Tuesday, January 06, 2009

Ex Scientolgist Speaks About His Autistic Daughter And Life In The Church With Her


This personal story is really touching and provides an insight into the Church Of Scientology and how they treat children with brain damage. The story is fair and honest and also gives some answers to all of the speculation that has been brewing over the past few days. It's long, and there are some Scientology terms you may not understand, but it is worth the read. It came from a private area of an ex-Scientology Message Board.

I've kept out of this discussion for a while, not because I don't have anything to add or that I lack experience, in fact quite the opposite. I've had too much painful experience on this subject to tolerate some of the commentary.

Most of you know that my wife and I have a handicapped child, with a similar but more extreme spectrum than Jett. this has caused us to become quite informed in the matters of workable approaches to such disabilities.

We are also very successful in liberating people from the cofs, in fact we have personally gotten between 20 and 30 people out. Some still adhere to the tenets of the tech some have taken all the LRH books to the tip.

It is odd to me that despite this experience I have not been able to add to this thread. In fact we did try and gave up in the face of determined bigotry and ignorant recriminations.

I will have another try. But have to say personally I have found that the Travoltas loss has hit us hard. Their experience resonated against our own in a very big way. I feel for them in this circumstance.

When our kid was found to be autistic, epileptic, spastic and more, the feeling of failure as an OT was immense. The understanding of the true causes of the condition within the cult was practically zero.

Scientologists have trouble grasping the concept of brain injuries, they simply do not accept the function of the brain, it is quite bizarre.

Special kids need special love and you tend to poor the coals on your natural love for them, who knows, all that extra love might just get them through it. I can see that in the Travoltas, unfortunately I can see that JT may have denied Jett was autistic, to himself as well. I
can imagine why given the nature of Scn. The stigma is awful in a group that thinks all illness is a product of PTSness and that the spirit can heal the body. Autistic kids are seen a degraded beings and their parents "pulled it in" in a witch pit like that.

In all of this I suspect the worst and most damning aspect is the cults lack of understanding of brain injury, that attaches stigma to a true crisis and bars the way to workable (NON SCN) rehabilitation. It also closes the door to the group showing and having compassion for
the people affected, it is a very great pity. No one should be in a position that they need to claim that their autistic or intellectually impaired kid has some other Syndrome there really is no shame to it in a decent and caring environment.


My wife called me from Flag a few years ago and told me that Kelly and Jett were there, she could see his problem and we discussed a ruse that could lead Kelly to originate communication to my wife, we couldn't just walk up and talk to them, scn handlers would have sent
her to ethics, it is not an egalitarian culture. The ruse worked and thus opened the door to Mrs Feral recommending the Doman institute, we hoped to lead them to giving Jett the best help that we knew of.

Unfortunately some dimwits in the tech area of the cult branded the education part of the treatment "implanting" because it taught via the use of flash cards. Well, our kid was reading at around two or three years old through this " implanting' method. It goes to show how
little understanding of their own subject they had. Our attempt to help him was sabotaged and so was his later opportunity to communicate via written symbols or typing in assisted "facilitation". Jett like our kid could not speak at that time, I don't know if he ever did
later but I doubt it.

When I was told that my daughter was hopelessly brain injured all my tomorrows turned black. I was dying inside and stayed that way for years. I wanted to die and hoped for the opportunity, I was in hell, but like the Travoltas I'm sure, I would have given my life to stop
any more harm coming to my child. So you can imagine my reaction to seeing various members talking about giving them a slap on the face or rubbing salt into the wound. Losing a child is about the most painful thing that could happen to most people, if you have not had children
it would be hard to imagine the horror of seeing them harmed.

One couple who I helped liberate from the cult lost two children due to the churches negligence and disregard for safety. If I had gone about communicating to them the way some have communicated to or at the Travoltas I wouldn't have gotten them out, but instead I would
have branded all critics of the cult morons and SPs through my actions, it would have cemented them in. Further, any one who thinks the end (of liberating the Travoltas) justifies the means is thinking pretty much along the lines that the cofs does, "well it's OK to cave
them in as only we can save them" or "the method doesn't matter as long as we get them out of the cult" Such thinking makes a good scilon.

On another issue attacking Scn for the boy not being on anti seizure meds is faulty on two fronts. Firstly, it looks as though he may have been on them, we were never stopped or discouraged from using them by scn. We did however choose not to because they do not stop seizures,
they reduce the intensity and frequency. In fact each child in our class at the institute who was on meds still had seizures. They also have devastating side effects which were in opposition to our goals of brain rehabilitation that we were pursuing on the Doman program. I
would only use them if the safety aspect of not using them was greater than the harm that they are known to do to normal brain function was the lesser of the two evils. That harm, by the way is temporary apart from the fact that coming off them is dicey as they form dependency,
seizures can be very violent as someone weans off them, but there are many successes where the person stopped having seizures altogether once weaned.

