Heroes, Hope Killers and Professional Defeatists
By Katie Wright
I was recently inspired by a beautiful book entitled “Walking Papers” by, Franceso Clark, founder of Clark’s Botanicals. At the age of just 24, Clark broke his neck in a diving accident and was paralyzed front the neck down. Very much like the “Welcome to Holland” story, Clark was advised to accept the paralysis and “move on” with his “different” life. Doctors and therapists told him in effect, sure being paralyzed is tough but you’ll get used to it. Deftly, Clark responded to his doctor, “how about you get used to sitting in this chair the rest of your life. ‘Move on’ with my life, why don’t you move out of my way.”
Clark was determined that he could do better than accepting the grim prognosis he was given. Franceso actively started researching all possible spinal cord treatments and interventions on the (that’s right!) that treacherous internet. Franceso’s spinal cord doctors, much like our friends in mainstream autism research, abhorred such self-empowerment and education. Surely Clark would be victimized by those “snake oil salesmen” who stalk the internet preying on all the dumb and gullible disabled people and their families. It is obvious we are all sitting ducks, waiting to be exploitive, too stupid for our own good.
Clark’s father is a physician and his mother a brilliant scientist. Franceso hypothesizes that they were more open to alternative interventions because his father went to medical school in Europe and his mother is from Italy. Clark was taken aback when his doctors and therapists actively discouraged him from researching his injury and avoid “getting his hopes up.” Didn’t he know he would never walk again, accept it already, was their message. Franceso was astonished at the vehemence of the medical community’s resistance to trying anything new or funding alternative intervention research. Hmm…boy, that sounds familiar.
Christopher Reeve became Clark’s hero for his unrelenting advocacy for innovative spinal cord research and determination to hurry science. Reeve loved to joke about neurologists. How many neurologists does it take to change a light bulb? Who knows, first they have to release an RFA. Reeve argued that by investing aggressively in intervention research, more people could live productive independent lives, saving the taxpayers so much money in the long term. Again, so familiar! As with autism there are so few evidence based spinal cord injury treatments, we cannot afford to abandon those not making progress, we must support scientists with new ideas. Complete paralysis is so devastating and so expensive, isn’t it foolish not to put everything on the table and invest in exciting innovative science? Ah, Clark was naïve; he did not yet understand that “innovative,” “new,” “exciting intervention possibilities” and “new generation of scientists” are all verboten adjectives and ideas. No, we must accept the status quo and keep funding the same people with the same stale ideas, over and over again- the more arcane and academic the research the better! Clark sure had a lot to learn.
Instead with the support of an amazing family, Clark pursued all kinds of groundbreaking interventions. When his therapists told Franceso he should be content with learning how to roll off a therapy mat, Clark configured an upside down bicycle in his garage to strengthen his weak core and leg muscles. People with spinal cord injuries have poor circulation, are unable to perspire, resulting in blocked pores, eczema, infectious bed sores and all over bad skin. After dermatologists’ lotions made Clark’s sensitive skin worse, he was advised to accept the situation and “move on.” I always want to ask- move where? Anyways, Clark and his family created an organic skin care company instead. Their products contain no steroids, artificial preservatives, parabens, etc…Despite his doctor’s insistence that “alternative” stuff was a waste of time and money, the Clark’s Botanicals lotions really worked. The eczema and rosacea were gone. How great that the one part of his body he could truly feel, his face, was no longer covered in sores and rashes.
Apparently Clark was unaware of the true and hidden dangers of organic ingredients and how they exploit and endanger people. Good thing Dr. Susan Hyman did not get to him!
After years of research, Clark went to China for stem cell surgery and left with new feeling in his trunk and arms. At the end of the book Clark was picking up a French fry with his fingers. Franceso would be the first to say that none of this progress came easy and yes, he is disappointed to still be in a wheelchair and frustrated at the anemic pace of spinal cord research. However, if he had listened to the hope killing doctors and therapists Clark might still be on a respirator, barely able to speak, covered in bed sores, his legs and arms wasting away, unable to move a muscle. That should teach Clark that his doctors know best!
