Tag Archives: picky eaters

Pizza and the Art of a Low Key Response

Emma ate a slice of pizza last night.

That sentence required some space.  It needed to be written by itself with nothing else.  For most of you, this may seem like an excuse-me-while-I-yawn moment.  But for us, it was a DID-YOU-SEE-THAT-STOP-THE-CONVERSATION-EMMA-IS-EATING-PIZZA-FOR-THE-FIRST-TIME-SINCE-SHE-WAS-FOUR-YEARS-OLD moment.  Please excuse me while I dance a little jig,  do a little arm twirling while yelling woo-hoo, spin around, do a few jumps up and down and shout as loud as I can, “Oh yeah!  Oh yeah!”  And, I don’t know, this might be totally overdoing it, but what the hell, a fist bump, just for good measure.

Emma ate a slice of pizza last night.

While other parents are counting the years when they will no longer be required to sit down to one more meal in a pizza parlor, or wonder how they’re going to fit four large, now empty, cardboard boxes into their trash bin, we are rejoicing.  This is HUGE.  We had dinner with friends who have two boys about the same age as Nic and Emma.  And there was pizza.  And then suddenly there was Emma happily digging in as though this was a food she eats all the time.  As though nothing extraordinary was going on at all.  As though sitting at the dinner table with a group of other kids eating what they were eating happens all the time.  I will end this now, because really there’s nothing more I can say.

I was planning to write a whole post about comments and commenting, but I’ll have to save that for tomorrow.  This was just too good to pass up.  Joe said, “Did you take a photo?”  But I was so excited, I forgot, so you’ll just have to trust me.

Emma ate a slice of pizza.

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

Crocuses, New York City Firemen and Emma

As Richard and I revel in Emma’s affectionate embrace, New York City is experiencing an extraordinarily, early spring.  Purple, yellow and white crocuses are peeking out from mounds of dirt in great bursts of color.

This weekend the weather hovered around 60 degrees, today it’s suppose to go up into the 70’s.  The firemen, always good indicators of the temperature outside, across the street from our loft, are wearing shorts.  People are smiling, daylight savings time is in effect and this morning Emma was still asleep when Nic and I left the house.  Short of pinching myself to make sure this isn’t all a dream, as we waited for Nic’s bus to arrive, I couldn’t help but wonder – What’s going on around here?!

In addition to Richard’s beautiful post from yesterday, Emma is making progress in countless ways.  So I’d like to take a moment here to take stock, a kind of inventory gathering of this past year, to highlight how far Emma has come.

One year ago, Emma was struggling with forming the letters of the alphabet.  (I’m not kidding, I just went back and looked at my old notes.)  Today Emma is reading at a first grade level or higher.  In addition, Emma is writing and typing full sentences in answer to questions posed.  Emma knows more than 200 words by sight, she understands punctuation and uses a period, question mark and comma appropriately.  Emma knows to use an upper case letter when beginning a sentence both when writing by hand and when typing.  Emma is learning to use the past, present and future tenses when speaking, writing and typing.  Emma has made a massive leap forward in her use of the correct pronouns.  In addition (no pun intended) she is able to write simple math sentences, adds and subtracts 1, 2 & 3 up to the number 30.  Emma loves doing mazes and connect the dot pictures.  Emma continues to enjoy favorite picture books, but is now reading them herself!  She is no longer simply flipping through the pages, but is actually pointing to the words and READING!  I know, I just said that, but I find this really, very, very exciting.

Emma’s greatest deficit is in her expressive language, but we have been working on that through Dr. Blank’s “Step into Stories” program and through a number of other exercises and work we are doing with her.  Emma is working with Joe after school for a solid two hours and is able to attend during that entire time, with just a few two to three minute breaks throughout.

For the past three weekends, we have taken both children out to brunch at a different restaurant each time and Emma has sat and eaten food from the menu.  Any idea how exciting that is?   We live in New York City, after all.  People here eat out more than they do in, but for us, it’s exhilarating.  She sits in her chair, waits for the meal to arrive, engages with us, and enjoys herself.  Eating out together as a family was not something we have, up until now, been able to do.  One year ago we were having to pack a separate suitcase with the foods Emma would eat whenever we traveled.  Going out as a family to a restaurant was not something we even considered doing.  Emma has slowly expanded what she will eat.  This past Sunday Emma ordered apple juice and made no fuss when it arrived in a tall glass with a straw.  A year ago, not only would she not have ordered apple juice that she was unfamiliar with, but had one of us ordered it, she would have refused to even take a sip without a great deal of protest.  This is the same child who would spend an entire day refusing to drink or eat anything, if it was not familiar and known to her.

