Category Archives: Parenting

Entries about what it means to be the parents of an autistic child.

Finding Ways to Connect With Other Human Beings

Posted on June 26, 2012 by | 25 comments

I have a relatively new friend.  We’ve been talking a few times a week.  She makes me really happy because she’s funny, smart and kind.  You know that magical feeling when you connect with another human being?  Someone who is special?  It’s a deeper bonding than with most people, you can’t explain why that is, you just feel it and it’s mutual.  I feel safe enough to confide in her.  I’m pretty sure she feels the same.   When we aren’t talking I think about her.  I wonder how she’s doing, is she okay.  And then one of us reaches out to the other and we start talking.  Only with my friend we don’t talk in the conventional sense, we type back and forth in real-time.  My friend reads very quickly, she’s hyperlexic; if I mention something that she hasn’t read, she’ll zip off and do a little research while I’m still typing out a sentence.  Then she’ll reply with the knowledge of someone who knows, but didn’t in the previous sentence.  It makes for an interesting conversation.

As a teen she had alexithymia.  Meaning it was difficult for her to use words to describe the emotions she was having, as well as understand other people’s emotions, which combined with her literalism, caused a great many problems.  So yesterday she was telling me about how she used echolalia and physical actions as a way to connect, but it didn’t always work out so well.  People misunderstood her.  And I thought of Emma.  Because Emma doesn’t have the language to describe her more complicated feelings.  So when she wants to connect, she’ll hit or she’ll say, “No, you cannot pull Mommy’s hair.”  Which means that she’d like to, but she knows she shouldn’t.  At her school she pulled her friend’s hair and was punished.  Emma knows this is something that while she enjoys doing it, the recipients often do not.  That must be very confusing to her.  Emma will say things like, “No you cannot pinch Mommy.”  Then she’ll look at me with a mischievous look and will wiggle her fingers at me as though she were about to pinch me.

“No Emmy!  Don’t pinch Mommy!”  I tell her.

Emma thinks this is the height of hilarity and will say again, “No.  You cannot pinch Mommy!  Pinch Mommy!” and then as though the feeling is too powerful for her to control, she will.

“Ouch!”  I will say.  And Emma will double over in laughter.

Last night we went out to dinner in town.  It’s very warm here, so we sat outside.  One of Emma’s favorite games is to pretend to give me a shot.  She “washes” my upper arm by rubbing it with her hand and then pinches me.   “Swish, swish,” Emma said, while pretending to put a band-aid on my arm.   “Now you do it,” she said, covering her eyes with one hand, while offering me her arm.  We play this game often.  It is also her way, I think, of working through her fear of having a shot or the finger prick they sometimes do at the doctor’s office.

Yesterday as my friend and I were talking I realized something else.  Emma is doing these things, punching, pulling hair, pinching, because she wants to connect, she wants to get a response, she wants to interact.  It’s not just a one-sided gesture.  She is trying, in the only way she knows, to make contact.  Sadly her gestures are often ignored or she is told no, she cannot do that, so she is then further limited.  She doesn’t have the words, she cannot always make sense of what she’s feeling, but she really wants to interact, to develop a method of “talking” with another person.  She’s doing the best she can with the limited tools she has at the moment.

I realized I needed to help her find physical ways to connect that will not be perceived as “harmful” by the other person, but that are also meaningful to her.  I will have to speak with my friend about this, because she will undoubtedly have some good ideas, besides I haven’t spoken to her in at least 16 hours and I already miss her.

Last night at the restaurant, Emma wearing Richard’s hat

This morning – sunrise on the ranch

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Posted in Autism, language, Parenting

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Two Strangers, Two Responses to Autism

Posted on June 25, 2012 by | 12 comments

Stranger number one:  A man seated next to me on the flight from New York City to Denver.   He was distressed and upset because of the extensive delays we experienced and assumed he would miss his connection home to Vancouver where his two sons and wife awaited him.  As he spoke to me, he looked over at Emma, seated in the window seat and who appeared to be sleeping, thumb in her mouth, head resting on her horse pillow, a small scrap of her green blanket clasped in her fist.  Her hair fell over her face, covering part of it.  He nodded toward her, “She’s tired, huh?”

“Yes,” I said, looking over at her and smiling.  Emma opened one eye and made a little grunting noise, before closing her eye again.

He asked me if I was traveling alone.  I explained to him that in fact we were all spread out over many rows.  Because of all the delays the airlines changed our seats, giving most of us middle seats, making it impossible to convince anyone to switch with us so that we might sit together.  At a certain point, I took a lapse in the conversation as an opportunity to pull out my book, Representing Autism.

“Are you a teacher?” the man asked.

I told him I was not, that my daughter was autistic and it was a subject I was particularly interested in.

“Ah,” he said, knowingly.  “My eldest son is too.”

He went on to relate how his son had been poisoned by high levels of lead because his wife had drunk tea throughout her pregnancy from a samovar.  This was confusing as, strictly speaking, his description would make his son’s issues lead poisoning and not autism, but before I had time to think of an appropriate response, he told me that because they had him chelated he was now high functioning and that God had blessed him with a child who could speak.   And while I think it’s wonderful many people find solace in “God” I really hate comments like this, where it has to then be concluded that God is not blessing others with things like poverty, starvation, murder.  I know, I know, don’t get me started.  

