Tag Archives: special needs children

The Shower

Emma washed her hair this morning.  By herself.  With almost no input from me.  Emma is ten years old.  Emma has autism.   I used to think those few sentences would suffice.  Keep it short and sweet, age, diagnosis, what more needs to be said?  But I was wrong.  Most people who do not live with a child with autism have little or no idea how monumental something like washing her hair unaided is.  Okay, so I stood outside the shower and had to do a little coaching – “Lather the shampoo on the top of your head too, Em.  Good, now behind your ears, don’t miss the hair on the sides, just above your ears.  No, not like that, Em.  Like this.”  Then I demonstrated by pretending to shampoo my own hair, as she watched me and did her best to mimic my movements.

For the past four years, since Emma began preferring showers over baths, Richard or I have aided her in washing herself and her hair.  Richard’s swimsuit hangs in our bathroom, damp evidence of his continued support.  The few times I tried to let Emma wash her hair on her own, I regretted it. Once her hair dried, revealing large patches of unwashed and now even greasier hair, it was all too apparent that help was still required.  As with everything, it is not that Emma cannot eventually wash her own hair, it’s that it takes a great deal longer for her to learn.  Years, actually.  Many, many years.  “Maybe we should move to France,” I suggested one day after a particularly lengthy and difficult session trying to get Emma to rinse the shampoo out of her hair.  Richard looked at me quizzically.

“They don’t take bathing as seriously as we Americans do.”  (To all French people whom I have now possibly offended, forgive me for my blatant stereotyping.)


A bit later Nic announced that he too, would like to move to Paris.  When I inquired as to why he thought this was a good idea, he mentioned the museums, the great food, I’m pretty sure he even said something about their coffee being superior, a beverage he isn’t allowed to have.  But I knew his desire had more to do with the fact he doesn’t love showering either.

When Emma got out of the shower, she pulled a towel around her body.  Carefully she began to dry her feet, legs, stomach, arms, just as she has been coached to do for all these years.  “Em, you’re doing such a great job,” I said.

“Drying by myself,”  she said, sternly.  Then she corrected herself, “I’m doing it by myself.”

I nodded and smiled at her.

“Mommy, go away,” she said.

So I did.

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

Amanda Boxtel

Last night Richard and I went to a launch party here in New York City of Ekso Bionics with a live demonstration by Amanda Boxtel.  Amanda was in a skiing accident over 20 years ago, which left her a paraplegic.  For more than two decades Amanda has lived her life from a wheel chair.

This photo is out of focus and does not do Amanda justice.

Amanda demonstrates the power of Ekso Bionics

This quote is from Amanda’s website.

“Imagine wanting something so badly for years and years—fluctuating between acceptance of what is and hope for something better.  Imagine if that one thing you longed for is to stand tall with your legs supporting your full body weight, and then taking your first step.”

When we took Emma to Costa Rica for her first stem cell treatment, fluid seeped from her spine into her blood stream.  Suddenly she was in excruciating pain and Richard and I were terrified.  Amanda wrote me and her letter, one of many I have kept, was a calm voice of strength and reassurance.  Amanda has been to India six times for stem cell treatments.  She is an inspiration and source of hope for all.

Watching Amanda stand and then walk last night was a visual confirmation of what is possible in this world, if we never give up.  I think of Amanda often as I work with my daughter, Emma. Writing is difficult for Emma, it does not come easily.  But then walking does not come easily to Amanda either and yet she has never allowed that to slow her down.

Emma’s writing from this morning

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

Having a Daughter with Autism

Someone asked me the other day – What’s it like having a daughter with autism?

The flippant response would be – I don’t know what it’s like to have a daughter without autism.  But the more thoughtful answer is a bit longer and more complicated.  My own experience of being a daughter to a mother with whom I feel deeply connected to, a connection that many, I have learned over the years, do not have certainly plays a role in my answer.  I have always felt my mother and I share something that goes beyond the usual feelings of responsibility and gratitude toward someone who gave so much in order that I might have a good life.  It is as though we share something much more than the history and past of living under the same roof for the first 17 years of my life, something I cannot adequately put into words.  We have a closeness, a bond and yes, a friendship that only a few of my female friends can relate to regarding their own mothers.  I have often said that if my mother were not my mother, I would wish she were.  I don’t actually know many people who can truthfully say that about their mothers.  I am lucky.  I get that.

