I didnt even have to read through all of this to tell you ANYTHING that promises to rid a body of Autism you need to run fast and far away from!
from your link http://www.2-b-well.org/bio.html under Jean Developes Byonetics at the end, middle paragraph,.... Jean developed Byonetics to resolve these conflicts by resetting the energy of the conflict from a negative to a positive source of healing for the child thus redefining the child, free of autism.
If you are looking for ways to help your child, educate yourself on autism and different therapies. Ask his ST, OT, PT, BT everyone involved exactly what they do and how they do it with your child and consistently carry through the same things at home with him. If insurance will cover it or if you can afford it get additional therapies outside of school.
Whatever you decide to do, Find the information from a crediable autism source and thouroughly investigate it WITH your child's doctor BEFORE doing it.
EXAMPLE: someone on here may say their child displays behaviors XYZ and it sounds exactly like my child. They say well their Dr prescribed medicine A for their child and hes doing fantastic now, It doesnt mean Medicine A is what my child needs! I need to consult with the doctor first some meds can make other things worse. Just like some form of treatment can harm your child more than help them,
WE ALL WANT to help our kids, We are all desperate for answers. There is pretty much NOTHING any of us wouldn't do if it ment curing our kids. but there is NO CURE (YET) and anyone claiming they have a cure you need to get away from!
If a new medicine came out would you allow your kid to be tested with it? NO ONE KNOWS THE LONG TERM EFFECTS! It might help,... but it also could KILL. Is his disability so severe, and so unbearable, and so debalitating its worth risking his life?
please reconsider this form of treatment look for hard evidence from reknown medical studies/ professionals / universities. i know that my son's dev ped and i had a good laugh over the thought that swimming with dolphins could perhaps "cure " anything, other than perhaps one's fear of dolphins. now,we do sacral cranial manipulation and we do use it with my son, along with reflexology, and and massage therapy. we don't use it to "cure " anything we use it to desensitize his tactile dysfunction. i implore you to talk to your child's doctor, a licensed ped, a dev ped, or a nuero psych, they will be able to tell you about the available and tested forms of therapies that may benefit you child. if something something sounds to good to be true, it's usually is.
Searched for it thru google and it only came up with one page of hits. And half of those pages it came up with are not online. I put his claim right up there with diet pills cure autism. Just because it is on the internet doesn't make it true.
Tammy
http://www.2-b-well.org/bio.html
Okay, I don't think Chelation is going to be for us, after all of the pros and cons, and thanks to all you for your input. You can tell, I am really desperate to help my son
A friend sent me the link above today, have you guys heard anything about byonetics....
Hello. I'm new to the board all though not to autism. Not saying i know alot either but I have been doing alot of studying and raising my child with autism. I have really been looking into byonetics also. At this time my son is doing speech, o/t (twice a wk.) ABA and infrored light steamroom 3x's a wk. I wasnt to hip about the hair samples and all that kind of "treatment" and my ped (which i respect highly) told me it was all a crock. BUT, I still went to this herbal dr. which sent off the hair sample and this is how we came to the steamroom. Everyone tells me at first its just a way to "steal my money" WRONG, this dr. dont even charge children to use his steam room and I must say I have seen a big difference with his speech. With the improvemets using this, I wont shoot down the swimming with dolphins o/t. I'm actually sitting here waiting for a call to schedule. Its really not to awful expensive and its worth a shot. Not like theres a horrible side effect to it or anything. (the o/t dolpins) and after doing alot of reading, not just on the net there starting to use this for cancer paitents and so on. Dolphins have been used for many reasons and who knows. Theres alot of therpies that i wont do but theres also ones i want to try I have used the byonetics program and have talked to jean genet numerous times.. it has helped my son greatly.[QUOTE=tara] also.. be wary there are people / board members out there who just want to immobilize you. [/QUOTE]
Tara I dont think board members want to immobilize anyone from treatments for their children. We are all in the same boat... loving and caring for someone with an ASD. Everyone wants answers and help and hope....
BUT Many of us have also been through this for a while.... seeing different promises and cures that end up failing.... treatments that can harm or kill the child!
What scares the heck out of me are parents who are where I was when my son was diagnosed 7+ years ago. DESPERATE for help and answers.... DESPERATE to help fix or cure their child. MOST haven't ever heard autism until their child was diagnosed. They don't know what treatments have been around and what is new... its all new to them. They see "CURE" or "FIX" and jump on it with excitement (MOST of us can relate to that I think) They unfortunately many times dont see past CURE to think it through, thoroughly investigate, and make sure it is safe. The word CURE ofthen clouts their best judgement and the child CAN and often many times DOES suffer as a result either becomming seriously ill or worse.
I have seen where people have gone online to buy vitamins, secretin, and other "autism cures" because they can't afford the doctors and do these treatments wihtout doctor supervision.... IN MY OPINION thats the same as casting a broken arm yourself or performing your own surgery. Bad stuff has been bought, poision, contaminated water..... Kids have been over dosed....it can result in severe consequences INCLUDING DEATH.
