Love After The Storm.

Dear Electricity,
While you were away I had a lot of time to think. And now that you’re back, well… the thing is… I love you.

It might sound hokey and you’re probably thinking, “You say that to all the forces of nature after an ice storm.” But baby, I’m serious.

I know I haven’t appreciated you for all the little things you do, like running my dishwasher and lighting my front porch– and the night lights! man how I love those little things….

But I promise to pay more attention to you, and to be more grateful and not overwork you or curse at you if you run up my credit cards at PECO buying new currents or transistors or whatever you girls are into these days…

Hey wait, come back, that was a bad joke, sweetie, don’t be mad.

Anyhow, I know we’ve been on and off for a while. But I’m ready to take our relationship to a whole new level…I want you to stay. Permanently. Please tell me you’ll stay.

Love,
Cathy

My pigs LOVE to sing!

Do kids with autism feel empathy? 

Are empathy and compassion something we have to teach them? 

This subject is fodder for heated debate among parents and professionals and educators right? 

Get over yourselves, people!  Kids with autism already have empathy.  It’s just that we’re looking at it (and at them) the wrong way.

Recently one of my very brilliant writer friends, Jill — (may I call you friend?  because that would be an honor since you’re one of the freakin’ funniest, smartest mom bloggers on the internet) — directed my attention to an article written by a doctor about the TV show “Parenthood” and the ability (or inability, as he saw it) of people with autism to empathize with others.  His quote:

“Trying to teach a person with autism to empathize is like trying to teach a pig to sing– it wastes your time and it annoys the pig.”

was what began a whole hullaballoo of angry, outraged comments from parents like me about our children and this idiot doctor and how dare someone say…. etc. etc.

First off, let me just tell you that I personally love the “never try to teach a pig to sing” quote.  My Dad found it when I was a teenager and loved it so much I think he has a placard somewhere on his desk saying just that.  He thought it was funny because he could picture this very annoyed pig …

(…. although, come to think of it… how exactly can you tell by a pig’s expression that they are annoyed? … but more on that later)

this pig who was having none of someone’s well-meaning choral instruction.  He used to quote it in a mock serious tone whenever someone in our family would encounter a ridiculous situation that could have been upsetting.  That quote and my Mom’s line:

“There you go, trying to use logic again…”

in the same circumstances make me crack up every time.  So poo on you, Dr. Author of this ridiculous article for using what is in fact an awesome quote in pursuit of your illogical argument!

But I digress…

So what’s really wrong with this article and the ideas we have about autism and empathy?

The fact —

(and yes I will state it that way because I’m the Mom, that’s why– see my six-word memoir)

— is that kids and adults with autism already have empathy. 

What well-meaning educators are trying to “teach” is how to translate their words and actions for the rest of society who remain too close-minded to see the depths of empathy and compassion that already exist in each person. 

Come on folks, open your minds.  Everyone expresses things differently.  When are we gonna realize this?  What do you think people with autism are capable of?  Do you think they’re intelligent?  If you have children on the autism spectrum or if you love or work with folks on the spectrum, I’m betting that question just made you sit up a little straighter in your chair and say, “Of course I do!”  Well exactly how intelligent are they?  How capable?  Who falls into what category?  And how do  you know that’s true?

Have you watched “Wretches and Jabberers” yet?  Come on, people, it’s on Netflix now for crying out loud!  This is important stuff!

As you watch the men in that movie travel across the world educating people about autism and intelligence, ask yourself what changes for you when you see their ultra-stimmy behavior and the things they struggle with.  What are you really thinking when you watch (and hear) the words they type to communicate?  Did you expect their language, the thoughts they project to be so poetic?

Is there natural empathy there?  Or did they learn it?

Pay close attention to what the characters in “Wretches and Jabberers” say about their own experiences growing up.  Look and listen *between the words* for what they are able to communicate to the rest of the world, what they wish for, and what still gets stuck while they are “living in a body they don’t have complete control over.”

As I read through the article Jill posted, and as I perused the comments, I thought about how much I fight to get the rest of the world to understand my children.  I just wrote a whole post about advocacy and I am proud to advocate in the best way I know for my family for the rest of my life.  But I also thought:

“I’m tired of trying to get the rest of the world to understand something so basic as who is my son and what is his true potential.”

