Category 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

The Diet

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

The Missing Survival Instinct

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

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 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 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

Em

Emma holds an uncanny resemblance to a fictitious children’s book character.

Okay, so we haven’t gotten the whole handstand-on-the-handlebars thing down yet, but I’m sure that’ll be next.

Merlin watches and waits.

He just cannot help himself.

Food update:  Emma ate a blueberry last night.  This morning – one blueberry, (not her favorite) a slice of apple, a slice of pear and a piece of banana!

After eating all of that she said, “No more medicine.”

I’ve got my work cut out for me.

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