Tag Archives: living with autism

The New Year

Posted on December 30, 2011 | Leave a comment

I asked Nic this morning if he was looking forward to anything in particular in the new year.

“To sleep in,” he said with a grin.

“Really?”

He laughed, wryly (I might add) and nodded his head.

What I didn’t say, but thought, was – We’ve been on vacation since the 16th!  You could sleep in every morning if you wanted.  But Nic likes sleeping near his Granma and so has set up a little bed in her office for himself on her foldout couch with the promise that he make up his bed every morning, which he has.

“Hey Em.  What about you?  Are you looking forward to anything in the new year?”

Emma ignored me.

“Do you know what it means to look forward to something?” I tried again.  ”It’s when we feel excited about something that hasn’t happened yet.”  I waited as Emma who had turned her back to me, continued to twirl her string that she has now “repaired” every morning since we’ve been out here.  The “string” resembles a snow board in the middle with long, thin tentacles coming out of the repaired part.  She holds onto the fat, taped part and twirls it in her hand very quickly.  ”Hey Em,” I tried again.  ”Are you looking forward to anything?”

“Yeah,” she said, staring out the window.

“What?  What are you looking forward to?”

“Uncle Victor and Aunt Susan took a train home,” Emma said, nodding her head, twirling her string and looking sad.

“Does that make you sad?”

Emma looked at me with such a sad expression and nodded her head.  ”Yeah.”

I continued to ask her in various ways if there was anything she was looking forward to or wanted to have happen in the coming year, but Emma walked away or ignored me, until I finally stopped asking.

People have likened Emma to a two-year-old, but this is incorrect.  For one thing it vastly underestimates her and for another, it oversimplifies every aspect of her.  Emma’s mind is capable of some fascinating leaps, she will come out with incredibly creative ways to communicate – such as when her teacher, Lauren every Friday dresses up as “Laurenzo” and so Emma began calling herself Emmaenzo, which she (and everyone else) thought hilarious.  It is easier to think of a child like Emma as a “two-year-old” and leave it at that, but it does her a great disservice.  I continue to insist her mind is far more complex, holds all kinds of interesting thoughts and I insist on this thinking because I have seen too many nonverbal children with autism display staggering intelligence, but who are treated by many as though they are “two-year-olds” or worse.  I have read the poems and stories they have written.  These children and adults are profoundly intelligent, but their thinking and their difficulties in communicating are so vast most of us do not have the patience or interest in hearing from them.

What I wish for, what I look forward to in the new year is for all of us to increase our awareness of our possibilities.  We are capable of so much, whether it is an act of kindness toward another or withholding our judgements when we are annoyed, looking to our potential or assuming the best in one another instead of the worst.   If I could wish one thing for both my children, it would be that they realize their potential, and now come to think of it, I wish that for myself too.

Happy New Year!

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

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What They Don’t Tell You

Posted on November 7, 2011 | Leave a comment

Here are some things you will not find in your research on autism:

You will not learn how this diagnosis will affect your marriage or other members of your family.  You will not be told how it may fundamentally alter your perceptions of what is “normal”, how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with autism may cause you to feel things you never dreamed possible.  You may know moments of joy and moments of despair you could not have imagined.  You may find yourself going to untold lengths in the hope of helping your child.  You may feel distracted, unable to concentrate.  Your work and career may suffer.  You may learn what it is to be sleep deprived.  You will come to know what it means to feel desperation.  You will know sorrow in a way no one can prepare you for.  You will know happiness in a way no one can prepare you for.  Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it.  You may contemplate doing things you would have scoffed at before your child was diagnosed.  You may find yourself doing things that defy logic and have no medical basis.  You may listen to implausible, anecdotal stories and think – we will try that next.  You may dream your child is speaking to you in complex, beautifully self aware and revealing sentences.  You may wake from those dreams believing for a few seconds they were real and not a dream.  You will pray that you might dream again.  You will welcome sleep, as you never believed possible.  You may ache with sadness because your child is crying and in pain and your presence brings them no solace.  You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted.  You may feel the exquisite joy from having your child reach for you, ask for you, call for you.  You may know the joy that comes with seeing your child work so hard at something that does not come easily to them.  You may celebrate when they use the correct pronoun, even though they are no longer a toddler, when they learn to get dressed on their own, drink from a cup, say hello to you without being asked or simply acknowledge your presence.  You may feel a gratitude you would not have believed possible.  You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is.  You will know what it is to appreciate commonplace things – eye contact, the correct use of the words “me”, “you” and “I”, physical contact initiated by your child, a word, any word spoken.

You will feel a fierce love for your child that seems to come from a place that is not of this world.  You will know what it is to love unconditionally and you will understand what that really means.

