Tag Archives: sensory

Sensory Assaults

Posted on January 20, 2015 by | 54 comments

My friend Bridget wasn’t feeling great.  She felt off-balance and couldn’t walk and it was making it difficult for her to talk.  And then she told me the carpeting made her dizzy.  I hadn’t noticed the carpeting, but when she said this to me, I realized the pattern of the carpet was like an op-art nightmare, in sharp contrasting hues, the repetitive pattern was eye-catching and I suddenly wondered how I could have blocked it out.  But, you see, I had.  The carpet wasn’t a problem until she mentioned it and then I couldn’t not see it.  In addition, there was a plexiglass barrier that gave the sensation of being in an infinity pool, without any of the relaxation involved.  It was as though the carpeting spilled over the edge and disappeared into an abyss.  It was disconcerting and even frightening.

I held out the crook of my arm, the way a blind man in New York City taught me to do, years ago.  A stranger, he’d asked if I could help him cross a busy intersection.  At the time I was carrying my son in a Kelty pack on my back and had my then infant daughter in a snuggly.  When I offered my hand to the man, he told me it was easier for him if I crooked my arm and he then held that, it was more stable, but also gave him the ability to control his own movement more.  Bridget took my arm and we were able to make our way to the elevators without mishap.

It was like pain, you don’t realize how awful it is until it’s gone, and then you’re filled with indescribable relief that makes you hyper aware and surprised by just how bad the pain had been.  Afterwards you wonder how you managed it.  Realizations are like that.  Once you have them they’re impossible to undo or un-think or un-feel.  This is how it is with autism too.

A few months ago I was waiting for the cashier to ring up my groceries.  Suddenly a load bang sounded.  Without meaning to I jumped and turned toward the sound.  It was another cashier smacking a paper bag open.  She was smiling and the cashier next to her did the same thing.  Other cashiers began to laugh and followed by banging their bags open.  I was furious.  The noise felt intolerable.  I wondered what I might say to make them stop.  I went through various scenarios in my mind, from yelling obscenities, to self-righteous indignation, to calling the manager.  And then they stopped.  The deafening sound that felt like a physical assault ended and I realized I’d been holding my breath.

As I walked home with my groceries I thought about how angry I’d gotten and how my body froze and then I thought about how awful it would be if I was assaulted, bombarded with intolerable sounds all the time or lighting that had a similar effect and suddenly, very suddenly, I understood something I had not understood before.  I understood what people meant when they suggested that sensory issues can affect one’s actions, or as they say when referring to autism – how sensory issues can result in “behaviors”.

Had the banging noise continued in the grocery store I would have said something, and it would not have been kind or thoughtful or restrained.  I would have had “behaviors” as a direct result of that awful noise.  Had someone told me to calm down I would have been even more furious.  My actions would most certainly have been viewed as over reacting or needlessly extreme.

Had I not been present when my friend Bridget told me how awful she felt and that she needed to sit down for a second and then told me why, I would not have noticed the awful carpeting nor would I have understood how the pattern of a carpet could disrupt one’s equilibrium so much so that one might lose the ability to speak.  These are the things I am learning.  These are the things that make the difference between understanding, and maybe even being able to do something helpful and not.

An Innocent Paper Bag...

An Innocent Paper Bag…

54 Comments

Posted in Autism, Parenting, sensory issues

Tagged , , , , , , , , ,

Demanding Speech

Posted on March 24, 2014 by | 33 comments

Over the weekend I witnessed a young man who did not easily speak and when he did say a word, it was clear how hard he was having to work for that one syllable.  Yet the people around him bombarded him with questions.   Questions he could not answer with spoken language, but that did not stop them from asking.  When he managed to make a sound resembling the answer they wanted, they would pause for a moment before asking him another question.  After about ten minutes of this he retreated into what looked like a sensory friendly room, where he rocked gently back and forth, holding his hands over his ears.  Even so, the questions continued.  

Another boy who was having his lunch was told during a ten minute time period to “look at me” more than a dozen times.  He too could not easily speak and was asked a great many questions.  Things like, “Is that good?” When he said, what sounded like, “Yes,” the other person said, “Look at me.  Stop.  Put down your fork.  Look at me.  Is it very good?”  When he again said, “Yes,” he was allowed to eat his lunch for a few seconds in peace before the next question came.

