Category Archives: Alternative Therapies

The Seduction of “Recovery”

Posted on August 7, 2014 by | 26 comments

Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of “recovery.” There were a multitude of different diets, the gluten-free/casein free diet and the GAPS diet, that some said had “recovered” their child, making them indistinguishable from their peers.  There were the bio-med treatments ranging from daily B-12 shots, hyperbaric chambers, ointments applied topically, vitamin supplements, chelation, homeopathic and naturopathic remedies to stem cell treatments.  There were the therapies that made up the center piece of books claiming full recovery and the many doctors and specialists who supported them.

In the beginning we were terrified.  I still remember that feeling.  The nights of not being able to sleep, staring at the ceiling and worrying only to finally slip into a semi-conscious state of fitful sleep.  The next morning, there were often those first 60 seconds upon waking when I’d forget the worries that had kept me up. Then reality would come rushing back and it was like being thrown into a bottomless pit of worry, stress and terror.   The fear was relentless and was fueled by just about everyone we came into contact with.  Our child was far too young to have predictions made about her future, and yet people made them and all of them except those stories of “recovery” threw me into further fear.

People compared her neurology to cancer or Parkinson’s and likened the various therapies and treatments to chemo; a necessary horror that no one enjoyed, but that must be done.   And I believed them.  I had to save my child.  I would do anything to save my child.  Various things were deemed more acceptable than others, but dig deep enough and you can find any number of people, doctors and specialists who swear by whatever it is they believe will transform a child who does not speak, who seems so frustrated and unhappy into a speaking child who is no longer in pain.  Had this not been the case, had they not claimed complete “recovery” we would not have subjected our child to any of it, but instead, we tried all of them.

So much of what we were told seemed to coincide with what we were seeing.  My daughter could not use spoken language to speak.  She seemed to be in almost constant internal discomfort.  She cried, gut wrenching screams of pain, regularly.  Her sleep was erratic, her behavior confounding, her distress with things I couldn’t understand seemed constant, her inability to communicate what was going on made it all the more confusing.  So many of the professionals we took our daughter to seemed convinced that their treatment or remedy or whatever it was would be the thing that changed everything.  I desperately wanted her to not be in pain.  I desperately wanted her to be able to communicate.  I wanted nothing more than to ease her frustration.  For years I never thought – perhaps everyone is thinking about all of this wrong.

So on one hand we were introduced to autism as a horrible thing, but that there were people and things that could “treat” it and if we were lucky she could “recover” and on the other hand we were told no one knew what caused it and there was no cure. It is this, seemingly two opposing thoughts, that many parents are introduced to.  It is no wonder so many choose to believe the former and not the later, even when, in doing so, we head into a labyrinth from which there is no end.  The third idea, that this is a different type of neurology and to compare Autistic neurology with non autistic neurology is detrimental to all involved and to suggest that one neurology can be trained to become a different one is not only an unachievable goal, but an unworthy one, was not introduced to us until much later.

There is nothing quite so awful as to see your child through the lens of those who are seeing nothing but deficiencies, challenges and problems.  Assumptions are made about intelligence based on tests used for a different neurology.   I often wonder what we would have done had we been introduced to Autistic people who didn’t use spoken language, but who typed to communicate.  Would we have been so frantic?  I don’t know.  What I do know is that rethinking everything we once believed, refusing to submit to the idea that autism is the source of all that is wrong, seeing how non autistic neurology has its own set of deficits and challenges, and finding a way for our daughter to communicate has changed everything.  If we spent even a small percentage of the money currently being spent on autism and autism research, on finding better ways to support our non-speaking kids so that they too could communicate using stencil boards, letter boards and typing keyboards, at least some of the panic many parents feel would subside.

2005

2005

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Muddying the Water: Alleviating Pain ≠ “Recovery”

Posted on June 18, 2013 by | 37 comments

A few months ago I wrote about how, once we were given an autism diagnosis for our daughter, so many of the things we believed were uniquely and wonderfully “Emma”, were suddenly thought to be examples of her “autism”.  Things were either categorized as a deficit or a “splinter skill”.  Splinter Skills and Other Words We Use concentrated on talents, interests and abilities.  My friend, Chavisory reminded me yesterday of the physical issues often mistakenly believed to be part of autism.  Things like allergies, insomnia, GI problems, epilepsy and food and eating challenges that often people who are Autistic have, but that many in the general population also experience.

Chavisory mentioned in her comment, a NYTimes article about a drug trial thought to minimize social withdrawal in Autistic people and those with Fragile X.  She wrote, “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” Chavisory’s point is an important one.  This distinction is critical.  Not only because researchers are often trying to treat something that is actually something else, but because it confuses caregivers into believing they can “cure their child of autism”.

When a non autistic person has food allergies or insomnia, we say they have food allergies or insomnia. When an Autistic person has a food allergy or insomnia, many believe it to be yet another aspect of their autism.  People talk about “co-morbid” diagnoses of an Autistic person as though it were all folded into the autism diagnosis.  The problem with all of this is, it muddies the waters and makes people misunderstand what autism is and isn’t.  And it opens the door for many to believe they are curing their child of autism.  Taking care of allergies, GI issues and insomnia will not make an Autistic person non Autistic, however it will make them feel a lot better.