The parallels between the worlds of autism research and in “Walking Papers” are humorous and remarkable. The fear of trying anything new, resistance to change and refusal to listen to stakeholders is an all too common phenomenon in the research world. These archaic belief systems are as outdated as “women don’t belong in the workplace,” or “fathers shouldn’t be in the delivery room.”
The saddest part is when people within the community fight interventions that are helping others in the same community. Rather than focusing their attentions on the nightmare that is the Judge Rothenberg School for the disabled, schools and residences that abuse their ASD students, insurance re-imbursement or providing actual help to ASD families in need, defeatist advocacy groups are obsessed with the idea they have accepted defeat and so should you. The idea that other people are trying something new and having success terrifies them and makes them feel guilty. In turn they project this fear into childish and churlish proclamations that alternative interventions “make parents feel guilty for not trying them.” Rather than focusing their energies on pushing the science forward, they perseverate on their desire to have only ABA, genetic and brain research studied, all the while battling innovative ideas as if their lives depended on it. It reminds me of people without health care, without jobs, without access to a decent education screaming and marching on the capital to outlaw flag burning. Wouldn’t their energies be better spent elsewhere?
We see the same problem within the research community. Early intervention, the genome, Fragile X research, brain imaging, eye gazing are all big business. These subjects have made a lot of money for some institutions. Safe, academic and incremental work gets rewarded with big grants, their studies get published in prestigious journals, the investigators’ labs grow, they get exciting new machinery or a department chair. Things are going great for this community, why change a thing? These academics most frequently interact with like-minded academics, rarely do they speak in front of the parent community nor do they express much interest in the bigger picture of autism. Instead these researchers embrace hope killing efforts, emanating from their fears of loss of relevance and power: GI research is “too risky,” dietary interventions are “dangerous,” “regression is rare,” “there is no autism epidemic,” “what is PANDAS?” Places like CHOP and Childrens Hospital of Boston fall victim to this group think and hunker down in genetics, fearful of change.
Conversely parents and doctors in the progressive world of autism research and interventions are constantly having their beliefs challenged. It can be annoying but it is a healthy process that prevents one from calcifying. In exchange for having an open mind or an unpopular opinion comes a certain amount of humility. After hearing John Elder Robinson speak about TMS, I thought wow, there really is something there, I was wrong, you just never know. Like Franceso Clark we cannot afford to be afraid to expose ourselves to new and different ideas or admit when we are wrong. Right now the biggest mistake would be to allow fear of change and the paralysis of the professional defeatist movement to highjack innovative science. Christopher Reeve and Franceso Clark kept hoping, kept researching, kept trying and continued progressing despite hope killers urging them to give up and “move on” with their lives. So to my fellow parents reading this keep using the internet! Keep asking questions, keep advocating for meaningful stakeholder representation. Continue to support organizations that embrace progressive research. All of our children are benefitting from your efforts. Hope defeats fear every time.
Katie Wright is a Contributing Editor for Age of Autism.
It was my pleasure. You are very wonderful to talk to! :) I would try some valerian root, or some melatonin if you are looking for something a little lighter in helping with sleep. They are supplements. All though I must admit, Valerian root does smell like poo...
Posted by: Theodora Trudorn | July 16, 2010 at 12:08 PM
Theodora, I actually took the leap and started Ginkgo caps yesterday. He didn't sleep at ALL last night, which may mean it's doing something. I only gave a tiny sprinkle but he is really sensitive. I've tried it before as a liquid but didn't see good results, probably because of the alchohol. His long term memory is great but short term is where the issues lie, as well as recall. Thanks for being so informative in your responses!!
Posted by: Allison Chapman | July 15, 2010 at 05:35 PM
I take Ginko Biloboa in capsule form. And Theresa, that is AWESOME!! I was taking it to support healthy brain fuction and support better long term and short term memory!!
Who knew it would help with mercury?! No wonder I have seen such improvements since using it!!
