Tag Archives: autism and diets

Day 4

Today begins day 4.  It appears that Emma has a cold – red sore throat, cough, runny nose, slight fever in the morning.  I do not believe her cold has anything to do with going on this new diet.  We began various tinctures last night as well as omega supplements & cod liver oil.  Amazingly she took all of these things with little protest, even swallowed two capsules.  Her spirits are good and while she still isn’t eating much, she is active and cheerful.  As I write this she is singing and doing a dance in the living room.

Last night I took a break and met a friend for a few hours. Just as I was leaving Emma became extremely upset because her carousel book was missing and she couldn’t find it.  Richard pushed me out the door.  “I got this honey.  Go.”

Later Richard texted me this photo.

Evidently Emma came over to Richard and asked if she could play with her math blocks.  (The following conversation is one that Richard texted to me.) “Emma, do you want to play with your pattern blocks or look for your carousel book?”

“Play with pattern box!”

As she played, making patterns, adding and subtracting and making equations, Richard found her much coveted Carousel Book.  He proudly held it up to show her and she barely glanced at it, so absorbed in her math.

“Emma, it’s the carousel book!  I found it!”  Richard was so pleased with himself he could barely stand it, but Emma continued playing with the blocks.  Not one easily deterred, he said, “Emma!  Do you want to read the book or keep playing with the blocks?”

“Keep playing with the blocks.”

“Okay, Emma.  I’ll put it in your bedroom okay?”  He headed to her bedroom.

“Okay.”

Richard turned and said, “Aren’t you going to say thank you Daddy for finding your book?”

“Thank you Daddy.”  Upon which she returned to playing with the blocks for awhile and then very neatly packed them all up in their box again.

When I arrived home Richard told me that when it was time for her to go to sleep, he asked if Emma wanted him to read to her.  But she told him she wanted him to turn off the lights.  Richard asked her if she wanted him to leave or stay with her.  She asked him to stay with her.  Then she snuggled down under the covers and said, “Lie with me.”

This was the first time Emma has asked Richard to stay with her while she fell asleep.

And stay he did.

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

Day 3

I didn’t have time yesterday to go into Emma’s response to being told she could no longer have her usual breakfast of the past six years – cheerios with milk and 2 slices of whole wheat toast with butter and raspberry jam or her weekend breakfast of pancakes (mix from William’s & Sonoma) with chocolate chips.  Did I mention she cannot eat chocolate?

I had the foresight to put everything that she can no longer eat into bags, which I then hid or, if it was perishable, threw away.  Except that I forgot about her whole wheat bread.  Sunday morning – Day 1 – there it sat on the kitchen counter like a beacon calling lost ships to shore.  She figured out pretty quickly that things were not going to be “breakfast as usual” and went for the bread before I could grab it or her.  I then had to wrestle her to the ground, as she screamed and tore at my clothing like a rabid beast.  It’s tough to maintain ones composure in such circumstances.  When she realized I intended to throw the bread away, she screamed and clawed at it, eventually crumpling into a heap on the floor, sobbing.  “Nooooooooooo!  Please Mommy.  I want toast with raspberry jam!”

I offered her the granola, then some oatmeal, all of which she refused and finally sat with her as she wept.  I tried to hold her, but she pushed me away.  I know not to take Emma’s rejection of me personally, it’s one of the many things about her autism that has always baffled.  She has never derived any comfort or pleasure from being physically soothed when she was upset.  As a baby it seemed as though she were missing that most basic human instinct, seeking contact from another human being.  It was as though self preservation was not part of her makeup.

Yesterday there was no weeping, but she had a fever and runny nose.

“Classic junkie symptoms,” a recovered addict I know informed me, after I told him what we were doing.

“What do you mean?”

“When I was a junkie, I told my dealer, heroin was great for curing the common cold.  She laughed at me and said – no you idiot.  You’re jonesing.  That was my moment of realization.  I was hooked and I hadn’t known it until then.”

“So what are you saying?  You think this fever is withdrawal?”  I sat down, incredulous.

“Maybe.  Hey I’m just thinking out loud.  What do I know?”

Still his words have stuck with me.  Maybe it’s just a coincidence.  Maybe she has a cold.  Her throat is red and I don’t see how that can be from any kind of withdrawal.  Still it’s weird.  This morning she had a fever again and her “cold” or whatever this is doesn’t seem to be better.

She continues to refuse almost everything offered.  Making whimpering noises whenever I ask her to sit at the dining room table to eat with us.  Today she finally had a slice of ham, some green grapes and some sheep’s milk cheese.  It’s the most she’s eaten in two days!

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

Day 2

Last Friday, I took Emma to see a doctor who has seen over a thousand children with autism and is also a Natureopath.

