Tag Archives: autistic

Em’s New Shoes

Posted on January 25, 2012 by | 4 comments

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

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

“Together,” was Emma’s reply.

“Yes, we are going to go together.”

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

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

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

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

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

“Yes!”  Emma said.

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

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

In patent leather.

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

And fancy stitching.

“You want to try on these?”  I asked.

“Yes.  I like these,” she said.

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

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

“Yes.  I like them.”

“Will you wear these if I buy them?”

“Yeah!”

“Okay, Em.”

Em’s new shoes

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

4 Comments

Posted in Autism, Parenting, sensory issues

Tagged , , ,

From a Mom in Melbourne

Posted on January 24, 2012 by | 2 comments

The following is a comment from the “Redefining Autism” post written by an Australian mom with two children on the spectrum.

“It is what our education department in Victoria does.  They make it so hard for children to qualify under their own made up criteria for what they will actually fund as being autism.  One of those being a severe language delay.  Problem solved, then they just don’t count all the students with an actual diagnosis of autism only those they will fund at school.  They also don’t count the children in my region ( my own 2 included ) who have severe autism, but attend schools for the intellectually disabled.  If you attend such a school you are funded as intellectually disabled and not autistic and so they do not count you in their figures as autistic, never mind where we live, unlike the rest of the City, there are no autism specific schools beyond the age of 9.  Such schools are zoned, so even if we could travel there we wouldn’t be accepted as the schools are so full.  If you can’t survive in a mainstream school with minimal support you wind up in a special school for the intellectually disabled or homeschooled.

We just had a review of autism education provisions for our region, which I was involved in instigating and the Education Department again only released the figures of those students who recieve funding for autism.  It is wicked, given that this region of Melbourne has the highest incidence of autism, but we will never know just how frighteningly high because they only count some students not all those with a medical diagnosis.  One local politician described it as a tsunami.

I read the article you mentioned a few days ago and it is just more of the same.  There is an epidemic – I can see it.  My husband has work mates who have children with ASD, we have friends we knew before they had kids who now also have children with autism, we have a neighbourhood full of kids with ASD, wherever I go – restaurants, swimming pools, shopping, the library – I see children who are obviously autistic.  They can call it what they want, but it isn’t going away.”

Emma was diagnosed with PDD-NOS  (Pervasive Developmental Disorder – Not Otherwise Specified) at the age of two years and nine months.   Given the new criteria proposed, Emma would not have been eligible for the services she was given, which included speech therapy, occupational therapy and Applied Behavioral Analysis (ABA) as well as Verbal Behavior  (VB).  While I take issue with the standard form of early intervention – ABA & VB – as it did not help Emma, we were able to find an early intervention therapist versed in Stanley Greenspan’s DIR (Developmental, Individual-difference, Relationship-based) model, which was at least a bit more helpful.  I have no idea whether Dr. Marion Blank’s program for children would have been covered had we known about it, but it might have been.  Had we begun Emma on Dr. Blank’s program when she was first diagnosed, we would undoubtedly have a child who was now mainstreamed, saving the state and ourselves an enormous amount of money, not to mention heartache, stress and emotional trauma (hers, as well as ours).  I say this with confidence because now, at the age of ten, Emma has made more progress in the past year that we have been working with Dr. Blank than she has in six or even seven years put together.

My distress is two-fold regarding this new proposed criteria and the ongoing discussion regarding autism.  The first is that shifting numbers will not change the fact that the rate of autism has far outpaced our ability as a society to cope with it, and secondly, the standard way of treating autism – ABA and VB being the gold standard, needs to be reanalyzed with better and more stringent studies.  There are a great many children whom ABA/VB have not helped who can be helped with other methodologies.

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

2 Comments

Posted in ABA, Autism, Dr. Marion Blank

Tagged , , , , , , ,

“Thriller”

Posted on January 23, 2012 by | 2 comments

For Emma’s birthday, Joe gave her a video montage with Michael Jackson’s incomprehensible song – Wanna Be Startin Somethin – playing in the background.  Emma loves playing the DVD and calls it – “Thriller.”  Despite our corrections, she is resolute.  Saturday night she put the DVD into the player and then said, “Halloween!” and ran to the costume chest.  “Want to put on halloween costume?”

“But, Emma it’s not halloween,” Richard told her.