If anyone is wondering, you can get this in capsule form in any health food shop.
Along with Ginko Biloboa and St. John's Wort I also use Cod Liver Oil, Fish Oil, Calcuim, a Multi B Vitamin, Vitamin C, and I take Valerian Root before I go to bed.
I also use loose leaf herbs for the spasms I have in my legs that use to constant pain. I make my own herbal tea using Chamomile, Feverfew Tops, White Willow Bark, and dried Jasmine flowers. It has completely taken away the pain.
Feverfew Tops directly fights against the constant spasms. (And they use to be bad!! My better half used to say that when my body went into spasm *sometimes it would travel up my legs up into my spine and into my arms* that it looked like I was having a conscious siezure!)
Chamomile takes out the stress and anxiety. Calms me and gives me a sense of well being. The very smell of it has an effect. :)
White Willow Bark deals with the pain caused by the spasms, which before never ever left me. It combats against the everyday pain and residue pain from past spasms.
Dried Jasmine flowers smell great, and are great aromatherapy to add to the tea. And strangely, I like what it adds to the taste.
I have made this for my guy (he has AS to and one day every month, he goes into multiple grand maul siezures, strangely like Darian's man does)and this helps afterwards with the strained muscles and residue spasms he might have. It also helps calm activity i his brain down and relaxes him so he doesn't start having more durring the night.
Thank all of you here for your kind words. I enjoy being on a site with so many moms! :) You all are so nice and kind to me! I'm use to seeing people rip each other's heads off about this debate. This is a nice change!!
And once having been on the other side not all that long ago, I still tried to be respectful to everyone. I am glad to see that modeled here.
Posted by: Theodora Trudorn | July 15, 2010 at 10:34 AM
I find it absolutely appalling that many dentists are still using mercury containing "amalgams" for fillings. What is wrong is with our government? Why can't they even stop that? Why doesn't government act in our best interest?
http://usaviews.com/2009/08/28/corruption-at-the-fda-over-dental-amalgam/
Ditto for fluoridation of the public water supply and toothpaste.
With a steady diet of mercury, fluoride, aluminum, and non-human DNA in our food, water, and vaccine schedules, is it any wonder that there is an epidemic of disease?
http://www.thewealthydentist.com/SurveyResults/069-Lead-Mercury-Bisphenol-Fluoride.htm
Posted by: patrons99 | July 14, 2010 at 01:02 PM
Hi Theodora and Allison-
Just seeing your comments about Ginkgo biloba. Had to post as it seemed related-
Phytother Res. 2007 Jan;21(1):26-31.
Protective effects of Ginkgo biloba extract against mercury(II)-induced cardiovascular oxidative damage in rats.
Tunali-Akbay T, Sener G, Salvarli H, Sehirli O, Yarat A.
School of Dentistry, Department of Biochemistry, Marmara University, Turkey. [email protected]
Abstract
This study was designed to determine the possible protective effect of Ginkgo biloba extract (EGb) against Hg II-induced oxidative damage and also thromboplastic activity in the aorta and heart tissues. Wistar albino rats of either sex (200-250 g) were divided into four groups. Rats were injected intraperitoneally with (1) control (C) group: 0.9% NaCl; (2) EGb group: Ginkgo biloba extract (Abdi Ibrahim Pharmaceutical Company, Istanbul, Turkey) at a dose of 50 mg/kg/day; (3) Hg group: a single dose of 5 mg/kg mercuric chloride (HgCl(2)); and (4) Hg + EGb group: First day EGb at a dose of 50 mg/kg/day, i.p., 1 hour after HgCl(2) (5 mg/kg) injection; following four days EGb at a dose 50 mg/kg/day, i.p. After decapitation of the rats, trunk blood was obtained and serum tumor necrosis factor-alpha (TNF-alpha), lactate dehydrogenase (LDH) activity, and malondialdehyde (MDA) and glutathione (GSH) levels were analysed. In the aorta and heart tissues total protein, MDA, GSH levels and thromboplastic activity were determined. The results revealed that HgCl(2) induced oxidative tissue damage, as evidenced by increases in MDA levels and decreased GSH levels both in serum and tissue samples. Thromboplastic activity was increased significantly following Hg administration, which verifies the cardiotoxic effects of HgCl(2). Serum LDH and TNF-alpha were elevated in the Hg group compared with the control group. Since EGb treatment reversed these responses, it seems likely that Ginkgo biloba extract can protect the cardiovascular tissues against HgCl(2)-induced oxidative damage.