People often ask me why I object to ABA therapy.  It is not only ABA therapy that I object to.  It is ANY therapy that treats another human being as these very well-intentioned people were treating these young people, all of whom were teenagers.  I object to the way so many, who are in the field of autism are trained and how that training  affects how they speak to and interact with people who are autistic.   I do not, for a moment, doubt that they believed that what they were doing was good and ultimately helpful to the kids they were working with.  Yet each one of them was unconsciously or not, treating those kids as though they could not and did not understand what was being said to and about them.  The kids were not being treated as one would treat their same age non autistic peers.

On the Presume Competence – What Does That Mean Exactly – post I wrote, “What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.”

What I saw was fairly typical of what I see often – well-meaning people who are working with autistic people, but who do NOT presume them competent, not really.  Had I said something to any of these people, I’m sure they would have expressed surprise with my observations of what they were doing and how they were interacting.  I would even guess that they would have told me that they were presuming them competent.  These were not mean people, they were not sadistic people, these were people who believed in the training they’ve been given and believed this was the best way to interact with these teenagers.

At one point the young man who was trying to eat his lunch, looked over at me and my son.  My son, smiled at him and I did a little wave and said, “hi.” He nodded his head ever so slightly at us and then the person who was paid to sit with him, asked him another question.  I do not doubt for a second that all the kids there were competent.  In fact I am convinced of it.  I know it to the core of my being as I have been around so many people who cannot speak, or who can speak, but not easily or naturally and who are all competent.  But this was not how they were being treated.  This idea, which is popular with a number of therapies, not just ABA, that we withhold desirable things until the person speaks as demanded, is not something I agree with because it is based in a presumption that wanting something is equated with ability and this is incorrect, even if it obtains the desired result – a verbal utterance.

Until Emma began to write, using her letter board, I had a great many thoughts about her that have proven incorrect.  Until she began to express herself through those words she painstakingly spells out, I was not treating her as the exceedingly  competent human being that she is, even though I often thought I was.  Even now, on any given day, I do not do this as well as I’d like to.  All those years of ingrained thinking are extremely difficult to change.  But change I must…

A Renassaince Princess

A Renassaince Princess

33 Comments

Posted in ABA, Autism, Parenting

Tagged , , , , , , , , , , , , , , , ,

Travel, Friendship and Sensory Overload

Posted on December 16, 2013 by | 34 comments

A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport.  Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that.  Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.

It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely.  But the wipers made a scraping noise that I found almost intolerable.  Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board.  It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter.  I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.

As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch.  It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry.  I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.

Ib began to very quietly and gently tell me what she was about to do, before she did it.  So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down.  Ibby was modeling, actively demonstrating what I need to do for my daughter.  She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.

As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person.  I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life.  Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person.  Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again.  However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.

As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight.  All the things I do without thinking, without questioning, things I take for granted.  But I also was aware that this relief is not what others, others like my daughter, necessarily experience.

34 Comments

Posted in Autism, friendship, travel

Tagged , , , , , , , , ,

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

3 Comments

Posted in Autism, Parenting, sensory issues

Tagged , , , , , , ,

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

8 Comments

Posted in Autism, Education, sensory issues

Tagged , , , , , ,

Biting and Other Self Injurious Behaviors – Autism

Posted on September 22, 2011 by | Leave a comment

Yesterday Emma came home from school with her forearm covered in bite marks.  I sat down next to Emma on her bed and gently touched her arm.

“You bit!”  She said sadly.

“I can see that,” I said, stroking her arm.

“I want to unlock it,” she said, twirling a scrap of what was once her blanket around and around her index finger.  “I want cokie,” she added.

I continued to stroke her arm.

“You cannot bite!  Emma!  No biting!”  She shouted.

When Emma is very upset, she begins to script.  In other words she mimics things others have said to her using the same tone of voice and if they have an accent, she’ll say the words with the same accent.  It’s a bizarre experience to listen to your upset child alternate between using someone else’s words, tone and inflections and her own voice, as though she were auditioning for all the roles in a play with an ensemble cast.  Sometimes she’ll throw me into the mix – “Oh sweetheart!”  and then severe and scolding – “You cannot bite!  That is not okay,” with her own pleading, “I want cokie, I don’t want to lock it up,” then the logical, calm tone of a teacher or therapist, “You can have cokie later.  First go to the roof, then you can have cokie.”  Her face crumples up while she fights back the tears, often losing the battle and collapsing into an anguished heap of heaving sobs and cries.

