Monthly Archives: May 2012

The Gift of a Molar

Like many Autistics, Emma has a multitude of sensory issues.  I’ve written before about Emma’s amazing ability to tolerate certain types of pain, particularly when it comes to her teeth.  The idea that she was suppose to present us with her still bloodied tooth in exchange for money from some unknown and dubious entity called the tooth fairy was a concept Emma found unpersuasive.  Go ‘here‘ for more on Emma’s teeth and our attempts to explain the tooth fairy.

Blisters on her feet are another example of Emma’s high pain level.   As a toddler I remember taking off her shoes, having spent the day running around and playing in various parks, only to see both of her feet had opened blisters rubbed raw so much so that her shoes were stained with her blood.  This was before we had a diagnosis and I can still remember sitting on the carpet in our hallway, her bloodied foot in my hand and thinking, how is this even possible?  Why wouldn’t she have cried?  That the pain must have been intense and unbearable seemed a given.  How she spent the entire day not noticing or worse, noticing, but not saying anything, was something I could not fathom.

Yet it seemed that the opposite was also true.  If Emma’s ears hurt from the changing air pressure, she cannot tolerate the pain and will cry out in agony.   The one thing I know without any doubt, is that my understanding of pain is very different from hers.  What I find mildly irritating can be the source of tremendous pain for Emma and things that would cause me to grumble and grouse to anyone within shouting distance are, for Emma, met with no comment.

This morning at 5:30AM Emma appeared in our bedroom.  She leaned over as I opened my eyes and placed something slightly wet and cold in my hand.  Then she stood upright and beamed at me, waiting expectantly.  “What is it, Em?  What did you give me?” I asked managing to pull myself into a sitting position.

Emma said nothing, she just stood there smiling.  I turned on the light and saw in my hand a shiny metal capped tooth.  “Oh Em!  It’s your molar!”

This was the molar that Emma had to be hospitalized, anesthetized and kept for six hours before she finally regained consciousness to have capped as she could not tolerate having the cavity filled in the conventional way.  This was the tooth that upon waking, Emma cried and tried to pry the metal cap off with her fingers while screaming, “Take it off!  Take it off!”  This was the tooth that whenever she smiled, the light would reflect off of it, a glistening reminder of the pain she had had to endure.

“Pulled it out!”  Emma confirmed, grinning proudly.

I know I shouldn’t have, but I decided to let her stay with us in our bed, even though it was far too early, even though we’ve been working hard at having her go back into her bedroom until it’s 6:30AM, even though by letting her stay with us, I knew I was undoing weeks of work.  But I couldn’t send her away.  She was so proud of herself and I knew that tooth, that tooth I felt a particular aversion for as it represented untold pain for Emma, had been barely loose just a day ago.  How she managed to wrench it from her mouth is something I am unable to truly understand.

I meant to take a photograph of it, but forgot in the rush to get ready this morning.  It sits, next to the other molar she yanked out of her mouth just last week, on my bedside table.  These are the only two teeth Emma’s ever given me.  New York City is littered with Emma’s baby teeth, carelessly tossed wherever she happened to be when she extracted them from her gums.  These two molars are little gifts, just in time for Mother’s Day, that I intend to find a special container for.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

Cobra aka Daddy

Emma began calling her dad, Cobra a few weeks ago.  When she first said it, as in, “That’s Cobra!” while laughing and pointing to Richard, I had no idea why she was calling her father a venomous snake.  It wasn’t until later when someone said, “Isn’t that the social worker in Lilo and Stitch?”  that the mystery was solved, or at least one part of the mystery.  Why she thinks Richard, in any way, resembles Cobra is something we are still pondering, though I have a couple of thoughts. (As usual..)

Cobra, or Cobra Bubbles, as he is known in the movie Lilo and Stitch is a social worker, though he looks more like he’s in the CIA, with his dark suits and dark glasses, which he wears regardless of whether he’s inside or out and is bald.  He is also African American, is huge and speaks in a baritone booming voice and is in a state of perpetual displeasure, which he expresses with lines like, “And in case you were wondering,” said while looking over his dark glasses, “this meeting. Did. Not. Go. Well.”