Food Chem Toxicol. 2007 Apr;45(4):543-50. Epub 2006 Aug 30.
Ginkgo biloba extract protects against mercury(II)-induced oxidative tissue damage in rats.
Sener G, Sehirli O, Tozan A, Velioğlu-Ovunç A, Gedik N, Omurtag GZ.
Marmara University, School of Pharmacy, Department of Pharmacology, Istanbul, Turkey. [email protected]
Abstract
Mercury(II) is a highly toxic metal which induces oxidative stress in the body. In this study we aimed to investigate the possible protective effect of Ginkgo biloba (EGb), an antioxidant agent, against experimental mercury toxicity in rat model. Following a single dose of 5mg/kg mercuric chloride (HgCl(2); Hg group) either saline or EGb (150mg/kg) was administered for 5days. After decapitation of the rats trunk blood was obtained and the tissue samples from the brain, lung, liver, and kidney were taken for the determination of malondialdehyde (MDA) and glutathione (GSH) levels, myeloperoxidase (MPO) activity and collagen contents. Formation of reactive oxygen species in the tissue samples was monitored by chemiluminescence (CL) technique. BUN, creatinin, ALT, and AST levels and tumor necrosis factor-alpha (TNF-alpha) and lactate dehydrogenase (LDH) activity were assayed in serum samples. The results revealed that HgCl(2) induced oxidative damage caused significant decrease in GSH level, significant increase in MDA level, MPO activity and collagen content of the tissues. Treatment of rats with EGb significantly increased the GSH level and decreased the MDA level, MPO activity, and collagen contents. Similarly, serum ALT, AST and BUN levels, as well as LDH and TNF-alpha, were elevated in the Hg group as compared to control group. On the other hand, EGb treatment reversed all these biochemical indices. Our results implicate that mercury-induced oxidative damage in brain, lung, liver, and kidney tissues protected by G. biloba extract, with its antioxidant effects.
Posted by: Teresa Conrick | July 14, 2010 at 11:32 AM
Thank you Theodora! I really appreciate you taking the time. What type of Ginko do you use? Liquid? with or without alcohol? Does it specifically help short term or long term memory or both? Are St. Johns Wart and Ginko the only herbs you are taking?
You are not the 1st high functioning person to tell me they trained themselves to handle eye contact issues. Very interesting, although a little difficult for me to try and explain the "how" to my son due to his language, but I'll try. The other person told me he trained himself to look rapidily from one eye to the other until it was so rapid he no longer realized he was doing it anymore. He is now so high functioning (and in college) I would not ever pick up a spectrum issue. You both give me hope..
Thank you so much again!
Posted by: Allison Chapman | July 14, 2010 at 10:33 AM
Thank you Twyla! It has been a long journey and it's not over yet! I apprecaite your encouraging words. I just don't ike these people who keep telling us to give up, there is no hope. Accept it, you will never be able to be like everyone else. Horse Sh85!!
We can do anything we set our minds too!! No one can tell anyone what they can or can not accomplish!! I don't just act like my limitations are a 'difference' and accept defeat. It's not a difference! Hair color is a difference!! Screaming in horor from pastel yellow is a problem!! Come on people!!
As my dad use to say, logic dictates. And another one of his favorites is 'if it works, it is true.'
The supplementsdo work, as does the diet. And a whole lot of mom's social training! :) Speaking from a daughter's point of view, let me tell you all something. We enjoy watching you kick A$$ and take down names in this fight!
