Tag Archives: autistic

The Beauty in a Conversation

Posted on July 13, 2012 by | 28 comments

Emma and I are heading out to Fire Island this afternoon with my friend, Bobbie.  This has been cause for great excitement as Emma has counted the days until we leave.  Last night, Emma and I had the following conversation.

Emma:  Go to take Bobbie at the beach!

Me:  Yeah.  Are you excited?

Em:  Yeah!  So excited to see Bobbie and Mina and Luca.  Going to go in the ocean.

Me:  Yup, we can go swimming and…

Em:  (interrupting) Going to go play in the sand.

Me:  Yes.  We’re going to spend the night.  We’re going to spend two nights there.

Em:  (Holding up her fingers) Three minus one equals two!  Having a sleepover with Bobbie at the beach.  Going to bring Cokie!  (Cokie is a scrap of what was once a blanket, measuring about five by three inches and is constantly getting lost leading Emma to panic.  We live in dread of this last large scrap one day mysteriously disappearing into the great dark unknown along with the rest of her blanket.)

Me:  But Cokie has to stay in your bedroom.

Em:  Cokie get lost!  Ahhhhh!  Who took it?  Somebody threw it away.  They threw it.  You cannot throw Cokie.  (All of this was said very quickly in an animated voice, it’s a kind of scripting, but it’s within a context in that Emma is expressing her fears and anxiety that her blanket might get mislaid.)  No, not going to bring Cokie into the water.  You can’t bring Cokie onto the beach, that’s silly.  Cokie might get lost!  Cokie will get dirty.  Ick!  Cokie has to take a bath!

Me:  You’re funny.

Em:  (Laughing)   No.  Not going to put Cokie in the washing machine!  It’s too little.  No, not going to put Max in the washing machine, he’s too big.  Max can’t breath.  You have to pull him out.  That’s too small!

Me:  Do you think we should wash Cokie before we take it to the beach?

Em:  Nah.  Have to gotta go.  Max came to the book party.  You hit Max.  You pull Max’s hair.  No.  You cannot pull Max’s hair.  You have to stop.  You can’t do that.  Max is hurt!  (This is another script, but it’s one she made up and it’s really a spoken memory of Richard’s book party celebrating the publication of his novel a month ago.  Max is a great friend and someone Emma adores.  When Emma really likes someone she wants to pull their hair and hit them.  She is still trying to sort out how to resolve some of these impulses while also connecting and making physical contact with another human being without hurting them.  We are working on this.)

Me:  Yeah.  That’s really hard, isn’t it Em?

Em:  Makes me so frustrated! Grrrrr!

Me:  (Laughing)  Do you feel frustrated now?

Em:  Nah!  Emma’s happy!  Going to go with Bobbie to the beach.  Going to have so much fun!

Just before I had this conversation with Emma, I was talking with my friend Ib.  She said, “It is easy to picture Emma talking more.  She can still be her if she does.  She will talk oddly about odd things that she blisses out about while twirling string, and walk away mid sentence.”

And I wrote back, “Yeah, and I’ll (removed explicative) love that!  Seriously love that!  Because I want to walk away in mid sentence half the time…”  Ib then wrote back “And frankly, in your family, it won’t be that odd.  Hehe.”

Which made me laugh out loud and filled me with so much hope and happiness with the thought that Em and I could converse the way Ib and I do.  And then Emma came home and I told Ib I’d talk to her tomorrow and Emma and I proceeded to have the conversation I’ve transcribed above.

Yup, there are little miracles happening all the time!

Have a wonderful weekend everyone!  The journey continues…

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Posted in Autism, language, scripting

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Fears Reduced to Nothing

Posted on July 10, 2012 by | 13 comments

Even though Emma and I traveled all day yesterday to get back to New York City, even though all kinds of things went through my mind as we spent the four-hour layover walking the entire length of the Denver Airport THREE times, in search of the ever elusive Nestle’s Chocolate milk, because no other chocolate milk will do as far as Emma’s concerned, even though I have a number of things I could say about all of that, I’m not.  Instead I’m posting these photos taken our last day and night in Aspen.

