Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

6/11/08

Warning: This Is Nothing To Laugh At

If someone feels they are an Indigo and they believe in this concept, that is one thing. I don't agree, but who am I to judge? However, if your beliefs are in any way detrimental to children, I take issue. Major issue. Here is the start of my concerns over the Indigo concept.

From here, it is suggested that "vibrations" will interrupt seizures, among other startling claims:


From vibrations sounded mentally that will interrupt seizures and stabilize brain function to attitude adjustments which free mind and body from long-standing, stagnation-producing concepts to the mental and emotional state of the comatose, the research is astounding and deserves to be noted, explored, and utilized more widely.


This site offers ill-advice for a febrile seizure:
If a seizure occurs, keep your child upright if possible and make sure she is breathing well. Reassure her. If she vomits, turn her on her side.

As a mother of a child who has seizures, this is awful advice. We have always been told to immediately put our child on a safe, flat surface (it would be impossible, at least during my child's grand-mal/tonic-clonic seizures to sit her up). If she begins to vomit, we turn her slightly on her side so she doesn't choke. Here is what NINDS advises:
To prevent accidental injury, the child should be placed on a protected surface such as the floor or ground. The child should not be held or restrained during a convulsion. To prevent choking, the child should be placed on his or her side or stomach.

I fear that there may be children out there who are not being properly treated for seizures (thankfully, it seems Jenny does take her son's seizures seriously and he is treated medically for them, but others may not be so wise). It seems likely that a child diagnosed with ADHD, autism bipolar, etc. whose parents feel s/he is a Crystal, may not be afforded all available help or treatments. There are people who, despite the best efforts (at alternatives like talk therapy), they need antidepressants or anti-anxiety medications. Without, they can be at risk for suicide or other negative outcomes.

As I read more into the Indigo concept, I couldn't help but draw even more similarities to Scientology. The dangers that have come from Scientology's stance against all things psychiatric have been widely, and tragically, documented. I came upon this, and it would seem that New Earth Magazine looks highly upon L. Ron Hubbard (founder of Scientology):

As an aside, L.Ron Hubbard of Scientology says that the more they can avoid the indoctrination of the school system, the better off they are in this world.

I think extreme caution has to be used when a group disregards medically-accepted diagnoses and treatments. They continually dispute scientific studies, promote conspiracy theories, and regurgitate the same information and sound bites over and over again. When this group storms Washington, D.C. and promotes an ongoing campaign to alter the (historically substantial and successful) vaccine system in the U.S., it is concerning. When this same group and its bombshell messenger employs tactics in an attempt to oust a government official, we need to take note. When they are given nearly free range on the media, to push their propaganda, we cannot sit idly by.

I've mentioned my concerns previously with regard to Ms. McCarthy and her message. Personally, I have nothing against her as a human being. I can relate to her, when she speaks of her son's seizures. However, the reality I face is that there is a startling lack of services for teen and adult autistics. My daughter is still rather young, and I do have time. However, I know plenty of other families and individuals who are in great need of those lacking services NOW. And, it's clear that unless major initiatives are made soon, we'll face the same issues with our daughter in a few years.

Jenny, despite what some will claim, has done nothing to further this effort. She continues the stigma that autistics have been "kidnapped" or her personal favorite, "hit by a bus." She focuses on recovery, telling the world she doesn't know of any adult autistics (so why bother creating any new programs?). Her loud cries that she would never vaccinate a child again and that she feels you should alter a proven vaccine program, is risky.

I worry for what the future will bring my child--will she have proper assistance? paths to independence? acceptance? And now I fear if I can protect her from outbreaks of whooping cough, measles, and the like. It's clear that this disturbing message will sink even further from my goals. We have no time to waste, to get programs created and funded for teen and adult autistics. This is all a huge distraction, one that unfortunately, all of the public is listening to.

You now know where this is headed. There is nothing funny here at all.

7 comments:

Kassiane said...

Well that's nothing short of terrifying. It's one thing if people generally don't know how to deal with seizures (I carry a short list of instructions, included is "I like my teeth and breathing. I don't like being stepped on"). It's another entirely if they're taking cues from newage woowoos.

Shades of Hubbard, indeed. *shakes head*

Camille said...

I would be surprised if Jenny hasn't tried to manage her son's seizures with crystal necklaces, diflucan or whatever else she may have come across. It seems like they had his seizures under control and then she says that he had seizures all day long one day(a year ago in May) and they ended up putting him in the hospital and putting him in a coma.

I can't help but think that she had been trying to take him off his seizure meds and that that was the outcome.

Maybe not, but it seems that after he came out of the coma he hasn't had any more. Which would be consistent with her putting him back on the meds he was on before, but maybe she didn't take him off his meds. I don't know.

S.L. said...

Kassiane:
Exactly. That website is where Indigos go for parenting/medical advice. Scary that even for basic febrile seizure care, they don't get it straight. And, the whole "vibrations" stopping seizures...OMG! I'm waiting for Kryon to speak on what to do about seizures...

Camille:
I wonder what the history is on these seizures as well. I just pray she never tried any of the Indigo methods. I read that in her book, she tried her son's seizure meds (because she felt they were "making him crazy"). Every medication has the risk of side-effects. We've switched seizure meds only once, thankfully. But when we did, the neuro reviewed what to look out for (behavioral issues, which we both got a chuckle out of...consider my little one already has her fair share of those!). If she experienced anything above & beyond her norm, to call and we'd try the next med on the list. That's fairly typical for seizure meds, just as if they don't prevent seizures, you alter dosage, add or change meds. I would never take any of kids' medications. Seriously.

I was using my Google PhD. to try and find what occurred following Jenny's seizure med trial, there is nothing I could find to say whether her son was put on a different medication (it made her "crazy" too she says). It would be rather sad if based on her trial, she discontinued meds and that led to seizures. Let's hope that's not the case. And, at the very least, he'll remain on seizure medicine.

Anonymous said...

what Jenny forgets to mention is the brain crushing helmet she made him wear in his first year so he would have a pretty shaped haed.
The kid ain't autistic it gave him a brain injury and the epilepsy is the result. Her cure is no more than the brain healing itself like stroke patients heal. Someone needs to ask her bout that publically.

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