Category Archives: sensory issues

How we Communicate – A Podcast

*This was an assignment for English Composition to create a podcast about something you care about.  This is mine after many revisions and incorporating notes from my teacher.  A written transcript of the podcast is below, but if you can, listen first!

 

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Emma – 2016  Photograph by Pete Thompson

This voice?  The one that you’re hearing read these words?  Yeah, that one.  It isn’t my voice.  It’s my mom’s.  You’re probably wondering why a teenage girl would want her mom to read what she’s written.  In my case, it’s because I can’t read what I write out loud.  There’s not a direct line between my brain and my mouth.  It’s more like an elaborate maze.  I can’t speak so people understand what I mean.  If asked a question, my mouth says things that do not answer the question.  My brain doesn’t think in words the way most people’s do.  Names of things and people get handed to me instead of the words that would make sense to the person questioning me.  Sometimes I blurt out whole sentences from another time in my life.  (Emma’s voice) “I bounce a balloon to Emma.  I bounce it back to me.”  They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling.  (Emma’s voice) “No more ice skating.  Ice skating’s gone.”  In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me.  Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say.  There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice.  I sound like I’m maybe five years old.”  (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British.  But yeah, it’s just not me.”  Or I can sound like this.  Okay it’s not my voice, but with some direction, Mom sounds better than a computer.

Imagine for a minute that you can’t talk to people in any way that makes sense to them or you.  Imagine if every time you opened your mouth to speak other words tumbled out.  If you are like me, you might get used to not answering people’s questions or being able to stay on topic.  So what would you do?  How would you interact with people?  Would you ignore their questions?  Pretend you didn’t hear them?  How would you express yourself?  Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate.  That’s what I do.

(Sound of footsteps, people talking and the subway)

Sound is everywhere.  I don’t have a filtering system marking one particular sound as more important than another.  Can you understand what I’m saying right now?  Mom had to raise the volume of her voice so that you could hear it above all the other noise.  My brain doesn’t do that.  It hears all sounds equally and does not discriminate.  But some people’s voices are not as dramatic to my ear as the honking of a horn.  I love the sound of honking horns.  (Horns honking and traffic noise)  Favoring some sounds dilutes others, but music has the best sounds of all.  (Body Knows Best – Anya Marina)

Music is my first language.  It is a friend who loves me unconditionally.  It’s there when I need it and does not shed a tear if ignored for some time.  Music is a positive force as it stands by my side.  I like hearing the same melodies repeated and did so even when I was very young.  It’s been a comfort to me as long as I can remember.  Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to.  It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create.  Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress.  (Music fades out)  It calms me and this has been the case throughout my life.  When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice.  When I sing I am not apart from, but instead am part of.

Music can be both private and public, but it needs to be loud.  (Music gets louder) No one composes music in a whisper.  My body needs to feel the beat so that I can be consumed by it.  (Volume increases steadily and then fades)  When that happens I become part of the music, like another instrument or an extension of it.  I jump and dance and move.  My arms swing or are raised up and my head bops, my whole body keeps time to the beat.  I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.

At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine.  (Heartless – Kanye WestMy older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.

(Emma’s brother)  “Yeah I think it’s totally fair that you’re able to use the living room.  It’s not like you play bad music or anything.  If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”

My mom and dad both work at home and need quiet in order to concentrate.  I am told to wear headphones, which encumber my movement and dilute my experience.  My family has worked out a solution that allows me to commandeer the living room in the evening.  For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.

Until about a year ago I didn’t know the joy of creating music.  Until then I was an audience member, but not a participant.  My parents encouraged my love of music and hired teachers to help me expand my interests.  Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind.  Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me.  Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all.   Eliot is my piano teacher and Karen is my singing coach.  Eliot came first.

(Eliot) “Emma has a great ear.  She can learn to sing new melodies really quickly and accurately.  Recently she’s been listening to the car horns outside and sings their exact pitch.  Emma is a fun, expressive and creative singer/performer.  She brings a lot of life, passion and feel to the material.”

Karen came next.

(Karen) “Emma has really great pitch control.  She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”  

(Gimme Resurrection – Anya MarinaKaren and I have great fun together.  I feel at ease in her presence, which is important when you are learning new things and trying to be creative.

