Tag Archives: Parenting

“I’ve Got the Moves Like Jagger”

Posted on March 15, 2012 by | 7 comments

This morning, Emma turned on Maroon 5’s Moves Like Jagger featuring Christina Aguilera.

It began like this…  (By the way, the turquoise thing Emma is holding is her string.  It’s a work in progress.  Every few days she adds more duct tape to it.  Pretty soon she’ll be able to use it as a snowboard.)

and then she did this

Which turned into this

and then this

“I’ve got the moves like Jagger”…

and she did and she was…

It was beautiful.

In it’s purest form – joy.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

7 Comments

Posted in Autism, music, Parenting

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The Evolution of a Perception

Posted on March 14, 2012 by | 18 comments

As I wrote yesterday’s post about Emma’s progress in the past year, I realized how much my perceptions and views have changed since beginning this blog.  When Emma was first diagnosed I cycled through a series of emotions fairly quickly.  Some, like guilt, grief and anger hit me with a violence that took my breath away.  Others ebb and flow, while still others, like acceptance, came more gradually, but all of these things continue to change.  My ideas about autism, what that means to Emma and to us have changed.  I no longer believe there is a neuro-typical child named Emma hidden beneath guaze like layers of autism.  A child who, if we could just find the magic thing that would remove the autism, would emerge, intact, speaking in beautifully, articulate sentences, a child who would suddenly converse with us as though all these years had been silent practice for her grand debut.  I do not believe we can extricate Emma from her autism.

I have gone from thinking it was wrong for me to slap such a potent label on her, that it was kinder, gentler, more empathic to say – my daughter has autism – than to use, the more blunt and direct, “she is autistic,” to the question I now find myself continually asking – what would she say, if she could?   I don’t know.  Until she tells me, I cannot know.  But I won’t stop trying to find out.

In my search to understand Emma, I have found voices, and there are dozens and dozens of them out there, autists who, now in their 20’s, 30’s, 40’s and 50’s have blogs where they articulate what many cannot say with spoken language.  These are the so called “high functioning” autists who can communicate, some not verbally, but who have found ways to communicate through typing and other forms of communication.  Their opinions, their voices, often poetic, at times angry, despairing, brutally honest, always insightful, are making themselves heard through their blogs.  Finding these sites has been akin to learning there is a vast alternate universe.  There is so much I did not know, do not know, but want to learn.  Over the course of the past eight years, with the sole intention of helping my daughter, I have done almost every single thing many speak out against.  I didn’t know.  I thought I was fighting for Emma.  I thought my focus on a “cure” was a good thing, the noble thing, the thing that would release her from the bondage of autism.  It never occurred to me that my focus could be perceived as a kind of bondage in and of itself.  By the way, I am not beating myself up over this, or more accurately am trying hard not to, but am doing my best to listen and learn.

I know I’m wading into tricky territory here, with many differing opinions about “cures” and how that word is negatively perceived by those on the spectrum, and I don’t want to get into the semantics of it, only to suggest it is a dialogue that is important.  It is a dialogue I am trying to understand.  I want to understand.  One I hope I am coming to understand.

The abuse, the prejudice, the cruelty all of these austists have endured is staggering.  One of my favorite blogs, by the incredibly talented Julia Bascom, called Just Stimming is filled with such pain.  She writes so beautifully and with such honesty, I read her words and feel overwhelmingly grateful for her voice.  E. is another such voice with her blog, The Third Glance.  Then there’s Landon Bryce, who’s blog ThAutcast is peppered with youtube videos of himself talking.  Provocative,  passionate, he is always interesting and someone I would love to have a conversation with.  There is LOVE-NOS, a group blog with three authors sharing their views and thoughts, one of whom is Julia Bascom. Another group blog, Wrong Planet describes itself as – “a community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.”

The point is, these sites are educating me in ways I could not have imagined.

Someone named Kathryn commented on another blog:  “Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)

1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.

2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.”

I aspire to be the parent described in #1.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Emma during gymnastics last Sunday


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Posted in Autism, Parenting, special needs

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Crocuses, New York City Firemen and Emma

Posted on March 13, 2012 by | 5 comments

As Richard and I revel in Emma’s affectionate embrace, New York City is experiencing an extraordinarily, early spring.  Purple, yellow and white crocuses are peeking out from mounds of dirt in great bursts of color.

This weekend the weather hovered around 60 degrees, today it’s suppose to go up into the 70’s.  The firemen, always good indicators of the temperature outside, across the street from our loft, are wearing shorts.  People are smiling, daylight savings time is in effect and this morning Emma was still asleep when Nic and I left the house.  Short of pinching myself to make sure this isn’t all a dream, as we waited for Nic’s bus to arrive, I couldn’t help but wonder – What’s going on around here?!

