Tag Archives: autistic

Emma’s Ears

Posted on March 10, 2011 by | Leave a comment

For the last few days Emma has been complaining that her ears are popping.  I think it’s caused by changing air pressure, which she is extremely sensitive to, but maybe it’s indicative of something more, so we will take her to the pediatrician this afternoon, yet again.  Interestingly, I have noticed my own ears “popping” or more accurately the pressure in my ears.  We have had a change in the weather, something that might explain the sensations Emma is experiencing.

Last night Emma was cheerfully playing in her room and then there was silence.  I was in the living room reading.  I looked up from my book and waited.  Animated chatter followed by silence never bodes well.  So it wasn’t a surprise when I heard her whimpering and then, “I need help!  I need help!”

“What’s wrong Em?” I called.

“Ears popping, I need help!”  she cried.

“Okay, Em.  Don’t worry.  It’ll be okay,” I told her.

I tried to get her to yawn and when that didn’t work, demonstrated how to swallow, taking big exaggerated gulps of air and finally when none of those things worked, offered her a piece of gum.  “No gum!” she cried.

Taken aback and baffled, as she has never rejected the offer of gum, on the contrary, she usually requests it, I asked, “Why not?”

“No gum!” Emma sobbed.

“Okay then try to yawn again,” I suggested.

Emma grabbed her nose, clamped her mouth shut and blew until her face turned red.  This technique terrifies me as I imagine she’s blowing out her ear drums or doing untold damage, but my worries appear unjustified.

“There,” she said. “Ears all better,” with which she stood up and ran back into her room where I could hear her bouncing on the bed.

I stood in her doorway, “You okay now, Em?”

“Mommy go,” she commanded.

A few minutes later I could hear her crying, “Popping!  Ears popping!  I need help!”

And so it went last night for over an hour, back and forth, with me feeling increasingly impotent as Emma cried out in pain.

Emma holding a cold bottle of water to her ear, hoping it will alleviate the pressure

I no longer remember when we first heard about her ears bothering her, but it has certainly been within the last year or two.  We have weeks when they don’t seem to bother her and then a few weeks when they do.  Other than keeping a supply of gum on hand, it’s not clear what else we can do.  Her pediatrician checked her ears just a few weeks ago – they were fine.  We will go in again today, but my guess is they will again be fine.

Emma is sensitive to things I am unaware of.  However as I sit typing, I am hyper aware of the continuing pressure in my own ears.  But I know it will eventually go away and the discomfort isn’t so bad, so I occupy myself with work and all the things I must get done today.  Is this what Emma experiences?  Is her discomfort the same or much, much worse?  Does she feel something more extreme?  Her hypo and alternatively hypersensitivities make things I consider an annoyance, unbearable for her.

So we go to her pediatrician today, tomorrow we have an appointment with her neurologist and I will mention all of this to him as well.  Perhaps they will have some ideas.

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Skill Set

Posted on March 8, 2011 by | Leave a comment

People talk about their particular “skill set” for this or that job.  My “skill set” does not include great coping skills.  Just because I have a daughter who happens to be autistic doesn’t mean I innately know how to manage every situation, which comes with a child with special needs.

When Nic was first born, I opted to go the natural route and though the labor was seemingly endless, (38 hours) once he appeared, we were back home by that evening.  The first night was utter hell.  Every time his breathing changed I was up like a shot, staring intently at him wondering whether his congested breathing was normal.  I remember thinking this was why mothers stayed that first night in the hospital.
“I wish he came with a manual,” I said to Richard.

But he didn’t.  As all parents know, our children don’t come with a “Coping Skills for Idiot Parents” guide book as much as we wish they did.

Emma was born, again natural child birth and this time in a free standing birthing center.   She was born at 4:30PM and we were home by 9:00PM.  I felt something akin to terror because in addition to being a completely different infant than Nic, she seemed so uncomfortable, much more than Nic had, who was my only frame of reference.   I remember thinking that I had the whole mothering thing down, having honed my skills on Nic.  And then there was Emma, proving me wrong from the first breath she took, which came out as more of a disgruntled moan than a breath.

“What’s wrong with her?” I asked the midwife.  Her displeasure from that first second the air touched her skin all too apparent.  I knew right away I had no idea what I was doing.  I was in over my head.

I continue to feel that way now and Emma just turned nine years old in January.  She is growing like a weed on Miracle Gro, with no sign of slowing down.  You’d think I’d have this whole mothering-a-special-needs-child-thing down by now.  It turns out I’m a slow learner.  I do not understand what she says a great deal of the time.  I don’t have some sort of internal interpreting device where she says something incomprehensible and I’m able to translate.

“What did she say?” people often ask me.

I haven’t a clue.

“Why did she do that?” people will question.

Don’t ask me.

Every now and again I have an idea, but I also know there’s a 50% chance I’ve got it wrong.

