Category Archives: diets

Another Topic of Controversy… No I am NOT Trying to Find Them, They Are Everywhere

Posted on October 15, 2012 | 88 Comments

Ever feel compelled to write about something that you’d just as soon not talk about?  I’m feeling that way about today’s post for a whole host of reasons which I’ll discuss.  But before I do, let me just say,  this is another one of those topics people feel strongly about.  I’m going to launch in anyway, because I’m either a glutton for punishment or I just can’t help myself or maybe, just maybe, this will strike a chord for others who may find it helpful, but please do remember I am not pretending to be an expert about any of this.  I am going to relate my story.  If it resonates with anyone else, great and if it doesn’t that’s fine too, but it is one of those topics that needs to be discussed.  So let’s do that.

THE DIET.

The gluten-free, casein-free diet was one of the first things I read about after receiving Emma’s diagnosis.  I have to add that when I read about it I had enormous misgivings that had nothing to do with Autism or my daughter.  You see, from the age of fifteen until my mid-thirties I had an eating disorder.  I compulsively over-ate, I sought comfort and solace in food, but I was also morbidly afraid of gaining weight so I would eat enormous amounts and then taught myself to vomit.  Somewhere along the way I became anorexic too and over the next two plus decades yo-yoed between my all time lowest weight of just under 110 pounds to over 160 pounds.  Food and my weight were nothing short of an obsession.  In truth, I was an addict.  For those of you who recognize the addiction analogy with food I don’t need to say more, but for those of you new to this idea, I’ll just say this, food was as addictive to me as heroin is to a junky, the only difference being I can’t ever just stop eating.  I have to “play in the pool of my addiction” as my fabulous husband likes to say.

I’ve written about all of this ‘here‘ ‘here‘ and again ’here‘ for those of you interested in all the gritty details.

In my mid-thirties I found help from other food addicts who were no longer active in their addiction.  I was able to form a whole support team who held my hand, talked me off the ledge, who became my allies and eventually I was able to stop the cycle of binging, puking and self-hatred that went along with those behaviors.  By the time I gave birth to Emma I had more than five years of freedom from my food obsessions. (Which at the time seemed like a VERY long time!)  I had my wonderful support group in place and a road map of tools and behaviors to help guide me.  So when I began reading about “the GF/CF diet” and how critical it was to implement should Emma be one of those kids who responded to it, I had a lot of “feelings” about it.  There was no question whether or not I would put her on it, but I also knew I had to be careful because of my history and what it would inevitable kick up for me.  So I called in my supports, made sure I kept honest, made sure my “team” of recovered addicts knew what I was about to embark on and took a deep breath before plunging into that dark water, which I hoped might help my daughter.

I won’t describe in great detail what happened as I’ve written about the diet in detail, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  You can also go to the right hand side bar on this blog, type “diet” into the search box and you’ll be taken to everything I’ve written on the topic over the years.  The short version of all of this is – we saw little change.  Emma’s constipation was unaffected, there may have been a slight increase in eye contact, but not enough to warrant the trauma the diet was causing Emma, who continued to drop weight at a frightening rate.  I wrote about the trauma of the diet and it’s aftermath ‘here‘.  But I must add that her trauma was a significant and distressing piece to all of this.  It is one thing for an individual to decide they must stop eating something because they know it causes their bodies distress, or allergies that are clearly identifiable and another thing to put a non-speaking child on a highly restrictive diet that they cannot comment on and which is only deemed successful by a parent who is doing their best to watch for measurable changes.

As a new parent who is just embarking on all of this, what do you do?  It was overwhelming for me.  I remember vividly how frightened I was.  There was so much information, often conflicting and I remember feeling the stress and anxiety all that information caused.  I also remember feeling terrified that I was doing everything wrong, that I was harming my daughter, setting her up to have an eating disorder further down the road and since my eating disorder was all consuming and eventually caused me to contemplate suicide, this was no small concern.  I became convinced that there was a right and wrong way, that if it worked it was “right” and if it didn’t it was my fault because I had done it “wrong”.

