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On Autism and Hope: "Nine Days Into the Special Diet, I Heard A Voice Behind Me Say..."

Hope-1 Below is the speech given by NAA New York Metro Chapter member Mary Hernandez at the NY City event formally designating April 2010 as Autism Awareness Month.  It's a powerful reminder of how often the doctors write off our children, and how the children themselves prove them oh so wrong. We hope you enjoy reading it as much as we who were there enjoyed listening.

April 19, 2010

Thank you, Lisa. Thank you to all of you who came tonight, and thank you, Kim, for all that you do.

Good Evening. my name is Mary Hernandez. I am the Staten Island Liaison for National Autism Association, NYC Metro chapter.  I am also the mother of two beautiful children. Luis is 11, and Ana is 10. When Luis was diagnosed with autism, I didn’t know it at first. Sure I knew there was something wrong…  After being a very connected and sociable baby, he had regressed. He had horrible head banging and temper tantrums.

But when the neurologist told me the diagnosis… after pointing out to me all the “signs,” as she called them:

“See how he is walking on his toes…?”

“See how  he hasn’t played with any of the toys and just lined them up from the door to the opposite wall?...”

“See how he has never acknowledged your presence the entire time you have been in the office...?”

“Your son’s problem,” she informed me, “is what used to be known as ‘infantile schizophrenia.’”

As soon as I got home I rushed to my computer to search for the words “infantile schizophrenia,” and all the citations that came up, used a different word: “AUTISM.”  I realized the neurologist was trying to spare me by not using the dreaded “A” word, because at that time, the word autism was synonymous with hopelessness.

Here on World Autism Awareness Day, I am so happy to say that things have changed so much over the last decade.  The “A” word is no longer such a hush-hush topic, and autism is no longer synonymous with mental illness in the minds of so many. Unfortunately that awareness has come because of such a dramatic growth in its incidence. Today we are starting to hear statistics as high as 1% of all children and one in 38 boys. Most everyone you talk to knows someone — a nephew, a son, a daughter, a neighbor’s child—with autism.
Yet more and more often today, most everyone knows someone who has made dramatic improvements or lost the diagnosis.


I was fortunate to connect with a woman through my work who told me her son, who had autism, was now in a regular high school on the honor role. She recommended I start with trying a special diet. I was very skeptical, but figured it was worth a try.

At that point, Luis was 4. He was essentially  non-verbal with 5 approximations of words of spontaneous speech. He did not make eye contact, did not respond to his name, and had just tested out at 18 month level for receptive language.

Nine days into starting a special diet, as I was working on my computer, I heard a voice from behind me say, “I want to watch ‘Baby Songs Animal songs’ video.” I immediately ran to the door, thinking I must have left it open and a neighbor child had walked in. But the back door was still locked. I went to the front door—also locked. I knelt down in front of my son and asked him, “Did you just ask to see a video?” “Yes,” he responded. It was a word I had never heard from him before. Of course, I ran and put on the video and tears rolled down my cheeks as he proceeded to sing all the songs with the video while doing all the hand motions. That night he called me “Mommy,” and he slept through the night for the first time since he was 15 months old!

That dramatic awakening gave me unbelievable hope, but it was just the first step in a long journey working to overcome his many underlying health issues. He had colitis, osteoporosis, malabsorption, mitochondrial dysfunction, sensory integration disorder, auditory processing disorder—just to name a few. In working to help other families of children with autism, using what I had learned, I came to understand there are many factors that contribute to autism, making each child a unique puzzle whose pieces are always different. Today, after use of classical homeopathy, Luis is thriving in 5th grade. He is on the basketball team and little league. I realize my son’s remarkable response is not usual, but the vast majority of children who work to resolve the underlying medical issues make significant progress. There are people now who insist that Luis must have been misdiagnosed, that autism is a devastating lifelong condition from which such dramatic improvement is impossible.

While that reaction is somewhat annoying because it denies all the hard work and trials and tribulations I lived through to get to this point, I understand it.  Eustacia Cutler, Temple Grandin’s mother , spoke in her book “Thorn in my Pocket” of how she denied her initial feelings of denial and that contributed to her feelings of inadequacy. But she also asked herself the question: Would she have survived without that denial? She believes now that denial gave her the time to make room for hope—a hope that was born of having options and actively taking them on.

In my work with families as a counselor in nutrition and other interventions, in my work with National Autism Association, I try to open up those options to parents — options that can provide for hope through new outcomes and new paradigms. The source of that hope may be a bit different for each family and each child affected by autism, but our message on this World Autism Awareness Day it to let the world and -- especially, all families affected by autism -- know, there are real options. There is acceptance. There is real support. There is hope.

Let’s turn this World Autism Awareness day and month into an Autism Action Month by spreading that message of hope to others. Together, we can be the hope that can make the difference that is so needed for all families affected by autism.

Thank you.

Mary Hernandez is a Holistic Health Counselor and Liaison to the Staten Island Branch of the
National Autism Association NYC Metro Chapter . She lives in Staten Island, NY with her husband James, son Luis, age 11, daughter Ana who will soon turn 10, and stepdaughter Crista. You can read her articles, Organic Produce, Is It Worth the Price?  and  Exploring Dietary Interventions for Special Needs  in Hope Magazine. 