Posted by: Theodora Trudorn | July 14, 2010 at 09:56 AM
Thanks so much, Theodora, for sharing some of your story! Congrats on all that you have figured out and discovered, and all the very best to you!
Posted by: Twyla | July 14, 2010 at 02:49 AM
If I had listened to my neurologist my son would not be well or verbal now.
He flat out told me there was no science to the GFCF diet as children marched out of his office with sample bags of ADHD drugs.
He completely missed a Chiari brain malformation on my child's MRI scrawling "nothing abnormal" on the bottom of the MRI report.
So very glad we took the road less traveled.
Our son is a million times better now.
Oh the dreaded internet...it saved my kid from being chemically restrained by our local neurologist.
Life is good now, our son verbal and no longer a flight risk. While not very "scientific" my kid is talking and that is all the science I need.
Posted by: Autismisreversible | July 14, 2010 at 02:12 AM
It would be my pleasure. I give alot of the credit to the way my mom raised me. I was never aloud to use my diagnoses as an excuse for why I couldn't do soemthing. I would have to find another way to do something if the regular way wasn't working for me. She woldn't allow me to jusa say I can't and then walk away.
My aspie obessessions have guided me down the homepathy path. I was interested in the old herbal remedies used by the old wise women in Medieval Europe and why no one studied what they used, as it seemed to me they had sucess using such methods back then.
And of course, studying it, I had to try it!! :) Especially after spending the last 4 years of my life in constant pain and doctor after doctor after doctor kept telling me there was nothing I could do. I'm sorry but I was not going to accept being in pain for the rest of my life! lol!
My metablism is ultra sensitive and on constant hyperdrive. I would never be able to hold down nutrients. So to slow things down, I first out took out all forms of caffiene. Which took out all my jitteriness and most of my stemming. I still had issues with the dropping weight, though how fast it would drop had slowed down.
Found out it had something to do with how my body processes artifical sugar. It becomes near caffiene like in how it speeds up my body. I know, it's weird!! So I went off all sugar except natural sugar (NO ONE TAKES ME STRAWBERRIES AWAY!! lol!!) And the change has been dramatic!!
It also helped going off Aderal, which the doctors have had me on since 2nd grade! I instead switched over to using what my mom calls my brain supplements (LOL), Ginko Bilaboa which helps with memory and supports healthy brain fuction. Works like a charm!
I use other viatmins for low circluatlion issues (I hear that is common on the Spectrum) and supplements. Fish Oil, Cod Liver Oil, a multi-vitamin, A multi-B viatmin supplement and that does quite a bit!
I also went off my anti-depressent medicine and switched to St. John's wart, which I take when I get home from work.
I've been on these since '04 and they have done wonders!! They have helped me deal with social issues as dealing with the anxiety was half the battle and so I was able to go to college!! :)
Alot of things I over came in the social issues because I had to. It wasn't an option to expect society to "accept" me. First of all I never saw the logic to that. If I'm the minority, shouldn't I being trying to adapt to them?
I found ways around things that were uncomfortable such as eye contact by creating what I call tricks of the trade. I look someone right between the eyes instead of directly in them. I still see thier eyes but I am not focussing so hard on when I need to look away, etc. Takes the nerves out of it.
When presenting and speaking to a crowd, I pick several places just above thier heads in the wall behind them, and move my eyes accordingly to those places. Looks like I am looking at and scanning the crowd! :)
I learned these tricks in highschool. I was in choir and band and did alot of competitions, so learning how to do this was a necessity if I wanted to be able to compete with my friends. And I wasn't going to let autism get in the way of my competive streak!!
I also had a warriar momma in my corner. She would support my research and would throw in some pointers. She still does. Because of her and this site I was able to find out about Yaz and the fact it might have caused my current spasm condition with my legs.
I know its not an article, but I'll get there, lol! Thank you for your kind words Allison!! My greatest help has come from my faith. My strength, my help, and my hope come from him. And when I am weighed down I remember that God never gives me anything that he does not think I can bare up under.