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

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An Overview

Posted on November 4, 2011 | Leave a comment

On autism.com‘s web site, they write:

“What is the Outlook? Age at intervention has a direct impact on outcome–typically, the earlier a child is treated, the better the prognosis will be. In recent years there has been a marked increase in the percentage of children who can attend school in a typical classroom and live semi-independently in community settings. However, the majority of autistic persons remain impaired in their ability to communicate and socialize.”

After receiving an autism diagnosis for one’s child, most people go to the internet to learn more.  Quotes like this one abound.  What these sites do not say, cannot say, is what will specifically help your child –  What interventions, if any, will make a difference, what biomedical, dietary & behavioral approaches will work?

This quote is also from autism.com’s website:

“Conclusion Autism is a very complex disorder; and the needs of these individuals vary greatly. After 50 years of research, traditional and contemporary approaches are enabling us to understand and treat these individuals. It is also important to mention that parents and professionals are beginning to realize that the symptoms of autism are treatable–there are many interventions that can make a significant difference.

The logo for the national parent support group, the Autism Society of America, is a picture of a child embedded in a puzzle. Most of the pieces of the puzzle are on the table, but we are still trying to figure out how they fit together. We must also keep in mind that these pieces may fit several different puzzles.”

A parent of a child with autism quickly finds they will need to read enormous amounts, speak with a great many “specialists”, sift through the endless opinions (often stated as fact), and try to make sense of all the various articles, papers, news items and books currently in print on autism.  In addition they may watch the numerous documentaries, interviews, YouTube clips and all the other visual forms that exist relating to autism.  Having done all of that a parent must make decisions as to what they can and cannot do, what they can and cannot afford to do in their attempts to help their child.  While they are making these decisions, they must cope with their own emotions, trying hard to keep depression, worry, panic, fear, sadness and guilt at bay.  They must learn to manage these feelings while continuing to research and do what they are able to with the hope something they try might just help their child.

But most important perhaps, we must never give up.  We must try in our darkest hour to see the light.  We must treasure our child’s differences, celebrate our child’s uniqueness, rejoice in our child’s strengths.

Years ago Richard and I went to a couple’s therapist.  He listened to us both individually and then asked us to meet with him together.  As we sat side by side on his couch he told us he didn’t want to hear about our latest disagreement, he was much more interested in hearing from each of us what the other had done right in the last 24 hours.  We were told to go home and keep a journal, recording all the things the other had done that was kind, thoughtful and helpful.  He encouraged us to examine each act, to consider things we perhaps took for granted.  It was the single most helpful advice anyone ever gave us.

This blog is a version of that exercise.  While I do my best to accurately document Emma’s progress or lack of, while continuing to try different interventions, I also try my best to celebrate her.  Let me concentrate on her strengths while I continue to do everything in my power to help her build on those same strengths and perhaps she’ll discover new ones.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’sHopeBook.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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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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Day 11

Posted on October 26, 2011 | Leave a comment

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

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Day 10

Posted on October 25, 2011 | 3 Comments

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

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A Comment

Posted on October 13, 2011 | 2 Comments

A follower of this blog wrote the following response to yesterday’s post.  I posted it here as it beautifully sums up exactly what my husband, Richard and I also feel and why we work as hard as we do with Emma.

“I think maybe this is what most parents or carers of children with autism aspire to.  Not to extinguish quirks and unique personality traits, rather to help our children function in this world, to cope, to survive, to find happiness. It is not as simple as just accepting someone as being unique when they can’t go out in public without dropping to the ground and self harming over some issue or they can’t even attend to their own most basic needs when they  become distressed, when there is an unavoidable change in routine, when they cannot even travel safely in a car or bus ( we’ve been there believe me), when they have no way to communicate their needs or to even tell a parent they are in pain or scared or hungry, when they want to reach out to a friend, but don’t know how and so are left friendless, when they struggle to eat because the food repulses them, struggle to even hold a fork or use a knife. That is not something I will accept for my children. I want more for them than that. As a mother I have had to watch my children cry in pain and be unable to hold them in my arms and give them this most basic of comfort, rather being forced to witness their anguish and left helpless. These are things that need to be changed and worked on. If that is a “cure” bring it on I say.”

I have never met the woman who wrote this comment, but we have been corresponding now for awhile.  She has two children on the spectrum, each utterly unique.  Her comments are always thoughtful and insightful.  Though we live on separate continents with several oceans between us, we have a great deal in common.  So, to you Liz – thank you for blazing a trail and sharing about it.  You have helped me more than you can know.

For more on autism and my daughter, Emma’s journey through it, go to:  www.EmmasHopeBook.com

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