When Emma begins screaming that her ears are popping and she needs help, there is a second where I wonder what I can possibly do that will make a difference.  I go through the predictable routine, try to get her to yawn, offer her a piece of chewing gum, try to speak calmly to her and not give in to my desire to yell back.

When both the children were toddlers I was pushing them in their double stroller, (the Hummer of all child transportation devices ever invented) when we passed a woman screaming at her child.

“You are behaving like a brat!” she yelled at the little boy who couldn’t have been older than five.  “A brat!” she continued.  “You cannot get what you want by screaming!” she screamed.

It was one of those moments when you put your head down and just keep walking.  Unless you have it in you to say something kind and loving to this screaming stranger, do not stop, do not entertain the idea you’re input will be taken as anything other than criticism or condescending, just keep walking.   But it exemplified what almost all of us have done at least a few times in our lives.  The hypocrisy we all catch ourselves in if we look deep enough.

Coping?  It’s not in my skill set.  But I keep showing up and maybe that’s a skill in and of itself.

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The QEEG

Posted on March 4, 2011 by | Leave a comment

Every few months we take Emma in to have another QEEG done.  (Developed about 25 years ago, a quantitative EEG – a measure of brain wave activity is 94% correct in being able to diagnose ADHD as well as see which areas of the brain are overly active or under active.)  Yesterday afternoon, we took Emma in for yet another QEEG.  They hook up 21 electrodes to her head and have her sit still with her eyes closed.  She must be in a relaxed state for them to get an accurate reading.  It takes anywhere from 25 minutes to over an hour to get about 5 minutes of data.

Emma knows the drill.  She sits in the chair as the technician applies a sticky goop to a metal round end of a long colored wire.  The other end is plugged into a machine, which is attached to a computer and the now sticky metal end is applied to specific spots on her head and then covered with a thin gauze.  The first time we had this done, Emma was five or maybe six years old.  It took more than two hours.  More recently, however, we were in and out in less than an hour.  Emma doesn’t seem to mind, though it’s difficult for her to sit still for more than 30 seconds at a time without moving her forehead, scratching, talking, opening her eyes, scrunching her face up or any number of other things that serve to hinder the process.

Yesterday was no different than any of the other times we’ve gone in recent years.  As we sat, I was aware of how much I want her brain waves to tell us things we are not seeing manifested in her behavior.  A cognition, a repairing of the language areas in her brain, a symmetry and regularity which has so far, alluded us.  It is impossible for me not to fantasize about coming to meet with her neurologist in another week or so and have him say gleefully, “Congratulations!  She has a neuro-typical brain!!”  What parent doesn’t want to hear those words uttered?  It’s like winning the lottery.  “Oh come on?  Are you sure you’re looking at the right chart?!”  “Sure you have the correct name?”  To hope for this kind of pronouncement is dangerous, I have found.  The let down, the inevitable sadness one feels when these words are not uttered is too painful to describe.  And even when we have heard from her  doctor that the QEEG is showing “significant progress” we are left wondering if our definition of “significant” needs amendment.  Our hopes and dreams are perhaps too lofty.  Our desire to see her one day mainstreamed is, perhaps unrealistic. But what’s the alternative?

So we placate ourselves by reminding each other she continues to make good progress.  Her handwriting is coming along beautifully.  She has gotten the hang of finding almost all 26 letters on the keyboard, as well as “.”.  We move ahead with her literacy program, something which has given us more hope than anything else.  We continue to work with her on the proper use of pronouns.

And we watch and we wait.

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The World of Autism

Posted on March 3, 2011 by | 2 comments

This morning we are going to an open house of yet another special ed. school.   The first time I toured a school for autistic children, Emma had been diagnosed a few months before, in the fall of 2004.  We were still in shock and reeling from the new world we suddenly found ourselves in.  The school had locked doors and a security guard at the front desk.  It was clean with walls painted in cheerful colors.   The unmistakable high-pitched keening cry, a sound one only hears coming from an autistic child in distress, emanated from a number of the classrooms.  I remember fighting back the urge to flee.  All the parents were herded into a little room with cafeteria-style tables and chairs.  No one sat down, as though to do so was more of a commitment than any of us were willing to make.

It was my first foray into the world of special education schools where the parents do not speak to one another with the cheerful optimistic small talk one finds in a regular school setting.  The question and answer period is often marked with parents breaking down in tears mid sentence.  There is an overlay of sadness, often despair, parents (and I am describing myself as much as I am of others) who are still in a state of profound disbelief.  There are always a couple of parents who seem to have made it through the mourning process a bit quicker than the rest of us, the ones who seem to have found a level of acceptance, which the other parents have yet to realize.