At a certain point, when her frustration, anger and upset become more than she can bear she turns it inward and becomes violent toward herself.  The emotions too great for her to contain, she bites herself, leaving the imprint of a full set of teeth upon her arm or finger or hand.  Once, when I held her arm to prevent her from hurting herself she jerked her other arm away and punched herself hard in the face.  The force with which she did this, took my breath away.

I mentioned on this blog, once before, when I was younger I struggled with bulimia.  A more accurate description would be less a struggle and more a complete and utter surrender to the eating disorder.  A therapist I was seeing at the time talked of the act of vomiting as self inflicted violence and I remember being furious with this description.  I wasn’t being violent toward myself, I was simply pursuing a thinner physique.  But after years and years of therapy and then recovery I came to recognize the violence in what I had done to myself for all those years.  When I see my own daughter hurting herself it is impossible for me not to reflect on those years of frustration and rage.

Emma’s acts of self injurious behavior are expressions of her rage, frustration and there is an added piece to this, I am convinced – the desire to control the pain, coupled with her many and varied sensory issues.  I think the combination is deadly.  But how to help her?

That is the question I have no solid answer to.  For now we are trying to explore other ways for her to get her sensory needs met without hurting herself.  However I know from having engaged in destructive behavior for more than two decades how entrenched and addictive that behavior can become.  There are no easy solutions, but then autism itself is like that.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

Leave a comment

Posted in Autism, Parenting, Self Injurious Behavior

Tagged , , , , , , , , , , , , , , , , ,

Amusement Parks & Autism – Continued

Posted on June 17, 2011 by | 1 comment

Emma’s entire system was crashing.

“You have to ask Mommy!  Mommy can I go on the roller coaster with Gaby, please?”   She cried over and over again through screams and tears.

It was heart breaking and anyone with a neuro-typical child would think – oh just let her go on it one more time and then go home.  I even thought this a number of times as I tried to peel her off the pavement where she had fallen in a heap of tears, snot pouring from her nose, her hands made into tight fists while hitting herself in the head, on her chest, legs, arms wherever she could before I, or any of us could stop her.  The biting is horrible because it can break the skin and then there’s blood, and later scabs and enormous angry blue and purple bruises that can last for more than a week, reminding all of us of her agony.  But the hitting – a quick, violent punch to the face is shocking to witness and as a parent, it’s difficult not to feel one has done something horribly, horribly wrong.  How can this sweet, blissful child do this to herself?

Emma waiting for Joe, Nic and Gaby while they ride on the Corkscrew

Richard and I have always said to the children – hitting is wrong.  We don’t do it, we don’t want them to ever do it to each other and until Emma began hitting herself, it hadn’t occurred to us to add – we don’t hurt ourselves.  We don’t hit others or ourselves.  We say it, but I don’t know that it makes a difference.  When Emma’s brain has become set on something, no amount of calm, reassuring logic seems to help her.  No amount of soothing, we just have to vacate the premises.  It’s our only hope.  Kind of like shutting the whole system down, a kind of reboot.  We have tried the other option, which is to let her go on one more ride or do whatever it is one more time and the misery, the abject misery continues.  Like an addict who has to have that drink or that drug even while bringing them no real solace.  There’s no relief to be had at a certain point.

“Emmy it’s going to be okay.  We’re going to go home now.  We can ride the little roller coaster one more time and you can sit with Gaby and then we have to go home,” we told her.

But Emma’s brain couldn’t take in this information it was already in lock down mode.  I gave her a banana to eat and then everyone, our once cheerful little group, now more weary warriors than a family intent on having a lovely day at an amusement park trooped along.  She was able to sit with Gaby on the little roller coaster for one last ride and then we trudged back to the car while Emma kept looking over her shoulder at the wooden roller coaster named Roar.  As we headed home Emma said, “It’s okay, we’ll come back tomorrow.”