When an Autistic person with food allergies or debilitating insomnia, who also has hyper sensitivities to texture, taste, smell and sound, is given melatonin to help them sleep or a diet that complements their specific constitution, it stands to reason they will exhibit behavior that reflects that.  When anyone, who is in extreme pain and exhausted is helped to have that pain and exhaustion alleviated, they will feel better.  They will be able to smile perhaps, focus, be more alert, even engage in conversation, with an ease they would not exhibit when overwhelmed with pain and exhaustion.  But when this person happens to be Autistic, people use language suggesting their “autism” has been reduced; words like “recovery” and “cure” creep into the conversation.

Suddenly people become convinced that every Autistic person has food allergies, GI issues and sleep disorders and therefore ALL should do x, y or z.    If that doesn’t work, instead of questioning the underlying issue (that perhaps this person does not have an allergy or insomnia)  many will up the ante by doing more radical “treatments” to treat an allergy or condition that the person actually does NOT have.   Logic falls away.  Common sense is rejected.  The pursuit of a perceived “problem” that may have never existed is discounted as not the problem.   The answer is to pour more money into finding the thing that will remove the “autism” even though autism is not what is causing the pain and discomfort.  Special doctors and “autism specialists” are brought in to advise and treat.

When we start throwing all kinds of things at an “autism” diagnosis, when a massive array of physical and emotional things get added, when temperament, interests, preferences, talents become embedded in the “autism” diagnosis we are causing far more confusion and problems to an already confusing diagnosis.  And people misunderstand and say they’ve “recovered” their child or their child has been “cured” instead of recognizing that what’s really happened is they found something that helped their Autistic child, who had allergies or insomnia feel better.  Meanwhile thousands more, who pursue similar ‘treatments’ with no benefit to their child, conclude they need to find a better doctor, or treatment, or diet instead of acknowledging their child doesn’t have an allergy.

Em listening to an opera rehearsal over the weekend 

*Emma

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Standing with Henry, Diets and Where Do You Go to Get Advice?

Posted on October 16, 2012 by | 6 comments

Please read, “like”, share and tweet my latest interview with 13-year-old Henry, published yesterday on Huffington Post.  For all you tweeters, I am trying to get Henry on Katie Couric’s show.  If you’ll click on the link above to read the interview, tweet the piece out and be sure to include @KatieCouric in your tweet.  This is what I’ve tweeted –  “@KatieCouric Henry’s fight for inclusion @arianezurcher http://t.co/vhSs85v2  Katie – Henry’s story would be terrific for your show!”  If enough people tweet her, she may just take notice.  Let’s stand with Henry!

Yesterday’s topic brought forth a wonderful discussion regarding “The Diet” whether it is a gluten-free/casein-free diet or a variation of it.  I realized in reading the comments that my post may have sounded critical of the diet and even critical of those who have tried it with positive results.  This was not my intention and so I want to be clear about that.  I have a lot of feelings about having put Emma through so much trauma as a result of putting her on the (in our case failed) diet. The first time we tried it, when she was still just two years old, did not seem to have the same negative impact that it did just a year ago when I took all her favorite foods away and implemented an even more restrictive diet under the guidance of a well-regarded naturopath.  This is something Emma still talks about, something she is still hyper-worried I might suddenly do again.  I should have placed more emphasis on this.  So to all who have experienced the joy of finding something that helped you or your child, I apologize.  I did not in any way mean to illegitimize what you’ve found to be so very helpful or to suggest the diet is quackery.

What is clear from reading all the links people thoughtfully provided and the many personal stories, a GFCF diet and its various variations, has and does help many children and adults, regardless of their neurology.  An important point, made several times in the terrific comments, was that because of the hyper-sensitivities experienced by so many Autistic people, what might be experienced as a mild intestinal discomfort in a non-Autistic person could be felt intensely and painfully by someone with a different neurology.   Hence a food “intolerance” not even an allergy could cause great distress.

In the post I hypothetically asked, were I able to do it all over again would I have put Emma on the diet?  I wrote, “…I would have sought out a reputable pediatric neurologist who could have given Emma the blood work necessary to tell us whether the diet was something she would benefit from.  I would have looked for scientific evidence giving me reason to put her on such a diet and without that evidence I would not have put her through it.”  Except, I realized last night as I thought more about this, we DID do these things.  We didn’t have a pediatric neurologist, but we did take her to a highly regarded pediatric allergist, did blood work and it showed she was not allergic to anything, but he suggested she may have food intolerances that might be contributing to her constipation issues.  It was this doctor who suggested we try the GFCF diet to see if it might help.

But as one commenter pointed out, in her country there isn’t anyone who will perform such tests.  She wrote, “If I had to do it all over again? I would have done it sooner to alleviate my daughter’s suffering.  For the first few years it was just dairy I removed from the diet.  I thought it too hard to cook gluten-free as well. When I finally adjusted the diet to gluten and dairy free at the age of 4 my daughter ‘s chronic painful distressing diarrhea ceased..”  In fact both her children have responded well to having their diet modified.   Hers is but one example of many who have benefited from implementing such a diet.

To another commenters point, even if they had been able to find such a doctor, their insurance would not cover such tests and they wouldn’t have been able to afford them.   For people like these, who either cannot afford to have such tests run or who cannot find a doctor to even perform these tests, what is the alternative?  What can those people do, other than read and learn all they can while hoping their decision helps themselves or their child.  As any of you know who read the various links to the many articles I posted yesterday on the diet, those articles are NOT all in agreement.  Some state that the diet has shown no positive change, while others suggest that in some cases the diet has helped.  So what is a person to do?