I don’t feel particularly comfortable giving advice to other parents.  As I wrote in the first paragraph, this is one story and it happens to be mine.  It’s the only one I can tell, but that doesn’t mean it will be yours.  So here’s the only question I can answer – If I had to do it all over again (thankfully I do not!) would I have put Emma on the diet that first time?  The answer is – I would have sought out a reputable pediatric neurologist who could have given Emma the blood work necessary to tell us whether the diet was something she would benefit from.  I would have looked for scientific evidence giving me reason to put her on such a diet and without that evidence I would not have put her through it.  There are enough people, regardless of their neurology, who have benefitted enormously from modifying their diet.  There are too many anecdotal stories of significant change from those who do benefit to ignore it as just another bit of quackery.  BUT, and this a big but, no diet, in my opinion, is capable of changing an Autistic child/person into a non-Autistic child or person.  Or as Karla Fisher gave me permission to quote her said, “… it can and may seem like the autism goes away but it is important to remember that it does not. The EF (executive functioning) and SP (sensory processing) issues get reduced but the context difference will always be there so child will always need support.” *Parentheses are mine.

So let’s discuss and if you disagree, explain why, if you agree, please say so because I really love being agreed with! :)  And if you have some other thoughts about all of this go ahead and say what they are, because this topic is one that comes up all the time and it is confusing, complicated and for new parents can be the cause for tremendous anxiety and worry, not to mention the upset and trauma it can cause our children.

Emma – November, 2011 – after five weeks on the diet

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How I Made a Mistake and Was Given The Opportunity to Say I’m Sorry

Posted on June 5, 2012 | 58 Comments

“You put the toast in the basement.  That made me sad.”  Emma stared at me expectantly.

I drew in a breath.  My chest felt tight.  I knew exactly what she was referring to.  We’ve had similar conversations, but she’s never said it so directly.

This past fall in one last gasp of determined insanity I decided that I hadn’t done the gluten-free/casein free diet “right” when we put her on it a month after she was diagnosed and still two-years old.  So this fall, I took Emma to a naturopath, who’d been recommended to me, and after a number of “tests” he mapped out an even more restrictive diet than the standard GF/CF.   You can click on the links I’ve provided for more about all of this.  On the first day of the diet I cleared the house of all the foods Emma loved, but could no longer eat, according to the new diet.  Except I forgot to remove her favorite bread.

That morning she saw the bread and attacked it with the vigor of a rabid dog.   I whisked it away and hurried down to the basement with it, where I threw it into one of the large garbage bins, while Emma screamed and clawed at the door in an attempt to follow me.  I had it in my mind that it would all be worth it if the diet worked.   Which, to me, meant that she would suddenly begin to speak in beautifully articulated sentences, would be able to concentrate, would be able to comprehend what she read and would eat a wider range of nutritious foods.   Only the diet didn’t “work.”  Just as the GF/CF diet we’d put her on six years before, didn’t work.

Emma after 6 weeks on the diet

In many ways, that diet was a turning point for me.  After a couple of months on it and no change other than a significant weight loss, I reintroduced Emma to all her old foods, the foods she loves, the textures and smells she was familiar with and she was in bliss.  But Emma remembered those seven weeks when I had taken everything away from her.  The trauma she felt as a result of my actions was something I have been aware of.  I have, on several occasions, told her how sorry I am for what I did.  I have spoken at length to her about it, but in all those conversations, Emma has contributed very little until last night.  Now it was clear she needed to express herself.

When I started making decisions about treatments for Emma, many of them Richard did not agree with and he, thankfully, said, “No.  We are not going to chelate.”  Or “No.  We are not going to subject her to B-12 shots.”  Or “No.  We are not going to take her for another hyperbaric chamber treatment.”  There have been a number of things, that in my desperation to be a “great Mom” I would have tried had my wise husband not stopped me.  These are not moments I am proud of.  I have made a lot of mistakes.  This last diet was just one in a long line of bad ideas.  I know I will have more.  I understand it is human nature, but I also will be damned if I’m going to try to gloss over the choices I made that hurt Emma.