Eliot and Karen have taught me to be patient with myself.  From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product.  Communicating isn’t just talking, it’s developing a connection with another.  Music connects us all.  I wrote these lyrics and composed this melody, so this voice?  Yeah, this one’s mine.

Emma sings Over and Coming
Eliot Krimsky on keyboard

The girl’s going in the bed
the girl is going inside
the girl is going outside.

Who is this girl I see?
Who is that girl I see?
Watch careful-ee-ee-ey
Listen to me-ee-ee

Over and coming and over and coming,
over and coming and over and coming

Go, go, go,
go, go, go,
go, go, go, go

Go, go, go,
go, go, go,
go, go, go, go

Find a way
to seize the day
Dare to be the leading girl!

The girl walks out the door
the girl walks in the door
the girl is a teenager.

I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.

I’m ready to fly if you let me,
I’ll go
Turn up the music and
just don’t say no.

Starting and going and starting and going
starting and going and starting and going
Starting and going

Do, do, do, do, do, do….

Sensory Assaults

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…

Memories Evoked

I enter the subway car.  To my delight there is an empty seat near the door.  I sit, rummage through my bag for my book and begin reading from where I left off, but the words are blurry and I cannot concentrate.  I am aware of a powerful odor emanating from the person seated next to me.  I close my eyes and try to concentrate on breathing through my mouth.  My stomach clenches and my eyes begin to water.

I’m five years old.  Mrs. Williams is rustling about in the other room.  The pain in my chest is as much from the ache I feel because my parents have left on their yearly trip as it is from my fear of the woman who has been hired to take care of us for the next few weeks.  Mrs. Williams with her coiffed hair and antiseptic smell, everything about her is no nonsense, business like, a kind of grim resignation that oozes from her every pore.  When angry she uses her hand, like a paddle, it comes down swift and seemingly without emotion, as though the pain I feel upon contact has nothing to do with anything: arbitrary, remote, senseless.

I hate Mrs. Williams and my anxiety and sadness that my parents have left us, even for only a few weeks adds to my hatred of her.  She crinkles and rustles when she moves, her skin hangs from her body like an ill-fitted suit, she smells of soap and perfume that make me nauseous.  She is stocky and seems well rooted to the ground, her movements are steady and purposeful.  She rides out the time my parents are gone like a convict doing time.  I can find nothing pleasant about her.  Just thinking about her fills me with fear.   Her dislike for me and my sister is all the more apparent when my brothers are around as she obviously dotes on them and shuns us.  If ever there is a dispute, it is my fault, no matter that I am the youngest with siblings a full eight and six years older than me.   

We are told she had a son sent to Vietnam who never returned.  We are told it is because of this son that she adores my brothers.  I take this information in stride.  It is fact.  I am representative of something unwanted, something I do not and cannot understand.  She is particularly concerned about my bowel movements.  She takes note of them, even going so far as to stand guard outside the bathroom listening for sounds of success.  As I sit on the toilet I imagine her ear pressed to the door.  Why this is important is something I can’t figure out, but that it is, is evident by the reports she feels compelled to give my older siblings.  Now my brothers and sister are on high alert.  My bodily functions are examined, discussed, they have become a topic.  The more I am closely observed the more  anxious and fearful I become.   

I grip my book tightly and try hard to breathe out of my mouth. I glance over at the woman next to me.  Her eyes are closed and I realize she is asleep.  As the train careens through the darkness, her body sways with its motion.  The train turns.  She leans into me, the smell of soap, antiseptic, and some other odor I cannot identify, but that reminds me of those weeks once a year when my parents left us in the hands of someone who should not have been caring for small children, is over powering.  She is unaware of me or the memories her presence has evoked.

I think of my children.  I see the look of anxiety on my daughter’s face when she says, “No, not going to Katie’s class.  That is the old school.  Emma goes to new school.  Emma goes to new school with Mommy.”  And all I can hope for is that her new school will not be staffed by anyone whose presence gives her cause to remember them decades later with anxiety and a feeling of plummeting through an endless darkness.

