Tag Archives: Autism

The Missing Survival Instinct

Posted on December 2, 2011 by | 4 comments

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

4 Comments

Posted in Autism, diets, picky eaters

Tagged , , ,

Cheerios

Posted on December 1, 2011 by | Leave a comment

Yesterday morning I asked Emma if she’d like to have some Cheerios for breakfast.

“Yes!  Cheerios!” she shouted.

I poured some into a bowl and then gave them to her with vanilla unsweetened rice milk.  She hesitated before digging in.  “I like Cheerios,” she announced.  “Cheerios for dinner?”

“No Em.  We’re not going to start having Cheerios for every meal again.”

“Just for breakfast,” Emma said, nodding her head up and down.

When I came into the kitchen this morning, Emma had placed the box of cheerios with a half gallon container of regular organic cow’s milk on the kitchen counter next to a bowl and spoon.  “Oh no, Em.  You can’t have this milk.  You can have your Cheerios with this one.”  I handed her the rice milk.

“I don’t like that one.”  She turned away and said, “No more Cheerios.  Have toast with cheese in the bakery instead.”

“In the bakery” is what Emma says when she wants something heated up in the oven.  When she first said it last summer while we were in Aspen, we were all confused.  I even took her to a restaurant in town called – Main Street Bakery.  Eventually we figured it out – she wanted to have two slices of bread, lathered with butter, put on a cookie sheet and then baked in the oven.  She likes to sit on the floor next to the oven door, periodically peering through the window into the oven until it’s done.

But this time she added that she wanted cheese, which was a first.

“Here Em, which cheese do you want?”  Barely able to contain my excitement that she was asking for something different, I showed her the three different kinds of sheep’s milk cheese and one goat’s milk cheese so she could choose.

“This one!”

“You wore her down,” Richard said.  “What happened to the Cheerios?”

“She doesn’t like the rice milk, so she won’t eat them.  Anyway, I noticed they have corn starch and she shouldn’t have anything with corn.”

Richard nodded his head and kept walking.  Richard has never been a huge proponent of this second round on the GFCF diet.  His feeling is – we tried it when she was two with no change, why would it do anything now?  But being the kind, supportive and generally awesome guy that he is, he has gone along with it.

I know none of this makes any real sense.  Emma has shown no significant uptick from taking all these various foods away and it’s been almost seven weeks.  But still I hold out hope, against all reason, against all evidence, against anything rational.  If I’m being honest, I have always wondered whether I didn’t do the GFCF diet right the first time around.  Maybe I wasn’t strict enough, maybe there was a food that she shouldn’t have had that I didn’t know about.  One can drive oneself crazy with this kind of thinking.  I know.  My husband knows.  Definition of crazy:  Doing the same thing over and over again and expecting a different result.  So yes, I get it.  But, for what it’s worth, here’s my (crazy) thinking – she didn’t test intolerant for gluten, so we’re putting it back in, but staying away from all the things she did test an intolerance for just in case some of those might be causing her problems.   I cannot imagine there will be any change, though.  Hope doesn’t rest on rational thinking however.  At this point I’ve downgraded my expectations to the idea that she’ll expand her diet.  It would be so nice to go out occasionally to a restaurant as a family.

It would also be so nice to have a personal chef – and that wish hasn’t transpired either.

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

Leave a comment

Posted in Autism, diets, hope

Tagged , , , ,

Nic & Emma

Posted on November 30, 2011 by | 2 comments

This morning I told Emma she had to take a shower and wash her hair.

“Just Emma.  Bye-bye Mommy,” Emma said as she ran into the bathroom, closing the door firmly behind her.

“No wait, Em.  I’m just going to supervise.  You need to rinse all the shampoo out of your hair, otherwise we have to wash it all over again.”

From behind the closed bathroom door I could hear her say, “No Mommy!  Emma do it!  Emma do it!”

This is great, I thought.  She’s at an age where she needs privacy, all developmentally appropriate.

Later Emma joined me in the kitchen where Nic had just appeared, hair wet and sticking straight up in the air, as he too had just washed his hair.

“Nice,” I said.

“What?”

“Your hair.  You might want to run a brush through it, Nic.”