So when I was pregnant with Emma, I fully expected to have a similar experience.  I knew right away she was a girl.  Don’t ask me how, I just knew it.  For one thing I began to wear pink, a color I never liked until Emma entered my being and for another I craved spinach and blue cheese during my first trimester, as opposed to steak and all things meat when pregnant with Nic.  Okay so I’m not being completely serious – though all of this is true – the pregnancy was different with Em, it just was.  Without meaning to or even consciously trying to, I visualized my soon to be daughter.  I knew she would have blonde hair, blue eyes and broad shoulders, as both Richard and I share these things, but beyond that I couldn’t know. I sang to her, just as I did when I was pregnant with Nic, I talked to her, read to her and dreamed about her.

While pregnant with Emma, I was walking on Fifth Avenue one afternoon, when I passed The American Girl store.  It reminded me of my first and favorite doll, Maribelle, a gift from my mother to me when I was little.  Maribelle came in a blue and grey striped trunk complete with shoes, gowns, dresses, she even had a fur coat!  (I still have Maribelle – she and her trunk reside upstairs in my mother’s house.) I saved her, intending to give her to my own daughter, were I fortunate enough to have one. Looking through the large windows of the store I fantasized of the day I would bring my daughter there and how she would choose a special doll.  A doll that would be like Maribelle was to me – a companion, a doll she would whisper secrets to and spend hours upon hours playing with.

Richard and I were not the kind of parents intent on placing our yet-to-be-born children on waiting lists of the most coveted New York City preschools, looking to the day we could sit listening to our child’s speech having graduated  from Harvard Summa Cum Laude.  Ours was a more unconventional approach – at one point we fantasized about putting all of our belongings in storage and traveling the world for a few years.  We spent many an evening discussing the places we wanted to travel to, which included Tanzania, Lebanon, Egypt, Brazil, Morocco and Laos.  We poured over guide books and vowed that once both children were out of diapers we would make our fantasies reality.  We had no way of knowing that Emma wouldn’t be out of diapers until she was eight and a half years old.  We couldn’t know that once she was out of diapers we would be scrambling to cover the staggering cost of her care, making any dreams of extensive travel abroad impossible to seriously contemplate, not to mention the sheer logistics of traveling to a foreign country with a child with special needs.

(To be continued.)

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

Tolerance, Despair and Hope – Autism

A follower of this blog emailed me this morning about a new app for the ipad called, Pop It.  It’s a “book” that when one shakes the ipad, the perspective of the story changes.  The creator, an artist named Raghava, gave a talk on Ted.com, which is terrific – about perspective and tolerance of others and the role of art and creativity.  Listening to Raghava made me think of a book I am currently reading by the extremely talented and insightful theologian, James H. Cone.  His book – The Cross and the Lynching Tree is a deeply touching and powerful investigation of suffering and hope.  James Cone writes at length about the nature of faith, how God “could make a way out of no way”, how “hope could remain alive in the world of Jim Crow segregation.”

I do not claim to know of the existence, nor can I claim to know of the non-existence of a god.  I cannot even define that word.  It is not a word that holds any meaning for me.  But I do know what it is to struggle with hope.  Hope for Emma, hope for all our children who will grow up to become adults, who many will fear, ignore or just wish would go away.  Our children with autism are often misunderstood, in their inability to fall into line with societal norms they are in turn rejected by society.  The continued negligence and worse, abuse, of people with disabilities is rampant.  Their abuse is done by people who have deemed them incompetent, imbeciles and without value.  This is the common thread that exists in the abuse of all groups of people throughout history.  It is our intolerance of those we believe to be “less than” that makes us believe we have the “right” to punish, shun, ignore, hurt, torture and kill.

James Cone writes:  “The cross is a paradoxical religious symbol because it inverts the world’s value system with the news that hope comes by way of defeat, that suffering and death do not have the last word, that the last shall be first and the first last.”