In addition to Richard’s beautiful post from yesterday, Emma is making progress in countless ways.  So I’d like to take a moment here to take stock, a kind of inventory gathering of this past year, to highlight how far Emma has come.

One year ago, Emma was struggling with forming the letters of the alphabet.  (I’m not kidding, I just went back and looked at my old notes.)  Today Emma is reading at a first grade level or higher.  In addition, Emma is writing and typing full sentences in answer to questions posed.  Emma knows more than 200 words by sight, she understands punctuation and uses a period, question mark and comma appropriately.  Emma knows to use an upper case letter when beginning a sentence both when writing by hand and when typing.  Emma is learning to use the past, present and future tenses when speaking, writing and typing.  Emma has made a massive leap forward in her use of the correct pronouns.  In addition (no pun intended) she is able to write simple math sentences, adds and subtracts 1, 2 & 3 up to the number 30.  Emma loves doing mazes and connect the dot pictures.  Emma continues to enjoy favorite picture books, but is now reading them herself!  She is no longer simply flipping through the pages, but is actually pointing to the words and READING!  I know, I just said that, but I find this really, very, very exciting.

Emma’s greatest deficit is in her expressive language, but we have been working on that through Dr. Blank’s “Step into Stories” program and through a number of other exercises and work we are doing with her.  Emma is working with Joe after school for a solid two hours and is able to attend during that entire time, with just a few two to three minute breaks throughout.

For the past three weekends, we have taken both children out to brunch at a different restaurant each time and Emma has sat and eaten food from the menu.  Any idea how exciting that is?   We live in New York City, after all.  People here eat out more than they do in, but for us, it’s exhilarating.  She sits in her chair, waits for the meal to arrive, engages with us, and enjoys herself.  Eating out together as a family was not something we have, up until now, been able to do.  One year ago we were having to pack a separate suitcase with the foods Emma would eat whenever we traveled.  Going out as a family to a restaurant was not something we even considered doing.  Emma has slowly expanded what she will eat.  This past Sunday Emma ordered apple juice and made no fuss when it arrived in a tall glass with a straw.  A year ago, not only would she not have ordered apple juice that she was unfamiliar with, but had one of us ordered it, she would have refused to even take a sip without a great deal of protest.  This is the same child who would spend an entire day refusing to drink or eat anything, if it was not familiar and known to her.

In gymnastics Emma is beginning to be able to perform a cartwheel that actually resembles a cartwheel.  She is able to do a hand stand, does jumping jacks on the trampoline and has learned how to touch her toes during the stretching period.  I know, all of this sounds pretty rudimentary,  but for Emma these are monumental leaps forward.

As Richard so eloquently wrote, Emma spent Sunday walking with us, not running ahead, there were no grunting or squealing noises, no sudden bursts of arm waving while jumping about, just walking, arm in arm, sometimes reaching for one of our hands, sometimes stopping to give one of us a hug.  There was a great deal of laughter, playing and interacting while Richard and I floated along on a cloud of joy and gratitude.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book


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Posted in Autism, New York City, Parenting

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Grappling With The Right Thing To Do

Posted on March 9, 2012 by | 1 comment

When Emma was first diagnosed she was still two years old.  The supervising ABA (applied behavior analysis) therapist from the agency who provided us with Emma’s early intervention program was a huge imposing man with a beard.  During one of her more difficult sessions, he took Emma into her bedroom where he told me he needed to have me not intervene as it would only make matters worse.  I was told that she needed to learn she must comply or she would never be able to progress.  I was told that no matter what, I was not to enter her bedroom.

As her screams grew louder and more desperate I huddled in the hallway against the wall to her bedroom, confused, horrified and angry and wept.  It was a form of torture, listening to her screams.  As the minutes wore on I wavered between the instinctive need to protect my daughter and the desire to do what would prove best for her.  The problem was, it was not clear what the right thing to do was.  If I went in and rescued her, according to the therapist, I would jeopardize all the hard work they had up to that point accomplished, reinforcing the idea that screaming would get her out of doing any “work” and if I didn’t intervene I had to sit with the knowledge that I had allowed a complete stranger to traumatize my daughter.  These are the kinds of episodes we parents replay in our minds, with new ones constantly being added to the queue.  Did I do the right thing?  Should I have stopped him?  What sort of long term trauma did I subject my daughter to?  If I didn’t stop him, if I allowed these sorts of sessions to continue was I not an accomplice in harming my daughter?  Was the therapist correct?  Would the rigorous ABA program we fought so hard to implement have worked had I not doubted it so much?