Nic rolled his eyes and sat at the dining room table listening to who knows what on his ipod.

“Here Em.  You have to brush your hair.”  I handed her the hair brush.   “And you’re next Nic.”

Nic either didn’t hear me or pretended not to hear me.  Either way there was no response.

“Hey Nic!” I said again in a louder voice.

“Huh?”

“Nic.  Your hair is sticking up.  You need to brush it.”

Nicky!  You need to brush it!” Emma parroted.

Nic ignored both of us.

“Nicky!”  Emma said loudly.

“Emma!  Be quiet!”  Nic shouted with irritation.

“YOU HAVE TO BE QUIET!”  Emma echoed.

“EMMA!”  Nic shouted back.

“Nicky!  Stop talking!”  Emma yelled.

Nic caught me trying not to smile and said, “What?”

“Nothing.”

“Why are you smiling?”  he demanded.

“Nope.  No smiling.”

“Mom!  You’re totally smiling.  Why are you smiling?”  Nic punched me.

“Ow!  Nic!   You just punched your mother!”

“Nicky!”  Emma shot over on her scooter and thrust the hair brush at him.

“Mom she’s torturing me!”

“Torturing?  Seriously?”

Emma then began to try and brush Nic’s hair.

“Oh my god Mom!  She’s torturing me.  Make her stop!”  he said, as Emma attempted to brush Nic’s snarled hair.  “Ouch!  She’s hurting me!”  Nic said with feigned pain.  He held his head between his hands and pretended he was in agony.

“Okay Em.  Give Nic the brush.  He’ll brush his own hair,” I told her.

“Emma do it,” she insisted.

“No Emma.  Seriously.  I’ll do it,” Nic said, grabbing the brush from her.

Emma began laughing.  “I want to brush Nicky’s hair.”

“No Em.  You brush your own hair,” I said.

“Already did brush hair,”  Emma said indignantly.  “Now it’s Nicky’s turn,” she said before racing off on her scooter.

The diet update –  I spoke with Emma’s physician about the diet yesterday.  Since Emma did not test intolerant for gluten and because we’ve seen no significant change in over six weeks, we are putting gluten back into her diet.  This morning Emma ate Cheerios with rice milk.

“Well that should decrease the anxiety,” Richard commented when he saw the box of cheerios on the counter.

“Do you think she felt a lot of anxiety?”

“I meant yours,” he said.

“Oh.”

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

2 Comments

Posted in Autism, Parenting, Siblings

Tagged , , , , , , , , , ,

A Look Back

Posted on November 28, 2011 by | 4 comments

When Emma was first diagnosed Richard and I decided to start noting her progress in a little leather bound book we entitled – Emma’s Hope Book.  The idea was that it would be just that.  A book filled with hope.  After the first few months of making sporadic entries, we wrote in it very little.  We were immersed in Emma’s “boot camp” of 35 hours of ABA, with therapists coming and going, then there was the speech therapy and the occupational therapy as well as the homeopath, the cranial sacral therapist and the DAN doctor.  In addition, I was caring for Emma’s older brother Nic, who we had decided to keep out of nursery school, (even toyed with the idea of homeschooling both the children) before we knew of Emma’s diagnosis.

A few months ago I came upon the original Emma’s hope book and flipped through the 27 entries spanning the time of her diagnosis – 10/2004 – April/ 2010 when I began this blog.

The first entry was written by Richard in October, 2004.  He wrote:  “Emma said, “Peek-a-boo-I-see-you!”  Pointed to her eyes when I said, “no eyes.”  I said – “Bertie hit you with his tail” and she immediately grabbed his tail.”

In the beginning we looked for any sign of understanding or attempt to communicate, no matter how small.  While other two-year olds know well over two hundred words, Emma said very little.  It was difficult to gauge how many words she really knew, as days would go by with no words spoken at all, then other days she would say half a dozen words that she never repeated.  I now wonder that those words weren’t things she’d heard and was echoing back, but didn’t really know or understand.

