Category Archives: Marriage

Posts about the impact of Emma’s autism on Richard and Ariane’s marriage.

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

 

Love

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

Practice

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.

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

*Richard

Confessions From a Literal Mind

My husband is funny.  Just had to say that.  He’s a funny guy and sometimes he’s funny without meaning to be, which throws him out of funny territory and plops him directly into the hilarious camp.  Some people are like that.  Thankfully, my two kids are also funny/hilarious so there’s a great deal of laughter in our home.  Until my husband or son tells a joke.  Me and Em don’t do the joke thing, mostly because Em is more into making faces and physical comedy and I don’t “get” most jokes (I’m told this is because I tend toward literal-mindedness) and even when I do, I usually do not think they’re funny, which makes others insist that I haven’t “gotten” the joke, because, the thinking goes, if I did, I’d laugh with everyone else.  I disagree and maintain that it’s a bad joke, but this argument never goes over well, particularly to the joke teller, who’s convinced the joke they’re telling is, by the very fact that they’re telling it, hilarious.  Even if it isn’t. And it isn’t.  Trust me.

Case in point, and this is one of Richard’s favorite jokes, whenever we travel.

Random person:  “How are you?”

Richard:  “We just flew in from New York…” Beat “and boy are my arms tired.”

Me:  expressionless face.  

Richard:  Looks over at me, sees expressionless face and says, “Ba-doom, boom!”

Random person:  Doubled over with laughter, “Oh boy I haven’t heard that one in a while.”

Me:  Look of confusion.  “Wait, what?”  Watches laughing husband and random person.  “What’s the punch line?”

Random person and husband:  As though choreographed, swivel their heads to face me, look at each other, then burst into peels of renewed laughter.

Me:  View of my back as I walk away…  Sometimes I’ll shake my head in an exaggerated display of my (feigned) contempt.

So I have a confession, because… well why not confess these things (?) I’ve nothing to hide…  I do “get” the joke, intellectually, I understand the play on words, I just don’t feel anything remotely like laughter surging through my body because of those words and truthfully, that joke, in my opinion, as well as most others like it are “made” funny with a straight man.  So I, being the thoughtful and generous soul that I am, feel obligated to provide this.

You’re welcome.  *Big grin*

Signed:  “Straight man” aka Ariane

Laura B., Barb P., Emma (ever the performer) and Me (trying hard to keep a straight face)

2GroupShot

What Makes You Happy?

Happiness is….

My husband

*Richard

Our son

Nic

Em

A flamingo

Our fabulous kitty

Merlin and the Gator

This…

Nicw:dogs

and this…

Emonherpogostick
the ranch…

6AM

7:00 AM in New York City

AMin NYC

And this… this one’s for you, Brenda

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

kisses

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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A Call To Action – “Wake Up The Boys And Grab The Plunger”

6:22AM -   “Honey, I’m hopping  into the shower.  And I mean that literally,” I announced.

“Time to wake up the boys and grab the plunger,”  Richard replied.

“You’re a funny man,”  I said, laughing.  “God I love our life.”

“It’s a good one,” Richard grinned.

A little back story:

Our bedroom is like Grand Central Station.  Allow me to explain and for the record – no, it is not because we’re running some sort of upscale brothel.   Our bedroom is the first place both the children want to be when entering our home.  Is anyone thinking, these people clearly need boundaries?  Well for those who are, you have a valid point.  I don’t agree with it, but it’s valid and for those who were not thinking it, I’ve probably planted that little seed into your minds and NOW you are at least considering the idea.  To you I say… whatever, eye roll and shrug before walking away.  But I digress…

Our children are drawn to our bedroom like bees to the hive.  It’s like some  kind of  vortex, a siren song calling to them.  A place that instills comfort, a feeling of safety and serenity, like a soft, sensual womb.  Or maybe it’s the really big TV screen that calls to Nic and our king sized bed with silky sheets that beckons to Emma, it’s hard to say and I haven’t done a scientific study (pause)  yet.  As a result our bed is in a constant state of unmade disarray, rumpled sheets, pillows abandoned on the floor, mattress askew.  Richard, who, it has to be said, is just a tad compulsive – cough, cough, totally OCD, cough - about the bed being made each morning, is driven to distraction by this state of affairs.  We make our bed at least four times throughout the day.  Richard is rolling his eyes and muttering – What’s she talking about “we”?  I’m the one who’s making it all the time, not her.   But why quibble about the details?  All of that is beside the point.

It is not just our bedroom that draws the occupants of our house, it is our bathroom as well.  We have three bathrooms and yet, the children prefer ours.  Again, I have no answers.  So it is not unusual for Richard and I, as happened last night, to come home from our “date night” to find our toilet clogged.  To be blunt, both our children are cloggers, ‘nuf said.   I’m German, or at least part German and could go on and on about this, but the Swiss part of me is calling for a little restraint, so I will.  Restrain.  Myself.

Because we are busy and somewhat disorganized, we have not gotten it together to purchase more than one plunger for the house.  And last night that one, coveted plunger was not in our bathroom.   Not wanting to risk waking either child to locate said plunger, we opted to leave the toilet seat down and figure it out in the morning.  I know, this is bordering on TMI (too much information).  What?  I’ve already entered into the TMI zone?  Okay, well again, whatever… All of this is in explanation for Richard’s call to action, “Wake up the boys and grab the plunger!”  Personally, I think it’s an excellent way to start the morning. I intend to repeat this, completely out of context, in the coming weeks and months, because, well that’s the way I roll.

As a quick aside,  Emma will be singing in her end of the year performance at her school this morning.  I cannot wait!

Emma took this photograph of our bedroom two days ago.  Can we all appreciate the symmetry, the angle, the lighting…

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?”

“YEAH!”

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

“YEAH!”

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