Posted by: Theodora Trudorn | July 13, 2010 at 12:46 PM
Theodora, I would be very interested as a parent to read a piece written by you to tell us what has helped what. And how each herbal remedy or diet has brought about your abilities to have been able to accomplish what all of those naysayers said you couldn't. Congrats!! You are a huge motivator for hope!
I'm dying to pick the brains of those who have found the success to make them feel better because it's clear that the government or science will never do the studies that lead to these kinds of answers. We need you. We need your insight.
BTW, I would also love it if Jake Crosby would write a similar piece. :)
Posted by: Allison Chapman | July 13, 2010 at 11:10 AM
Hey Katie great peice of work very accurate description of the nay sayers, charlatans and defeatist and very inspiring to the daring parents that are blazing a medical trail through uncharted and potetially dangerous waters. Most of the hope killers do not realize that we are in conflicted state of quiet and obstreperous desperation for are children. We are fighting for our childrens very lives daily and even when we sleep we think of curing autism for our child and everyone elses too.
This web site is truly a gift for autism parents to release, refresh, review, reveal and reload. Thank You Katie for helping me reload.
I pray to God Almighty that one day I can reveal something good and useful and pratical to all of you and your afflicted family members in this community.
Posted by: WILLIE | July 13, 2010 at 01:58 AM
Dear Sally,
I am truly thrilled that your son has been helped by medication and that you have high hopes for the work of Dr. Mark Bear. I can understand why as his work is all about treating Fragile X, that is great for your family. Autism Speaks and the NIH have recently been big financial supporters of FX work.
FX kids make up approx less than 5% of all ASD cases so it isn't surprising that there has been less $ spent on the condition than traditional autism. I know supporters of Bear's work argue that results will be applicable for all ASD people but reasonable people can disagree about that. I just do not see the overlap for medically affected, environmentally triggered kids. While I am happy for your son, I am greatly frustrated w/ organizations inability/fear of funding research into studying and treating my sons' "core symptoms" now.
I fear FX research has garnered such tremendous support because it is a distinctly genetic disorder, a safe subject that scientists like to study- devoid of controversy. No child develops typically without FX and then suddenly acquires FX after a series of vaccines and febrile seizures. I would gladly participate in ANY research relating to my son's form of autism but almost no one is studying it. Believe me, we never get asked to participate in clinical trials for his symptoms because almost none is conducted.
Sally my son had everything taken away from him- everything- and I am sure you can understand as a parent I want researchers to study this phenomena. I wish you all the success in the world but I think we are talking about 2 very different forms of autism that will benefit from very different research investments.
Posted by: Katie Wright | July 13, 2010 at 12:34 AM
This article had a medicinal effect on me -- just the antidote for a stoooopid barf-fest of a blog column I had the misfortune of reading this morning. Danke schoen!
Posted by: nhokkanen | July 12, 2010 at 11:49 PM
There is an important inaccuracy in the article: 'the fear of trying anything new' is a modern development. A century ago, new ideas and challenges to long held assumptions were coming to the fore at the start of the heyday of science; work such as general relativity, wave / particle duality, and quantum mechanics, turned conventional thinking on its head. Jim Watson and Francis Crick were motivated by a desire for knowledge, and the prestige in their community, not by financial incentive. That was in the days when science was largely controlled by scientists.
The era was starting to come to an end when my father, a very successful scientist, was pacing the waiting room while I was being born. Despite science having achieved in the long term far more than could have been asked of it for the funds given, government started to demand a demonstrable return on individual projects before funds were distributed. It was a counter productive change, with the effects of promoting short termism and drastically reducing efficiency. Worse, it then led into the modern environment where funding is to a large degree corporate, only interested in projects with a potential commercial return.
The world is much more commercial now than it was a few decades ago, and science has gone with it, and so have house prices around Cambridge, giving a strong motivation for a young scientist to work for GSK rather than the MRC. But when trying to find ways to correct the ills in modern science, the past is a good place to start looking.