“I think she wants to put on a costume like she does on halloween,” I said.

After a good bit of rummaging around, Emma pulled out a costume, ran to her room and several minutes later burst forth wearing this…

“Watch Thriller,” she announced before settling down on the couch to watch the video montage Joe had put together for her.

*Just in case anyone is curious, we correct Emma when she makes these types of grammatical errors.  For example in the above comment, I said, “You want to watch your video?”  To which she responded, “Yes, I want to watch my video.”  With repetition we have seen an enormous uptick in Emma’s spontaneous language as well as an increase in her ability to say grammatically correct sentences without our intervening.  The pronoun confusion, while still present, has gotten much better as well.

Richard and I have a running joke regarding MJ’s lyrics, something neither of us can understand without printing out the actual lyrics, still, as a nod to our advancing years, we use phrases like “new fangled” and “these kids” while shaking our heads.  Thankfully Richard finds all of this as humorous as I do and we have each come up with obviously ridiculous lyrics, which we then suggest are the actual lyrics.  “Do you think he just sang, go to the post office?”  “Yeah, post a letter, I’m pretty sure he just sang that.”  So I wasn’t surprised when Richard said at one point, “He just said, “You’re a vegetable.”

“I am not!” I responded with feigned indignation.

“No.  Seriously, I think he just sang, You’re a vegetable.”

“Uh-huh.  Yup.  I think you’re right,” I said, nodding my head and grinning at him.

“I’m being serious.  Do you think that could be part of the song?”

“Oh yeah,” I said with an exaggerated tone, “You’re a vegetable.  I think that has to be right.”

“I’m going to google it,” Richard announced.

A few minutes later Richard returned, “Look!” he thrust a sheet with the lyrics printed on them and there it was in black and white – “You’re a vegetable, You’re just a buffet, You’re a vegetable,  They eat off of you, You’re a vegetable.”

Richard looked at me.

Meanwhile, Emma continued to bop her head up and down as she watched the slideshow of photographs from the past year of herself, that all of us have taken, wearing her witch costume.

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

2 Comments

Posted in Autism, language, Parenting

Tagged , , ,

Emma’s Brother

Posted on January 19, 2012 by | 2 comments

Emma’s school has a sibling group that meets every other week.  The neuro-typical siblings meet for an hour, eat pizza, play games in the gym and generally just hang out for an hour or at least I think that’s what they do.  Nic, who turns twelve in another few months, has no interest in going, so we have never been.  For the past few weeks though, I’ve been encouraging him to give it a try.

“Why not?” I asked him the other day.

“Why would I want to go to her school and be with a bunch of kids I don’t know?” Nic looked at me and then asked,  “Will she be there?”

“No.  That’s kind of the point.  It’s time you can spend without her.”

“Why would I want to do that?  I’d rather go if she was going to be there.”

“Well, you might meet some other kids and find you liked them.  You might make some new friends.”

“But Mom, I have all the friends I need right now.  I don’t need any more friends.”

“What about the idea that you might meet some kids you like who also have a sibling with autism?”

Nic stared at me, seemingly dumbfounded.  “Why?”  he finally asked.

“Well, so you won’t feel so alone.  Because it might help to feel you could talk about it with another kid, because, maybe…”

“Mom,” Nic cut me off.  “I don’t feel alone and I can talk with you and Dad if I feel like it.”

“Don’t you ever want to talk to someone else though?”

“No.”

When Nic was in Kindergarten, less than a year after we received Emma’s diagnosis, we took him to a child psychologist where he did “play therapy.”  This was in the days when he was drawing lots of bloody monsters who ate people.  He would spend hours on a drawing or painting, which he would then present to us proudly.  Red, one of his favorite colors, predominated as the depiction of blood was a prevalent theme.  Blood, carnage, gore, guts, people being decapitated and eviscerated, huge, frightening monsters almost always with severed limbs hanging from their mouths, were common subjects in his earlier work.  Then he went through a phase of depicting serial killers, chain saw murderers and any manner of brutal and horrifying creatures.  Richard would proudly shake his head and mutter something about how the apple didn’t fall far from the tree.  And it’s true, Richard and Nic share their love of horror and gore.  But when Nic’s second grade teacher called us to inquire if everything was all right at home because Nic’s graphic artistry was seen as being extreme, we had to have his psychologist speak with the school, assuring them that all was well.