Emma loves Lilo and Stitch.  She mimics Lilo’s bratty, high pitched voice and recites whole sections of the movie sometimes to comical effect.  Such as when the upstairs neighbor’s kid was running back and forth early one morning, Emma looked up at our ceiling and said in a perfect imitation of Lilo’s voice, “Aliens are attacking my house!”  It was a hilarious moment.  Emma, being the ham that she is, loved that I was laughing so hard I could barely breathe.  So when Emma pointed to Richard last Sunday on the way to the number 2 train, and said, “That’s Cobra,” then pointed to me and said, “That’s Mommy!” we asked her why Daddy reminded her of Cobra.  She grinned and said, simply, “Cobra,” before weaving her arm through her dad’s and then mine.  The three of us walked that way as Emma spoke in Lilo’s whiny voice, “We’re going to go home now.  Take the number 2 train and then eat dinner.”

By the end of the movie Cobra has become very much the family friend and is no longer threatening to put Lilo in foster care.  On the contrary he is intent on keeping the family together and has become their protector.  Which, my guess is, where the association with her dad lies.  Daddy, the larger than life protector of the family, kind and loving.

Daddy aka Cobra (Bubbles.)

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

Autism and the Neuromajority

I am wading into murky waters with this post.  I know this, but I’m going to do it anyway…

I really dislike the word “neurotypical.”  It’s one of those words that has always bothered me because, in my opinion, it doesn’t really mean what it’s meant to mean.  Neurotypical is the word coined by many in the neurodiversity movement, (a word I like – neurodiversity – by the way, kind of like biodiversity, there’s no pejorative, underlying meaning) because it does mean what it’s meant to.  But I don’t think neurotypical goes far enough.  I understand that it was created as an upgrade and improvement from the word “normal” (a word which really, really bothers me.)  The word normal being completely subjective and arguably something none of us could really say we are if anyone is being brutally honest.  But neurotypical, while certainly preferable to “normal” just doesn’t do it for me.

Last weekend, Richard and I were talking about autism, and I said, “the neuromajority…”  Richard said, “I like that, neuromajority.  That’s good.”  Yup, these are the kinds of conversations we often have with each other…  He agreed with me that he didn’t like the word neurotypical either.   The word “typical” has a slightly positive spin to it, kind of like a private club.  Having always been unconventional (and proud of it) I’m not a big believer or fan of clubs, never have been.  The word neurotypical is also vague, open to interpretation, completely subjective and ultimately confusing.  I don’t like that.  So I started using the word neuromajority.  It doesn’t roll off the tongue as easily as neurotypical, but at least it is more accurate in that it means what it’s meant to mean.  Neuromajority – It is the neurological state the majority of humans have, neither good nor bad.

Flushed with pride in having come up with such a brilliant new word, a word I felt I alone had coined, it hadn’t occurred to me that others may have already used this word.  Until I began writing this post.  As I was writing, right around the end of the last paragraph, I suddenly thought – I should Google – neuromajority – and see if anything comes up.  There were three instances of neuromajority being used, one of them was a comment left on an interview with Temple Grandin for 60 minutes.  The commenter wrote:  “Like most of the neuro-majority you reached beyond her statement and arrived at the conclusion this means she’s faking her eye contact” and the other was from a blogger with the blog – 1uppitywoman where she writes:  “Asperger’s has complicated life for me only so far as the neuromajority bristles at people like myself because we’re different from them.”  The last was another comment left on the blog AspieWeb.  So I went from feeling pleased with myself for my tiny stroke of brilliance in having come up with a word I prefer to use in describing myself and others like me, to the humility of realizing I had NOT come up with this word all on my own, to indignation that only three sites came up where the word was used.  My thinking is, since it’s been used, then why hasn’t it taken off and been used by a great many?  After all it’s a really good word, isn’t it? (!)

So I’m putting it out there – does anyone else dislike the word “neurotypical?”  Is there a better word we can use?  What does everyone else think?  Or is all of this way too political and therefore weighty and fraught with unseen implications that I’ve missed?

