Tag Archives: autistic children

Birthday Parties

Posted on April 1, 2011 by | 2 comments

Birthday parties, anticipated with great excitement by neuro-typical children, are something parents of autistic children often dread.  Many autistic kids have sensory issues, which cause them to crash when they are over or under stimulated.  Emma has both and it’s impossible to predict what might trigger her.  Crashing for Emma can mean perseverating on some seemingly insignificant thing – a missing photograph, a stick she picked up and by mistake dropped, a portion of packing tape, a magazine no one knew she cared about that was inadvertently thrown away.  These are the things she uses to calm herself and there’s nothing like a party to trigger the desire for items used for self-soothing suddenly and without warning.  In the past we have witnessed all of the above as well as her wanting something we cannot understand and therefore cannot help her find, which leads to crying or worse, a full melt down.  When in the later mode, we must physically remove her from wherever we are and get her home as expeditiously as possible, something onlookers find baffling and frightening.

A few years ago Emma was invited to a little girl’s birthday “Tea Party”, which took place in the Rose Club of the Plaza Hotel.  Red velvet banquets and gold gilded chairs with couples speaking in hushed tones made me inwardly groan, when we arrived.  How was I going to keep Emma occupied?  What if she was disruptive, unable to sit still?  When the menu was delivered I barely went through the motions of opening it – what was the point?  I knew she wouldn’t eat anything from the menu.  I had the foresight to bring food I knew she’d eat and just hoped the service was quick, given there were eight little girls with a variety of disabilities attending.  My memory of that party is of running after Emma and trying my best to keep her from jumping on the beautifully upholstered furniture or sliding down the marble banister, Mary Poppins style, while avoiding the glares of the hotel staff.

The only other party to rival that one was when Emma turned four.  Given Emma’s love of music, we hired a musician to come to our apartment. We invited a number of children from her special education preschool as well as some neuro-typical children Emma and her older brother, Nic had known since they were babies.   Emma spent most of the party attempting to lie down inside of the musician’s guitar case as the other children danced, ran around or sat politely listening to the music and singing along when appropriate.  My husband, Richard and I took turns excusing ourselves and each went separately into our bathroom where we allowed ourselves a few minutes to cry, before mustering up the strength to return to our guests, doing our best to act as though everything was fine.

That was also the year we had been called into a parent/teacher conference at her special education preschool only to be told our daughter’s development was a “red flag” and that she had “flat-lined”.  It was a tough year.  A year Richard and I still refer to when we feel doubtful of Emma’s current progress.  That year marked a time of desperation, sadness and a general feeling of impotence on our part.   It seemed whatever therapy we tried, whatever medical interventions we took on, nothing made a difference.

Emma’s most successful birthday parties have been when we’ve rented a gym, as we did a few months ago for her 9th birthday (we’re learning) or when we’ve planned the party in some other equally active place.  This past birthday, we rented a gym for her birthday party and the following day took her and Nic to Bounce U in Brooklyn where she ran into a friend from her special education school and everyone had a blast.

Emma at Bounce U

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

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Posted in Autism, Parenting, sensory issues

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A Marathon

Posted on March 30, 2011 by | Leave a comment

“This is a marathon, not a sprint,” Richard and I remind each other on a regular basis.  I have written before about how when Emma was first diagnosed we were given a great many reassurances that while Emma certainly needed early intervention, many who worked with her felt sure she would be mainstreamed by the time she was in Kindergarten.  When the day for her to enter Kindergarten came and went we began to slowly go through the process of realizing 1) no one knew what lay ahead 2) no one was any better at predicting how Emma would develop cognitively or neurologically and 3) we needed to pace ourselves because Emma’s future was an enormous question mark.

During those years I rarely thought about Emma being a teenager, going through adolescence or what it might mean to have a young autistic adult living with us.  I was too focused on all her therapies, learning as much as I could, trying to find specialists who might help her, to spend much time contemplating the distant future.  As time went on and after countless parent/teacher conferences where the reports were less than stellar, despite all they were doing at school and all we were doing at home, it occurred to us that we were in this for the long haul with no guarantees of any definitive outcome.

As with a marathon, we have learned we must pace ourselves.  And as with running, the more I am able to remain present and in the moment, the better off I feel and am.  Emma spends ninety percent of her time in the moment.  She has achieved what eludes most of us.