“What the hell is a natureopath?” My husband, Richard, asked when I told him.

“I’m hoping he can help me with getting Emma to eat different things.  It’s more of a holistic approach, he uses homeopathy and things like that.”

“Circle gets the square,” Richard muttered.

“What?”

“You have no idea what you’re talking about, do you?”

“Yeah, okay.  I don’t know exactly what a natureopath is, but he’s worked with a number of children on the spectrum and I need help getting her to eat more than just a miniscule amount of something.  Also, I don’t know that what I’m giving her is any better than what she was eating before.”

Later, I looked up Natureopath and this doctor in particular and came across this quote from his web site:  “…practice focuses on autistic spectral disorders with special emphasis on chronic immune dysfunction, including allergies, asthma, recurrent or persistent infections and other genetic or acquired immune problems.  He uses diet, nutrients, herbs, homeopathy and immunotherapy to help his children achieve better health.”

On Friday afternoon we went to see the doctor.  Upon our arrival I went over Emma’s history and discussed all the other doctors and various therapies we’ve tried.  We were there for a very long time.

As I spoke, Emma leapt about the room, racing from one chair to the next.  At one point she ran over to the doctor and ran her fingers through his hair.

“Hair!” Emma intoned as though discovering the contents of King Tut’s tomb.

I glanced at the doctor with an apologetic smile.  He seemed at ease and continued making notes.

“You like my hair?”  He asked, while I said a silent prayer that she would say yes and not any number of inappropriate remarks she was just as likely to utter.

“Yeah!”  She said before jumping into yet another chair.

Eventually he had Emma sit opposite him and handed her a copper bar which she grasped in her right hand while he ran another device along the inside of a finger on her left hand.  In this way he tested Emma for over 200 different foods.  Every single food she currently eats was a food that showed up on the “Avoid” list.  But since she only eats about six things, the list was actually not that long.  Each time the machine made a weird beep, signifying a food she couldn’t eat, I groaned.

“Corn,” he said.

“Not a problem.  She doesn’t eat corn.”

To which he replied, “That means anything that has any form of corn – corn syrup, corn starch, corn’s in almost every processed food.”

By the time the testing was finished I was left with a list of “Must avoid” foods ranging from egg whites (from a chicken), corn (and any food with anything derived from corn), potatoes (and all foods containing anything derived from potatoes), all night shade vegetables, any dairy coming from a cow, all soy products, all red skinned fruits and vegetables and of course, wheat.  The only thing NOT on the list that Emma enjoys is maple syrup, raw cane sugar and honey.  I was told we could expect to see some “significant change” within a month.

I’m up for pretty much any challenge given to me, but I must admit to feeling a certain degree of anxiety as I left his office and began thinking about how I was going to implement this list.

“Cold turkey,” he advised.  “Otherwise it’s like ripping off a bandaid very, very slowly.

When he said that, I thought immediately of Nic who much prefers the slow peeling off of a bandaid than the – here-let-me-rip-it-off-for-you approach.

I spent most of Saturday scouring New York City for foods she can eat.  Specifically flours to make a non gluten bread and duck eggs, since Emma can’t eat the whites of chicken eggs.  Duck eggs are a great deal harder to find than one might think.  I finally gave up and have ordered a dozen from a woman in Michigan, who told me all about her ducks, how the older ones aren’t laying much any longer, the eggs she’s sending me are from one year olds and so the eggs might be missing yolks, etc.  She also told me she will send them to me with the dirt “brushed” off, but not clean the way one expects to see eggs in the grocery store.  Having grown up with a brother who had (for a number of years) about 24 hens and a single fierce rooster, he named Digby, I’m not particular about the dirt on my eggs.

“It’s okay, she won’t be eating the shells,” I reassured her.

The woman laughed.  “I’m just warning you.  Duck eggs are much dirtier than other eggs.”

Who knew?  I’m glad for the warning.

Yesterday, Sunday was Day 1.  It was tough.  Emma was not pleased and though I tried to explain to her that she was going to feel much better when she began eating foods that were better for her, she remained unconvinced.  However, she did end up eating a slice of ham, a tiny, imperceptible “taste” of lamb burger as well as a tiny bite of carrot, which she promptly spit out accompanied by “yeach!”  The granola I made, remained untouched, though everyone else in the family thought it amazing.  Nic had a friend over Friday afternoon who brought his 5 year old sister.  All of them sat at the dining room table happily munching on the granola and even asked for seconds, while Emma stared morosely at her serving and refused to eat more than a tiny piece of a dried apricot.