In any case, the first Emma’s Hope Book never got off the ground.  It was suppose to be a document of hope, something we desperately wanted to feel, but often had in short supply.  We would hear of some new treatment, a diet, biomedical intervention, or therapy and would feel a surge of hope, only to feel that hope dwindle as the months wore on and she made little if any progress. When we learned of the stem cell treatments in Central America, we felt another surge of hope, which was when I began this blog.  It was intended to show her progress from the stem cell treatments.  By the third treatment, we still hoped stem cells would be the thing that threw Emma out of her “autism” and into our world of “normalcy.”  But whatever progress she’s made from the stem cell treatments is not something we can pinpoint or even know with any certainty.  They may have helped, but they just as easily may not have.  We never saw such a massive uptick that we were left without doubts as to their effectiveness.  This has been our experience with almost everything we’ve tried.  All the biomedical interventions, all the behavioral therapies, all of them have done very little.   Or perhaps it is more accurate to say – None of them have had a huge impact.

But, call us crazy, we keep trying to find ways to help her.  We keep looking.  We try to keep an open mind.  We try to keep our hope alive.  There are days when our hope falters, though usually it is just one of us who feels particularly glum and the other is able to infuse some hope into the conversation.  Every now and then we both feel a lack of hope and that is when we will remind each other to look back.  We look at how far she has come.  The one intervention that has made a huge difference is Emma’s literacy program.  We remind each other that just one year ago, Emma couldn’t form all the letters of the alphabet, now she is writing complex sentences, uses the past tense and is often able to use the correct pronoun in answering a question. She did not know what a math equation was, let alone able to solve one or write one.  We are often exhausted, but even through our exhaustion we are able to enjoy and appreciate Emma in all her Emmaness.   Just as she is.

Emma found this old Halloween Costume of Nic’s and put it on saying – “I’m a monster!”

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

4 Comments

Posted in Alternative Therapies, Autism, hope

Tagged , , , , , , ,

Emma’s Literacy

Posted on November 25, 2011 by | 5 comments

Today Emma wrote the following sentences:

It is a good visual reminder of how nicely she is progressing.  After she wrote these sentences she became frustrated with two longer sentences she was suppose to remember and write.  I finally had to break them down into smaller pieces.  We then worked on reading comprehension.  The idea being – it won’t matter how well she reads if she cannot understand what it is she’s just read.  Like many children on the spectrum, Emma has a tough time saying what a story is about.  So we are slowly trying to build a foundation for her to be able to do so with increasing ease.  At the moment it remains very difficult for her.

Yesterday and this morning have been hard for Emma.  Her routine was interrupted, I spent a good part of yesterday cooking, we had guests for Thanksgiving and though Emma loved having family and friends over and sitting with us at the dinner table, I think the disruption proved tough.  She’s been out of sorts, a little crankier than usual.  This morning she kept insisting she go to the Central Park zoo and the big carousel; all things Richard did with her yesterday.

I never know what the reason is for her steps backwards, particularly when we can also see her many steps forward.  I keep hoping things will just move forward with no steps back, but this is unrealistic.  I know.  I have to keep my eye on the bigger picture and not get weighed down with the little daily upsets.  As we worked together this morning we had to stop several times as she became too upset to continue.  Her frustration is in glaring evidence during these moments.  She clenches her fist, hits her legs or pinches herself, so we had to stop each time and wait.  I understand how frustrating it must be to not be able to make the words come out right, to not be able to retain a seven or eight word sentence, to want to give up.

“We have to keep trying, Em.  I know it’s hard, but you can’t give up.”

“I know,” she said, nodding her head and looking sad.  “I know.  We have to do it again.”

“That’s right, Em.  You’re doing great.”

“Last time.”

“We’ll do it until you get it.”

“Okay.  Last time.”

And then she did it perfectly.

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

5 Comments

Posted in Autism, literacy, Parenting

Tagged , , , , , ,

Another Mom’s Comment

Posted on November 24, 2011 by | 1 comment

This comment from the “On Engagement” post was so beautiful I wanted to share it.  Her daughter is also named Emma.