Scientologists are not forbidden to take such Meds. Tory had to come off them to be able to audit, they simply would not allow someone to audit on mind altering drugs. The method of weaning Tory used was probably cold turkey, this is very dangerous. Other than being drug
free during auditing there is no mandate on them to my knowledge. They are not deemed to be a psych drug by the church, if they had have been Tory would have been ineligible for all Scn services just for having a past history of them.

Autism, cerebral palsy, developmental delay, spasticity and epilepsy are in most cases a product of brain injury. Sometimes they are caused due to inadequate structure due to other reasons too, but mostly not.

In the case of seizures, (epilepsy,) it is an indication of cortical damage, the seizure is a product of improper cell respiration, a lack of oxygen. Dr Temple Fay did some really ground breaking work in this area and it has made a lot of difference in the management of seizures. You can cause a seizure in a well (not brain injured) person if you lock them up somewhere that they run out of oxygen. In brain injured kids apart from poor cell respiration they are uniformly not
very rhythmic in their breathing, with long pauses in the middle of what should be an uninterrupted breath. They are chronically short of oxygen.

Anti seizure meds work, when they do, by reducing the brains demand for oxygen, they shut down or reduce brain function. Can you see why we have steered away from them?, the Travoltas may have done the same. I can only speculate.

35 comments:

Cooper's Mom said...

Wow, that was intense. And heartbreaking. My heart truly goes out to this writer. i've just sat here for the longest time in awe of his dedication and love for his daughter.

it was a truly fascinating read and just confirms my suspicions that cos is totally nuts, bordering on illegal, no?

mooshki said...

Flash cards are forbidden? They truly are evil!!!

Someone yesterday said that Kelly would have done anything to help her child. I agree, but after reading this, I can see how she could be tricked into thinking that just loving him enough, and having the right attitude, would "fix" him.

Very interesting about the anti-seizure medication.

Again, whatever may or may not have happened, I'm so sorry for them. This is horrible.

Molly said...

Losing a child is about the most painful thing that could happen to most people, if you have not had children
it would be hard to imagine the horror of seeing them harmed.




this is so true and that's why i don't get the cheap shots.

on the other hand, my aunt lost her daughter to the church of scientology and i think that kind of loss is just as bad as death. after staying away from family for twenty years, she finally came back to visit last year. she wasn't the same person i knew. she's dead inside. an empty shell.

is that really any different than the loss of a child by death?

Ror said...

I'm sorry, but if you go into a "cult" or "religion" without doing your homework on it BEFORE joining, then leave and bad mouth it later, you're ignorant and I feel no sympathy for you.

It's not like Scn hasn't been around for a while, and there are lot of objective books on the 'religion'.

Sad about their child, yes, but ultimately, it's the parents duty to choose what is right for their children, and this includes the religion/cult they pick to join.

ItsJustMe said...

I don't understand WHY flash cards would be forbidden. Is it to every Sci member, or just those with brain damage?

Sad, sad, sad all around.

Thanks for posting, very insightfu.

West End Girl said...

I'm currently reading the Anonymous site and damn, some of the things they've mentioned regarding this situation.

Sadness all round :(

JJ said...

Thanks for sharing this Enty. Interesting read.

littleoleme said...

With all the people that are now coming forward with their experiences and finally speaking out about the co$ why isn't an investigation being started into them or at the very least a reveiw of their "church" status.

mooshki said...

LittleOleMe, because they have lots of $ and lots of lawyers.

janele said...

Ror, I was in a Christian cult in the late 80s in college. We didn't have the internet back then. No one knows you're in a cult until you see the light and get out of it. I had even done term papers on cults in middle school and thought I'd be the last person in the world to be sucked into one. But sucked in I was.

Charlene said...

As a person who has epilepsy without brain injury, I should point out that epilepsy meds do not work the way this person says they do, and that the overwhelming majority of people with epilepsy have absolutely no brain injury whatsoever.

Each epilepsy med works in a different way, but none of them work by reducing the brain's need for oxygen - what nonsense.

BlahFrickinBlah said...

As for the comment about not looking into a religion first before joining, I have to think that many people turn to religion in times of despair. They are looking for an answer and if they are desperate enough, they will convince themselves of anything. They will try anything to make things better. I'm not saying this is a good thing but I can see a lot of people probably got sucked in this way. They pray on the vulnerable and when people are at weak points in their life. That is the only way I can wrap my head around how someone can believe this shit.