Because it was so wonderful to witness Nic and three of his friends being so great with Emma.  Because the last photo in particular piggybacks on, so beautifully to yesterday’s post about all my fears regarding Emma and neurotypical kids.  Because so often fears have nothing to do with reality.   And because I need to be reminded of that.

Emma on the Hunt’s trampoline 

A young buck in the field right outside my mother’s house

Emma,  the Hunt boys, Nic and Jack playing “Dead Man, dead man”

 

Emma, Nic (doing a flip), Ethan and Jack 

Emma was intent on jumping on the trampoline with Nic, the Hunt boys and their friend Jack, but none of them wanted to go.  It was already dark out, it had been raining, the trampoline was soaking wet, they were having fun rough-housing, it was unanimous, not one of them wanted to go.

Emma:  You have to ask.  Nicky, do you want to go on the trampoline?

Nic:  No, Em.  No. I don’t.

Emma:  Ethan do you want to go on the trampoline?  Yes?  Or No?

Ethan:  No.

Emma:  Say YES!

The boys start laughing.

Emma:   Yes, you do want to go jump on the trampoline.

Ethan:  Looking unsure, but smiling at Emma.  Well…

Emma:  C’mon, let’s  go!

And they did.  They all traipsed outdoors in the dark and they had a blast.  Emma was ecstatic.

And so was I.

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Posted in Aspen, Autism, friendship

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The Endless Parade of What Ifs

Posted on July 9, 2012 by | 22 comments

Emma and I are leaving this…

 

and returning to this…

without Richard and Nic.  I know.

Crazy, right?  Except that Emma is going to day camp.  A camp she adores and has been going to for the past four years.  A camp for neurotypical children, run by a man who welcomed Emma and urged us to let her attend four summers ago.  Each summer he gives me updates on how she is faring.  Joe will shadow Emma as he has the last three summers.  I will write and get work done for my business, before heading to Jerusalem for the Icare4Autism conference at the end of July.

This Thursday Emma and I are going to Fire Island to stay with my dear friend, Bobbie for the weekend.  She and her family have rented a house on Fire Island for the summer and invited us out several months ago.  Emma has been talking about going since April.  And while Emma is excited and can’t wait to go, I am filled with trepidation.  Because along with Bobbie and her two children, one of whom is Emma’s age, there will be another family too.  I have never done this, spent an extended period with a neurotypical family, forget TWO neurotypical families.  It will be just me and Em, with no one to help out if things start to go badly.  It is a testament to my friendship that I was able to accept Bobbie’s kind invitation.  I have spoken to her at length about some of my fears.  She has a vague idea of what I’m talking about.  But it’s vague at best.

What if the other children don’t include her?  What if they do include her?  What if she wants me to spend the entire time in the cold ocean?  What if she takes off all of her clothing and runs through the house naked?  What if she makes strange noises and whips her string around?   What if the other children make fun of her?  What if they say things to her that hurt her?  What if they pretend she doesn’t exist?  What if they talk about her in front of her?  What if I’ve turned away, even for just a second when this is done?  What if she wants to play “duck, duck, goose” and they tease her or laugh at her for wanting to?  Will I be able to remain calm if any of these things happen?  What if I don’t have the words to explain that they need to appreciate her?  What if I can’t find the right words to describe how amazing she is if they’d just put aside what they’ve been taught to expect from someone?  What if?  What if?  What if?

Why do I think in these terms?  Emma is Emma.  Let me take a page from her book of self acceptance.  She is who she is and who she is, is pretty f@#king fabulous.  I do not need to worry that Emma will behave in a cruel or manipulative way to another child.  I don’t have to worry that she will gossip or whisper behind another child’s back or knowingly exclude a child.  She will not bully or lie.  She will not play favorites or tell secrets.  Emma will not play tricks on any of the other children or make them feel badly about themselves.  It’s not in Emma’s nature to tease or ridicule.  She isn’t capable of behaving in hurtful ways to others.