As it was, I did not intervene that day.  However, months later during yet another session when Emma cried and screamed with the therapist, while sequestered in her bedroom, I finally did.  I was told by the therapist that it was my behavior that was causing Emma to not progress with her ABA program.  I was told in no uncertain terms that the therapist (whom I liked) could no longer work with Emma because I wasn’t sufficiently supportive.  Later that day I received a call from the head of the agency telling me they would no longer provide services for Emma because I was too difficult to work with.  The year was 2005 and in New York City there were few other options.  ABA therapy was considered the gold standard, the only scientifically “proven” methodology that worked with children on the spectrum.  We had fought hard to obtain 35 hours a week of it for Emma.

The point is, whatever the methodology you employ with your child, there is no way to know whether it will help.  Uncertainty is part of parenting.  With a child on the spectrum that feeling of uncertainty is heightened and more loaded, the stakes feel so much higher.  Are we doing the right thing?  Will this help her in the long run?  What will do the least amount of “damage” and help her the most?  We neuro-typicals cannot know what it is to be autistic.  We cannot speak for people on the spectrum.  All we can do is hope that the decisions we make are going to help our children so that they can one day speak for themselves.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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What the BOE and Preppers Have in Common

Posted on March 7, 2012 by | 8 comments

Today is our IEP meeting with the BOE.  Perhaps the only organization using more acronyms than the BOE (Board Of Education) are Survivalists.  How and why do I even know about such a group, you might ask?  Because my husband, in his thorough research for his almost finished YA novel (it is so good, so wonderfully written, so exciting, it will turn YA literature on its head) has told me all about them.  Survivalists or Preppers as they are also known, are preparing for the worst.  Don’t ask me anything more because that is the extent of my knowledge regarding Survivalists.  However I am a bit chagrined that the name “Survivalist” has been taken by this group as it seems an appropriate name for our children on the spectrum, though if they rejected it, I suggest we parents adopt it.

But I digress… this afternoon we have to go to the BOE and meet with three or four members of their staff to go over Emma’s IEP (individualized education program) mandated by the IDEA (Individuals with Disabilities Education Act).  The point of the IEP is to help teachers and related service providers understand the specific issues, challenges and strengths of each specific child, with specific written goals for each and every child with a disability.

This is how the NYC DOE (Department Of Education) describes the IEP: “An Individualized Educational Program (IEP) describes the special education and related services specifically designed to meet the unique educational needs of a student with a disability. An IEP is the guiding document for a student’s educational program. It includes all of the goals, objectives, present levels of performance and related services that are recommended for the student.”

The first time I went to such a meeting, I was very excited, assumed the BOE cared about my daughter and her educational needs, wanted what was best for her, would urge for the best possible services, would work with me to get those services, suggest the most appropriate placements, write up a detailed and suitable IEP for her, etc.  To say that I was disappointed does not in any way express what actually transpired.  I left that first meeting surprised by my naivety, realized that of course this was a huge bureaucracy, bound by law to write an IEP, underfunded, understaffed doing the best they could with limited resources in a very imperfect world.  In addition to all of that, one sits at an oval table with complete strangers most of whom have never met Emma.  One person at the meeting will have done an assessment of Emma for 30 minutes, several months earlier.  Emma will have been one of hundreds of children they saw.  From that 30 minute “assessment” a report will have been written and all parties from the BOE will have that report in front of them, which they will refer to during our meeting.  This is a sample from last year’s report:  “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.”

When I read that report last year, not only did I not recognize Emma, but I wept for this child that I did not know.

During the IEP meeting the staff from the BOE will not use the words “sensory issues” in fact, the word “sensory” will not be uttered in any context.  Nothing will be mentioned about the necessity of having a sensory diet, that in order to focus and attend to academic work Emma will need certain sensory supports.  Richard and I will mention these things.  We will insist that they be included in her IEP.  We will go on at length regarding her need to be allowed a break so that she can move between tasks, we will insist that a compression vest, a slanted writing board and various other sensory aids be added to the report.  To be blunt – we will be a pain in the BOE’s ass.  They will be relieved to see us leave.  This is not our intention.  Our intention, our sole purpose during this meeting is to ensure an accurate and appropriate set of goals are written for our daughter.  Even if no one from the BOE ever reads them again until our next meeting next year, we will leave knowing that we did our best for our daughter.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, Education, sensory issues

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Chest Hair, Zombies and Laughter

Posted on March 6, 2012 by | 8 comments

A friend of mine in describing a man we both knew who had a surprising amount of chest hair, so much that it resembled ivy growing up a trellis and a love of wearing white tank tops, exclaimed, “He looks like a chia pet in a wife beater!”  It was one of those moments when I laughed, the kind of laughter where you are actually doubled over, gasping for breath, that kind of laughter.  Those words were said to me over 15 years ago now, yet I still remember it as though it were yesterday.  I know, it’s not nice to make fun of people, but these are tough times, calling for tough measures.  I’m on the front lines here, so this morning I decided to pull out the big guns.