Visiting the new school

New School

Muddying the Water: Alleviating Pain ≠ “Recovery”

A few months ago I wrote about how, once we were given an autism diagnosis for our daughter, so many of the things we believed were uniquely and wonderfully “Emma”, were suddenly thought to be examples of her “autism”.  Things were either categorized as a deficit or a “splinter skill”.  Splinter Skills and Other Words We Use concentrated on talents, interests and abilities.  My friend, Chavisory reminded me yesterday of the physical issues often mistakenly believed to be part of autism.  Things like allergies, insomnia, GI problems, epilepsy and food and eating challenges that often people who are Autistic have, but that many in the general population also experience.

Chavisory mentioned in her comment, a NYTimes article about a drug trial thought to minimize social withdrawal in Autistic people and those with Fragile X.  She wrote, “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” Chavisory’s point is an important one.  This distinction is critical.  Not only because researchers are often trying to treat something that is actually something else, but because it confuses caregivers into believing they can “cure their child of autism”.

When a non autistic person has food allergies or insomnia, we say they have food allergies or insomnia. When an Autistic person has a food allergy or insomnia, many believe it to be yet another aspect of their autism.  People talk about “co-morbid” diagnoses of an Autistic person as though it were all folded into the autism diagnosis.  The problem with all of this is, it muddies the waters and makes people misunderstand what autism is and isn’t.  And it opens the door for many to believe they are curing their child of autism.  Taking care of allergies, GI issues and insomnia will not make an Autistic person non Autistic, however it will make them feel a lot better.

When an Autistic person with food allergies or debilitating insomnia, who also has hyper sensitivities to texture, taste, smell and sound, is given melatonin to help them sleep or a diet that complements their specific constitution, it stands to reason they will exhibit behavior that reflects that.  When anyone, who is in extreme pain and exhausted is helped to have that pain and exhaustion alleviated, they will feel better.  They will be able to smile perhaps, focus, be more alert, even engage in conversation, with an ease they would not exhibit when overwhelmed with pain and exhaustion.  But when this person happens to be Autistic, people use language suggesting their “autism” has been reduced; words like “recovery” and “cure” creep into the conversation.

Suddenly people become convinced that every Autistic person has food allergies, GI issues and sleep disorders and therefore ALL should do x, y or z.    If that doesn’t work, instead of questioning the underlying issue (that perhaps this person does not have an allergy or insomnia)  many will up the ante by doing more radical “treatments” to treat an allergy or condition that the person actually does NOT have.   Logic falls away.  Common sense is rejected.  The pursuit of a perceived “problem” that may have never existed is discounted as not the problem.   The answer is to pour more money into finding the thing that will remove the “autism” even though autism is not what is causing the pain and discomfort.  Special doctors and “autism specialists” are brought in to advise and treat.

When we start throwing all kinds of things at an “autism” diagnosis, when a massive array of physical and emotional things get added, when temperament, interests, preferences, talents become embedded in the “autism” diagnosis we are causing far more confusion and problems to an already confusing diagnosis.  And people misunderstand and say they’ve “recovered” their child or their child has been “cured” instead of recognizing that what’s really happened is they found something that helped their Autistic child, who had allergies or insomnia feel better.  Meanwhile thousands more, who pursue similar ‘treatments’ with no benefit to their child, conclude they need to find a better doctor, or treatment, or diet instead of acknowledging their child doesn’t have an allergy.

Em listening to an opera rehearsal over the weekend 

*Emma

Try to Imagine

Imagine… Imagine that from the moment you were born every aspect of your being was evaluated and studied with a critical eye.  Imagine that who you were, the way you spoke, moved and behaved was seen as deficient.  Imagine that from an early age you were talked about as though you didn’t understand and even if you did not fully understand everything said, you understood the emotions behind the words, the disappointment, the fear, the anger, but you had no idea why you had caused such a response.  Imagine how that would make you feel.  Now imagine how you would feel if you understood every single word uttered, but you could not speak or make it known to others that you understood.  Imagine how you’d feel if you grew up believing your very existence caused others discomfort, pain and suffering.

Imagine that as a small child you were assaulted by light, sound, touch, odors, taste, things that did not cause others pain, but that made your life almost unbearable.   Imagine that you also felt people’s energy intensely but were often confused and overwhelmed by these feelings.  Imagine that when you cried in distress you were greeted with anger, confusion or were told nothing was wrong and to stop behaving this way.  Imagine how you would feel when you finally located the correct words and spoke them, people misunderstood you, became angry with you or you were told the tone you used was “wrong”, inappropriate or the volume with which you spoke was too loud or too soft.  Imagine trying as hard as you could to speak as you’d been instructed, but no matter how much you tried, you never seemed able to get it “right”.  Imagine what that would be like.