I’d be lying if I didn’t admit to worrying.  Emma is different and truthfully, so am I.   I have never felt completely secure in these kinds of situations.  I have never felt fully at ease in groups.  I have always felt slightly apart from.  As though everyone else got the same script, but the script I was given was to a different play with different characters and in a different place.  It’s been this way, long before I had children.  I feel most comfortable with people who are a bit “quirky.”   One of the things I love about communicating with Autistics is that I don’t have to second guess anything.  If I don’t understand something I say that, I don’t have to pretend.  There aren’t any hidden agendas.  No one’s trying to socially outdo the other.  There is a directness and an honesty that I appreciate.  No one is going to talk about the weather or if they do, it’s because it’s somehow impacting them in a meaningful way.

My friend Bobbie and I have known each other for more than twenty  years.  We have been through a great deal together.  She’s one of those friends who asks questions instead of giving advice.  She has listened to me go on and on about Em and autism and she has followed Emma’s progress, and mine too.  She has been there for me, applauding me, cheering me on and when I’ve asked for it, given me her opinion.  When I think of her, an image of an extended hand comes to mind.  She is there for me.  She always has been.

So I’m taking a chance.  Whatever happens it will be memorable.  And who knows, we may even have a really nice time.  But regardless, I will have pushed past my comfort zone by trying something new and this time, Emma is leading the way.

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Posted in Aspen, Autism, New York City

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Losing Sleep, Autism and Strange Noises in New York City

Posted on June 19, 2012 by | 17 comments

I’m operating on about three hours of sleep.  The piece I rewrote about Simon Baron-Cohen and The Theory Of Mind for the Huffington Post was published yesterday evening.  I knew I’d get some opposing views.  I’m used to that.  I understand that by putting my thoughts out there,  people will and do disagree.  So irritating when people disagree with me.  Eye roll, sharp intake of breath.

When I began writing at the Huffington Post I submitted a piece about Emma and her interesting use of language.  It was not a scholarly piece, (none of my pieces are, it’s not what I write)  just some observations and thoughts I had.  Once the piece was published I received a couple of scathing comments, many of which were marked as “abusive” and were removed, but one that remains, was from a retired speech pathologist who wrote,  “A jewelry designer (author of the article) who has bizarre ideas about language development should be countered by an expert opinion.”   I imagined as she wrote that comment she was looking grim and making tsking sounds.  I felt as though I were back in first grade being scolded for not paying attention.

Another piece I submitted about Emma’s painting, a number of people made derogatory comments, which were removed.  One of those comments was,  (I’m paraphrasing here) Oh great!  Stupid references to Dr. Seuss, Autism and painting all in one sentence.  How is this news?  

News?  I was supposed to write a journalistic, investigative piece?  Shit!  Where was I when that memo got sent?   I thought I was writing a piece about the joy I felt watching my daughter paint.

It’s anxiety causing to get such contemptuous responses, but over the years I’ve developed a “thicker skin” though I’m so literal-minded that phrase strikes me as really creepy.  Still, in this last piece it is I who am attacking someone else.  And while I’m sure Simon Baron-Cohen wouldn’t lose any sleep were he made aware of my rant about his questionable test and the even more questionable conclusions he’s drawn, it’s not in my nature to attack others.  I don’t feel comfortable doing it.  Against my better judgement I submitted the piece anyway because I believe strongly in its message.

As I reiterated in a comment I made to another person’s response –  SBC  is presenting himself as an “expert” on autism. It isn’t as though he was the parent of an Autistic child, had a blog and wrote the occasional piece for the Huffington Post, while making inflammatory statements, which everyone could read, laugh, argue with and forget. He has made a career for himself, based on his academic achievements. His theories should and must be held to a higher standard. His words and ideas have tremendous power. It is irresponsible to be in such a position of power while basing ideas and theories on faulty tests with no consideration of the implications. I, too, could cite many examples of my daughter’s actions, which could then be used to (erroneously) support SBC’s various theories. That doesn’t make his theory correct, it brings into question my thinking.  I urge you to read Dr. Henry Markram’s alternate theory – http://www.wrongplanet.net/article419.html – I can find many more examples of Emma’s behaviors, which support his theory. The TOM theory is a dangerous one because of the way it can be used to justify the negative perceptions of Autistics. If someone has little or no empathy, we are much more likely to behave in a less caring manner toward them. We may insist this isn’t so, but there have been studies suggesting otherwise.”