Can we all agree?  This is nothing short of hilarious.  I don’t know which is more troubling, the fact that Donald Trump has insisted on wearing his hair this way for decades or the fact that I felt the need to actually go on the internet and download this photograph.  Like I said, these are desperate times, requiring desperate measures.  And might I just add?  This man has done me a tremendous service.  I cannot look at this photograph and feel sad at the same time.  It simply is not possible.

Yesterday, while talking to Richard, I disagreed with him.  (It doesn’t matter about what, and anyway I can’t remember.)  He began to argue with me about why I was incorrect.  I then raised my voice and accused him of going “global” and that this was a specific comment, not a broader condemnation of everything he’d just said.  Richard looked at me with a look of annoyance mixed with amusement and then gave me the finger.  He held it there, about four inches from my nose.  “Get that thing out of my face or I’m going to bite it,” I said.  But he didn’t move his finger for a few seconds, just to get his point across.  I looked over at him and then we began laughing.  Because really, what else can one do?

I don’t pretend to know how Emma experiences the world.  I cannot speak for her.  I can barely speak for myself.  But I am grateful that she, too, finds arbitrary and seemingly random things funny – like zombies and Winnie the Pooh and her friends Charlie and Gabriel and Justus from her school.  I am thankful for those things and the people who make her laugh.

“Who’s the best girl in the whole world?” I asked her this morning when she came into our bed and snuggled up against me.

“I am!” she shouted.

Yes, she is.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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The Fallout

Posted on March 5, 2012 by | 4 comments

I was thinking about how we had to take Emma to the hospital last week because she was complaining about a pain on the right side of her abdomen.  Once there they took an x-ray, told us she was constipated and that we should give her an enema.  Everyone became focused on the “constipation” issue, us included and while I wouldn’t agree to the hospital restraining her and giving her an enema no one said much about the fact that she had a fever and that the pain she was complaining about may have been due to the stomach flu.  That night when her fever spiked, her body burning up and the following morning when she threw up, it was pretty evident that in fact she did have a case of stomach flu, just as her brother had three days before.  But the doctors at the hospital didn’t mention the flu, even though we told them her brother had had it.

What happened in the hospital is an example of how quickly things can derail with an autistic child.  The idea that an enema was considered an appropriate next step for a child with a fever, complaining of a stomach ache who’s brother just had a bout of stomach flu, seems somewhat incredible now looking back.  I don’t know how many people have experienced an enema, but it is not pleasant.  When I was in labor with Nic, I was given one to speed up my contractions.  I was in labor for 38 hours.  I was determined to give birth naturally and it was thought that the enema would help.  I have no idea if it did, but it was both horrific and memorable.  I no longer have any memory of being in any real pain during labor, though Richard assures me I was, but I can still vividly remember the enema.

Emma hates enemas.  She has had many of them.  The minute the word enema was said, she began to cry.  The idea that we were going to allow a group of strangers to restrain her as she tried to fight them off (all the while with a fever and the stomach flu) seemed, if not abusive, damn near.  I just couldn’t give the okay.  I couldn’t.  But then once home I began monitoring her bowel movements and that didn’t seem like a good idea either.  There is so much talk, articles and books have been written about the relationship between autism and GI tract issues.  The whole leaky gut theory adds to the concern that if allowed to continue constipation may even cause neurological damage.  With this in mind the word “constipation” when applied to an autistic child feels loaded and it is difficult to step away from the feelings of panic long enough to gain any perspective on what is happening.

