[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Mike & Rachel Goetz]

Dear Shannon

What with all the controversial discussion on the board about alternative therapies etc, I don't know if your original question ever got answered (about vaccinating your second child with the MMR vaccine).

Our eldest daughter was diagnosed with autism just over a year ago, a few months after she turned three. Our second daughter was 18 months old at this time, and I remember watching her like a hawk, and being extremely paranoid any time she did not give good eye contact etc. It was time for her MMR vaccine, so I asked my doctor whether she could have the shots separately, and was referred to my local health unit. They actually did not administer them separately at that time, so I went back to my doctor, who told me that there had been more recent studies to show that there was no link between the vaccine and autism, so we decided to go ahead and have it done.

Our second daughter thankfully has no signs of autism (she is now 2 1/2), but I do remember the struggle we went through – which sounds similar to yours. When your child is first diagnosed people seem to come out of the woodwork to offer all sorts of opinions on various therapies, and it can be very confusing. I would reiterate what someone else wrote in saying try one thing at a time, otherwise you won't know which therapy is giving your child results. We were impressed by the scientific basis of ABA and fully convinced of its benefits, and decided to put our energies into that (and we told well-meaning individuals this) – and to be honest, we have seen such amazing progress in our daughter's language and social interaction that it is incredible!

I don't know the circumstances around your child's diagnosis but I do know that this must be a very painful and emotional time for you. I hope you have family and friends around to support you, and if you would like to get in touch with me and talk some more, my email is abapoco at hotmail dot com.

Sincerely
Rachel Goetz

[Michelle Weis]

To Franca

Hi Franca. My computer got wiped out and I don't have your email or number anymore. Can you email me, please.

Thanks
Michelle

[Barbara Rodrigues]

Nancy and anyone else:

I did not intend for my statement of 'toughen up' to mean that you should accept insults – it was meant that you need to be aware that there will be many people (principals, teachers, social workers, etc) that are NOT going to have your child's best interest at heart – who will try and steer you wrong and you are going to need to stand up to them – to fight for your child – I know because I was the biggest wimp when this all started – you can ask Sabrina – she is the one who coached me into being strong – being powerful and to fight. This is a hard road and a long road for many of us – you are going to need that strength to get you and your child/family through – that is what I meant. I meant don't take Dave's comments so hard -he never attacked anyone personally- (sorry Dave- don't mean to keep bringing you into this)

As for our goal of helping children receive ABA – I am well aware of that – and anyone who knows me knows that I have done more than my share.

Anyway, as much as many of you may dislike the tough stance of us old timers – the benefits your kids receive now are due to that frame of mind. But I have seen the FEAT chat board change much since Auton won -we are much bigger now (thankfully)and maybe it's time for an old timer to change or move on too.

Barbara
Jeremy's Mom & Advocate

[Nancy Walton]

It's actually a blessing in disguise when other treatments are raised on this board, as that is when good discussion comes out bringing new parents up to date. Also reminds everyone of where we came from (even before MY time).

Before I begin my little monologue, I just want to thank Barb for eloquently giving us a history of feat. I am going to disagree with you on two things, but I appreciate how you wrote your peice. It was very informative for new parents. And was non-judgemental.

So here are the two things I disagreed with:

"I reread Dave's original post and I don't think he was offensive to anyone – all he said was that the vaccine topic was 'crap' and could we please not discuss it any further – and ended with thanks"

There are two ways someone could INFORM a parent about a pseudo treatment. Let's take sensory integration. Say a parent has mentioned that they have been "researching" and have decided to try sensory integration. We could say

1) SI a load of crap. The supporters of SI are a bunch of misinformed idiots who have the brains the size of peas. (sorry, I'm not as good at this as other feat members are)

or 2) SI was not only shown to be ineffective in the New York Report, it was the only therapy to be found to be, in fact, harmful to autistic children. There is no research to support it's effectiveness. You should be wary of articles that talk about "good ideas" rather than give scientific evidence of good treatment.

Do you see the difference? For a new parent this difference is vital for whether or not they stay with us. For whether or not they decide to give their child ABA therapy.

Luckily for me, there were no offensive remarks given on the chat when I was first looking into ABA. In fact, I talked a lot with Sabrina and she always took the informative approach. I think most of you could agree with me that you are here because of Sabrina's intellegent, informed explanations.

Barb also said

"I have said this a million times to newbies – if you are offended and hurt here – you better get toughened up quick – you have a child with autism and you are unfortunately going to have to endure many many things in order to help them and advocate for them."

I say, why can't we leave the "toughening up" to the social workers, schools and politicians? What happens when we give new, inquiring parents a rough ride? They go to their social workers, etc, who will tell them "yes, they are a mean lot those feat people, aren't they?" Then the new parent will waste two years until they finally meet a nice ABA person who convinces them to come back and try ABA. Who loses out??? THE CHILD.