As a result of all this I’ve paid the price by getting very little sleep.  Ask me about the traffic patterns on 7th Avenue between the hours of 2 and 4.  And exactly what was going on with that woman who kept shouting WooWoo at around 3:30AM?  Was she celebrating?  In the beginning stages of labor?  These are the questions plaguing me at the moment.

Emma making her silly face, which pretty much sums up how I’m feeling at the moment.

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Posted in Autism, Huffington Post, Simon Baron-Cohen

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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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An Empathic Debunking of the Theory Of Mind

Posted on June 12, 2012 by | 30 comments

Simon Baron-Cohen, the man who has single-handedly done more damage to the perception of Autistics than any other human being (though there are arguably a number of people vying for that title), depresses me.

I need to say that before continuing.

Simon Baron-Cohen developed the “Theory of Mind” based on the results from the now famous “Sally-Anne” test.  The Sally-Anne test, where the child is shown two dolls, is an example of dubious “science.”  Sally has a basket in front of her, while Anne has a box.  Sally, presumably made to move by an adult, which further complicates the test, puts a marble into her basket and leaves the room.  While she is gone, Anne takes the marble from Sally’s basket and places it in the box.  When Sally returns, the child is asked, “Where will Sally look for the marble?”  Only 20% of the Autistic children were able to correctly answer the question – Sally will look in her basket.

Emma, typically, when asked what one of her doll’s name is, will reply, “Doll” or “girl.”  This is just one example of Emma’s literal mind at work.  She is not wrong, her doll is a doll and yes, she is a girl.  To take away any other conclusion from her answer would be ridiculous.

Yet, from this “test” Simon Baron-Cohen concluded, “that the core problem in autism is the inability to think about other peoples, or one’s own thoughts.”

Except that his test did not take into consideration the level of anxiety, stress or mood of the Autistic participants at the time of testing.  Nor did it take into account the language issues, pronoun challenges or literal thinking many Autists have, which the test inevitably presented.  In addition Simon Baron-Cohen based his theory, which is taken by many as proven fact, on assumptions that the Autistic participants understood the question.  He then set about publicizing his theory, which inadvertently or not, is used by many in the neuromajority to abuse and mistreat the very people whom he categorizes as lacking empathy.  Does anyone else see a problem here?

When Emma was diagnosed I came upon the Theory of Mind paper early on in my research.  I remember thinking that this explained why, when any of us were upset, Emma seemed oblivious.  But as I continued along the road of educating myself, coupled with observing my daughter, I began to question his theory.  I read about Autistics who avoided looking in people’s eyes because it was too intense.  One Autist described it as akin to seeing into a person’s soul.  Other’s talked about how they could sense immediately upon entering a room, the various occupants emotional state and became so overwhelmed they would seek refuge in a corner, try to leave or would stim as a way to counter the intensity of what they were experiencing.

There are times when Emma will, with outstretched arm, put her hand out in front of her face like a shield.  Often it is done, I believe, as a response to the intensity of feelings, either hers or others or both, or as Jessy Park, Clara Claiborne Park’s daughter was quoted as saying, “It’s too good.”   Landon Bryce over on his terrific blog, thAutcast has a wonderful video of an Autistic artist, Tina, who talks about how she trained herself to look into people’s eyes because she paints portraits.  It is a beautiful video, as is she.

What struck me, after reading half a dozen articles and interviews by and with Simon Baron-Cohen, is the damage he is doing.  His most recent book, Zero Degrees of Empathy, (which I am not providing a link for on purpose) where he includes Autistics along with psychopaths and borderline personality disorder as examples of groups who lack empathy will further the suffering of Autistics.  For a man who claims Autists lack empathy, he is bizarrely unaware of his own lack of empathy.

For those who would like to read an opposing theory and one that seems much more in keeping with what I see demonstrated by not only my daughter, but the many Autistics I have had the honor of getting to know, read this interview with Henry Markram.