The fact is that no one–

none of us reading, none of the self-proclaimed experts who write articles like the Dr. Singing Pig guy, none of the most well-meaning and loving people in our lives–

can ever truly know another’s potential or what is going on inside them.  We have to take a leap of faith.

How do I know that children with autism feel empathy?

Because I don’t look for signs of it in the ways that everyone else does.  I see it in the way Alex leans on me even when he doesn’t want to be hugged.  I see it in the way he responds to other children struggling or expressing what he concludes is pain (screaming or crying or subtle ways of acting out).  I see it in the way the kids at the residential treatment facility interact with me differently because they know I don’t judge them or make assumptions about them.  I see it in the spaces in between every other interaction.  It is so obvious to me that I really have trouble understanding why everyone in this whole world isn’t able to pick up on it.  It annoys me more than anything else and frankly, I’m tired of screaming about it.

My response to the comments on the “Parenthood” and empathy article:

“Yes.  Exactly.  My pigs LOVE to sing… “

If you don’t believe me, open your mind to the possibilities, assume the things that society tells you are “missing” in a person with autism are really there, only they may not be expressed in ways you expect or easily understand.

Then when you find

empathy,

compassion,

capability, intelligence,

humor, talent,

desire and resiliency,

go tell the rest of the world to stop trying to educate and change the pigs and just listen to them sing.

“Be Like Buddy” launches this week!!

I’m going to keep this short & sweet.  Once upon a time in the land of autism families there lived a Dad.  An ordinary Dad, who was married to an ordinary Mom, who had an ordinary… well, not so ordinary Son.  When he discovered his son wasn’t living in the land of the typical but was going to lead his family in a new direction because he had Autism, this Dad did something extraordinary.  He put his desire to give his son the chance to experience the world in the most full, real way possible ahead of his regular Dad worries.  And he created “Be Like Buddy.”

One video, one skill, five minutes.  These are new, but they are already making big changes in the lives of ordinary families with extraordinary children.  And you can get yours for free at the online launch party this Thursday and Friday.  There will be tons of free stuff on the “Be Like Buddy” website (you can learn more on their facebook page or by following them on Twitter, too!)

Being an ordinary Mom myself, I know how many “new things with possibility” float by our desktops & kitchen counters every day.  Yeah, it’s a lot, it’s true.  But trust me– “Be Like Buddy” is one of those things you’ll want to have and share.  Please help me spread the word and tell your ABA therapists and teachers and family members about “Be Like Buddy.”  Then come to the online launch party and get the videos for yourself!

angry words and the mountain.

angry words and sharp comments

confusion, escalation, debate

misunderstanding stings

I feel shaken,

whipped around by the tones in your voice

 

heart racing and leaping

grasping at words as they fall away

down the sides of the mountain

that sprung up between us

it’s all wrong, my words twisted & thrown

… not what I meant, not what I mean…

 

frantic I try to put thoughts back together

and find my way back to the core

 

voices quieter now.

tears and a nod

a hug but it’s hollow

and panic is lingering

lonely and lonelier still…

there’s nothing to do but let the tears come

and stare out the window

watching the sky

 

… please help me come back …

…are you there? … are you gone?

 

it’s crushing, fast breaths

grief floods the insides

words scroll through my mind,

and I realize …

I’m talking out loud to myself

 

I try & I cry & I’m hopeless at this

fumbling, throwing out thoughts

nothing helps …

but I pound my fists on this mountain

as I cry & I try

desperate to find you again

 

the words lay in heaps on the ground where I sit

and the mountain looms large in the fore

I miss you, I’m broken

but finally listening…

I can find my way back to you now

 

I return with hands open, with words set aside

to hear your heart beat and your breath

my fingers tangle your hair, I let go and I soften

to feel the end of the journey apart

 

my back to the mountain

I breathe slowly once more

and give thanks that the climb didn’t break us

we found our way through, can we always do that?

I am grateful to simply be here.