“I love your Utopian world. I wish it existed. I avoid going to events sometimes because I just don’t want to have to have Emma deal with the looks, or me at times. Her tantrums are nothing like that of a two year old either. She is eight, and carrying an eight year old out of a store spitting and biting and screaming in a piercing , gut wrenching manner gets many looks. One time Emma lost it in a fabric store. I should have known better because it is overstimulating. She loves textures, but does horrible in overstimulating environments. Anyway, it ended abruptly when I had to take her screaming and kicking out of the store. I held onto her for dear life, wishing I had parked closer, hoping no one would see me. I almost accomplished this endeavor when a woman started approaching me as I was desperately getting Emma to buckle her seat belt. I was sure she was coming over to tell me what a horrible mom I was, how social services should be called on me because it felt so violent as I held onto Emma and I imagined it looked violent as well. But instead, she came over and asked if she could hug me. She told me her son was autistic and has been a participant in much worse tantrums and just wanted me to know I was loved. I felt an angel had been sent to me. What a world of difference it would make if people were less worried about judging others and more concerned about helping others. A smile to a parent that is in need can make such a difference. We are all mothers, or daughters, or fathers, or sons. That is something that binds us all. Why not honor that in our daily encounters and help a struggling parent, not shun her, and refrain from assuming.”

Happy Thanksgiving!

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

1 Comment

Posted in Autism, Parenting, special needs

Tagged , , , , , , , , , ,

Connection

Posted on November 23, 2011 by | Leave a comment

Yesterday I was shown a video of Emma with one of her classmates, Charlie.  Each year Emma has had someone she particularly likes.  Someone she will talk about and want to sit next to.  Last year it was an adorable little boy named Justus, the year before it was Ben.  This year it is Charlie.  Charlie doesn’t have much language, but they connect on another level.  In the video Emma and Charlie are hugging each other and Emma is doing something with him that I have only seen her do with her older brother, Nic.  She is running her fingers through his hair while laughing.  The two of them are so adorable with Charlie beaming and Emma laughing, the two of them hugging each other and then Emma puts her hands on his shoulders, while maintaining eye contact she bends from side to side and bops her head up and down.  Charlie follows her lead and they laugh while doing a kind of dance together; watching it made me cry.  Something so simple.  Something seemingly so small.  Two children laughing together.  Two children connecting with each other.  For me it was akin to receiving the Nobel Peace Prize.

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

Leave a comment

Posted in Autism, friendship

Tagged , , , , , ,

On Engagement

Posted on November 22, 2011 by | 6 comments

Last Sunday I was interviewed by an NYU graduate student in the award winning actress and performer Anna Deavere Smith’s class, On Engagement.  The class covers the various forms in which we engage with one another.

One of the students asked me how I would like to see others engage with me when I am with Emma and also how to engage with Emma.

“Without judgement, for starters,” I answered.

Other people, but especially other parents can be extremely critical when confronted with a nine-year old who has fallen to the ground, screaming as though they were a two-year old having a “meltdown.”  Trust me, we aren’t talking about your typical meltdown.  I’ve been the mother of a toddler having a meltdown.  There is a vast difference between Emma’s upset and a two-year old who has been told they cannot stay at the park for another hour.  For one thing Emma is no longer two years old, for another, even a two-year old is not apt to punch themselves in the face or bite themselves so hard you can see a perfect imprint of their teeth on their arm.  Many people witnessing such a scene make the assumption the parent has done something horrendous to cause such a display.  So there’s blame, added to the guilt the parent may already feel.  There’s also something else people do not often speak of and that is contempt.  Contempt for the parent and the child.  People use nicer words such as impatience or irritation, but both Richard and I have been on the receiving end of those stares, those under-the-breath mutterings or outright shouting at us – “Can’t you keep your kid quiet?”  or “Why can’t you control her?”  (These are the more polite versions of some of the things people have said to us.)  Those comments are full of contempt.

As far as engaging Emma – my wish would be for people to treat her with respect and assume she can understand them.  This is tricky because it is easy to think she doesn’t understand, to talk about her as though she weren’t there, to ignore her.  I have spoken to others about Emma while she was in the room and now regret it.  My oldest brother is amazing when it comes to engaging Emma.  He talks to her, asks her questions and even though she will often ignore him, he continues.  He doesn’t allow her nonverbal response to deter him.  And she adores him.  Absolutely adores him.  Emma talks about him, asks about him and excitedly anticipates seeing him again.