Visiting various schools now, is different in that Richard and I know what to expect.  We have gone to so many in the intervening years since Emma’s diagnosis, we are better prepared.  And yet, I am still caught off guard, on those rare occasions when I find myself unable to contain my emotions in the middle of an interview.  The tell tale break in my voice, the constriction in my throat, the flood of tears, which inevitably follow and the attempt to pull myself together.   The admissions directors are so used to this they all have Kleenex boxes prominently placed on their desks.  They take it in stride and are almost always sympathetic, brushing aside ones apologies.  Nothing like a child with special needs to make our facades crumble.  Talking about the weather just doesn’t hold much appeal when your child’s life is on the line.

“But I didn’t realize it was so serious,” someone I know said to me once when I said I couldn’t donate to his charity, citing Emma’s autism as the reason our finances were stretched so thin.

Perhaps when compared to other childhood afflictions, autism seems like lightweight stuff, but talk to a parent with an autistic child and you’ll come away with a different sense.  We are all desperate.  I have yet to meet a parent who isn’t.  Some of us have more acceptance, have managed to find ways to deal with our endless stresses better or are better at putting on a cheery front, dig a bit and the darkness, the pain is always there.

I have a great friend who said to me once, “Don’t take this wrong, but whenever I’m really down about something going on in my life, I call you and feel much better. “

I know what she means.  I have a good friend who’s going through a truly horrific divorce at the moment, everyone’s behaving badly, their child caught in the middle and I feel such relief, because in addition to what we are going through with Em’s autism, we could be in the midst of that as well.  Thankfully we are holding onto each other, leaning into one another with the full weight of our emotions.

“You’re like an ox,” Richard said to me once referring to my healthy constitution.  Then he broke into a rousing rendition of – “She’s a brick… (beat) house, mighty, mighty…” making us both collapse with laughter.

Richard and I are strong and as a team we’re even stronger.  It’s going to take more than autism to bring us down.

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The Isolation of Autism

Posted on March 2, 2011 by | Leave a comment

Much has been said about the isolation accompanying autism.  Because of the problems autistic children have in communicating, isolation is often an issue.   Even those who are verbal, often have problems with repetitive language, are unable to engage in “small talk” or cannot move fluidly from one topic to another, thus separating them from their peers.  We are not able to discuss with Emma how she feels about not having a group of friends she hangs out with.  She isn’t able to tell us what it’s like for her to live in our world.  These are conversations we hope to engage in with her one day, but at present, they are not something we can have.  The best I can do is imagine and speculate what it must be like for her.

However there is another isolation I can speak of and that is the isolation felt by the parents of an autistic child.  It is a feeling Richard and I have grown accustomed to.  It comes with the territory.  Most of the time it doesn’t bother me, but every now and again, when something happens which makes me feel particularly sad, I have no one other than my husband whom I feel I can turn to.  (I am fortunate to have that, as many people do not.)  Soon after we received Emma’s diagnosis, Richard formed a support group.  There were anywhere from 12 to 5 of us who met once a month.  Richard was hit harder with the sense of isolation than I was, because as a man, it was much more difficult for him to find other men who were willing to sit through the discomfort of seeing their friend upset, knowing there was nothing they could do to fix it.  Women have an easier time with that, it seems.  In any case, Richard formed a support group, where he was almost always the only man.  We met for a few years and then people fell away over time because of work demands or they moved out of the city and eventually the whole thing dissolved.

Emma’s school has a monthly parent group.  I attended it a few times years ago, but it was moderated by a well meaning and no doubt, extremely capable young women, who did not have an autistic child or any children for that matter, and I felt very much an outsider, not a great feeling to have in a support group and so I stopped attending.  Over the years I have come to rely on a group of women with whom I meet once a month.  We’ve been meeting for going on six years now, incredibly, and they have been there for me since the beginning.  I am incredibly grateful to this group of women, but even so, there are days, like today when I do not feel I can call even one of them.

Sometimes, not often, but every now and again, I am overwhelmed with what I can only describe as grief.  Grief that Emma has not progressed more, that anything resembling a main stream school is out of the question for her, grief that she is not able to carry on a conversation that a two year old is capable of having.   Suck it up, I tell myself.  There is always someone out there who has it worse.  Do something for someone else.  Pick up the phone and call someone who is struggling.  Ask them if you can help.  So I do.  These small, tried and true actions are all I know to pull myself up and out. It’s not that any of these things will change anything, it’s that by doing these things, by reaching out to help someone else, I am changing my own despair, even for a few minutes.  There’s a whole world out there of suffering.  Sometimes helping someone else, is the best I can do.

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Home

Posted on March 1, 2011 by | Leave a comment

“Go on airplane?” Emma said yesterday morning.

“Yes, but first we’ll have breakfast, then study room, then brush teeth and then go on the airplane,” I told her.

After listening to me, Emma nodded her head and said, “Go on airplane.”

All that other stuff was filler, it was the airplane part Emma cared about.  “Right,” I said.

At the Aspen airport there was the usual congestion, lines, children running around, harried people, stern looking airport security.  When flying with Emma I used to bring along a letter from her school saying she was autistic etc.  But it never seemed to make a difference, so I stopped.  Despite the fact Emma is the world’s greatest traveler there are problems which inevitably arise when flying with her.  Little misunderstandings, which I’ve described in previous posts, not important enough to spend time going into again.