A few years later when Nic’s homework load increased, he chose to stop going to the psychologist with the understanding that he could always go back.  However he has never wanted to.

Still, the sibling group seemed like a good idea, so I’ve been encouraging him to give it a try.

“It wouldn’t hurt to go just once.  You never know, you might find you like it,” I told him.

“Yeah, maybe,” Nic said, though it seemed like he was saying that so I’d stop pestering him more than because he thought it was a good idea.

“They’re having another one in two weeks.  Maybe you’ll feel like going to that one,” I suggested.

“Yeah, maybe.”

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

2 Comments

Posted in Autism, Siblings, special needs

Tagged , , ,

Supplements

Posted on January 18, 2012 by | 2 comments

A couple of years ago I was told about a doctor who worked miracles on people and it was suggested I go to him for a consultation with the hope it might help Emma.  His office was on the upper west side in a beautiful old brownstone, the interior wall of the office was a waterfall.  The doctor ushered me into his private office and handed me his driver’s license.  I was a bit taken aback, but politely took it.  He said, “Guess how old I am?”  When I didn’t respond he said, “Look at my driver’s license, I bet you wouldn’t have guessed I was that old.”

He was right.  His driver’s license told of him being over 60 years old.  He certainly could have been in his fifties.  I handed him back his driver’s license.  “I’m actually here about my daughter,” I said, lest he misunderstand my intentions.  We then went on to discuss Emma and the various specialists we’d taken her to.  He listened and to his credit told me, without much enthusiasm,  he might be able to help her, but that he would call me in the next few days, something he never did, for which I am grateful.  He did however give me the book he’d written.  It was on blood types and how specific foods should be avoided depending on one’s blood type.  I decided to try what the book suggested and for a couple of months ate only the foods for my blood type.  Other than finding pomegranates do not agree with me, there were no other benefits.  I never did take Emma to see him.

When Emma was first diagnosed I was frantic to find help for her chronic constipation.  We went to at least a dozen different GI doctors and alternative healers.  Not one of them suggested giving her magnesium until I took her to the naturopath this past October.  Yet, magnesium is a supplement that has helped her.  Another beneficial supplement for Emma has been melatonin, given before bed, it helps her sleep.

Currently we are giving Emma seven different supplements, a zinc drink, cod liver oil and nordic fish oil.  Emma is terrific about taking all of it every morning and evening without complaint.  However, the deep cracks on her feet have not healed and the rash on her inner arm continues unabated.  I will continue my search.

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

2 Comments

Posted in Alternative Therapies, Autism, Parenting

Tagged , , , , ,

Happy Birthday Dear Emma

Posted on January 17, 2012 by | 6 comments

Emma’s birthday is today, but her birthday party was this past Sunday at an enormous gymnasium here in New York City.  She asked that we invite some 18 children, many of whom could not attend, but eleven children did, including Em and her older brother, Nic.  Seven of those children were on the spectrum.

When the children began arriving, Emma seemed uninterested and barely acknowledged them.  I told myself she was overwhelmed, that just because she asked for all of these things, perhaps once it became reality, she wasn’t sure what to do.  I tried to talk myself into a more accepting frame of mind, but if I’m being honest, I had expectations.  Expectations that, I realize now, were completely over and beyond what could realistically happen.  This isn’t unusual for me and it is something I am trying to become more aware of.

There is a great deal of talk about preparing one’s child for these sorts of events, going over the list of children who will be coming, talking to Emma about what will most likely happen, the various activities they will do, how she will need to wait her turn, how they will do a great many different things, how we will then have food and cupcakes and birthday cake at home later.  But there isn’t a great deal of talk about preparing oneself.  Frankly, this is where I need to do the most work.  I was utterly unprepared for Emma’s unenthusiastic response to all the other children.  I was unprepared for her to not only not pay attention to them, but to stand in front of a mirror toward the end of the party and make faces at herself while singing and dancing.  When anyone else tried to join her she would turn her back on them or move away.  The truth is, I was unprepared for exactly what happened and found myself feeling disappointed.  When I step away from all of this and put my emotions aside, after all this was not my party, it was hers, I think Emma had fun.  I think she was happy.  I think if she could tell us, she would have said her party was exactly what she wanted.