I promised myself long ago that when I became aware of a mistake, I would try to make immediate amends.  I don’t mean a quick, “Oops, sorry about that.”  I mean an amends.  Which is different from an apology.  An apology is what you say to someone you bump into by mistake on the subway.  An amends is when you seek to change your behavior so that you might at least have the chance of not repeating that mistake.  I try to do that consistently with both Nic and Emma.  I am sad to say, I have had to make a great many amends over the course of their short lives and some I’ve had to say over and over because I just can’t seem to get it right.  So when Emma said to me, “You put it in the basement.  You made me sad.”  I knew what I had to do.  I knew I had to listen to her.  I knew I had to resist the urge to make it better.  I knew I had to be present, no matter how much it might hurt to hear the things she would say, I owed it to her.  I had to give her that, at least, I needed to give her that.

I put my hand on her arm.  ”Tell me, Em.  I promise to listen.”

Emma nodded her head.  ”Never, ever.  You put the toast in the basement.  Mommy no!  Ahhhhh.  Mommy please!”  She pretended to grab at the bread and then she made a muffled screaming noise.  She got up off her bed and twirled her string.  She looked over at me.  ”You made me so sad.  Emma’s crying.”

I nodded.  ”Emma.  I’m so sorry I did that.  I made a terrible mistake.”

Emma looked at me.  She put her hand on her chest and she said the following words that broke my heart.  She said,  ”You have to say you’re sorry to Mommy.”

I thought about all those Autists who talk about their awful childhoods and  how they were made to feel broken, not good enough and that it was somehow their fault for the terrible ways they were treated.   I thought of how those feelings about themselves continue to bleed into their lives today.  I thought about how they felt they needed to apologize for who they were and how so many of them believed these lies and some continue to.

“Oh God, Em!  No.  No.  You did nothing.  It was not your fault. I was wrong.”  I put my hand out to her.  ”I should never have done that.   I am so, so sorry.”

Emma came over to me and sat down.  She put her hand on my shoulder and leaned her head into me and said in a quiet voice, “Mommy says I’m sorry.  No more bread in the basement.”  She paused and then said, “But next time just one?”

“No Emma.  Not one.  Not any.  I will never do that to you again.”

“Not one.  Zero.”  Emma smiled.

“That’s right.  Zero.”

“Not one, not two, not three…”  Emma counted up to one hundred.   When she got to a hundred, she smiled and made a zero shape with her hand.  ”Not one hundred, only zero.”

I smiled.  ”Yes, Em.  Only zero.”

Emma nodded and then she said, “Mommy lie with Emma and read stories.”

“Okay,” I said.  As we snuggled under her blankets together I said, “Who’s the most amazing girl in the whole world?”

“I am,” she said with a smile.

 The Depiction of Autism and Why it Matters on Huffington Post

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iPad Apps, GFCF diets & Shark Teeth

Posted on December 12, 2011 | 4 Comments

I was sent a trial to a new ipad app for children on the spectrum called The Social Express.  If you click on the link it will take you to Social Express Lite which you can try out on your ipad or computer.  The characters are Zack and the aptly named Emma with her dog Sunny.  There are a series of vignettes where your child is encouraged to identify the character’s emotions.  I tried both levels with Emma.  She was amused when she purposely chose the “wrong” emotion and then laughed when the voiceover says – “Hmm,  look at Emma’s face…”  then it says, “Can you try again?”  To which Emma would choose the right one, while saying out loud – “Look!  She’s sad.  She lost her ice cream.”  Em particularly liked the scene with the boy who is terrified of the dog, something Em can relate to, and when the girl mistakenly lets go of her balloon, another situation that has caused Em great upset.

GFCF diet update:  We are officially off the diet, with the naturopath’s approval.  We are trying some other supplements and will continue with Dr. Blank’s literacy program.  Interestingly, because of the GFCF diet, Emma is now so happy to eat a wider variety of foods, she has expanded the foods she’ll try considerably.  As I am reintroducing foods one at a time, I made her a GFCF cream of pumpkin and carrot soup with coconut milk the other night.  She had several spoonfuls of it.  I also prepared scrambled duck eggs, which she had a few bites of it.  She is eating a wider variety of fruits, was ecstatic to have some pancakes for breakfast Saturday morning, even though I made them with duck eggs and rice milk.  During our literacy session, Emma seemed focused and a bit more attentive than I’ve seen in awhile.  Meanwhile the rest of us are so happy to be able to eat regular food again, without the constant worry of whether there are trace amounts of soy, corn or potato.