Emma, as I’ve written before, will not eat anything served on the airplane.  She will not drink any of the liquids they serve, the apple juice on the Denver to New York flight is out of the question as it is served from a can, something she won’t tolerate, she will only drink water from a water fountain, impossible when in Aspen, difficult even in New York City during the winter months and unavailable on airplanes.  So we brought two of her last, appropriately packaged vanilla milks and pirate booty, some grapes – they must be seedless red grapes, a banana and some fruit leathers.  All of which is fine, except the vanilla milks cause us problems every single time.  Curiously in New York I will tell security she’s autistic and we are almost always cheerfully waved through, but never in Aspen.  The Aspen airport is a stickler for going through the correct protocol, no matter how tedious.  I know to take the vanilla milk out, show it to airport security and wait for the predictable grumblings from the people behind us as the entire line is put to a stand still.  I hate the “pat downs” where you are taken aside and searched, so this time Joe volunteered to be the one to endure it, while I watched Emma.

Traveling alone with Emma is particularly daunting as she might run off and no one appears to have the slightest understanding of autism and the difficulties this presents to the lone parent who is being pulled aside, frisked, trying to keep an eye on the carry on as well as calling to Emma who often disappears into the crowds.  To say this is a tense and upsetting time would be putting it mildly.  It is nerve wracking and often frightening as one never knows if Emma will run off – to the bathroom, try to exit the area, run outside to an awaiting aircraft headed to – who knows where – suffice it to say, it’s not fun.

But yesterday morning Joe, being the trooper that he is, volunteered and so they went through his and Emma’s carry on, with all their various swabs and strange looking equipment, it took about ten minutes all told, and I kept reminding myself, as we waited, that this was, though annoying, nothing more than an inconvenience in this post 9/11 age, which we all find ourselves in.

Once we made it through security all went fairly well, the weather was perfect, the passengers were all boarded when I became aware of two little girls sitting in the row behind, their parents, directly behind me and Emma.  The little girls couldn’t have been older then 3, their voices still had that high pitched squeaky sound only heard in a toddler.  The father helped get them settled, made sure they each had their stuffed animal, there was some fighting between the girls about who’s special toy was whose, but other than that it was what any parent of two toddlers would expect. (Not that I would know, but I’m guessing here.)  Some bickering, lots of talk from the parents about the importance of sharing, requests from the girls for candy, cheerios, something to drink.  It became comical when the father, having spent at least 10 minutes procuring various sweets and snacks, muttered to his wife, “Can I just sit for two seconds without feeding someone?”

Meanwhile there Emma was, content to stare silently out the window, happy to be on an airplane and going home.

Inspired by the family behind me, I asked, “Hey Em.  Do you want a snack?”

“No,” she said and continued to stare out the window.

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The Bakery

Posted on February 28, 2011 by | 1 comment

Emma is fussy about what she will eat and drink.  The type of food is sometimes less important than the packaging.  If the packaging changes or varies, even a little the item is rejected.  As with so much in autism it is all about regularity and routine.  Emma is completely thrown by the unexpected when applied to things she is accustomed to.

For the past two years Vanilla Milk from Horizon has been on Emma’s top five list of favorites.  It’s the little milk in a white and purple box with plastic wrapped straw glued to the side.   Except Horizon changed the packaging about three months ago – the colors remain the same, as do the graphics, size, shape and even the little straw. What has changed is they no longer use a coating to make the little boxes appear ever so slightly glossy.  The boxes are now a bit flatter looking.  Honestly, it wasn’t until Emma stopped drinking them, that I realized they had changed.

When we arrived in Aspen, we had a case from Christmas in the mudroom with the original packaging and Emma immediately grabbed one.

“Vanilla Milk!”  she said with pleasure.

We are nearing the end of that case and so she will boycott them once again.  Not that I care much as they are one of the least healthy things she consumes, but I do mind that she won’t eat the Cheerios we buy here, haven’t figured out why.  We bring her special bread with us, which we cannot get out here and her jam, so it was with some dismay when she refused to eat any of those things this time out, as well.  Last night I asked her what she wanted for dinner.  I told her what I was having and asked if she wanted some.  She always answers no, so it wasn’t a big surprise when she again said, “No?” as though it were more of a question, than a statement.

“Okay, so what would you like?” I asked.

“Bread,” she announced and handed me two pieces of her bread, which she had buttered and placed together, like a butter sandwich.

“Oh!” I said with surprise.  “You don’t want it toasted?”

“Yes.  Toast.”  Emma said.  Then she handed the bread to me and said, “Put it in the bakery.”

“In the bakery?” I repeated, looking around, wondering what she meant.

“In the bakery?” she said again gesturing at the oven.

