Tag Archives: Alternative Therapies

The Path Leading Away From Hell

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.’

Day 5

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

The Suggestions Autism Inspires

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

The Search

One of the things I realized early on in my search to help our daughter was, there are a number of people who believe they know what causes autism and many more who believe they can cure it.  There is also a tremendous amount of money to be made from desperate parents, like myself.   I cannot tell you how often I took Emma to an alternative “healer” who claimed, if I just kept going and paying them their enormous fee, Emma would be cured.  I do not believe these people meant to deceive, I think they really have convinced themselves their method will cure a child and if it does not, it is because we didn’t give it enough time.

In many ways Bruno Bettelheim’s refrigerator mom is alive and well even if it has taken on a new twist in today’s world.  While no one came right out and said – You are to blame for her autism (and to blame if whatever method they were pushing didn’t cure her) – it was inferred by the questions they asked.  What follows is a sampling of a few of the questions I have been asked over the years.

Did you drink caffeine during your pregnancy?


Did you or do you drink alcohol?


Did you take any sort of medication during your pregnancy or labor?




What about aspirin?


Did you sun bathe?


Did you have an epidural during labor?

No.  No drugs, natural childbirth.

How long did you breast feed?

9 months.

Just nine months?

Yes.  Emma didn’t want to breast feed, she weaned herself.  I wasn’t going to force her to breast feed when it clearly distressed her.

Ahhh…  Did you eat fish?

A couple of times.

What kind?

Grilled swordfish.  I didn’t know about the mercury levels in fish when I was pregnant with Emma.  It was only a few times when we were in Cape Cod.


There it was, finally, the answer they were waiting for.  Depending on the practitioner, the questions changed and as a result, my answers, but there always came a point when I gave the “wrong” answer. It always ended the same way with the same look – eyes downcast, a slight sad shake of the head.  I came away from these ‘interviews’ feeling angry, but I also wondered if there was any truth to it.   Maybe the two times I ate grilled swordfish while we were in Cape Cod, really was enough to cause her autism…  I think as a mother, it is second nature to wonder if something one did during pregnancy horribly effected the baby.  To this day I feel tremendous guilt for having unwittingly eaten swordfish during my pregnancy with Emma.  I honestly did not know how toxic our oceans had become.

I have become particularly wary of those who are adamant autism is caused by any one thing.  My guess is, it’s multi-causal, but who knows?  I am also wary of those who speak with absolute assurance they know how to “cure” autism with diets, behavioral therapies and alternative remedies.  Autism is a neurological disorder and while all of these things may play prominent roles in children getting better, I have yet to meet a child who has been cured, in fact, I have yet to meet anyone who has met a child who has been cured.

The Beginning (Cont’d)

Some of the books I read:

Let Me Hear Your Voice: A Family’s Triumph over Autism by Catherine Maurice

*Nobody, Nowhere by Donna Williams

*Emergence:  Labeled Autistic by Temple Grandin

*A Slant of Sun: One Child’s Courage by Beth Kephart

*An Anthropologist on Mars by Oliver Sacks

Maverick Mind by Cheri Florance

A Parent’s Guide to Autism: Answers to the Most Common Questions by Charles A. Hart

The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders by Bryna Siegel

Handbook of autism and Pervasive Developmental Disorders by Donald J. Cohen & Anne M. Donnellan, ed.

Biological Treatments for Autism and PDD by William Shaw, Bernard Rimland, Pamela Scott, Karyn Seroussi, Lisa Lewis & Bruce Semon

Special Diets for Special Kids by Lisa Lewis

*Sensory Integration and the Child by Jean Ayres

Teach Me Language: A language manual for children with autism, Asperger’s syndrome and related developmental disorders by Sabrina K. Freeman, Lorelei Dake & Isaac Tamir, illustrator

*Engaging Autism by Stanley Greenspan

*The Child with Special Needs by Stanley Greenspan

*Denotes books that were very helpful and continue to be

When I wasn’t reading books on autism and canvassing the internet reading the endless array of therapies being offered, each with it’s own little morsel of hope attached –  perhaps this will be the thing that she responds to – I was scheduling Emma’s early intervention therapists.  There were often 7 therapists in a single day, coming and going.

I look back on that period and wonder what it must have been like for Emma.  How odd it must have seemed to her, but she took it all in stride.  There were a few exceptions, the days when I would sit outside her bedroom door during her therapy, leaning my head against the wall listening to her scream as she tried to leave the room, but the therapist would patiently tell her she could not until they had finished and I would cry, fighting the urge to let her out – all that separated us was the four inch wall of her bedroom.  I remember feeling that everything I thought I knew as a mother – all my maternal instincts were useless.

Our Emma

What lengths would you go to if your child were diagnosed with autism?

This blog is about what we have learned, what we have done and continue to try in the hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her and what drives us to go to such extremes to help her, hopefully, achieve some day.

Five and a half years ago we received the news that she had been diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified).  Since then it has been nothing less than a wild roller coaster ride of hope, disillusionment, gratitude, determination and perseverance.

Here are some of the therapies we have tried in the last five plus years:

Gluten/Casein free diet – no noticeable change after five months

Homeopathy – up to 13 tinctures a day delivered orally – suppose to help her gut issues – no noticeable change after more than 10 months.

Cranial Sacro Therapy – did seem to help her constipation issues at first, but over a longer period (close to a year) did not appear to help enough to warrant continuing.

Qigong Master – suppose to help regulate her “energy flow” and promised to “cure” her autism – no discernible change after almost 6 months.

Chelation – we did one round before discontinuing upon advisement from a number of lead and metal specialists out of Albert Einstein College of Medicine.

Detox Foot pads – Pads that supposedly draw toxins from the body while she slept.  No noticeable change after several months.

Brushing Therapy – Emma became very hyper as a result of brushing therapy and after her sleep became disrupted we discontinued.

Auditory Integration Therapy – while this therapy did not seem to adversely effect her, it did not appear to help either.  We discontinued after a few years when she began objecting to it.

Hyperbaric Chamber – We did not do more than 10 sessions.  So I cannot comment on whether this may have helped or not.  We discontinued because we were starting the stem cell therapy and wanted to do one over the other.

ABA (Applied Behavioral Analysis) – 40 hours per week – we discontinued after two years when Emma began regressing.

Stanley Greenspan’s Floortime Therapy – We continue to use Stanley’s DIR methods.  Emma has made noticeable improvements in language – both receptive and expressive – as well as shows a real interest in initiating play with others, both adults and peers, as well as a huge uptick in imaginary play as a result.

Stem Cell Therapy – The Institute for Cellular Medicine – Costa Rica

We took our daughter Emma for her first bout of stem cell treatments with the hope that they might help her autism in March, 2010.  The Institute for Cellular Medicine was introduced to us by Emma’s neuroscientist in New York City.  This treatment is in it’s infancy, they have only treated about 100 autistic children, but are seeing promising results.  The stem cells were harvested from umbilical cord blood and mixed with her own blood serum..  They then injected this mixture intrathecally and intravenously on Tuesday and again on Thursday.  She was sedated for all procedures.  Emma had a bad reaction to the first round, evidently fluid leaked from her spinal cord causing blinding headaches and vomiting.  We were able to calm her with pain medication and by Wednesday evening she felt much, much better.  We decided to go ahead with Thursdays treatment and had them sedate her after the procedure to ensure that she lie flat and thus lessen the likelihood of seepage from her spine.  She was also given a drug to reduce nausea.  She rested in the hospital with us by her side for almost four hours.  We have been told that we should not expect to see any significant change for a month or two.  We will be returning to Costa Rica for round two in August.