Happy Birthday Dear Emma!

Emma waiting for her turn to jump into the foam pit

In the foam pit

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

6 Comments

Posted in Autism, New York City, Parenting

Tagged , ,

Hook Worms & Obsessions

Posted on January 13, 2012 by | 4 comments

It’s easy to poke fun at any treatment which includes the words “hook worms.”  I remember when I first heard about hook worms in treating autism, I immediately thought of leeches and dismissed the whole thing.  By the way this post is not about hook worms, but about how when your child has autism you are constantly confronted with an endless array of “treatments,” almost all of which come with some kind of “scientific” explanation.  This isn’t necessarily a bad thing, a great many smart people are trying to find help for our kids, but it is often confusing.

For those who want to know more about hook worms or Helminthic Therapy, here are some links:  The Guardian, Autoimmune Therapies, for a counter argument against helminthic therapy (hook worms) and for a number of studies being done through various hospitals in the country go to:  http://www.thebostonchannel.com/health/23652453/detail.html, http://www.neurology.wisc.edu/publications/07_pubs/Neuro_5.pdf, http://www.direct-ms.org/pdf/HygienePrinciples/Helminiths%20immune%20reg and www.pubmed.gov.

I am currently reading a book – Obsession:  A History by Lennard J. Davis.  What’s fascinating is how our perceptions of “illness” continue to change.  What began as “demonic possession,” something the Catholic Church cornered the market on by performing exorcisms, the Protestants, attempting to lessen the Catholic church’s power, redefined demonic possession as “nerves” or madness.  This new way of thinking caught on.  What began as a play for power came to define what became  known as “a case of nerves” or the belief that some people were high strung something mainly afflicting the upper classes.  Presumably the lower classes, the peasants didn’t have time to be high strung or if they were, they didn’t have the means to do anything about it.  In reading about the nature of illness and how it has changed over the centuries, it is striking to note how little we knew then (it seems laughable) yet, there is still so much we still do not know or understand.  The remedies applied in the eighteenth century seem bizarre, but in the context of autism, no more bizarre than so many of the remedies I have tried on my own daughter.  I expect that in fifty or a hundred years from now we will look back on much of what we think we know or do not know regarding autism and think how barbaric it all was.

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

4 Comments

Posted in Alternative Therapies, Autism, Parenting

Tagged , , , ,

Lucid Dreaming

Posted on January 12, 2012 by | 7 comments

Richard spent (he claims it was just half an hour, but I swear it was a lot longer than that) last night talking to me about lucid dreaming.  When he had finished reading choice chapters from one of the many books he is currently reading on the subject, he moved to the copious notes he’s taken.  When it was all over, after I had learned that certain molecules along with serotonin are released producing a “dream state,” after he had finished hypothesizing how Emma’s “autism” seems somewhat similar to the dream state he’s been reading about, one in which our senses are jumbled and different than in our “waking” state, after he had finished telling me about his own theories, questions, thoughts and opinions, he said, “What do you think?”

My brain, a jumbled mess of information, bursting with an overflow of information ranging from the physical to the metaphysical to quantum physics to quantum mechanics was in no state to produce meaningful additions to the topic at hand.  Science was never a subject that captivated me, unlike my mother and two of my brothers – one’s a physicist, the other a bio-chemist.  Clearly the science genes were used up on them and by the time I came along there just weren’t any left.  Never-the-less, I did my best to formulate some kind of not-too-ridiculous-comments, which I only prayed related to all that he’d been talking about.  As I did this, I looked over at him and felt overwhelmed.  Not by the subject matter, though I admit, I did feel a bit overwhelmed by that too, but I am referring to the feeling I felt.  It was the same way I felt when I first met Richard.  It was as though I was falling in love all over again.  Not that I had fallen out of love, more like just falling deeper or maybe it’s more accurate to say I felt myself aware that I continue to fall, that I’ve never really hit the bottom, there’s not been a stopping, that it’s a continuous falling in love that doesn’t end.  There was something about the look on his face, a certain intensity, his brain whirling around with all of this information, his trying to make sense of our Emma, the studying, the research, his ability to see things differently, his way of being in this world, yet always searching for other ways to view it…

I love that man.