Emma this morning

For more on Emma and autism go to: www.EmmasHopeBook.com

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Hide And Seek

Posted on March 29, 2011 by | Leave a comment

Games are difficult for Emma to understand.  When she was much younger, unless it was a physical game such as chase, and only if she was the one being chased, games held little interest.  The old standards, Candy Land, Shoots and Ladders, Old Maid, Go Fish all sit unused in some drawer at our house as Nic moved on to Monopoly, checkers and eventually chess, which he continues to play.

A few years ago Emma engaged in a game at a day camp with some other girls where they stood in the shallow end of a pool and threw a ball to one another while singing – The Wonder Ball Song.  Emma was able to catch the ball and even threw it to the next girl, but this was unusual and so we documented it with photographs.

The Wonder Ball Game

A few years ago I tried to explain Hide and Seek to her.  She seemed to understand that it involved counting and running, but the whole hiding part eluded her.  We showed her some “sample” hiding places, but when it was her turn to hide, she was usually found standing in the middle of a room shouting, “There you are!” when one of us appeared in the doorway.

“No, no Em.  You have to find a new hiding place and then you have to be quiet so we can’t find you,” we tried to explain.

We even persuaded Nic, who was a master at hiding in impossible-to-find locations, to take her with him to hide.  But we always knew, no matter how brilliant his hiding place was, where they were because Emma couldn’t stay quiet.

“You have to be quiet,” Emma would say loudly.

Interestingly as I was writing this, Emma came into the room and said to me, “Play hide?  You have to count.  Come find me,” and then she ran out of the room to hide making me wonder whether she really is reading at a much higher level than we think or if it’s just a coincidence.

Not willing to pass up an opportunity to engage, I counted to twenty and then yelled, “Ready or not here I come!”

Emma is predictable in her hiding choices.  She almost always wriggles under the bed sheets of her bed.  So I called out as I looked in other places, “I wonder where Emma is?” while looking in the bathroom and Nic’s room before finally going into Emma’s room where a huge wiggling lump could be seen under the sheets.  “Hmmm.  I don’t see Emma anywhere!” I said.

“Waaaaa!” Emma screamed before I could shout it first.

“There you are!” I said tickling her.

When she scooted out from under the sheets I said, “Okay, it’s my turn to hide.  You have to find me.  You have to count to twenty.  Okay?”

“Okay,” Emma said.

I heard her begin counting, but at around six her voice trailed off.  After a few minutes I called out, “Em, you have to find me!”

She ran past the room I was hiding in, so I called out, “Hey Em!  Where are you going?  Come find me over here!”

After further searching she found me.  “Waaaaa!” she yelled gleefully.

“Ahhhhh!” I yelled back.  “Okay your turn to hide.  One, two, three…” I counted.

When I opened my eyes, Emma was sitting directly in front of me on the floor.  “Em, I thought you were going to hide,” I said.

“Hiding all done,” she told me, so I tickled her instead.

I know this doesn’t sound like much, but it shows a desire to engage, a desire to initiate and a desire to play with others.   All of which, are huge steps for Emma.

For more on Emma and autism go to:  www.EmmasHopeBook.com

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The Tricky Diagnosis Of Autism

Posted on March 25, 2011 by | 2 comments

When Emma was first given a diagnosis, we were told she might not be autistic, time would only tell, but that for the time being they were giving her a diagnosis of PDD-NOS, which is the acronym for Pervasive Developmental Disorder Not Otherwise Specified.  PDD is often thought of as a milder form of autism or as was explained to us, the diagnosis given when the child has enough “autistic-like” behaviors to require intervention, but doesn’t display all of them.  As time went on however, Emma’s “milder” version of autism grew into the more solidly defined autism.

I remember speaking with her neurologists saying we were lucky in that Emma was mildly autistic and one of them said, “Well no, she isn’t mild.”

“Really?  Where do you think she falls on the spectrum?” I asked, genuinely surprised.

“She’s moderate,” one of them said, kindly.