“No Em.  Tomorrow we’re going to traintown where there are different rides and then we’re going to Uncle Andy’s wedding,” we told her.

“Different rides,” Emma repeated, sadly.  “We’ll come back soon,” she said.  There was a wistful tone to her words, and we knew it wasn’t likely that we would ever come back to this part of the world.  But there would be other amusement parks and maybe one day Emma’s massive sensory issues will have abated to such a degree that these kinds of episodes will become rarer.

We can only hope.

For more on Emma’s journey through a childhood of autism go to:  www.EmmasHopeBook.com

1 Comment

Posted in Autism, Parenting, Self Injurious Behavior

Tagged , , , , , , , , , , , , , , , ,

Autism & Emma’s Loose Tooth

Posted on May 10, 2011 by | 3 comments

I forgot to mention in yesterday’s post, Emma yanked her tooth out at some point in the movie theatre as we watched Hoodwinked Too this past Sunday.  I don’t know when, all I know is that when we proceeded out of the theatre into the light of early evening, I looked over at her and saw the gaping bloody hole in her gum once occupied by a tooth, her lower left incisor, to be exact.

“Oh my gosh, Em.  What happened to your tooth?”  I asked.

“Pulled out your tooth!” She said happily, bouncing up and down.

“I can see that.  But where is it?  Where did you put your tooth?”

“You threw it.  In the movie theatre, yeah,” Emma said, nodding her head up and down.

“God, Emma.  I can’t believe you just chucked it,” Nic said, no doubt thinking of the money she had essentially just tossed away, being well versed in the ways of the “tooth fairy.”

As a quick aside here, Nic caught on to the whole tooth fairy thing years ago.  “Mom, you can stop telling me about the tooth fairy.  I’m not stupid,” he said to me several years ago.

“I don’t know what you’re talking about, Nic,” I said, feigning shock.

“I know you and dad sneak into my room at night,” he pantomimed tiptoeing like a cat burglar with an evil expression on his face as he said this,  “and leave money.”  He looked at me, but I kept my face blank.  Exasperated he said triumphantly, “You guys are the tooth fairy!”  He said this with the kind of flourish one might expect from Hercule Poirot or Columbo as they sum up a particularly tricky mystery.  Okay, I’m dating myself, but you get the picture.

“You threw it!”  Emma said, evidently pleased with herself.

I looked over at Richard who shrugged and kept walking.

“I think we have three of her teeth.  All the others are on the floor of various school buses and now the floor of the movie theatre,” I said.

“I think there’s one somewhere in the vicinity of the Central Park carousel,” Richard added, thoughtfully.

“She’s never really taken to the whole tooth fairy concept,” I said.

“Yeah, right,” Nic laughed and rolled his eyes.

In fairness to Emma, it is an odd concept, one we tried to explain to her when her first baby tooth looked as though it might come out soon.

“So Em, when your tooth comes out you have to save it, okay?” I said, kneeling down so I was eye level to her.

She ignored me.

“And you give it to Mommy, okay?  We’ll put it under your pillow and the tooth fairy will come and take it and leave you money,” I said, realizing how bizarre this sounded to someone who takes things literally and has no concept of money, before I’d even finished.  “Okay, Em?”  I asked as she squirmed away from me.

Later that day the tooth was gone, where she put it we have no idea.  As with all of Emma’s teeth, there is a ruthless quality to her handling of her baby teeth.  They become loose and she will often say, “Pull it out!”  I’m never sure if that’s a direct request, though she did ask Joe once, about a year ago, but he refused.  The next time  I notice the tooth, it is inevitably gone.  How she manages to yank it out, without us knowing, without a sound or cry of pain, is one of the many mysteries of all things Emma.  The way she experiences pain is exemplified in all those missing teeth.  I can still remember the agony of loosing my baby teeth, the days of pain I would endure.  Emma, apparently feels none of this.

“Tooth missing!” she exclaimed  when she returned home from school yesterday.  She opened her mouth and pointed at the place her tooth once inhabited.  “You threw it!”  Then she laughed and jumped up and down.  “You threw it in the movie theatre!”  She laughed, whipping her plastic velcro strip around her head like a lasso.