A Lemon for my Water

Sometimes it’s the simplest things that make the most difference.  I’ve been trying to drink more water and the thought occurred to me our filtered office water might taste fresher with some lemon juice.  So I walked past my favorite coffee shop on the way back to my desk and asked for a lemon.  My girl Kristin over there, who’s always quick with a joke and a sly teasing comment about how high maintenance I can be, handed over a perfectly wrapped little lemon slice and said, “Hey that’s wrapped gold right there!” with a wink.  It was perfect.

To know and be known.  I think that’s what everyone really wants in life.  For people around to notice you, to consider you with kindness, to genuinely care.  I’m aware that I can be high maintenance and very particular when it comes to important issues, but really the things that make me most happy are so little.  A slice of lemon is truly gold to me today.

I’ve been thinking a lot about why it means so much to me to be known lately.  Perhaps it has to do with the space my mother’s death left in my life.  She certainly knew me better than just about anyone else, yet I often felt a tug-of-war for her attention.  She was busy and involved, running around experiencing life, traveling, doing good out there in the big world.  Sometimes I felt I had to jump up and down to get her to slow down and take notice of me.  And when she did, it meant everything.  Like the time she scolded me about parking in the neighbor’s space and I threw a little fit and left to run an errand.  When I came back, I was still tense and cranky, but trying to let the feeling go.  Mom hugged me immediately—she didn’t even wait until I put the groceries down—and said, “I know the parking space isn’t most important, the most important thing is we are here together.”  My crankiness melted away.  She knew me.

In everyday life, maybe it’s not just about feeling known, but also about my own perceptions of the quirky little things that come naturally to me.  If I see someone wearing earrings I like, I’ll comment on them and tell her so.  If I have questions about a product or service, I’ll ask.  If someone offers to help and I need it, I’ll try to let them know what would be most helpful in that moment—because I take for granted the fact that people are basically good and most folks aren’t apathetic, they actually want to know how to get involved.  I certainly don’t think I’m alone in what I notice or what I need and want, but I may be in the minority when it comes to the ability to open my mouth and comment, ask, or talk about elephants in the room.

Another one of my coffee shop friends, Amanda, made me an amazing cup of Hawaiian Coconut coffee this morning with just the right amount of soymilk and Splenda, exactly how I like.  I thanked her and commented on how good it feels to be known to someone else.  As she carefully pressed a white coffee cup lid onto my favorite ceramic mug from home, she replied that all her life she has wanted to be a “regular” at a local coffee shop and be able to walk in and have someone know just what to serve her.

And you know what?  For the rest of the day, I’ll be thinking about that and wondering what small part I might be able to play in giving her that feeling for just a minute.  Because sometimes that little “slice of gold” just means everything.

the ride.

I just wanna be the mom.

Alex’s head rests on my shoulder in the waiting room, my arm across the back of his chair.  He lets me kiss his hair.  He doesn’t feel good.  I know, his father knows.  We need someone to explain why.

Another puzzle.  His belly, his behavior.  Specialists.  A second appointment.  “You do know your child best.”  Consult, consult, re-evaluate, adjust.

The weight of Alex’s body against mine grounds me because I know he is seeking comfort and he finds it in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I just wanna be the mom, the one to stroke his hair and bring him soup.  To talk softly or read books.  To let him rest on my lap.

But so much of the time that’s not how it seems to go.  Parents lead teams, fight for justice, find answers, forge new paths…. don’t we?

< sigh >

I am just the mom.  Maybe I’m supposed to feel as if I’m on a horse charging through the forest, riding on to victory!  Wind in my hair, a confident counterpart to a powerful animal leaping obstacles.  Adrenaline rush and excitement at conquering the challenge!

But no, my reality feels more like the Teacup Ride at the amusement park.  Tinny carnival music slightly off key, clanking of safety locks & bars, the whir of start up after a half-hearted warning about risks & keep-your-hands-and-feet-inside-the-car by a lazy, monotone, uninterested attendant.  Then the exhilarating feeling of leaning to the right to be abruptly yanked to the left into an endless circle.  Sliding along the seat, bumping into your cup-mates, grabbing the wheel in the middle to stay stable– and wondering who else might turn it at full force to make your stomach flip flop as you fly around again at nauseating speed.

