[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Nancy Walton]

Hi Barb,

And I apologize to you. After chatting with you on line, I fully understand what you were really trying to say to everyone. I DO want to stress, that the rest of your post was very important and I hope new people to the group understand where we have come from.

I want to say that my point got taken off into another direction. My point was that we be courteous to each other. I was not saying that we should change the parameters of the chat. The reason that the parameters are there is so that new people do not have to have the painful experiences that many of the old-timers have had.

We warn you away from alternative therapies because we have been there and tried that. I don't think it is so much the alternative therapy that was painful (as I never did anything that compromised my sons ABA program or his health), but it was the constant wracking of my brain – trying to figure out how to cure my son – that was painful. I can remember my head hurting as I pondered all the alternatives that I should be trying.

I think I stopped worrying about it when I was reintroducing my son to wheat (we did the gluten thing…and he did have a diahrea problem which got better). As we were increasing my son's wheat intake, his speech was suddenly improving. My consultant jokingly said, "well, what ever you are doing, keep doing it, it's working". Well, ofcourse the increase in wheat wasn't working….he was just ready to talk. It was then that I let go. Quit worrying. When opportunity arrises, I try something else, but I don't get all wrapped up about it.

The important thing is to keep your eye on the ball. ABA. Get that going. It works. It's slow (for some, very fast for others), but it works.

OH, and one more thing…take care of yourself. Yes, YOU, the parent. Take care of yourself. Your child needs you. Go have some fun. Rest your brain now and then.

Thanks for listening again,

Nancy

[FEAT BC Admin]

To all FEAT-BC Discussion Board Members:

The recent discussion group threads on
vaccine issues and chelating, although
important, thoughtful and probing, are
inappropriate in the FEAT-BC forum; this is not
a general-topics autism group. These topics
are certainly not illegitimate for discussion
and debate, but they are simply not what this
space is designed and intended to discuss.

The discussion group threads of recent days
present a good opportunity to repost some key
rules of the FEAT-BC discussion group, to
keep this forum on-task and focused on its
intended purpose.

Thank you for your understanding and
cooperation.

Regards,
Isaac (Miki's Dad)
Volunteer Board Admin.

***********************************************
The FEAT-BC Discussion Group Rules
(excerpt from the 'WELCOME' page)

1) Be courteous to each other. We ask you to
refrain from abusive language, insults and
profanity …

2) Personal attacks are not permissible in the
FEAT BC Discussion Group. We respect all
opinions even if we disagree with them.

6) The FEAT BC Discussion Group has been
designed to discuss any topic relevant to
home-based A.B.A. programs (including
Government funding and school issues).
When we use the term A.B.A., we mean
discrete-trial-based interventions, also
referred to as "Applied Behaviour Analysis" or
"Lovaas-type" Intensive Behavioural Treatment
for autism and related disorders. This is not
an appropriate forum to discuss the latest,
unscientific 'cure of the day.' If you would like
to discuss alternative autism treatment
options, please use the discussion forum
hosted by the Autism Society of B.C, at
http://www.autismbc.ca, or the THE AUTISM
MAIL LIST. To subscribe, send an email
to:<A HREF="mailto:listserv@MAELSTROM.STJOHNS.ED
U”>listserv@MAELSTROM.STJOHNS.EDU.
Leave the subject line blank and in the body
type SUBSCRIBE AUTISM [firstname
lastname]
***********************************************

[Deleted User]

Has everyone expressed their hurt and anger? I’m posting again… I can just hear the comments about me in the air!

The members of this board are just people, we ALL make mistakes, we all get angry at times and we’ve likely all been hurt at times too. Add in electronic communication variables and parents who are stressed, sad, angry and irritated and frustrated and paying out $40,000 + a year and you have a recipe for flare ups. People say things they don’t mean or flare up in anger and lash out. Can anyone really claim that they’ve never done anything hurtful, whether purposeful or unintentional?

That said I’d love to snag onto something that Stella said and move this conversation into a slightly new direction!

Stella brings up a great point about how some parents are such wonderfully supportive people! What a great opportunity to thank those parents who do extend themselves to new parents, who spend countless hours on the phone helping new parents through each step of the process, answering questions and steering towards information. I don’t know all the parents who are involved in this so forgive me if I’ve excluded you, but thank you Tamara, Sabrina, Jean, Barbara, Bev, Nancy, Jenny – you guys are amazing!!