A couple of nights ago while supervising Emma’s teeth brushing I noticed she has an extra tooth growing in back of her upper incisor.  I showed Richard who commented, “Shark tooth.  She has the mouth of a shark.”

“What a horrible thing to say!  Aren’t you worried?”  I asked.

“No.  She’s going to the dentist Wednesday, he’ll tell us what needs to be done, then I’ll be worried.”

Typical.

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

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The Diet

Posted on December 6, 2011 | 6 Comments

Emma has been on “the diet” for exactly seven weeks and two days now.  Because Emma did not test intolerant for gluten, last Wednesday we introduced gluten back into her diet, but stayed the course with all the other foods she tested an intolerance for.  Here is what we have seen:  nothing.  There has been no significant change since we began this, she has not expanded her choices of foods.  I’m starting to have an increasingly difficult time explaining to myself or to Richard why we are continuing.  Everything I’ve read, including her doctor tells me we should stick with it.  Give it at least another month.  One mother I spoke with told me I should give it at least six months!  So here’s my question – Why?  What could possibly happen in the next four weeks?  The idea that suddenly we are going to see some significant cognitive leap seems highly unlikely.  If one just looks at this practically, how is it possible that a child would show no signs of any improvement, but if we just kept on this diet, suddenly at some point in the foreseeable future the diet would kick in?  Kind of like an engine roaring to life despite having been jump started countless times.

The argument given as a reason to stay on the diet, goes something like this – these children have what’s called a porous intestinal wall also known as – leaky gut.  The leaky gut means foods, particularly foods with gluten and casein, are not properly metabolized or digested.  Some believe these foods become peptides or even opiates, which then leak into the bloodstream causing neurological problems.  So the thinking goes –  the leaky gut needs to heal and can only heal if the child does not continue to consume foods they cannot digest.  The only children I have personally heard about who have been helped by adhering to the GFCF diet, showed significant change very quickly, usually within the first few weeks, but more often within the first few days.  I have yet to hear from anyone who saw nothing, but stuck with it, then months later saw improvement.  If anyone reading this knows of anyone who’s child showed nothing, but much later improved as a result of the GFCF diet, please write me.

If this diet were easy to stay on, didn’t require a massive amount of time and energy, I would stay with it.  But that isn’t the case.  It has taken up hours and hours of time.  I have made batches and batches of gluten free baked goods only to have Emma refuse all of them.  We have thrown enough gluten-free, casein-free products away to feed a small village.  Emma’s diet, instead of expanding has become even more restrictive as a result.  She now seems to exist solely on applesauce, the occasional slice of ham and peeled Fuji apples.  She will eat one particular sheep’s milk cheese that I can only buy at the Farmer’s Market in Union Square on Saturday mornings, but shuns any other.  She will eat one specific brand of goat’s milk yogurt from Whole Foods, but will eat no other.  Because she cannot have many fruits and vegetables, only green, orange or yellow skinned are allowed on this diet, she now will only eat peeled Fuji apples, very occasionally I’ve been able to get her to eat a piece of honeydew.  She loved green grapes, but one week Whole Foods had a batch that tasted differently and now she refuses to eat them, even though they are like the ones she used to like.

When we put Emma on this diet the first time, when she was only two-years old, we saw the same thing happen.  Previously she was still eating scrambled eggs, hot dogs, pizza, grilled cheese sandwiches, pasta with pesto sauce, raisins, a wide variety of nuts, bananas, the list went on.  And while, at the time, I saw her diet as limited, it became much more so on the diet.  When we reintroduced foods after three plus months on it, she didn’t go back to many of those favored foods.  As the years continued, Emma has limited her foods to some half dozen.  She seems impervious to sensations of hunger or fullness.  If I find ten containers of the goat’s milk yogurt that she likes, she will eat all ten if allowed.  The next day, upon seeing there is no more goat’s milk yogurt left (or whatever it is that she’s eaten all of) she appears unconcerned.  She simply doesn’t eat.  There is a complete lack of drama one way or the other.  If it’s there she’ll eat it and if it’s not, she just doesn’t eat.