He then told me his wife contributed to his son’s autism because it was genetic and “the mother carries the genes that cause autism.  That’s why more than 80% of them are boys.”  This last remark was so staggering in it’s complete lack of logic I was thrown into a state of stunned silence.  Then he capped the conversation off with a nod to Emma and asked, “Is she functioning?”

Do NOT say another word,  I pleaded silently, while also thinking,   You have the chance to say something that might change this man’s point of view.  But I couldn’t.  I was too angry and tired, the delays had taken their toll.  I had hit a wall, silently cursed this man and just wanted to escape into my book.  I no longer felt magnanimous or in the mood to offer an opposing view.  I felt hateful, furious and resentful.  I was disturbed by the man’s, seemingly unintentional, but never-the-less confused ideas of cause and blame, not to mention the casual comment about chelation coupled with how his son’s heart stopped twice while doing so and that didn’t even cover the comment about God, which would have taken me down a whole other path.

“Does she speak?” he continued.

“She’s autistic.   Her hearing is actually excellent,” I snapped.  “And I do not speak about her as though she cannot understand.  Her intellect is as sharp as her hearing.”

“Oh!” the man said, taken aback.

All thoughts of offering patient opposing views in a kind tone went out the window.  I pulled out my book, a pen and my notepad and began reading.  End of conversation.  It must be said, this was not one of my prouder moments, but I didn’t have it in me, I just didn’t and it depressed me that so many are so misinformed.

The second stranger was a woman with two small children who asked me, as Emma and I were waiting for the bathroom, if I would keep an eye on her two kids so that she might use the bathroom.  Emma peered with curiosity at her daughter who was four-years old and son, who was not quite two.  “Boy,” Emma said, pointing at the little boy.

“Yes,”  I said, kneeling down.  “What’s your name?”

We learned that the children, Alice and James were also headed for Aspen on the same connecting flight as us.  Their Dad couldn’t go with them, but their Granma was meeting them in Denver.  When Emma and I returned to our seats, Emma said repeatedly, “Go see  Alice and James.  All go together to Aspen.  Go to Granma’s house and play with Alice and James.”

When we found the gate for our connecting flight, there was Alice and James with their mother who proceeded to ask Emma questions.  “What was her name, how old was she, did she have a brother, his name, age, where we were going, etc.  All the questions she directed to Emma and she waited for Emma to answer, even when it seemed she might not.    A couple of Emma’s answers were somewhat cryptic, as when asked what she liked doing when in Aspen and Emma answered, “Make cake.”  But all in all it was really nice to see someone behave in a sensitive manner while respecting Emma’s need to process, giving her the time to do so. It was in stark contrast to the first stranger.

This morning when I told Richard I was posting this piece, I said, “I’m too tired to find the humor.”

“My brain is operating on a case by case, need to know, basis,” Richard replied.

And that remark made me laugh.

English: Looking south from Top of the Rock, N...

(Photo credit: Wikipedia)

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Posted in Autism, Parenting, travel

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

Posted on June 22, 2012 by | 28 comments

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…

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Posted in Autism, Marriage, Parenting

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Merlin & Emma – Or How To Not Do Something You Don’t Want To Do

Posted on June 20, 2012 by | 9 comments

6:03AM – Our bedroom

Em:  Hi Mommy!

Me:  Hi Emma!

Em:  It’s six zero three.

Me:  You’re awesome.  Merlin comes over in all his silky, soft adorableness.  Aww…  Look Em.  It’s the kitty.  He is so soft!

Emma smiles at me.  But makes no attempt to pet him and he’s rubbing his body against her.

Me:  Emmy, look at the kitty.  He’s so soft!  I stroke Merlin, who begins purring loudly.  Emma begins to hum a little song.

Me:  Em!  Come on!  Pet Merly.  He’s such a good kitty.  I say this as I stroke Merlin who walks lazily passed Emma towards the end of the bed.

Em:  Oh!  Oh!  I can’t reach!  I can’t reach the kitty!  She says this while in an exaggerated display, extends her arm as though she were trying to pet Merlin.  He is, in fact, within reach.

Richard begins to laugh.

Me:  Emmy!  You can too reach him!  Now Richard and I are both laughing.

Em:  Huge grin and with feigned sadness says – Oh no.  I cannot reach the kitty.  I can’t pet him.  Awwww.  I can’t pet Merly.

I love that kid.

7:30AM – In our study

Em:  Mommy, I want you to help me brush my teeth please!

Me:  Okay Em.  

Me:  (To Richard)  I’m almost finished with this post. I’m keeping it short and sweet.

Richard:  You mean like me.

I love that man.

Walking the walk

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Posted in Autism, Parenting, Pets

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An Ode To Richard

Posted on June 18, 2012 by | 8 comments

I’m not trying to confuse anyone.  I post Monday through Friday.  Father’s Day was yesterday, so technically, writing an “Ode to Richard” today makes more sense than posting it last Friday when it would have been more than 48 hours away as opposed to about ten (at the time of this writing.)  Or so goes my convoluted logic.

Father’s Day, 2012 – Richard walking along the Hudson River with Emma and Nic

Autism doesn’t say much about all those dads out there who are tirelessly working to help their autistic children.  I know a few of them, but the one I know best, obviously is my husband, Richard.  This post is for him.

An Ode To Richard

You didn’t have a role model in your own father, yet you’ve managed to become one to your two children, Nic and Emma.

You’ve taken the traumas of your past, looked at them, dissected them and in doing so, pushed yourself to make sure you won’t repeat their lessons.

