[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[David Chan]

Hi everyone,

The other night I was having this brainstorm, it doesn't happen offen, but I thought, wouldn't it be cool if we could have a separate area in the chat, to talk about how well the kids are doing. Like a progress area, or more like a brag area. Somewhere on the chat to say, hey this kids are making progress.

I don't know if my own experience is unique, but telling someone that the kid didn't wake up last night seem terribly exiting, or he's eating with utensils or all the small steps that he is taking towards being better are not really significant to other people or friends with typical children.

I thought wouldn't it be cool have a place to really brag about the kids. The people reading would really get it, and how significant those small steps are. Most of the time when we go on the chat, it's about problems that we are having with just about everything.
I just thought it would do us all a bit of good to show that all the hard work that we do with these kids have a payoff. Belive me I know how hard we all work. So just a thought, what does every one think

Dave

[Deleted User]

Here is a link to a page where my sons story is at
as follows:

My son James is on Christy Clarks webpage she is the MLA for our area – James story is the top story in our area right now.

Here is the link to Christy Clarks webpage:

I have placed the article of your story on Christy's website. Tony Assistant to Christy Clark
You can view it in the Clippings section at http://www.christyclark.com

Bye for now,

Linda Cucek

[David Bridges]

Hi there, folks!

Does anyone know of a private, ABA-friendly OT who can consult with our team regarding sensory issues? Would prefer someone on the North Shore or who will come over here. Please contact Dave Bridges at 913-3343 or e-mail me at davidbridges@home.com

[David Chan]

We are looking for volunteers to help with the
conference at SFU in September. We need
people to pick up free stuff form stores, and
other refreshments from the confernce. Call
Michelle at 882-9196 if you can help

[David Chan]

Michelle is wondering if there are any kids that
are doing phonics, and what kind of toys or
gizmos are bing used in their program. We
tried some toys but, we found that our guy was
just stimming on the toy rather that getting any
real benifit from the toy play itself. if you got a
real cool toy or gizmo that seem to work.
contact Michelle at 882-9196. or post it on the
board and we can all try them and post the
results.

many thanks

Dave

[David Chan]

Michelle is wondering if there are any kids that
are doing phonics, and what kind of toys or
gizmos are bing used in their program. We
tried some toys but, we found that our guy was
just stimming on the toy rather that getting any
real benifit from the toy play itself. if you got a
real cool toy or gizmo that seem to work.
contact Michelle at 882-9196. or post it on the
board and we can all try them and post the
results.

many thanks

Dave

[Linda Cucek]

Hi, I have been 14 1/2 years without support for my autistic son in late 1999 the Ministry of Children and Families came aboard. At this time I still have insufficient support because I have to wait another 1 1/2 years for a behavior consultant. Everywhere I turn with my son I have to go on a waiting list, this is extremely wrong.
There is no Planned Health Care for disability children.

James, will be sixteen the end of this month and
by the time the year 1/2 comes around he will be an adult. This is quite stressful and frustrating for our family. I don't feel an autistic child should have to go on a waiting list that has triple diagnosis. The bottom line is "Waiting Lists" should be done away with. Also, Gretchen Brewin, denied me my right to have the Louvaas treatment.

Linda Cucek
Jame's Mom & Advocate

[Barbara Rodrigues]

More on the waitlist discussion. If bored, delete message.

Peggy:

I just had to clarify for you my opinions once again as you misinterpreted my post.

First, let me say I am not saying that if this bill doesn't help autistic children in ABA programs then I am not supporting. What I am saying is THIS IS NOT A GOOD BILL….FOR ANY CHILD, let alone autistic children. What it is doing is not providing for the children or helping with 'scientifically proven' therapies. What this bill is purposing as I stated before is to 'dump more money into the hands of the service providers and Child Development Centers' with no accountablity to the children. As for 'Theraplay' I don't think it's useful for any child and up here they use for kids with OCD, ADHD, Down Syndrome/Deaf and from what I hear no one felt it helped yet they still use it.