Which brings me to another terrific comment, in which she asked, “…maybe we should really think, do we have proper medical care?  Do we have good doctors? Are we listening to them? Are we skipping the doc and practicing our own medicine? Why are we not trusting our doctors?” By the way this same commenter left another longer and hilarious comment on yesterday’s post that is too long to reprint here, but is really relevant to not just this topic, but ALL topics related to parenting, who do we go to for advise, where do we get our information and why do so many of us no longer trust the medical professionals advising us and instead listen to other parents who are often not doctors or even have any medical training, but have found something that helps or doesn’t help them or their child?

I know it isn’t just me who has come to doubt almost everything I read about Autism.  I know a great many people who feel as I do –  we are almost constantly skeptical. And while some skepticism is a good thing, I don’t know that my past radical approach has proven to be so beneficial in the long run.  These days when I have questions regarding Autism, but particularly related to my daughter, there are a couple of things I do.

1)  I seek advice from a number of Autistics I know, am friends with and trust.  I ask them for both their personal experience and for any research they know of that might help me.

2) If it’s a medical issue related to autism and Emma I run it by my brother who is a bio-chemist and spent years working for a pharmaceutical company developing drug treatments and whose wife, also a bio-chemist who now runs a non-profit trying to make vaccines available to children in third world countries.

3) I get a second opinion either by getting referrals to researchers or people (preferably Autistic) in the field or I reach out to various neurologists I’ve met to get their views.

4) I read whatever I can find, sometimes sending particularly dense articles to my brother and/or my Autistic friends who are involved in whatever field of study it is.

5) Discuss with my husband, foisting said articles on him and try to hash out what we think and what we should do.  If we cannot agree, revisit steps 1, 2, 3 & 4.

I have no answers.

Emma – Summer 2004

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The Path Leading Away From Hell

Posted on April 24, 2012 by | 4 comments

In the last few months, Richard and I have been hit with a surge of information, ideas, alternate ways of thinking that have completely upended our goals for Emma and our thinking regarding autism.  (In the best possible way.) I have written about these shifts in past posts – The Evolution of  a Perception and A Different World, prior to that Waging War where I was still straddling the fence but was getting close to seeing Emma and autism in a new and, I believe, improved way.

A few things have occurred to me in recent weeks, please read this as it is meant, which is as a description of the process, a process I am grateful for.  Some of the words I use are often misunderstood, they have been by me, this is the beginning of that process.  Tomorrow I’ll try to finish this post, but for now this is the beginning…

There were a number of factors that increased my terror at the word “autism” beyond the grim way in which the diagnosis was delivered, the less than hopeful and helpful “advice” given to us.  There were a couple of things I read or was told that have remained etched in my mind.  Such as the pediatrician who advised me to – “Get on with your life.  There’s nothing you can do,” was equally as destructive as reading Catherine Maurice’s book, Let Me Hear Your Voice about how her two children on the spectrum lost their diagnosis with an aggressive ABA program.  That book was the first of many “recovery” books I consumed like a starving person confronted with an all-you-can-eat-buffet.

Whether it was a diet, the vast number of biomedical interventions we tried, behavioral therapies, 40 hours of ABA, 10 twenty minute sessions of DIR/Floortime every day…  you name it, we tried it.  Pursuing these interventions was akin to hitting my head against a brick wall over and over and over again.  In fact, nothing seemed to make much of a difference, and it was that fact that continued to propel us down the “searching for recovery” road for as long as it did.  Because nothing we did seemed to cause any long term continuous progress, in fact at certain points during her ABA program Emma actually regressed, we started looking for more and more radical “alternatives.” Until finally I remember feeling, exhausted, utterly exhausted, physically, emotionally, spiritually, it was as though I’d come to the end of a grueling trek and faced yet another mountain range, there was no breathtaking view from atop some majestic peak, just more of the same and I just couldn’t do it any more.  I was spent.  We had just returned from a third trip to Central America for stem cell treatments, saw very little change and weighed the risks (which were enormous and like a flashing red question mark in neon lights) we said to each other, how much longer can we do this and at what cost?

It was at this point that we found a literacy program that seemed to really help Emma beyond anything we had tried thus far.  At the same time that we embarked on the literacy program, I continued to hold out hope that some sort of biomedical intervention would help her as well. *I am adding this now a year and a half later. –  It is with great regret that we embarked on the literacy program instead of using RPM as this has been what has worked more than anything else.*

This past fall like a burst, one final spark of frantic energy I took Emma to a Naturopath who’d been recommended to me, and put Emma on one more radical “diet” not GAPS, but damn close, pulled the few things that she loved to eat from her diet, saw her lose so much weight it frightened me as she refused to eat anything, and after six weeks of hell, said, enough.  We put everything back into her diet, saw no change at all, and then felt all the guilt that accompanies these failed interventions all over again.  I just couldn’t believe I’d put her through that yet again, (the first time was when she was first diagnosed and two years old.)  All those “suggestions,” the well meaning advice, the referrals to the “miracle” doctors who were recovering kids left, right and center, it was a pandora’s box I just kept going to and opening over and over and over again.  You’d think someone with intelligence (I like to think of myself as that hypothetical someone) would have said, if this guy is such a genius why isn’t he on the cover of Time Magazine, why is it that no one has actually heard of this person, this intervention, this whatever it was?  But I didn’t.  I kept trying different things.  The allure, the seduction of finding the “thing,” the miracle was so great, all rational thinking was suspended again and again.  Add to that – desperation, which actually doesn’t describe what I felt, I was beyond desperation.  I was beyond crazed.  I was on a mission from some other universe.  Nothing was going to stop me from “fighting” for my child. I was determined; I was going to find the thing that would “cure” my daughter.