THAT is what I want to make sure people are aware of. Make sure parents who are in such a hurry to "CURE" their child STOP and THINK and become educated about the treatment first. Discuss it with the dr, do it under supervision. Many of our kids have high pain tolerance and are non verbal or have limited communication skills, they also have problems with problem solving,.... MOST of our kids won't be able to tell us if they are having a problem with a new treatment and I think its important that parents realize it BEFORE trying some new thing that PROMISES to rid the body of autism.
AUTISM is a neurological disease for which their is currently NO CURE..... Now if something promises a cure and you want your child to be the guinea pig to try it out... the decision is yours... PLEASE think it through though.
Most of us will do anything, pay anything to help our kids. We feel if we don't try it somehow makes us bad parents.... I have heard parents say they will try ANYTHING....
I see many people here in the boards who are religious....... One would think there would be no harm in seeking help from the church to cure your child's autism..... Not too long ago there was a story in the news where a mom took her autistic child to the church for an exorcism to rid him of autism - it killed him instead.....
http://news.bbc.co.uk/2/hi/americas/3179789.stm An autistic eight-year-old boy has died during a prayer service held to supposedly cure him of the evil spirits blamed for causing his condition.
ALSO - Heres an interesting site.............. http://skepdic.com/vitacon.html
check out
Vitamin supplements do no good in protecting against cancer or other diseases
On recommended dietary allowances (RDA) of vitamins and minerals
Consumer Reports test St. John's wort, SAM-e (s-adenosyl-methionine), and kava pills
Bringing LIGHT into the world through high quality nutritional supplements
ALL I want to do is make sure parents who are just learning of this information who are devistated about their child's dx research completely..... Its too easy for everyone to believe the internet before finding out where the info really came from.
Nita Dear Mother of Dominique, After you have given up on conventional medicine try Byonetics...Byonetics is an alternative method of healing. Just because something isn't easily understood doesn't mean it doesn't work. I first heard of it about 4 years ago and was very skeptical.myself. It can be used to treat disorders other than autism and my personal experience has been very successful. I imagine that it must be as successful for autism because the developer sufffered from autism as a child. Convinced in PA. As a single parent of two boys I understand everyone's concern with costs and with wanting to get whats best and most helpful to your child for the least amount of money. About fours ago I purchased a series of Jean's CDs that were geared toward adressing other issues. At that time I paid around .00 per CD. I still have the CDs, I still use the CDs, the CDs are still effective and at this time I have paid approximately .00 a month for them. Right now I am paying more than .00 a day for vitamins. I have not tried Byonetics or any other non-medical therapy. But I have to agree with the posts that say if it is so great we would hear more about it. Also if he wants to help people it seem to cost a lot for some CD's. I would like to go back to the begining of the thread were people were speaking about the vitamins and herbs. Vitamins and herbs are NOT harmless. Most medications were formulated from something in nature. You do need medical supervision if you are giving your child any "Natural" supplements. Also, if these other types of treatment, then the only way to tell would be if the child was only getting that and nothing else. Most of us have done many kinds of treatment. It is a combination of treatments that seem to offer the most hope. I am wondering if someone that has used to the CD's allows can allow others to see their child fully interactive in a social situation. I am not going to lie and say that I am not desperate for a way to make my child's life easier (not mine, although that is an incentive as well), but I do find it odd that none of the professionals I have spoken to have ever heard of Byonetics. They are like "Byo-who?". I dont want to waste my time or my hard earned money, but I think if I actually saw what was supposed to be an autistic child fully engaged in a social setting, then maybe I could be swayed. Please let me know if anyone is available for this type of meeting with me. I just happen to be a parent with a lot of hope but not a lot of money. So if someone can make the price worth my while, then please let me know where you are located so that I can pay you a visit. If I dont get any responses then I know that people are not being honest when they say that they stand behind this product. Thanks Sound wave therapy is not new. NASA has used it for years on their astronauts who in the early years came back from weightless environment of space with autistic tenencies. Their brain and their bodies were not grounded properly. The sound wave therapy NASA uses is FDA approved. The changes that parents describe are real. My son Blake has only used the first two cd's that come together since October 16. You can't tell me that he suddenly learned to speak better because of school in 6 weeks. Within 4 nights of the CD's- Blake had experienced exactly what Jean said was possible. 1. He "reverted" for a couple of days and had accidents and wet the bed. That subsided after a few days. He had not had an accident in 4 months prior. When I asked Jean- he said that it was possible for a reversion for the first week or so. 2. On day 5- after living our life without adjectives and description, with two word sentences since he was three--suddenly he says " Look Mom, Look I am walking on the straight white line." 3. HE CAN SLEEP THROUGH THE NIGHT WITHOUT WAKING OR HAVING BED WETTING ACCIDENTS. ( This is worth the 0 right there!) Because of the better rest, he is a lot better during the day. More grounded. 