If you resist the momentum or try to focus on real life beyond the ride, you feel sick.  If you yield to the movement, you find a fleeting thrill– maybe even a joyous freedom.  Then it ends too soon and you’re back to the hot, crowded line to wait for another try.  It’s the resistance that causes pain.  And whether you ride without resistance or not, you’re likely to make yourself sick anyway.

I just wanna be the mom.

I hold my breath and attempt a calm smile, an even tone, picturing a ballroom dancer in a flowing dress being led by her partner around the dance floor, poised gracefully to be turned and dipped and spun at will.  Giving the illusion of control and strength, able to dance without falling, to step without causing pain, to perform a role.

“Yes, we have the information you requested.  Could you please tell us when we might be seen?”

All the while, my mind seeks answers, spinning like a tea cup, trying to focus, feeling confused and frustrated, wondering why this all can seem so hard.

I just wanna be the mom.  I was born to be the mom.  Not the spinning performer, the equestrian archer, the triumphant solver-of-problems!

When it all comes to a complete stop, when my day ends and the safety locks slide apart, I find my footing and move again to the sidelines.  I feel tired.  My head rests on Aubrey’s shoulder and I sink just a bit, as her arms wrap around me, holding me still to stop the spinning inside.  There is relief in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I still just wanna be the mom.

I will try again tomorrow.

“God bless our whole life together”

 

Today I am grateful for:

• Hope.  Plain and simple.  Sometimes I don’t realize that I’ve lost touch with hope.  I have all these quotes taped to my computer (“All is well, out of this experience only good will come” and “Optimism is the faith that leads to achievement” and “Leap and the net will appear” etc.) and sometimes I think I do have optimism and faith and I am trusting and leaping freely.  But then I realize somewhere along the line hope has actually slipped to the back of my mind, that I’m not as free as I had thought, there’s something heavy in the background sitting on a small but growing patch of anxieties.  When hope appears again, the relief I feel is like a cool breeze from the ocean on a hot beach day– I don’t realize how I had missed it or how sheerly *good* it feels until it comes again and reminds me.  This week I saw the movie “Wretches & Jabberers“ for the first time.  It brought that feeling of hope back to me.  Not because of the story or the specifics, but because as I watched this film another window opened in my mind.  My proverbial “house” where God closes doors and opens windows became bigger and through the new open window created by these filmmakers came a gentle ocean breeze which awakened hope again in me.
• Rainbows & nail polish.  I painted my toenails last night, each toe a different color like a rainbow, because Aubrey & I will be attending the Pride festivities in San Francisco.  Why something so mundane on a gratitude list?  Because I like pretty toes, because I can afford five different bottles of colors (cheap colors, but colors nonetheless!), because I like sandal weather.  And most importantly, because I live and work in a place where I can be open about who I am and I can show it on my toes.  How grateful I am for openness and acceptance!
• Bedtime prayers & Alex’s words.  “Wretches & Jabberers” had a profound effect on the way I see the whole autism world.  One of the two main characters in that film, when asked what people with autism are like, responds:  “More like you than not.”  I know that.  Of course I know that.  But deep down that line stirred something in me.  It brought all the advocating, writing, fighting, learning, stretching, wanting, waiting, worrying, trying & planning & crying & wishing I do for Alex back to the realm of typical mother.  I do all that because I am mom, not because the autism needs to be solved.  The communication gaps need to be bridged, the awareness needs to rise.  But my beautiful boy is still– definitively– more like me than not.  Looking through this new, hope-full window last night, I cuddled up with Alex for bedtime prayers.  We said our usual stuff, we said thank you, we asked God to keep the people we love happy & healthy & safe.  I told Alex I am proud of him & I know how smart he is, that I’ve known it all his life, I have always believed in him and always will.  Then I asked if he had anything else to add to prayers.  He paused a minute, looked at me thoughtfully and said:

“God bless our whole life together.”

Amen.

“Write Mommy”

Alex’s Mother’s Day gift.

Sisters + Happiness = Hannahappiness?

