Category Archives: Parenting

Entries about what it means to be the parents of an autistic child.

An Afternoon With Emma

Posted on January 31, 2012 by | 6 comments

Joe, Emma’s therapist and all around amazing guy, is sick.  He has a cold and in seven years has never called in sick. Never. Not once.  Seven years.  So I urged Joe to take a sick day, and finally, after much arm twisting, I convinced him.  I admit my methods of persuasion were more threatening than persuasive, but sometimes one must resort to such tactics.  In retrospect, the thing that finally seemed to convince him was when I said something about how I would have to seriously hurt him if one of us caught the nasty bug lurking within his body, or words to that affect.

The end result was – I picked Emma up from school. Never one to pass up an opportunity for a dramatic entrance, Emma came running toward me shouting, “It’s Mommy!”  She was so excited she actually bounced up and down.  Once outside she turned serious, “We have to go to the doctor.”  She nodded her head and looked resigned.

“Not today, Em!  We are not going to go to the doctor today.  Joe doesn’t feel great, so you and I are going to go get some groceries, do our study room and then you’re going to help me make dinner!”

“Grocery shopping, study room, cereal and toast!”  Emma said.

“No.  Catfish, cole slaw and roasted sweet potatoes,” I corrected her.  “And you’re going to help me.”

“We’re going to spend the afternoon together, just you and me,” Em said, pointing to me with an enormous grin.

“Yes, we are.”

Emma then reached over and in a rare display of unprompted affection, held my hand!  Wow.  Typically, holding hands with Emma is like holding on to the tail of a greased pig, in other words, it’s not easy,  a certain degree of tenacity and determination are required.  But yesterday, she reached over and held my hand, her cold little hand in my gloved one and suddenly the clear, blue sky looked a whole lot bluer.  Filled with a sense of awe at the beauty of life, we entered Whole Foods, whereupon I turned to her and said, “I’m going to need your help getting our groceries.”

“I’m going to help you,” Emma said, tossing her backpack and then herself into the back of the grocery cart.

Later, Emma helped me dredge the catfish in cornmeal and flour, while Nic peeled the sweet potatoes and prepared them for roasting.  “Help Mommy,” Emma said at one point.

“Yes, you are.”

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

6 Comments

Posted in Autism, Parenting

Tagged , ,

Breaking Routines

Posted on January 30, 2012 by | Leave a comment

I have written about Emma’s need for routines.  Like many children with autism, the desire to do the same thing, whether it’s watch Mary Poppins for the two thousandth time (not an exaggeration) or go to the Central Park Zoo, followed by a visit to FAO Schwartz and ending with a visit to the American Museum of Natural History, has an obsessive compulsive urgency to it.  Emma has gotten much, much better about being more flexible, but this Sunday morning Emma became fixated on going to the zoo.  Despite the fact she went to the Bronx Zoo with a caregiver the weekend before and the Central Park Zoo the weekend before that, despite the fact going to the zoo is less about leisurely strolling through the various artificial habitats and looking at the animals who reside there and very much about a specific route that must be held to.

During those increasingly rare times I have indulged Emma’s request to go to a place, like the zoo, I end up running after her while she zips from one thing to the next.  At the Central Park Zoo, given her preference, she will begin with a visit to the bat cave, racing past the exotic birds, stand for less than three minutes peering into the dark cave while saying, “Look at the bats!  Be careful, the bats will bite you!” before tearing off, regardless of what I might think to say to engage her in an attempt to slow the routine down, past the Colobus Monkeys and outside again to stare at some other type of monkey who reside on a few strategically placed rocks in the middle of a man-made lake.  Then it’s off to see the old, decrepit and now blind seal, into the penguin and puffin house, then back outside to watch the sea lions being fed.  If we’ve missed a feeding, we must wait until the next feeding.  Emma will patiently sit until the next show and then watch until the last unfortunate fish has been tossed into the gaping mouth of a lucky sea lion, before we are allowed to leave.