Ariane’s Granola

Preheat Oven to 325°

1 Cup Organic Oats, ½ C. unsweetened shredded coconut, ½ C. unsweetened coconut flakes or chips, ½ C. pumpkin seeds, ½ C. sunflower seeds, ½ C. chopped walnuts, ½ C. pecans (or sliced almonds)

Heat together and then pour ½ C. maple syrup, ¼ C. honey & 1 teaspoon Vanilla extract onto dry mixture.  Mix with wooden spoon until everything is coated.  May need to add a little more honey or maple syrup.

Line a cookie sheet with parchment paper, spread granola in a layer.  Bake in oven for 30 minutes, stirring every 10 minutes to make sure it is uniformly brown.

Add 1 Cup chopped dried fruit.  I used dried apricots and yellow raisins, but any dried fruit would work.  Mix into granola after it’s cooled for 10 minutes or so.

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

Emma and Food

I’ve written about this before – Emma’s limited diet.  It’s self-imposed.   As her parent and someone who struggled with an eating disorder for 22 years, I have been reluctant to get too involved in her food other than to make a few half-hearted attempts to offer her other foods I thought she might like.  By the way, Nic, her older brother eats a wide range of foods, even eating a curried rice with cauliflower and chickpeas dish I made the other night, without complaint.  (He was being a good sport, I know.)

When we first received Emma’s diagnosis I immediately put her on a gluten free/casein free diet as so many families found it helped their child.  Some even found their child lost their diagnosis after going on it.   We had her on the diet for more than three months and saw her lose 10% of her body weight with no other noticeable change.  At the time we were working with a DAN (Defeat Autism Now) doctor, who specialized in allergies and nutrition.  During that time she became even pickier about what she’d eat and by the time we took her off of the diet, she was eating soy yogurt and scrambled eggs, shunning “good” foods she once ate, such as vegetables, chicken or fish.  Years later someone told me that soy is another food to be avoided and that may have been the reason we saw no change.  All these years later, I still wonder whether we did the diet wrong, if we’d removed all soy products, perhaps we would have seen some significant change.

A friend of mine suggested the GAPS diet, created by Dr. Natasha Campbell-McBride who “fully recovered” her own child with her diet.  The problem is, there isn’t a single thing allowed on this diet that Emma currently eats.  In addition it is a labor intensive diet, requiring one to make homemade condiments – such as mayonnaise, ketchup, etc as well as yogurt.  BUT – I am still willing to look into it and have purchased the book describing the diet as well as the cookbook with various recipes.  (Richard is groaning as he reads this as he no doubt is remembering the fanaticism with which I tackled the GFCF diet.)

Before I even contemplate starting the GAPS diet, I will take her to a new pediatrician who is said to be versed in autism and am trying to encourage her to try some new foods.  I intend to document our progress and (hopefully) hers on this blog.

Last night I introduced Emma to a piece of Comice pear, peeled.

She was tentative, but eventually after smelling it, licking it and touching it, she finally ate it!

This morning I gave her a small bite of a Fuji apple, which she immediately picked up and ate without hesitation.  Tonight I will go out on a limb and try a raspberry.

Emma on her way to the school bus this morning.

If anyone reading this has had success with any sort of diet, please contact me with what you tried and any progress you saw in your child.

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

Yes, but… – Autism

A blog follower recently contacted me saying how exciting it is to see how much Emma is progressing.   Whenever someone says this to me, my first reaction is surprise, followed by a shot of hopefulness and finally curiosity.  What exactly do they see?  How is she progressing in their opinion?  So I almost always ask, “In what ways do you see her progressing?”

I then listen intently, making a mental note of the various things.  And then, and I’ve noticed this happens almost every time, I think – Yes, but _________ .  Here is the current list of my “Yes, buts…”

Yes, but she still sucks her thumb and as a result the shape of her mouth has changed, resulting in her front top and bottom teeth no longer meeting because of her massive over bite.  (This thought usually leads to a whole laundry list of anticipated horrors about dentistry, orthodontistry, the worry of how we will have to have her hospitalized to have braces put on – this is what we had to do when she had a cavity) and the exorbitant cost of  all of this.  I become acutely aware of how fast my heart seems to be beating.  Suddenly I am nauseous, can’t eat and wander around feeling ill.  Which leads me to my next – Yes, but:

Yes, but she only eats a half dozen things, all of which are either dairy or wheat and though we put her on a wheat free/ dairy free diet when she was first diagnosed to zero effect, maybe we did it wrong.  A vegetable has not touched her lips in more than six years.  Maybe we missed something.  Maybe there’s something else here that we should be doing.  I then am led to Google and several hours later I emerge from the black hole that only Google can provide, having learned about the dozens of diets all with the ominous warning that early intervention is key.  Which, to my mind, means we’ve missed the boat as she is now at the ripe old age of nine and a half.  If I’m feeling really panicked – almost ten!