Try to imagine how you’d feel if you mustered up the courage to connect with another human being only to be shunned, teased or rejected and told to go away.  Imagine what it would be like to want to have friends and play dates and sleepovers but you had none.  What if you tried to make friends, but when you tried to connect you weren’t able to and didn’t know why.  What if your attempts to be friendly were seen as acts of hostility.  What if you punched someone on the shoulder because you’d seen friends do that to each other, but when you did it you were taken to the principal’s office, reprimanded and threatened with expulsion.  How would that make you feel?

Try to imagine what it would be like if the few things that brought you joy were stopped or taken away from you.  Imagine if you loved nothing more than to jump up and down, that this motion made you happy and calm, but when you did this you were punished.   Just imagine what it would be like if the things you found fascinating were ridiculed and joked about.  Now imagine that you are unable to make words form in your mouth so that you could say anything to explain or protest.  Or imagine what it would be like if you were able to speak and when you did, you were told your words were unacceptable.  You were threatened with punishment and institutionalization.  Take a moment to really imagine how that would feel.  Imagine what it is like to need help, to have to rely on people and to have those people hurt you, betray you, get angry with you over and over again.

Just imagine how it would feel if experts talked about your neurology as a deficit.  Imagine how it would feel to be told over and over that you were neurologically incapable of understanding what another person feels, and that you couldn’t truly understanding your fellow human beings.  When you suggested you felt a great deal, when you talked about how painful it was to look directly into people’s eyes because it was like seeing into their souls, or when people went to hug you it made your skin crawl or the odor emanating from the other person was too overwhelming, imagine what it would feel like to have people suggest you should just try harder or that you should do it anyway.  Imagine just for a moment how you’d feel if those same people then accused you of being difficult and told you it was impossible to have a “rational” conversation with you or you were told you were rude when you confronted them with their insensitivity.  Imagine what it would be like to be dismissed and silenced over and over again.  Just try to imagine what that must be like.

Try.

Try to imagine what it might be like to be Autistic.

Sensory Overload and Sensory Cravings

My friend Ibby posted this video on her Facebook timeline (for those triggered by loud noise, flashing lights and/or prone to seizures, do NOT watch or at least turn the volume way down and stand back)  

A twitter friend, after I reposted this video, wrote that this was why he wears headphones and I tweeted back that while Emma is sensitive to some noises, for the most part she craves noise and typically turns the volume up as loud as it can physically go on both music and favorite movies, much to the horror of our various neighbors.  Even though we live in New York City (a place that is, for many, a sensory overload), people get cranky when woken at 6:30AM on Saturday morning to the strains of Michael Jackson’s Beat it.  Even hard-core MJ fans protest at the volume Emma prefers and at that time of day.

My twitter friend tweeted back, “I like certain noises, Avenge Sevenfold. ;D  It’s noises other than the one I’m trying to focus on that are the problem.”  And this is exactly the important distinction that I often forget or have trouble understanding.  Unless you have sensory issues, like the ones depicted in this video, I think it’s really hard to fully understand how debilitating sensory overload can be.

A couple of months ago I went to do our weekly grocery shopping run at Whole Foods.  Typically I go every Saturday in the early afternoon.  This is a time that isn’t too crazy, the lines aren’t insanely long and often it’s even comparatively quiet.  As I stood in front of the check-out person, the cashier next to her began loudly unfolding a paper bag.  The noise was deafening, a kind of snapping sound followed by crackling.   I actually felt physical pain from the noise.  My cashier looked over and laughed and then another cashier did the same thing with one of her bags.  In response the first guy did it back and suddenly I was in the midst of a cacophony of bags being banged opened, like a series of gun shots going off.  It was horrible. I stood there stunned.  I became so disoriented I could barely think and then I felt a surge of rage. How dare they make this kind of noise with those paper bags! How dare they behave this way!  I looked around trying to figure out who I should direct my anger to and noticed that not only were they smiling, some were even laughing and so were the other customers.