But Sunday is the day we try to do something together as a family.  Sunday is the day we attempt to take everyone’s desires into consideration.  Sundays can be difficult.  Nic, more often than not, wants to go see a movie or get together with a family we know who has children Nic’s age, Richard, being the amazing man that he is, is often game to go with the flow and I will do just about anything that doesn’t involve going to one of Emma’s favored haunts.  (Lest anyone think I’m a dreadful mother, may I just defend myself here and say I have been to the American Museum of Natural History several thousand times and would be grateful if I never went there again, literally, for the rest of my life, likewise to the zoo, any zoo for that matter and, while we’re at it, any carousel, anywhere in the entire world.)  It may sound harsh, but there it is.

So when Emma launched in about going to the zoo this past Sunday morning, I said simply, “Not today, Em.”

“Go with Mommy!”  Emma cried pointing at me.  “Just you and me, go to the zoo.”

It was heartbreaking to hear her carefully using the correct pronouns, requesting me, specifically.  Never-the-less I stood firm.  Then Emma brought out the big guns.  “Mommy talk to Daddy,” she cried.  “Mommy talk to Daddy about the zoo.”   It was a stroke of manipulative genius, pitting one parent against the other, knowing that where Mommy wasn’t caving, Daddy just might.  I actually had to leave the room, I felt such a welling up of pride.  She’s becoming quite the negotiator I thought, as I prepared for our “study room” session.

By the time Emma was halfway into our literacy session, the obsession with the zoo had ebbed and when we ended our session with sitting still for five minutes, the obsessive grip no longer held her.   We ended up having a lovely Sunday with Nic and Emma going to their gymnastics class, on the way to Union Square we happened upon an Occupy Wall Street protest, giving me ample subject matter to photograph, before meeting some friends in Union Square.  Emma and I made a brief visit to Barnes and Noble and then home, where we did some more literacy work before Nic and I made custom made hamburgers, cole slaw and french fries for dinner – inspired by the Food network’s favorite burgers show, which aired over the weekend – only ours were better.

Occupy Wall Street Protest

Em waiting for me

The Family – Who’s that devilishly handsome man (Gasp!) with those two adorable children?

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

Leave a comment

Posted in Autism, obsessive compulsive, Parenting

Tagged , , , , ,

Questions

Posted on January 27, 2012 by | Leave a comment

Last night, just to mix things up, Emma watched Lilo and Stitch.  When Lilo says – Aliens are attacking my house – Emma howled with laughter and then repeated that line several times as she was getting ready for bed.   So here are a few questions I have for Emma that I wish she could answer – Why is that line so funny to you?  What does the word, “alien” mean to you?  If you had the words, what would you say the movie was about?

I realize I sound like an annoying english teacher, but I actually really would like to know what she would say, if she could.  And while we’re at it, here are a couple more questions I’d ask if I could:

What do you hear?  Do you hear what I hear or is it different for you?  Is the pitch different, the volume, do other sounds compete with each other?  Is it hard to tune some noise out and concentrate on the person who’s speaking to you?  Is all noise equal?  What do you see?  Is it just like sound?  Do you see patterns?  When you look at your box with hundreds of photographs, do you see the images or do you see a pattern or do you see something else and if you see a pattern, does that pattern soothe you?  What is it about the string you like to hold and twirl, why do you like it?  What does it feel like?  What do you think about?  Do you have questions, but don’t ask them because you don’t have the words?  Do you understand the larger concepts of a story?  A movie?

Finally, the ultimate question, the question I will never know the answer to, even if Emma is one day able to answer all the questions I’ve just listed:

What’s it like to be you?