Last night I mentioned to Richard my current litany of – yes, buts.

“You’re spiraling off again,” he observed, after I’d finished.  Then he looked at me with an expression of concern.  He sighed and said, “I know, honey.”

I understand that my thoughts, shooting off to the next catastrophe, are my convoluted way of protecting myself.  However that “protection”, all those, “Yes, buts” are what block me from fully enjoying Emma’s amazing accomplishments.

Yes, but…

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

Food

As Emma began to regress, starting at around 13 months old, it was not just what I believed to be typically “autistic” behaviors – lack of eye contact, delayed speech, obsessive-compulsive behavior, rigidity – that regressed, but things I didn’t expect, such as the restriction of  foods.  Slowly, just as her speech began to disappear, so did her ability to try new foods and after a few years, a paring down of foods that were a staple to her diet fell away as well.

The following is a list of the foods Emma will eat.  Anything else she refuses.

Cheerios

Mango Fruit Leathers

Red Grapes

Bananas

Apples

Wheat toast with Organic Raspberry Jam (must be the red labeled wheat toast from Whole Foods & The Organic Raspberry Jam from Whole Foods)

Horizon Vanilla Milk – occasionally she will drink the Horizon Chocolate Milk

Stonyfield Chocolate Yogurt (She use to eat the caramel yogurt as well, but they discontinued it.)

Motts Apple Juice (this was an issue in Costa Rica as they had a different brand and she refused to drink it, though eventually did, cut with water)

Pirate Booty

Baby Bel Cheese

Grated Cheddar Cheese – must be orange

Pancakes

Maple Syrup

Chips Ahoy (she will not eat any other kind of cookie)

As a baby Emma was a healthy eater and tried just about anything I put in front of her.  At 9 months she ate a mushroom-barley soup I made.  I recorded this milestone in her baby book.

Many people believe that autistic children are unable to process gluten and dairy, others believe that their child has food intolerances which adversely effect their behavior and some believe that a gluten free/casein free diet has cured their child of autism.  While I have never met a cured autistic child or personally know anyone who has, I do know of one child who clearly functions better without dairy in their diet and a number of autistic children who are allergic to a variety of foods.

In October of 2004, we began working with a DAN (acronym for Defeat Autism Now) doctor who was also a pediatric nutritionist/allergist.  We removed all dairy and wheat from Emma’s diet.  At that point she was eating a limited, but varied amount of foods such as scrambled eggs with cheese, a wide variety of fruits, all flavors of yogurt, ham, turkey, chicken, dried fruits, carrots, etc.  In retrospect her diet seemed limitless in comparison to what she whittled it down to.

Once on the gluten free/casein free diet she refused to eat any new foods to substitute for the old.  I stayed up, often until after midnight, baking wheat-free breads made from rice flour, almond flour, and almond butter.  I found web sites that specialized in casein free/gluten free products and recipes.  I developed a way to make my own organic pureed fruit leathers, which I spread onto baking sheets and dried in a low heated oven for 10 hours or over night.  To celebrate her third birthday I made an entire menu of gluten free/casein free foods.  Emma would not touch any of it.  Even refusing the birthday cake I made, which everyone else seemed to like, including Nic.  Though he confided in me later that he didn’t like it as much as a ‘normal’ cake, but didn’t want to hurt my feelings.

After three and a half months and no change in her behavior, other than a 10% loss of body weight, we took her off the diet and slowly introduced her old foods that she once loved.  Only now she refused to eat most of the old “fail-proof” foods too.  It was as though she never liked them to begin with.  The DAN doctor advised us to introduce one food we knew she liked – we chose cheddar cheese – and to give her a great deal of it and then wait to see if we saw a discernable change.  I gave her several ounces of cheese, which she ate and then waited to see what would happen.  After several days and no change, the nutritionist advised us to introduce yet another food.  We repeated this exercise over and over again.

Occasionally now Emma will take a ‘bite’ of some other food – say grilled chicken – with great reluctance and protest.  I remember a friend telling me about her sister who refused to eat any foods that were not “white”.  I was horrified by the story and remember thinking I would never have a child like that, as I prided myself in being an excellent cook and would never tolerate that sort of “behavior.”  I have since come around to the pick-your-battles way of thinking.  The food battle is one I am just not willing to engage in any longer.

Late at night when I am caught in a cycle of worries, I console myself with the idea that there are certain indigenous populations that survive quite well on extremely limited foods, such as a group of Eskimos who survive on whale blubber and little else.  For now that consolation will have to do.