Its not easy to open up one’s life to every new parent that has questions. As an extremely private person (mostly) I find that aspect very difficult and am so amazed how easy it is for these women. Many of us do not like to open up and share about our programs, our children’s progress or our consultants. Some, like me, find this to be a very painful process. And some like me, after having so many therapists walk in and out of their home feel a great need to keep some aspects of our life private. So for this reason, I am amazed and thankful that we have so many wonderful parents who are ready and willing to share, who can step in and take the time to answer all those questions.

Some of these amazing, open, supportive people (ahhh, ya, not me!) will be participating in a panel discussion for new and “old-timer” parents at the workshop this Saturday. Those of you with questions or who are just getting started will find this to be a very informative discussion. Collectively, these parents have been through it all and are passionately committed to sharing their ups and downs with everyone.

But if you are like me and are not comfortable being questioned or are just not the “supportive” type, no worries, there is a job for you too! We all have a role to play in this community. Political lobbying, workshop organization, political lobbying, and working towards improvements and standards in the field are just a few areas that can always use assistance. Did I mention political lobbying?

See you all this weekend, just don’t ask me to share my personal life :-)

Michelle

[Mike & Jean]

I need your help…I'm trying to find a ride for someone who is coming to the Mar. 12th conference. This person lives within walking distance to Lougheed Mall.

Is there anyone going by that way who would be willing to give someone a lift?

If so please email me at: jean.lewis@telus.net

Thanks,
Jean

[Stella Li]

Hello everyone,

I am a relatively new parent. Just wanted to share two points here.

(1) I am very thankful of the support and the valuable information I got before my son was officially diagnosed last year in July. Of the many parents and professionals who spent me talking to me and emailing me, I appreciated your input and support very much. I am especially thankful to Sabrina Freeman and Tamara Leger who are always the heros of our family… I learned from so many of you… What I can do/ am doing is to provide support to new parents as much as I can, positively and informatively.

(2) I learned how hurtful it can be when someone you expect will provide support but she/he didn't but instead gave all the negatives you can get… Personally I experienced that once from an old timer who is supposed to be knowledgable and supportive. I got it face to face…on and off throughout a day! At that time my health condition was alarmed, our family was going thru' grief from a close friend's death… so I was physically and emotionally weak. It took me a while to go back to "normal". Up till now I still don't undertand why. I guess it may be unconsious/subconscious acts from the anger of her own kid being excluded/ bullied from peers… Finally I forgave…and moved on. I am still alarmed when I see this person…but I can say the hurts is over. However, I learned from my experience- be careful of my words and how I treat others especially when I am not in so good a condition. Because the hurts may stay forever!

Sincerely
Stella

[Barbara Rodrigues]

I also post this (also my last posting for awhile) not to hear myself but to try and calify. My 'toughen up' was not meant meanly or derogatory – I apologize that so many of you took it that way – it was NOT my intention to insult you but to try and let you know some of us speak that way but it's not a personal attack. Obviously that point was not made.

I know many of you are angry and new to this – it's easy to forget the range of emotions that come in the early diagnosis. My emails were meant to say we are all alike -we have been there – we understand. Again this didn't come across I can only assume.

My intent was to neither riducule any of you – I was trying to give you some history and some background of what my friends with children with autism have gone through or done – it was not my intention to tell you what to do or how to do it. As I said you are the parents and these are your children – you must make those decisions.

You're right I don't support Chelation but that doesn't mean I don't support or offer you any guidance in dealing with ABA or the struggles in dealing with all that entails a life with a child with autism. I never attacked any of you personally or riduculed anything you said – yet I felt that I was certainly attacked – I reread my emails and I still don't understand what warrented this but I will try to be more sensitive in my wording if I return.

One of you said 'I would run buck naked singing 'God Save the Queen' if I thought that would help and I laughed not only because it's funny but 6 years ago one of my best friends said 'I would paint my bum blue and run naked through the streets of Vancouver if it would help my son'.

We may all disagree with each other but we all we have one very strong thing in common – we love our children and want to do what's very best for them. All I meant is don't let our harshness scare you – we really are a nice lot many times and we will help you in areas that we can – there are many lists that have vast info in other areas that I know many FEAT members are on but this is a designated ABA list – doesn't mean we don't want you on it if you try and do other things – just means most don't want to hear it – personally I don't care but again I am only a 'worker bee' not the ADMIN -I don't make the rules – I just skim or delete if I don't like/have no interest in what's being said but it's not my list and no there is no heirachy either – we all just try and 'pay it forward'.

Alan I hope you stay on – it was actually your apology email that inspired my first email as I felt that your feelings were hurt as were some of the other new parents (so much for that I seemed only to make matters worse).