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

Leave a comment

Posted in Autism, language, Parenting

Tagged , ,

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 , , ,

“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 , , ,

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 , , , ,

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 , , ,

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 , , ,

Flying to Colorado

Posted on December 19, 2011 by | 2 comments

We flew to Colorado for the holidays last Friday.  When I booked our reservations I tried to get all of our seats close together, but despite my most dogged attempts, getting five seats together just wasn’t possible.  Still I was fairly optimistic as I had managed to have Richard and Nic together in the row in front of Joe and Emma with me just needing to trade my window seat for an aisle seat in the same row but on the other side of the plane.  When the gentleman who had the aisle seat next to Joe and Emma, the seat I was hoping to trade him for, arrived, I explained that we were trying to sit together and would he mind terribly if I traded my lovely window seat just two seats over for his aisle seat.  No, he told me.  He was not willing to do that.  He then told me that he had a grandson with autism and felt for my predicament, but couldn’t trade seats as he didn’t like sitting near the window.  Not discouraged I asked the woman in the other aisle seat of that same row if she would mind terribly moving over just two seats to the window seat, thus letting the gentleman occupy her seat, while I occupied his.  (I know this is beginning to resemble a Shakespearean novel with a vast cast of characters.  I should have tried to download a seating map for this post.)  The woman, barely looked up, avoided any eye contact and said flatly, “No.” She then proceeded to read her book about the Palestinian/Israeli conflict.  By this point, all the passengers within three rows of us, were aware of what was going on.  Undeterred, I asked a few more people seated in an aisle seat if any would mind trading with me.  I was rebuffed each and every time.  At this point with my options becoming fewer, I decided to try and solicit the help of a flight attendant, though in the past this has never proven helpful.  Never-the-less off I went in search of a flight attendant while the gentleman took his seat next to Joe and Emma.  As I headed up the aisle another man, sitting several rows behind us, said he would trade his aisle seat for my window seat.  As the trade took place he leaned over to the first man and said, “You know, you could have helped her out.”

I thanked the man profusely and asked if we could buy his lunch.  He declined, said he flies at least once a week and it was no big deal.  I thanked him again and sat down.  Joe and I have been reading some material about speech and literacy, so we began to discuss how we might best apply what we were reading to our work with Emma.

About an hour into the flight, the man whose seat I was now occupying leaned over to me on his way back to his seat and said, “Forgive me.”

“Please,” I said, “don’t worry about it.”

“No.  I should have given you the seat.  It was wrong of me.  That man who volunteered, I’m proud of him.”

“Thank you for coming over,” I said.  And he sat back down.

A couple of things I keep coming back to, are not so much how people are not willing to move their seats, I understand it’s a pain.  Traveling has become hellish, everyone has just been through security lines, removal of shoes, waiting, standing in line and finally they get to their seat, the last thing anyone wants is to be asked to move.  I hadn’t realized the window/aisle conflict was such an issue.  I had thought as long as it wasn’t a middle seat it wouldn’t be hard to trade, but clearly this was incorrect.  But it made me think about the airlines themselves.  Is there not something the airlines could do for families traveling with children with disabilities?  I don’t know the answer to this question.  I don’t know how they could help, but it does seem that the airlines would do well to at least have an awareness that this is a growing problem.  We go through some sort of problem almost every time we travel.  I have gotten better at choosing seats that, while often not together, are at least seats people might be willing to trade.  But every now and again my best laid plans run amok.

The Rockies

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

2 Comments

Posted in Autism, Parenting, travel

Tagged , , , , ,

The Dentist

Posted on December 15, 2011 by | Leave a comment

“Go see new dentist,”  Emma said, when I told her she had an appointment.

I am always unsure what Emma intends when she makes statements like this.  Does this mean she doesn’t like her dentist?  She wants to go to a different dentist?  For some reason she is associating him as the “new dentist” even though she’s been seeing him for the past four years?  Or is she saying this for some other reason I have yet to figure out?

“You have an appointment with Dr. L.”  I waited to see if she would respond.  “Do you like Dr. L.?”  As I asked her this I thought about the question.  This is the guy who put a mask over her face and asked her to breathe in fumes until she was unconscious in the hospital to fill two cavities a few years ago.  His was the face she saw when she came to with a sore throat from having a tube put down it.  This was the man who was responsible for the two metal caps on her teeth, the metal caps that, upon waking, she tried to physically pry off with her fingernails.  Was that really a fair question?  Why would she like her dentist?  I’m not even sure I like him.  Okay, so that’s unfair.  I am grateful to him.  He’s a good dentist, he is kind and respectful of her.  He tells her what he’s going to do before he does it, even though he has a habit of asking her if she’s okay when he’s got both hands in her mouth and she clearly cannot speak in any recognizable way.  Or if she tries to nod her head yes, he then tells her to hold still.  I think they must teach this at dentistry school as a way of keeping the patients mind off of what’s actually happening.  I’ve never met a dentist who didn’t try to carry on a conversation while you sit there with a bunch of tools and hands in your mouth.  Doesn’t anyone ever tell them?   We cannot answer you.  Can’t you see our mouths are open and we are unable to speak?