“Oh!  You mean the oven.  You want me to put it in the oven to warm.”  I am often amazed by Emma’s creativity in her choice of words.  She has seen me bake bread in the oven.  She knows bread comes out of the oven and more often comes from a bakery.

“Yes.  Make it nice and warm!” Emma said.

“In the oven,” I said.

“In the oven,” Emma repeated.

“We have to heat the oven first and then we can toast it.  But we have to get a cookie tray to put it on, otherwise the butter might drip out,” I told her.

When her bread was done, I opened the oven.

“You have to stand back,” Emma said sternly.

“It’s okay Em.  Here, I’ll take it out and you can take it to the table.”

After Emma ate her bread she said, “Another bread from the bakery?”

“Yes.   We can do that.  You make it and I’ll put it in the oven.”

“Make it nice and warm,” Emma said.

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Making Friends

Posted on February 25, 2011 by | 1 comment

When Emma and Joe picked me up yesterday evening from the store, Emma launched into the list of all the things they’d done through out the day – swimming, Justin Beiber movie in 3-D, Bowling in El Jebel, except there was a tournament going on so they didn’t have any free lanes with bumpers, the Wheel Carousel, which is really the metal merry-go-round in El Jebel.  Emma had a blast.

“Emma did something amazing today,” Joe said, when Emma had finished.

“What?” I asked.

“She was doing some great interacting and initiating with another girl at the playground.”

“Really!  What did she do?”

“She asked a girl to come ride the merry-go-round with her.  She said – Girl, can you ride on the carousel with me?” Joe laughed and then said, “We’re still working on the “girl” part.”

“That’s fantastic!” I said.

“Want to ride with girl,” Emma said from the back seat.

“Last week we were working on saying – My name’s Emma what’s yours? – We’re still working on that,” Joe said.

“Hey Em,” I turned to look at her.  “You can say – Hi! My name’s Emma, what’s your name?”

“Girl,” Emma said.

“No Em.  You can’t call her girl.  She has a name, just like your name is Emma.  Joe’s name is Joe.  She has a name too.  Maybe it’s Cynthia or…

“Cynthia.  Girl,” Emma said.

“But, Em, we don’t know what her name is.  That’s why we have to ask, but we can’t call her girl, because maybe her name is…”

“Cynthia,” Emma broke in.

“Maybe, but maybe her name is Lisa or Lily or Sally.  We don’t know.  Her name could be anything,” I tried to explain.

“Cynthia!  Do you want to ride on the carousel?”  Emma said.

I looked over at Joe.  “I think I’ve made it worse.  I wonder why it’s so hard for her to understand though.”

“I think she understands people have different names.  I think it’s hard for her to role play or understand the way we’re explaining it,” he said, ever the diplomat.

“Right, she’s taking it all literally.”  As we drove up Red Mountain I thought about how instead of realizing we’re saying – maybe her name is this or that – Emma’s hearing me say – what’s her name? and she’s answering that she’s a girl.  That’s what she is to Emma, a girl and since she doesn’t know her name, the name becomes secondary.  I don’t know that this is what she’s thinking, but it would make sense if she were.  It’s the same when I’ve asked her – “What’s your doll’s name?”  The idea that Emma could make up some arbitrary name for her doll seems to be something she cannot conceive.  So she answers – Doll.

“Was the little girl offended?” I asked Joe.

“Oh no.  She said – I’m sorry.  I have to go home now – Emma understood.”

For Emma to reach out to another child is definitely noteworthy.  Children are typically much more difficult for Emma to connect with as they can be so unpredictable.  It’s always wonderful to hear when Emma is making an attempt.

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“It’s Mommy!”

Posted on February 24, 2011 by | Leave a comment

Every evening Joe, Emma’s therapist, and Emma pick me up from my store in town.  Emma pushes the door open and, upon seeing me says, “Hi Mommy!”  Then she points at me and says, “It’s Mommy!” as though this were the first time she’d seen me in a very long time.

“Hi Emma!”  I respond.  “I’m so happy to see you!”

Often she’ll stand back from me.  Looking at me with an expression of pleasure mixed with something else I haven’t been able to decipher, she usually says again, “It’s Mommy!”

It’s almost as though she doesn’t expect to find me there each evening.  As if she thinks I might be somewhere else and my presence is just a fluke.  Or perhaps it’s that she’s not used to seeing me at the store.  We’ve only been open a few months now and normally Joe, Emma and I are home in New York where I go to my studio each day.

After introducing Emma to whoever might be in the store when she comes, I almost always ask her, “What did you do today?”

“Go back to Granma’s house with Mommy?”  Emma will answer with an edge of anxiety.

“Yes, I’m coming with you,” I reassure her.  “What did you do today?”

Typically Emma will respond with a list of things she did.  Though this is by no means a comprehensive list.  Many times it’s not clear whether she is stating what she actually did, what she might have done in the last few days or what she wanted to do, but didn’t have time to.   “Really?”  I’ll say.  “You went bowling, sledding and skiing?”  I’ll ask, looking to Joe for confirmation.