Last night, having, until then, somewhat successfully tamped down my feelings of uncertainty, worry, concern, rage and guilt (there is always the guilt lurking) I came in touch with all those feelings and more.  But instead of feeling each of these things, initially I just felt guilt.  Tremendous guilt that I had begun monitoring her trips to the bathroom, that I hadn’t seen right away that she had the stomach flu, that I had allowed the doctors suggestion that her pain was due to constipation (a hot button for us, as it was such a daily concern for so many of her early years) to override all the other evidence, this was my crime.  And last night, I became judge, jury and prosecutor, the only thing missing was my own attorney.  I forgot to bring along someone to defend me.  Years of blame, years of condemnation came bubbling up as though they had always been there.  As though I hadn’t done any work on any of this, as though blaming myself for Emma’s pain would somehow lessen it for her.  Let me take her pain.  Let me bear the brunt of it.  If only I could, I would.  If only this was how it worked.  Give it to me, just please, please remove hers.  She’s just a little girl.  I can take it.  But it doesn’t work that way, does it?  I can’t take her pain from her.  I have held on to guilt, the feeling that somehow I am at fault for Emma being born autistic, for the pain that causes her, it is somehow my fault.  A kind of mental contortionist, I have found ways to always blame myself.  I thought I had gotten better at this.  I thought I had let go of most of it.  But last night showed me, I have not.  It’s all there, waiting.  Waiting for the first sign of weakness.  This is the fallout.

For more on our journey through Emma’s childhood marked by autism, go to:  Emma’s Hope Book

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Posted in Autism, Constipation, Parenting

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Bliss

Posted on March 2, 2012 by | 3 comments

My friend Kelly sent me this link to a post entitled The Obsessive Joy of Autism.  The piece is written by Julia who is on the spectrum and one of three contributors on a blog, Love-NOS.  I have only begun to read some of the posts, but it’s a terrific blog regarding autism and being autistic, but also about being human, our differences, our intolerances, our society and culture and how we hurt others with our judgements and by insisting our ideas of what is “right” should be adhered to by all.

“One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy.”

Julia goes on to write – “Without this part autism is not worth having.”

I have written before about Emma’s joy.  We call it her bliss.  Left on her own she is in a state of almost constant bliss.  The kind of bliss we neuro-typicals work so hard to attain.  We take classes, read books, go to retreats and meditate all with the hope that we will be able to feel that bliss, no matter how fleeting.  Emma’s bliss is a part of who she is.  It is one aspect of her Emmaness. It is infectious and beautiful.

Julia writes – “If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”

My wish for Emma is that one day she could articulate her thoughts and opinions as beautifully as Julia has here.  Everything I am doing, every “study room” session we do is with that hope in mind.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, obsessive compulsive, Parenting

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Laughter

Posted on March 1, 2012 by | 4 comments

I used to believe I could cure Emma.  I used to believe if I just looked hard enough I would find the thing that would take her autism away.  I read the memoirs by parents who, through various bio-medical or behavioral interventions had “recovered” kids, I avoided reading the memoirs by parents who did not.  I used to believe that by force of will, hard work, focus, dedication and diligence I too would one day have a daughter who had gained membership to that exclusive club of “recovered children.”

I no longer believe that.  However that does not mean she cannot be helped.  Emma can grow, learn and progress as we all can.  It just takes her much, much longer and requires a great deal more support.

Emma has a stomach bug in addition to her other ailments.  She was up on and off all night.  Her ears are bothering her, her stomach hurts, her bowels are sluggish and blocked and despite all of this, despite having just thrown up what little food she ate for breakfast, she is cheerful.  “Belly go bang bang,” she said, before turning on Michael Jackson’s Beat It.

Belly go bang-bang is what Emma calls the sensation she feels before she throws up.  It’s an apt description.  Right now she is singing to MJ’s incomprehensible lyrics and dancing.  It’s a muted version of her usual singing and dancing, but given how uncomfortable she must feel, it’s admirable.

As we lurched through traffic yesterday morning, headed for the emergency room with Emma, Richard said, “Well, you couldn’t accuse us of having boring lives.”

No, you really couldn’t.  And then for some reason I thought of Donald Trump’s hair.  Why this arbitrary and completely ridiculous image came to mind, I have no idea.  But it made me smile.  His wacky, and timeless, I might add, hairstyle is one of a number of constants in life that make me laugh.  I’m grateful for that.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book.

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Posted in Autism, Constipation, Parenting

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Impatience

Posted on February 28, 2012 by | 10 comments

How you do anything, is how you do everything.  I don’t know if that’s a direct quote, but the idea is from a Buddhist teacher who wrote a book with a similar title, which I also cannot remember exactly.  What I do remember is reading that idea and how it resonated.

