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Life as an Extreme Sport

SierraAnsley[1] By Sierra Ansley

One of the things you learn quickly when you have a child on the spectrum is that ASD takes no breaks. It's 24/7, including evenings and weekends. You can't put it on hold for a while to catch up on sleep or get the house clean. It's relentless. The cruelty of this is that no one needs a break more than the parent of a child on the spectrum, yet no one has a harder time getting one. I am relatively lucky as my son is so mildly affected. Our daily lives have never been as challenging as they can be for families whose children have full-criteria autism.

However, I have been on a ride for the past nearly 5 years that just hasn't let me off. In order to stay sane under circumstances as these it is necessary to find some sort of escape, however brief or delusional. Eating treats late at night helped for awhile, although this diminished in effectiveness when I began to follow the special diets as well. Even on the SCD I do still find ways of indulging such as peanut butter with honey, but it just isn't the same as a big dish of chocolate ice cream. Getting lost on the Internet late at night has been a favorite of mine, and judging by the level of company I find there, a common favorite for others as well.

Every now and then I have found time to watch TV, or better yet a movie, that is in no way related to the spectrum, special diets, the toxicity of our environment, or the degradation of our food supply. These times have been few and far between but very sustaining. Recently, my husband brought a DVD home from the library about extreme sports. Wonderful, I thought- what an escape. As I watched the beautifully filmed images of people climbing glaciers, surfing 35-foot waves, and being dropped off by helicopter to ski down sheer mountain cliffs, I thought that what they were doing was probably about as distant from my daily routine as I could imagine. I reveled in finding such a complete escape from the world of our everyday challenges.

As the film progressed, we began to hear interviews with the athletes. They explained as best they could why they choose to do these things, why they are drawn to challenge themselves in such ways. Only by leaving behind the everyday world, some explained, could they really find out about themselves. By taking on increasingly more challenging goals they discovered what they were capable of- they found freedom in knowing that they had as yet not met their own limits. Some talked about how they learn self-reliance, problem solving skills, and gain a deeper understanding of human nature, and how these are things they bring back with them to their everyday lives.

Several athletes talked about how embarking on an adventure for them was like stepping out of time- they would go to a place so far removed from our normal experience, both physically and mentally, and what they experienced there had the power to transform them. They returned from this place with a sense of themselves, how they fit into the world, and what they were able to do that is just not attainable without such extreme experiences. Suddenly the film was no longer about something so removed from my life, I knew exactly what they were talking about. If you are fond of reading ASD blogs, you have probably read many accounts like the above. Parent X was just living a normal life- maybe going to school, maybe working, maybe already raising neurotypical children, and then suddenly they find themselves living a different kind of extreme sport.

I've heard a number of other parents describe the time following a diagnosis of autism as feeling like time had stopped, or feeling as if they had been taken somewhere outside of time. Like many families our lives were consumed by my son's challenges and what to do to help him. Recently we have begun to re-emerge from the isolation and indeed it does feel that time has continued for others in a way that we have not been part of. It's as though we had been transported away to some strange place and have returned transformed. Living through this has fundamentally changed me and our family as a whole. When my son was first struggling, I remember feeling sorry for him that he had a mother who just didn't have it in her to fight for him the way he needed. I had no idea what I was capable of until I was challenged in such a way as this. I guess that's the silver lining in all of this- I never would have chosen to be pushed out of an airplane (which is what this felt like), but when you are falling the only thing left to do is to learn how to fly.

I will leave you with a quote that we heard at the beginning of the film:

"Somewhere, out there, in the oceans and the mountains, is a place where time does not exist. When we get to that place, there is a voice in us that challenges us to go one step further. And those who find that place, and then return to the presence of others, become the speakers. They are the messengers"

Well, I would add that for some people that place can be found right here in our own homes. I have been to that place, and I have a message

Sierra Ansley is the mother of two children, one of which has Hyperlexia. He is now close to recovery thanks to dietary and biomedical intervention.

Comments

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Shoukat khan

Hi Sierra Ansley,

Its my 2nd time sharing you articles with my friends great work!