When I was in my late teens I began using food as a way to quell anxiety and emotions I felt incapable of dealing with.  My overeating turned to full blown bulimia and the bulimia became a way of life – for 22 years.  I remember when I finally stopped, the idea of “surrender” seemed antithetical to all I had, up to that point, believed.  I thought that if I just had more will power I would be able to stop the destructive behavior.  I believed that the bulimia was something I could control.  I believed that my lack of control simply proved how despicable I was, which only served to fuel more of the same behavior.  It wasn’t until I took a leap of faith – really took in that I was, in fact, out of control, that I received a respite from the behavior.  Early in my “recovery” from bulimia someone said to me, “don’t you think that if you could have controlled the bulimia, you would have by now?  Isn’t it true that in fact you have tried to control it all these years and this is where that control has gotten you?”  With a great deal of support from others who had eating disorders and had come out the other side, was I finally able to find a way out from under it.  In surrendering to the fact that I was unable to control it, was I finally able to find freedom from it.

I’m all over the map with this post, but perhaps some of these thoughts will prove helpful to someone else or if not at least encourage thought and conversation.

For more on Emma and our journey through her childhood of autism, go to:   www.EmmasHopeBook.com

More on Emma’s Ears…

The good news is Emma’s ears look fine.  The bad news is her throat is a little red and evidently strep continues to make its way through the New York City schools.  So we had yet another strep test done.  The immediate results were negative, but we’ll know more today or tomorrow once the culture has had a chance to grow.  So Emma is staying home today on the off chance she does have strep and so she won’t needlessly contaminate her fellow students.

As I write this, Emma is leaping around the living room singing, while waving a thin strip of plastic around like some sort of experimental ribbon dance.   Every now and again she stops and stands very still while twirling the plastic around and around, seemingly mesmerized by it only to continue jumping, singing and dancing a few minutes later.

It’s impossible to know what Emma is thinking or feeling.  I watch her and make assumptions, much as I did yesterday regarding her ears, only to find that perhaps she has strep.  I think I’ve said this before, but autism throws all maternal instincts right out the window.  Whenever I think I have an idea of what’s going on with Emma I am almost consistently proven wrong.  She complains of her ears, look at her throat.  She complains of her ears, I suspect her throat (pride myself in being a quick learner) and it turns out it’s her ears.  It’s as though there’s some sort of “Emma’s Law” out there, whatever I think is going on – I’ll be wrong.   You think you’ve figured this out?  Ha!

Yesterday I did what many parents do when confounded by their child’s ill health.  I went to the internet and googled – ear pressure, ear popping and a number of other things.  All of which was fine until I read about a troubling condition some children are afflicted with called – Blocked Eustachian Tube – a decongestant was recommended followed by a visit to the doctor and Barotrauma, the only suggestion being a doctor’s visit.  Emma’s pediatrician didn’t mention either of these things.  But now I’m convinced Emma has some horrific condition which will only be remedied with invasive procedures, possibly surgery and I’m traveling for work tomorrow, so it’ll be up to Richard to cope with all of this in my absence.  No one has said any of this to me, these are the conclusions I have come to after going onto the Internet for an hour.

All of which is to say – I must avoid the internet when it comes to diagnosing my child’s ear problems.

Skill Set

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.

The World of Autism

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.


“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.


At 2:30AM this morning, Emma appeared at the side of our bed.  “Carousel photos?” she asked, her voice tense with agitation.

“Em,” I began in a quiet voice.

“It’s okay,” she interrupted me.  “Take a deep breath, it’s going to be okay.”

“Yes, Em.  That’s right and right now it’s time to go back to sleep.”

“Photos!” she said with urgency.  It was clear, she felt I was not taking her seriously enough.

“Yes, I know Em.  We will find them tomorrow, I promise, but right now you have to go back to bed,” I said getting up.

“It’s okay,” Emma repeated as she took my hand and allowed me to lead her back to her bedroom where both the lights were on as well as a lit flashlight, lay on her bed, amidst piles of books and photographs.

It looked as though she’d been up for quite some time, before making her way into our bedroom as a last ditch effort to find the missing photograph.

