hatred is never kept completely contained.  Those of us who struggle with self loathing tend to hurt others a great deal, which then feeds our self-loathing.

“Self knowledge avails us nothing.”  ~ Big Book of Alcoholics Anonymous.

Awareness, acceptance, action.  These are the steps I know to take if I want to change my behavior.  These are the things I must do on a daily basis, sometimes hour by hour.  These are the things I stumble over, like giant boulders in my path.  Someone else yelling at me to stop listening to the voices does NOT help.  Someone else scolding me for having hurtful voices in my head only ADDS to my stress and the noise, it does not lessen it.  Awareness – I have to acknowledge I’m listening to the cruel voice.  Acceptance – I have to accept I’m in a dark place, that this is what is going on, that this is my reality in this moment, without judgement, without condemnation.  Breathe.   Action – this is the most difficult piece.  What actions can I take now that I’ve become aware and have accepted that this is where I am?  Often action has nothing to do with any of it.  For me action works best in the form of a small or big act of kindness. If I’m in self-pity or when I have tremendous ego, an anonymous act of kindness is by far the most helpful and centering thing I can do.

Feel the pain of the moment but do not be controlled by it.  Feel the anger/irritation/impatience, but do not allow it to take the lead.  Can I do this?  Can I just allow myself to be?  Can I reach out with love instead of anger?  If the answer in this moment is no, then can I just be silent, without turning my anger and frustration inward?  Can I just do nothing at all until this passes?  These things are easy to write about, but so much harder to practice.  And yet I must continue to pick myself up when I fall and practice what does not come naturally or easily because that other road is one I have been down.  I already know where it leads.

For an expanded upon and wonderful post on the mean voice please visit: hereirawr’s Balance Isn’t a Destination and Gray IS Gorgeous!

Road to hell



For those who missed the fun, yesterday was the #AutismPositivity2013 Flashblog where people sent in thoughts about the theme “1,000 Ausome Things” in an effort to counter at least some of the ongoing negativity surrounding autism and those who are autistic.  All the posts have been compiled ‘here‘.  I helped tweet, share, google+ and pinned the posts as they came flooding in and WOW!  It was exhilarating to read so many words written by Autistic people, young and not so young, non-autistic parents, Autistic parents, siblings, cousins, educators and everything in between.  There were bullet points, numerical lists, stories, photos and even a couple of videos!

It was wonderful to see so many coming together over a shared idea.  A moment when the common goal was to rejoice.  A tiny moment when it wasn’t about anything other than what was AUSOME about a neurology we have come to call autism.  And it reminded me of something.  It reminded me of a time in my marriage when a therapist suggested Richard and I make a note every night, not of all that was wrong, or a list of our grievances, but a list of all the other had done right.  A list of all that was ‘good’.  These are subjective words, but we understood the goal was to look for the positive in the other.  And guess what?  It was the single best advice anyone ever gave us!  When we concentrated on that which the other was doing that was kind, took notice of the little gesture made, the loving glance, the dish that was put away, the trip to the store for the milk that no one had remembered to buy, all those little acts each person did, when those were noticed, they added up to something bigger.  They added up to an expression of love neither of us could have voiced.

That’s what yesterday’s Flashblog was about…  love.  Self love, love of another, hundreds of voices expressing love.

This image was created by the very talented Lori Miller Degtiarev of the blog A Quiet Week

Lori Miller Degtiarev


Everything takes practice.  Learning to sit with my fears, takes practice.  Learning to not say something that might be hurtful takes practice.  Learning how to best help my child takes practice.  Learning to disagree with my husband and not do harm takes practice.  Learning to feel compassion for those who harm me takes practice.

Everything I have learned in life, I’ve had to learn over and over.  I seldom get it the first time.  I’m a slow learner.  I know this.  I can admit this without shame.  It all takes practice.


I am never going to do any of this perfectly.  But I will always continue to practice.