The last question asked was if I could make up a Utopian world, what would it be.  I loved that question.

It would be a world where we greeted one another as we would a favorite family member.  A world where we approached each other with love and not preconceived notions of who and what that person was because of the way they looked, sounded, their nationality, race or political views.  A place where we embraced our commonalities and not our differences.  I know, it all sounds annoyingly pollyannaish and simplistic, even corny, but what if each of us tried, just for one day to do this?  What if we tried to put our judgements aside?

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

6 Comments

Posted in Autism, Parenting

Tagged , , ,

Literacy, Diets, Progress

Posted on November 18, 2011 by | 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

5 Comments

Posted in Autism, diets, literacy

Tagged , , , , , , , , , , , , , , , , , , , , , , , , , ,

A Little Gratitude

Posted on November 17, 2011 by | 2 comments

There is a lot of great news out there regarding autism.  Many families have tried biomedical and therapeutic interventions with terrific results.  The website, autism.com has great information about treatments that have worked for many children on the spectrum.  No one can predict whether any of these will help your child.

When I was in my early thirties I sought help from the medical community for my bulimia.  I was depressed, could not stop the destructive cycle of binging and throwing up.  There seemed little to live for.  I phoned several rehabs and after speaking with several doctors and eating disorder specialists, I was told the longer a person had an eating disorder, the more intractable and harder to treat it became.  When I mentioned I had been bulimic for going on two decades there was silence.  I remember hanging up the phone and feeling utter despair.  I felt a similar despair when Emma was diagnosed.  But then, as I had when I was still bulimic, I became determined.  That determination served me well during those difficult years.  I never gave up and eventually found enough people who were able to help me, hold my hand and advise me.  I learned I couldn’t recover on my own.  I learned how to ask for help.  I learned to lean on others.  And I learned that in my darkest moments, if I remembered to reach out to someone else in need, to offer to help them, my own problems diminished.  I have tried to live my life in this way ever since.

Sometimes when I read about other people’s successes with their children, while happy for them, I feel sad for Emma.  I believe it’s natural to feel this.  I will never give up on Emma.  I will continue to do all I can to help her and while I do, I continue to work on my impatience while remembering to be grateful for each moment with her.

A little gratitude goes a long way.

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

2 Comments

Posted in Autism, eating disorders, Parenting

Tagged , , , , , , , , , , , , ,

Bruno Bettelheim

Posted on November 16, 2011 by | 4 comments

Most of us have heard, and many may have even read, some of Bruno Bettelheim’s ideas and work.  For those of you unfamiliar – Bruno Bettelheim, born in Austria, came to some prominence when he became director of the Orthogenic School, in connection with the University of Chicago for children with a variety of emotional and neurological issues.  His book, The Empty Fortress was published in 1967; read by many and touted as the final word on autism and its cause – the aloof and emotionally withholding mother.  At the time, his views on the subject became widely known and the treatment for autism was to put the mother in psychoanalysis.  The belief that the mother, in her lack of love for her child, caused the child to withdraw from the world was adopted by many.  Bettelheim claimed a high success rate of children with autism in his school.  It was only until after his suicide that many of his former students came forward with harrowing tales of abuse.  Much of Bruno Bettelheim’s work and ideas have since fallen into question.  The concept of the “refrigerator mom,” something he was an advocate of, has proven to have no validity.

Last week I had a piece published in the Huffington Post – http://www.huffingtonpost.com/ariane-zurcher/children-with-autism_b_1080076.html – a woman, now in her nineties wrote to me about her experience of being the mother of a child with autism, diagnosed in 1961.  Rather than examine her child when she sought help, she was put into analysis and blamed for her child’s neurological issues.  She wrote a book, A Few Impertinent Questions, http://301­45.myautho­rsite.com/, that tells of her painful journey.  It is a powerful story.

As I read her book, I reflected on what we think we know now about autism and what will come to light in the future.  Fifty years from now how will we view what we think we know?  What ideas will seem almost comical because we will have learned so much more.  What therapies will have fallen out of favor?  What new therapies will have taken their place?  What will be proven and seem obvious in fifty or sixty years from now, but are not obvious to us now?  I, most likely, will not be around in another fifty years to know the answers to these questions, but I am sure much will be revealed.