Tomorrow’s post will be about Emma’s new name for her dad.

For my latest piece in the Huffington Post, click ‘here‘.

Sunday in Williamsburg with Emma

After Nic and Emma had their gymnastics lesson Sunday, we dropped Nic off in Williamsburg, taking the “blue A train with yellow and orange seats” much to Emma’s delight, (while disproving my theory that she prefers taking trains with corresponding seat colors) so he could spend the afternoon with a friend of his who lives there.  Richard, Emma and I originally had planned to go to the Metropolitan Museum, followed by a stroll through Central Park before ending up at the zoo, as per Emma’s request.  However it was suggested we walk to the East river and visit the thriving Williamsburg flea market before heading back into the city.

The day was lovely and as I’d never spent any time in Williamsburg I loved this idea and suggested we walk around and explore.  Richard was game and Emma, who really only cared about going to the zoo, was content to go along with this new set of plans as long as we found her some Nestle’s chocolate milk before we began our walk.  It was so warm that all of us shed our jackets within the first few minutes of walking.  Emma had a black fleece, which I helped tie around her waist.  She then shoved the unopened bottle of chocolate milk into the “waist” her fleece created, as though it were a gun being thrust into a holster.  Every now and again she would grab the sleeves of the fleece and tighten it around her belly, ensuring that the chocolate milk remain in position.  I wish I had a photograph, I can’t think now why I didn’t take one, it was such a powerful look and one she was able to carry off effortlessly.

For those unfamiliar with New York City and it’s nearby environs, Williamsburg, once occupied by large industrial companies such as, Pfizer, Domino Sugar and Standard Oil, was also a coveted resort for many of New York’s wealthy elite in the 1800’s.  In the early 1900’s it became home to Hasidic Jews escaping Nazi, Germany and much later to Puerto Ricans lured there by the abundance of factory jobs.  Williamsburg is now going through a gentrification, with hipsters and artists populating the unoccupied enormous factory buildings and loft spaces.  Though many artists have already begun moving east, unable to afford the rising rents in Williamsburg, it still retains a certain “hip” allure with almost everyone under the age of 50 showing off elaborate tattoos and unconventional hairstyles.

By the time Emma, Richard and I reached the East River, Emma enthralled with the notion we would take a water taxi back into Manhattan never once mentioned the zoo.  When I explained to her that we would only have time to wander along the piers before the water taxi arrived and would then have to head home she nodded her head and said, “Go on water taxi, then take number 1 train home!”

“Yes, except we can’t take the number 1 train, we’ll have to take the number 2 train.”

“Take the number 2 train,” Emma confirmed.

Emma was ecstatic when we boarded the water taxi and sat on a seat closest to the window.  “Mommy sit here,” she said, patting the seat directly in front of her.

“No, Em.  I’m going to sit next to you here.”

“Mommy sit here?”  Emma said looking slightly distressed.

I knew she wanted me to sit in front of her because she wanted to suck her thumb without any comment from me.  “It’s okay Em,” I said, before sitting down.

Another family sat directly in front of us, with two small children no older than three.  One of the little girls turned around in her seat to stare at Emma and then mimicked her by jamming her thumb into her mouth, just as Emma was.

When we arrived at South Seaport Emma said, “Go get Nicky.”

“No Em.  Nicky’s friends are going to drive him back into the city later. But we could walk a little bit and take the number 1 train.”

“NO!” Emma cried.  “Take the number 2 train.”

Which is exactly what we did.

“Hey Em.  This was such a great day.  Did you have fun?” I asked as we shot uptown on the number 2 train.

“Yes!  I had so much fun with just Mommy and Daddy!”

For my latest piece in the Huffington Post, click ‘here‘.

“Six and Three and Zero”

We are working with Emma on time.  For the last few weeks she has been waking at 5:30AM.  I’m just grateful she isn’t also waking us at 2:00AM.  It’s all relative.  She has an analog clock in her room and we’ve discussed how she isn’t to wake us until 6:30AM.  Two nights ago she appeared at exactly 6:30AM.  “It says six and three and zero,” Emma announced before claiming her place next to me in our bed.