No one could have told me that when we had our two children, I would end up loving my husband more than I already did.  No one could have described to me the feeling of gratitude I would feel on a daily basis toward this man who has been as actively involved in child-rearing as I have.  No one could have told me any of that.

And if they had, I wouldn’t have believed them.

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

7 Comments

Posted in Autism, Marriage, Parenting

Tagged , , , ,

Emma and the Air Guitar

Posted on January 11, 2012 by | 2 comments

Emma has learned to play the air guitar.

There.  I’ve said it.

Words I never anticipated saying, let alone writing.

Last night I arrived home to see Emma, wearing a nightgown she had long ago outgrown, dinghy and grayed from years of washing in organic, environmentally safe detergent, strutting around the living room to music blaring at decibels rarely heard outside of professional performance spaces.  Her right arm ramming down on imaginary strings, her left holding an imaginary microphone as she sang the lyrics or what she thought were the lyrics to Michael Jackson’s song Beat It.  When she doesn’t feel confident of the words she lip synchs, dances and well, plays the air guitar.  The other night, Nic commented, “Look Mom.  Emma’s like one of those backup dancers.  She’s really good.”

I have since printed out the lyrics to the song as I could not figure out how Emma’s words “… show em your pocket…” could possibly be part of a song about coming of age and manhood, unless said pocket contained a knife.  But never mind.  Each time Emma came to that part of the song, she’d thrust her hand into the pocket of her bathrobe for emphasis.

The actual lyrics are – “Showin how Funky Strong is your fight It doesn’t matter who’s wrong or right Just beat it, beat it, beat it..”  I’m not sure I have the heart to correct her, she so loves theatrically shoving her hand into her pocket.  It will come as a blow, I know.  However, for the sake of using moments presented to us as teachable ones, I will show her the actual lyrics.  It is perfectly plausible Emma may not care what Michael Jackson’s lyrics are, artistic license (hers) being what it is and all that.

We have come a long way since her Carole King’s Chicken Soup phase.

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

2 Comments

Posted in Autism, music, Parenting

Tagged , , , ,

Conversing With Emma

Posted on January 10, 2012 by | Leave a comment

“Mommy, I want to make pancakes please!”  Emma said sweetly the other morning.  A simple sentence, no big deal, right?  Except to us it was an enormous deal.  Pronouns all in their proper place and used appropriately, a polite “please” added at the end to ensure a positive response to her request, how could we say no?  And since it was the weekend, we didn’t.  Though we did tell her, she would need to wait a little while, which she did.

Someone, years ago, asked me what I hoped for when it came to Emma’s progress and I responded with something about giving my right arm if she would only ask me for something.  At the time, it was a worthy objective.  Please, just let her ask me for anything and I’ll be happy.  Thankfully I did not have to relinquish a limb for her to get to that point and now those requests have become commonplace.  “Mommy!  I want to go to the Vanderbuilt Y please,”  “Daddy, I want to go to the New York Botanical Gardens with just Daddy!” or “I don’t want to eat the pear.  Please Mommy, no more pear!”

Now that we have the “I want,” “I don’t want” sentences, we are moving on to the lofty goal of commenting on surroundings.  “Oh look, Em!  Look at the bird outside the window!  Do you see it?”  And then we wait.  “Yes, I see the bird.  There’s a bird flying outside,” Emma might respond or she might then comment on something else.  “It’s raining outside.  We cannot go to the park.”  The idea of using language as a way to connect, a bonding experience or as a way to share an experience with another person remains somewhat elusive, though she is making strides in that direction.  We are not able to carry on a conversation with Emma yet.  But we hope to get there eventually.

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

Leave a comment

Posted in Autism, language, Speech

Tagged , ,

Feelings

Posted on January 6, 2012 by | 2 comments

Emma’s friend, Charlie was upset yesterday.  No one knew what was wrong or why he was so sad.  However Emma went over to Charlie and comforted him.  These are the kinds of things parents are always pleased to hear.  As our children grow older, we come to expect such displays of empathy, even questioning our children when they do not respond this way.

In 1985 Simon Baron-Cohen developed a theory he called mindblindness, suggesting that children with autism have an impaired ability to make sense of others and their own feelings.  He has since amended mindblindness to E-S theory (empathizing-systemizing theory.)  Many people, when confronted with an autistic person’s inability to acknowledge or respond appropriately to their emotional state, assume that person does not care.