And after all of that, I didn’t.
And after all of that, it turns out, I couldn’t.
And somewhere deep, deep down, I felt I’d failed her.  To stop trying to find a cure that would remove what plagued her, what caused her to not be able to articulate what she was thinking, was to give up on her.  To stop the search was like leaving her to a future of wordless, silent dependence.  Institutionalization, upon Richard and my death, was her future.  Of that I felt certain.  Who would take care of her?  Who would help her?  Who would hold her when she was sad?  Who would be there to sing and dance with her?  Who would even allow her to listen to the music that seems to feed her soul?  Who?
We are fortunate in that Emma’s long time therapist, Joe and his wife, had agreed that for as long as they were alive they would take care of her  should something happen to us, but that did little to quell my fears.  What about when they both died?  I asked myself.  What about then?
To be continued….
To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’
To read my most recent Huffington Post, click ‘here.’

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Supplements and Doctors

Posted on February 1, 2012 by | Leave a comment

We are currently giving Emma eight different supplements recommended by the naturopathic physician I have been taking her to.  I am not a big pill taker, in fact I must be in extreme pain before I’ll think to take an aspirin and even then, Richard usually has to remind me.  “Honey, why don’t you take some advil?” he’ll say.  “Oh!  Good idea.  I hadn’t thought of that.”  Then Richard will smile at me with a look usually reserved for a very young child.

My deep distrust in the medical community stems from my father’s horseback riding accident when he broke his back and lay hospitalized in a coma when I was just nine years old.  The doctors were skeptical regarding his recovery, some even wondered whether he would come out of his coma at all, while others suggested he would remain paralyzed for the remainder of his life.  When he came to and months later after grueling daily sessions of physical therapy began to walk and even start horseback riding again, I concluded it was all an inexact and questionable science.  Actually my issues with medicine are more likely genetic and coded in during utero, but in any case, I don’t trust doctors.   I view hospitals with the same degree of horror others view a sinkhole, it would probably not be an exaggeration to say I have a phobia toward them.

The fact that I am the driving force in giving Emma eight different supplements, while Richard (who pops aspirin like they’re chiclets) rolls his eyes and wanders off into another part of the house, is nothing short of ironic.

“I have a theory about all of this.”  I made this announcement yesterday morning as I prepared to leave for my studio.  I can’t be sure, but I think Richard muttered something derisive under his breath.  I ignored him.  “I think these supplements have healed the cracks on her heels.  They’re almost all gone.”

“You don’t think all the lotion I rub into her feet every morning and night and making her wear socks has anything to do with that?”  Richard asked, with what sounded to me like an unnecessarily aggressive tone.

“Well let’s stop doing that and see if her feet get worse,” I reasoned.

“No.  We are not going to stop the thing that is probably helping her feet heal.”  Richard countered.

“I’m just saying, if you want to know for sure, we would need to stop and see if the cracks come back,” I said.

“Look, if you want to stop, then go ahead after they’ve completely healed, but we’re not going to stop before that.”

And here’s the thing – Richard’s probably right.  Every evening and morning before Emma gets dressed, Richard carefully rubs ointments and lotions into the cracks on her feet, then he painstakingly finds socks (in colors that match her shoes) and gives them to her to put on before she slips on her Uggs.  Because that’s the kind of amazing guy he is – thoughtful, kind, caring and a devoted dad.  He has been doing this for over a month now and sure enough the cracks on her feet have almost completely healed.

When I took Emma to the naturopath last week he looked at her feet and noticed how nicely the cracks were healing.  I described how Richard was caring for them with lotions and insisting Emma wear socks.  He nodded his head and said, “Well at least they’re healing.”  But I could tell he thought it was from the supplements I’ve been giving her.  I asked him if he thought the cracks could be healing from wearing socks and all the lotion we’ve been putting on.  He shook his head and said, “Socks and lotion aren’t doing that.”

Maybe, but maybe not.  In any case, I’m really glad I have a husband who’s on top of the whole lotion part and we’ll keep giving her supplements in the hope they are doing something positive too.

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

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Supplements

Posted on January 18, 2012 by | 2 comments

A couple of years ago I was told about a doctor who worked miracles on people and it was suggested I go to him for a consultation with the hope it might help Emma.  His office was on the upper west side in a beautiful old brownstone, the interior wall of the office was a waterfall.  The doctor ushered me into his private office and handed me his driver’s license.  I was a bit taken aback, but politely took it.  He said, “Guess how old I am?”  When I didn’t respond he said, “Look at my driver’s license, I bet you wouldn’t have guessed I was that old.”

He was right.  His driver’s license told of him being over 60 years old.  He certainly could have been in his fifties.  I handed him back his driver’s license.  “I’m actually here about my daughter,” I said, lest he misunderstand my intentions.  We then went on to discuss Emma and the various specialists we’d taken her to.  He listened and to his credit told me, without much enthusiasm,  he might be able to help her, but that he would call me in the next few days, something he never did, for which I am grateful.  He did however give me the book he’d written.  It was on blood types and how specific foods should be avoided depending on one’s blood type.  I decided to try what the book suggested and for a couple of months ate only the foods for my blood type.  Other than finding pomegranates do not agree with me, there were no other benefits.  I never did take Emma to see him.

