Letting Go of the autism Label

I originally posted this on  a while back, but it’s still pretty relevant to me.

Gina

emily shaules 006

When Dougie was ill,  autism was a word I needed. I was looking for answers to my son’s illness, behaviors, developmental regression and complete change of character and consciousness. I needed a definition. I needed a reason.

I needed to call it autism and beat it with a bat. Scream at it. Punch it. Kick it. Spit in its face and hate it for all it did to my boy. For the night terrors and 36 hour sessions without sleep. For the vagueness in his eyes. For his sadness. For the loss of the boy who hugged and kissed. For all it prevented us from doing.

I hated autism. And I needed the word. I felt as though the definition would fuel my reason and research. But the word quickly became a taboo in our home. My husband refused to hear me say it. And he refused to ever say that Dougie had it. This made me angry. And I stored that anger in a little box marked “nobody in the world understands me.”

I’ve lived in close proximity to autism for my entire life. I’ve taught in “special” programs for “special” children. I have an aunt who works specifically with children on the spectrum. At age 10, I befriended a woman named Rosie who probably had the label. So, when Dougie fell into chronic illness and returned without the language he previously had, without the social skills he previously had, without the spark that the previously had –I had an instant inkling that I was witnessing autism happen.

That’s what got me. I never understood that autism could happen. I only understood that the children I previously worked with were just the way they were because they were born that way (and maybe some of them were). I never had a feeling of needing to “cure” them. I loved them. They glowed. Maybe they learned differently or occasionally hurt themselves – but there was something that made them magnificent. I taught them and worked with them with love and believe that we made a difference together. I never connected inner health with outer behavior/symptoms during my time with them.

But, at home, I was watching my son change. And become sicker and sicker. The behaviors and sensory expressions, like licking everything, seemed to be connected to his illness – not simply some unique character qualities. Dougie rubbed his face against the carpeting, spun in circles, stacked and lined up toys, containers or whatever he could get his hands on. I’d watch him and hold the little angel. And there was no question in my mind whether or not I could help heal his predicament. I knew I could, and I knew he wanted me to.

I felt that if I couldn’t call it autism I couldn’t recover him. But the majority of my early studies on the word only provided superficial reasons for these symptoms. No one was saying that there was a physical, scientific, reason that the body responds with exaggerated sensory activity. I was hearing that these children are “special” and there are so many great teachers and doctors out there who can help them succeed. I was hearing that there is no cure but there would be hope that he could get a “job.”

And, as soon as I began talking to other parents of children with autism, I ran into those who thought I was egotistical, insane, cold, un-accepting and of course a terrible mother and role model for wanting to rid my son of this beautiful illness. Have you heard of autistic children referred to as Indigo children or crystal children? I started to question whether this autism was a gift and if I should just let go of trying to help Dougie heal from it. I never questioned my son’s magic. We always had a very deep intuitive connection. And, I wanted to do right by him. Was this his true path?

But, then I thought… if my son fell and got a gash in his head, I would stop the bleeding. If he had a cold, I would help him heal. If he was sad, I would hold him until he wanted me to stop. If my son was licking the floors and the walls and people in public because that consciously made him happy, and he wasn’t displaying other symptoms of unrest, I would accept him. I would teach him that people do not like to be licked. I would help him find healthier ways of fulfilling this need.

And I tried doing that. But my instinct kept telling me they there was something deeper to this autism. No matter how many physical/cognitive attempts I made to help him stop behavior that was dangerous to him I didn’t seem to be able to succeed that way. No matter how many times I pointed to myself and self “mommy” – he wouldn’t respond.

Along the journey, I saw a life changing video made by a woman with autism that opened my mind about how she perceives the world in a really sensory way. How she communicates with water and air. How even though she couldn’t talk she could write eloquently and felt so much joy about her life.

I could deeply relate to her. I too can see energy in the air. Feel emotion from animals, people and water. I honestly started to question whether or not I had this “autism.” I began remembering spinning in circles as a child, not talking to anyone but my parents, rubbing my face on everything, putting everything in my mouth, crying all the time, lining up pop bottles and biting people in public. They mystery behind autism was beginning to unravel for me.

I’ve never been one to conform and this has never been about conformity for me. It’s been about helping my son become his healthiest self.

Many of his behaviors were not socially acceptable. But I never flinched when taking him out in public. I used to get shoved to the front of the grocery checkout line because of his screaming. I took him to the park nearly every day where he would insist on banging the metal slide pole to hear the sound. And I never felt the need to say “oh he has autism” to explain us.

I needed the word only for me. I needed the word to help heal him – or so I thought. And I allowed him to be evaluated and labeled by the school system – a long and painful process, so I could get my answer. And we accepted the label because we were promised help if we did so. We interviewed the Chicago Public School staff who performed the evaluation. We explained that we would completely recover our son from his illness. We explained that we would accept a label if it would bring us help that reflected our beliefs. We explained that although we generally don’t accept the idea of labeling a child, we would take this one if it meant that Dougie could get real help. Help that brought us closer to recovery. And most of all, we didn’t want him pigeonholed because of it. We didn’t want the word spoken around him.