On a side note, a friend of mine asked, “What’s next?”  That will be the topic of tomorrow’s post.

I am taking Emma to the naturopath/physician this Friday and will report back.

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

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The Missing Survival Instinct

Posted on December 2, 2011 | 4 Comments

This morning Emma asked for “toast with cheese” for breakfast.

“How about toast with almond butter?”

“No toast with almond butter.  Cheese.  Here.”   She thrust a wedge of sheep’s milk cheese at me.

When she was first beginning to speak she would say a phrase, usually not a single word, such as “All done” or something that sounded like, “bye-bye, see you later” and then the next week we would hear a different phrase, but the new words weren’t added to the previous, instead the previous phrase was never heard again.  Like her pickiness with food, she seems only able to tolerate a set number of things.  Out with the almond butter and in with the melted cheese.  I’ll keep pushing her to have the almond butter, but she’s nothing if not determined.

People often remark, when hearing about Emma’s limited food, “Well, she’ll eat if she’s hungry enough.”

While this is true, it isn’t true in the way one would suppose.  Emma will say no to something and if that’s all that’s offered, she’ll wander off, seemingly not concerned.  The idea that she’s really hungry doesn’t seem to cause her much anxiety.  It’s as though Emma doesn’t have the basic survival instincts the rest of us come innately equipped with.  I have since read on a number of websites about other children with autism who simply do not eat if the food they are comfortable with isn’t offered.  Emma will eat whatever it is once, but then not again.

When Emma was a baby she appeared utterly unconcerned when one of us would leave the room.   If we were at the playground she would wander off, never looking back to see where we were.  It was as though the thought that she actually depended on us for survival was not programmed in.  Even before she could walk, she seemed unable to comprehend that she needed us to take care of her.  She behaved as though she were a fully grown, perfectly capable and independent adult.  It was like that with all kinds of things.  She would dash into the raging surf at the beach, as though she were a seasoned swimmer, before she knew how to swim.  There were numerous occasions when Richard or I would glance up and see her disappearing into the ocean, her blonde curls floating on the water’s surface, waves crashing around her and Emma oblivious to any danger, barely able to keep her head up, laughing.  It was with this same insouciance that she left our hotel room one night at around 2AM when she was three, only to be found 30 minutes later wandering the halls of an enormous hotel we were staying in for a weekend get-away.  All of us were terrified and I still remember that feeling of dread, as though I might throw up, when we still hadn’t found her after the first ten minutes.  The hotel was like something out of a Stephen King novel, old and creepy, with cliffs on one side dropping into an ice covered lake.  The panic was all encompassing; it was as though my mind and body had separated from one another, a sensation almost every parent of a child with autism has experienced.

Last night I gave Emma a small bowl of my “Thanksgiving Soup”.  She whimpered when she saw it, then dutifully tasted it, before putting the spoon down and saying, “It’s all done now.”

When I offered her another spoonful she took it, but as she held the broth in her mouth, she began to gag.

Joe who was standing nearby said, “She can take a huge spoonful of cod liver oil with no problem, but not your soup.”

Yup.  That’s our girl.

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

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Cheerios

Posted on December 1, 2011 | Leave a comment

Yesterday morning I asked Emma if she’d like to have some Cheerios for breakfast.

“Yes!  Cheerios!” she shouted.

I poured some into a bowl and then gave them to her with vanilla unsweetened rice milk.  She hesitated before digging in.  ”I like Cheerios,” she announced.  ”Cheerios for dinner?”

“No Em.  We’re not going to start having Cheerios for every meal again.”

“Just for breakfast,” Emma said, nodding her head up and down.

When I came into the kitchen this morning, Emma had placed the box of cheerios with a half gallon container of regular organic cow’s milk on the kitchen counter next to a bowl and spoon.  ”Oh no, Em.  You can’t have this milk.  You can have your Cheerios with this one.”  I handed her the rice milk.