When Emma was first diagnosed I was frantic to find help for her chronic constipation.  We went to at least a dozen different GI doctors and alternative healers.  Not one of them suggested giving her magnesium until I took her to the naturopath this past October.  Yet, magnesium is a supplement that has helped her.  Another beneficial supplement for Emma has been melatonin, given before bed, it helps her sleep.

Currently we are giving Emma seven different supplements, a zinc drink, cod liver oil and nordic fish oil.  Emma is terrific about taking all of it every morning and evening without complaint.  However, the deep cracks on her feet have not healed and the rash on her inner arm continues unabated.  I will continue my search.

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

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Hook Worms & Obsessions

Posted on January 13, 2012 by | 4 comments

It’s easy to poke fun at any treatment which includes the words “hook worms.”  I remember when I first heard about hook worms in treating autism, I immediately thought of leeches and dismissed the whole thing.  By the way this post is not about hook worms, but about how when your child has autism you are constantly confronted with an endless array of “treatments,” almost all of which come with some kind of “scientific” explanation.  This isn’t necessarily a bad thing, a great many smart people are trying to find help for our kids, but it is often confusing.

For those who want to know more about hook worms or Helminthic Therapy, here are some links:  The Guardian, Autoimmune Therapies, for a counter argument against helminthic therapy (hook worms) and for a number of studies being done through various hospitals in the country go to:  http://www.thebostonchannel.com/health/23652453/detail.html, http://www.neurology.wisc.edu/publications/07_pubs/Neuro_5.pdf, http://www.direct-ms.org/pdf/HygienePrinciples/Helminiths%20immune%20reg and www.pubmed.gov.

I am currently reading a book – Obsession:  A History by Lennard J. Davis.  What’s fascinating is how our perceptions of “illness” continue to change.  What began as “demonic possession,” something the Catholic Church cornered the market on by performing exorcisms, the Protestants, attempting to lessen the Catholic church’s power, redefined demonic possession as “nerves” or madness.  This new way of thinking caught on.  What began as a play for power came to define what became  known as “a case of nerves” or the belief that some people were high strung something mainly afflicting the upper classes.  Presumably the lower classes, the peasants didn’t have time to be high strung or if they were, they didn’t have the means to do anything about it.  In reading about the nature of illness and how it has changed over the centuries, it is striking to note how little we knew then (it seems laughable) yet, there is still so much we still do not know or understand.  The remedies applied in the eighteenth century seem bizarre, but in the context of autism, no more bizarre than so many of the remedies I have tried on my own daughter.  I expect that in fifty or a hundred years from now we will look back on much of what we think we know or do not know regarding autism and think how barbaric it all was.

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

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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

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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

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Day 5

Posted on October 20, 2011 by | Leave a comment

Today begins day 5 of Emma’s modified gluten free/casein free diet.  It also marks the second full day of Emma starting on her various supplements and tinctures from the natureopath/physician we saw last Friday.  I was referred to Dr. D through a friend of mine whose daughter also has autism.  When we met, Emma had just been diagnosed.  We got together, S with her daughter AF and me with Emma.  At that time AF was non-verbal, had learned some sign language and had massive sensory issues causing her to scream and cover her ears if there was a loud noise outside.  (We live across the street from a fire station, so it is often quite noisy here.)  She also screamed and cried for reasons not apparent to any of us.

We had been told Emma was on the mild end of the spectrum and at the time, both Richard and I fully expected her to be mainstreamed by Kindergarten, just as so many specialists and therapists assured us she would be.  AF, on the other hand, seemed miles behind Emma and I remember thinking we were so fortunate that Emma was as mild as she was.

Cut ahead to the present – AF is now at or near grade level, was accepted into a school Emma couldn’t get past the first interview of, she talks circles around Emma and though she still displays her autism in a variety of ways and behaviors, she has progressed in ways that are way, way beyond what I would have expected upon first meeting her.   Today AF would be considered “high functioning” or at the very least on the “mild” end of the spectrum while Emma is considered to be “moderately” autistic.

A few weeks ago I called S to speak to her about an upcoming lecture I was thinking of going to.  We began talking about different therapies and she mentioned her doctor/natureopath, Dr. D.  I told her about Emma’s limited diet and my concerns with it.  S urged me to give Dr. D a call and described how he’d helped AF.  It was in this way that I found Dr. D.  We will see what transpires.

Emma last night requested that I pull her around our loft while she lay inside my old sleeping bag that I bought several decades ago for a three week trek I took in Nepal – just me and a sherpa I hired.  But that’s another story.

After her sleeping bag ride, she and Joe made cupcakes.

Emma’s Gluten Free Cupcakes (Emma doesn’t like icing- go figure- this is the way she likes it. Bald. She ate two of these, after putting a candle in and singing Happy Birthday to herself.)

Preheat oven to 325 degrees   –   Line muffin tin with cupcake liners

Mix together:   1 C. organic sugar, ½ C. rice flour, ¼ C. coconut flour, ⅓ C. garbanzo and fava bean flour, ¾ C. arrowroot, 1½ teaspoons baking powder, ½ teaspoon xanthan gum, ½ t. sea salt, ₁⁄₈ teaspoon baking soda.