Thanks

William V. Dickey

Great article.

Sierra

I just want to say how much I appreciate all the support and kind words from people in response to this article. Although the autism world is where my family seems to fit in most, we tend to feel like interlopers because Hyperlexia is so little known and little understood. I would love to see more awareness of Hyperlexia as a spectrum disorder, and yes Jack I'd LOVE to see it as a standalone dx! It was only when we realized that our son was on the spectrum that we were able to get him the help that he needed, and I would love for new families just coming to this to get this information and help right away instead of with the long delay that we had.

Jack R.

And like an extreme sport sometimes you've pushed so far into the wilderness that turning back isn't an option. All you can do is push forward even though you don't think you can and even though you don't know if you're on the right path or where it is going.

And good to see the hyperlex board represented. Maybe we can launch a campaign for a stand-alone diagnosis of hyperlexia here on AoA.

Sarah

Your description of Life as an Extreme sport captures it beautifully...

After my sons dx I use to have a recurrent dream where I would see myself alone huddled, knees drawn to my chin high up on a precipice with cliffs that dropped off thousand feet on all sides. I was frozen, couldn't move, trapped, vulnerable, heart pounding. How the h--- do I get off of here??

It just seems in life sometimes we're put in impossible circumstances but it's comforting to know we have a strong network. Yes, being an autism parent is very much like an extreme sport.

alison macneil

Dear Sierra, I read your post at 5:30am, the time when my extreme sport version of parenting autism lets out of the gate and I've been thinking about it all day. Your words struck a chord with me. I've been thinking a lot about the 'recovery' of a family with a child harmed by vaccines lately. It is an extreme choice to decide to go forward with grace and humor and energy after something truly awful has happened. But there is incredible freedom in that. The old rules no longer apply. The new rules are based only on the fundamental truths this new family holds dear. Priorities shift in a good way. I can remember the intersection I sat in, in my car, as this occurred to me, a year into the diagnosis. The moment was a lightening flash; driving both kids to school, a very unspecial morning.It hit me 'one of the worst things has happened and we are going to live through that and into a new life'. I'd love to have my son back pre-vaccine injury but I don't want my self back prior to this hell. I was a bit insufferable prior to Autism. Sure I'd been through some tough stuff, real tough stuff actually. But I had never had my world split open and had to grab myself by the guts to climb out. I am now a messenger. I have been to awful and hell and had to reckon with the fact that my family has been there because of pharmaceutical greed and inept medical bureaucracy. No one or nothing of any importance or value injured my son or derailed my family but by God I will make importance out of it. I am a messenger going forward as my child triumphs terrible injuries and my family risks hope and optimism and justice every day. Thank you, Sierra

Penny

I related to an "extreme sport" moment on a TV show, too, Sierra. When my child w/ autism was little (two or three years old, probably, so this was seven or eight years ago), my husband and I were watching Crocodile Hunter Steve Irwin teach his wife, Terri, how to wrangle crocodiles. They began on little freshwater alligators, if I recall correctly. Anyway, I remember looking at my husband and telling him, "I could TOTALLY do that! After wrestling w/ a toddler w/ autism day after day, that looks like a piece of cake!"

Cherry Sperlin Misra

Thankyou Sierra and all others here who have written so meaningfully. Could we say :" Autism means you'll never be the same " ? I recall a party at my home in which the new wife of a close friend asked a doctor if vaccines were safe- and I, the hostess was SOOOO embarassed by this "stupid" question. But I kept that in my mind and one day when I opened a Mothering magazine and saw the headline "Mercury in Your Vaccines" - My life changed forever. Everyone- Dont stop telling people about your experiences even if it seems futile at times. So many of those people have childen or grandchildren who have been harmed by vaccines that have caused their asthma, obsessive compulsive disorder, dyslexia, hyperactivity or allergies. One of the useful ways to get people thinking about vaccines, is to tell them that childrens' immune systems are depressed by the MMR vaccine. Often the parent will get a surprised look on the face and say "My child had diarrhea for two months" or "That's when my child got Thrombocytopenia(or some other unusual disorder)"

Barbie Hines

Wow...this was great. Thank you!