Before Emma was diagnosed, I learned of a friend’s death and was crying.  Nic ran over and immediately asked what was wrong and why was I crying, while Emma continued to look at a book.  At the time I thought she was more interested in her book or perhaps didn’t notice I was upset, but I remember feeling a certain uneasiness about, what I believed was, her lack of empathy.  As I have read more about autism and the problems in reading people’s emotions, I see her non-responsiveness as an inability to make sense of  my emotional state rather than indifference.  As Emma grows older, she has become increasingly curious about emotions of all kinds.

“Rip Good Night Moon, make Becky angry.  No you cannot rip Good Night Moon!”  Emma has said, referring to something that happened well over a year ago at her school.  One of Emma’s favorite books is “The Way I Feel.”   A book describing emotions with illustrations reflecting those feelings.  When Emma’s brother Nic is upset Emma, much to Nic’s annoyance, will attempt to make sense of Nic’s upset. “Nicky’s crying.  Nicky wants to go on the carousel,” Emma will say.  Or “Nicky’s angry.  Nicky doesn’t want to go to bed.”  Emma will apply her own reasons for being sad or angry with things that make her feel those things and becomes confused when we explain that Nic is upset or angry about something entirely different.  Still, she is doing her best to make sense of what she is seeing.  She will almost always try to comfort Nic, even if she has come to incorrect conclusions regarding the reasons for his feelings.

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

2 Comments

Posted in Autism, Simon Baron-Cohen

Tagged , , , ,

A Marathon

Posted on January 5, 2012 by | Leave a comment

“It’s a marathon, not a sprint.”  This is a quote from Richard who said that to me one day many years ago.  At the time, we were leaving the office of one of the many doctors we had taken Emma to.  Those were the days when I still fully expected someone to produce the “secret thing” that would cure her.  Like some sort of closed, clandestine group, that if I just knew the secret password, Emma would be allowed to walk past the door labeled “autistic” and enter the one labeled “Neuro-typical” for better or worse.

I had a brief moment during my adolescence when I ran the mile, while my friends were running the 50 or 100 yard dash or sitting on the sidelines, munching on potato chips, I was doggedly doing laps around the quarter mile track at our local school.  I would set a pace for myself, not so fast that I was immediately out of breath, but not too slow that I was able to carry on a conversation.  And I’d stick to it.  Determinedly, often with my head down, listening to my breath, in, out, in, out.  Some days every step was a slog, as though I were wearing cement filled sneakers, my breath labored, every muscle ached, I would think about stopping before I’d hit the mile mark, but other days were bliss.  As a teenager I ran longer distances. I kept running for years just to experience those days when it all felt easy and right.

Just breathe.

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

Leave a comment

Posted in Autism, Parenting

Tagged , , ,

A Moment of Levity

Posted on January 4, 2012 by | Leave a comment

Yesterday, having successfully arrived in Denver and found our gate for the connecting flight to New York, an announcement told us of a short delay.  Emma, who was looking at her book – The Way I Feel – looked up and said, “Angry!  I am so angry!”  As she was on the page in the book describing anger, this was not surprising, however, the gentleman sitting next to her had no way of knowing the context for her words and so looked over at her and said, with an exasperated air, “Yeah, me too!”  Emma then scowled, to show off her angriest face, the man then scowled back before both of them began to laugh.  As I watched this interaction, I realized the man was with his wife and grown daughter, who were sitting directly across from us, both of whom were laughing so hard they had tears running down their cheeks.

Both our flights were, thankfully, uneventful.  We arrived in New York after 11:00PM where it was zero degrees with the wind chill, having left balmy Aspen, Colorado where it was in the upper forties.  Go figure.

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

Leave a comment

Posted in Autism, travel

Tagged , , ,

Prepping Emma

Posted on January 3, 2012 by | Leave a comment

We are flying back to New York City today.  As with most outings, we prepare her in advance.  Emma has become more aware of time in that she has been counting down the days until we fly home.  “Last day at the indoor pool,” she will say under her breath or “That’s it, no more skiing.  That was the last day of skiing.”