Posted by: GH | July 12, 2010 at 04:29 PM
At some point, the american Autism epidemic will be found to be what is is...
a collection of fraud, greed & endless arrogance by a group of phoney scientists, the CDC, the AAP, the FDA,
and the drugged news media...who refuse to provide the simple facts or the truth of anything anymore unless being properly paid off.
Posted by: cmo | July 12, 2010 at 04:22 PM
Thanks, Katie. Keep 'em comin'.
Elaine
Posted by: Elaine HIckey | July 12, 2010 at 03:15 PM
They said I would never be soical.
I am an Interim chair for my own self advocacy organization, serve on several bards that advocate for disability rights, and have hob nobbed with the govenor and the state legislator!!
They said I would never make eye contact.
I have testified on the State Senate floor, given speeches all over the state, and made personal contacts with people from all over, shaking thier hand, and looking them directly in the eye.
They said I would never make it through college.
I have a Bachelor's in Graphic Design!!
They said I would never spend a moment without pain (leg spasms)
Using the wonder herb Feverfew Tops, I have not had pain for almost two months!!
They said all I could do was fast food.
I work at a well paying job for the Department of Mental Health as a voice for those with disabilities.
They said special diets would not help and that I would always be dangerously thin and have stomach pain...
Since going off main stream meds and doing the herbal remedies and changing my diet, I have gained 30lbs and look FABOULOUS!!!
ANYTHING ELSE you want to say we can never accomplish Big Pharma? ;)
Posted by: Theodora Trudorn | July 12, 2010 at 12:19 PM
I look for ward to morning coffee, and Age of Autism. Thank you for sharing this story. It gives me hope.
Posted by: Lisa Clark | July 12, 2010 at 11:59 AM
Katie,
Thank you. After hearing Dr. Dean Edell just belittle Dr. Wakefield and alternative medicine, I really needed some countering words to the dealer of doom.
Posted by: Nora | July 12, 2010 at 11:28 AM
Great article (again) Katie!
Posted by: Parent | July 12, 2010 at 10:47 AM
"Hope defeats fear every time."
that is a great quote!
~love it~
nice job K!
Posted by: michele i. | July 12, 2010 at 10:35 AM
Katie this was such a great parallel! The Clarks and Reeves are the brave and courageous! Nothing is worse than a set of medical doctors promoting a constant state of status quo, hopelessness and forcing tolerance upon you.
There is nothing about having hope that makes you weak or vulnerable, in fact it makes you stronger and smarter than most. Having hope keeps your brain alive and active on a journey of learning. Without it you become stagnant, and in some cases we unfortunately see those who loose hope, and become terribly bitter. I don't want to live my life bitter and lackluster. I want to believe that there is always a chance of great discovery. We should all take a page from the Clark and Reeve books and keep on going no matter who tells you to stop.
Thank you Katie!
Posted by: Allison | July 12, 2010 at 10:23 AM
Go, Katie! We all need hope and inspiration on this journey as we are turning the archaic, historically misunderstood "autism" ship around and headed into better waters.
We need to blaze trails in research and treatments and not just say "why" to innovative ideas but instead "why not."
Posted by: Teresa Conrick | July 12, 2010 at 10:23 AM
I'm sure Im not the only parent that from time to time feels the gravity pulling us down to our knees when parents, friends, doctors, the media tells us repeatedly that we are crazy to try, to sacrifice, to hope.
Thanks for sharing the gospel with us this morning Katie.
Posted by: bensmyson | July 12, 2010 at 09:59 AM
You know what I love... when they call the treatments we use "alternative".
ALTERNATIVE TO WHAT?!
Main stream med has NO treatments. Our treatments are the only treatments.
Just as absurd... no 'convincing' evidence of efficacy. Note that our methods are always criticized with qualifications like 'convincing'. Convincing to whom? People whose bank accounts will empty out if these treatments are adopted by the population?