Sleeping Muse – Constantin Brancusi 1910

*Sleeping Muse

An Ode To Richard ~ On His Birthday

Richard’s birthday falls on Valentine’s day.  We met on Christmas day at a Christmas party.  I didn’t know many of the people at the party, but parlor games were being played (always a good ice breaker) and Richard, no matter who he was teamed up with, was winning.  I remember seeing him seated on a couch near the window that looked out on to the snow drifts on 8th Avenue.  I remember how intense he was and focused.  He was funny, in a dry, smart kind of way.  He was  one of those people who doesn’t seem to really care about what others think, a bit of a rebel, certainly someone who doesn’t take orders from others.  (Have I mentioned that people say I can be a little “bossy”?  Not that there’s any truth to that mind you.  I just have really good ideas about how things should be done.)  I remember the way he looked at me.  I remember saying to him in front of everyone there, “Are you flirting with me?  I thought you were flirting…”  He grinned at me, with those dimples of his and answered, “Well I was flirting, but I was also asking you a question.”

I can’t remember the question any more.

Right from the beginning ours was not a traditional nor particularly conventional courtship, if you can even call it that.  We went out with groups of friends a few times, always making sure we sat together, always pretty much ignoring everyone else.  We had planned on going to a New Year’s Eve party together, but Richard got the flu, so I went alone.   The next day I received a call from my mother that my father wasn’t well.  I grabbed my wallet, a toothbrush and a pair of underwear, (I’m serious and yes it was a bizarre choice, particularly as I brought nothing else) hailed a cab and caught the first airplane I could get, out west.  Those were the days when you could show up at the airport, without a driver’s license and take a plane where ever you felt like going.  By that night I was at my parent’s house.  Two days later my father died.  Richard and I spent at least an hour every night on the phone.  He held my virtual hand.  He said all the right things, he listened, he talked, I listened.  We talked about death and life and our childhoods and everything in between.  There were lots of tears and emotions.

A week later I returned to New York in love with a man I had spent almost no time with alone.  But I knew the essentials.  I knew he was kind.  I knew he was smart and funny and wise and ambitious and curious and utterly unconventional.  I knew he was a tad quirky.  I knew he had strong opinions, was a bit esoteric, had some weird ideas about aliens and wanted more than anything to see a UFO in his lifetime.  I knew he had a tough childhood and a past that was complicated and I knew we were both in for the ride of a lifetime.  I knew it wasn’t going to necessarily be an easy relationship,  we are both far too feisty, opinionated and sensitive for that, but I knew this was a man who would challenge me and I wanted and needed to be challenged.  That hasn’t changed.

Over the years we have learned to give each other slack, to not pick apart every perceived slight, we have learned to weather our differences, we’ve learned to respect our marriage even when we’re angry with each other and don’t agree.  We’ve learned the art of letting go, not needing to control so much, it’s definitely a work in progress.  We’ve learned a great many things from each other and we keep learning.  We have two beautiful, quirky kids whom we love and adore.  We do not own them.  We do not mistaken our children as extensions of ourselves.  We do not mistaken each other as extensions or expressions of ourselves.  We are a family, a beautifully diverse, vibrant family who respect one another and give each other the space each needs to (hopefully) grow and flourish.  Richard reminds me to “take it down a notch” when I become too fixated on something that is not within my power to change, he encourages me to fight and change the things I can, he is always there for me, supporting me and cheering me on.  He believes in me even when I don’t believe in myself.  He believes in our children with the same dedication and passion.

I can honestly say I love him even more today than when I first fell in love with him on that snowy, wintry Christmas day so long ago now.

Happy Birthday dear Richard!

Richard – then

A young Richard Long

Richard – Now


What Makes You Happy?

Happiness is….

My husband


Our son



A flamingo

Our fabulous kitty

Merlin and the Gator



and this…

the ranch…


7:00 AM in New York City


And this… this one’s for you, Brenda

and this… Angie, love and kisses… (Em took this and it’s pretty blurry, but you get the idea!)