You are strong and secure enough to know that men can and do cry and those tears in no way diminish who you are, but serve to make you even more courageous and brave.

Your sense of humor has taught your children that nothing is so serious we cannot laugh.

By pursuing your dreams and doggedly doing what you love, you have shown them that they too can dream.

By never giving up, persevering and following your heart instead of a career you detest, but that will ensure a large income, you have encouraged them to follow their own.

By working tirelessly toward a goal, no matter how many obstacles have been thrown in your path, you have taught them to never give up.

By never accepting the word ‘no’ when applied to something you want, you have taught your children that what they want and care about is important.  You have taught them that they are important.

Through your compassion you show your children the path leading toward humanity, love and kindness and away from violence, cruelty and narcissism.

By giving your children your time, by enjoying their presence, by actively participating in their daily struggles, you have given them a gift no one will ever be able to take from them.

You have provided them with a role model so that they may not have to work as hard as you have.

You have given them the gift of knowing they are loved by their father, accepted completely for who they are and who they will become and in doing so you have provided them with a stability and security no structure or amount of money can.

You have provided them with a map, to help them navigate this life.

In giving, you have received.  In listening,  you have been heard.   In leading, you have been led.  In loving them, you are loved.  And yet you do all of this, not because you want anything in return, you do all of this because this is who you are.

To Richard.  My love.  My partner.  My inspiration.

Related Articles:

Richard, Oxytocin, Literacy & Love – Not Necessarily in That Order

Aspen, Work and Richard

Marriage – Part I

Marriage – Part II

This one is for the dads (Stuart Duncan’s Blog – Autism From a Father’s Point of View)

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Posted in Autism, Father, Parenting

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((((((Emma)))))), Facebook, Twitter, Blogs and Other Joys

Posted on June 15, 2012 by | 18 comments

When you look at the title to this post do you read it to mean – Hugging Emma, Facebook, Twitter, Blogs and Other Joys?

(If you answered yes, you are correct.  ((((Insert name)))) = Hugging.  The more parentheses, the bigger the hug.)

Within the autism community where Facebook reigns as the ultimate gathering place, the use of emoticons, ways of expressing emotions and physical actions, are commonplace.  I would argue that within the autism community the use of emoticons is more prevalent than within the neuromajority population.  But I need verification from my Autistic friends before I make such a statement.  It’s a thought based on my observations and interactions.  Which, by the way, speaks as much against Simon Baron-Cohen‘s various theories about Autists lacking empathy and a desire for interactions as it does to the level of support, gestures of kindness and friendships that are developed and maintained over the internet.  (I just submitted an amended version of my recent post – An Empathic Debunking of the Theory of Mind – to Huffington Post so he’s very much on my mind these days.  I’ll give an update when I see if and when it’s been published over there.)

Facebook, a crowded virtual space where conversations overlap, people you’ve never met interject themselves into a conversation before moving on, friendships are formed, rekindled and developed, strangers “poke” you to say hi, even if the only connection you have is that you both occupy space in that crazy mosh pit that Facebook single-handedly created.  If you think about it in these terms, Linkedin has a more conservative, suit and tie required at the door feel to it, I haven’t figured out where twitter falls in all of this, maybe it’s akin to speed dating, while blogs are the mothership, making the insanity over at Facebook all the more raucous and surprising.

It must be said, I hated Facebook when it began.  I refused to join, I felt indignant when people would discuss their “friends” or about something that had gone “viral.”  Who cares?  Who has the time?   I scoffed.  This is just a bunch of people with way too much time on their hands.   And then I would settle back to my tenth game of Spider, while reminding myself that I really should get some sleep.  But eventually I joined.  For business reasons, I told myself.  This is a pattern for me.  I observe, remain on the side lines, dip a toe in the murky waters, sit back, observe some more and then dive head first into the deep end, blissfully unaware of any rocks that may lurk under the surface.  I’m not encouraging this approach, it’s just an honest assessment of what I have a tendency to do.

Yesterday I was a mess.  For those of you who reached out, thank you.  I was teetering on the edge, trying to keep it together, not doing a great job, but doing my best to work, taking on one small task at a time.  And then my friend stepped in and held out her virtual hand.  (((((( Insert Name ))))))  Like a life line, she held her hand out and gently pulled me off the ledge.   Lots of emoticons were used.  I’m not fluent in emoticon, but she’s been a kind and patient teacher.  Did I mention she’s Autistic, not that it matters, except that it does, if only for this reason:  Autistics aren’t suppose to be like that.  That’s what we neurotypicals are taught.  Right?  It’s what all those autism specialists tell us, right?

She sat with me, literally, while I wept.  ((((((((((Insert my friend’s name)))))))))   She said all the right things and by the time we both went back to work, I was laughing.  But wait, that can’t be right.  She must not be autistic, because she doesn’t fit the mold.  Right?  Isn’t that what we do when someone defies a stereotype, instead of re-examining the stereotype, we relabel the person?  Can we all agree to toss this insane theory about Autists lacking empathy, lacking a desire for interaction and friendship?  Can we please just stop it?  Imagine if you tried to reach out to someone, only to have them reject you because of some mistaken idea they had about who you are and how you are supposed to behave?