For the past week or so she has increasingly talked about going back to school, mentioning her friends and teacher and made references to things she wants to do in New York and the people she expects or would like to see.  Yesterday she helped clean up and gather her things to pack.  “Time to go back home,” she said at one point.  One year we were fortunate enough to be invited to fly in a friend’s private plane.  For the next few years Emma said, “Take just one plane,” with the hope that we would, once again, be able to fly straight from New York City to Aspen without stopping or going through the long lines of security and dealing with the large airports with their many delays and flight cancellations.

We walk her through the day by saying things like, “We leave on Tuesday, Em.  We’ll drive to the airport and say good bye to Granma.  Then we have to check our bags and go through security.  I will probably be pulled aside, so you’ll need to stay with Joe, Daddy and Nicky at the gate until I can join you.”  Often during this, Emma will join in, “We have to get on the airplane and fly up, up and then land at the other airport.”

We go through as much as we can with her, but there are inevitably issues which arise that we have no way of anticipating such as running into people we know, flights getting cancelled, luggage getting lost, alternative routes needing to be taken because of unforeseeable weather conditions, etc.  We do our best to make contingency plans, but fortunately Emma is a great traveler and most of these things she will take in stride.

I have seats all together today, so unless they change the aircraft on us, we should be able to sit altogether.

“We have to take a taxi,” Emma said, as I was going over our schedule this morning.  “Then we get to go through the tunnel and go home!” Emma said before running downstairs for one last morning of chocolate chip pancakes.

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

Leave a comment

Posted in Autism, travel

Tagged , , ,

The New Year

Posted on December 30, 2011 by | Leave a comment

I asked Nic this morning if he was looking forward to anything in particular in the new year.

“To sleep in,” he said with a grin.

“Really?”

He laughed, wryly (I might add) and nodded his head.

What I didn’t say, but thought, was – We’ve been on vacation since the 16th!  You could sleep in every morning if you wanted.  But Nic likes sleeping near his Granma and so has set up a little bed in her office for himself on her foldout couch with the promise that he make up his bed every morning, which he has.

“Hey Em.  What about you?  Are you looking forward to anything in the new year?”

Emma ignored me.

“Do you know what it means to look forward to something?” I tried again.  “It’s when we feel excited about something that hasn’t happened yet.”  I waited as Emma who had turned her back to me, continued to twirl her string that she has now “repaired” every morning since we’ve been out here.  The “string” resembles a snow board in the middle with long, thin tentacles coming out of the repaired part.  She holds onto the fat, taped part and twirls it in her hand very quickly.  “Hey Em,” I tried again.  “Are you looking forward to anything?”

“Yeah,” she said, staring out the window.

“What?  What are you looking forward to?”

“Uncle Victor and Aunt Susan took a train home,” Emma said, nodding her head, twirling her string and looking sad.

“Does that make you sad?”

Emma looked at me with such a sad expression and nodded her head.  “Yeah.”

I continued to ask her in various ways if there was anything she was looking forward to or wanted to have happen in the coming year, but Emma walked away or ignored me, until I finally stopped asking.

People have likened Emma to a two-year-old, but this is incorrect.  For one thing it vastly underestimates her and for another, it oversimplifies every aspect of her.  Emma’s mind is capable of some fascinating leaps, she will come out with incredibly creative ways to communicate – such as when her teacher, Lauren every Friday dresses up as “Laurenzo” and so Emma began calling herself Emmaenzo, which she (and everyone else) thought hilarious.  It is easier to think of a child like Emma as a “two-year-old” and leave it at that, but it does her a great disservice.  I continue to insist her mind is far more complex, holds all kinds of interesting thoughts and I insist on this thinking because I have seen too many nonverbal children with autism display staggering intelligence, but who are treated by many as though they are “two-year-olds” or worse.  I have read the poems and stories they have written.  These children and adults are profoundly intelligent, but their thinking and their difficulties in communicating are so vast most of us do not have the patience or interest in hearing from them.

What I wish for, what I look forward to in the new year is for all of us to increase our awareness of our possibilities.  We are capable of so much, whether it is an act of kindness toward another or withholding our judgements when we are annoyed, looking to our potential or assuming the best in one another instead of the worst.   If I could wish one thing for both my children, it would be that they realize their potential, and now come to think of it, I wish that for myself too.

Happy New Year!

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

Leave a comment

Posted in Autism, Parenting, special needs

Tagged , , ,