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Posted in Autism, empathy, Simon Baron-Cohen

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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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Posted in Autism, Parenting, Routines

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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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Posted in Autism, controversy, Parenting

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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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Posted in Autism, Parenting, Self Injurious Behavior

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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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Posted in Autism, friendship, Parenting

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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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Posted in Autism, Parenting, Sleepovers

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I Got To Meet A Unicorn Named Ibby

Posted on May 28, 2012 by | 16 comments

Celebrities and important people populate New York City in the same way Starbucks does, in other words, look hard enough and you’ll find one on every street corner.  But Sunday I had an encounter that was more impressive than running into a dozen A list celebs.  Sunday I met Ibby Grace.

Ibby, also known by her professional name, Dr. Elizabeth J. Grace,  Assistant Professor at National Louis University, is a terrific public speaker, wonderfully sarcastic, understands irony and rhetoric, has a sense of humor and is an extremely kind and compassionate human being, in a long standing relationship, a new mom to twins, and is Autistic.   If you believe the common assumptions about Autistics, Ibby is an anomaly.  According to the current “statistics” citing 1 in 4 Autistics diagnosed are girls, Ibby is even more unusual.  That she also displays qualities thought to be nonexistent in all Autists makes her, as she suggested with a certain degree of sarcasm, “a unicorn” or as a participant volunteered, “pegasus.”

Ibby spoke Sunday at the 12th Annual International Conference on Disability Studies in Education on Autistic and Female:  They say that’s rare, and so many other things.  She proceeded to dispel the many myths surrounding the little known and misunderstood segment of the human population – The Autistic Female.  In her talk she mentioned various theories including Simon Baron-Cohen, the creator of possibly the single most destructive theories regarding autism, The Theory of Mind and Mindblindness, which postulates that Autists are unable to empathize and his latest theory – The Extreme Male Brain.  I will not do Ibby’s talk justice by trying to represent it here.  Suffice it to say, you should have been there.

After the talk I stayed and chatted with a number of people.  As  Ibby and I walked together I told her how thrilled I was to meet her and other Autistic women who were beating a path, a path my own daughter may choose to one day walk down.  “You’ve found her people,” Ibby laughed.  I have and a formidable group of women it is.  Then she put her hand out and said, “Welcome to the tribe.”  The gloom and doom and horror I have grown used to feeling whenever I have attended any group discussion regarding anything to do with autism was in stark contrast to the joy I felt attending Ibby’s talk.  I think I may even try to go to other Autism conferences as long as most of the speakers are Autistic.

Ibby makes me happy.  She is interesting, smart, articulate, funny, doing what she loves and is one of those people who lights up the room.  It’s just the way she is.  Were it not for deeply ingrained societal restraints I would have physically jumped up and down upon meeting her I was so excited.  I think I did bounce a little on my toes when I went up to her after the talk had ended.

But I don’t think anyone noticed.

*An addendum to Sleepovers, Staycations, Sixteen Hours and Other Words Beginning With the Letter S – it turns out Oliver and Trouble are the names of Angelica and Joe’s two cats.  Mystery solved!  I should never question Emma.  She is always right.  I have to learn how to listen to what she’s saying better.

My latest piece My Fear Toolkit published in the Huffington Post

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Posted in Autism, Autism Acceptance, Simon Baron-Cohen

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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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That Pesky Issue of Death and The Desire For a Sleepover

Posted on May 24, 2012 by | 4 comments

“Have a sleepover with Susan and Peter?”  Emma mumbles.  It’s early.  I’m tired.  I  didn’t sleep well, blinding headache, and it’s 6:07AM.

“What time is it?” Richard asks in that groggy-first-words-spoken-in-the-morning kind of voice.

“Six ten,” I reply, optimistically rounding up, hoping those added three minutes will serve to soften the blow.  In case any of you are wondering, Richard is NOT a morning person.  Anything earlier than 7:00AM causes him tremendous pain.  I can hear Richard’s slow intake of breath.  I imagine I can feel his exhaustion.  No wait, that’s mine, never mind.