She carefully took her blanket from it’s designated pouch and pushed all the books and pictures from her bed to the ground.  “Time to go to sleep,” she said.

“That’s right Emmy.  It’s going to be okay.”

“No school bus,” she said.

“Yes, you have school in the morning, but it’s time to go to sleep now and we’ll find your photo in the morning,” I said, turning out the light.  I sat with her for a second, listening to her breath.  “I love you Em,” I said and then I left.

As I made my way back to our bedroom, I marveled at the fact Emma was not screaming, not even a whimper could be heard from her room.  She had returned to her own bed, having obsessed about a missing photograph, which months ago would have been enough to set her off for a good two or more hours.  Perhaps even more incredible was the fact she went back to sleep, not to rise again until after the rest of us had awakened.

These are the seemingly small events, which added together create a larger picture of progress.

This morning when I got up I noticed a pile of her photographs on the seat of the armchair in our bedroom.  I picked them up and put them near Emma’s bedroom door.  About ten minutes later Emma appeared, carrying the pile of photographs.  “You found them!” She exclaimed.  Though I knew she meant that she’d found them and her relief was all too apparent.


It was 1:48AM when Emma appeared at the side of the bed this morning.  Ever cheerful she said, “You have to ask Mommy.  Mommy?  Can I come get you in the other room?”

“But Emmy, it’s the middle of the night.”

“Good job asking Mommy!” Emma said brightly.  Then in a more subdued tone she said, “You have to wait til it’s light out.  Is it light out?  Yes!”

“Em, it’s not light out.  Look.  It’s dark.  It’s pitch black,” I said grumpily.  “You have to go back to your room and go to sleep.”

I felt Emma’s face near mine, her breath on my cheek as she bent down and kissed me.  “Kiss Mama,” she whispered.

“Ah, Emmy.  Thank you.  Come on.  Go pee and then you have to go back to your bed,” I said holding her body close to mine.

“You have to go pee,” Emma said as she ran off to the toilet.  As we made our way back to her bedroom she said, “You didn’t wake Nic.  You have to ask Mommy!”

“That’s right Em.  You didn’t wake Nic.  Thank you.  He needs to sleep.”  I held her hand as we walked toward her bedroom.

She hopped into bed, “Mommy!  Can I get you in the other room?”

“No, Em.  You have to go back to sleep in your own bed.  Remember?  You have to try to sleep now.”

Wide-awake and fully alert Emma sat up in bed.  “Mommy?  Mommy?”

“Yes Em?”

Emma leaned over and gave me another kiss.   “Emma kiss Mommy,” she said, proudly.

“Emmy, that is so nice.  I love when you give me kisses,” I stroked her head.  “Now come on, let’s lie down.”

“Mommy stay with Emma?” she asked wriggling down under the duvet.

“Yes, I’ll stay with you for a little while, but you have to go back to sleep.”

“The flushing carousel is closed,” Emma said sadly.  “The horses are sleeping.  Shhhh, you cannot go there.  You have to wait.”

“Are the horses sleeping, Em?”

“Yes.  The horses are sleeping now.  It’s broken,” she said.  Then she leaned over and kissed me again.  “Kiss Mommy.”

An hour and a half later and after many more kisses, Emma finally fell back to sleep, one leg draped over mine, an arm wrapped around my body, her face so close to mine I could feel every exhalation on my face.  As I lay there with her, I remembered how as a baby Emma was so uncomfortable with human touch.  It was as though it was physically painful for her to have skin-to-skin contact.  Now, Emma seeks out what once repelled her.

I read once years ago of a doctor who theorized all children, no matter their cognitive issues had to develop through a specific set of behaviors or would suffer the consequences later on.  For example if the child didn’t crawl, it would show in their development in other unexpected ways, learning disabilities, fine motor issues, etc.  He hypothesized the reverse was therefore true as well.  If a child no matter how delayed, was encouraged to go through a missed stage or came to it on their own, the child would show signs of positive cognitive development elsewhere.

Hope.  One must always hope.

Trick or Treat?

Halloween, wildly anticipated by our son Nic, was an occasion for dress up followed by cake for Emma.  “Have Halloween party and cupcake?” Emma asked yesterday afternoon.