A while back I joined a group in my area called “The Happiness Project.”  In one of their email newsletters, they referenced an article on sisters and happiness:  Why Sisterly Chats Make People Happier

I thought the article was really interesting, and it started me thinking about my little girl and her relationship with her brother and all the intricacies of their sibling situation.  The article was focused on adult relationships, but of course my mind kept going back to language and kid conversation and the difference between Hannie’s communication and Alex’s communication. 

Last week Aubrey and I visited Alex and took him out for a round of mini-golf.  On the car ride there, I babbled and commented and babbled on– as I usually do.  Alex sat quietly, watching the road (he is so big he can sit in the front seat now, believe it or not!) and listening.  At one point I paused and said:

“Moms talk a lot, don’t they?”

which elicited both a smile from Alex and a laugh of agreement from Aubrey in the backseat. 

Moms do talk a lot.  Apparently, this starts when we’re kids.  And if we’re sisters, the talking– just the stream of everyday conversation– can be reassuring and helpful to our siblings because of more than just the content of the words.  The routine chatting, describing, talking about the weather, so to speak, in itself can create connection.  Maybe it’s not the words exactly, but the word-behind-the-words or the feeling of “sharing life together” we get when someone talks from their own perspective about what’s going on out there in the world.

I mean, c’mon– that’s the reason you read my blog, right?

I like to think that Hannah’s little conversations, the sound of her voice, her questions, the way she says “I love you” will be important to her brother as they grow up not just because of what she says, but because the sisterly babble will remind Alex of the lifelong connection they’ll always share.

What do you think?

Alex-isms

Okay, you all know my daughter Hannah can throw out the funniest one-liners.  She’s got the language, the attitude and the comic timing of a pro.  But she’s not the only kid in the family whose sophisticated sense of humor keeps me in stitches.  Alex’s humor is a bit harder to blog about– since most of the stuff that cracks him up is visual or slapstick (email me for the link to his YouTube channel if you like!)– but over the years there have been several memorable moments of perfectly-Alex funny which will always stick with me.

Alex loves to mix up words or find alternate meanings for words and phrases.  His receptive language, reading comprehension, spelling and writing abilities are right up there with super-smart typical kids.  Only difference is the challenge he has with expressive language and getting the words out.  For your reading pleasure, some of my favorite “Alex-isms” :

 *x*o*x*o*

Me (talking out loud writing a grocery list):  “… tomato sauce, diced tomatoes, kidney beans… ground meat, chicken… Alex, would you help me write the rest of this?  Write down what you want at the store.” 

Alex (taking pen & paper):  “ketchup, mustard… butter… mutter… Mommy!”  with a big winky grin.  Hands paper back with the rest of list printed and a smiley face drawn and labeled “mommy.”

*x*o*x*o*

At bedtime, Alex breaks into spontaneous giggles during cuddle time:  “Mommy, go to SHeep!” 

Me:  “Go to SHeep?  Silly boy, you mean go to—” 

Alex:  “Baaaaaaaah!”

*x*o*x*o*

Alex (huge charming grin, playing his version of Scrabble):  “Word!” 

Me (laughing):  “Dude, truck-azonkquilapsafo is *not* a word!”

 

*x*o*x*o*

Alex (age 3 in doctor’s office, singing to himself while Mom & Dad consult with the nurse):  “Bah-munty.  Da funty munty. .. Bah-munty munty…” 

Dad:  “Wait a minute, our son is singing ‘Brass Monkey’ by the Beastie Boys!” 

(and indeed he was– in perfect rhythm!)

*x*o*x*o*

Me (walking Alex to the door to let in a home program teacher he didn’t particularly like):  “Let’s open the door for our friends.” 

Alex’s welcome message:  “Goodbye, please.”

 

*x*o*x*o*

When Alex was a baby, I made up some ridiculous nicknames for him (as all new mommies do when they babble with their newborns).  One of my favorites was “Bunny Luv Pickle Pop” and I used to sing it to the tune of “Sugar Pie Honey Bunch” by the Temptations.  One of Alex’s first home program teachers finished a session of discrete trial training with him, spontaneously turned to Alex and in an animated voice said “Bunny Luv!!” to which 4 year old Alex responded without hesitation, “Pickle Pop!!”

*x*o*x*o*