[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Barbara Rodrigues]

Hello Everyone;

re: Dr. Sabrina Freeman's lecture – for those of you who have heard Sabrina Freeman speak publicly you already know that she is a powerful and motivating speaker. For those of you who haven't – don't miss this opportunity on Feb. 28th at SFU.

This talk will be especially helpful to 'new' parents just starting out, to old timers :) who have battled hard but it's always nice to hear it again – to all therapists and those who work with our kids but may eventually pursue other career paths such as teaching, etc. For many of us will be bombarded by people who 'don't like Lovaas' 'think we need other choices' or want to tell you an 'eclectic approach' is the best way to go – it's nice to hear the science behind what we do – the questions you need to ask when they tell you 'their way' is better and how to sort fact/science from someone's opinion or anecdote.

The main thing this lecture will give you – is knowledge to make the decisions for your child's future. For always remember that at the end of the day – we (the parents) must live with the choices that we make for our children and we will be here long after the 'experts' have moved on.

Barbara Rodrigues
Jeremy's Mom

[FEAT BC Admin]

This is a reminder post regarding the upcoming FEAT BC lecture at S.F.U.

'Autism Treatment Evaluation Lecture: HOW TO EVALUATE AUTISM TREATMENTS: Make sure your child gets what works!'

"This upcoming lecture at SFU by Dr. Sabrina Freeman is about how to navigate your way through the maze of autism treatments out there and to ensure that your child is safeguarded ineffective treatments that exist in abundant supply in the autism treatment universe. What every well informed parent needs to know is how to evaluate — on their own — the science behind any given autism treatment method. In other words, rather than relying on the opinions of others, it is far better for parents to know the basic scientific principles that make for a truly informed and savvy autism treatment consumer and advocate for their child. This is especially important in the world of autism treatment where there seems to be an annual crop of purported autism treatments. Without a reference point that is grounded in the fundamentals of the scientific method, parents are essentially traveling without a compass. How can parents choose treatments that are most likely to be effective, rather than those most likely to be a waste of precious time and resources? To this end, and to empower parents in their dealings with so-called autism "experts," Dr. Freeman will present a two-hour lecture at Simon Fraser University. Everyone who attends will receive a free copy of the lecture video for his or her home library – the lecture will be videotaped."

Location: Simon Fraser University, Academic Quadrangle Room #K9500

This FEAT BC lecture is on Saturday, February 28, 2004

How to register:

1) Fax or mail a registration form. First download and print the from this address: http://www.featbc.org/downloads/freemanlecture.pdf, then fax to 604-534-9527

2) Or, send an E-mail request to lectures@featbc.org with information on your name and how many will be with you.

3) Or, phone FEAT BC at 604-524-6956 with information on your name and how many will be with you.

[Deleted User]

Greetings All —

The "Teach Me Language Seminar" tonight was absolutely awesome. Fortunately, we were able to tape it for future facilitator use around the province.

Tonight Dr. Freeman *explained* everything: from beginning "Teach Me Language" stages to the complex and difficult such as how to navigate and build to generating original fiction, how to handle appropriate conversational detail (what *is* enough/too much information to tell a friend), building to writing original story outlines, and even more abstract concepts of money(is this item really "worth" that much) and time (time management, etc.).

It is an excellent presentation valuable for parents, therapists, consultants, teachers and even grandparents. I highly recommend that you request it from your local ASBC community group facilitator.

cheers,

tamara & anissa

[Anna Dougans]

I was very keen in attending the lecture being presented by Sabrina in West Van, but I became waylaid by the traffic 'problem'. More like a nightmare, but I digress.
I wanted to know whether or not Sabrina will offer another workshop in the near future?
Also, where can I purchase her book "Teach Me Language" and it's companion workbook?
(I had exact change ready and everything!!)
Thanks for any info.

[Anna Dougans]

I was very keen in attending the lecture being presented by Sabrina in West Van, but I became waylaid by the traffic 'problem'. More like a nightmare, but I digress.
I wanted to know whether or not Sabrina will offer another workshop in the near future?
Also, where can I purchase her book "Teach Me Language" and it's companion workbook?
(I had exact change ready and everything!!)
Thanks for any info.

[Mike & Jean]

Every so often it is necessary to review the rules of the F.E.A.T. chat board primarily for the benefit of new parents but also as a reminder to those parents and others who benefit from it on a regular basis. After reviewing the posts of the last several days it would appear that now is an opportune time.

There are six Discussion Group Rules which should be reviewed by anyone wishing to post prior to posting. They can easily be found on the website. I will review two of the rules which really need to be understood and observed by anyone wanting to be part of or continue to benefit from the F.E.A.T. chat board.