Everytime we go through this, I get private e-mails from people telling me they were thinking of leaving our group because they did not feel it is supportive…some parents had even put ABA on hold because of our approach with them. These parents feel they can tell me this because I have let them know that I am not judging their choices or research abilities. I am simply telling them the truth and giving them the research to back it.

I would appreciate it if some of the other parents could tell the chat board what you have expressed to me. I think it is important for old timers to know the effect they can have on people.

Remember our goal: that all children have the benefit of ABA therapy. We will not achieve that if a parent wasn't "tough" enough to take our insults.

If you can't say something calmly and rationally, please e-mail feat admin or myself and ask us to stop any inappropriate discussions.

Nancy Walton

[David Chang]

Hi Everyone,

Just need a little help here, I am wondering what is the average or fair wage for a line therapist and the average wage for a lead therapist.

Last year, I was quoted $10 to $12 per hour (depending on experience) for a line therapist, and $15 to $20 per hour for a lead therapist…….has the rate gone up?

Thanks
David
jdchang@shaw.ca

[Mike & Jean]

This is a reminder to parents and professionals attending the FEAT, ASAT, ASBC conference on Mar. 12th. of the long standing policy regarding advertising/promotions/solicitation in place for our conferences/seminars/workshops.

PARENTS: We will have a table available for parents only to advertise for therapists to work on their home-based Lovaas-style A.B.A. teams and therapists who are looking to join Lovaas-style A.B.A. teams. Please note: this is for parents doing Lovaas-style A.B.A. only.

PROFESSIONALS OR AGENCIES: Absolutely NO advertising/solicitation is permitted.

Thankyou for your consideration,
Jean

[Barbara Rodrigues]

Hello Everyone:

While Nancy and Karen have said it wonderfully – I just wanted to add my opinion onto this topic. As another old timer – this board when first went up was the ONLY forum of it's kind based in B.C. or Canada. We were a small yet tight group -who formed in order to provide the only science based treatment for our kids BUT also a forum to fight for that treatment to be covered for all our kids with autism. Many have struggled and suffered in terms that you newbies will never have to see because of sacrifices that these families have made not only in terms of money but time and effort and our children have suffered too. We are trying to save your children from ever having to go through that. When I got my diagnosis there was NOTHING in terms of information and if it wasn't for FEAT members of whom I believe there was like 10-20 – my son would be in an instution right now. We have fought through more BS than you can imagine and had to defend ABA from the get go – we were riduculed – tormented – laughed at – scoffed at – had beer bottles and pellet guns shot at us (yes I did while I was picketing for treatment for kids with autism) – we have had social workers lie to us, laugh at our faces and cut off our funds mid contract – but through it all we had this FEAT board – this has been our life line and our community – our ABA community – also again I reread Dave's original post and I don't think he was offensive to anyone – all he said was that the vaccine topic was 'crap' and could we please not discuss it any further – and ended with thanks. I have said this a million times to newbies – if you are offended and hurt here – you better get toughened up quick – you have a child with autism and you are unfortunately going to have to endure many many things in order to help them and advocate for them.

Trust me I know what you are going through – we all do – we have all been there – when I started it was 'the vision glasses – the kids wear pink sunglasses and it helps some vestible type of thing – I admit I ordered the book about it from the Autism Society to read and laughed at it – sent that back – I did my research on ABA – from experience I knew Sensory Integration didn't work as my poor baby had to endure 2 years of his life regressing with that treatment and we have all been through the hoopla of Secretin where countless thousands of kids have been put through that – they have done many medical trials also even in BC only to find out – it didn't work – it was only parents testimonies and an NBC show who showed one child who was also having ABA done. So as long as you are doing ABA and another treatment you can't say that Vitamins or Chelation or whatever worked BECAUSE you are doing something with it – it could be the ABA that's kicking in – it could be – so in order for these things to be tested properly – you can't do ABA and say detoxing – that's a chance most of you would not take I am sure. Many of my friends have done chelation, craniosacral thereapy, diet, secretin, auditory integration therapy, vitamins, etc. and you know what – it never helped – they wasted thousands of dollars and some even got side tracked from how to deal with behaviors and started blaming foods, this or that rather than using the principals of ABA to deal with problems. Their kids suffered and their programs suffered and in the end they are right back where they started. But you have to make your own decisions – it's not mine to judge you – but this board does hold itself to 'science based treatment' and it's not being mean to ask you to post the topics on another board – nor does it mean we aren't sympathetic to you or your struggles – we are – we just believe in science based ABA – it's what we fought for – what we still fight for. So give us a break also.

Don't think we don't understand what you are going through or that you want to research any and everything out there – but do that – research it before you turn your kids into human guinea pigs – check everything out -trust me if they came out with a scientific proven method tomorrow I would be first in line.

Our consultant has always said people don't like ABA because it's damn hard work – other stuff out there seems to offer everything and so absolute and so easy – just like Secretin was – it all seemed so easy. But in the end it wasn't the 'cure that it was made out to be'.

We are all in this together and we are all here for one another – we have to be – our kids need us united and strong – we have a big fight on our hands – their rights to treatment and their futures.