I was so stunned, I couldn’t speak.  We had been assured by so many “professionals” in the field that her autism was mild, it never occurred to me they might be wrong in their assessment.  Even when we kept trying the various behavioral therapies recommended with little progress, I continued to cling to the “mildly autistic” assessment.  I kept thinking it must be something we were doing wrong.  We weren’t giving her enough applied behavioral analysis, despite the 40 hours a week we had implemented.  I thought of it as a kind of  toddler boot camp, unfortunate, yet necessary.  When we then trained with the brilliant Stanley Greenspan, I assumed we were not doing his floortime “right”.  In essence I blamed our ability to adequately implement the various therapies as the reason she wasn’t progressing more quickly.

When we began having regular QEEGs done, which showed us images of her brain compared to her neurologically typical peers I was given the visual explanation I needed to understand what we were up against.  There was no denying the vast difference between her lit up non-symmetrical brain and the brains of same age children not on the spectrum.  It was only then that I began to fully take in just how much we do not know about autism.  Years later, I now question anyone who claims definitively to know what will or will not help, what course they are sure we should take.  It is the professionals who have the humility to admit all they do not know, whom I find myself interested in speaking with.

When Emma was about four we took her up to Boston to visit a well known and extremely well thought of gastro-intestinal doctor, Dr. Timothy Buie.  I asked a series of questions and he never once answered with the sort of assurance I had become used to.  Most of my questions he said he couldn’t answer because he didn’t know for certain.  We left Boston with the tests showing Emma’s numerous ulcerations and inflammation to her GI tract.  But with no solid answers as to why or how this had happened to such a young child.  I continue to have tremendous respect for that doctor who continues to devote his life to finding answers, but has the humility to acknowledge how much we still do not know and understand when it comes to autism.

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A Light Bulb Moment

Posted on March 23, 2011 by | 1 comment

This morning Emma, Joe and I went into “Emma’s Study Room”, which is where we go to work on Emma’s literacy program.  Emma asks to do this each morning.  Earlier this morning Joe and I discussed various strategies to help Emma with the handwriting portion.  Up until this morning’s session, the handwriting part has been extremely difficult for Emma.  Her anxiety level (and mine) have been counter productive – with Emma fidgeting, pushing her chair away from the desk and saying things like – “study room all done now.”

We began with the video – a short story about a man washing his car with a rag.  Emma seemed mildly uninterested, but watched the short clip and then was asked to find the word from a series of sentences, which she did with little problem.  She then was instructed to spell the word, again with few problems and when the computer portion was over we went to the handwriting part.  But today we implemented some other techniques that we had used in the first part of the literacy program, exercises she was familiar with and as a result had no problem doing.  We then moved on to the more problematic spelling of the single three letter word, but this time Emma had no problem!  As I watched her work, I could see that something had clicked.  It was an amazing moment.  It reminded me of the moment when Helen Keller finally realizes the water dribbling through her hand is the word Annie Sullivan is spelling for her.

I felt such unbelievable joy witnessing Emma “getting it”.  The look on her face, the smile… it was priceless.  To say that I am proud of her is a vast understatement.  I am ecstatic for her as well as proud, so very, very proud of her.

We continued through the other exercises with amazing results.  At a certain point I looked over at Joe and made a Can-You-Believe-This?! face.  And after we were finished I went to tell Richard, overwhelmed with happiness and relief.  What I witnessed was the beginning of reading and writing comprehension and it beats the joy I felt when Emma took her first steps.

As a side note, I will be adding the link to this blog on each post as various posts are getting picked up elsewhere.  For those who read Emma’s Hope Book already, just ignore and for those of you new to it, welcome!

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Posted in Autism, Parenting, reading & writing

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Learning

Posted on March 22, 2011 by | 2 comments

Since the family is now here, I’ve been getting up with Emma, so everyone else can sleep.  Emma typically wakes by 6:30AM and often a bit earlier.  Usually we go downstairs and sit together on the couch.

“Go to other pool?” Emma said this morning.

“Okay, but Joe just drove in from Denver last night, so maybe tomorrow.”

“Go to Glenwood pool tomorrow,” Emma said, nodding her head.

“Yeah.  Maybe tomorrow.  Joe’s probably pretty tired today.”

“Joe’s coming,” Emma replied.

“No.  He’s here!” I said pointing upstairs.  “He got in late last night.   He’s sleeping,” I explained.

“Joe’s sleeping.  Joe!  Can we go to the other pool?  I want to go to the Glenwood pool!”