In gymnastics Emma is beginning to be able to perform a cartwheel that actually resembles a cartwheel.  She is able to do a hand stand, does jumping jacks on the trampoline and has learned how to touch her toes during the stretching period.  I know, all of this sounds pretty rudimentary,  but for Emma these are monumental leaps forward.

As Richard so eloquently wrote, Emma spent Sunday walking with us, not running ahead, there were no grunting or squealing noises, no sudden bursts of arm waving while jumping about, just walking, arm in arm, sometimes reaching for one of our hands, sometimes stopping to give one of us a hug.  There was a great deal of laughter, playing and interacting while Richard and I floated along on a cloud of joy and gratitude.

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


The Hospital

This was not the post I had intended to write.  This morning at around 2:00AM Emma came into our room, her little body burning up.  She nestled in between Richard and me.  Merlin had curled himself into a tight ball near my head; it is not an exaggeration to say it was a crowded bed.  This is the second time since my surgery that Emma’s been up in the middle of the night.  What was once a nightly occurrence has, thankfully, become a rarity.  By 6:30AM Emma was complaining about the right side of her abdomen hurting.  She became more agitated and upset as the minutes ticked by.  Richard and I realized we had no choice but to take her to the emergency room.

Once there, Emma seemed less upset and after we answered the thirtieth question about her medical history (for a ten year old, it is lengthy and extensive) went over all her various hospitalizations and the doctors we’ve seen, they decided to take an x-ray to determine if constipation was the cause of her pain.  As I stood in the booth with the technician, whose nephew has severe autism and is non-verbal, I could see that constipation was indeed the problem.  Not only was there a single enormous blockage, but her intestines were filled with stool.

Once again we were confronted with the question that has plagued us off and on for the last seven plus years.  How do you help a constipated child, who refuses to eat little if any of the foods that will help her, see the connection?  Or is that not the right question?  When the supervising pediatrician came in to speak with us she gave us the same remedies I have been given by countless other doctors and specialists.  This isn’t rocket science.  It’s pretty basic stuff.  But when you’re dealing with a child who has sensory issues, making it difficult for her to know when she feels the need to go to the toilet, along with fear from past painful experiences, add to that dietary limitations and an insistence on eating a dairy heavy diet, even though it’s gotten much, much better, you have a never-ending cycle that is very, very difficult to break.

“Let us be the bad guys.  We’ll give her an enema, maybe you or her dad could help hold her down,” the supervisor told us.  And as well meaning as she was, as obvious as her suggestion may be, I couldn’t agree to it.  Having Emma held down by three or even four strangers while a bottle of saline solution is pumped into her, while she screams and fights is not going to solve the bigger issue, the issue that we have been dealing with for the last seven years with varying degrees of success – constipation.

“I know,” the doctor said, in response to my despair that we were once again being told the same thing we’ve been told by literally DOZENS of doctors.   “I’m sure it’s very frustrating.”

“Actually frustrating doesn’t begin to cover it,” I said.

And it doesn’t.  Frustration is the beginning of a great many feelings when you are forced to watch your child writhe in pain from something that is so heinous and frightening.  Having just had surgery, having, for the first time had to personally experience the hell that sums up constipation, the pain, the fear, reminding myself to breathe into the pain and relax, I can relate to what Emma is going through in a way I never could have before.  So I did the only thing I know to do.  “Come on Em.  Let’s go to the bathroom, I’ll stay with you, and then afterward we can go home.”

Emma took my hand and together we went into the bathroom where she sat with me crouched in front of her, just as I used to do every single day for so many years.  This time I looked into her eyes and said in a calm, gentle voice, “I’m here with you Emma.  I’m going to stay here with you.  You can do this.”

“I know, it hurts to poop,” Emma cried.

“Yes.  It does.  I know.”

Finally she was able to let go of at least some of the stool inside her and after another 30 minutes, we left and came home.  It’s not over, she’s still massively constipated, shes’ still uncomfortable.  We will have to insist she not eat as much dairy.  We will have to be more diligent about monitoring her.  We have no easy answers.  We have no quick fixes.  But we will get through the rest of the day, just this one day, one day, one step at a time.