What makes you happy?

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The Best Marital Advice I Was Ever Given and How It Applies to My Daughter

One of the single best pieces of marital/relationship advice I was ever given was:  Every day record all the things your partner did that was kind, helpful, thoughtful, ‘right’.  What are the things you love about this person?  What do you admire about this person?  What do you respect about them?  What are the things they do that make you happy?  What do they do that fills you with joy?  To many, these questions may seem obvious, but try doing this when you’re angry or fearful or even just annoyed.  I remember sitting with my journal that first evening and wondering what the hell was I going to write?  He breathes?  Could that really be seen as a good thing?  (It’s okay to laugh.)  I’m a master at this exercise now.   In fact, I’m so good at it, I now think of the positives FIRST!  And guess what?  My marriage is pretty fabulous, of course it helps that I’m married to such an amazing guy.

The first time anyone asked me about Emma’s assets we were a year or two into the diagnosis.  I thought it was a trick question.  Seriously.  It was my brother Chris, who asked, “What does Emma like to do?  What is she interested in?  What is she good at?”

My mind went completely blank.  No one had asked me these three important questions about my Autistic daughter.  Listing assets does not fit neatly into all those questionnaires I was constantly having to fill out.  Those little booklets with questions broken into categories of age.   Example:  From 3-5 years old:  Your child plays appropriately with toys  The choices were:  Never, Rarely, Sometimes, Usually, Always.   My pencil would hover over the choices as my mind raced.  What does “appropriate” even mean?  Why is pretending a doll is an actual baby, when it clearly is not, considered “appropriate”?   Eventually I resigned myself to the task and considered “Rarely” and “Sometimes”.   Depending on my mood, I would mark one of the two and feel the all too familiar sensation of constriction in my stomach and throat.  Fear flooded my body and mind as I tried to concentrate on the next question:  Your child eats using all utensils.  Again I would resist the urge to fudge the truth.  I had to force myself to choose the answer that came closest to reality.  I came to dread those questionnaires almost as much as reading the evaluation reports sent in once a year from the Board Of Education.  They were both exercises in, so-called, critical thinking – Look at this picture and tell me what’s wrong with it.  Look at this child.  Now let’s compare her to her neurotypical peers.  Let’s make a list of all that’s “wrong” so we can make things “right”.

But wait!  How is this helpful to anyone?  Comparing anyone to anyone else is a lesson in how to live one’s life in hell.  But compare a neuroatypical person to a neurotypical one is absurd.  Why do we even do this?  To what end?  How is this helpful?  Certainly it isn’t helpful to the neuroatypical person.  We do not say to a person who uses a wheelchair, well, you’re not walking and your same age ambulatory peer is, so let’s get you up and out of that chair and try to build those muscles. Then, when you resist or protest, we restrain you, tell you to stop complaining or tell you that you can’t fully comprehend the situation.  When you still do not manage to stand, let alone walk, we shake our heads sadly and tell you, you really need to have a better attitude and try harder, but don’t worry, it’s okay, we’ll keep working on it.

What does this thinking do to a person over the long-term?  If we are judged, compared, relentlessly criticized, taught that we fall short, told we don’t measure up, dissected publicly, privately and shunned, what does that do to us?  What would that do to any of us?  We are, after all, regardless of our neurology, human beings.  We do all share that.  Has the human piece gotten lost in all of this?

What does she like?  What’s she good at?  What is she interested in?

I’ll have to get a bigger pad of paper.

Em at Gymnastics – October, 2012

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From Storm Clouds to Sunshine

Yesterday was one of those days when everything felt harder, everyone seemed grumpy, everything seemed to go wrong.  Yesterday felt like this:

By the time I got home I didn’t even try to conceal my irritability.  “You okay?” Richard asked when he saw me walk in.  “Just feeling out of sorts.”  Richard nodded his head.