“Okay, Em.  We’ll ask Joe when he wakes up.  How about doing our work in the study room?” I asked.

“Do study room in Mommy’s bed,” Emma said.  Before I could answer she added, “No, not going to do study room in Mommy’s bed.  We have to go to Mommy’s office just with Joe!”

“Exactly, Em.  We have to show Joe what we’re doing.” I told her.  “We have to wait until Joe wakes up.”

“We have to wait,” Emma said.

After Emma made her toast and ate it, she said, “Go see Joe.”

“We have to wait, Em.  He’s tired.  We need to let him sleep.  Okay?”

“We have to wait,” Emma said sadly.

Eventually Joe appeared and Emma jumped up and down, “It’s Joe!  Joe’s here!  Go to study room with Joe?”

Emma and I are doing the next level of her literacy program.  It’s a big step from what we’d been doing and it’s difficult for Emma.  We watch a video and then do some computer work spelling one word.  It is the same word repeated over and over in the story.  Emma then must find the right letters on the keyboard to spell the word as well as find the word within the story.  Emma does pretty well with all of that, but when we go to handwriting, it’s as though Emma has forgotten all her letters that we’ve been working on over the past few months.

The first day I found myself becoming frightened and by yesterday I felt abject terror.  Terror at the idea she won’t be able to do this next level, frightened that it’s more than her mind can retain.  I imagine she senses my fear in addition to her own anxiety and the whole thing snowballs, making it even more difficult for her.  I am relieved Joe is here, so that he can work with her a few times.  Perhaps his calm demeanor will have a positive effect on her, allowing her to relax enough that she can just concentrate on the work.

“Your fear is palpable,” Richard observed last night.

“I know it is,” I answered.  “I am terrified she won’t be able to learn this.  And then I go off to the next thought and the next, it’s horrible.”

And it is.  But it’s my fear and has little to do with anything that is actually happening.  I must learn to manage this fear as it’s getting in the way of Emma’s learning.  I must compartmentalize it.  My worries are not helping Emma.  I say this in my head while I am working with her – these are my fears, they are not real, they are just thoughts.  They do not mean anything, they are just fears.  They are not real, they are not real.

Repeat as necessary.

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Posted in Autism, literacy, Parenting

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Blocked Ears & the Internet

Posted on March 17, 2011 by | 3 comments

Emma has a blocked Eustachian tube in her ear.  And if I might remind our loyal readers, I did actually mention this in a previous post after searching for several hours on the Internet – having googled such random things as:  ears, ears popping, earache, etc.   I concluded in that post I must avoid the Internet when attempting to diagnose my daughter’s complaints – though now, it turns out, googling random words is exactly what is called for in such circumstances.

The remedy is a bit more difficult to enforce.  The remedy being she is causing the pain in her ears by grabbing hold of her nose, clamping her mouth shut and blowing forcefully out of her now firmly held nose.  Other than turning her face red, I wasn’t aware that other dangers lurked from this seemingly innocent act.  Trying to convey all of this to Emma is proving to be a bit more difficult than simply saying – Hey Em.  Don’t do that.  It’s making things much worse and besides that, you probably wouldn’t have any ear problems in the first place if you just stopped.

She looks at you saying all of this, nods her head and then promptly grabs her nose as though you’ve just given her the go-ahead.  Nothing helpful comes up when I google any words remotely associated with any of this other than a few non-related ads about a new Disney Resort called Aulani in Hawaii.  I am tempted to explore how this ad came up when googling autism and ear sensitivities, but really why waste the time?

I’m going out on a limb here, but as I have said before and been proven wrong more times than not, anyone reading this will take it all with a grain of salt –  Emma is highly sensitive to the air pressure and it turns out, so am I.  Only I wasn’t aware of this until Emma started complaining of her own ears.  Throughout the day now I am aware of a slight pressure within my ears and I immediately wonder if Emma is feeling the same thing.  The difference being I can at least attempt to articulate the sensation and realize it is not life threatening, it will eventually go away and is one of those things in life, like sore muscles that one just puts up with knowing it will be okay, no need to panic.

However this is not the way Emma perceives it.  She is thrown into a state of panic and it is heart wrenching to witness.

I will spend some more time on the Internet, before going into work, having had my faith in Google restored.