So I had surgery on Wednesday, was home that night, was in a lot of pain Thursday, barely remember Friday, but know I felt much, much better and by Saturday was over it.  I don’t mean physically, I mean I was over it, as in – we did the whole surgery thing, now let’s get on with life, this has becoming tiresome.  When I woke up on Saturday and still felt like I’d been hit broadside by a semi, I thought –  I should feel well enough to get up and do things.  Then I had to remind myself, it had only been two full days since I woke from the anesthesia and that this was the third day and I would feel better, eventually.  With that thought in mind I wandered around and went back to bed.  Sunday I was more active and yesterday I was a whirlwind of activity, comparatively speaking.  But I did have to take a nap at one point and had a brutal headache.  Today, determined to just “act as if” all was well, I woke with everyone else, tried to do my part in getting the children ready for school, did a load of laundry, and now, sitting here, feel exhausted again, and, it must be said, tired of feeling tired.

How you do anything is how you do everything.

So the bad news is I’m impatient, but that’s also the good news because my impatience pushes me to be active, which is a good thing after surgery as the worst thing one can do is give in to the feeling of just wanting to stay in bed… forever.

Like so many things, emotions tend to seep into everything.  When I feel upbeat and full of energy everything takes on a brighter hue, people seem friendlier, minor delays and the vicissitudes of  life don’t have a lasting impact.  But the opposite is also true.  So this morning while getting Emma ready for her school bus she said she wanted to play a game.

“Okay.  What game do you want to play?” I asked.

“Imagine that game,” she answered.

“How do you play it?”  I asked.

She then began to sing an Elmo song entitled – “Imagine That” and began to script the dialogue between Zooey and another Sesame Street character.

“Now we know what the – imagine that – game is,” Richard remarked.

Yep.  And here’s the thing, this isn’t terrible.  There’s nothing inherently wrong with her choosing to do this during the ten minutes she had left before her school bus arrived.  But I felt disappointed.  I had hoped she wanted to play a game.  You know, a game where we actually interacted.  But that’s not what Emma had in mind.  And it’s okay.  She wanted to sing her song and so she did.

Impatience.  Acceptance.   Impatience.  Acceptance.

How you do anything is how you do everything.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Zombies

Posted on February 21, 2012 by | 6 comments

The night before Joe took the kids on their holiday, Richard and Nic watched Shaun of the Dead, a British zombie movie that is more comedy than scary.  Emma insisted she be allowed to watch too, and while Richard was worried it was too gruesome and that even though it’s a comedy she might be frightened by the walking dead and gore, I thought it would be alright if she watched for a little while.  I draw the line at any movie with sexual content, explicit or even suggested, but zombies, no problem.

“Watch a movie together!”  Emma said.  She snuggled under the covers next to me and then when all the zombies are breaking into the Winchester Pub where the few remaining survivors have holed up, she popped her head up, bugged her eyes out and made biting motions with her mouth.

“Oh Emma!  Are you a zombie?” I laughed.  “Richard!  Look at Emma.”

To say that it was hilarious, would be an understatement.  Her depiction was nothing short of brilliant and by the way, extremely convincing.

“Emma let me see!” Nic shouted above the groaning zombie noises.  For the remaining minutes of the movie we took turns making zombie faces and pretending to bite each other, before collapsing into giggles.

Emma and Nic are spending the day at a water park before heading home this evening.  When we spoke to the kids yesterday, Emma said, “Mommy had to stay home.   Mommy couldn’t go to the new hotel.  Just Nic and Joe.”   She said she was having fun, but then went back to talking about how I had to stay home.

“She misses you,” Richard observed when we got off the phone.

I miss my little zombie too.

I have to have surgery tomorrow morning, so I may not be able to post anything for a few days.  It’s nothing life threatening, but I will be out of commission for a while, maybe, probably, unless I turn into a zombie instead.  Either way, I’m sure I’ll be as good as new in no time at all.

For more on Emma’s journey through a childhood of autism, go to:    Emma’s Hope Book

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A Staycation

Posted on February 20, 2012 by | 2 comments

For Richard’s birthday, Joe offered to take both children snow-tubing and to an indoor water park for three days and two nights over President’s Day weekend.  Both Richard and I leapt at his offer.  Don’t misunderstand, we love, love, love our children.  But it’s really nice to have a couple of days and nights off.  Richard and I haven’t spent time, just the two of us together, for several years.  That was not a typo.  YEARS.  And never before have we stayed home without one or both children here with us.  When I told my cousin about Joe taking the children and how excited we were, she said, “Oh you’re having a staycation!”

The kids and Joe left yesterday.