Joe likes to let Emma speak for herself and so he usually will wait to see if she responds appropriately.  If she’s just said something completely outrageous he’ll interject, but more likely Emma will correct herself on her own as she did last night.

“No skiing,” she said.  “Bowling and wheel carousel.”

“Oh!  Did you find a real carousel?” I asked, wondering if this was a new addition to the Aspen area.

“Yeah!  Wheel carousel!”  Emma responded.

“Where is it?” I asked Joe.

“It’s a metal wheel in El Jebel,” Joe explained.

“Oh, like a merry-go-round?”

“Yes.”

“Did you have fun?” I’ll asked.

“YEAH!”  Emma said.  She almost always will respond to that question with enthusiasm.  No one can accuse Emma of not being happy.  She spends the greater part of her day in a state of bliss, always has.

When we drove home Emma waited in the back seat, allowing me to get out first to collar the dogs, before vacating the car.

By the time she appeared in the kitchen I had hung up my coat and was talking to my mother.  “It’s Mommy!”  Emma said, pointing at me as though she hadn’t just spent the last twenty minutes with me.

Then she held out her arms to me, indicating that she’d like me to hug her, which I never pass up the opportunity to do.

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Tiny Steps

Posted on February 23, 2011 by | Leave a comment

I keep waiting for the kind of miraculous progress you only find in movies or works of fiction.  Every now and then I’ll hear a story about a child who has recovered (or as they say in the field – lost their diagnosis) but these are so rare they fall into the category of fantasy in my mind.  Every now and then, when I find myself longing to wake up one morning and have Emma jump into bed with me speaking in full sentences, a look of cognition unmistakable on her face, I must remind myself of all the steps, the tiny steps of progress she makes everyday.  It isn’t just about making myself feel better, it’s about charting her progress.

Last night she went over to the phone in the kitchen.

“Hey Em.  Do you want to call Daddy?” Joe asked.

“Call Daddy?” Emma responded in her typically enigmatic way.

“I’ll say the numbers,” Joe prompted.

Emma dutifully found the right buttons to push and held the receiver up to her ear.  “Hi Daddy!”  Pause.  “Hi Daddy!”

I stood next to her, wondering if she’d gotten the answering machine.

“Hi Daddy!”  Emma said again.

I tried to listen to see if I could detect Richard’s voice.  I didn’t hear anything.  “Did he answer?” I asked Joe.

“Yeah.  He picked up.”

“I’m fine,” Emma said.

Silence.

“Yes.  Glenwood rec center.  Swimming, ice skating,”  Emma said into the phone.  A clear response to the question – What did you do today?  “Sledding, skiing…”

“No, you didn’t ski today,” I interjected.

“No skiing,” Emma said.  “Sledding.”

By this point I had my ear next to her cheek and could hear Richard’s voice.  “I miss you, Emmy,” I heard him say.

“I miss you, Daddy,” she said.

The conversation went on a bit longer, but I was so overcome by the fact she’d said – I miss you Daddy – in response to him saying, I miss you.  Usually when Emma repeats us she repeats us in total.  In other words she would say – I miss you Emmy.  An exact replica of his sentence to her.  But she didn’t do that.  She responded appropriately with the appropriate pronoun.  I was impressed.

I know this is small, but to us, it’s HUGE.  A huge step for Emma to express emotions regarding another person.

Later I said to Richard, “That was completely unprompted!”

“Really?” he asked.

“Yes!  I wasn’t prompting her to say anything,” I told him.  “She said it all on her own.  It’s the Aspen air out here,” I said, referring to our theory that there’s something in the air out here, which seems to inspire an uptick in her language and cognition.  We have seen it every time we come here.  Blame it on Aspen, blame it on all the exercise she gets out here, blame it on anything, we’ll take it.

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Flying with Emma

Posted on February 18, 2011 by | Leave a comment

Emma is a joy to travel with.  Unlike most children, she sits quietly in her seat and is content to listen to music, look out the window, watch a video or look at books.  But there are certain misunderstandings, which inevitably arise when traveling with Emma as well.

Yesterday as we boarded the airplane leaving New York City to Denver, a nice woman behind us asked if Emma was 9.  I told her she was and she replied that her daughter was 9 too and she understood how hard it could be to travel with a nine-year old.  I said, “Oh, is your daughter autistic?”

The woman looked at me in surprise and said, “No.  She’s nine.”

It was one of those peculiar conversations where you realize you’ve misunderstood the intent of the other person.  I immediately thought, because Emma kept getting out of the line leading to the aircraft, that she knew Emma was autistic.  But it turns out she had no idea and was simply commiserating with someone who also had a nine-year old child and was flying with her.  My first impulse was to say, “Oh no.  Emma is great to travel with.  She’s not like that at all!”  But I decided it was best to keep walking and find our seats.