“I don’t like that one.”  She turned away and said, “No more Cheerios.  Have toast with cheese in the bakery instead.”

“In the bakery” is what Emma says when she wants something heated up in the oven.  When she first said it last summer while we were in Aspen, we were all confused.  I even took her to a restaurant in town called – Main Street Bakery.  Eventually we figured it out – she wanted to have two slices of bread, lathered with butter, put on a cookie sheet and then baked in the oven.  She likes to sit on the floor next to the oven door, periodically peering through the window into the oven until it’s done.

But this time she added that she wanted cheese, which was a first.

“Here Em, which cheese do you want?”  Barely able to contain my excitement that she was asking for something different, I showed her the three different kinds of sheep’s milk cheese and one goat’s milk cheese so she could choose.

“This one!”

“You wore her down,” Richard said.  ”What happened to the Cheerios?”

“She doesn’t like the rice milk, so she won’t eat them.  Anyway, I noticed they have corn starch and she shouldn’t have anything with corn.”

Richard nodded his head and kept walking.  Richard has never been a huge proponent of this second round on the GFCF diet.  His feeling is – we tried it when she was two with no change, why would it do anything now?  But being the kind, supportive and generally awesome guy that he is, he has gone along with it.

I know none of this makes any real sense.  Emma has shown no significant uptick from taking all these various foods away and it’s been almost seven weeks.  But still I hold out hope, against all reason, against all evidence, against anything rational.  If I’m being honest, I have always wondered whether I didn’t do the GFCF diet right the first time around.  Maybe I wasn’t strict enough, maybe there was a food that she shouldn’t have had that I didn’t know about.  One can drive oneself crazy with this kind of thinking.  I know.  My husband knows.  Definition of crazy:  Doing the same thing over and over again and expecting a different result.  So yes, I get it.  But, for what it’s worth, here’s my (crazy) thinking – she didn’t test intolerant for gluten, so we’re putting it back in, but staying away from all the things she did test an intolerance for just in case some of those might be causing her problems.   I cannot imagine there will be any change, though.  Hope doesn’t rest on rational thinking however.  At this point I’ve downgraded my expectations to the idea that she’ll expand her diet.  It would be so nice to go out occasionally to a restaurant as a family.

It would also be so nice to have a personal chef – and that wish hasn’t transpired either.

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

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Literacy, Diets, Progress

Posted on November 18, 2011 | 5 Comments

Dr. Marion Blank has written a terrific piece for the Huffington Post regarding the 60 minutes segment on APPs for autism and the current ways in which language is taught.  For anyone with even a passing interest in language or autism, I encourage the reading of it.

An update on Emma, her diet, her progress:

Emma ate about three tablespoons of chicken and brown rice two nights ago and tasted the pumpkin mousse I made.  I will attempt to make coconut milk whipped cream this evening in preparation for our Thanksgiving feast.  I want to have several things Emma might like, so I am planning to prepare Maple Syrup glazed Turkey, roasted carrots and sweet potatoes and some kind of desert she might enjoy (she didn’t love the pumpkin mousse or pumpkin scones, so I’ll try some other recipes) as well as things the rest of us will enjoy – we are having between 12 – 15 people, many of whom are bringing things!  I am thinking of writing a cookbook entitled All The Delicious Things I’ve Made That Emma Won’t Eat.

I worried the other day (someone pointed out that I am always worrying about something – I blame my mother for this – she is a known worrier, plus I’m a New Yorker so there’s no hope for me) that Emma is just as rigid now as she was before the diet.  Instead of only eating six things, all of which were dairy or wheat, she now eats six other things, but as Richard pointed out, at least they aren’t dairy and wheat.  I think my expectations were high (they tend to be) when we began the diet; I had read in many cases the child, once off dairy and wheat, expanded their diet dramatically.  Don’t get me wrong, it is wonderful to see Emma eating brown rice and roasted chicken.  In fact it’s a huge achievement on her part.  I’m taking a deep breath now and will bask in the glow of brown rice and chicken.