I cannot describe how incredible it is to have the comfort of our home with only Richard and me (and our cat, Merlin) here in it.  For one thing it is very, very quiet.    And for another we can come and go as we please without booking caregivers, worrying about being home at specific hours; it’s hard to believe a large portion of the population lives this way on a daily basis.  I can’t imagine!  So yesterday Richard and I went up to MAD (Museum of Art and Design) leisurely strolled through the exhibits, even wandered up to the sixth floor to the Open Studios, where we met the artist, Fergus Walsh, a puppeteer at work on one of his wonderfully expressive clay looking creatures with funny eye balls.  Then we made our way downstairs to the Beauty in All Things:  Japanese in Art and Design show, where I saw this Bronze Vessel by Iwata Kiyomi, made of metal cloth, composite, gold leaf, silk organza and acrylic paint.

Never once did one of us say with an edge of panic, even though she was right next to us, “Where’s Emma?”  or “I think the kids have had enough, we better get going.”  We took our time, pausing at things we found particularly compelling, like the moving Japanese screens depicting the changing seasons.

Later we went to see a silly movie about two hired assassins who fall in love with the same girl, unbeknownst to her.  By the time we left the movie it was dark. We walked over to a little restaurant in the Flat Iron District we like, Basta Pasta, a Japanese take on Italian food packed with an eclectic crowd of people from all over the world.  We didn’t worry about rushing home to relieve the baby sitter.  We didn’t bother looking at the time.  Though at one point I did say to Richard, “after dinner I think I’ll text Joe and just check in.”  But just as I said that, Joe sent me an email saying both kids were exhausted and asleep having had a great day snow-tubing and swimming.

By the time we returned home we marveled at how quiet the house was.  We discussed what we would do the next day before turning off our reading lights.

“I’m glad to have this time together, just the two of us,” I said in the dark.

“Me too,” Richard said.

“I’m glad the kids will be back Tuesday night.”

“Me too.”

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, Marriage, New York City, Parenting

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A Blessing or A Curse

Posted on February 16, 2012 by | 5 comments

I rewrote and submitted my Waging War post for the Huffington Post.  They changed some of the tenses (I hate when they do that) and published it last night – click here.  Someone commented, “It is great that you come to the realizatio­n that you can accept your child for who she is. However, I know very few parents of autistic children who confuse their children with their children’s disorder — whether or not they wage a war against autism. Children are blessings, autism is a curse.”

That comment made me think about how difficult it has been, for me anyway, to separate Emma from her autism.   I have always loved my daughter.  I have not loved her autism.  Even now, that concept continues to evolve.  I accept that this is how things are, I accept that she has autism, I accept that because she has autism there are many, many things we must do to support and help her.  I accept that there are things that will take much, much longer for her to  learn and other things that she comes to with no trouble at all.  I accept that who she is has as much to do with the autism piece as it does the Emma piece, that in fact the two are not separate.

Any parent with a child on the spectrum has wondered what their child would have been like had they not had autism.  Would she still have near perfect pitch?  Would she still have an amazing memory, the sort of memory that remembers specific people, places and events when she was two years old?  What sorts of things would she like doing?  Presumably her favored activities: the carousel, the zoo, The American Natural History Museum and FAO Schwartz would have worn out their welcome by now.  Would she still fear dogs?  Would she be the sort of child who had many friends or just a few very close friends?  What classes would she excel in?  What subjects would captivate her?  Where does the autism end and Emma start?  Can we really do that?  Can we really separate the two?  Emma’s autism informs every aspect of her life.  And yes, she is a blessing.  Exactly as she is, with autism or without it.

Nic & Em at the Metropolitan Museum of Art

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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The Shower

Posted on February 15, 2012 by | 2 comments

Emma washed her hair this morning.  By herself.  With almost no input from me.  Emma is ten years old.  Emma has autism.   I used to think those few sentences would suffice.  Keep it short and sweet, age, diagnosis, what more needs to be said?  But I was wrong.  Most people who do not live with a child with autism have little or no idea how monumental something like washing her hair unaided is.  Okay, so I stood outside the shower and had to do a little coaching – “Lather the shampoo on the top of your head too, Em.  Good, now behind your ears, don’t miss the hair on the sides, just above your ears.  No, not like that, Em.  Like this.”  Then I demonstrated by pretending to shampoo my own hair, as she watched me and did her best to mimic my movements.

For the past four years, since Emma began preferring showers over baths, Richard or I have aided her in washing herself and her hair.  Richard’s swimsuit hangs in our bathroom, damp evidence of his continued support.  The few times I tried to let Emma wash her hair on her own, I regretted it. Once her hair dried, revealing large patches of unwashed and now even greasier hair, it was all too apparent that help was still required.  As with everything, it is not that Emma cannot eventually wash her own hair, it’s that it takes a great deal longer for her to learn.  Years, actually.  Many, many years.  “Maybe we should move to France,” I suggested one day after a particularly lengthy and difficult session trying to get Emma to rinse the shampoo out of her hair.  Richard looked at me quizzically.