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

4 Comments

Posted in Autism, Bruno Bettelheim, Parenting

Tagged , , , , , , , , , , , , , , , ,

Isolation, Autism and a New Camera!

Posted on November 15, 2011 by | Leave a comment

It’s interesting to note that autism, something defined by a lack of social skills, which in turn can lead to isolation in the children who are diagnosed with it, can have an isolating affect on the parents of those children for very different reasons.

How many of us have lost friends, seen some slip away after our child’s diagnosis while others we chose to avoid because they seemed unable to understand?  And what about family members?  When Emma was first diagnosed I felt such fear and worry and turned to a number of girlfriends I had at the time.  A couple of them were suddenly too busy to get together, while others just didn’t reach out.  Perhaps it was too much for them, too painful, who knows, but I felt incredibly sad when I realized those friendships were not able to withstand the diagnosis.

Now seven years later since we received Emma’s diagnosis I have new friends, many I’ve never met, others are from my life before, some even came back after having left for awhile.  What is wonderful though, is that those that are no longer in my life, I rarely miss and those that are in my life I am grateful for.

On an entirely separate note – Richard, my wonderful husband, bought me an early Christmas present, a new camera!

Emma at gymnastics on Sunday

Getting a little help from Brett

This morning waiting for the school bus

This is a hawk we saw in Union Square Park on Sunday!  (This has nothing to do with autism, I know, but isn’t he beautiful?)

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

Leave a comment

Posted in Autism, New York City

Tagged , , , , , ,

The Diet

Posted on November 14, 2011 by | 6 comments

It’s been a month.  Last Monday I wrote that it had been four weeks and two days, I was wrong.  It just felt like it had been a month.

One month ago, on October 16th we began Emma on a GF/(modified) CF/ soy free and a great many other free diet.  This is our second go around with this diet.  The GFCF diet was the first thing I did when Emma was still two years old, to no noticeable change.  However, that first time she began eating a great deal of soy – soy yogurt being her favorite.  I was working with a DAN doctor at the time who tested her for hundreds of foods but never said anything about all the soy she was eating.  So after three months we took her off the diet and again saw no change.  This time I’m working with a naturepath/physician who also tested her for hundreds of foods.  This time, the list of foods to avoid was much longer than the first: cocoa, corn, potatoes, chicken egg whites, all red skinned fruits and vegetables, bananas, peanuts, onions and garlic.   Emma did not test negatively for wheat, but he advised we take her off it anyway, just to be safe.  Oddly, she also didn’t test negatively for sheep and goat’s milk, so we’ve allowed her to have sheep’s milk cheese, sheep’s milk yogurt and duck eggs.

Still we have witnessed very little change in Emma.  We’ve grown used to this.

I keep thinking I’m going to find something, something that other families have tried with significant results, but so far, other than Emma’s literacy program, we have not.  It’s frustrating to try various things and see little, if any, change.  As I’ve written before, we think we are seeing an increase in physical affection, but it’s hard to say this with certainty.  We have definitely not seen a profound change of any kind causing us to feel without a doubt that this diet has done anything.  Still I will give it more time.

Why some of these interventions work for some children and not others is something that’s been debated for awhile.  Why is it some children are mainstreamed after a few years of intensive 40 hour a week ABA, yet for children like Emma, they were not helped?  How is it that some children go on a GFCF diet and within days are transformed from a screaming, frustrated, incoherent child to one who is speaking in full sentences, playing with toys in an “appropriate” manner and displaying a never before seen curiosity of those around them?

It is easy to blame oneself, but I don’t believe that is the answer.  I know of too many cases where the parent has tried a great many things only to find their child did not respond.  I wonder whether it is the children who do respond, who are the exception.  While this thought depresses me, I have to wonder whether it isn’t more accurate.

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

6 Comments

Posted in Autism, diets, Parenting

Tagged , , , , , , , , , , , , , , , , , , , , , ,

What is

Posted on November 11, 2011 by | 2 comments

A Zen buddhist teacher told me once – anything that happens in life is an opportunity to practice.  I remember my feeling of irritation when she first said that to me.  As the years pass I think of her and her statement often.  Whatever it is that is happening – if I can suspend my judgement and not label it as good or bad, but just as what is, I have taken away one more obstacle.