“We aren’t having a party, but we will go out trick or treating and we can get you a cupcake while we’re out,” I said, knowing Emma wouldn’t care about the candy she acquired while trick or treating.

“Get cupcake?  Have cupcake now?” Emma said.

“In a little while, Emma.”

“Go trick or treating,” Emma said with a bit less enthusiasm.

For Emma it was all about the cupcake.  The cupcake, which would give her the opportunity to sing – Happy Birthday, regardless of the fact no one was celebrating a birthday.  Cupcakes = Birthdays = singing = joy, pure and simple.

Emma insisted on wearing her one-and-a-half-inch heeled, pointy-toed witch’s shoes, her black witch’s hat and completed the entire outfit by carrying a black broom.  “Mommy carry candy bag?”  Emma asked when we got outside.

“No Em.  This is for you.  You have to hold the bag and when we get to the first house you open the bag and say – Trick or Treat!” I coached.  We went through the same routine last year and the year before that.

“Trick or treat!” Emma repeated happily while Nic rolled his eyes.

“Mom, she doesn’t even care about the candy,” Nic said in a tone of resigned disbelief.

“I know Nic,” I said.

As we made our way out to join the quickly gathering crowds in Chelsea, Emma ran ahead.  Her head down, witch’s hat with its purple band jutting upward, her little heels clicking as she went.  “Em!  Em!  Wait!” One of us would periodically yell.

It was cold last night.  But Emma seemed impervious to the chill.  She accompanied us for the 20 blocks we roamed, up and down, back and forth, without complaint.  We stopped along the way to buy her a cupcake, where one of the customers standing in line upon seeing us, was heard to say, “This is what I love about New York City – the people have such commitment!”

We attempted to teach Emma to say Trick or Treat and either take a piece of candy from the bowl being offered or open her bag so that the offerings could be dropped inside.  She never really got either action down and by the end of the night I stopped trying to coach her.  She was content to walk along with us, watching Nic dart in and out, filling his bag.

Nicky!  Nicky L!” Emma occasionally shouted when she lost sight of him.  By the time we returned home, Emma struggled out of her witch’s costume, replacing it with one of her many princess dresses, where upon she dug into her cupcake with relish.

“Yum, yum!”  Emma said, smiling broadly, her face covered in icing.

Halloween 2010 – Emma, Richard & Nic

The Shower

This morning I told Emma she had to take a shower and wash her hair.

“One more minute,” came the response.  This is the standard response to almost everything asked of her.

“Okay.  One more minute,” I said.

“Don’t you make me come get you,” Emma said with a sly grin, the pronoun confusion in full swing.

“Oh I’m going to come get you!  I’m going to come get you right now!” I said, pulling her legs as she shrieked with laughter and flailed about.

Once in the bathroom, Emma turned on the shower, undressed and stepped in.  “Ewwww!  Too cold!  You have to wait,” she said as she retreated to the safety of the room.  Tentatively she put her hand in to test the water.  “Nice and warm,” she announced before stepping into the shower.

“Okay, Em.  Remember you have to take the shampoo bottle and open the top.”  As I spoke, reminding her of what the steps were, she did as I said.  She put shampoo on her head and stood still.  “You have to rub the shampoo in.  Remember?   You have to wash your hair,” I reminded her.

“You have to wash your hair,” Emma repeated.

With a little help, Emma managed to wash her hair.

“Towel!  I need a towel!” Emma said, using the correct pronoun.

“Here you are!” I said, offering her a washcloth, which she held over her eyes.  “You need to rinse your hair, Em.  You have to get all the soap out.”

“You need to rinse,” Emma repeated.

I then walked her through washing her body with soap, naming each body part, reminding her she needed to rinse the soap off.  A few weeks ago I received a phone call in the middle of our shower routine and when I returned Emma was standing in the shower covered with soap.  When she saw me she turned the water off and said, “Shower all done!”

“No Em!  You need to rinse the soap off,” to which she took the bar of soap and put it under the water spray – washing it off.  “Your body, Em.  You need to rinse the soap off of your body,” I corrected myself.