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

Literacy, Diets, Progress

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

Three Weeks and Two Days

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

Emma – The Performer

I have a tripod with a hotlight set up for the trunk show I’ve been doing these past two days.  I turn the hot light off whenever possible as it’s so bright and, well, hot.  Even though the weather has turned fall-like, the sun pouring in through the windows facing south, serve to warm the place so much that I am often opening windows to let the cool air in.  But every time Emma is here she turns the light back on.  At first I thought she liked the warmth it generates.  Then I noticed she liked to sit directly in front of it, but far enough away that the heat from the light couldn’t be felt.  She was sitting in a spot light.  The kind of bright theatrical lighting one sees shining on a diva singing an aria.  You can tell where I’m going with this.  This morning, just so there would be no mistake, Emma grabbed a toy microphone and began singing and dancing under the glare of the light.

Richard came out from the back.  “Do you see what she’s doing?”

“She’s a diva.”

We watched Emma crooning away and shook our heads.  That’s our little girl – drawn to the lights as only a natural born performer could and would be!

On a food side note – Emma ate three forkfuls of the meatloaf I made last night, dipped in applesauce.  (My mother used to serve applesauce with meatloaf, which is how I came up with the idea.) Not only is this incredible and unprecedented, but all the more so because I steamed a head of broccoli, 7 spears of asparagus and two large carrots, then pureed them and mixed them in with the meat before putting it in the oven to bake.  Last night marked the most vegetables Emma has consumed in seven years!  Even though the amount she actually ate was miniscule, it was better than nothing.  She also ate two pieces of rice quesadilla.  Just to be perfectly clear, not two bites, two PIECES, whole wedges.  I bought the rice tortillas from Trader Joe’s, spread it with grated Sheep’s milk cheese and baked it in the oven.  A huge success.  Then I pushed my luck by making another rice milk smoothie, which she refused, even though I thought it delicious.

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

The Search for GF/CF Cupcakes

Yesterday we received a call from Emma’s school because she was hysterical and couldn’t calm down.  Evidently a child in her class had a birthday and the parent sent in cupcakes, which Emma couldn’t eat.  There are few things Emma loves more than a birthday celebration and cupcakes are an integral part of that.  So when Emma wasn’t allowed to eat the cupcakes, she was beside herself.  Eventually she was able to calm down, but it took awhile.

I was with a client when the call came in and couldn’t speak with her, but told the school I would make cupcakes with her when she returned home.  (I have made at least four batches of cupcakes to date, none which she will actually eat.  She and Joe made a batch – she ate two right away and a third the following day, then refused to touch them again.)  But yesterday I found my old tried and true recipe for cupcakes.  Emma has always loved the cupcakes from this recipe, so I substituted gluten free flours and hoped for the best.  Emma enthusiastically poured sugar into the ghee, helped whip everything together, occasionally dipping her finger into the batter and eating it – all a good sign.  I had her help me spoon the batter into the muffin tins and put the whole thing in the oven.  When they were done, beautifully fluffy and perfect looking, Emma eyed them critically before speeding away, saying nothing.

“Hey Em, look!  They look perfect.”  I held one up for inspection.

“No?”  Emma said in that questioning way of hers.

“Oh, Em.  Just taste it.”  I could see she wasn’t going to like them.

Nic came over and picked one up.  “These look great, Mom.  Can I have one?”

I have always taken pride in my culinary skills, but Emma is one tough customer.  She did finally taste one before putting it down again and expressing her displeasure.

“I can’t believe she doesn’t like these.  They’re so good!” Nic managed to say between mouthfuls.

Ah well.  The search for a cupcake recipe Emma will enjoy continues.

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

Week Three

I spoke to a woman this morning who put her child with autism on a gluten free/ casein free/ phenol free rotation diet over a year ago.  About two minutes into the conversation she asked, “Have you seen any changes?”

“Maybe an increase in eye contact, but I’m not sure.”  I paused.  “She seems a bit more affectionate.  Not sure if that’s wishful thinking, but it seems like it’s true.”

“You have to give it at least three months,”  she said.

“Three months?  Please tell me you’re joking!”

She laughed.  “I know.  It’s so hard.”