Which brings me back to Emma.  My beautiful daughter.  I don’t know if she’s already aware of these stereotypes and how they apply to her.  My guess is, she is.  It’s one of the many things I wish I could control and change.  But I cannot.  What I can do is make sure she knows that I am here, supporting her, encouraging her, with my arms open for those times when she needs to feel them wrapped around her securely in loving embrace, just as my friend did to me yesterday.

(((((((Emma)))))))

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Posted in Autism, Parenting, social networks

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Listening to Emma

Posted on June 14, 2012 by | 23 comments

“Bad ear infection.”  This was the pronouncement made by the doctor who Emma saw yesterday.  Emma knew.  (Click ‘here‘ for a post about another time Emma knew and the only other time Emma had an ear infection.)  Emma told us to take her to the doctor.

We are relieved we made an appointment and sought help.  We are grateful to have her on antibiotics, which will ease her pain.  We are happy she is feeling better.  Those are the important points.  All the other words racing around in my head are less factual and more words that poorly convey my feelings of despair that I didn’t realize her pain was different than usual, that it meant something else was going on than a change in air pressure and anger with myself that I didn’t rush her to the doctor the minute the school called me two days ago.  My defensiveness, like the stereotypical white angel perched on one shoulder whispering, but you didn’t know, you couldn’t have known, is countered by the angel with devil’s horns yelling, “Yeah, but you should have!”  That dialogue or actually any dialogue that begins with – But you should have known – is better left elsewhere.

The art of the beat up job, something I could certainly write a handbook on at this point is not a message I am interested in perpetuating or sending.   What I am interested in is how I  might avoid a similar scenario in the future and take the necessary actions so that next time I can take care of my daughter in a more timely manner.   That’s interesting.  The beat up job is not.

Conclusion:  When Emma says, “Go see doctor.”  Immediately get her to the doctor.  Do not wait to see if things will get better.  Emma knows.  The cliché “better safe than sorry” leaps to mind.

This morning – Emma dancing to MJ’s Beat it 

Emma’s new-and-improved old string is back!

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Posted in Autism, Ear infections, Parenting

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What’s a “Good” Mother, Anyway?

Posted on June 7, 2012 by | 24 comments

I cannot stop thinking about one of the Autists who commented on my latest Huffington Post piece.  He is Autistic and is unable to function without the support of his family.  He writes about his wish for a cure.   He writes about his short-term memory, his “lack of visual-spatial and motor abilities, inability to interact with others in basic interactions, weak attention span, processing speed, reaction time…”  He writes, “If I had skills and could really absorb knowledge, I’d have some kind of a career and I would do basic things without my family all the time.”

Before I responded to him I reached out to some Autists I know asking for their thoughts.  Some people responded, for which I am grateful.  Steve, diagnosed after his child was diagnosed, thoughtfully provided me with a number of links and introduced me to Amy Sequenzia, a non-speaking, Autistic self-advocate.  Amy blogs for a wonderful community blog Ollibean and was profiled on The Thinking Person’s Guide to Autism, Slice of Life Series (click on her name to read) and  Paula Durbin-Westby the mastermind behind “International Autism Acceptance Year”  also profiled on TPGA’s Slice of Life series offered some suggestions.

As I read their thoughts and opinions and words I felt a surge of anger.  Because these are the people the neuromajority should be listening to.  Take a moment to imagine.  Imagine you were unable to do a number of things without the help of others.  Think how you would feel if those people, the very people you depended on spoke to you with undisguised annoyance, or worse, outright contempt.  Think about how that would effect you.  You didn’t have the choice to walk away.  You didn’t have the ability to leave.  You had to stay because you needed their help.  But their help came with a price.  It wasn’t given freely.  There was disdain, irritation and often you were spoken to as though you were dirty, damaged or contagious.  Or perhaps people were kind, but full of pity and spoke to you as though you were a child.  Think how years and years of being treated this way would make you feel?  (Obviously this is not every Autistics experience, but sadly it is a great many.)

Now think  how you’d feel when the coverage in the news and elsewhere about you, about the things that effected your life, were spoken without a word from people like yourself.  Those voices weren’t being heard.  Those voices were drowned out by all the other louder voices intent on making decisions about YOUR life and for you.  How would you feel?  I would be angry and then I would feel depressed and in despair and yes, I just might wish for a cure.

But as the parent of an autistic child, that cure idea has done a great deal of harm.   It caused me to lose the ability to logically see things from a practical perspective.  As I wrote in my reply to Billy – When Emma was diagnosed I was determined to cure her. I thought that’s what a “good” mother should do. In my determination to cure her, I lost sight of who she was. I thought she was hidden under the “autism” and if I could get rid of it, there she’d be, like a baby chick emerging from its  shell. Only that’s not what happened. I couldn’t find a cure. I discovered, when I stopped looking, she was there, waiting for me to see her as she was, as she is. Will she have difficulty in life? Absolutely. Will the world treat her as less than? Yes, sadly so many will.  Some speak to her as though she were an animal. I would do anything to have the way people treat her change.

I can’t make people do that, but I can try to make them think about their assumptions. And while I’m doing that I can appreciate Emma for who she is in this moment, exactly as she is.

I don’t have time to write more now.  But this conversation, whether I just end up talking to myself, or whether I can get others to join in, I will continue, with the same relentless determination that I once pursued a cure for my daughter.