Emma wielding her plastic strip

For more on Emma’s tolerance for pain and her continuing journey through a childhood of autism go to:  www.EmmasHopeBook.com

3 Comments

Posted in Autism, Parenting, sensory issues

Tagged , , , , , , , ,

Pain

Posted on February 14, 2011 by | 1 comment

When Emma was a toddler, about a year old, maybe two years old, she had a little scratch from the tag on the back of her shirt.  It seemed so insignificant, hardly worth noticing, except that Emma screamed as though her entire body had been scalded.  I remember at the time thinking it strange, that her response seemed too extreme for such a tiny scratch.

There were other incidences which also caught my attention for the very opposite reason.  She would stub her toe or get scratched by a cat or have a huge knot in her hair, none of which would cause her to even gasp.  When she grew older I was terrified of the day when she would start to lose her baby teeth, convinced this would set off such cries of pain, with no remedy other than to wait until the tooth came out of it’s own accord.  However this was not to be the case.  In fact, Emma grabbed hold of the loose tooth and simply yanked it out of her mouth, dropping it to the ground, as though it were nothing more than an irritant, like a pebble in ones shoe.  Evidently her school bus is littered with her baby teeth as she would board the bus in the morning with a loose tooth only to come home and announce, “Threw it away,” when asked what happened to her tooth.

“Where?  Where did your tooth go?” we would ask.

“On the bus,” Emma replied matter-of-factly more than once.

About six months ago Emma was reported to have said to Joe, “Joe!  Pull it out!” and then opened her mouth so that he could remove the offending tooth, which he didn’t, so she did.  Joe was able to intercept the tooth before she was able to toss it in the gutter.

I don’t think we have more than two or maybe three of Emma’s baby teeth, despite the fact she’s lost at least eight or more by this point.  We tried to tell her about the tooth fairy, but she was utterly uninterested and wandered away before we had finished.  The idea a “fairy” would come to gather up her loose teeth, leaving behind money, was not a concept Emma had any use for.

Last Friday Joe called to tell me Emma was whimpering and saying her ear hurt.  I immediately called the pediatrician then looked at Emma’s throat for signs of strep.  Sure enough there was the tell tale white spot on one side of her throat.

“No say AHHH!” Emma said, pointing at her throat.

“Well, let’s wait and see what the doctor says, Em.  Does your throat hurt?”

“Yes.  Ears.”  Emma replied.

“Your throat and your ears hurt?” I asked.

“Yes.”

I remembered the last time I’d taken her to the pediatrician because her ears were bothering her, only to be informed that in fact she had strep, again.

Upon our arrival I proudly stated that I was sure it was strep and went on at length about how I couldn’t believe Emma had somehow contracted strep making this the third time since the school year began.  The pediatrician smiled and nodded her head as she examined Emma who kept insisting “No AHHHH!”  Meaning she didn’t want to have the doctor swab the back of her throat.

“Just ears,” Emma said repeatedly.

The instant the pediatrician looked in Emma’s left ear she looked up and said, “Raging ear infection.”

“What?” I asked, thinking I’d misheard, so convinced was I that Emma had strep.  “But what about that white dot on her throat?”

The pediatrician shrugged.  “Could be food, not sure, but her ear is bright red.  An ear this red should be extremely painful.”  She said looking at Emma.  “I’m surprised she isn’t complaining more.  It’s a really bad infection.”

I watched as Emma played cheerfully with the doctor’s stethoscope.  Observing her, one would never know her little body was host to a horrific ear infection.

“So that’s it?” I asked, still unable to believe she didn’t have strep.

“Yup.  Antibiotics will clear it up, but give her children’s advil in the meantime, that ear has got to hurt,” the pediatrician said.

By the time I had procured the prescription and the children’s advil and returned home, Emma was running around, playing happily.

“Hey Em.  How do you feel?  Does you ear hurt?”

“Yes.” Emma said before racing off down the hall with Joe in hot pursuit.  Shrieks of laughter could be heard.

One of autisms defining features is what specialist call sensory integration issues.  They can range from hypo to hyper and are often a mixture of the two.  In Emma’s case she has both and we still cannot anticipate which one we are witnessing.

1 Comment

Posted in Autism, Parenting, sensory integration

Tagged , , , , , , , , ,