Then she gave me a couple of tips, like making meatballs, then steaming vegetables and pureeing them to hide in the meatballs and serving them with hummus.  I’ll give it a try, though the idea that Emma would even taste such a concoction seems far-fetched.  Then she told me about some rice tortillas from Trader Joe’s that I can make a quesadilla with, again, I’ll try it.  Who knows?  Maybe Emma will like them.

At a certain point in our conversation, she was asking whether Emma liked any number of things to which I was answering no, no, no, she started to laugh.  “You have to laugh, it’s so awful.”  And we did.  We both just began laughing, because what else can you do?  When I told her Emma won’t drink anything other than apple juice, which she can no longer have because they don’t skin the apples before they juice them and she cannot have any red skinned fruits or vegetables, she asked about water.

“Emma will only drink water that comes from a water fountain,” I told her.  “I guess I’ll have to install a water fountain in our home.”

“Maybe you could hook up a hose or something,” she suggested.  And then we both began laughing again.  For some reason the image of me attaching a hose to our sink faucet and having Emma drink from it, struck both of us as hilarious. All the more so because we aren’t talking about a house in the suburbs, but an apartment in New York City.  Hoses and apartments are not things that go together.  I was grateful for the laughter.

Then my sister called to discuss menopause and how and when that might occur – she’s older and I look to her to advise me on such things, but that’s a whole other conversation.

Last night I had Emma help me make a rice milk/almond butter smoothie.  She loved making it, helped me pour the rice milk in, added ice cubes and then when it was all blended and frothy I said, “Here Em!  Look how yummy it looks!”

Em took one look at it and said, “No thank you!”   She sped away on her scooter, before I could get her to try it.

“Wait Em!  Come back!  Just taste it.”

“No thank you, Mommy.  I don’t like that.”

I put the smoothie down on the dining room table.  “Em just take a sip.”

She came over, peered into the glass, smelled it, then delicately dipped an index finger into it and licked her finger.  “That’s it, now it’s all done.  Mommy have it.”

“You don’t like it?”

“No thank you.  I don’t like that,” she said handing me the glass.

At least she’s polite.

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

Day 13

Today is the thirteenth day of putting Emma on the modified gluten free/casein free diet.  She has found a few things she likes to eat, is slowly expanding her choices, but there are only a couple of things she seems happy to eat and many more that she eats begrudgingly.  Most of the things I offer, she’ll taste, but will then say, “Now it’s all done.  Please Mommy I don’t like that.”

Meanwhile we continue with her studies.  I have not seen any noticeable change there.

Parenting a child with autism is like going on a trek in the Himalayas.  There are moments when you feel you’re not going to make it, your pack is too heavy, your muscles are tired and sore.  You wonder how you’ll take another step, the terrain is too steep and unforgiving.  But there are other moments of untold beauty.  Moments when you look around and see the mountains stretched out before you, the view so majestic it takes your breath away.

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

Day 12

I’m feeling discouraged.  I know.  It hasn’t even been two weeks.  I know.

If a friend of mine told me they were discouraged after less than two weeks, I would say – No!  Are you kidding?  You have to be patient!  You can’t expect her to neurologically change because of her diet in two weeks!  And anyway this is about other things too.  Helping her chronic constipation, improving her focus and ability to attend to her studies, expanding her food choices, making it possible to one day go out as a family to a restaurant or travel places without bringing an extra suitcase of “Emma’s Foods” or worrying about where we’ll find Stonyfield chocolate yogurt or Wheat Bread, the one with the red label from Whole Foods because she won’t eat any other brand or flavor.  This is about not panicking when Whole Foods is out of one of the six things she’ll eat.

This diet requires a tremendous amount of work.  And I’m up for the task.  But every now and again I just want to complain and maybe cry.

A friend of mine sent me the following story:

An old donkey fell into an abandoned well.  The owner of the donkey, ambivalent about how hard he would have to work to try and get his old, and now useless donkey out of the well, decided to fill in the well, a danger to the community and now with the donkey having fallen into it, a way of doing away with the donkey too.  So he called his neighbors to help him shovel dirt into the well and as the dirt fell on top of the donkey, the donkey began to bray.  Horrible sounds, which did nothing to slow the falling dirt.   After a few minutes the donkey decided to shake off each shovelful of dirt and stomped on it with his hooves, while rising to a new level.  Soon the donkey was at the top of the well and able to walk out, much to everyone’s astonishment.