“They don’t take bathing as seriously as we Americans do.”  (To all French people whom I have now possibly offended, forgive me for my blatant stereotyping.)

“Uh-huh.”

A bit later Nic announced that he too, would like to move to Paris.  When I inquired as to why he thought this was a good idea, he mentioned the museums, the great food, I’m pretty sure he even said something about their coffee being superior, a beverage he isn’t allowed to have.  But I knew his desire had more to do with the fact he doesn’t love showering either.

When Emma got out of the shower, she pulled a towel around her body.  Carefully she began to dry her feet, legs, stomach, arms, just as she has been coached to do for all these years.  “Em, you’re doing such a great job,” I said.

“Drying by myself,”  she said, sternly.  Then she corrected herself, “I’m doing it by myself.”

I nodded and smiled at her.

“Mommy, go away,” she said.

So I did.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Waging War – Not So Much

Posted on February 10, 2012 by | 2 comments

I think of myself as pretty determined.  Someone who doesn’t take “no” for an answer.  A person who doesn’t give up easily.  When Emma was diagnosed I thought of “autism” as something to battle, wage a war on.  I saw it as something we needed to get rid of, a detrimental condition, which needed to be excised.   Emma is not “high-functioning” and while there are many people who reject these delineations of high and low functioning in describing autism, I do not know many parents of children with autism who fall in the moderate to severe category who object.  A child who needs support with daily living skills, while also being non-verbal or almost non-verbal has a very different set of issues than a high-functioning child who is mainstreamed and will most likely need support in holding down a job.  Both will need support, but one will need a great deal more and may never have the opportunity to live independently.  There is a difference.

In the over seven years since I learned of autism and first heard the word applied to my daughter, I find I am slowly letting go of the desire to wage an all out war on Emma’s autism and have been coming around to a slightly different view.  A view I hope will prove to be more productive and less stressful, for all of us.  Allow me to state the obvious – Emma is a little girl, first and foremost.  She is funny, has a great sense of humor, loves music and dancing, loves to perform.  Emma feels tremendous anxiety when she doesn’t know how to do something or is asked a question she doesn’t have the words for or is unable to fully grasp the concept of.  She tries hard.  She makes Herculean attempts to do what is asked of her.  She has sensory issues, which I still do not fully know how to help her with.  She has internal issues I no longer expect anyone to be able to diagnose.  And she is my daughter.

A few years ago she went through a period when she raided my lingerie drawer on a regular basis.  Richard and I (and sometimes guests) would be sitting in the living room when all of a sudden Emma would burst forth, donning a bra and pair of my underwear, but otherwise naked.  The bra haphazardly flung around her shoulders, the cups puckered, the underwear sagged and falling off, she gripped a corner in one hand to ensure they didn’t completely abandon her.  The first time she did this, Richard began laughing, while our guest, I think it may have been an electrician who was fixing a blown lighting fixture stared in stunned silence from his perch on a ladder, while I  hustled her back into our bedroom, out of view.  The second time she appeared, wearing the same combination – never any of the more colorful and attractive lacy lingerie I happen to own, always the same set of sensible, no-nonsense skin-toned bra and underwear – I was able to laugh with Richard, before telling her to go put everything back.  Her raid-mommy’s-lingerie-drawer episodes were interspersed with raiding my shoes, thankfully never at the same time, it was one or the other, for which I am grateful.   Her favored pair of shoes was a pair of red suede pumps, which she would clomp around in.  During these forays into my things, Richard would say things like – “She’s mommy’s little girl!”  or “She’s such a girl!”

That I love her, goes without saying.  She is my daughter, Emma.  Who happens to have autism.  The autism piece is complicated, the beautiful little girl/daughter piece is not.  I used to view Emma’s autism as something separate from her.  I used to think of it as something, like a tumor that needed to be removed.  I am coming around to having a less draconian point of view.  I am beginning to have some acceptance around it.  I find myself thinking less about ridding her of it and more about helping her be all that she can be.  Waging war has been exhausting.  Maybe, in the end, it all comes down to nothing more than semantics, but I am tired of battling something that does not need to completely define my daughter.  I am lucky, Emma is verbal, Emma has shown that she can and will learn to read, write, communicate more appropriately, focus, and is able to understand abstract concepts such as time, names, part vs whole, same vs different, etc.  It just takes a great deal more practice and time.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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