Add, mixing well:   ⅓ C. melted Ghee, ⅓ C. Organic Applesauce, 1 Tablespoon vanilla extract, ½ C. hot almond milk

Pour well combined mix into each tin until they are ¾ full.  Bake for 8 minutes, rotate and bake for another 9 to 10 minutes.

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

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Day 2

Posted on October 17, 2011 by | 1 comment

Last Friday, I took Emma to see a doctor who has seen over a thousand children with autism and is also a Natureopath.

“What the hell is a natureopath?” My husband, Richard, asked when I told him.

“I’m hoping he can help me with getting Emma to eat different things.  It’s more of a holistic approach, he uses homeopathy and things like that.”

“Circle gets the square,” Richard muttered.

“What?”

“You have no idea what you’re talking about, do you?”

“Yeah, okay.  I don’t know exactly what a natureopath is, but he’s worked with a number of children on the spectrum and I need help getting her to eat more than just a miniscule amount of something.  Also, I don’t know that what I’m giving her is any better than what she was eating before.”

Later, I looked up Natureopath and this doctor in particular and came across this quote from his web site:  “…practice focuses on autistic spectral disorders with special emphasis on chronic immune dysfunction, including allergies, asthma, recurrent or persistent infections and other genetic or acquired immune problems.  He uses diet, nutrients, herbs, homeopathy and immunotherapy to help his children achieve better health.”

On Friday afternoon we went to see the doctor.  Upon our arrival I went over Emma’s history and discussed all the other doctors and various therapies we’ve tried.  We were there for a very long time.

As I spoke, Emma leapt about the room, racing from one chair to the next.  At one point she ran over to the doctor and ran her fingers through his hair.

“Hair!” Emma intoned as though discovering the contents of King Tut’s tomb.

I glanced at the doctor with an apologetic smile.  He seemed at ease and continued making notes.

“You like my hair?”  He asked, while I said a silent prayer that she would say yes and not any number of inappropriate remarks she was just as likely to utter.

“Yeah!”  She said before jumping into yet another chair.

Eventually he had Emma sit opposite him and handed her a copper bar which she grasped in her right hand while he ran another device along the inside of a finger on her left hand.  In this way he tested Emma for over 200 different foods.  Every single food she currently eats was a food that showed up on the “Avoid” list.  But since she only eats about six things, the list was actually not that long.  Each time the machine made a weird beep, signifying a food she couldn’t eat, I groaned.

“Corn,” he said.

“Not a problem.  She doesn’t eat corn.”

To which he replied, “That means anything that has any form of corn – corn syrup, corn starch, corn’s in almost every processed food.”

By the time the testing was finished I was left with a list of “Must avoid” foods ranging from egg whites (from a chicken), corn (and any food with anything derived from corn), potatoes (and all foods containing anything derived from potatoes), all night shade vegetables, any dairy coming from a cow, all soy products, all red skinned fruits and vegetables and of course, wheat.  The only thing NOT on the list that Emma enjoys is maple syrup, raw cane sugar and honey.  I was told we could expect to see some “significant change” within a month.

I’m up for pretty much any challenge given to me, but I must admit to feeling a certain degree of anxiety as I left his office and began thinking about how I was going to implement this list.

“Cold turkey,” he advised.  “Otherwise it’s like ripping off a bandaid very, very slowly.

When he said that, I thought immediately of Nic who much prefers the slow peeling off of a bandaid than the – here-let-me-rip-it-off-for-you approach.

I spent most of Saturday scouring New York City for foods she can eat.  Specifically flours to make a non gluten bread and duck eggs, since Emma can’t eat the whites of chicken eggs.  Duck eggs are a great deal harder to find than one might think.  I finally gave up and have ordered a dozen from a woman in Michigan, who told me all about her ducks, how the older ones aren’t laying much any longer, the eggs she’s sending me are from one year olds and so the eggs might be missing yolks, etc.  She also told me she will send them to me with the dirt “brushed” off, but not clean the way one expects to see eggs in the grocery store.  Having grown up with a brother who had (for a number of years) about 24 hens and a single fierce rooster, he named Digby, I’m not particular about the dirt on my eggs.

“It’s okay, she won’t be eating the shells,” I reassured her.

The woman laughed.  “I’m just warning you.  Duck eggs are much dirtier than other eggs.”

Who knew?  I’m glad for the warning.

Yesterday, Sunday was Day 1.  It was tough.  Emma was not pleased and though I tried to explain to her that she was going to feel much better when she began eating foods that were better for her, she remained unconvinced.  However, she did end up eating a slice of ham, a tiny, imperceptible “taste” of lamb burger as well as a tiny bite of carrot, which she promptly spit out accompanied by “yeach!”  The granola I made, remained untouched, though everyone else in the family thought it amazing.  Nic had a friend over Friday afternoon who brought his 5 year old sister.  All of them sat at the dining room table happily munching on the granola and even asked for seconds, while Emma stared morosely at her serving and refused to eat more than a tiny piece of a dried apricot.

Ariane’s Granola

Preheat Oven to 325°

1 Cup Organic Oats, ½ C. unsweetened shredded coconut, ½ C. unsweetened coconut flakes or chips, ½ C. pumpkin seeds, ½ C. sunflower seeds, ½ C. chopped walnuts, ½ C. pecans (or sliced almonds)

Heat together and then pour ½ C. maple syrup, ¼ C. honey & 1 teaspoon Vanilla extract onto dry mixture.  Mix with wooden spoon until everything is coated.  May need to add a little more honey or maple syrup.