They were having fun!  I was astonished.  What was so incredibly painful to me, was amusing to others.  As I left the grocery store I reflected on sensory issues and how overwhelming they can be. I thought about Emma and wondered what it must be like for her.  Does she feel this way when she needs sensory input and cannot get it or is told she must turn the volume down?  I know there are certain noises she cannot tolerate, like the cuisinart.  She hates the sound it makes and will only tolerate it if I allow her to control it and put it on “pulse”, the same goes for the electric mixer.  If one of us sings along to music she’s listening to she can’t stand it and puts her hands over her ears.  (I completely understand her doing this when I sing, I’m pretty much tone-deaf and it IS painful to listen to for even those with no sensory issues, but she does this to anyone who sings along.)

After watching the video I posted above, I was grateful for the ending.  Not because it changed anything or showed some obvious solution, but because it was one human being taking the time to notice another human being in obvious pain without judgment or condemnation.

As an aside – I would love to hear from those who need and crave sensory input.  What is that like?  What does it feel like?  Is there anything you’ve done that has helped you.  Any advice or ways we can make your life more tolerable during those times?

Emma – 2007 – Auditory Integration Therapy

Em

Air Pressure, Autism and How To Make A Perfect Arnold Palmer

Em has a cold.  When Em has a cold it’s stressful to her.  She repeatedly holds her nose and blows, despite being told this will not reduce the pressure she feels in her head, she does it anyway.  Maybe it momentarily does release the pressure and that’s why she keeps doing it.  I don’t know.  What I do know is that having a cold along with a change in air pressure causes her tremendous discomfort and pain.  A friend of mine, who is also Autistic told me her head feels as though it’s going to explode when the air pressure changes.  She told me it’s so excruciatingly painful she loses the ability to speak.

While I do not share in Em’s pain due to the barometric pressure, I did manage to throw my back out Friday afternoon.  No this is not going to be a “woe is me” post, I promise.  I could barely walk on Saturday and so Richard, being the all around amazing, wonderful, practically perfect guy that he is, took Em to the Metropolitan Museum of Art, ending with the Natural History Museum where they played an extended elevator game. (Emma rides the glass elevator in the biolife section where an enormous whale is suspended from the ceiling and a video plays on a massive screen showing the beauty of the ocean and the slow, march towards its inevitable death because of mankind’s negligence and refusal to take responsibility, while Richard pops into view and pretends to scream, and Emma, safely cocooned inside the moving glass elevator hysterically laughs.)  This game can go on for a very long time.  Thankfully Emma was NOT slowed down by her cold or the pain caused by the air pressure.

By the time they returned home I was able to hobble up to the roof with Em where she insisted on wearing this outfit.  It’s a new take on the standard knight costume, a kind of King Arthur’s knight meets one of the witches from Macbeth.  Personally I think it totally works and can we all take a moment and admire Emma’s pose.  (No.  I did not set this up.  She saw the camera and struck a pose unprompted..)

Last night, having spent yet another jam-packed day going to MOMA and (yes again) to the Natural History Museum with her awesome dad, Emma’s cold had worsened only slightly and my back had not improved.  “You two are quite the pair,” Richard observed as I hobbled over to Em’s bedroom, carrying my iPad, while making (almost inaudible) groaning noises.

“I’m going to read to her and then it’s zombie time,” I warned him.  Lest any of you conclude this is referring to some form of kinky foreplay specific to Richard and me, let me dispense with this notion.  It’s not.  We are catching up on season two of the series ‘The Walking Dead’, which Richard has tried to get me to watch for about six months.  Given my weakened state I finally gave in and found I rather enjoyed it.  Lots of zombies, end of the world as we know it, great non-zombie characters and it’s only while watching a zombie show that one can truly appreciate the following conversation: “That was totally unrealistic!  Zombies can’t move that quickly.”  Or “Gross.  How can a zombie have that much blood in their skull?”  Or  “So, wait… they eat humans?  But how are there so many of them?  I mean are the zombies basically left-overs?  Why would they just bite one human and devour another, seriously I don’t get it…”

And then, as though this might explain everything, Richard asked, “Want to go back and start from the first episode?  You’ve missed a lot.”