“I want a sleepover,” Emma says, more loudly this time in case we hadn’t heard her the first time.

I know why Emma is saying this.  Nic has been invited to spend the long Memorial Day weekend with his friend.  He’s leaving Saturday morning and won’t be home until Monday.  Emma overheard Richard and I discussing this.  Emma overhears a great deal.  Emma pretty much knows more about what goes on in our house than I do.  She’s got her finger on the pulse of what’s happening.  And she wants in.

My heart feels as though it’s in a vice grip and simultaneously I feel euphoric.  It’s that bizarre feeling of holding two opposing feelings at once.  This is a rough version of my panicked inner dialogue:   What am I going to say?  This is so great!  How do I tell her my cousins will not be inviting her for a sleepover at their house?  We’ve been through this before.  How do I explain why it is that her brother, Nic, gets invited to sleepovers all the time, but she has never been invited to one?  But she’s asking to have a sleepover, which is fantastic and heartbreaking at the same time.   What can I say that’s honest, but not so honest it will hurt her feelings?  How do I explain what a sleepover entails?  How do I explain the intricacies of sleepovers, that it’s not just sleeping in a strange bed and then coming back home, that there’s so much more to it?  Maybe I don’t need to.  Maybe I need to figure out a version of a sleepover.  Does she understand that I don’t accompany Nic on his sleepovers?  I think she does, but I’m not sure she cares.  

“How about this?” I finally say, measuring my words.  “How about we have a sleepover at Granma’s in June?”  I wait as she stares at me.  She doesn’t say anything.  It’s as though she’s thinking – are you kidding me?  That’s not a sleepover.  That’s a visit.  We do that all the time.  What, you think I don’t get that?  I smile at her, encouragingly.

“Sleepover at Peter and Susan’s.”

Oh boy.  “Um.  Well.  No.  We can’t do that, babe.”

“In August,” Emma says with the tone of one who has tired of the conversation.  There’s a finality to her voice.  Case closed.  There will be no more argument.  She turns her back to me.

Should I let this drop?  Just leave it alone?  But I know there won’t be any sleepover at my cousin’s house in August.  Shouldn’t I tell her that?  I’m reminded of friends of ours who have two, now grown, adult children.   This was when Nic, then four years old, wanted to know about death.  As in – would we die?  What would happen when we died?  Who would take care of him? –  Our friends advised us to lie to him.  “Just tell him you’re never going to die.  He needs reassurance.  He’s just a little kid.”

“But that’s dishonest,” one of us responded.

To which they replied, “Yeah, but if you both die, he’ll be worried about a great deal more than your dishonesty, trust me.  That will be the least of his concerns.”

So…  We didn’t take their advice.  Instead we patiently and carefully explained to Nic that everyone dies, but assured him that we were not going to die for a very long time.  Richard went so far as to say that he was pretty sure medicine would soon solve the whole “death problem” and was convinced that he, anyway, would never die at all, ever.  Eventually Nic, either tiring of our tedious and spurious claims, or just as likely, deciding our responses were so lame he couldn’t cope with them anymore, stopped asking us about death.

I thought about using a similar technique with Emma, but I’m pretty sure she’s made up her mind, regardless of what I may have to say.  She’s very determined.

Emma’s “sleepover” at our cabin

My latest piece My Fear Toolkit published in the Huffington Post

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Posted in Autism, Parenting, Sleep Issues

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Oddities, Quirks and Other Family Traits I’ve Come to Recognize

Posted on May 23, 2012 by | 15 comments

Let’s just say, for the sake of this post, that we all agree genetics play a role in autism.  (I know – many do not believe this, but let’s pretend we all do because otherwise this post will go off onto so many different tangents I may never get back to what I really want to talk about – inherited traits – and it will require a time commitment many of you may not have or want to give.  So let’s just pretend we agree.  Ten minutes, then you can go back to believing whatever it is you believe, which by the way, this post is not a criticism of, oh God, you see?  I’m already getting side tracked.  Suffice it to say, what used to strike me as alien about Emma, is, I now believe, a version of the genes that have been passed down to her.)  And that, as you’ve undoubtedly noticed, is one of the longest parenthetical sentences ever written.