I think of Emma, beautiful, amazing Emma, who is unique and like no other child.  Her autism is neither good nor bad, but what is.   Even as I write this I can feel the tug in my chest, the little voice whispering to me, no – it is bad.  As though by accepting I will have given up.  As if my judgement will somehow make it go away.  As though the label will somehow change it.  I am not in the we-must-accept-and-do-nothing group.  I am in the – my labeling her autism or anything else for that matter as bad does not take it away – camp.  It just adds one more thing that I am fighting.

My practice is to continue the fine art of balancing what is with what I wish to be. What I wish for, what I hope for, what I work so hard for is to help Emma become more independent.  To celebrate her strengths, to encourage her to sing, to join her in her joy of music, to push her to work on her spelling, reading, writing, typing, math and language.  To gently lead her away from her rigidity, to embrace her silliness, to urge her to explore and be curious.  While I am doing that, I continually remind myself that each moment is a moment that simply is.

Emma is and for that I am eternally grateful.

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

New York City Empire State Building taken from the High Line last night.

2 Comments

Posted in Autism, New York City, Parenting

Tagged , , , , , , , , , , , ,

Preventative Measures

Posted on November 10, 2011 by | 1 comment

The New York Times published a piece in August of this year about the role the environment plays in the rise of autism.  It begins with the question asked by many people who are hoping to become parents  – What can we do to decrease the risk?

I have often thought about what I would have done differently, knowing what I now know.  There are a number of things, things I didn’t know to do or not do when I was pregnant with Emma.  There are a few things that appear to have some scientific basis to them, such as taking prenatal vitamins at least three months before getting pregnant and continuing to take them for the duration of the pregnancy.  I began taking them when I learned I was pregnant with Nic, though interestingly, with Emma I was taking them before I became pregnant with her and continued throughout the duration of my pregnancy.  I would not have eaten any fish of any kind during any part of my pregnancy.  I ate grilled swordfish a couple of times in my second trimester with Emma.  I also used fingernail polish remover a couple of times and had my hair highlighted once during my third trimester.   I would have stopped using all artificial sweeteners and I would have been more careful after the 9/11 attacks by not going downtown to Richard’s office in Soho to work.  Beyond those incidences, I did not take any drugs of any kind, not even aspirin, I didn’t consume caffeine or alcohol, I did not have an amniocentesis, avoided all and any invasive procedures, had two sonograms and gave birth naturally in a birthing center.  It seems unlikely that anything I did while pregnant contributed to her autism, but who knows?

After giving birth I would have done a number of things differently.  From the moment she took her first breath I would have eliminated all onion, garlic, dairy and wheat from my diet while I was breast feeding.  During those first few months when she was so uncomfortable and “colicky” I would have kept a food journal to see if there were other foods I was consuming that upset her and then eliminated those.  Since Emma seemed so uncomfortable when I breast fed and much preferred drinking breast milk from the bottle, I would have tried different techniques in swaddling her or having some sort of soft cloth between us so our skin to skin contact wasn’t so uncomfortable for her.  I would have started brushing therapy (click link for more detailed information on brushing) with joint compressions (see link for a detailed description of joint compression exercises) during this period as well.

Then there are the things I wish I had done much sooner such as  Dr. Marion Blank‘s literacy program instead of all those hours spent doing ABA.  I wish I had discouraged Emma from sucking her thumb.  I would not have introduced corn, soy, wheat, dairy or any foods that are thought to be problematic for some children.  I would have obtained an evaluation much sooner as well as taken her to a neurologist and had an MRI done before she was 18 months old.

Had I done all of those things, would any of it made a difference?  Except for introducing Dr. Blank’s program right away, which I am convinced would have made an enormous difference, who knows?  How much of a role does the environment play?  How much is due to genetics?  I have questions, lots of questions.  None of which will likely be answered any time soon.

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

1 Comment

Posted in Alternative Therapies, Autism, diets, Parenting

Tagged , , , , , , , , , , , , , , , , , , , , , , , , ,