“No.  That’s okay.  Just keep filling me in.”

So when I was jolted awake at 3:45AM by a body (Emma’s) lying practically on top of me, I just rolled over in a zombie induced state of undead exhaustion.  I heard Richard get up and take her back to her bedroom and ten minutes after he returned to our bed, having immediately fallen back asleep, I heard Emma crying.

I grimaced in pain as I made my way to her bedroom where she had the lights on and was whimpering “Mommy come.  Ears popping.  Go see Mommy nurse.”

“Oh Emmy.  I’m sorry.  Want me to lie down with you for a little while?”

“Mommy stay.”

I promptly fell asleep only to be abruptly awoken, a few hours later when my face hit the floor, having fallen out of bed, either that or Emma pushed me in an attempt to gain a few more inches of room on her twin bed.  In a dazed state I slowly stood up and found, much to my surprise, my back felt fine!

“I think falling out of Em’s bed this morning made my back better,” I announced to Richard as we got breakfast for the children.

“Really?” he said.   Then he added, “Cheaper than a chiropractor.”

“And not as painful as a zombie bite.”

As an added plus, Emma seemed to feel much better this morning too!

Lest anyone accuse me of ‘making lemonade from lemons’, I need to add that I was voted, “Most Negative” in high school, a high school, by the way, of over 3,000 students.  Just sayin’… Plus, I don’t much care for lemonade, unless it’s in an Arnold Palmer and even then limeade is preferable.

The Perfect Arnold Palmer

Fill two-thirds of a glass with brewed, cooled English Breakfast Tea, add Limeade and a splash of Cran-Raspberry juice, garnish with a sprig of fresh mint. Voila! 

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

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

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

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

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

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

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

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

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

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

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

What do you think?

Latest piece My Fear Toolkit published in the Huffington Post

The Gift of a Molar

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

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

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

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

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

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

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

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

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

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

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

Pain, Air Pressure and Autism

Emma woke up in the middle of the night crying.  Her screams of pain, the result of intense pressure in her ears, were like the sounds of an animal under attack.  Last night, having read about the intense sensory issues many people on the spectrum must continually cope with, an intensity we neuro-typicals have difficulty understanding, I felt that I finally understood.  I “got it” in a way that I hadn’t until now.

For years Emma has, periodically, complained about her ears.  When she does we rush her off to various doctors and specialists, only to be told that there is “nothing wrong.”  But those words are being said by neuro-typical doctors and specialists and to a neuro-typical there is, indeed, nothing “wrong.”  But Emma is not neuro-typical, what appears fine to us, does not feel fine to Emma.  She is particularly sensitive to the changing air pressure.  She feels unbearable pain in her ears.  We cannot predict when this will happen, though I suspect the pain she experiences is exacerbated when she spends a great deal of time in the pool swimming, as she did these last few weeks while in Colorado.  Emma loves swimming.  She particularly loves jumping off the diving board and swimming under water.  I could be wrong, of course, but my guess is, the pressure is worsened with those activities.

Last night by the time I’d woken up and gone to her, Richard had already calmed her down.  When she saw me she came to me and wrapped her arms around me, her cheeks still damp from her tears.  She preempted me by saying,  “Ah, baby.  I know, I know.  Your ears are hurting.”  Her voice sounded almost exactly like my own.  She was using the words I use.  She was saying those words with the same tone I say them.

I held her for a few seconds before following her into the bedroom.  I urged Richard, bleary and exhausted to go back to bed, while I sat with Emma.  “Have to go see nurse Mommy,” Emma said, stroking my arm.  “Go aaaaahhhhhh!” Emma made a pretend cry.  “Mommy come!  Mommy come.  I need help!  AAAAAHHHHH!”  Emma continued in a soft voice, reenacting what had happened just moments before.  “Daddy says – you have to blow your nose. Oh, I know, I know it hurts.”  Emma nodded her head up and down.  “Mommy’s here!  It’s nurse Mommy!”  Then she lay her head on my lap, pulled her blanket up around her shoulders and began sucking her thumb.  As I sat with her in the dim light of her bedroom, her head in my lap, stroking her hair I wondered what must it be like to feel a sudden shock of pain caused by something you cannot see or stop.  No matter how much you cry out for help, it isn’t lessened.  I tried to imagine, what that must be like.  How frightening that must be.  How upsetting to be the only one feeling it.  How disorienting.  As I sat there I became aware of the air pressure.  I could feel the pressure in my own ears, not painful, but uncomfortable, building the more I concentrated.  And I found myself wondering what would it be like if I felt this all the time?  How distracting it must be.  What if I felt this, but much more intensely?  What if I felt this pressure, but the pain was excruciating?  How terrifying, while hoping that someone could remove what was causing the pain.