4. He stopped spontaneously talking gibberish in his own little world like he normally would to relax. He is here with me now & not in his mind. 5. He argues with me and his brother now. Hallaleujah! I know Kindergarten did not teach him that! I think it is sad to pass up the opportunity to help their child do better because they do not BELIEVE in something that MIGHT help. Who cares, it is a CD that plays in the background and is relaxing. If it helps what have you lost, if it doesn't--then it was worth the try. Please do not criticize unless you try it. The information forum alone is worth the 0. Perhaps he needs your email address so that he can get your address to send the free book?? Let's leave room for the possiblity for a moment that we do not all understand the nature of the universe. There is a lot of energy and power that swirls around us every day. What if redirecting that energy, light and sound waves in a concentrated direction could help people who are disconnected from themselves and this world. I do not doubt for a moment that the dolphins have a theraputic effect on damaged brains. They are thousands percent more powerful than human brains. We only use a tiny portion of our brains, perhaps if we used our brains more we could heal some of the miserable things that aflict the human race. Use the Cd's or not, but please do not try to dissuade others. These things are effective and do work. My son is so much more in touch. I doubt that 6 weeks of kindergarten was solely responsible for his advancement. The teacher has remarked at the changes in him. Let's assume for a moment that I am all wrong and all wet and the CD's are not effective--perhaps it is Jeans positive outlook then that is causing this revolution within my 6 year old. Perhaps by turning my energy from negative to positive I have helped my son redefine himself as normal, and not as autistic. Either way, regardless of the reasoning, the program helps, and Thank God for that! My son told me a joke for the first time this week, and today let me know that he did well in school but a boy named John in his class got in trouble. Blake has NEVER reported anything that happens to others. This is a large milestone that other kids are even on the radar to be talked about. Good luck everyone, why not try it. What is there to lose? 6 dinners out to semi decent restaurant?? Half a paycheck? I would give everything I own if my kid didn't have to struggle. Blake has only used the CD's for 6 weeks. But you are more than welcome to see us anytime. Blake never used to talk on the phone, and now he will talk a few sentences. We are no way completely healed or anything, but I am looking forward to the next months.He has made such big strides. I would give you my cd's when I am finished, but it will be awhile, and I do not want your child to wait. I think part of what happens to severely autistic kids is these cd's help desenitize them to annoying and overwhelming sounds. Please send me an email and we can set something up. I am not sure how to email you from this system, other than to post this comment.
I am probably one of the most sceptical people on the planet, especially
as it relates to those individuals promoting a cure for autism. It seems
that the more letters behind the person's name the less results my son
received and the more money it cost. I came across Genet's site:
byonetics.com and began to read his parent responses. I just checked
and, to date, he has posted 240 responses from parents just like me who
have received benefit from his program. We parents have been dealing
with autism for a long time and when we come across a program that
provides the most amount of results in the shortest period of time with
the least amount of monies spent, we support it. We are not wanting to
manage autism, we are needing to end it. Ending autism and curing it is
two different things. Ending autism means that my son has the
opportunity to turn back on his developmental switches and enhance his
ability to form speech, emotional contact, and mental focus to the point
where he can be fully functional in society. Curing autism means that no
child will develope autism after their vaccinations. The first person I want
to talk to is that individual who has been successful in conquering autism,
using research to define how it was done and to develop technology to
replicate the success. Jean Genet is this person.
My Gosh, folks. The Byonetics Program is simply playing special
"CDS"!! That's it folks! You'd think it involved giving
them poison given the vociferous "anti Byonetics" posts here.
Look into something before you shoot it down and possibly keep a parent
whose child might benefit from it from trying it. There's no
dangerous drugs, vitamins, creams, etc. involved at all just "CDs"
folks!
As for autism not being able to be "cured", I have over 20+ years
experience in the field as a trained special ed teacher and also
trained in Discrete Trial under one of Dr. Lovaas' Senior Therapists,
and various other methods and approaches. I have helped to
recover childre, including my own child, have helped others make
significant improvement, particularly in academic skills, and I have
met and talked with both recovered adults and children, including Raun
Kaufman (the boy in the book and movie "SonRise" who now designs and
delivers training to parents of children with autism and other
developmental disabilities through the Option Insitute which his
parents founded) on more than one occasion and Jean Genet, the
developer of the Byonetics program. Yes, not every child can or
will recover completely, but many can given the intervention that they
need. I am so tired of hearing "autism can't be cured", when
recovery IS possible for many, though granted not all. And
for those who do not "recover" significant improvement can be achieved.
I can't tell you what it is like to have a recovered child whom another
parent has met on more than one occasion and then hear her tell me in
all seriousness that "autism can't be cured", "no children really
"recover". Does she think my child was a
"misdiagnosis"? Or does it just make her feel better about her
own child, who, while having made tremendous strides, has not
recovered? I called her back a few days later as I simply had to
say that my silence didn't indicate my agreement with her the previous
day, that some children DO recover, mine did and I know others that
have also. I wasn't going to remain "politely silent".
So consider this another decision to not remain "politely
silent". Let's "broaden" our perspective folks and recognize that
just as there is a SPECTRUM of how much children manifest and are
affected by autism, so there is a SPECTRUM of how much kids can recover
from it.
Most sincerely yours,
Dhasa Dreamer - one very happy mother of a RECOVERED child, now age
eight, top student in 3rd grade, and speaks English, Mandarin, Tibetan,
Spanish, and French. When he grows up he wants to be a chef, own
his own restaurant where he says I can eat for "free" whenever I
want, and also wants to be a country music singer. Sounds
good to me. Plays piano and a mean game of Pokemon and is the joy
of my life, along with his sister.