They sure as heck are convincing to me, my parents, my son's teachers, my son's class mates, my son's OT who yelled at me across a room full of educators the first time she saw me after Chan started hard take HBOT, "Ginger! O.M.G! O.M.G!" I had to give her permission to tell everyone in the room what was happening in his OT sessions because she was about to jump out of her skin with excitement, and they had all stopped talking to try to figure out what she was all a twitter about.
My pediatrician discouraged me from trying the diet, and when I called back all excited that it worked, he had no interest. "I have had other families who have tried it and it didn't work". So what... it worked for my son... is that not awesome?! I wish I had more guts in those early days to call out his absurdity.
And so glad I met families like ours and was not swayed by the professional hope killers that are just trying to keep the $$ flowing and maintain plausible deniability.
Posted by: Ginger Taylor | July 12, 2010 at 09:59 AM
My sister had her spinal cord injury and was paralyzed a few years before my son was diagnosed. We have also not been able to get over the parallels between autism and SCI in terms of the unified medical establishment effort to normalize all medical issues that warrant treatment b/c they are a "part of the diganosis" and the collective attack on any traces of hope or research of alternative treatments. My sister has also made tremendous progress and has exceeded her prognosis in both motor and sensory recovery and still this won't be accepted as a result of alternative treatment. She has significantly benefited from biomedical treatments as well- especially HBOT.
Thanks Katie for bringing this amazing person to our attention!
Posted by: ginnie | July 12, 2010 at 09:16 AM
Thanks Katie for speaking up. I am still waiting for the governmental regulatory agencies to start asking parents and doctors who have recovered kids, how they did it. Gee, seems logical to me, since that is what I did, and it worked for my family. Makes you wonder what their goals are if they are not seeking answers from those who have some.
Posted by: Heidi N | July 12, 2010 at 09:09 AM
I was having some free floating anxiety and feelings of being defeated about autism this morning. This article just dissolved all that and I'm ready for battle again. Thanks Katie!
Posted by: Autism Comic | July 12, 2010 at 09:03 AM
I'm not so sure I'd say that "fragile X" has made a lot of money for institutions. In the arena of government funding in the last couple of years the fragile X community is thankful for the $20 million they've gotten in the way of federal funding, that's a very SMALL drop in the bucket compared to what autism and a few other conditions receive. Until the recent advances made by Dr. Mark Bear with his mGlur theory and the discovery on the autism front that some of the suspect genes for autism are on the FMRP (protein the fragile X gene creates) pathway very little funding comes from the autism community. A great deal of funding for fragile X research comes from individuals, private donations. The advances made in research within the fragile X community has come from parents who are not only willing to contribute monetarily but by participating in the research and if that research may improve the quality of life for an individual with an ASD, or any other condition, and their families, in this generation, the here and now, it’s reason to celebrate. My son has had the opportunity to participate in the STX209 study with remarkable improvements, we’ve even eliminated two of the meds he was previously on and reduced the one remaining medication he was taking (Abilify) by 10 mg. It may even be possible to reduce it even further or eliminate it, for that I’m grateful, our meltdowns are very few and far between, the behaviors that are common and repetitive are hugs and kisses. STX209 is just one of many projects coming down the pipeline, my hopes are high, and Dr. Mark Bear is my hero because with the progress he’s made on studying the fragile X gene my son’s future is a little brighter.
Posted by: Sally N | July 12, 2010 at 08:34 AM
Katie, I hope you will submit comments for the upcoming IACC meeting. They talk about "research opportunities" but we should insist that certain obstetric and neonatal procedures just be stopped: ultrasound, pitocin, clamping the umbilical cord, vitamin K injections, and newborn vaccinations. Forget about "randomized controlled trials" etc. Just stop, don't study, these invasive practices.
In 1969, two years after my son Conrad was diagnosed as having autism, I went back to school, and was told by all of the professional experts that I had developed a morbid fixation on autism. I still have that fixation, and still hope to be heard.
I am posting my comments to the IACC online at
http://conradsimon.org/IACCcommentsLinks.html
Posted by: Eileen Nicole Simon | July 12, 2010 at 06:57 AM