Once out of the shower, unless reminded Emma will simply get dressed or more likely, run to our bed where she will snuggle under the sheets, soaking wet.  “You have to dry off, Em.  Remember?”

Again I name all her body parts.   Upon hearing them, she dutifully dries each part and then runs to our bed, laughing.

“Emma washed your hair,” Emma announced when I joined her in our bedroom.

“Yes, Em.  You did a terrific job washing your hair,” I answered.

“Emma wash your hair again?” Emma said with a grin.  Without waiting for an answer she shouted, “No!  You cannot wash your hair again.  You already took a shower!”

This is Emma’s idea of hilarity.  And it is pretty funny watching her scream with laughter at the very idea of going back into the shower.

That’s our Emma.

A Balanced View

When writing about Emma I am often struck by how other people view what we write.   “She sounds just like my four year old,” is something I have heard more than once.   We walk a fine line of not wanting to exaggerate the tiny steps of progress she makes, with the desire to write honestly about her life as we witness and interact with it.

For example if I write of how Emma is now sleeping through the night, only very occasionally wetting her bed, hasn’t worn a diaper since June 9th, 2010, is verbally more precocious, is displaying wonderful eye contact more and more frequently, seems to understand more, has an increased interest in being read to, tolerates more situations with increasing ease, it sounds almost miraculous.  And in many ways it is.

If I then give a detailed description of a day spent with her – such as yesterday when we went not only to the Bronx zoo, but to a nearby playground afterward – describe how she never once acknowledged the hundreds of children around her, much less exchanged eye contact or words, all the while carrying a two foot long stick which she refused to release even when on the monkey bars, her utterances, her overall deficiencies appear glaring.  If I insist then on adding how she attempted to sit opposite us on the subway, made odd whooping noises and whenever the doors to the subway closed with the accompanying ding-dong sound, Emma cheerfully sang, “Gank – You!” replicating the exact tone of the warning sound indicating all passengers needed to get inside the subway before it left the station, one is left with a very different sense of who she is.  Yet both would be accurate and correct.

A balanced view is the goal of this blog.  Neither an exaggerated version of her abilities nor deficits is what we endeavor.  The trouble is, it isn’t always easy.  Given a mood, a less than ideal night with too little sleep, work stresses, marital stresses, all effect how Emma comes across on paper.  There’s no way to really portray her with all her idiosyncrasies without it seeming somehow off.  I read past posts and barely recognize her or us, for that matter.  The edges are smoothed the disagreements remain just that and not the melodramas they can feel to those intimately involved.  Perhaps it is a positive thing.  In the end we are the stories we tell, we become the edited versions we choose or in this case we choose to tell for Emma.  Who knows what she would say, were she able to.  Perhaps one day she will be able to do so and will choose to.  My guess is it will be a very different story than the one we are telling.

A Conundrum

We are often baffled by words Emma says which we do not understand the context or meaning of.  See Emma’s Language and Sunday Morning’s Conversation for more.   A few weeks ago we were dumbfounded by the utterance, “cheese-solos” which Emma requested over and over again.  Prior to that it was something that sounded like, “atta-tah”.  It turned out the first was cheese doodles, evidently given to her as a snack at her school, but since we never bought them, it took a moment of sheer genius on Joe’s part to make the connection.  The latter turned out to be, “go to town” as in “No we’re not going to go to town.”  Except Emma would say, “No, we’re not going atta-tah.”  Even as a baby, Emma’s first words were, “All done!” though it sounded more like “ah-dah”.  As she has grown older the words continue to confound us, but even when they are intelligible they often do not make sense to any of us.  For the past few weeks in answer to the question – what would you like to do today? – Emma has responded with, “Go to downtown Aspen, push the button game?”

One day last week Joe, determined to get to the bottom of this, spent some two hours in town with Emma trying to figure out what she meant.  He came home as perplexed as when he’d left.

So when Emma said to me, “Downtown Aspen?  Push the button game?”

I inwardly groaned as I knew we would be spending a great deal of time wandering around town trying to find a game which I no longer was convinced she even knew what or where it was played.  But Nic was at the skateboard park with my friend Claudia, so I figured I would go wherever Emma pointed me and see where our adventure took us.