Jimsomnia

Back in 1998 I was driving home late at night and heard a report on the radio about parents of kids with autism who were injecting their kids with Secretin, a serum derived from a pig's pancreas. I remember thinking it was about the strangest thing I had ever heard, and I wondered why this odd story had grabbed my attention like it did. At the time, I knew nothing about autism or "alternative medicine."
Ten years later, I am trying to tell anyone who will listen what we have been through with our 12 year old son: Special diets, B12 injections, glutathione boosts, antifungal meds, cranio-sacral therapy, hyperbaric chambers, you name it...yes, even Secretin.
He's not fully recovered from being run over by the autism bus, but he's come back much more than the medical "experts" told us was possible.
My wife and I and his older brother are different people. We're better people.
We're smarter, braver, more tolerant, and closer than we would have been.
Thanks, Sierra, for reminding us.

K Fuller Yuba City

Thank you for saying it so beautifully. I did not think that I had what it took to have a child with Autism. I found out I do.
I am the little engine that could. I think I can ,I think I can, I know I can, I know I can.
Many have told us that we cant make our whole lives about Autism, well how can I not?
Yes I can, and Yes my child can be better
I know I can.

Ros

My Son is Nineteen the stress never ends.
There are so many studies on Autism currently be done. We need to keep up the pressure on Congress to pass the Autism Bill and fund Autism Reaesrach.
Scientist need our support so they have help Autistic people.

Kelli Ann Davis

"...but when you are falling the only thing left to do is to learn how to fly."

Beautiful and powerful.

I finally feel "free" for the first time since my son's diagnosis almost 14 years ago.

Autism has a way of "consuming" us -- if we let it. And for 8 years, I was "consumed" while life was passing me by. No more.

I refuse to let "autism" change me or define my life -- instead, I will change "autism" by living my life the way it was meant to be lived.

Finally, I know what it's like to really fly...with balance, purpose, and a new vision.

Kelli

Beautifully said

Sierra, thanks for this article. You have described the journey and the feelings it brings beautifully. This is a very honest and accurate account of what we go through. There is nothing like facing an extreme challenge in complete and utter isolation to get in touch with your inner self. Surprisingly you come out loving yourself as never before, just because you get to know who you really are.

And you are right about coming out of isolation as well. The universe timed it beautifully by bringing all my old friends out of the woodwork (and not all because of FB). There is nothing comparable to reconnecting with old friends who can relate to you on *every* level seamlessly, and you then discover what made them your friends in the first place so many years ago. It is magical.

Pamela

Sierra, thank you for this opportunity for a moment of self reflection.

The analogy perfectly puts into to words what I have tried to describe to others in my drive to become an autism and vaccine reform advocate.

For almost 3 years I was completely immersed in the recovery of my daughter. As that recovery has been almost completely achieved (minor gut cycle and sensory issues left to overcome) I found myself with this overwhelming need to share what I have SEEN with the world; to mentor parents trying to understand the struggles they are experiencing; to help them get started on the path to treatment and to effect change amongst the political and medical establishments because I know and I have seen.

Before autism I always felt insignificant in terms of my life's meaning in this world. I was a professionally successful person who could make my way quite effectively but I didn't understand my meaning in it all.

In the wilderness (I love this analogy) of our autism journey I learned so much about myself in terms of my open mindedness; my insightfulness; my motherly intuition; my ability to take control of my life and the decisions I make for my children and my responsibilities, abilities and limitations as a parent. In some of these things I liked what I learned about myself... and in some things I didn't. But I grew and I learned more about "me" than I would ever have known.

As I emerged from the wilderness with my daughter I had an overwhelming sense that I had to share what I have learned and that I couldn't just walk away.

As a result of this "extreme sport" my marriage has grown stronger, our lifestyle has changed remarkably; I am a better parent; my children are healthier; I have made beautiful lifelong friendships with people of depth who I admire greatly and on so many levels I have found greater purpose to my life.


Benedetta Stilwell

Hyperlexia? "sigh" Yet another new word to me that describes a condition that is just too familiar.

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