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Posted in Autism, neuromajority, Parenting

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How Emma Takes Control of Time

Posted on June 6, 2012 by | 3 comments

We have a morning routine.  This is not a routine forced upon us because Emma is autistic.  This is our morning routine.  A routine we all profit from.  It smooths the transition from groggy-still-asleep-trudgery to wakeful-functioning-so-that-we-can-get-out-the-front-door-and-go-our-various-ways.  In other words routine simplifies our lives.

Emma’s body clock, and  mine too, wakes at 5:30AM.  To tell her to go back to sleep is like telling me to take a nap at 11:00AM.  It’s not going to happen. But she knows she isn’t allowed to leap into our bed until 6:00AM.  This morning she came into our bedroom and announced “It says five and three and eight.”  Then, because she knows she isn’t suppose to come to us until six, she wandered out.

At exactly 5:57AM she reappeared.  I can’t tell her to leave with only three minutes to go!  She crouched in front of the DVD player and whispered, “It’s five and five and seven.”  She waited for exactly three minutes and then crawled onto our bed with an enormous grin.  “It’s six!” she said with gleeful abandon as she dove under the covers, tossing  Merlin from the bed like a toy sailboat on stormy seas.   He landed on the floor with a dejected plop.

Later, after Nic had reluctantly awakened, breakfast was eaten, dishes cleared, lunch made, Merlin fed, his water bowl refreshed and his  litter box cleaned, Emma ran into the other room, returning with my iPhone in her hand.  “Have to use the clock,” she said.  She then set the timer app to one minute.  She sat back in a chair, humming to herself.  When the timer went off she said, “Uh!  Time to take the vitamins!” and ran off to do just that.  She returned moments later and again set the timer for one minute.  Again she waited until the timer beeped.  “Uh!  Have to go brush my teeth and hair!”  and off she went.

What is astounding about this is that these are not things Emma particularly enjoys doing.  I must remind her, to which she will inevitably reply, “Just one more minute?”  “No, Em.  Do it now and then you can have a minute after you’ve finished,” I reply.  So Emma came up with a solution to this.  She has incorporated her need for the one minute adjustment period she needs into her routine before I reminded her!

As I write this, while marveling at Emma’s creative process and progress,  I can hear the timer going off again.  She is rummaging around in the dryer.  “Cokie‘s clean!” she says triumphantly.

Merlin looking majestic

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How I Made a Mistake and Was Given The Opportunity to Say I’m Sorry

Posted on June 5, 2012 by | 59 comments

“You put the toast in the basement.  That made me sad.”  Emma stared at me expectantly.

I drew in a breath.  My chest felt tight.  I knew exactly what she was referring to.  We’ve had similar conversations, but she’s never said it so directly.

This past fall in one last gasp of determined insanity I decided that I hadn’t done the gluten-free/casein free diet “right” when we put her on it a month after she was diagnosed and still two-years old.  So this fall, I took Emma to a naturopath, who’d been recommended to me, and after a number of “tests” he mapped out an even more restrictive diet than the standard GF/CF.   You can click on the links I’ve provided for more about all of this.  On the first day of the diet I cleared the house of all the foods Emma loved, but could no longer eat, according to the new diet.  Except I forgot to remove her favorite bread.

That morning she saw the bread and attacked it with the vigor of a rabid dog.   I whisked it away and hurried down to the basement with it, where I threw it into one of the large garbage bins, while Emma screamed and clawed at the door in an attempt to follow me.  I had it in my mind that it would all be worth it if the diet worked.   Which, to me, meant that she would suddenly begin to speak in beautifully articulated sentences, would be able to concentrate, would be able to comprehend what she read and would eat a wider range of nutritious foods.   Only the diet didn’t “work.”  Just as the GF/CF diet we’d put her on six years before, didn’t work.

Emma after 6 weeks on the diet

In many ways, that diet was a turning point for me.  After a couple of months on it and no change other than a significant weight loss, I reintroduced Emma to all her old foods, the foods she loves, the textures and smells she was familiar with and she was in bliss.  But Emma remembered those seven weeks when I had taken everything away from her.  The trauma she felt as a result of my actions was something I have been aware of.  I have, on several occasions, told her how sorry I am for what I did.  I have spoken at length to her about it, but in all those conversations, Emma has contributed very little until last night.  Now it was clear she needed to express herself.

When I started making decisions about treatments for Emma, many of them Richard did not agree with and he, thankfully, said, “No.  We are not going to chelate.”  Or “No.  We are not going to subject her to B-12 shots.”  Or “No.  We are not going to take her for another hyperbaric chamber treatment.”  There have been a number of things, that in my desperation to be a “great Mom” I would have tried had my wise husband not stopped me.  These are not moments I am proud of.  I have made a lot of mistakes.  This last diet was just one in a long line of bad ideas.  I know I will have more.  I understand it is human nature, but I also will be damned if I’m going to try to gloss over the choices I made that hurt Emma.

I promised myself long ago that when I became aware of a mistake, I would try to make immediate amends.  I don’t mean a quick, “Oops, sorry about that.”  I mean an amends.  Which is different from an apology.  An apology is what you say to someone you bump into by mistake on the subway.  An amends is when you seek to change your behavior so that you might at least have the chance of not repeating that mistake.  I try to do that consistently with both Nic and Emma.  I am sad to say, I have had to make a great many amends over the course of their short lives and some I’ve had to say over and over because I just can’t seem to get it right.  So when Emma said to me, “You put it in the basement.  You made me sad.”  I knew what I had to do.  I knew I had to listen to her.  I knew I had to resist the urge to make it better.  I knew I had to be present, no matter how much it might hurt to hear the things she would say, I owed it to her.  I had to give her that, at least, I needed to give her that.