 

Comments

Jenny

These words could have easily been spoken by me. Hearing "mommy" days after starting the diet made me think "Ok...this is it. Decision made...we are on this path.". After six years of hard work we are still recovering our son, with amazing progress year after year. All interventions seemed to do at least a little something, but homeopathy has been the most effective. Recovery is possible, but it does break my heart that there are no guarantees and some still fight so hard. We are all in this struggle together!

Teresa

I'm glad this diet helped your son. If this diet worked for all autistic kids it would be great, but it doesn't. It did nothing for my son, but he is not your "classic" autistic. He never did the head-banging or hand-flapping, those obvious signs. He also has Down Syndrome, so did not get diagnosed with PDD-NOS until he was 9. I know of others who tried the diet for a year or so & nothing. There are so many pieces to this puzzle and we still have to keep looking for that "cure".

n

YEA!!!!

michael framson

This is a powerful story that would benefit the equally powerful self-induced* deafness which afflicts the Chicago Tribune, Autism Speaks, and the IACC.

self-induced.....fingers in ears

chantal Sicile-Kira

Mary,

I'm originally from Staten Island. I am glad to know that there is hope and help for people there. Keep on doing what you do!

Chantal Sicile
Curtis High School 1974

pass the popcorn

That is a beautiful story. Thank you for sharing it.

Jeff C.

Thank you for sharing your experience and God bless your son. It was stories like this that led us to try GFCF for our son despite being told it was futile and even dangerous (ominous voice) by the doctors.

Our son was diagnosed HFA at age four, he could speak, but his vocabulary was very limited. He was in a daze, wouldn’t make eye contact, and just didn’t seem to listen. His teachers mentioned he acted as if they were speaking in a foreign language; he just didn’t seem to comprehend what he heard. His tantrums were unbelievable, and once they started, they had to run their course.

Three days after being GFCF, my wife excitedly met me at the door and whispered, “call Joseph’s name and watch his eyes”. I called him and he immediately turned, looked me right in the eye and said “yeah, dad?” Of course, we both kept trying it over and over for the rest of the night, just to make sure we didn’t imagine it and to make sure it didn’t go away. That was almost exactly one year ago.

Today he is thriving. GFCF, good nutrition (we use Kirkman’s DRN), methyl B12 and cleaning up his gut have changed our lives. He’s alert, attentive, and social. His IEP has to be re-written every few months, his teachers gush about how proud they are of him. The tantrums dropped 80% after GFCF, and then just gradually faded away entirely. His speech has improved dramatically, he still has some articulation issues, but it is getting better by the day. He is in developmental kindergarten this year, but should be mainstreamed into a regular curriculum next year.

Publicizing these stories will cause other parents to give biomedical a try despite the stern warnings of the medical community. Sooner or later, the white coats will have to take notice. There are just too many videos and other evidence of clearly ASD kids that dramatically improved.

Yizzy

Mary,

Thanks so much for sharing your wonderful story. I had a very similar experience. About 24 days into our special diet my son came up to me and said, "I want to go outside and bike." Of course, with tears streaming down my face, we went outside and found his big wheel, even though it was 50 degrees out there. :)

Mary Hernandez

Thanks to Age of Autism for posting this. I hope Luis's story provides inspiration to others. He certainly inspires me, every day!

Somehow the links to articles are working for me. Here's a link to Hope Magazine Online Food for Living, April Issue. http://hopemagazineonline.com/foodforliving.htm

-Mary Hernandez

Tracy McDermott

Go within every day and find the inner strength so that the world will not blow your candle out... that was my FB update 48 minutes ago.
I put my son on the diet at 17 mos. old. He remains nonverbal now approaching 8 yrs old, but 3 days into it, he went and got a ball that had rolled past him a thousand times and brought it back to me. I have shared that story with countless moms of newly diagnosed toddlers.

My candle of hope has continued to flicker for six years as we navigate his complicated puzzle. With each medical layer we peel back, a piece of my boy returns. He is delightfully well mannered, happy, and has a personality that makes your heart shine. Hope is such an important aspect of this journey... thank you for reminding us of that!

Anne McElroy Dachel

I hope stories like this need to get passed on to every doctor and teacher working with autistic children. For far too long experts have written these children off.

Anne Dachel
Media

anon

wow! great speech

Parent

Fantastic article and fantastic mom!

AnaB

Great job Mary! So happy things have turned out so wonderfully for your son.

I laugh when I hear so called experts on TV saying parents just do the diet with our kids to feel like we are doing something and that it doesn't work (even as they've never 'studied' it). Please, as if we'd keep our children on this highly inconvenient were it not yielding tremendous results!!

As a person mildly on the Spectrum (I have Non-Verbal Learning Disorder, which is like Asperger's but a bit milder), I cannot put into words how being on the GFCF diet has drastically improved my life (can now look people in the eye without feeling fear, much quicker processing, vast improvements in short term memory and recall, significantly reduced anxiety).

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