Line a cookie sheet with parchment paper, spread granola in a layer.  Bake in oven for 30 minutes, stirring every 10 minutes to make sure it is uniformly brown.

Add 1 Cup chopped dried fruit.  I used dried apricots and yellow raisins, but any dried fruit would work.  Mix into granola after it’s cooled for 10 minutes or so.

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

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Yes, but… – Autism

Posted on September 27, 2011 by | Leave a comment

A blog follower recently contacted me saying how exciting it is to see how much Emma is progressing.   Whenever someone says this to me, my first reaction is surprise, followed by a shot of hopefulness and finally curiosity.  What exactly do they see?  How is she progressing in their opinion?  So I almost always ask, “In what ways do you see her progressing?”

I then listen intently, making a mental note of the various things.  And then, and I’ve noticed this happens almost every time, I think – Yes, but _________ .  Here is the current list of my “Yes, buts…”

Yes, but she still sucks her thumb and as a result the shape of her mouth has changed, resulting in her front top and bottom teeth no longer meeting because of her massive over bite.  (This thought usually leads to a whole laundry list of anticipated horrors about dentistry, orthodontistry, the worry of how we will have to have her hospitalized to have braces put on – this is what we had to do when she had a cavity) and the exorbitant cost of  all of this.  I become acutely aware of how fast my heart seems to be beating.  Suddenly I am nauseous, can’t eat and wander around feeling ill.  Which leads me to my next – Yes, but:

Yes, but she only eats a half dozen things, all of which are either dairy or wheat and though we put her on a wheat free/ dairy free diet when she was first diagnosed to zero effect, maybe we did it wrong.  A vegetable has not touched her lips in more than six years.  Maybe we missed something.  Maybe there’s something else here that we should be doing.  I then am led to Google and several hours later I emerge from the black hole that only Google can provide, having learned about the dozens of diets all with the ominous warning that early intervention is key.  Which, to my mind, means we’ve missed the boat as she is now at the ripe old age of nine and a half.  If I’m feeling really panicked – almost ten!

Last night I mentioned to Richard my current litany of – yes, buts.

“You’re spiraling off again,” he observed, after I’d finished.  Then he looked at me with an expression of concern.  He sighed and said, “I know, honey.”

I understand that my thoughts, shooting off to the next catastrophe, are my convoluted way of protecting myself.  However that “protection”, all those, “Yes, buts” are what block me from fully enjoying Emma’s amazing accomplishments.

Yes, but…

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

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The Suggestions Autism Inspires

Posted on April 6, 2011 by | Leave a comment

I have been trying to find a probiotic that Emma might be willing to take with little success.  Yesterday I asked the man in a health food store for help and when I mentioned it was for my autistic daughter he asked the usual questions regarding her diet (limited), her activity level (high), etc.  I am usually reluctant to get involved in such a conversation as I am almost always inundated with well meaning advice.  Advice that has little, if anything, to do with my original question and advice I have received by literally hundreds of people in the last seven years.  Yesterday proved no different.

“You need to train her to eat healthy foods,” he began.

I smiled in response while remembering the last time we attempted to get Emma to take something she didn’t want to take.  It took three adults holding her down, while I tried to force a spoonful of antibiotics in her mouth.  She writhed around and blew the contents of the spoon out of her mouth with such force it hit me in the face.  Richard stood up at that point and said, “We can’t do this.  There has to be another way.”

My face dripping with Emma’s saliva mixed with the pink sticky antibiotics we had forced into her mouth, I was inclined to agree.

“She should eat only raw fruits and vegetables,” the man in the health food store continued, warming to his subject.

I stared at him and said, “I really am just interested in finding a chewable probiotic that she might actually try.”

Undeterred, the man continued and then said, “You should call this man, he can help your daughter.”

“Is he a doctor?” I asked.

“Oh no!” the man said, looking horrified.

“Is he a specialist in autism?”

“No, no, nothing like that,” the man said, scribbling down a name and phone number.

“So who is this person?” I asked.

“He has vitamins, special vitamins,” he answered.

I looked around the store.  A store well stocked with vitamins of every kind and said, “Look, I am sure this person is a lovely human being, but I don’t need vitamins at the moment.  Thank you anyway.”

“No, no, this man is different,” he said as I turned to leave.

“They always are,” I answered.

Over the years I have had conversations with so many people I can no longer count, exactly like this one.  During those first few years I even took Emma to a number of people I had heard about from others, who claimed to have some inexplicable cure, vitamins, tinctures of homeopathic remedies, healers, people who I am sure believed that what they were doing could and would make a difference, and perhaps they did for someone else’s child.  But whatever it was never made a difference for Emma.

I have had people contact me insisting their child, nephew, grandchild was miraculously healed, began speaking in full sentences etc. as the direct result of whatever magical potion they were telling me about.  It’s not that I think all these people are making up success stories, they are far too passionate for that, it’s that I have heard so many of these stories, literally hundreds of them and they are always of something different.  Each remedy is an anecdotal story of a child the person knows, and yet I have never been told about the same remedy working for anyone else.