But let’s get back to the appointment – Emma ran into the office, saw a stuffed beast of some unidentifiable species with a full set of teeth and plopped herself down in the chair while cradling the stuffed thing in her arms.

“What is that?”  I asked, trying to figure out if it was a horse, a giraffe or something else.  Frankly it was creepy whatever it was.  The full set of teeth looked frighteningly real, as though they’d been plucked from some poor unsuspecting person’s jaws.

“I don’t know,” the dental hygenist answered.

“Monkey,”  Emma stated matter-of-factly.

Case closed.

This from a child who does not typically show even a passing interest in toys of any kind, including all manner of stuffed animals.  But for whatever reason, this thing had captured her fancy.  Emma sat still holding the toothy “monkey”  while the dentist explained how her teeth are particularly porous and so food tends to adhere to her teeth, meaning it is essential she floss better than she already does.  In other words we need to help her more than we are.  She tolerated having her teeth scraped, her gums poked at and then her teeth cleaned with a bubblegum flavored toothpaste.  She let the dentist spray her mouth with water and allowed them to use the little hose that sucks all that water out again from her mouth.  For the first time the technicians were even able to take x-rays that resembled teeth and not a blurred image one might see in a Chelsea art gallery.  Emma brought the “monkey” in with her for the x-rays.

I was told some teeth (including that shark tooth) would have to be pulled, but we need to make an appointment with the orthodontist when we return from Colorado in January.  We will have to revisit the whole braces idea at that time too.   And throughout this whole process I kept thinking about how our insurance won’t cover any of this.  The good news is – she didn’t have a single cavity.

At the end of the appointment Emma put the monkey back on the shelf and said, “Bye, bye monkey.  It’s time to go home now.”  Then she skipped out, waving to everyone as she went.

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 , , ,

An Epiphany

Posted on December 13, 2011 by | 8 comments

I was thinking about progress, Emma’s specifically.  Through the literacy program we embarked on just exactly a year ago now, Emma is reading and writing in full sentences, we are also working on comprehension.  Her language is beginning to change as a direct result of all of this work.  As I was thinking about this yesterday, I realized something that probably seems obvious.

Drum roll please.

If Emma continues to make the sort of progress she’s made in the past year, we have nothing to worry about.

(Richard is yawning right about now.  He has maintained this for years and continually reminds me of it, but when he says it, it seems hard to believe.  Okay, now he’s rolling his eyes and probably has walked away.)

I know this may seem like less an epiphany and more a random thought that anyone who’s been reading this blog will have come to, and probably quite a bit sooner than I have.  But here’s the thing.  Sometimes I am just too close to it all.  I’m in the trenches, working with her, everyday, observing and noting.  But pulling back, taking the longer view, seeing Emma from a distance, well, it’s just much harder for me to gain that perspective.  Whenever I am able to and do though, I can see how far she’s come.  I am filled with excitement with her progress.  And yes, it feels as though I’ve had an epiphany.

Unfortunately I have a short memory.  So it’s important I write this down.  Maybe I’ll even remember to reread this post some day when I have forgotten and am feeling discouraged again.

On April 9th, 2011 we began her first literacy session.  We began with the word “sit.”  Prior to that we had worked on letter formation and sequencing with colored tiles.  From that day in April, Emma is now writing sentences in answer to questions such as – “What is this?”  “What is she doing?”  “What does she want to do?”

This is a sample of Emma’s writing answering those questions from this morning’s “literacy session.”

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

8 Comments

Posted in Autism, literacy, Parenting

Tagged , , ,