I put my hand on her arm.  “Tell me, Em.  I promise to listen.”

Emma nodded her head.  “Never, ever.  You put the toast in the basement.  Mommy no!  Ahhhhh.  Mommy please!”  She pretended to grab at the bread and then she made a muffled screaming noise.  She got up off her bed and twirled her string.  She looked over at me.  “You made me so sad.  Emma’s crying.”

I nodded.  “Emma.  I’m so sorry I did that.  I made a terrible mistake.”

Emma looked at me.  She put her hand on her chest and she said the following words that broke my heart.  She said,  “You have to say you’re sorry to Mommy.”

I thought about all those Autists who talk about their awful childhoods and  how they were made to feel broken, not good enough and that it was somehow their fault for the terrible ways they were treated.   I thought of how those feelings about themselves continue to bleed into their lives today.  I thought about how they felt they needed to apologize for who they were and how so many of them believed these lies and some continue to.

“Oh God, Em!  No.  No.  You did nothing.  It was not your fault. I was wrong.”  I put my hand out to her.  “I should never have done that.   I am so, so sorry.”

Emma came over to me and sat down.  She put her hand on my shoulder and leaned her head into me and said in a quiet voice, “Mommy says I’m sorry.  No more bread in the basement.”  She paused and then said, “But next time just one?”

“No Emma.  Not one.  Not any.  I will never do that to you again.”

“Not one.  Zero.”  Emma smiled.

“That’s right.  Zero.”

“Not one, not two, not three…”  Emma counted up to one hundred.   When she got to a hundred, she smiled and made a zero shape with her hand.  “Not one hundred, only zero.”

I smiled.  “Yes, Em.  Only zero.”

Emma nodded and then she said, “Mommy lie with Emma and read stories.”

“Okay,” I said.  As we snuggled under her blankets together I said, “Who’s the most amazing girl in the whole world?”

“I am,” she said with a smile.

 The Depiction of Autism and Why it Matters on Huffington Post

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Breastfeeding? I’m More Interested In Emma’s Culinary Skills

Posted on June 1, 2012 by | 17 comments

All of you have undoubtedly heard and some may have even read the issue of Time Magazine featuring a beautiful young woman on the cover with her three-year old son, who by the way, looks large enough to take on my 12-year old, (but that really is beside the point, or maybe it isn’t actually) standing on a child’s chair while his mouth is glued to her delicate breast, presumably breast feeding.  Both are staring into the camera while the text reads “Are you, and in large, red, bold type, Mom Enough?”  I’ve included the photo at the end of this post.

This is not a subject matter I care about.  At all.  They may as well have made the headline  “Masturbation:  Who Does and Doesn’t.”  My response would still be – who cares and frankly, who has time?  I haven’t picked up a magazine, any magazine for a long time.  My idea of reading a magazine is to glance at the salacious headlines on various covers while in line at Duane Reade picking up another bottle of shampoo because Emma has just emptied the contents of the last bottle into our sink while stirring it around with a large wooden spoon and singing, “Stir, stir, stir the soup, stir, stir, stir the soup…”  (I’m taking run on sentences and parenthetical remarks to a whole new level here.  Feeling sadly proud of this, I should add.)  In any case, I’m showing up late to this particular party, something I seem to have a knack for, because I’ve got a lot of other stuff going on and simply don’t have time to keep up with the latest “news.”

But last night while waiting for Nic’s school concert to begin, I scrolled through some tweets and came upon this article written for Redbook (another magazine I never read), by Joslyn Gray entitled, 10 Reasons I Don’t Care About Time’s Breastfeeding Cover.   Had I not had an hour to kill, had I not forgotten to bring any other reading material, I would have ignored the tweet and thus the article and would have missed out on this hilarious piece.  I had to share the link here because I laughed out loud while reading it.  Literally.  Out loud as in inadvertently snorting.  Joslyn Gray also has a blog – Stark. Raving. Mad. Mommy.  I haven’t had time to go to it, but intend to.

After reading the article I had to find the actual cover of the Time Magazine piece.  As I looked at the cover, I thought – How much did this child weigh at birth?  How is it possible that her breasts are that small and perky and yet contain enough milk to nourish such a big kid?  Is he that tall because she’s still breast feeding?   Calcium…  And then I made a mental note to encourage Nic to drink more milk.  

I then went off into a whole reverie of when I was breast feeding my children and how I luxuriated (briefly, oh so briefly) in having, what Richard and I joked, “porn tits” because when they were engorged with milk they became rock hard and therefore looked fake, as in 1950’s fake, before cosmetic surgeons perfected the art of more natural looking and feeling, I’m told, breasts.  Emma didn’t get her teeth until very late and yet all she wanted was to eat real food.  Nic got his teeth early and yet preferred breast feeding.  It all seemed like a cruel joke.  Emma would snatch whole steaks off nearby plates while the unsuspecting person would stare in surprise at their now empty plate and wonder what happened, while she gummed the steak voraciously.

Thankfully Nic’s concert began, interrupting my musings.

The point is I, like Joslyn Gray, don’t care about who breastfeeds, who doesn’t, for how long or anything else breast related.  I’m much more interested in figuring out why Emma thinks pouring an entire bottle of shampoo into the kitchen sink and then mixing it with a wooden spoon constitutes soup.