Thanks for the link. BTW My DD is "recovered" through ABA and my
DS has made more progress than anyone thought possible, also through
ABA. Unfortunately, the cost of the Bionetics program is still too high
as my financial situation is poor. I agree that if someone can
afford the program it probably couldn't hurt to try it, the only
concern I have is that parents could choose this method and use funds
that may be better spent on OT or ST or ABA.
I think it important for parents to maximise the effectiveness of their
therapy dollar. There are so many "cures" out there and people willing
to prey on hurting parents to make a buck. Now you sound sincere and I
hope you are but I am still not convinced from the information
presented on his website that J Genet has the answer to Autism.
I can't afford the CD's to test it out so I suppose I will just
continue doing what I have learned from participating in years of ABA
therapy and hope that will be sufficient to help my DS continue to
improve.
That is great to hear about your daughter being recovered and your son having made significant progress.
I agree with you that ABA, ST, and OT can be very effective.
Along with Floortime, VB (a type of ABA), and the Sonrise Program,
which has a lot in common with Floortime. Given one already has
good interventions in place and can afford to add Byonetics, it is a
good addition, in my opinion.
I also agree with AdamsMom that "vitamins and herbs" are not
necessarily "safe" and anything you give your child should be known to
and discussed with their doctor in case there might be any
"interactions" with other things the child is being given then or may
be given in the future.
Also, sometimes supplements or herbs may actions or side effects which
are not listed in the information on the package and which you may not
know about but your child's doctor may. I have had a recent
personal experience with taking a supplement, also marketed for use
with ASD children, which "increases the oxygenation of the brain and
body". The manufacturer and distributor claim it does so through
supplying a factor for a metabolic process. In reality, it is a
vasodilator and has it's effects due to it's causing "dilation" of
blood vessels. There is nothing "wrong" with something being a
"vasodilator", and yes, vasodilators do increase the oxygenation of the
brain and body, resulting in "enhancement" of various brain and body
functions, but it should be labeled as such. It isn't. I
developed sudden and severe memory problems, due to developing TIA's
(mini strokes) from this "supplement". I was only taking "one" a
day. Far less than the amount "recommended" on the package or the
amount recommended to be given to ASD children.
I have now "stopped" taking it obviously, and with some research on the
internet found out it was actually developed by the same person who
created "Laetrile". Boy, was that stunning information! I
sat there stunned, as I said, and couldn't believe it. In all the
research I had read about this "supplement" over 20 years' time, as
well as in the information packet I received from it's manufacturer
many years ago, and the information on it's packaging today, that
information was "never" mentioned. Gee, wonder why? Might one
cast a more critical and discerning eye on it if it were? The
only information about it's background was that it had been
"extensively researched" in Russia. Leading me, by "omission" of
any other information about it's development or it's developer, to
assume it had been developed there. Which I am now sure was and
still is the "intent" of that information about it's being researched
in Russia being cited as the only "background" information on it.
Furthermore, I found out that Dr. Ernest Krebs, it's actual
developer, was indicted and convicted way back in 1961 for
distributing this so-called "supplement, assessed a large fine for the
time, and sentenced to six years in prison. This "supplement" ofen
referred to as a "vitamin" in the "research" on it, supposedly was
"banned" from being distributed, yet here, over 40 years later, it is
still being made and distributed right here in the US. And still
having the truth about it's development and who developed it hidden by
"omission". Dr. Kreb's prison sentence was dropped in a deal he
made with the federal government which involvedhis agreeing to stop
distributing Laetrile. In all the "research" I had previously
read about this supplement, it's being developed by the same
person who developed Laetrile was never "mentioned". In
fact they were both developed AT THE SAME TIME, and this supplement was
marketed in the past as an "enhancer" of endurance and pleasure "in the
bedroom". Due to it's vasodilation proeprties, I'm sure. Do
your own research on this. All such "enhancers" are
"vasodilators". That past marketing as an enhancer of endurance
and pleasure "in the bedroom" as they phrased it then led to further
federal prosecution, by the way, and more than once. Again,
information about past federal prosecution and conviction in regards to
this "supplement" is also never "mentioned" in the research cited on
this "supplement".
By the way, Dr. Krebs also later took to calling Laetrile "Vitamin
B17". Why? Specifically to avoid FDA drug testing
requirements and regulation.
Does this "supplement" "work"? Sure, it gave me more energy,
increased mental clarity, and a feeling of increased
"well-being". As many vasodilators, do. Almost gave me a
major "stroke", too, due to it's causing dilation of a vein in my
brain. The caffeine in coffee is also a "vasodilator" - do the
"effects" of this substance and "coffee" sound the same? The
"only" side effect of this supplement ever mentioned, which IS noted in
the information on this supplement's use with ASD children, notes that
some "exhibit hyperactivity" with it's use. The recommendaton is
to add another supplement to "counteract" that effect. I know
that if I took it at lunch, instead of in the morning, it would keep me
"up" at night. And taking more than "one" tablet per day would
make me feel "wired" and even "agitated" as the day went on.