Anyway, forgive the long email – again I apologize in that I offended anyone – that was not my intention. I wish all of you well.

Barbara
Jeremy's Mom & Advocate

[Deleted User]

at the risk of being told I like the sound of my own voice or that I am insulting someone, I will just state one more time, the purpose of this board is to discuss ABA. While I can not speak for the rest of the group, because guess what, we are all INDIVIDUALS, there is no conspiracy or hierarchy among any of us, we are NOT saying you do not have the right to search nor are we saying that you shouldn't search through alternatives, what we are saying is that this IS NOT the space to do that search.

We are not arguing that some views are better than others, we are not squashing or restricting your searches, we are not saying you have to do ABA, we are not saying that you shouldn't try other therapies… what we are saying is that this forum has certain restrictions, we try very hard to keep this board limited to that for reasons that we have tried to explain.

Its a shame that people do have to get so upset and angry because a board that has certain parameters in its discussions doesn't include their topic of interest. This board has never claimed to be an open forum for discussions of Autism issues, it is a place to discuss Applied Behavior Analysis.

One person commented in a way that has offended a few of you and perhaps in our attempts to explain the board, others worded things in ways that unintentionally offended you. That is a shame because we as participants do sincerly welcome your discussions of ABA. I am merely a participant here, I don't set the rules, I have no say in what can and can not be discussed so please don't use my words as the position of this board as ammunition to insult the positions of this board.

I'll say it again, you are free to discuss any of those topics that fall outside of these boundaries on the BC Autism chat board at any time, and many will be happy to discuss these issues with you there.

The one or two or even three people who offended you are simply participants. We are not a collective group. And please remember that while they offended you, your words of attack may be making others who have not attacked you feel exactly the same.

[Alan Campbell]

I find it immensely funny……no….sad is a better word that this group who claim to have been "in the dark" all those years ago with finding information on ABA would make another group of people feel the same way about their research into "alternatives". Shame on them!!!!!! ABA was at one time an "alternative" therapy and they should remember that.

What does General Topic Discussion mean to you? Its lovely to see that the moderator of this board was quick to jump on us for the discussion but has not put a stop to the "Senior Featsters" continuing to belittle us after we have respected their wishes and stopped talking about it on their precious site. By degrading what we do they are the ones perpetuating the conversation about a Taboo subject. I will check in to see how long they can stand the sound of their own voices. But will only use this site in the search of therapists. I only feel bad for parents who are just starting out with this only to be belittled by the "toughened" and seasoned powers that be, and who get the "instructional no".

We were only sourcing out information. How "dangerous" is that? Sadly the censors have no delete buttons on their browser. If other research doesn't interest you don't read about it. I don't take every word I read on this or any other site as gospel, but I like having the option of reading it and making an informed , adult decision. My wife and I have nothing but our daughter's best interest at heart. We would all like to believe that the practice of medicine is based on scientific principles, but at least eighty percent of currently used conventional medical/surgical procedures have never been subjected to either controlled clinical trials or double blind, placebo controlled studies. Can you imagine coronary bypass being subjected to a double blind, placebo…..who gets the sugar cube there? (and yes it is the same thing you are talking about science!!!). There is great research being done in the area of autism……and Yes! there is always a purveyor of "snake oil" out there when it comes to our well being and our illness. I would hate to see the day when I don't have the option to see both.

Many of the DAN protocols advocate nothing more than good nutrition…..the addition of vitamins and minerals that these children are characteristically deficient in (The blood and urine panels actually proved it in our case) and the use of pro-biotics and digestive enzymes to deal with intestinal issues.

I am, and will continue to be an advocate for ABA therapy. I know that it works. And furthermore I am eternally grateful to the parents that came before me and have had the immense task of establishing ABA in BC. You have done a great job!!! I am forever in your debt. But regrettably I cannot stand beside you while in one breath you condemn us for talking about something and in the other feel the need to tell us why its wrong. Science is constantly evolving. There is a reason that its called Einstein's Theory of Relativity and not "Scientific Fact of Relativity".

The argument is that we were talking about the idea of removing toxic substances from our kids bodies……How bad could that be? No one ever said "cure".

I would like to retract my earlier apology that was completely sincere at the time…..and I would like to thank all of the parents (Jen, Shannon and Dee Dee in particular) that have posted on behalf of the search for free thought and the truth. I for one will continue to research and not waste any more time arguing with fellow parents. This will be my last post here.