6. "The F.E.A.T. B.C. 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" behavioural tratment) for autism and related disorders. This in not an appropriate forum to discuss the latest, unscientific "cure of the day"…." Discussions, questions, or recommendations about therapies other than "Lovaas" behavioural treatment are not permitted. The F.E.A.T. of B.C. mandate is very clear – we endorse only science-based autism treatment which is currently Lovaas Applied Behaviour Analysis. This is fact, not opinion. Our children deserve nothing less.

2. "Personal attacks are not permissible in the F.E.A.T. B.C. Discussion Group. We respect all opinions even if we disagree with them."

There is a vast difference between lively debate and the uncalled for personal attacks against F.E.A.T. members posted the last few days. There is zero tolerance for it. Posting priviledges will be withdrawn immediately.

The F.E.A.T. chat board like everything else we do in F.E.A.T. is about parents helping parents. We are all volunteers who help each other for the common good. This is the F.E.A.T. culture. How we choose our rules, our mandate and how we choose to organize is our business. Access to the F.E.A.T. chat board is a privilege not an entitlement. The F.E.A.T. mandate has served people with autism and their famililies in B.C. extremely well. Approximately 500 children under the age of 6 receive $20,000 a year and 1500 over the age of 6 receive $6,000 a year as a direct result of the Auton/Anderson litigation. Our family is one the thirty families that made this a reality for every B.C. family. I am honoured to be part of such an extraordinary group of parents who had the courage, strength of character and collective mentality to look beyond their own grief, their own debt, their own child's need to secure justice for all children.

If this kind of culture doesn't do it for you – create your own. Tammy Fazio, et al. – use your collective energy and passion to build something good, something worthwhile that will help other parents. Create your own website, your own chatboard, make your own rules, endorse whoever and whatever you want. F.E.A.T. of B.C. doesn't "own" autism or autism treatment, unfortunately there's plenty to go around. Make the "choice" to create something that works for you and hopefully others. Go for it! Be prepared though for hours and hours of hard work. Make sure your motives are about helping kids, because it you're looking for recognition or just a plain old , thankyou, you'll be sorely disappointed, because you need to know that "Gratitude is the shortest lived emotion." and that "No good deed goes unpunished."

Thankyou F.E.A.T. parents who everyday work to ensure every child, not just our own get what is their right – medically necessary, science-based autism treatment.

Jean

[Monika Lange]

I’m really fed up with all this stuff I’ve heard over the years about “choices” in autism treatment. This term is a wolf dressed in sheep's clothing and new parents should be aware of that. There is no choice, because there is only one scientifically proven treatment. This B.S. line is perpetuated by those desperately trying to hold their head above the waters of obsolescence. If you choose to modify Lovaas ABA then you no longer have scientifically proven treatment. Furthermore, “choices in treatment” is a line I’ve had thrown in my face over the years by, without exception, so-called experts such as Gateway, POPARD, and Cabinet Minister Linda Reid. For instance, POPARD, during a school meeting about my son and in an attempt to make me look uninformed, told me sarcastically, “Oh, come on, there’s more than ONE treatment, and parents should have their choice.” To which I responded, “If that’s true, then why are you hassling me about mine”. Saying there are choices in autism treatment is inaccurate. If your neighbour wanted to treat his child’s leukemia with aromatherapy would you not have objections? Likewise, FEAT parents have strong feelings about what constitutes bona fide treatment (founded well on science), and they object to those who would pass off qualitatively inferior and unproven products off on our children and the rest of the children in the province. And make no mistake about it, autism treatment (whether you get the real thing or something passed off as it) is a ‘product’ and treatment is a money-making business. Keep this in the back of your mind when ‘choosing’.

[Stephen Paperman]

My first reaction to Ms. Fazio's latest posts was to get angry. Attacking Beverly Sharp and Barbara Rodrigues in one week is really just too much for me. I have seen enough of these two women in the news and in the official record to know that few people have ever done as much for the greater good, especially at the expense of their personal needs and the needs of their families. I would dearly love to tear a strip off you, Ms. Fazio, but I will refrain from doing so in the spirit of this board–which is families helping families and not engaging in personal attacks.

Now to the greater issue. It is clear to me that there is a group of families who prefer an unproven field of ABA therapy known as fluency over the scientifically proven field of Lovaas-ABA. And please don't shoot the messenger, these are simply the facts. Lovaas has a wealth of documented scientific evidence to back up its effectiveness in treating autism. Fluency does not. This means, simply and truly, that fluency is an experimental treatment protocol. Until there is scientific evidence–and not single case studies, please, which are useless–then we have anecdotal evidence at best. To those people who wish to treat their children with an unproven protocol, I say, good luck. I recognize that someone has to be out on the bleeding edge testing these things, but I cannot in good conscience let it be my family. If and when the evidence backs fluency, I will re-examine my stand, but for now, I'm perfectly satisfied with Lovaas, thanks very much.