Later during the flight when Emma needed to go to the bathroom, the flight attendant said, “Poor thing, she’s still asleep,”  as Emma kept trying to push open the door to the bathroom which was occupied, despite my repeated attempts to stop her.  Again I just smiled.

Later on the flight from Denver to Aspen, (we were one of the lucky few who actually made it into Aspen yesterday!) the flight attendant leaned over to Emma and said, “Do you have your seat belt on?”

“Umhmm,” Emma said, curled up on the seat by the window.

“Really?” he said.  Where?  Do you have it around your chest, your knees?  I don’t see a seat belt.”

Emma just smiled at him and nodded her head.

“Emmy, put your seat belt on,” I interjected as I could hear the growing irritation in the harried flight attendant’s voice.  She immediately did so.

“Oh!  So you weren’t telling me the truth, were you?” the flight attendant said.

I put my hand gently on his elbow and said, “She’s autistic and didn’t understand you.”

“Oh dear.  I’m so sorry,” he replied before quickly moving along the aisle.

And so it goes.  This sort of thing happens constantly with Emma.  People assume she’s fine, she looks fine after all, and respond accordingly.  There’s always a moment when either I say something or they begin to realize they are dealing with someone who is a bit different than what they thought.  It’s a surreal moment, when the other person is caught off guard, before they’ve had time to make an adjustment.  Usually people are incredibly kind, very occasionally we meet someone who isn’t.   I don’t have any one method of responding.  Often I say nothing.  I mean what’s the point really?

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Routine

Posted on February 16, 2011 by | Leave a comment

Emma is not alone in liking her routines.  She is most comfortable when she knows she will do something she enjoys or is use to.  What separates Emma from the rest of us is that instead of being able to adjust when her routine is disrupted, she is thrown completely off-balance to a degree that often catches even us by surprise.

Last night Emma went through her nighttime routine of getting ready for bed.  After her teeth had been brushed she came to find me in the back where I was reading.

“Just five minutes,” she said as she got into our bed.  “Just five minutes with Mommy.”

“Hey Em.   Okay five minutes, then you’ll go back to your bed,” I agreed.

About ten minutes later I looked up from my book and realized Emma had fallen asleep.  There was a moment when I wondered if I should just let her sleep and try to carry her into her bed later, but she’s gotten so big, short of carting her out on a gurney, this is no longer an option.

“Hey Emmy,” I whispered as I put my arm around her.  “You have to go to sleep in your own bed.”

She resisted me.  “Stay here with Mommy,” she muttered.

“Come on.  I’ll take you back to your bed.”  I held out my hand and waited for her to get up.

“Go with Mommy into the other room,” she said.

Ever compliant, she allowed me to lead her back to her own bedroom where she got into bed.  “Mommy sing a song?”

Having sung her a lullaby I went back to my book, relishing in the fact Emma was back asleep in her own bed without a fuss, something I am still consistently surprised by.

Half an hour later, cries from Emma’s room could be heard.  She tearfully offered us her flashlight, a gift from my brother, which glows in the dark.  “It’s broken,” she sobbed.

We tried replacing its batteries with no success and finally placated her with promises of repairing it in the morning.

Another half hour went by and then there Emma was, like a spectre, at the foot of our bed.  “Mommy come!” she cried.

This went on for about an hour.  Emma would tearfully return to her bed, one of us would sit with her for a few minutes, tuck her in, say good night and leave, only to have her reappear ten or fifteen minutes later, crying about something else.  It’s like watching a pin ball ricocheting around, from one thing to the next until eventually Richard took her back to her bed and for whatever reason, this time she was able to go back to sleep.

Emma is sensitive to the slightest variation in her routine.  It is something we know about her and do our best to accommodate.  When she was little we use to mix things up on purpose.  We tried to avoid routines with the mistaken idea that if she were not allowed to have any routines, she would learn to adapt to change more easily.  But this proved wrong and impossible.  Emma would go along with things as chaotic as they might be, but the instant we did something, anything more than a few times, she would become fixated on doing the same, over and over again.  In addition the children’s school, our own work requirements, all need a schedule, as do regular bedtime, meals etc.

There are a number of studies being done on the link between autism and obsessive-compulsive disorder.  I don’t know if Emma has a comorbid diagnosis of OCD, but until one witnesses such behavior, it is almost impossible to explain the panic, the sheer terror, disruption causes them.

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Monster Bugs

Posted on February 15, 2011 by | Leave a comment

Last night I pulled out the dozen or more non-fiction children’s books I have for Emma.
“Pick two,” I instructed, fanning them out for Emma to see.

Emma pointed to Monster Bugs & Escape North – The Story of Harriet Tubman, bypassing Volcanos, Whales, Big Cats, Thomas Jefferson and George Washington’s Dog. “This one?” Emma said.

“Okay.  Monster Bugs and Harriet Tubman, it is!”