As for the letter, I feel for this guy. I don't quite understand the talk about the depakote though. I never heard of anyone having a hard time coming off of it but I only know of the drug as treatment for bipolar disorder. Maybe it effects people with seizure disorders differently. ??

There are tons of other medications for seizures out there. I can't understand why one wouldn't keep trying to find one that works before totally giving up. If they make them less severe and less frequent-that sounds good to me. At least it's something. I can't imagine seeing my kid have a seizure. If there was something to at least bring down the intensity or frequency, I'd be all over it. Just my opinion. I'm glad that is not something that I will have to find out how I would react to with my child.

Linnea said...

Charlene - interesting to hear what you have to say, as I have no basis for determening how accurate this description of epilepsy is. Do you not recognize any of the stuff the author is talking about?

Anonymous said...

Blah - even with Bipolar disorder, depakote should be tapered down. All seizure meds have a risk of seizures when starting/stopping (really any drug has some risk of worsening the condition it's treating to some capacity even tylenol).

jax said...

Enty, you need a new feature called Ask A Doctor. lol.

COS is a fucking cult, period.
I am not religous but if I were i'd be really offended that they refer to this Jetson's BS as a religion. please, how the hell do normal,sane people get into something like...nevermind. there is nothing normal or sane about a COS member.

Personally, i dont think what happened to Jett relates to meds at this point or not. I think there is soemthing REALLY WRONG about the timeleine, the stories and excuses comgin from their camp and what the police are saying.
is it common for someone to die of a seizure and have internal bleeding and bruising all over his body? THAT is suspect to me.

B626 said...

Autism vs scientology

very enlightening

thank you

beth said...

My little brother is epileptic (most likely caused by TS, but he has just turned 18 and hasn't decided whether to take the genetic test that would say for sure), though his seizures are now completely controlled by Tegretol. I feel really bad for the person who posted this, but... his information on epilepsy is completely wrong, at best, and possibly harmful.

Epilepsy meds most certainly do not work by decreasing the amount of oxygen the brain needs. Instead, carbamazepine (the active ingredient in tegretol) inhibits the inactivated state of voltage-gated sodium channels in the brain, so fewer of the channels are available to open and brain cells are less likely to fire (and thus, randomly fire). Valproate (the active ingredient in Depakote - which is a common drug for epilepsy treatment in the US) works by reducing high-frequency neuronal firing in the brain, as well as sodium dependent action potentials. I could also explain how some of the other common epilepsy drugs (e.g., Dilantin) work, but suffice it to say they have one thing in common: they don't work by reducing the amount of oxygen the brain needs (seriously, wtf?).

Also, epilepsy is not caused by a lack of oxygen in the brain as a rule. Yes, a lack of oxygen can cause seizures, but then so can a really high temperature... and no one would say epilepsy is caused by the brain being too hot. Epilepsy is also not most typically the result of brain injury, although brain injuries can most certainly cause epilepsy. The truth is that epilepsy has a broad range of causes, some known, some unknown... and some quasi-known. My little brother's, for instance, Drs. believe is caused by a tangle of blood vessels in his brain; this particular sort of tangle shows up in lots of TS patients who have seizures. However, Drs. have no idea why a tangle of this sort would cause epilepsy, structurally speaking...

Anyway, I don't want to get into a big scientific debate w/ this anonymous poster on another site, but I thought I'd throw in my 2 cents b/c readers seemed to be taking his science seriously.

ElsieFire said...

Hey Jax, I totally agree with you on the timeline/bruises, etc. Reminds me a whole lot of the other, non-famous Sci disciple who was dumped unceremoniously at a hospital after being subjected to a horrendous amount of abuse at the hands of other CoS members.

RIP Lisa McPherson.

Also, at the risk of insulting absolutely everyone who is a Christian, believing in something "paranormal" isn't the issue for me about CoS, as I see "God" fitting into those parameters. To me, the issue is, recruitment, depriving people of familial contacts, denial of basic needs (food, water, sleep) is what amounts to cultism.

And to add to the comment about people not knowing what they are getting into, I would say the likeliest candidates for CoS now are the people that have been and always will be the ones most susceptible to the smooth talking recruiters. The experiences of CoS members like Cruise and Travolta are entirely, utterly different than those of the people wandering in off the streets.

Just my two cents.

Anonymous said...