Only we can’t.

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

“Minus One Equals Zero”

Emma reached for the last bag of Pirate’s Booty yesterday and said, “Minus one equals zero.”  Then she grabbed the bag and ate it’s contents.

I am constantly impressed with Emma’s mind and creative use of words.  I often think when I listen to her that there’s a kind of poetry in the way she phrases things, the way she will use seemingly unrelated words to describe something, such as “motorcycle bubbles” for the fireworks we see over the fourth of July.  It conjures up the noise, which she finds frightening, but also the visual image of bubbles, which I think she likes.  I don’t know if this is what she thinks of when she uses those words, but to me, it’s beautifully descriptive in a nuanced and personal way.  It’s very “Emma.”

When Emma and I did some literacy work yesterday, she was having a terrible time with a story we read and that she had to summarize.  I mentioned to Joe that we had a tough session, so when he worked with her later he used no verbal language and she was able to fly through the work.  During my session with her I was reminded of a post I read recently, written by an autistic adult who described how one day conversing and finding the correct words came relatively easily, but the following day, or even that afternoon, she found it almost impossible to express herself verbally.

I have become much more aware of Emma’s sensory issues in the past few weeks from reading other blogs written by autistic adults.  I have certainly been aware that Emma had to deal with a sensory overload, but how that manifested itself, what that actually meant to her was something I had trouble understanding.  But reading what it’s like for some other autistic people has been enlightening.  This is one of my favorite posts on the subject of language and words.  It is written by E. who has a blog – The Third Glance.  The post is entitled – Words.

Another post – Squawk? by Square 8 is another wonderful description of how talking can be akin to walking through a minefield for many on the spectrum.  Sadly this blog’s last entry was in November 2010.

Minus one equals…

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

Dionne Warwick, Somersaults and Feelings

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

What the BOE and Preppers Have in Common

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

The Hospital

This was not the post I had intended to write.  This morning at around 2:00AM Emma came into our room, her little body burning up.  She nestled in between Richard and me.  Merlin had curled himself into a tight ball near my head; it is not an exaggeration to say it was a crowded bed.  This is the second time since my surgery that Emma’s been up in the middle of the night.  What was once a nightly occurrence has, thankfully, become a rarity.  By 6:30AM Emma was complaining about the right side of her abdomen hurting.  She became more agitated and upset as the minutes ticked by.  Richard and I realized we had no choice but to take her to the emergency room.

Once there, Emma seemed less upset and after we answered the thirtieth question about her medical history (for a ten year old, it is lengthy and extensive) went over all her various hospitalizations and the doctors we’ve seen, they decided to take an x-ray to determine if constipation was the cause of her pain.  As I stood in the booth with the technician, whose nephew has severe autism and is non-verbal, I could see that constipation was indeed the problem.  Not only was there a single enormous blockage, but her intestines were filled with stool.

Once again we were confronted with the question that has plagued us off and on for the last seven plus years.  How do you help a constipated child, who refuses to eat little if any of the foods that will help her, see the connection?  Or is that not the right question?  When the supervising pediatrician came in to speak with us she gave us the same remedies I have been given by countless other doctors and specialists.  This isn’t rocket science.  It’s pretty basic stuff.  But when you’re dealing with a child who has sensory issues, making it difficult for her to know when she feels the need to go to the toilet, along with fear from past painful experiences, add to that dietary limitations and an insistence on eating a dairy heavy diet, even though it’s gotten much, much better, you have a never-ending cycle that is very, very difficult to break.

“Let us be the bad guys.  We’ll give her an enema, maybe you or her dad could help hold her down,” the supervisor told us.  And as well meaning as she was, as obvious as her suggestion may be, I couldn’t agree to it.  Having Emma held down by three or even four strangers while a bottle of saline solution is pumped into her, while she screams and fights is not going to solve the bigger issue, the issue that we have been dealing with for the last seven years with varying degrees of success – constipation.