This morning however she appeared at 5:30AM and when I said, “Hey Em.  It’s too early. Look at the clock. Do you see what it says?” she didn’t answer.  “Look Em.  It says five thirty.”  I sat up and pointed.  “You have to go back to your room.  You can come back when it says six thirty.”

“Six and three and zero,” Emma confirmed.

“That’s right Em.”

Moving very slowly, she wandered back to her room, or more accurately, out of ours.  When Emma reappeared later she said, “Make cereal and toast?”  Then she corrected herself, “Dadddy?  I’d like to make cereal and toast, please.  May I have some cereal and toast?”

After breakfast she ran back to find me.  “Mommy!” she said bouncing up and down.

“Hi Emma.  I’m coming out.  I just had to take a shower.”

“Mommy!  I miss you,” she said, leaning her head into me.

“Oh Emmy!  I miss you too.  Whenever I’m not with you, I miss you!”  I told her.

She beamed at me.  “I miss Mommy.”  Then she pointed at me and said, “Mommy and me,” she pointed to herself, “go into the living room together.”

“Yes.  I’m coming.  Do you want to wait for me?  I’m just getting my shoes on.”

“I’m waiting,” Emma said.

I live for conversations like this.  I take for granted so many things, little quick conversations I have hundreds of times throughout a day, and yet, this one with Emma will carry me through the day like nothing else could or would.

Waiting for her school bus.

For my latest piece in the Huffington Post, click ‘here‘
Anyone can contribute! To be a part of the change, contribute to the Autism Positivity Blog click ‘here‘

Imagine What it is Like to be Autistic

The last 72 hours has seen a whirlwind of activity regarding the Autism Positivity 2012 Flash Blog and those words “I wish I didn’t have Aspergers.”  It has been incredible to witness.  To recap  –  A group of bloggers devoted days of their time and energy to come up with and create the Autism Positivity Flash Blog.  They then reached out to all the bloggers they knew, asking for each to contribute something.  New contributions were posted every 15 minutes on the last day of April, with more trickling in after that. I don’t know what the total ended up being, but it was well over 115 contributions.  As a result of their efforts, a whole community of Autistics, Aspergers, Parents of Autistics and Parents of Aspergers were galvanized and inspired to come together in support of any Autist who has ever felt – marginalized, less than, misunderstood, ignored or alone – even if for only a minute.  It was an incredible show of strength in numbers, of people working together, of a diverse and vibrant community uniting and reaching out to another (anonymous) human being.

Yesterday, Genisa, the person who typed those words commented on the piece I’d submitted to Huffington Post.   Because the Huffington Post limits comments to 250 words, you have to break your comment down into segments and submit each segment, hoping they’ll be published in the order you submitted.  As both Genisa and I found out, this was not what actually occurred.  HuffPo moderates all comments that come in and because of the massive numbers of comments they are (I’m sure) quickly overwhelmed with content they cannot keep up with.  So Part 2 of my 3-part response was never published at all, and part 5 of Genisa’s comment wasn’t either.  It was incredibly frustrating and I felt somewhat horrified when I realized that people were going to read just the last part of a very personal comment and one which made me feel incredibly vulnerable to misinterpretation that I’d written in response to Genisa’s.  About four hours later the first part of my comment was eventually published, which still did little to mitigate my frustration.  (Someone on Facebook suggested those lost comments end up with all those random single socks that somehow never make it into the light of day between the washing machine and dryer.  I kind of love that!)

Genisa wrote in frustration – “I am noticing a pattern here. They are only posting the first and last of cont. posting. I had to post 6 posts to get all of what I wanted to say out. How can anyone understand what I said if all they post is the beginning and end of what I was trying to say? It is leaving out all of the details, the important stuff. This is how it is every day living with Aspergers. I tend to not ever get the whole message people try to tell me, because I am so focused on the details. But when most of it is left out, I just don’t get any of it.”