The magazine cover that has America talking

My latest piece The Depiction of Autism and Why it Matters published in the Huffington Post

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Emma’s Unique Way of Telling Time

Posted on May 31, 2012 by | 5 comments

“The clock says four and five and seven,” Emma can be heard saying.  There’s a rustling sound and then an audible sigh as she settles herself on the floor six inches away from the “clock,” which is actually our DVD player.  I can just make out the shape of her back.  She’s watching the clock.  Literally.  I roll over onto our cat Merlin, who has taken to curling himself up into a tight ball against my upper body.  The heat he emits causes me to wake in a sweat several times throughout the night.  I’ve grown used to this and am grateful in the knowledge that when menopause hits I will be that much better prepared.  Merlin uncurls himself without resentment and arches his back.  All witchy and halloween-like, he gives me a baleful stare with his yellow/green eyes.  Emma stays put.  “Four and five and nine,” she mutters.

The morning light has yet to reach our northern facing windows.  Richard reaches for his cell phone.  We are inundated with technological gadgets of one kind or another.  iPads, iPhones, everyone has at least one computer, Richard and I each have three.  Despite the fact we do not watch television, there are always several screens of some kind on at any given hour of the day or night.  “What are you doing?” I whisper to Richard.  As if Emma cannot hear me.  As if she will not take this as permission to get into our bed with us.  

“Checking the weather,” comes his reply.

“Eighties.  It’s going to be in the eighties today,” I tell him.  I know this because I’ve already checked the weather and my email and am almost through writing a daily “to do” list having been up since three and four and two, as Emma would say.

Emma stands up and bounds over to my side of the bed, beaming.  “Hi Mommy!” she says in a loud cheery voice.  I am reminded of that commercial where a schlubby looking guy gets up and says in a grumbly voice, “It’s time to make the doughnuts.”  Was that actually an advertisement for doughnuts?  I can no longer remember.  

“I’m getting up,” Richard announces.

Richard’s first novel is being published in the next 48 hours.  There’s been a whirlwind of activity, he received a five star review from a major book reviewer on Tuesday, there’s still a great deal to finalize before we actually have a physical book, his novel, in our hands.  It’s all very exciting and while all of this is going on there are the very real daily things that still need to get done.

“Gotta get back to work,” Richard says as he wanders into the bathroom, turns on the sink faucet and then begins talking to me again.  I cannot understand a thing he’s saying.  The faucet’s running, he’s at least 20 feet away with his back to me.  Seriously?   I so cannot hear you.   Emma is grinning at me like the Cheshire cat and now leaps into bed next to me, while deftly pushing Merlin aside.  This is all done with a certain matter-of-fact-sorry-kitty-don’t-take-it-personally sort of way.

I smile at Emma, reach down to stroke Merlin, lest his feelings are hurt.  “What?” I yell to Richard.

“Never mind.  I’ll tell you when I’m out of the shower,” Richard shouts back.

It’s not even five and one and five.  Or for those of you unfamiliar with Emma’s unique way of telling time, it’s not even five fifteen.  I check Emma’s arm and hand to see if the angry red bumps, the tell tale marks left from last night’s meltdown when she bit herself over and over again, have calmed down.  They have.  In another day they will turn bluish-purple and by the weekend will have acquired a yellowy brown cast.  She pulls her arm away and stares at me.  “Emma’s sad.  Emma want to go to the sprinklers.  I know.  I know baby.  But listen, you cannot bite.  You cannot go to the sprinklers.  Maybe tomorrow,” she says, nodding her head and frowning.

I talk to her about how she can go to the sprinklers after school today.  I tell her we are going to Nic’s school concert to hear Nic play his saxophone this evening.  She smiles.  She begins to hum the song Nic composed last year and played at a piano recital.  Her memory continues to awe.  She hums the exact piece note for note in its entirety.  When she gets to the end, she looks at the clock, “It’s five and three and one.  Do you want to make cereal and toast?”  She bounces off the bed and races into the kitchen without waiting for my reply.

Last night Emma and I went up to the roof before bedtime.  If you look just to the left of Emma’s face, you’ll see the Freedom Tower, more than halfway finished.

My latest piece My Fear Toolkit published in the Huffington Post

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Expectations and My Reluctance To See What Is

Posted on May 30, 2012 by | 17 comments

Emma’s sleepover came with some fallout.  I suppose that is to be expected. Emma had a blast , so what’s my problem?

My fear.  My expectations.  These are the issues that plague me.

I watched Emma burst through the front door.  I saw how she didn’t acknowledge or even look at the other little girl she’d just spent the night with.  I saw how in the photos and from Joe’s summary of those sixteen hours spent away, Emma and M. didn’t interact despite Angelica and Joe’s attempts to facilitate.  They co-existed.  M. seemed a little sad, I may be projecting this onto her.  But I wondered what it was like for her to have a sleepover with a child who barely acknowledged her presence.  And then I felt awful that I’d had that thought.

Emma was happy,  genuinely happy to have had her sleepover, in fact, seemed exuberant to be away from us for a night.  When she left Sunday evening, without a look back, I could see that Emma was ready for this.  Emma was ready for her little adventure, time spent away from her family.  This is as it should be.  This is what all children experience.  That initial flickering desire to venture off, to have experiences that do not involve her parents.  A flicker, which over time, will grow into a more steady, stronger, determined flame.  This is a good thing.