“Say it with your mouth closed,” Emma said, putting her hand over my mouth.  “Monster Bugs!” she demonstrated with her lips together so that it sounded more like “mummerbum.”

I began reading in an animated voice, lips sealed as Emma shrieked with laughter.  “Hab you eber looked ab a bug up clobe?” I read.  Every time I opened my mouth to annunciate the words she would cover my mouth with her hand.  “Emmy stop!” I said, twisting away from her hand.

“Mouth closed!” Emma laughed.

“Okay, one more sentence with my mouth closed and then we’re going to read it the other way,” I told her.

Nic, who came to see what all the laughter was about, sat next to me on Emma’s bed.  “Don’t worry Mom.  I’ll make sure she doesn’t cover your mouth again,” he reassured me.

“You might see horns…” I began, as Emma clapped her hand firmly over my mouth.

“Emma!  Let Mommy read the story,” Nic said, laughing.

“But the beetle fires boiling-hot gas from its rear end,” I read.

“I love this book,” Nic said, peering over my shoulder at the picture of the beetle shooting gas into an unsuspecting mouses mouth and nose.  “That is so awesome!”

“Mummerbum!”  Emma laughed.

As we continued to make our way through the book, with Nic asking for clarification on specific bugs, particularly the more gruesome and scary ones and Emma repeating the words with her mouth closed, I thought of how when I was pregnant with Emma I looked forward to reading stories to both the children.  When Emma was little she didn’t have any patience for books and only was interested in them if we allowed her to hold them so she could flip through their pages.  The book and its pages interested her, the act of flipping the pages methodically without really looking at the pictures seemed far more interesting to her than the story within the book.  But in the last few years her interest in books has increased and now she seems to genuinely want us to read to her, even requesting specific books while rejecting others.  It was wonderful to see her looking at the illustrations, pointing to the hairy tarantula while saying, “Maranmula!” with her mouth closed.

Nic was impressed with the Stink bug and the Praying Mantis who cleans its face like a cat after consuming a baby bird.

When I finished reading Monster Bugs, we moved onto Escape North!  A quarter of the way through, Nic nudged me and pointed to Emma.

I looked over to see she had fallen asleep.

“We’ll finish this one tomorrow night,” I whispered to Nic.

“No!  Read me the rest,” he said.

“Okay.  I’ll read it again to Emma tomorrow.”

“Good idea, Mom,” Nic said snuggling down next to me.

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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.

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Visiting

Posted on February 10, 2011 by | 2 comments

“It’s Mommy!  Mommy come to visit!” Emma said this morning when she saw me.  It’s an odd feeling to have one’s own child, a child one lives with and sees on a daily basis, exclaim with apparent happiness that I’ve come to visit, especially when I am in my own home.  My first thought was that as Richard and I went out the night before and I only saw Emma for a brief period before we left, she was indirectly expressing her feelings that I haven’t been around enough.  Then I began to feel guilty and consoled myself with the fact that I will not be going out again in the foreseeable future.  “You came to visit!” Emma said, cutting through my thoughts.

“Well it’s not really a visit, when I’m here all the time,” I said in an effort to clarify and unburden myself of just a little guilt.

“It’s Mommy!”  Emma repeated, as though she were surprised.

It reminded me of a time not long ago, when Emma on one of her perseverative loops of anguish, kept running through the house crying out something none of us could decipher.

“What is she saying?” we asked each other more than a few times.

Emma’s upset became more extreme and ended with her biting herself.

Someone (it may have been me) then asked, “Why is she doing this?”

I remember thinking, “Umm, because she’s autistic?  Do we really need to look much further?”  But I didn’t say it out loud, okay so maybe I muttered it under my breath.  The point is, applying my own reasoning to Emma’s behavior usually doesn’t get me very far.  And often it is counter-productive.

“You came to visit!”  Emma repeated again.

“No Em.  I live here.  You visit someone when you go to their house, a different house to see them for a little while or when they come here, to our house, but then leave, then they visit you.”  Okay, so it wasn’t the best explanation I’ve ever come up with, but it was the best I could do in the moment.

Emma stared at me for a moment and then said matter-of-factly, “Have breakfast now.”

“Right,” I said.  Too much information.  Got it.

When Emma and I were in her bathroom, getting ready to brush her teeth, she stood on her little stool and while looking at herself in the mirror, put her arm around my neck, pressing her cheek against mine.  “It’s Mommy!” she said, pointing to my reflection.  Then she gave me a kiss on the cheek.

It was one of the moments you wish you had a remote control to hit the pause button on.  I thought of how it was such a typical little kid thing to do, how wonderful it was to see her do something like that.

“Let’s go visit Nic,” I said after she’d finished brushing her teeth – meaning we should go find him, see what he was doing.  And I caught myself.  I understood how and why she said, earlier – I was “visiting.”   Emma was hearing the word used and applying it as best she could in a similar situation.

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