One of the things I have learned over the years is that one can spend every last dime one has on these potions, healers, etc. and there will never be an end to it.  One can spend every moment running from one referral to the next, one remedy to the next and there will always be a new one around the next corner.  At a certain point, one cannot continue to investigate every single suggestion given, it simply is not possible from a financial standpoint or time-wise, but most importantly – one must ask the question – what is this doing to my child?

I have no doubt the man in the health food store genuinely thought he was doing me a tremendous favor by telling me about his friend.  What he couldn’t know was that I have hundreds and hundreds of scraps of paper with names and phone numbers scribbled down of people just like his “vitamin man”.

After I left the health food store I was able to locate a chewable probiotic at Whole Foods that miraculously, Emma was willing to chew.  I will see if it makes a difference, though I am not holding my breath.

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

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Desperation & Coping (Part One)

Posted on September 9, 2010 by | Leave a comment

Desperation is the shared feeling almost all parents of autistic children feel at some point.  It may be fleeting, but I have yet to meet a parent who did not feel some degree of desperation as they tried to make sense of what it means to their child and entire family when autism is diagnosed.

Since Emma’s diagnosis, many people have recommended all kinds of things.  Books to read, vitamin supplements, therapy programs, diets, doctors, specialists, DAN (Defeat Autism Now) doctors, Gastro-Intestinal Pediatricians, Neurologists, Developmental Pediatricians, Psychics, Nutritionists, healers, Shamans, Homeopaths, massage therapists, Qi Gong Masters, I could go on, but I won’t.  When I look back on those first few months after Emma was diagnosed, everyone I ran into seemed to know someone with an autistic child whom they wanted me to speak to or who was doing something they felt might be useful.  See Our Emma, The Beginning and The Beginning (Cont’d) for more.

Many of these suggestions turned out to be extremely helpful.  But in the beginning it was overwhelming.  I simply could not process my emotions as well as organize her therapies quickly enough to make good use of the plethora of information I was being given.   I made a file, which I labeled “Emma” and threw everything into it.  For months I was unable to look in the file.  During that initial period, when I wasn’t taking Emma to various doctors and overseeing her therapists, often seven in a single day, I was reading books and on the Internet trying to learn all I could.  Only then was I able to start going through the file filled with suggestions.  It was a difficult period for all of us.

Emma – Summer, 2006 – Two Years After the Diagnosis

As time went on and we adjusted to our life with autism, I found it easier to take the time to investigate a suggestion made.  Now when I receive a suggestion and if it seems even vaguely helpful I will pursue the suggestion with more vigor.  There have been times when people suggest things, which I have already tried or seem very close to something we’ve already tried and so I dismiss it.  And then there are the times I have dismissed something, only to revisit it later.  I try to maintain an open mind while being aware that unfortunately there are many people who see autism as an opportunity to make a great deal of money from desperate parents like myself.  Anyone can claim anything with little or no proof of its efficacy.

Like the many doctors we have spoken to, parents of autistic children have very strong feelings regarding autism and what will or will not help.  With few guidelines and only anecdotal evidence to go by, it is easy to become mired in a stew of conflicting information or as in most cases, not enough information, studies or clinical trials to make a decision, which doesn’t carry some doubt.

I remember speaking to one mother of an autistic boy who was becoming increasingly violent.  She had bite marks on her chest and arms from his latest tantrum.  She was frightened of her child and said to me, “I don’t want to put him on meds, but there are days when I dread going home.  As he gets bigger and stronger I become more afraid. I don’t know what to do, anymore.  And how do I know the meds won’t harm him in the long run?  Our kids are guinea pigs.”

She was but one of many parents faced with the realities of caring for an autistic child.

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Soma Mukhopadhyay’s Workshop

Posted on June 7, 2010 by | 2 comments

A number of people contacted me regarding the documentary – A Mother’s Courage – the documentary about an Icelandic woman’s search to help her autistic son.  The documentary tracks the journey of a mother who interviews many and eventually goes to Austin, Texas where Soma Mukhopadhyay has created the Halo Clinic.  Soma is the mother of a non-verbal autistic child, Tito.  (Tito is no longer a child.) Soma developed a program, Rapid Prompting Method, to teach her son to read and write.  Tito has gone on to write several books, despite being non-verbal.

Joe, Emma’s therapist and I drove out to the Bronx this past Saturday where Soma was leading a workshop.  Soma described RPM as a method to “empower the student and express himself.”  Soma’s method takes a non-judgmental view of self-stimulatory behaviors.  She believes they are clues that can help us interact and teach the autistic child.  Soma never once implied nor does her website that her method is a “cure” for autism.   RPM is a means by which autistics can learn to communicate.

For those of us who parent an autistic child, that is an amazing and wonderfully hopeful prospect.  There is not a day that passes when I do not have the thought – I wish I knew what Emma was thinking.  I wish I had a window into her world.  The idea that Emma might one day be able to read and write is something I have hardly dared to wish for.

Toward the end of the workshop, Soma’s son Tito wrote on the large pad of paper Soma had propped up on an easel:  “I think you are talking too loud.”  Soma had been speaking into a microphone.  She held the microphone to his mouth so he could hear how he sounded as he made a noise into it.   It was a light hearted moment, a moment of a teenager commenting on his mother.

Tito writes in his book – The Mind Tree:  “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being – ready to grow together.”

I have ordered Soma’s book describing in detail her Rapid Prompting Method.  I am guardedly optimistic.

For more information on Soma and her work with her son Tito, go to:  www.halo-soma.org

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