I feel much better now and if you’re having a tough morning, perhaps you are too.

The end of the story is that the donkey then trotted over to the farmer and kicked him as hard as he could.

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

Day 11

Last night I offered Emma a chicken dish I’d prepared with butternut squash and golden raisins on coconut rice.  “Just taste it Em.”   I placed it in front of her and then walked away.

As I was washing dishes I heard Emma say, “It’s okay.  You have to eat it.  Take another bite.”  I continued to wash dishes and pretended to ignore her.  When I peeked over at her she was eating another forkful of the chicken and rice!  Even though I continued to say nothing, she said in her stern voice, “Okay take one more bite and then it’s all finished.”  By the time I came over to her she’d eaten all the chicken and four forkfuls of the rice.  I was ecstatic.

This morning after Emma had her breakfast of two pieces of gluten free toast with almond butter, I began packing up some things to take to my studio.  After about five minutes I looked up and didn’t see Emma anywhere.  “Hey Em!  Where are you?” I heard some rustling noises near the refrigerator and went to see what she was doing.

And there she was, scooter next to her, her beloved string in her lap, furtively eating some green grapes – her newest favorite fruit.

“Hey Em.  Why not sit at the dining room table?”

“No table.  Sitting on the floor,” she said, popping another grape into her mouth.

When it was time to put her coat on to go downstairs, Emma ran to the coat closet.  “Scarf!  Let’s see, how about this one?”  She pulled down one of her scarves.

“Not too tight or we have to take it away,”  she said in her stern voice.  Carefully she tied her scarf around her neck so that it hung down outside of her coat.

“I like your scarf, Em.”  I smiled at her.

“It’s cold outside.”  Emma tightened the scarf slightly and fiddled with it until the snowman’s head lay next to his body.  “There,” she said.

We’re taking this new diet one day at a time.  Emma is making steady progress!

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

Day 10

Riding the wave of my previous day’s success, I fully expected to come home last night to find Emma agreeable to whatever was placed on her plate.  With visions of cheerful family dinners in my mind I set about making Hollandaise Sauce (with those duck eggs and Ghee).  Making hollandaise is a meditative endeavor, I’ve learned.  I cannot carry on a conversation with someone else while preparing it.  I must be focused, attentive with a certain amount of serenity or the whole thing curdles or separates.  I didn’t have any lemons, so I used a lime instead and all went fairly well, though it wasn’t as thick as the hollandaise I usually am able to whip up.  I steamed the asparagus, cooked the salmon steaks, drizzled everything with hollandaise and called everyone to the table where upon Emma took one look at her miniscule serving and said, “No!  I don’t want to taste it.  It’s okay.  It’s okay.  Just lick it.  You have to put your finger in it to taste.  Just one bite.  Taste it.  I don’t want to taste it!  I don’t like this.”  And then she began to whimper.

It was one of those Sybil moments, with Emma scripting using her “stern” voice, then mimicking a TA at her school to take one bite, just one bite, then Emma’s own sad voice pleading and on it went.  Finally I said, “Em you have to taste it, then you can have some grapes and apple (skinned).

“Okay, okay, okay,” she said, dipping her finger into the hollandaise.  “Taste it!”  She smelled the hollandaise, then tentatively licked her finger before looking at me with an expression of pure misery.  “I don’t like it, Mommy.  I don’t like this.”

My family dinner a la Norman Rockwell fantasy fizzled and I felt an overwhelming desire for someone to come and feed her for a month or two – get her eating a whole variety of lovely, nutritional foods before disappearing again.

Later Nic came over to me and put his arms around me.  “Hey Mom?”

“Yeah Nic?”

“I don’t mind this diet so much.  I still get to eat all my favorite things.”  He smiled at me.

“Oh, Nic.  That’s so nice of you.  You’ve been such a trooper with all of this.”  I gave him a hug.  “Thanks for being such a good sport.  It means a lot to me.”

“It’s no problem, Mom.”

This morning as I made my way to my studio I thought about when we tackled Emma’s bedwetting.  We did our homework, found an alarm to alert us to when she’d peed, whereupon we rushed her to the bathroom and eventually she was out of diapers, sleeping through the night with no accidents.  All of that seems like ages ago, but in fact it was just over a year now.  It took three solid months before she learned to use the toilet without incident during the night.  I expect it will take that much time or longer for her to become accustomed to eating new and different foods.

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

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