Again, much like too much "coffee" does to some people, due to the
vasodilation effects of the "caffeine" in it. That is "how"
coffee makes people feel more "peppy" and their thinking more
"sharp". Interestingly, the "visual side effects" of Viagra,
which are mentioned in media information about it, are actually due to
"hemorrhages" in the delicate blood vessels of the eyes. In
medical literature about this, these are called what they are: "small
strokes". Funny, how I had never "heard" or "read" about
that being the cause of Viagara's "mysterious" visual "side
effects". Just another example of 'information management"
by "omission".
So I am left sadder but wiser. There is no such thing as
something "with no known side effects". Even water, if you drink
too much of it, can cause various "side effects", including seizures in
those with seizure conditions. Giving a peson suspected of
having epilepsy lots of water in a short period of time actually used
to be one of the "tests" used to diagnose it. When there are no
"reported" side effects about some substance, perhaps the truth is that
side effects are simply not being "reported" rather than not
"occurring". And of course, there is no "requirement" that side
effects to "food supplements" or "vitamins" be "reported" at all.
Dhasa
I have a therapist who started working with a 2 year old 6 months ago
and he couldn't even say one word. Now he can talk in 5 word
sentences, now that is a dramatic improvement. I still believe that if
Bionetics was so wonderful then there would be more objective measures
of its success available. At least with ABA there are many research
articles available supporting the method.
I find I am very sceptical of people saying they are noted researchers
but not actually giving you a link so you can check out their article
or even saying where it is published. The only support he has is
a lot of parent testimonials that can't be verified. There are no
contact details so we can check that these people actually exist.
Still that is MHO and as you say people can make up their own minds.
Yes, I totally support and respect everyone's right to make up their own minds.
If you really want to read the 25 autism myths you can do so by going here:
http://www.generationrescue.org/mercury_myths.html
My free gift to you.
I support a wide variety of interventions: ABA, VB (Verbal Behavior, a
type of ABA, as taught by Vince Carbone), Social Exchange Theory as
outlined by Martin Kozloff in his book "Reading the Autistic Child",
the Sonrise Method see www.option.org , PECS, PCS (Personal
Communication Symbols available from Mayer-Johnson Company), Sensory
Integration Therapy, dietary interventions, enzymes from Houston
Nutraceuticals, neurofeedback, prayer, and "laughter" (as in doing
things that make your child laugh and experience "joy" each and every
day). I firmly believe that laughter and a "merry heart" doeth
good like medicine". Laughter and "squeals" of "joy" also help to
elicit "sounds" and exercise the oral motor and speech structures,
which over time can be "shaped" into sounds on request and then speech
and language.
I, too, back when I was still working, had great success in working
with children with ASD of various ages as well as other disorders
particularly in tha areas of speech and language, cognition, and
academic skills. I specialized in academic instruction of
both verbal and nonverbal children with ASD and worked in public and
private school settings, and also privately. A skillful therapist
who truly "likes" working with these children and who holds "high
hopes" for them, in conjunction with parents who "carry through" at
home, can accomplish much. In this I think we are both in
agreement.
There are many interventions which carry the potential of "risk", such
as chelation therapy and the use of various medications and
supplements. Some children have been harmed by "forced holding",
and two ASD teens, both boys, were sadly "killed", while being "matted"
(rolled up in an exercise mat) and "restrained". Sickeningly to
me, one of them was then "sat" on by a staff member while still
"matted" resulting in his suffocating to death, while the other
young man had a helmet on his head keeping him in the "dark" while also
playing loud "white noise" while he died. I believe both of those
young men died of sheer "despair" and in great fear. In my mind
NEITHER of those two deaths should have ever happened. I have
never forgotten about either of those two young men.
Teachers and parents DO need to draw the line of what they will and
will "not" do and what they think "is" and "isn't" safe. In this
you and I are again in "agreement" and I support your efforts to help
parents draw their own lines.
Byonetics carries no such "risks" and "costs" far less than many other
interventions that do have some risks. I certainly would not
advocate it as a "sole" method of intervention, but see no harm in
"adding" it in. It could help, and it cannot "harm".
Parents find it "easy" to implement. That's basically where I am
"coming from" in sharing about it.
And for the record, skillful use of "errorless learning methods",
adjusting expectations, and providing a "break" area in classrooms
which students can go to when they need to or allowing them to jump on
a rebounder in a corner or take a walk up and down the hall, whatever
they need to "calm down" and "regroup", can help to prevent the kind of
frustration, escalating behaviors, and "acting out" that some people
still choose to "consequate" with such inhumane methods. If I did
that to my "dog", I'm sure "cruelty" charges would be lodged against
me, and rightfully so.