Every religion is a cult and all of them rely on some god to heal or kill arbitrarily. Scientology gets the bad rap because it's a newer 'religion' and because people seem to keep forgetting the Inquisition and those fun Christians who, just a couple of years ago, let their kid die after being stung several hundred times by yellow jackets. Because god was going to heal him, see? That's the defense they used in court and won. Therefore, until every religion is banished, I find it quite hypocritical that one religion is bashed and the others are ignored. Of course, Scientology IS crazy...what with the Xenu and flash carding and that crazy stuff. Geez...next thing you know, they'll be telling us that people walk on water, raise others from the dead and that snakes can talk.

Lisa said...

I stated yesterday that my child is an epileptic and has considered going off of his medication in the past. Medications can cause some serious problems and that is something he has to deal with. He is now 20 and had his first seizure when he was 2 weeks old. We have went through so many medications and different things in his lifetime. I have had to rush to the hospital more times than I care to count watching my son seize over and over because his medication just did not work.
As for the COS being a cult? Do y'all also consider all the Christian religions cults that refuse treatments? Should all religions be outlawed? I am Pagan so I have no dog in this race am just asking.
I honestly feel for this family as I can't even begin to imagine my life without my child. A parent is not supposed to outlive their child.

Anonymous said...

Sno-

My son is autistic and I totally agree with you...no parent should outlive their child. EVER.

For the purpose of disclosure, I'm an Atheist who has worked her way through EVERY religion in her life. I've read the Bible, Tao, Gita-taken communion, taken Scientology courses, converted to Judaism and, in the end, realized how ridiculous it all was. This speculation of the Travolta's has just enraged me. THEIR CHILD DIED. I will bet every dime I have that the Travolta's spent time and money as well as lavishing that child with love. Autistic children rarely show emotion and that child always looked happy. I'm so damn sorry for them. Screw the religion. These are people, first.

jax said...

Sno, yes I beleive organized religeon in any form is in a way a cult but i'm not getting on the Jesus Train today. this is about COS.actually this is about a young man who died in a very mysterious circumstance who's parents happen to be COS members..
i don't care if they were COS or Pagans at this point..something is not right here.

Unknown said...

I don't think Jett's death had anything to do with Scientology, if what I have read about him is true -- his parents took him off drugs because they weren't working.

Other than that, their religion is for another day of discussion.

mooshki said...

Apart from whether drugs had anything to do with it, what about Scientology's position on homosexuality that caused John to put his boyfriend on the payroll to cover up their relationship instead of hiring a real caretaker?

Anonymous said...

That's not COS, Mooshki, that's Hollywood

jax said...

exactly Moosh!

the first thing i thought of when i heard he was found dead in a small toilet closet with internal injuries....someone snapped and shit kicked him into a fatal seizure. and i'm not pointing fingers to who yet.
awful.

Tessa Lane said...

on another popular gossip site, someone mentioned the face that they have a strange job, where they direct people to post on boards like these and "spin" information. He said he manages staff and their job, right since Jett's death, has been to "spin" the story so that it puts John and kelly in a better light. He said he feels sick going to work lately, because so much money is being spent spinning the story. He thinks something is very fishy because he got his orders so quickly after Jett's death...bizarre if true. he said people are posting stuff for him on sites like these right now...

bionic bunny! said...

@ jax:
there's still stuff i haven't heard about jett's death, so i didn't know about the small bathroom.
but, i do know a little bit about seizures, i had two "grand mal" seizures out of the blue nearly 18 months ago. the first happened at home and lasted long enough for my daughter to reach me and call 911. i did bite my tongue severely and then came to, not really aware anything had happened. after sitting several hours in the ER, i experienced what they call an "aura" and no sooner mentioned it to my daughter, and i seized again. I WAS UNATTENDED IN THE ER. i would have fallen off the gurney had my kid not been there.
the reason i'm telling this story, is, during this second seizure, i dislocated both shoulders, damaged my teeth so badly i have trouble brushing still, and DID feel as tho i'd been badly beaten. in fact, my right shoulder was damaged so badly, it would not stay in the socket, and i can't begin to explain the pain. it had to be surgically corrected.
not only that, but the idiot ER doc caught the tail-end of the nurses questions, and told me the cause was "alcohol withdrawal" (because my answer to her question was that i had quit drinking some time ago).
so, i was badly beaten a bruised, and i take topamax, which i believe is also used sometimes as a migraine drug. i lost my driver's license for 3 months, and have to continue on the drug for 2 years, but i'm thinking i'll just continue on it, thank you very much! he also said it was good for weight loss, but i haven't seen much of that!
oh, no more seizures, OR auras, he doesn't think i'll ever have another, and we have no idea where it came from, but i'm now classified as having a seizure disorder, and doing some background digging, i was having strange facial tics for a few months prior that we thought were due to medication, and he said they were another type of seizure, a pre-cursor if you will.

and i feel for the travoltas, but they have always said that jett's condition was caused by carpet cleaning chemicals. also, near their florida home, they have been critisized for not acknowledging the boy's condition, not socializing him, and often only bringing the (daughter?) out in public. there have been a lot of rumors about how they actually treat their son for years (again, to lose a child is a horrendous tragedy, but i didn't get a chance to say this on an earlier post).

i haven't had a chance to go over there, but we (i) just go over to xenu.net (operation clambake) and see what's being said on the message boards.
sorry about the novel!!!

shakey said...

