Tag Archives: picky eaters

Pizza and the Art of a Low Key Response

Posted on March 29, 2012 | 12 Comments

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

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Crocuses, New York City Firemen and Emma

Posted on March 13, 2012 | 5 Comments

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


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The Hospital

Posted on February 29, 2012 | 6 Comments

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

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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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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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Emma – The Performer

Posted on November 3, 2011 | Leave a comment

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

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The Search for GF/CF Cupcakes

Posted on November 2, 2011 | Leave a comment

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

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Week Three

Posted on October 31, 2011 | 2 Comments

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

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Day 13

Posted on October 28, 2011 | Leave a comment

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

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Day 12

Posted on October 27, 2011 | Leave a comment

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

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