I stayed away from everyone, tried to keep my interactions to a minimum lest I take my grumpiness out on my family.  After an hour or so I could feel my mood lifting.  Richard and I had the following conversation.

Me:  Standing in doorway  Hey honey?

Richard:  deeply engrossed in writing  Uh-huh?

Me:  What do you think about having some down time, you know, just you and me?

Richard:  still writing  Yeah.  That sounds good.

Me:   Still standing in doorway   Um.  Yeah.  Like, you know.  Just the two of us.

Richard:  Looking up from the computer.  Yeah.  Okay. 

Me:  Continuing to stand in the doorway

Richard:  Yeah  Big grin.  I’d like that.

Me:  Reaching for “Autism is a World” DVD   Great!  Cause I’ve got this autism video I’ve been wanting to watch with you…  Waves video in the air.

Richard:  confused look, trying to assess whether I’m being serious.  He knows me and knows this is just the sort of thing I might suggest, though the previous dialogue suggests otherwise.   So he’s trying to figure it out.  I can see him going through the mental gymnastics.  

Me:  Laughing

Richard:  Look of relief.  

Me:  Does a little dance.

Richard:  Glad you’re feeling better.

Fade to black

*As my friend Ib would say – on a lateral side note – I am off to the UN today for The Fifth Conference of State Parties to the Convention on the Rights of People With Disabilities moderated by Juan Carlos Brandt, Chief, Advocacy and Special Events, Department of Public Information, United Nations.  I intend to speak up about the need for including Autistic voices (emphasis on the plural) at any and ALL meetings such as this one.  Wish me luck.  It’s a beautiful day!

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Sleepovers, Staycations, Sixteen Hours & Other Words Beginning With the Letter “S”

Emma’s having a sleepover!

Yesterday I wrote here about how Emma has been asking for several months to have a sleepover at my cousin’s house.  This began after they invited Nic to come stay with them.  It has become painfully clear that  Emma, though she said nothing at the time, wanted to go too.  However, arranging this is impossible.  They are a couple in their 70’s and while I adore them and am close to them, I cannot ask them to have her.   They do not know her well, Emma’s language is limited, her routines plentiful, I would need to accompany her, which would be awkward.  So no, that’s not going to happen.

After I wrote yesterday’s post, I received a wonderfully thoughtful email from Emma’s therapist, Joe, suggesting she come for a sleepover at his and his gorgeous wife’s house along with his wife’s god daughter, who came to Emma’s ninth birthday party, this weekend.  Nic will be at the beach with his friend.  Emma will be with Joe and Angelica.  Which means….  drum roll please… Richard and I will have about sixteen hours to be together, just the two of us.   Sixteen hours.

Woohoo!  Oh yeah, baby! (Insert little snoopy like dance of pure, unadulterated ecstasy, here.)  Other than our ‘Staycation‘ in February, also thanks to Joe, Richard and I do not get a great deal of “just the two of us” time.  Don’t misunderstand, I’m not complaining, it’s just a fact of our lives, making Emma’s impending sleepover all the more fabulous.  It must be noted that Joe is contributing to the continued well-being of my marriage, in addition to providing Emma with her desire for a sleepover.

So last night after confirming that this was indeed happening, I went to find Emma.  “Hey Em!  Guess what?”  Silence.  “Do you want to have a sleepover with Joe and Angelica this weekend?”


“Do you remember Madison?”  Emma nods her head yes.  “Madison will be there too!  Do you want to go?”


Later Emma came to me and put her hand on my shoulder.  “Go to Angelica’s house for sleepover?”

“Yes, this weekend.  Are you excited?”

“Yeah!  I’m excited.  Go to Angelica’s house with Madison, Oliver and Trovel.  Go sleep in Central Park.”