It is as a result of those two young men, and so many other children,
teens, and young adults I saw early in my career not receiving
effective interventions and spending their days and lives in such
"bleak" environments, that I am so "committed" to making sure parents
"know" about ALL the options out there. I saw the records
of children I knew who were then teens, who when taken to UCLA by their
parents for "help" were told by a certain MD and "expert" that there
was "nothing to be done for them", when he knew FULL WELL that just a
few minutes' walk away Dr. Lovaas was recovering many such
children. But he chose to "withold" that information. Tears
streamed down my face as I read one file after another of children who
had had that done to them and to their parents. Children who,
from working with them, I knew might have "recovered" with appropriate
early intervention, and others who would have been much better
off. My supervisor walked by, saw my tears, and said "Have you
been reading those files I asked you to put in order? I told you
not to read them". He told me not to read them, he said, as
he knew I would "cry" if I did, just as he had when he had read
them. He was one of the most skilled evaluators and teachers of
children with autism I ever met. At that time he was the head of
a county-wide autism program which he had created that was nationally
recognized. He treated all students with ASD with deep
compassion and immense "dignity" at all times. "Overhearing" him
assessing or working with a child with ASD you would never "know" the
child had ASD by the way he talked to and with them. Only when
the child walked out of the assessment room, would you know. It
didn't matter whether the child was "verbal" or not, high functioning
or not, he talked to and with them in the same respectful and gentle
way. From the very first day I met him, I made a decision
to become as "skilled" as he was and to always treat my students with
the same hope, compassion, and dignity. And I vowed I would NEVER
withhold information from parents about other methods, whether I agreed
with them or not.
What each parent then "chooses" is their choice. However, many
parents who would like to "do more" are "constrained" by finances,
insurance, other children to care and provide for, and school districts
that offer very little. For them "adding" something like
"Byonetics" is something they "can" do with very little effort,
training, or money. And no "risk" of harm.
Sincerely,
Debbie
P.S. those children who were "teens" when I met them had been
very young when they were taken to that Dr. and "expert" at UCLA,
"young" enough to be accepted into Dr. Lovaas' research and "young
enough" for many of them to be "recovered" through his methods.
Not every child recovers, of course, but some of them could have
and "all" of them would have benefitted from such intervention at
such a young age. There was no "charge" for Dr. Lovaas' treatment
then, it was totally covered by research funding.
I saw before me in those child's files how someone had played "God" with their lives and their parents lives. And I wept.
Debbie
I agree with dhasadreamer on this one. I have started the cd program with my 6 year old last month. At first he was a little irritable. But after the first 5 days he is more focused than ever and responding with more normal language, questions, and involvement. His eye contact is better, and he has somehow become more focused enough to stay with me to learn to read. He now can read over 40 words and read simple books out loud to me---!!!!and tell me what the story is about!!!! Not mindless parrotting. He is starting this week with common language-- like when I say "come to dinner!" He will answer-- "but I'm busy..." Not what I want to hear, but before he would ignore me, or not respond. Now he is speaking his mind. I say yay to these CD"s and what the heck! We are gonna swim with the dolphins Baby! My child is responding like wildfire! next week I get my next CD. I have not implemented any other treatments simultaneously with the CD's that we had not been using before. We were on GFCF diet since February. Then I added the CD"s and nothing more. I see definite improvement. I was skeptical, and needed a scientific approach. Best 0 I have ever spent. Also, when you buy them you get a very good email forum with loads of other information, questions and answers. It is a great thing!Dear Cara,
I am glad you are having such good results with the CD's. My son
is nearing the end of his second CD and we should be received his third
CD any day.
I cannot believe, given the "risks" of certain medical/supplement
interventions that anyone would "warn" parents off of simply playing a
"CD" at night while their child is falling asleep and playing another
CD as "background: during the day. Go figure.
Dhasa
I will go this way any day and stay away from the use of drugs and unknown antidotes. I have wondered about many avenues. As long as the non invasive and natural, nutrition based and cd based interventions are working, I will stay away from the rest. I immediately believed in this program, because it is basically a biofeednack technique that is done for you while you sleep. My mother controlled epilepsy through biofeedback. If you can listen to foreign language cd's and learn to sepak french, why couldn't you also pick up how to keep your mind clear? It is not harmful and makes total sense to me! I am looking forward to my next cd next week!I must again speak out about two issues: 1) "attacking" someone
you have never met or spoken with, who is offering a treatment for
autism as "sick" and 2) statements in BOLD CAPS that autism "cannot be
cured".
ISSUE #1) So offering a treatment that could help a child with autism
is "sick"? Why do you then undertake any treatments for your
child? But then maybe you don't. That is okay, it is your
choice and right as a parent to choose what you do and don't do with
your child. Just as it is other parents "right to choose" what
they do and don't do with theirs. I believe strongly in "full
disclosure" of all intervention methods so that parents can "choose"
for themselves what best suits their child and family. I have
heard as a professional parents lamenting that they "wish" they had
"known sooner" when their child was first diagnosed about certain
interventions which they later found to be very effective for their
child, but which they were not "told" about when their child was first
diagnosed. They were only "told" about those interventions which
the professionals they consulted "agreed with". They felt it was
"wrong" of those professionals to take away their right to "know
about", "choose" and "try" by deciding "for" them "what" interventions
they told them about.
iSSUE #2) To state that "autism cannot be cured" is simply an out and
out falsehood and you do parents of newly diagnosed children a grave
disservice in saying so. Again, if you believe this, and again
that is your choice and right to choose to believe that, why bother
joining any forums? I have met and interacted with many children
and adults who HAVE INDEED RECOVERED from autism. They were not
"misdiagnosed"as many like to "dismiss" such proof, nor are their
parents and involved professionals "in denial". Recovery DOES happen,
my child "recovered" and is still recovered. Recovered children
do exist and parents have a right to be informed of all available
interventions that may help their child to also recover. Then it
is their right to "choose" what they want and don't want to do and to
also have "peace" about their choices. It is hard to have "peace"
however, for some parents when they find out later that there were many
interventions they never "knew" about, or came to know about "too late"
to produce recovery instead of just "improvement" in their child
because what they "knew" was "censored" by someone else they
trusted. Please do not make such a "choice" for other
parents, do not be the cause of any other parents having the same "lack
of peace" about their child that you seem to have.