I signed a piece of paper agreeing that my son had “autism.” I did it against my deepest intuition. My husband wouldn’t sign it. In the instant that I crossed the last “t” on McDermott I regretted it. My son did not have autism as defined by the school system so they could never help recover him. They could only offer services with the notion that he had speech and occupational difficulties. They couldn’t get the root cause of those issues because they did not have the tools.

Then I began to hate autism even more because of the way the school system made extra money from it. I hated it because it put a cloud over my son at his school… and the word was repeated over and over and over. I hated it because no one believed that we could end its destruction on Dougie’s life.

Early on, I began to understand Dougie’s condition as a toxic manifestation. As I studied I learned where those toxins came from and as many of you know, we have brought him into a very healthy light.

But I continued to struggle with what to do with this label that kept coming up. All of the negative comments I continue to get from people who call me an autism hijacker. And, the sick children out there whose parents struggle like I did over how to handle a disorder that is only defined in social, sensory and outward symptoms.

Finally, last summer I really embraced shamanism and studied with some amazing spiritual teachers. Dougie’s and my recovery through raw foods helped open both of our bodies for deeper healing. But, food could not bring us to the level of peace we now have.

Shamanic journeying, meditation, chakra balancing though sound and movement, and touch therapies like reiki all helped me realize the insignificance of labels. But most of all they helped me let go of my need to label our situation.

The autism label, as widely defined never described how my husband and I see our son. My husband knew this all along. We create our own lives. We manifest our desires. We are completely responsible.

By believing that my son does not have “autism,” but merely an overload of toxins that continue to melt away I am defining it more scientifically because this is actually what he has. And, by understanding how these toxins can be released energetically helps add more valuable tools to our healing regime.

As time goes on, I continue to practice shamanism and reiki and I continue to gain deeper acceptance for who my son really is.

I have realized that yes, this is about acceptance. Yes this was supposed to happen. Yes my child does have a magical reason for being here and for displaying these behaviors. There is something very intuitive about him. He can use touch to heal me when I am in pain.

I believe he was put here to help us all heal. Because we were able to heal him against the odds, I know that anything is possible. I don’t know if I realized that before. Letting go of autism has helped me let go of my addiction to all labels. Now I can enjoy life for what it is. I can enjoy the feeling of water on my skin and wind in my hair without having to define it. I am more relaxed thanks to my little angel.

It just so happens that as we continue to physically heal and release toxins though diet and energy healing, Dougie’s speech and communication becomes more and more typical. But his magic and his power also increase. I would love and adore my son if he never said a word to me. If he never looked at me. But, I couldn’t live with myself if I didn’t lead him in the direction for complete wellness and fulfillment.

Dougie is not autism. Dougie is Dougie. He’s my magical little spunkmuffin – a glimpse into the heavens, and my strongest role model.

5 responses to “Letting Go of the autism Label

  1. brokeharvardgrad

    The word autism may describe a series of symptoms, a constellation of sensory issues, but it doesn’t define the person. Getting help for children living with autism can be a very trying experience. In addition to that, not many people know exactly what works for children living with autism, and there is no standardized model to follow. In a way, this is good, because parents have choices, but it doesn’t help when parents can’t get the help they need. How does the healing practice you use help your son? Is it something other parents could try?

  2. Hi,
    Thanks for sharing!

    My son has recovered from what most would label as autism. He communicates healthily and no longer displays all of those classic symptoms like hand flapping, toe walking, head banging, meltdowns, lack of social contact and eye contact, staring into space, difficult sensory issues etc.

    I understand what my son has to be an overload of toxicity that is succesfully melting away by using proper nutrition (Body Ecology and Raw foods) energetic and sensory therapies to name a few.

    he is still going through periods of releasing posion, and each day we discover more and more of the beauty within. But, people who did not know he was labeled in the first place would have no idea.

    Yes other parents can try and many do successfully.

    Look at http://www.BEDROKCOMMUNITY.org
    those of us who understand that all disease is about peeling away layers of toxic junk (metals, parasites and other pollutants, do so and find amazing results.

    Let me know if there is any way I can help u.
    also visit my site healartfully.com which is solely dedicated to autism recovery

  3. You are an amazing parent for not giving up on Dougie. I am a woman who found out I have aspergers syndrome at 28 years old and doing battle with it on my own. I wish I had help when I was growing up. Your son is so lucky to have a mother warrior for a mother. I wish you much success in your journey to help your son.

  4. Thank You so much Cheryl! Many blissings on your journey as well. meet me over at BlissedLife.com where we update everything now

  5. Thank you for sharing this with us. Its gives me much hope for my daughter and my family.

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