If you are as baffled as I am by this, then welcome to my confusion.  I have no idea who Oliver and Trovel are, why they are sleeping in Central Park, of all unlikely places or why Emma thinks it’s a good idea to join them.  How Angelica is involved in this is also a mystery.  As I sat looking at her and trying to figure out which question I should ask first I decided to tackle the name Trovel.  “Do you mean Trevor?”

“Trouble,”  Emma said, carefully articulating the word as one might to a very small child or a foreigner.   “Oliver and Trouble,” Emma added.  She waited staring meaningfully at me.

“Okay.  Who are Oliver and Trouble?”

The look on her face was the equivalent to Nic’s disgusted and embarrassed shrug and eye roll combo. “Have sleepover with Oliver and Trouble.  Going to sleep in Central Park.”

After a number of questions I came up empty.  Finally I said, “But Em, don’t you want to have a sleepover this weekend with Joe?”

“Yes!  Sleepover at Angelica’s house!  I’m so excited!”  Emma grinned at me and then turned on a YouTube video of some arbitrary family’s home movie of themselves riding the Central Park carousel.  It’s one of Emma’s favorite videos and whenever she watches it I wonder what this family would think if they knew they’ve provided hours of entertainment for my daughter by posting to the public their slightly weird video.  I say slightly weird because the man, I’m assuming the father, looks into the camera and discusses at great length which horse he plans to ride.  Emma loves it.

Sixteen, stupendous, spectacular hours, people!

I couldn’t find a photo of roses to go with the caption – Things are coming up roses.  This photo taken in Central Park of tulips will have to do.  Things are coming up tulips! 

My latest piece My Fear Toolkit published in the Huffington Post

A Staycation

For Richard’s birthday, Joe offered to take both children snow-tubing and to an indoor water park for three days and two nights over President’s Day weekend.  Both Richard and I leapt at his offer.  Don’t misunderstand, we love, love, love our children.  But it’s really nice to have a couple of days and nights off.  Richard and I haven’t spent time, just the two of us together, for several years.  That was not a typo.  YEARS.  And never before have we stayed home without one or both children here with us.  When I told my cousin about Joe taking the children and how excited we were, she said, “Oh you’re having a staycation!”

The kids and Joe left yesterday.

I cannot describe how incredible it is to have the comfort of our home with only Richard and me (and our cat, Merlin) here in it.  For one thing it is very, very quiet.    And for another we can come and go as we please without booking caregivers, worrying about being home at specific hours; it’s hard to believe a large portion of the population lives this way on a daily basis.  I can’t imagine!  So yesterday Richard and I went up to MAD (Museum of Art and Design) leisurely strolled through the exhibits, even wandered up to the sixth floor to the Open Studios, where we met the artist, Fergus Walsh, a puppeteer at work on one of his wonderfully expressive clay looking creatures with funny eye balls.  Then we made our way downstairs to the Beauty in All Things:  Japanese in Art and Design show, where I saw this Bronze Vessel by Iwata Kiyomi, made of metal cloth, composite, gold leaf, silk organza and acrylic paint.

Never once did one of us say with an edge of panic, even though she was right next to us, “Where’s Emma?”  or “I think the kids have had enough, we better get going.”  We took our time, pausing at things we found particularly compelling, like the moving Japanese screens depicting the changing seasons.

Later we went to see a silly movie about two hired assassins who fall in love with the same girl, unbeknownst to her.  By the time we left the movie it was dark. We walked over to a little restaurant in the Flat Iron District we like, Basta Pasta, a Japanese take on Italian food packed with an eclectic crowd of people from all over the world.  We didn’t worry about rushing home to relieve the baby sitter.  We didn’t bother looking at the time.  Though at one point I did say to Richard, “after dinner I think I’ll text Joe and just check in.”  But just as I said that, Joe sent me an email saying both kids were exhausted and asleep having had a great day snow-tubing and swimming.

By the time we returned home we marveled at how quiet the house was.  We discussed what we would do the next day before turning off our reading lights.

“I’m glad to have this time together, just the two of us,” I said in the dark.

“Me too,” Richard said.

