Tag Archives: alternative treatments

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

Yes, but… – Autism

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

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?

No.

Did you or do you drink alcohol?

No.

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

No.

None?

No.

What about aspirin?

No.

Did you sun bathe?

No.

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.

Uh-huh…

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.