So why am I having a problem?  Because I have expectations.  Because I have worries and fears.  In addition to all of this, I project my own hopes and feelings of what specifically a sleepover means, onto her.  Emma’s sleepover was not the sleepover I had in mind.  A sleepover of two little girls connecting with each other, whispering secrets in each other’s ears, laughing and playing and interacting, holding hands and friendship bracelets.  But what little girl was I projecting that idea onto?  Certainly not Emma.

Eighth grade – I was invited to a huge slumber party at my “friends” house.  Unbeknownst to me several of the girls, maybe all of them, got up in the middle of the night and threw my bra into the freezer, much to their amusement and my horror, embarrassment and shame.  Shame because I did not require a bra, shame because I was singled out and didn’t fully understand why, shame because it felt mean and made me sad, but everyone else was laughing.  Laughing in a way that made me feel all the more isolated and alone.  Shame because I wanted to be included, often was included, but never felt that I really fit in.  They laughed, so I tried to laugh too, which made them laugh all the harder.  I remember.  I remember feeling so relieved when my mother came to pick me up.  “How was your sleepover darling?”  my mother asked.

“Okay,” I answered.  How could I explain?  How could I tell her about something that I hadn’t entirely understood?  How could I put into words that which I found confusing and oddly shameful?

“Did you have a good time?” my mother asked again.

“It was fine,” I said, turning my head away from her to stare out the window at the blurred landscape as we drove back home.

I am grateful knowing Emma will be spared this kind of “sleepover.”  I am grateful when I take Emma to one of the many playgrounds in New York City with various water features, and she pulls off her dress revealing her favorite two-piece bathing suit, without any self-consciousness.  Her belly prominently displayed for all to see, she tears from one water drenched shape to the next with gleeful abandon.  Emma is without inhibitions.  She is without embarrassment, she is without shame.  Female neuro-typicals could learn a thing or two from Emma.  I could learn a thing or two from Emma.

It is in those moments, at the water park, as I sit watching her that I come face to face with my perceptions, my expectations, my ideas of what should and should not occur in our daily interactions with one another.  I catch glimpses of the fallacy, the dishonesty of the words we so carelessly toss about.

“How are you?”  “Great!”  “How was the sleepover?” “Fine.”  “Did you have fun?”  “It was nice.”  “Are you okay?” “Yup, everything’s good.”

Even when we aren’t.  Even when it wasn’t.  Even when we didn’t.

My latest piece My Fear Toolkit published in the Huffington Post

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Emma’s Momentous Sleepover And How We Barely Coped

Posted on May 29, 2012 by | 11 comments

Joe and Angelica came to pick Emma up for her sleepover Sunday evening.  Emma, who had prepared her pink spiky backpack for this momentous occasion by packing: 3 hardcover books, her green furry monster and traveling companion Muzzy, a nightgown, her string (the old string with a few modifications is back!), her Cokie, toothbrush, floss, hairbrush, change of clothes, bathing suit, bathrobe and she insisted on packing her sheepskin slippers, despite my protests that it was too hot, (it was in the high 80’s.)

When Joe and Angelica buzzed, Emma ran to meet them by the elevator.  When Joe and Angelica then came inside for a moment, Emma, with her backpack on waited patiently as the adults discussed drop off times, sleeping arrangements etc.  At a certain point Emma made her way to the front door, waiting.  Another minute later Emma had the front door open and continued to wait, now outside our loft and in the hallway.  Finally, the adults, having concluded their endless conversation about logistics, food, and other important matters made their way to the front door.  Emma already out the door, never once looked back at Richard or me, but instead purposefully headed toward the elevator with the grim determination of one who is afraid her departure may be, at any moment, thwarted.

“Bye Em!  Have a great time!”  Richard and I shouted to her as she boarded the elevator.

Just as the doors were closing we heard a cheerful, “Bye Mommy!  Bye Daddy!”

And that was it.  She had left.  No kisses, no “I’m going to miss you,” no look conveying conflicted emotions, nothing.   And there we were.  Left to ourselves, looking at each other.  Then Richard stepped toward me and a grin widened on his face.

Oh come on, people, remember where you are!  This is a blog, not some sultry, titillating web site you just happened upon by mistake.

We went to dinner and the movies, feeling the joy of doing so without paying for a babysitter.  It was ecstasy!  We stayed up late, (oh stop it!) and slept in… until 6:30AM.

I actually was up at 5:30AM, but used the time to make some corrections to yesterday’s blog post and did some other work related stuff.  Eventually we took a long leisurely stroll along the High line and then returned home to await Emma’s return.

When Emma entered our loft, she barely looked at either of us, shot into her room, threw on a swimsuit and requested that she go to the sprinklers in her favorite park.

“Em!  I’m so happy to see you!”  I told her.

She grinned and then said, “Have fun at Angelica’s house.  Have fun with M.  Have fun with Oliver and Trouble!  (Angelica and Joe’s two cats)  Have fun in the sprinklers.  Now go to Seal park!”

That was it.  We never did get any more out of her.  She had fun.  What more was there to tell us?  It was good to get these photos from Joe, however, and somehow Richard and I made it through those sixteen hours, just the two of us, on our own, without any children, I don’t know how, but we did it.

Emma’s sleepover with M.

Playing in the sprinklers with M.
My latest piece My Fear Toolkit published in the Huffington Post

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

Posted on May 25, 2012 by | 10 comments

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

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