“I’m glad the kids will be back Tuesday night.”

“Me too.”

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

Service Dogs and Marriage

There’s a terrific story in the New York Times about service dogs for people and children with disabilities.  (This post is also about marriage, bear with me. I know it’s a little convoluted.)  The article begins with a couple, who in 1999 adopted two babies from Russia, only to realize after a few years that their son was not developing in the same way as their adopted daughter.  After much distress and many specialists, a developmental pediatrician diagnosed the child with fetal alcohol spectrum disorder.  As the child’s behavior became more problematic and as he grew bigger and stronger, the family’s concerns grew too.  The mother heard about an agency providing children with disabilities service dogs and so she brought this up to her husband, whose initial response was negative.  Over time he came around, they got a service dog, the boy bonded with it, the family was able to sleep through the night without disruption from their son; it’s a wonderful story full of hope for those with disabilities and their families.

As I read the article I had the following thought process:  We need to get a service dog for Emma!  (Forget that she is terrified of dogs.)  If we got a service dog for Emma, she would get over her fear of dogs, which would lead to her finding this particular dog calming, (forget that she’s not an out-of-control child to begin with) and the dog would help her sleep longer on the weekends.  (Forget that we live in New York City and the dog would need to be taken out first thing in the morning.)  Because he would help her sleep past 6:00AM on the weekends, we would also be able to and wouldn’t that be lovely?  (See above parentheses.)  I will not bore you with the details of my continued thinking, anyone with even a passing familiarity with the – If You Gave A Mouse A Cookie – series will know how convoluted the mind can get, if one encourages it.  Suffice it to say, I went from service dog for Emma, to thinking about our adored cat, Merlin, whom Emma ignores, to a meditation on how fortunate I am to have such a sensible and loving husband (who would be completely against this whole idea and he would be right).

Which brings me back to marriage.  I am in no way an authority on marriage, what I can say about it, is to state the obvious – It’s helpful to marry someone you really admire and like.  Adoration is helpful too.  Richard and I joke that it took us about ten years to muscle our way into a good, strong marriage, but thankfully we both kept showing up.  This is where a healthy dose of determination and tenacity can work in ones favor.  Neither of us are particularly good at giving up, in fact, we both tend to stick with something long after we probably should have let it go.  But in our marriage sticking with it has proven advantageous.  It doesn’t hurt that I adore, like, love AND admire the man, even when he’s grumpy.  Even when he doesn’t agree with me.  Even when he shoots down my wonderfully creative ideas – such as getting Emma a service dog – (an idea I haven’t actually verbalized, but know he would not want to discuss) I still love him.  I know somewhere in the dark recesses of my mind that even if he’s not right, he has a point.  A point, that with time, I might be able to come around to, at least, hearing.

It helps that I married an almost perfect man of course.  I know.  I’m very, very lucky.

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

This morning Emma wore her new shoes to school

Lucid Dreaming

Richard spent (he claims it was just half an hour, but I swear it was a lot longer than that) last night talking to me about lucid dreaming.  When he had finished reading choice chapters from one of the many books he is currently reading on the subject, he moved to the copious notes he’s taken.  When it was all over, after I had learned that certain molecules along with serotonin are released producing a “dream state,” after he had finished hypothesizing how Emma’s “autism” seems somewhat similar to the dream state he’s been reading about, one in which our senses are jumbled and different than in our “waking” state, after he had finished telling me about his own theories, questions, thoughts and opinions, he said, “What do you think?”