“I know,” the doctor said, in response to my despair that we were once again being told the same thing we’ve been told by literally DOZENS of doctors.   “I’m sure it’s very frustrating.”

“Actually frustrating doesn’t begin to cover it,” I said.

And it doesn’t.  Frustration is the beginning of a great many feelings when you are forced to watch your child writhe in pain from something that is so heinous and frightening.  Having just had surgery, having, for the first time had to personally experience the hell that sums up constipation, the pain, the fear, reminding myself to breathe into the pain and relax, I can relate to what Emma is going through in a way I never could have before.  So I did the only thing I know to do.  “Come on Em.  Let’s go to the bathroom, I’ll stay with you, and then afterward we can go home.”

Emma took my hand and together we went into the bathroom where she sat with me crouched in front of her, just as I used to do every single day for so many years.  This time I looked into her eyes and said in a calm, gentle voice, “I’m here with you Emma.  I’m going to stay here with you.  You can do this.”

“I know, it hurts to poop,” Emma cried.

“Yes.  It does.  I know.”

Finally she was able to let go of at least some of the stool inside her and after another 30 minutes, we left and came home.  It’s not over, she’s still massively constipated, shes’ still uncomfortable.  We will have to insist she not eat as much dairy.  We will have to be more diligent about monitoring her.  We have no easy answers.  We have no quick fixes.  But we will get through the rest of the day, just this one day, one day, one step at a time.

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

Em’s New Shoes

A few weeks ago Emma’s teacher emailed me asking if we had a pair of sneakers we could send to school with Emma so she could participate in their gym class.  First of all, Emma doesn’t like wearing shoes, or socks, for that matter.  But when she must (which is most of the time) she wears one of two types of shoes – Uggs (winter) or Crocs (summer).   She has a couple of variations on this theme such as a pair of Ugg slip-ons that resemble black pumps (Spring/Fall) and some fake fur-lined Crocs (Fall/Winter), but as I said, Uggs or Crocs are the only two brands of shoes her feet have seen in recent years.  So, no.  We do not have sneakers to send into school.  This weekend I decided to change that.

“Hey Em.  Today after gymnastics I’m going to take you shoe shopping for a pair of sneakers.”  I smiled enthusiastically at her and winked at Nic who muttered, “That’s probably not such a great idea, Mom.”

“Together,” was Emma’s reply.

“Yes, we are going to go together.”

We are going to go together,” Emma repeated.  “Just you and Mommy.”

I put my hand up and pointed to her, “Say it again.”

“We are going to go together, just you and me!”  She pointed to herself when she said me and bounced up and down.

“Yes!  That’s right.  Just you and me.”

Later in the sporting goods store we first went upstairs where they have their snow boots, rain boots, hiking boots and rougher terrain shoes for children.   I figured these might be an easier sell as most of them have velcro straps, which do not require tying shoelaces and besides these looked more in keeping with some of the shoes she’s agreed to wear in the past.  “Hey Em.  Do you like any of these?”  I motioned with my hand in a sweeping gesture toward the wall with shoes.

“Yes!”  Emma said.

“Really?”  I was surprised by both her answer and her apparent enthusiasm.  “Which do you like?”

“This one.  I like this one.”  She reached up and grabbed the one pair of shoes they had that did not fall into the rough terrain, outdoor shoe category. In her hand was a little black pump.

In patent leather.

With a tiny leather bow on it with, what looked like, a fake pearl.

And fancy stitching.

“You want to try on these?”  I asked.

“Yes.  I like these,” she said.

First I had her try on at least a dozen pairs of traditional sneaker type shoes.  I even took her downstairs where they have their running and gym shoes.  Emma was terrific about trying on lots of different shoes, but each time she would say, “Too tight!”  or “Too big!”  or “I don’t like these!”  or “No, no, no, no!”

Finally back upstairs we went and she tried on the black patent leather shoes.  “Do you like these, Em?”

“Yes.  I like them.”

“Will you wear these if I buy them?”

“Yeah!”

“Okay, Em.”

Em’s new shoes

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