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Aspen, Work & Richard

Posted on March 15, 2011 by | Leave a comment

I am in Aspen working, having left Richard and the children back in New York.  Emma’s ears continue to hurt her.   Richard had to take her to an ear specialist yesterday afternoon.  The last few times I’ve called I could hear Emma in the background crying plaintively, “I need help!  Ears popping!”.

I don’t know what it’s like to be a father leaving his wife and children behind for work, but I can tell you as a Mom, it feels pretty awful.  I feel terrible that Richard is left coping with the myriad details required, the organizing of both children, dealing with one who doesn’t feel great, getting referrals to doctors, arranging appointments, ensuring Nic is taken care of, juggling IEP meetings, seeing Emma’s neurologist, rearranging his own work schedule to accommodate all of the above.

And meanwhile here I am in Aspen.  Even when you tell someone you’re there to WORK, you can see the little smile on their face, “Uh-huh,” they usually respond.  “It’s gotta be tough.”

So no, one cannot expect much sympathy, and if I go on about how tired I am, I can expect little other than a slight nod of the head followed by the slightly sarcastic, “Yeah, I bet.”  Sometimes they’ll even add a barely audible, “Ski much?”

Despite the fact I have no intention of skiing, am working everyday most people find any utterance even remotely sounding like a complaint, tiresome.  Which makes Richard’s response all the more remarkable.

“Of course you must go,” was his reply when I told him about some of my commitments here.  There was no need for discussion.  It was a given, I would go, Richard and the children will join me in another five days.  I am grateful to him for that.

When I call then and hear Emma’s little voice whimpering and Richard’s exhausted voice telling me, “Everything’s fine,” I know he’s putting on a brave front.  I know how exhausting it is to hold down the fort in the other’s absence.   I know he’s worried about Emma, as am I.  The difference is he’s the one who is making and keeping the appointments with all the various doctors, not me.  And no matter how hard I am working, no matter how many hours I put in, it doesn’t compare to what Richard is doing back in New York.  As I write this I can look out my window and gaze upon the Rocky Mountains jutting up, the blue sky contrasted against their snowy peaks.  My concerns for Emma are muted by physical miles, I cannot hear her distress except when I call.  I am not in the trenches with Richard.

I am lucky, very, very lucky.

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Posted in Aspen, Autism, Marriage

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My Greatest Fear

Posted on March 14, 2011 by | 1 comment

My single greatest fear is when Richard and I die Emma will be institutionalized.  It is a nightmare I try hard not to dwell on.  So when I read articles like this one from the New York Times, http://www.nytimes.com/2011/03/13/nyregion/13homes.html

regarding the rampant abuse in homes for disabled people I am more than horrified.  I am terrified and left feeling nauseous.  It is like waking from a nightmare only to realize the nightmare is real.

The final line in the article is a quote from a memo that was sent out to all staff at a group home:  “DON’T report in your notes that an Incident Report was filled out,” the instructions said, adding: “IF IT ISN’T DOCUMENTED, IT WASN’T DONE.”

That final quote says it all.  The utter disregard for humanity, the unwillingness to see the disabled, whether mentally or physically, as nothing more than easy prey has become so commonplace as to be suitable for a memo.

Over the years we have heard Emma repeat things said to her, things she even now repeats, years later.  Often they are things said to her in anger, and because she mimics the person, is so good at capturing their tone, their accent if they have one and their inflections, we often have been able to determine who has said these things to her.  Usually they are benign comments such as – “don’t put playdoh in your mouth” or “line up!” or “Emma!  Sit down!”  Nothing abusive, all within what one might expect from teachers, caregivers, therapists etc.

But once, Emma came home and started yelling – “Sit down!  You sit down right now!”  “No you cannot leave!”

From those words I was given enough information to ask her a number of questions and realized her bus driver was yelling at her.

The next morning we spoke with her driver who it turns out was getting to her school before the school was open and so, instead of telling us and changing her pick up time, decided to let the bus sit idling outside the school for half and hour with Emma in it.  When she stood up to leave, seeing that they were at her school and with little sense of time, the driver started yelling at her.  Fortunately she had enough language for us to figure out what was going on.  We immediately complained to the Office of Public Transportation, wrote a letter to our lawyer and put a stop to it.  The next morning she had a new driver and a new pick up time.

We have been lucky so far.

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Posted in Autism, language, Parenting

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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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