Okay.  Now that I am filled with gratitude, to continue -

To date we have seen no identifiable cognitive or behavioral progress as a result of this diet.  We see her doctor in another three weeks.  I am still hopeful we might see something by then.

We received a report from her school that Emma threw a chair across the room on at least two occasions and pulled one of the TAs hair.  Obviously this is not good news.

Another deep breath, focusing on the joys of brown rice and roasted chicken.

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

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The Diet

Posted on November 14, 2011 | 6 Comments

It’s been a month.  Last Monday I wrote that it had been four weeks and two days, I was wrong.  It just felt like it had been a month.

One month ago, on October 16th we began Emma on a GF/(modified) CF/ soy free and a great many other free diet.  This is our second go around with this diet.  The GFCF diet was the first thing I did when Emma was still two years old, to no noticeable change.  However, that first time she began eating a great deal of soy – soy yogurt being her favorite.  I was working with a DAN doctor at the time who tested her for hundreds of foods but never said anything about all the soy she was eating.  So after three months we took her off the diet and again saw no change.  This time I’m working with a naturepath/physician who also tested her for hundreds of foods.  This time, the list of foods to avoid was much longer than the first: cocoa, corn, potatoes, chicken egg whites, all red skinned fruits and vegetables, bananas, peanuts, onions and garlic.   Emma did not test negatively for wheat, but he advised we take her off it anyway, just to be safe.  Oddly, she also didn’t test negatively for sheep and goat’s milk, so we’ve allowed her to have sheep’s milk cheese, sheep’s milk yogurt and duck eggs.

Still we have witnessed very little change in Emma.  We’ve grown used to this.

I keep thinking I’m going to find something, something that other families have tried with significant results, but so far, other than Emma’s literacy program, we have not.  It’s frustrating to try various things and see little, if any, change.  As I’ve written before, we think we are seeing an increase in physical affection, but it’s hard to say this with certainty.  We have definitely not seen a profound change of any kind causing us to feel without a doubt that this diet has done anything.  Still I will give it more time.

Why some of these interventions work for some children and not others is something that’s been debated for awhile.  Why is it some children are mainstreamed after a few years of intensive 40 hour a week ABA, yet for children like Emma, they were not helped?  How is it that some children go on a GFCF diet and within days are transformed from a screaming, frustrated, incoherent child to one who is speaking in full sentences, playing with toys in an “appropriate” manner and displaying a never before seen curiosity of those around them?

It is easy to blame oneself, but I don’t believe that is the answer.  I know of too many cases where the parent has tried a great many things only to find their child did not respond.  I wonder whether it is the children who do respond, who are the exception.  While this thought depresses me, I have to wonder whether it isn’t more accurate.

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

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Preventative Measures

Posted on November 10, 2011 | 1 Comment

The New York Times published a piece in August of this year about the role the environment plays in the rise of autism.  It begins with the question asked by many people who are hoping to become parents  - What can we do to decrease the risk?

I have often thought about what I would have done differently, knowing what I now know.  There are a number of things, things I didn’t know to do or not do when I was pregnant with Emma.  There are a few things that appear to have some scientific basis to them, such as taking prenatal vitamins at least three months before getting pregnant and continuing to take them for the duration of the pregnancy.  I began taking them when I learned I was pregnant with Nic, though interestingly, with Emma I was taking them before I became pregnant with her and continued throughout the duration of my pregnancy.  I would not have eaten any fish of any kind during any part of my pregnancy.  I ate grilled swordfish a couple of times in my second trimester with Emma.  I also used fingernail polish remover a couple of times and had my hair highlighted once during my third trimester.   I would have stopped using all artificial sweeteners and I would have been more careful after the 9/11 attacks by not going downtown to Richard’s office in Soho to work.  Beyond those incidences, I did not take any drugs of any kind, not even aspirin, I didn’t consume caffeine or alcohol, I did not have an amniocentesis, avoided all and any invasive procedures, had two sonograms and gave birth naturally in a birthing center.  It seems unlikely that anything I did while pregnant contributed to her autism, but who knows?