FOOD FOR THOUGHT: Why, if you believe children with autism cannot
be cured, do you then do anything at all to help your child? Do
you do it in hopes of "improvement" but not cure? So it is "okay"
with you for a child to improve "just so much" but not "too
much"? Can their really be such a thing as "too much"
improvement? Can you see the lack of logic to what you are
espousing? Why does the idea of a child "improving" "too
much", ie beyond your expectations, upset you so? Why do you
choose to believe that it's not possible for a child to improve to the
point of recovery? Is it more comforting to you to believe
that?
I think that is really what the "anti-recovery" stance is about.
That it is more "comfortable" for certain parents psychologically to
believe that autism "cannot be cured" and that there is no such thing
as "recovered" children or adults. "Why" this is so probably
varies from parent to parent, but some commonalities can be seen in
parents who don't just "hold" this belief but feel compelled to join
forums and share it LOUDLY with others whenever the "R" word is
mentioned or whenever another new intervention that is successful with
some children comes along. Perhaps they use such a belief to
avoid feeling bad that they just weren't up to doing or weren't able,
for various legitimate reasons, to do the kinds of interventions that
may have recovered their child. And holding this belief and
SHOUTING it to others helps them to "feel" better themselves about
it. It really has nothing to do with "helping" other parents to
avoid "ineffective" methods but everything to do with helping "them" to
feel "better". They "could" choose to simply "feel okay" about
their decisions or their child's outcome despite intervention without
having to "justify" it to themselves and others by denying the fact
that some children with autism DO recover. Yes, many of the
effective intensive interventions are very time intensive, other
medical interventions are beyond the financial means of many, why not
just say so to yourself or others who ask and choose to have "inner
peace" about your decisions, rather than attacking the "effectiveness"
of interventions which HAVE been SCIENTIFICALLY PROVEN to be
"successful", as in, for example, the case of Dr. Lovaas' method, 47%
of those children it is used with? Why are you so strongly
"compelled" to not only "deny" the reality of "recovery" but also to
attack and impugn the character and motives of those who develop and
provide such interventions? Is your "comfort" with your own
decision not to pursue "recovery" for your child, for whatever reasons
which you are perfectly right to "choose", so "shaky" that you are
"threatened" every time you are confronted with parents whose children
"have" recovered? Or perhaps you DID do intensive intervention
methods and unfortunately your child didn't recover. You have my
sympathy, just as I am sure you would have the sympathy of many other
parents. However, just because not every child with "leukemia",
for example, doesn't "recover" certainly does not mean that other
children with it "don't" recover. For certain leukemias, the
"recovery rate" is currently "60%", that's good enough for many parents
to choose to do whatever it takes to recover their child if
possible. If their child doesn't recover, they do not strike out
at those parents whose children "have" recovered nor call the doctors
offering treatments for leukemia "sick". Nor do they go around
telling other parents of children with leukemia that "leukemia cannot
be cured".
FOOD FOR THOUGHT: "Might" it just be "possible" that your belief
may be a "defense mechanism" that works for you? There is nothing
wrong with that, we all have need and have chosen beliefs that "get us
through the night" when needed and I would be the last person to deny
that parenting a child with autism can be very challenging, upsetting,
and wearying at times. I have no bones with what "works" for
anyone in that situation. I do have bones with their "imposing"
their "truth" on others and dissuading other parents from trying
interventions that can cause no "harm" and are far less "time
intensive" or financially expensive than many other interventions.
Personally, my opinion is that using the Houston Nutraceuticals enzymes
instead of a gfcf diet is very low cost and low effort and well worth a
"try" to see if it helps your child. And I speak from having done
the gfcf diet for four years before switching to the enzymes. And
using the Byonetics CD"s is also VERY LOW COST, just FYI its 0
upfront and then a month for 12 months for which you receive about
10 CD's I think over the course of the 12 months for anyone that is
interested. If your insurance company covers Sensory Integration
Therapy, and they often do IF you child is under 6 years of age AND the
therapist knows how to "code" your child's diagnosis and the treatment
provided, then I highly suggest trying that, too. I also strongly
suggest learning how to do "Floortime" therapy, which I learned by
reading the book "The Special Child" from the library and again later
in a bookstore, and also by having "two" training sessions with a
certified highly-skilled Floortime Therapist who "trained" me how to do
it with my child with my child "there" while she did so using him and
his sister to "demonstrate" to me "how" to do it.