Elizabeth's "Toughened Up" Dad

Alan

[Deleted User]

Hello everybody
I am certainly what's has been referred to here as a "veteran" having had an ABA program for over 7 years with my son who will be turning 13 this month. At one time I was also very involved in Feat activities including organizing workshops, presenting briefs prepared by feat administration at my local school board and also to my MLA. 4,000 envelopes were stuffed and sent from my home to doctors in BC with information about early autism diagnosis. I also spoke to many families with newly diagnosed children and many of them came to my home and observed my child in therapy. I know this was helpful to those of them who chose the path of ABA treatment for their child. When my father passed away in 1999 we requested donations be made to FeatBC in his memory. This was how strong my affiliation was with Feat and it's members. Many of the members were also my personal friends until…. In 2001 I attended an ASAT (Association for Science in Autism Treatment) conference in San Diego which is the exact same association co-presenting with FeatBC and ASBC for the up coming conference. It was there that I heard and met an amazing ABA Consultant who made so much sense in his presentation and our following discussions I knew that I had to pursue his services as a consultant for my child. The "bona-fide" Lovaas consultants we had used until this time had either run out of ideas or were guessing at the programming. My son was not making great progress nor maintaining previously "mastered" skills. There was very little if any data taken by therapists under the direction of these consultants except anecdotal. I want to emphasis that these are the very same consultants that featbc still recommends to new members today. Other Feat members then retained the services of the consultant that I met in SanDiego and are confident that this was a great turning point in their child's programming. Many of these parents had also been using Feat approved "bona-fide" Lovaas consultants but felt that their child had more potential and could be doing better. We brought the discussion here to the feat chat about our fluency based ABA programs. Many of the these families were excommunicated from posting on the Feat chat because of their insistence on discussing "non Lovaas" ABA. ABA but not "Lovaas ABA". I too am shocked that new families with legitimate questions and concerns are ganged up on by "veterans" of FeatBC and this board.
I've said it before but think it's worth saying again: Don't we all have more in common as parents of autistic children than differences? And don't we have enough problems without attacking one another and being hurtful – particularly with new members?
Nancy Walton wrote:
There is a lot of pseudo-science out there. Parent testimonials, claims, philosophically good ideas. But until there is a control group-treatment group study done on the treatment, it is still "unscientific".
Nancy and anyone else who truly believes this, there will NEVER be a control group-treatment group study done on ABA treatment. It would be unethical to do so. Open your minds to ABA treatment and methods supported by single subject research and all that it can offer our children with autism. Even the local "bona-fide" ABA consultants use fluency based instruction, errorless learning, verbal behavior and other ABA methods in the programs they design for their clients. Based on previous posts on this site it seems anything is legitimate as long as you call it "Lovaas style". It’s okay though, because they have already been designated "bona-fide" Lovaas consultants.
I think it's time that new families are taught the truth about Applied Behavior Analysis. Where it originated (B.F. Skinner not Lovaas) and the different scientifically proven methods that stem from it.
I'm looking forward to seeing many parents and others who work with our children at the Newman/Gerenser/Freeman presentation next week. I have a pretty good idea Freeman stands but it would be interesting to pose some questions to Gerenser and Newman about current studies and practices in ABA.
DeeDee Doyle
deedeedoyle@hotmail.com

[Deleted User]

Rachael,

Thank you for your input. Actually, I did not ask regarding MMR. Both my son's have been vaccinated although the youngest more than the eldest.

I responded to a post regarding vaccination and I still stand by my response. If I had known then, what I know now I would have made different decisions. I did not suggest NOT vaccinating, I suggested that the poster ensure that the vaccination is mercury free,(as this has been available for over 2 years in Canada) or wait or esure the child has an acceptible immune system etc. This is a logical suggestion, regardless of Autism.

Further, I again reiterate what I said, I personally, fully endorse and advocate ABA. This does not mean that I will not look into other areas. As Canada is considered one of the most conservative first world countries regarding its medical research I prefer to investigate other sources. One may consider this is "crap" but then again I consider their opinion "crap" – we are even.

As for the "toughening up" I find it sad that to ask for support from other parents in this situation is considered "weak". Trust me a few school pricipals, teachers and dipwads in government are appetizers for me. Nor did I realize that there was a hierarchy in FEAT members and that was a reflection on the validity of opinions. Weakness to me is not having the strength to put oneself on the line, and bucking the status quo (I believe that is what we are doing now isn't it?).

One very good thing has come from this exchange. There are some people who have personally e-mailed me that are very respectful of my thoughts, process and opinions, offering support regardless of their agenda. They have helped me get in contact with my local representative, fight for ours and our child's rights regarding the funding of ABA and have instructed me on how to be part of the solution and not the problem.

[Author]

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