My brain, a jumbled mess of information, bursting with an overflow of information ranging from the physical to the metaphysical to quantum physics to quantum mechanics was in no state to produce meaningful additions to the topic at hand.  Science was never a subject that captivated me, unlike my mother and two of my brothers – one’s a physicist, the other a bio-chemist.  Clearly the science genes were used up on them and by the time I came along there just weren’t any left.  Never-the-less, I did my best to formulate some kind of not-too-ridiculous-comments, which I only prayed related to all that he’d been talking about.  As I did this, I looked over at him and felt overwhelmed.  Not by the subject matter, though I admit, I did feel a bit overwhelmed by that too, but I am referring to the feeling I felt.  It was the same way I felt when I first met Richard.  It was as though I was falling in love all over again.  Not that I had fallen out of love, more like just falling deeper or maybe it’s more accurate to say I felt myself aware that I continue to fall, that I’ve never really hit the bottom, there’s not been a stopping, that it’s a continuous falling in love that doesn’t end.  There was something about the look on his face, a certain intensity, his brain whirling around with all of this information, his trying to make sense of our Emma, the studying, the research, his ability to see things differently, his way of being in this world, yet always searching for other ways to view it…

I love that man.

No one could have told me that when we had our two children, I would end up loving my husband more than I already did.  No one could have described to me the feeling of gratitude I would feel on a daily basis toward this man who has been as actively involved in child-rearing as I have.  No one could have told me any of that.

And if they had, I wouldn’t have believed them.

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


Eleven years ago, Richard and I were married.  As usual we were a bit unconventional in the way we met, dated, had our first child, then lived together and finally were married.  We were married in a beautiful, old, though dilapidated, building in New York City, which also happens to be the oldest  synagogue in New York City.  (Neither of us are jewish, the building is no longer used for religious purposes, but instead is rented out for performances, parties, Spike Lee filmed a music video in it and other events.)  The day we were married, New York City was in a blizzard.  The black limo we’d ordered never arrived.  Meanwhile Richard had gone ahead with most of the other wedding party.  I was with Nic and my sister, on the phone, yelling at the car company, demanding they send a car, any car to take us downtown.  When the car finally arrived, they’d sent a white, stretch limo.   I remember I turned to my sister and said, “I feel like I’m going to a prom.”

“Let’s just go,” she pleaded with me.

We were over an hour late.  When we arrived Richard said, with his usual dry sense of humor, “I was wondering if you were going to show up.”  As my mother’s cousin, Peter led me down the aisle I kept my eyes on Richard, so handsome in his tuxedo and mouthed, I love you.  My entire family were there, Nic, then nine months old and wearing a little velvet tuxedo was in the first row.  Emma would be conceived in another few months.  We had no idea of the events that would unfold in the coming years.  We couldn’t know the feeling of unadulterated joy at the birth of our daughter, Emma, just two years later or our pride in watching our son, Nic play his Alto Saxophone in the winter concert at his school, just a few weeks ago.   All those moments, millions of moments when events played themselves out.

It was 15 below zero and the basement of the building where we had a quartet set up to play after the ceremonies, played with their down coats on and fingerless gloves.  You could literally see your breath it was so cold, still even in the freezing cold, it was beautiful.  Richard reminded me to stop every twenty minutes or so to just take it all in, because this night, this moment would all be gone, before we knew it.

Eleven years later, Richard still has to remind me to stop and breathe, enjoy the moment because it is all so fleeting.  But I do, we do.   We have a good life: two beautiful children, a wonderful extended family, dear friends, a good, strong marriage, our love for one another and this moment.

Our wedding – December 22, 2000

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

What They Don’t Tell You

Here are some things you will not find in your research on autism:

You will not learn how this diagnosis will affect your marriage or other members of your family.  You will not be told how it may fundamentally alter your perceptions of what is “normal”, how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with autism may cause you to feel things you never dreamed possible.  You may know moments of joy and moments of despair you could not have imagined.  You may find yourself going to untold lengths in the hope of helping your child.  You may feel distracted, unable to concentrate.  Your work and career may suffer.  You may learn what it is to be sleep deprived.  You will come to know what it means to feel desperation.  You will know sorrow in a way no one can prepare you for.  You will know happiness in a way no one can prepare you for.  Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it.  You may contemplate doing things you would have scoffed at before your child was diagnosed.  You may find yourself doing things that defy logic and have no medical basis.  You may listen to implausible, anecdotal stories and think – we will try that next.  You may dream your child is speaking to you in complex, beautifully self aware and revealing sentences.  You may wake from those dreams believing for a few seconds they were real and not a dream.  You will pray that you might dream again.  You will welcome sleep, as you never believed possible.  You may ache with sadness because your child is crying and in pain and your presence brings them no solace.  You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted.  You may feel the exquisite joy from having your child reach for you, ask for you, call for you.  You may know the joy that comes with seeing your child work so hard at something that does not come easily to them.  You may celebrate when they use the correct pronoun, even though they are no longer a toddler, when they learn to get dressed on their own, drink from a cup, say hello to you without being asked or simply acknowledge your presence.  You may feel a gratitude you would not have believed possible.  You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is.  You will know what it is to appreciate commonplace things – eye contact, the correct use of the words “me”, “you” and “I”, physical contact initiated by your child, a word, any word spoken.

You will feel a fierce love for your child that seems to come from a place that is not of this world.  You will know what it is to love unconditionally and you will understand what that really means.

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

An Overview

On autism.com‘s web site, they write:

“What is the Outlook? Age at intervention has a direct impact on outcome–typically, the earlier a child is treated, the better the prognosis will be. In recent years there has been a marked increase in the percentage of children who can attend school in a typical classroom and live semi-independently in community settings. However, the majority of autistic persons remain impaired in their ability to communicate and socialize.”

After receiving an autism diagnosis for one’s child, most people go to the internet to learn more.  Quotes like this one abound.  What these sites do not say, cannot say, is what will specifically help your child –  What interventions, if any, will make a difference, what biomedical, dietary & behavioral approaches will work?

This quote is also from autism.com’s website:

Conclusion Autism is a very complex disorder; and the needs of these individuals vary greatly. After 50 years of research, traditional and contemporary approaches are enabling us to understand and treat these individuals. It is also important to mention that parents and professionals are beginning to realize that the symptoms of autism are treatable–there are many interventions that can make a significant difference.

The logo for the national parent support group, the Autism Society of America, is a picture of a child embedded in a puzzle. Most of the pieces of the puzzle are on the table, but we are still trying to figure out how they fit together. We must also keep in mind that these pieces may fit several different puzzles.”

A parent of a child with autism quickly finds they will need to read enormous amounts, speak with a great many “specialists”, sift through the endless opinions (often stated as fact), and try to make sense of all the various articles, papers, news items and books currently in print on autism.  In addition they may watch the numerous documentaries, interviews, YouTube clips and all the other visual forms that exist relating to autism.  Having done all of that a parent must make decisions as to what they can and cannot do, what they can and cannot afford to do in their attempts to help their child.  While they are making these decisions, they must cope with their own emotions, trying hard to keep depression, worry, panic, fear, sadness and guilt at bay.  They must learn to manage these feelings while continuing to research and do what they are able to with the hope something they try might just help their child.

But most important perhaps, we must never give up.  We must try in our darkest hour to see the light.  We must treasure our child’s differences, celebrate our child’s uniqueness, rejoice in our child’s strengths.

Years ago Richard and I went to a couple’s therapist.  He listened to us both individually and then asked us to meet with him together.  As we sat side by side on his couch he told us he didn’t want to hear about our latest disagreement, he was much more interested in hearing from each of us what the other had done right in the last 24 hours.  We were told to go home and keep a journal, recording all the things the other had done that was kind, thoughtful and helpful.  He encouraged us to examine each act, to consider things we perhaps took for granted.  It was the single most helpful advice anyone ever gave us.

This blog is a version of that exercise.  While I do my best to accurately document Emma’s progress or lack of, while continuing to try different interventions, I also try my best to celebrate her.  Let me concentrate on her strengths while I continue to do everything in my power to help her build on those same strengths and perhaps she’ll discover new ones.

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