“This is how it is every day living with Aspergers.”  The analogy being drawn between the frustration of not fully getting everything someone is saying, whole chunks of  what is being said are erased, and trying to make sense of it all anyway, while being expected to respond was so powerful to me.  I thought –  What if it was this way when you tried to express yourself as well?  What if you had a whole idea, something you wanted to relate to another person, but then had to submit it (say it) in short segments, yet it came out scrambled and not in the right order with some of what you wanted to say not coming out at all?  What if this was your constant experience in attempting to communicate with others?  Imagine if every time you had a conversation with someone this was your experience in both receiving information and giving?  Imagine how incredibly frustrating that would be.  Imagine if this happened not once, when you could shrug it off knowing that it was a one time annoyance and while irritating not an ongoing problem, but each and every time you spoke.  Imagine that your experience of communicating was to have people routinely misunderstand you or respond to the last part of what you’d said without hearing or understanding the first part.  Imagine if when people spoke to you, you lost portions of what they were saying.  Imagine what it would be like to ask them to repeat themselves and have them lose their patience with you.  Imagine if you were scolded, ridiculed, called names and punished for not giving an appropriate response.  Just imagine how that would make you feel.

Can you imagine?

For my latest piece in the Huffington Post, click ‘here
 Anyone can contribute!  To be a part of the change, contribute to the Autism Positivity Blog click ‘here

For Genisa

Someone commented on the Huffington Post piece I wrote – (I hesitated printing it here, because I don’t want you to feel “outed” but I also didn’t want to not mention it because you’re reaching out and the Letter to You was in fact to you and anyone else who feels as you do.)

So Genisa, I hope it’s okay to reprint the comment you left on the Huffington Post here in it’s entirety so that others may find you and reach back to you.

Genisa wrote:

“Thank you for the kind words. I didn’t realize anyone can see how you get to a blog by what you type on Google or on the blogs searches. I did type in that phrase a few weeks ago around April 7th. I would feel bad to think I made someone else feel sad by what I was looking for. I was trying to find others that felt the same way or to read something that I could relate to that would help to make me feel like there was hope, beyond the hopelessness I was feeling and still do feel. I feel so alone because of my inability to socialize appropriately, effectively communicate (especially verbally), and how I always say the wrong thing and make everyone angry at me. I’m an adult, I’m a female and I have Aspegers. I’m invisible to much of society.  I love volunteering, but for some reason others don’t want me to help out.  It really hurts to feel rejected by everyone, even within a group that should understand you because they have children on the autism spectrum themselves.  I want so much to see why I am not accepted and to be able to change it, but I can only change so much.  We do have feelings and we do have abilities if people would just see past our difficulties.”

I then responded with a very long reply,  one I now regret having written as I had to submit it in three parts due to HuffPo’s policy of a 250 word limit on comments.  As of this writing they’ve only published the 3rd part, which is a little horrifying as my words will be taken out of context and people may think I am drawing parallels between addiction and eating disorders and autism, which I AM NOT!  I’m not sure where the first two parts went, but if you just read the last part of my reply, it won’t make any sense or if it does, my guess is the wrong conclusions will be drawn, so I’m going to try to respond in full again here.  I didn’t copy my response first before submitting it, so this response will be slightly different.  Please, please refrain from drawing conclusions and judging my response until you’ve read my full reply and even then do keep in mind I am speaking of the feelings which may or may not be shared and not the circumstances.   Here goes…

Genisa!  I am so glad you reached out and commented.  If you haven’t already gone to the Autism Positivity 2012 Flash Blog, do.  Because of those words typed into Google, you galvanized and inspired a group of bloggers to create the Autism Positivity Flash Blog.  I don’t know how many people have contributed at this moment, but I do know as of yesterday morning over 115 people had written a reply to your words.  Those replies are from Autists, Aspies, Parents of Aspergers and Parents of Autists.  Over 115 people, Genisa.  You are NOT alone.  Go to the flash blog read the responses from people, most of them have blogs, go to their blogs and reach out to the ones that speak to you.  Many will respond.  You have found your people!