I am going to keep this personal because I don’t have permission to review my parents various genetic traits, nor my husband’s, though I’m guessing he’d give me permission had I thought to ask before leaving for my studio this morning, but I didn’t and it’s too early to call my mother.  So this is going to be about things I’ve learned and see in myself that I identify with Em.  And by the way, this preface of over 300 words, is a perfect starting point because  I do not think in a linear fashion.  This is actually something I’ve been accused of, not in a oh-you’re-so-wonderfully-creative-in-your-weird-thinking kind of way, but more in a what-the-hell-is-wrong-with-you? way.  For more on non-linear thinking and autism, there’s a wonderful discussion on the blog Wrong Planet.

Sensory issues –  None of mine cause me tremendous pain as so many of Emma’s do, but I do have some.  One benign example is my auditory issues.  For a long time I thought I had a hearing problem because there are certain sounds I do not notice.  If someone calls out to me, but is standing out of my range of vision, I cannot hear them, much to the amusement of both Richard and my son Nic.  Until I get a visual and am able to see them both doubled over in laughter because they’ve been shouting my name for the past ten minutes while I, oblivious, continue to do whatever it is I’m doing, I have no idea anything is amiss.  My husband uses a ring tone on his cell phone which I cannot hear.  Suddenly he’ll start rummaging around looking for his phone and I’ll ask, “What are you doing?”

“My phone’s ringing,” he’ll reply, while I strain to hear his phone, only to hear silence.

I have a friend whose voice I cannot hear.  I literally have to put my head about three inches from his mouth in order to hear anything he’s saying.  I’ve had my hearing checked.  My hearing is all within what’s considered the “normal” range.

I have spoken before of my literalness.  There are certain jokes I just do not understand.  That in and of itself has become something of a joke in my family.  There’s a group of bloggers who participate in an ongoing “Special Needs Ryan Gosling” joke where they take a picture of the movie actor and then write something – like “Hey Girl, how about I deal with Joey’s sensory induced meltdown while you grab that bottle of wine I just opened for you.”  (I just made that up, but am not sure that would actually be a good one, because I don’t really get the joke to begin with.)  Not to be a total kill-joy here, but it’s not a joke I’m capable of understanding and I have to admit, I really wish I did, because all the other bloggers are having so much fun with it and I admit, I feel left out.  Reminds me of how I used to feel in high school.  Laughing along, but not really understanding what was funny.  Though I knew enough to not let on that I didn’t get it.  And I really do have a good sense of humor.  Really.  I do.  No.  Seriously.

For more than two decades of my adult life, I engaged in self injurious behavior.  My self injury was in the form of an eating disorder and in dermatillomania, also known as face picking.

I am obsessive and though I do not have OCD, (Obsessive Compulsive Disorder) I can be extremely obsessive and compulsive around a wide variety of things.  When I find something that interests me, often design related or subject matter, like autism, I become obsessive and will study and work for hours without realizing how much time has passed.  Jewelry design is like that for me and it helps that I have been able to disguise my obsession with it by turning it into a business.

In the past I have used words like alien and other in describing Emma.  But I haven’t found that thinking helpful.  As long as I see her as so very different from me, I abandon my instincts, my maternal knowing, my own quirks and feel almost constantly confused by so many of her actions.  When confused I rely on others who do not and cannot know my daughter as well as I do, to tell me what I actually already know.  Which isn’t to say that any and all advice isn’t helpful or is to be rejected, but more that I need to remind myself, Emma is actually a great deal like me in many, many ways and I need to trust myself more in knowing how best to help her by tapping into my own traits, obsessions and sensory issues.

I could go on and on about all of this, but the point I’m trying to make is that the alien analogy, rather than helping me help my daughter, has actually served to distance me from her.  When I am able to identify and tap into my own oddities I am better able to come up with strategies and ways to help her whether that is in her reading and writing or helping her tolerate frustrations or teaching her life skills.

What do you think?

Latest piece My Fear Toolkit published in the Huffington Post

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Posted in Autism, Parenting, sensory issues

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