It has been my belief since I joined this organisation that F.E.A.T. of B.C. stands for evidence-backed early treatment, not any treatment begun at an early age. People who want to explore alternative and unproven therapies such as floor time and diets have the Autism Society, which seems to take no stand regarding science or evidence, and just lets everything be thrown against its walls.

So Tammy, I'm sorry, but maybe F.E.A.T. just isn't for you. And if you ever want me or anyone else with an open mind to listen to what you have to say, I suggest you start by citing peer-reviewed articles and research instead of attacking people who have paid their dues, and YOURS, in spades.

[Deleted User]

Barbara – you clearly did not understand the point that I was trying to make – however – anytime a point is made on the Feat website that does not suit the tastes of the very close knit group – you guys are the ones getting defensive. You and I both know that Bev was clearly talking about ABA – fluency based autism treatment (you will remember all the discussions surrounding this very issue last year, no??) Bev came UNINVITED to a lawsuit mtg I attended last year and told us all we were harming our children!!! HARMING OUR CHILDREN (as she sobbed)!!!! Is that mature and intelligent?? Please!!! – she did not have a clue about the treatment my daughter was getting or anyone else in that room for that matter (maybe just maybe it is even better that Lovaas!!). My husband and I are spending thousands of dollars on treatment for our daughter and she is doing fabulous (oh, and just so you know, WE are footing the bill for that). I, as other parents with treatments other than Lovaas deserve respect also. This is NOT the first time nor will it be the last time other treatments have been put down on the chat. I wanted Bev to respond to what she knows about ABA – fluency based treatment and how she feels that it to be inferior to Lovaas. Can she not simply write a notification for the upcoming seminar without those needless remarks. I have never nor will I criticize Lovaas style ABA therapy as I respect all who have chosen it. I wish for people to respect our chosen treatments WITHOUT negative comments constantly being said "between the lines".

[Barbara Rodrigues]

Tami:

Whoa a little defensive or what? Bev's post was not at all insulting nor disrespectful. And don't forget this list is a dedicated ABA list – that's what we all do here – we implement science based treatment for our children.

While I did not find Bev's post disrespectful – I do find yours to be.

Bev has been one of the core group of FEAT parents who worked very hard advocating for not only her daughter but many of our kids. She is one of the original lawsuit plaintiffs and she has spoken before the NDP (back when they were in power) and did a lot more than I even know about – she helped in 1998 get those of us just starting out and far away in the hinterlands set up on this very list. I gather your child is younger and if you are receiving funding for that child right now – it is because of FEAT of BC parents and in part Bev Sharpe that you are.

Bev is a single mother who has worked hard to fight for her child and many of yours. She is a woman of immense integretity, maturity and intellect. Your comments were completely uncalled for.

For those of you who weren't here back in 1998 – I wrote/spoke about Bev at a town meeting here in Penticton – below are my comments concerning Bev Sharpe (re: I was told FEAT of BC were fanatics)

Speech to MLA Rick Thorpe – FEB 1998

Before I go, I just have to tell you about one of these fanatical FEAT mothers whom I talked with last week. She is a single mother with a 3 1/2 year-old autistic daughter and a six-year-old son. She works full time. Her husband left her two weeks after her daughter's diagnosis. She is running a home-based Lovaas treatment program for her daughter. Her daughter is now saying ten words after seven months of treatment. I know this for a fact as I had the pleasure of listening to her on the phone.

To support her daughter's treatment, because the government refuses to, she rents out part of her house to two strangers. She has to share her kitchen, bathroom, living space. On her lunch hours, she tries to do some sort of lobbying to get this treatment funded by the government, such as faxing letters to government officials, speaking at meetings.

On the night I talked with her, she had just got back with her kids from the park – 'cause kids need to play too. So you can imagine this woman's plate is more than full. Yet the night she called me – she asked for no pity for herself, she complained not of her broken marriage but instead offered advice on how to keep mine together. She did not deny her daughter's autism but accepted it as her uniqueness. Yes, she was adamant about the Lovaas autism treatment because it was working for her daughter and was giving her a chance.

That night she called to offer me support, to tell me that my son, Jeremy was lucky to have a mother like me- who won't accept the inadequacy, the uselessness, the hopelessness that was all the government funded programs had to offer my autistic son.

She listened to me rant and rave about the ignorance, the arrogance, the belligerence that I have encountered here in the Okanagan. Then she told me that she had to go- bath the kids- try and get some sleep. As you can imagine, her day is long. She told me to call her anytime that I needed someone to listen.

Before she hung up, she said she would say a prayer for my son and our family. She told me not to give up hope.

I would like to say if that's fanatical… I can only aspire to be so.

Barbara Rodrigues
Jeremy's Mom

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