Category Archives: Autism

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

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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

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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

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Pooh Bear and Emma

Posted on January 26, 2012 by | 3 comments

Often before bed Emma asks if she can watch one of two movies – Mary Poppins or Winnie the Pooh.  She has been watching these same two movies for the past five years and in the case of Winnie the Pooh, going on eight years.   Typically we tell her she can watch whichever movie she’s chosen for twenty minutes or so before bedtime when I read to her.  Last night she chose Winnie the Pooh.  I sat next to her, but wasn’t really paying attention as I was reading an email, when I realized she was talking and looking over at me.  This was unusual.  Emma will often repeat much of the dialogue, particularly her favorite parts of the movie which, having watched literally thousands of times, she has memorized.  But last night she wasn’t just repeating the dialogue.  Last night she was talking – about the movie – to me!

It took me a couple of seconds to understand what she was saying, but it went something like this.

Emma laughing.  “He’s stuck!”  More laughter.  “He can’t get out.  Ooof!  Pooh bear is stuck.  Yeah.  He cannot get out.”  Emma points to the screen while looking at me.

I look at the television, inwardly feeling nothing short of elation that she is initiating contact, that she wants to share her amusement at Pooh’s predicament with me!  “Oh no!  You’re right.  He’s stuck.  He ate too much honey.”

Emma nods her head.  “Don’t… feed… the …bear!” she shouts at the same time that Rabbit says this while pounding a sign with these words into the ground with his fist.  “Rabbit’s angry!”

“Yes, he is!  He doesn’t want Pooh stuck in his house.”

“Pooh can’t get out,” she says, laughing.

“Pooh was so hungry, he ate and ate and ate all of Rabbit’s honey.”

“Now he can’t get out.”  Emma says, watching the television.

“He ate so much, his belly got so big, now he’s too big to get out.”

Emma shrieks with laughter.  “Oh no! Oh no!  I’m stuck!”

“You aren’t stuck, Em.  Who’s stuck?”

“Pooh’s stuck!”

This continued throughout the entire scene until Pooh gets thin enough that he can be pulled out.  While Christopher Robbin and the rest of the animals pull Pooh bear, Rabbit pushes him from behind and he finally shoots out of the hole like a cannonball and lands inside of a tree, which just happens to be filled with honey.

“Pooh’s eating!  He likes honey!”  Emma says, pointing to the part when Christopher Robin says – Don’t worry Pooh.  We’ll get you out!  (of the tree) and Pooh says, through mouthfuls of honey – Don’t hurry!   Yum!  Yum!

Emma thought this hilarious.  “Oh no!  He’s stuck again!”  Then she collapsed into a fit of giggles with her hand on my arm.

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

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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

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Posted in Autism, Parenting, sensory issues

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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

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Posted in ABA, Autism, Dr. Marion Blank

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“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

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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

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Posted in Autism, Siblings, special needs

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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

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Posted in Alternative Therapies, Autism, Parenting

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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

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Posted in Autism, New York City, Parenting

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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

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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

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Posted in Autism, Marriage, Parenting

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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

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Posted in Autism, music, Parenting

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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

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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

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Posted in Autism, Simon Baron-Cohen

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