To that end – I hope that all of you especially the new ones are attending the FEAT/Autism Society of BC conference with Dr. Bobby Newman this weekend – it will be very empowering.

Barbara
Jeremy's Mom & Advocate

[J.Graham]

Dave –

Why did you feel the need to say that???

As Nancy and Michelle have so nicely and professionally put it, this board is for ABA discussion only. Period.
That does not mean you cannot talk about other treatments other parents choose to pursue, BUT you CAN keep slamming the crap out of them in no less than 6 paragraphs!

What treatments we as parents research and ultimately decide to do to salvage our own childrens childhoods is our choice.
It is hard enough everyday living with the sadness and the rollercoaster of emotions with sometimes no hope in sight. Then to see your own little one in pain and not be able to do a damn thing about it.
This board is not for judging others decisions.

Do us all a favor and take your anger out on something or someone else.
Stick to the rules of the board Dave, anger doesn't belong here.

Jen

[David Bridges]

Karen:

Thanks!

Couldn't have said it better.

Mike: You call this 'out of hand'? Give me a break!

Shannon, Mike et al: The 'hostility' you feel here way have just a little to do with a lawsuit in which two levels of government, their lawyers and allies succeeded in conning the Supreme Court of Canada into believing that alternative therapies had as much validity as ABA.

The bottom line is: if you want to spend (I would say 'waste') time, money and effort on stuff like chelation, or witholding essential vaccines from your child, go ahead! Just understand that this is not the place to advocate for it!

By the way, any parent with an autistic child automatically has the support, compassion, etc. of this group. That does not automatically extend to the parent's choosing alternative 'therapies' that have been shown to be unhelpful at best, and sometimes harmful.

Believe me, we've all been through the tribulations you are experiencing. Pursuing 'snake oil' solutions really won't help your child or you. The plain, unadulterated truth will.

Dave

[Deleted User]

Regarding the vaccine discussions:

Some of the newer members of our board have expressed some feelings of anger or upset at how they have been treated regarding non ABA topics, I wanted to try to address this.

First let me say that we as "veterans" should perhaps deal with it in a non offensive way HOWEVER it is important to say that we parents who have been at this awhile also have interests and perspectives that those of you who are newer to this may not be aware of.

The FEAT board is restricted to discussions of scientifically proven (as in published in PEER reviewed journals) treatment. At this point in time this mans ABA. The parents who are part of this group have set up this board to discuss this only because there are many places to discuss other treatments. The autism society board is a great place to discuss alternatives.

Those of us who have been around since what I like to call the dark ages (the days when we received NO funding and were treated very poorly by the government – and yes the treatment you get now is 10x better than what we got when I first entered this realm) have been through many negative experiences. We need this realm and the powers that be set up this realm because of those negative experiences.

When my child was diagnosed, no one at the autism society would talk to me about ABA. No one would admit to knowing what it was and at my local Autism society meeting I was actually verbally attacked for showing interest in ABA.

Many of the "veterans" around us experienced much worse than me. When I stumbled accross FEAT, it was the first time someone provided me with information without consoling me for my horrible situation and giving me the sympathetic "this must be so hard for you". I was glad to finally get answers, information and to hear someone talk about science.

I'd spent so much time wading through the rest of it, I was glad to find a space that was devoted to only what I needed, information about an ABA program.

That is what this space is for, discussion of this science specifically because there are other places that discuss other treatments but it is hard to find a place that only discusses scientifically proven ABA.

There is a lot of misinformation that circulates in Autism. Even when it comes to ABA, there is good ABA and there is poorly managed, poor quality, improperly trained ABA providers. We should be thankful to have this one source of accurate information, where we can rely on the board to continue to provide us with the information on this one subject.

Please understand that we "veterans" have been through much difficulties, many challenges and dare I say times where evil prevails… we are protective of our board because it has been our lifeline. We welcome you and your discussions that are relating to the realm of this board and we encourage you to explore those other topics that interest you on other boards such as the Autism society.

We do understand your need to explore and find answers, we too were there once. But this board is for all of us, newbies and veterans, and for us that search is not relevant and carries the potential to detract from the purpose of this board. If we allow this board to be a source of information about all treatments, what will new people do when they need to quickly and efficiently find information about ABA only?

I hope this board will always be able to serve out its mandate, to cut through the crap the government shoves down our throats and provide parents with the information they need to start effective quality ABA treatment as soon as possible for their child. Because this board is here, many of you won't have wasted the time that our family wasted desperately trying to find information.

Perhaps we might be able to have some sort of automated email that is sent to new people explaining the purpose of this board? maybe we do something like this already – it has been a really long time since I've joined!!

and may I just say "welcome" to those of you who are new, welcome to our space, we are a little hot headed but that is also what makes us strong. WE have fought for our children and we continue to fight for yours. Hopefully you will never experience the things we have experienced at the hands of the government, its made us who we are, and if you are so unfortunate to experience these things, you might find yourselves in 5 years defending this board and I am.

[Author]

Replies