After giving birth I would have done a number of things differently.  From the moment she took her first breath I would have eliminated all onion, garlic, dairy and wheat from my diet while I was breast feeding.  During those first few months when she was so uncomfortable and “colicky” I would have kept a food journal to see if there were other foods I was consuming that upset her and then eliminated those.  Since Emma seemed so uncomfortable when I breast fed and much preferred drinking breast milk from the bottle, I would have tried different techniques in swaddling her or having some sort of soft cloth between us so our skin to skin contact wasn’t so uncomfortable for her.  I would have started brushing therapy (click link for more detailed information on brushing) with joint compressions (see link for a detailed description of joint compression exercises) during this period as well.

Then there are the things I wish I had done much sooner such as  Dr. Marion Blank‘s literacy program instead of all those hours spent doing ABA.  I wish I had discouraged Emma from sucking her thumb.  I would not have introduced corn, soy, wheat, dairy or any foods that are thought to be problematic for some children.  I would have obtained an evaluation much sooner as well as taken her to a neurologist and had an MRI done before she was 18 months old.

Had I done all of those things, would any of it made a difference?  Except for introducing Dr. Blank’s program right away, which I am convinced would have made an enormous difference, who knows?  How much of a role does the environment play?  How much is due to genetics?  I have questions, lots of questions.  None of which will likely be answered any time soon.

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

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Posted in Alternative Therapies, Autism, diets, Parenting

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Three Weeks and Two Days

Posted on November 8, 2011 | Leave a comment

Today marks exactly three weeks and two days since Emma began the modified gluten free/casein free/soy free/potato free/corn free/peanut free/banana free/chocolate free/cocoa free/red, blue, purple skinned fruit & vegetable free diet.  (Breathe.  I think I may have left some things out, but I can’t remember now.)

Last night she ate a tiny piece of catfish and coconut rice.  I soaked the catfish fillets in beaten quail eggs and almond milk, then drenched them in a mixture of coconut flour, quinoa flour & oat flour with some salt, before sauteing in ghee.  The coconut rice has become my new favorite dish.  Instead of cooking the rice in water I use coconut milk, making it creamy with a slightly nutty flavor.  However Emma is not quite as enthusiastic by my culinary inventiveness as the rest of the family.  Still, she did eat some and then was allowed to eat her new mainstay – green grapes and honeydew melon.  Except that when I offered her a few pieces of honeydew melon this morning she began to scream as though I’d amputated a limb.  As I’ve said before, she’s one tough customer.

In addition to all of this, ideally she should be on a rotation diet, meaning no food is to be repeated for at least four days.  (Laugh hysterically.  Then try to calm down and remember to breathe.)  Um.  Right.

“So how’s the rotation diet part going?”

“Not so much.”

That short dialogue sums it up.

As far as any changes we’ve witnessed – we think we may see an uptick in her desire for physical affection.  It’s hard to say this definitively, but we have all been getting more spontaneous hugs and kisses it seems.  I think her eye contact is better, again, it’s a subtle shift, if at all.  She has become more perseverative, so on the advice of her doctor we’ve reduced the Malvin, Piperine and one other, whose name eludes me at the moment, drops back to two daily instead of three.  I cannot tell if her chronic constipation is better as I have no way of knowing what she does, if anything, at school.  She does not seem particularly uncomfortable, but then she rarely does.  Emma also takes a magnesium supplement, Taurine, one drop of dopamine, several multi-vitamins as well as cod liver oil, which bizarrely, she actually seems to like.

And, because of this diet I now have become versed in such unlikely ingredients as – Guar Gum, (used as a thickener in place of cornstarch, it comes from the Guar or cluster plant grown in northern India and Pakistan.  The seeds are hulled and ground into flour)  Xanthum Gum, (also used in many gluten free recipes as a thickener and to add volume to baked goods.  It is derived from corn.  However, because it is derived from corn sugars and during the process, all corn sugars are removed, it should be okay for Emma.  This is according to her doctor.  I did find a corn free xanthum gum from Namastefoods.com, just to be safe.)  Arrowroot, (used as a thickener, found in South America, got it’s name from being used to treat wounds from a poisoned arrow.)  How’s that for a bit of trivia?

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

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