Monthly Archives: March 2012

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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Dionne Warwick, Somersaults and Feelings

Posted on March 8, 2012 by | 3 comments

Every morning after her breakfast, Emma listens to music, which she dances and sings to.  This morning she played Dionne Warwick.  Emma has choreographed specific dances for specific songs and in one she has even incorporated a series of somersaults; it’s a kind of Cirque Du Soleil goes disco moment.  When one of us dances with her she will sometimes dance with us while laughing, but just as often will turn her back or, as she did last night yell, “No Mommy.  Sit down!”  So horrified was she by my undulations.  At other times she will hold an arm out in front of her with her hand held like a shield blocking her eyes from us, although I think from her perspective we are the ones being blocked from her.  We’ve made a game out of this and will dart around her so that we are within sight while Emma shrieks with laughter.

“She wants to engage with others,” one of the many specialists noted during an evaluation when Emma was just three years old.  “No one can teach a child that.  You’re way ahead of the game.”

When Emma was first diagnosed I read about how autists are unable to understand emotions and have little if any desire for interaction.  I then reached the conclusion that were this true Emma didn’t feel the full range of emotions we neuro-typicals do.  But I quickly found this to be false.  In fact, I would say the opposite is true.  Emma feels the full range of emotions available to any of us in high-def.  I have seen the look on her face when she thinks she will get to see one of her cousins, but is told they are not coming after all.  Emma’s feelings get hurt, she feels tremendous disappointment, she prefers being with her family more than anything in the world, she finds comfort in specific people just as any other child does.  She has favorite friends at school whom she seeks out.   If anything Emma is an extremely sensitive child, just as her brother is, the difference is she isn’t able to talk to us about her feelings, at least not yet, and the way she conceptualizes situations may be different, I don’t know.  What I do know is that Emma feels a great deal.  Her feelings are easily hurt, she feels tremendous frustration, disappointment, sadness as well as happiness, joy, excitement, anticipation and love.

Before Joe took the kids to a giant indoor water park two weeks ago, Emma said, “I’m so excited!  Mommy and Daddy come too?”  Her full range of emotions were obvious in those two utterances.

Regarding our IEP meeting yesterday – thank you to all who reached out.  These meetings are never fun and this one proved to be no different from the rest.  We did insist that Emma’s sensory issues be noted, though we were told the words “sensory diet” could not be used as they were a specific methodology and therefore could not be included in the report.  We found this somewhat baffling as a sensory diet is not a “methodology.”  It’s a bit like saying someone’s wheelchair is a “methodology,” but rather than quibble with them, we made sure specific references were made throughout her IEP, which should help, if anyone actually bothers to read it.  At least they didn’t say – “Oh yes, I see here that she eats a limited number of foods,” which was what was said to us several years ago during another IEP meeting when we spoke of the need for a “sensory diet.”

I will end with a series of Prepper acronyms WTSHTF (When The S**t Hits The Fan) at least we’ll have our BOB (Bug Out Bag – enough supplies to last a week or so) or at the very least our GOOD kit (Get Out Of Dodge) so that we’ll be prepared for TEOTWAWKI (The End Of The World As We Know It).  I am not making these up.  They exist.  I swear.  Gotta love that.  And for all of you as amused by The Donald’s (TD’s) “hair” as I am, he claims it is NOT a weave, though some have speculated that it’s a “double comb over” (DCO) which is one of the funniest things I’ve ever heard, so I’m going with that theory.  I promise I’m done.  OAO.  (Over And Out.)

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

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Posted in Autism, Parenting, sensory issues

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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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