Lastly, I would recommend the wonderful book "A Slant of Light: One
Boy's Courage" by Beth Kephart, about her son who was diagnosed with
PDD around age 2 and had severe speech apraxia as well. Why do I
recommend this book? Because she addresses "why" she and
her husband chose to do a "less intensive" intervention, "what" they
did, the factors it was based on, her "inner peace" with her choice,
and the reassurance this book can give to parents of a newly diagnosed
child that a child "can" make significant iand satisfying mprovements
with a less intensive intervention and that there are many "shades" of
success for a child with autism with which parents can live comfortably
and happily. One doesn't need to feel "badly" about being
"limited" in what one can "afford" to do or has the time and personal
energy or ability to do. She is a gifted professional writer and
shares in depth her contemplation and analysis of her own personal
temperament, personality, and feelings as she comes to grips with her
son's diagnosis, her responses to it, her thoughts about its "causes",
and her and her husband's choices about what to "do" about it.
Again, this descriptive personal analysis she shares of her feelings,
thoughts, and choices is one of the reasons I recommend this book
highly to other parents. I believe it is important and very
helpful for parents of newly diagnosed children to take the time to
carefully think through and discuss their own thoughts and feelings
about their child's diagnosis and what they want "to do" about it, just
as Beth did, so they can make decisions about intervention which they
can "live with" with inner peace. Her son is not "recovered" by
the end of the book but is very much improved at the age of 8 or 9 and
doing well within a regular classroom. And his parents are
"happy" and satisfied with his outcome and their choices regarding what
to do each step along his way to that outcome. Many years later,
after my own son was long recovered, after recommending this book once
again to a new mother, I suddenly became curious to see how Beth's son
"turned out" and I found that he did continue to improve after that and
actually did reach "recovery" and is considered "gifted", as you can
find out by reading some of her other books she wrote afterwards in
which he and how he turned out is mentioned though not "focused"
on. Beth Kephart was a professional writer when her son was born
and has written on various topics. I highly recommend her books
which are beautiful in their "eloquence" about what she feels is really
important for children to be "doing" during "childhood" and how some of
the "changes" in childhood today impact children today.
Okay, I am "done". I offer all this as an encourage to other
parents to take the time to examine their own heart about their child's
autism and about "what" they would be comfortable in doing about
it. Please "consider" the source of advice you may receive
regarding "what" you should or "shouldn't" do and the possible
"psychological" reasons or defense mechanisms that may underlie some
parents' advice and "cautiions". Ultimately, "you" are the best
judge of what is best for your child and your family, what "amount" of
intervention you choose to do, and "which" interventions you use.
As ultimately it is "you" and "your child" who have to "live" with the
decisions you make. What "if" your child, despite your best
efforts "doesn't" recover? My best advice is that it's important
to prepare yourself for whatever results are achieved, accepting your
child exactly as he or she "is" every step of the way, while still
"hoping" and "working" for "more". I think many of the parents
who are so "hostile" to the "R" word are actually simply unhappy and
"angry". I wish them only "peace", and they have both my sympathy
and compassion. I just wish they might consider some being more
sympathetic and compassionate with themselves and others.
Dr. Lovaas sensitively addresses the painful issue of those children
who do not achieve recovery in his book "The Me Book". You can
read his gentle and compassionate words in it. I also heard him
address this issue extemporaneously when asked about children who do
not recover even though they received his intervention. He gently
talked about life sometimes being unfair in various ways and how things
don't always turn out as we had hoped. We don't always achieve
the dreams we had for ourselves, and that sometimes even children
without autism do not achieve the dreams their parents had for them
either. Many people do not achieve the dreams they had for
themselves, and that in this experience of unfulfilled dreams and
"suffering" that accompanies them, children with autism who do not
recover are able to "share" with the rest of us as just an aspect of
being "human". I found his thoughtful and careful reply to be
very compassionate and comforting. This was many years before my
own son was adopted and I had to face autism in my own child rather
than a child I was "working with". I reflected on what Dr. Lovaas
had said then and also what he wrote in his book many times as I worked
toward my own son's recovery in order to prepare myself to be "happy"
and "at peace" whatever the outcome.
Wishing everyone that reads this post only the best and "peace" themselves,
Dhasa
Perhaps I should clarify that my previous post was in response to
rereading all the previous posts in this thread, in particular the one
by "JacksMum" in which she said that Jean Genet, whom she has never
"met" or "spoken with", saying he is "recovered" from having autism as
a child is "just sick".
I spent YEARS listening to "professionals" denigrate Dr. Lovaas' work
and when I questioned them privately one-on-one if they had attended
any of his seminars or read his published research, or viewed videos of
the children he recovered from before they started treatment, during
treatment, and after treatment, or met any of his recovered children,
they all said "no", yet they would pass judgment on him and his method
to hundreds of people at a time. I softly suggested that if they
actually looked into his method, read the research, looked at his video
documentation, they might feel differently. When I asked these
same people, again "one on one" not in front of hundreds, if they had
"outcome" data on "their" methods effectiveness, they said they "did
not believe" in keeping such data! I was shocked. And one
of them is one of the