“Go this way,” Emma said from the back seat of the car, pointing in the direction leading toward Independence Pass.

“But Em, that will take us out of town,” I said.

Emma nodded her head.  “Go downtown?” she said with the inflection making it sound like she was posing a question.

“If I turn left Em, we will be heading out of town,” I said, hoping this would clarify things.

“Yes,” Emma said.

“Okay,” I said, taking the next left leading us out of town.  “Is this the right way?” I asked after a few minutes.

“Yes?” Emma said.

“Okay, Em.  You want to go out of town.  This is not downtown, this is leaving town,” I said.

“Leave town?” Emma repeated.

“Where should I go now?” I asked as we passed the turn off to the Aspen Club.

“Go this way?” Emma said.

“Which way, Em.  You have to point,” I said looking at her in the rear view mirror.

“Go this way?” Emma said pointing to the turn off for the cemetery where both my grandparents are buried as well as my father and a number of family pets.

“Oh, do you want to go to the cemetery?” I asked.

“Cemetery?” Emma repeated.  “Push the button game?”

“Okay, Em,” I said as we neared the padlocked gates.  I stopped the car.  “Is this where you play push the button game?”

“No!  Downtown Aspen!” Emma cried.

“But Em, I’ve been asking you where you want to go and you told me to come here. I’ve gone exactly where you wanted, I just can’t understand where it is you want to go,” I said, exasperation and exhaustion crept into my voice.

“Go downtown Aspen?”  Emma managed to say in between tears.

“But Em we just were downtown, remember?  We spent at least 45 minutes downtown with Muzzy in the stroller,” I said.

“Go downtown, push the button?”  Emma repeated sobbing.

“Em.  I give up.  I don’t know where you want to go.  Should we go back to Granma’s?”

“Push the button,” Emma, now inconsolable, cried.

As I turned the ignition on, Richard called asking how things were going and where we were.  He agreed to come meet us at the skateboard park and said he’d take Emma.

The entire way back into town, Emma cried in the back seat, “Push the button!”  Then she paused and said, “Shhhh!  You have to be quiet.  Stop screaming.”  Listening to her I could hear the echo of other people in her life, speaking to her.  Not only was she repeating what had been said to her, she was also adopting the tone and inflection of the many people in her life who have cared for her over the years.

Hours later, while Nic, Claudia and I sat outside the fountain in the middle of town, Richard and Emma appeared.

“Hey!  How did it go?” I asked.

“Well, my theory regarding the push the button game was correct,” Richard said triumphant.

“What theory?” I asked.

“I told you the other day,” Richard said.

“You did not!” I said.

“I did.”

“Tell me.”

“It’s a water sculpture and fountain on the other side of the mall.  If you look at it from a certain angle it kind of looks like a hot tub and she pretends to push a button to make the water jets come on.”  Richard looked at us.

“I cannot believe it,” I said, looking at Emma who was happily sitting on the chair across from me.  “You’re a genius,” I said to Richard.

“The only problem with being a genius is no one recognizes it,” Richard said.

Hope For Emma?

I have spent several hours starting different blog posts over the weekend and this morning, but have been unable to finish any of them.  I am still raw after the phone call Richard and I had with the director of the Stem Cell transplantation program at Children’s Hospital in Boston and the director of the Stem Cell Research Program also at Children’s Hospital in Boston.  See the previous post below, written by Richard on Friday.  An hour after our phone conversation in which they both expressed their concern with the stem cell treatments we have taken Emma to in Central America we received an email from them saying:  “We know that you are trying to do the best for your daughter, but given the issues we discussed, George and I think that you should not go back for stem cell treatment.”

I am feeling overwhelmed with emotions at the moment which is why I am having such a difficult time writing a post.  This blog is about Emma, not my fragile emotional state and though I have certainly written of the difficulties in parenting an autistic child I have tried to always keep Emma front and center – she is the star of this blog.  And yet, it is hard for me to write about anything at the moment because this blog is also about our hopes for Emma.  At the moment my hope is in short supply.