A question about this man's information on epilepsy - would it be correct to at least guess that cos members only go to cos-approved doctors? This would explain the misinformation about the epilepsy. Perhaps these doctors wouldn't even be considered as such outside of the cult?

Elsiefire, I remember that story. Sent chills down my spine. Still does. And Tessa, if this is true - would that mean it was a sanctioned death? What could they possibly get out of killing off a 16 year-old boy? Can the sympathy factor outweigh the scrutiny?

So, so many questions.

Anonymous said...

I'm sure people are just lined up to 'spin' here on cdan...good god.

The only 'spinning' here is the attempt to call parents murderers because you don't like the crap they believe in. Which, for me, is kind of great since I feel the same way about your religions, I'm sure.

But hey...I'm sure your god is completely cool with this 'spin' on John and Kelly killing their son because they're scientologists. Too bad they're not Christians...then Jett would've just died because 'god wanted him to bring him home' and you'd be sure that 'jesus had a reason'.

Wil said...

I suppose I could repost my post from last night .. but I guess my deal here is .. I just hope this situation can be of some enlightenment for the family regarding who and what serves their needs and who and what does not.

As for does CoS have people who troll blogs and post positive spin, Tessa .. oh HELL yes!! And they will harass the crap out of you as a blog owner if you post anything negative. Or .. at least they used to. I think Anonymous has quelled a lot of that subversive crap they used to do. There have been no where near the spin post I have seen in the past on the gossip and political blogs I post on.

Molly said...

bionic, people will spin this any way they want, but in a tiny 1,000 square foot dwelling, of course the bathroom is going to seem like a tiny closet. does that mean he was locked in a tiny closet as some sort of punishment or imprisonment? fuck no.

people's imaginations are off the charts whenever something like this happens.

carmen - amen. nancy drews with nothing better to do.

Anonymous said...

Molly-nice to find a like-minded soul.

Boy...who would ever think that supporters of a religious party would step up to aggressively defend their beliefs? Wow...next thing you know, people that belong to cults will be out trying to convert you or trying to get you 'saved'.

Ooops. Awkward.

I say again...Scientology, Christianity, Judaism...they're all cults who rely on the masses to donate money...especially money...for them to survive. It's ALL about the cash.

What I hate is the author of this article whining about scientology. So you were an idiot...we all have been at some point. But if other people want to be idiots and stay within the program, then who are you to try to 'get them out'? Last time I checked, people have a right to choose their religion and what to do with their lives. Personally, I think any child subjected to an organized religion is tatamount to child abuse. But in the end, that's my opinion and it's your business to raise your kids as you see fit. If your kid dies because you honestly think your god will cure them, I may be sick about it and hope there IS a hell for you to burn in but inevitably, it's not my decision.

Stop being hypocrites and leave these people alone. Their kid is dead and just like any other parent, I'm sure they'll beat themselves up the rest of their lives. I know I would

littleoleme said...

Mooshki - I'm quite aware they have both but before they never had so much attention on them. Court cases or harrasment would happen without the public knowing. My point is perhpas now is the time to move forward and expose this group for the frightning, terrifying cult it is. It has ruined so many lives.

Unknown said...

Although I have sympathy for anyone with special needs children, this person's opinions aren't necessarily the most responsible just because they seem fair and they want to "liberate" people from scientology.
There are many choices for anti-seizure medications and they can't be described and generalized like this person is trying to do. The bottom line is that it is abusive to withhold medical treatment from a minor child. It's against the law in the US. Even a reduction in seizures or intensity of them is better than nothing.
It is only speculation to say that the Travolta's withheld medication, and he makes a good point of saying this. Still, this seems like more of an attempt by this person to sell people on this institute and Non use of medications. He appears to have an agenda and is using somebody else's tragedy to sell it. It's better to get opinions from medical professionals.
Also, in all fairness, I have had patients that were scientologists before and I easily communicated with them. They weren't as hard to convince to get treatment as I thought they would be, from all the things I had read. I was surprised...but I am sure all religions have their extremists.

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