When I was in my 20’s I was suicidal.  (This is not something I often talk about.) I felt utterly hopeless, I had an eating disorder, was bulimic with anorexic tendencies that I could not contain or control, my life revolved around eating, puking, how much I weighed and where and what I would eat next, all as a way to quell my feelings of self loathing.  To someone who’s never had an eating disorder it must sound completely insane.  And, in many ways it was.  I felt horrible about myself, I hated who I was.  And I assumed everyone else felt the same about me as I did. I was unlovable.  Of that I was sure.  Please know that I am in no way equating my addiction and eating disorder to autism.  I am simply describing the feelings of isolation and sadness that can be common in both.

It took a long time for me to get the help I needed in order to stop.  But once I found people like myself, (and this is where the similarity in our stories lie) I was able to see, finally, that I was NOT alone.  I remember thinking  it couldn’t be true.  But it was.  There were hundreds and hundreds of people, in every city all over the world, some were suffering just as I was, others knew what it was to suffer, but had moved beyond those painful feelings.  That was the first step out of my personal hell and into another way of living.  A way of living where I could look at myself in the mirror and finally, finally like what I saw staring back at me.  Over time, with a great deal of support, I was able to begin behaving in ways that were honest and true to myself.  I was able to slowly stop trying to please all those other people that I felt condemned me, saw me as a failure, as a “bad” person.  And now, (I’m in my 50’s) my life is better than I ever could have imagined.  I have a wonderful husband who knows me and loves me exactly as I am, who loves me even when I’m angry, sad, irritated and feeling grumpy.  I have two beautiful, amazing and unique children, one who is considered neurotypical and one who is autistic.  And I am a very, very happy human being.  But thirty years ago, I was not.

You are beautiful, Genisa.  Let us love you until you can love yourself.  (Someone said that to me early on in my recovery from bulimia – I had no idea what they were talking about and I didn’t believe them, anyway.  But they did no matter what I said or felt they loved me and eventually I was able to too.)  Reach out as you have, again and again, find those you feel comfortable talking to, develop a relationship with them.  You are not alone, Genisa.  You are so not alone.  And you ARE beautiful.  Please reach out to me anytime.  I, like so many others, am here.

For my latest piece in the Huffington Post, click ‘here
To contribute to the Autism Positivity Blog click ‘here

The Language of Music

Sunday morning Emma wanted to listen to music and dance.  There was nothing extraordinary about this, except that her ipod wasn’t charged and Richard’s iphone was with him in the back where he was still asleep.  Both of these devices hold Emma’s favorite songs.  However, Emma picked up my iphone, a poor and unfamiliar substitute, but she was in desperate straits and realized this was not the time to be picky.  “Mommy?  Can I listen to Mommy’s iphone please?”  Emma asked.

Fortunately I have a number of Gwen Stefani albums programmed in.  It took no time for Emma to find one she liked, which I’d never heard before, Hella Good.  “You hold me like I should so I’m going to keep on dancing.”  It’s got an electronic sound infused with a great beat, blending rock and funk and makes you want to dance.  Which was exactly what Emma proceeded to do.  When the song began Emma got an intense look in her eyes, a look of concentration and focus.  I knew she knew I was watching because she looked over at me in the middle of a particularly complicated set of twirls with her arms raised high, her new string (I call it her starter string as it has no tape on it at all) she held in her right hand and twirled as the tempo picked up.  Emma went from twirling slowly to adding her head to the swirling movement, as her hand twirled the string, her upper body moved from side to side as she spun around.  The bass line reverberated and Emma suddenly thrust both arms up toward the sky and threw her head down while she spun.






This is how all of us would dance if we could.  Emma’s body, the expression on her face, the way she moves, the string extended out from her hands as though it were part of her.  She raised one arm and twirled, faster, her hair fanned out, her nightgown billowed around her ankles. Emma incorporated the music into her being, it was a part of her, it was her language.  She had taken it and made it her own.
For my latest piece in the Huffington Post, click ‘here
To contribute to the Autism Positivity Blog click ‘here

*A quick aside about Emma’s “string.”  After she covered it in red duct tape, she then covered just one end in purple duct tape and then left it in her brother, Nic’s room.  When she reappeared from her own bedroom, she was carrying two pieces of this new string.  I asked her what happened to her old string and she said, “No more.”