Not only that, it is detrimental to parents of newly autistic children to believe that these programs will work for their children…they won't!. Science and years of foster care, doubling/tripling up on aides in school, the increase need for institutionalizations and full-time care have proven that. So no, I can't accept when a parent knownly chooses not to do Lovaas therapy IF they know all the facts. I can't change their mind but I can't support their decision knowing what they are doing to their child's future. I have seen the outcome of a young child with autism grow into the adult with autism without intervention and the term the 'living dead' really does sum it up. So no, I will not support that choice. Nothing I can do about it but I won't support it.

But the reality remains that the service providers and Child Development Centers discourage Lovaas and tell the parents untruths about what the therapy is and tell them their programs work just as well, if not better. These parents usually believe and trust these individuals so they follow what they say. The parents haven't made the choice – the professionals have.

This bill supports those very same professionals.

Let me state that if this bill was supporting that ABA be given by these same professionals in a Government run ABA program – I still would not support it.

In fact, this very same issue is coming up now in Ontario, where the Government is purposing a washdowned Lovaas-type ABA program with these very same professionals now jumping on the ABA bandwagon as there's money in it for them. So now, antiABA professionals are now saying they will provide ABA therapy—Funny, usually people will follow the money.

Also you say, we (meaning the special needs community) should work collectively for our children…well, why is there nothing in the bill for our children??? Why is there no statement about those of us who CHOSE to run the only scientifically proven method of treatment for our children in this initiative? If we are to be a collective voice where is our voice in this bill?

Anyway, as you said, we both have made choices about this bill. I believe we do need change for all children with special needs but this bill doesn't address that need. As I said, an IDEA bill would be much more beneficial for all the kids. It would be focused on each and every individual child with special needs and their unique needs. It would support the children not the service providers.

Barbara
Jeremy's Mom & Advocate

[Peggy Boon]

Avery,

Thanks for your response – my preference would be to think of this as a 'discussion'. We have both shared our choices and the reasons for them, and the obvious conclusion we can both make is that we agree to disagree. I don't believe my post was intended to offend or about being on or off topic – merely informing large groups of people about something in the most timely and efficient methods available to me.

Some choose not to support this, and again that's their choice and I respect that. However, some FEAT families have chosen to support this initiative through signing the petition, yet another has volunteered to become a canvasser…go figure.

I am abundantly clear what 'OUR' fight is about, however thanks for your reiteration.

In your last paragraph, you mention devoting your energy and resources, and about what your big picture is and that's great…again our pictures look different…no big deal…certainly nothing to apologize for.

Perhaps at some time during my work on this initiative I will meet some families who have not yet heard about Lovaas and FEAT of BC and I will take the opportunity to inform their wisdom…I will help them to find a voice and a group that already exists.

[Maureen St. Cyr]

Peggy, I normally reserve debating for usenet where it belongs, but to use the vernacular of the newsgroups, you are off topic…WAY off topic.

> The premise….there is no right or wrong in what
> families choose(for all – those who have a child
> who lives with ANY disability-not just Autism)…

Admirable sentiment. But this is FEAT, not Families Seeking to Correct All the Perceived Wrongs of Government. I won't even attempt to speak for others, but I personally do not have the energy to campaign for all the other special needs families in the province or the country. They must find their own voice and form their own group.

> In terms of what this initiative might do for
> children with autism whose families choose Lovaas
> style ABA programs – very little, if anything,
> probably nothing whatsoever…

Exactly my point — why are you raising it here? And yes I understand that there are people who suffer under the yoke of multiple disorders for their children, and for those people, ABA may not be enough, but you seem to be forwarding the philosophy that the government should just hand money to parents to pay for any — I'm sorry — quackery they might be grasping at in faint hope. If I may be so bold, OUR fight is about the government WASTING money on quack so-called treatment, and about the government refusing to fund the only treatment regime which has been scientifically proven over decades to help our kids.

>To me, this initiative is about the big picture.

Devoting my energy and resources to doing whatever I can to give my daughter a full and rewarding life IS the big picture for me. I expand my picture to the best of my abilities to do what I can for other families I've come to know with kids on the team…first and especially for those who did so much for us when we first discovered something about Ariel was different. If that is not enough for you, Peggy, I'm sorry.

Avery
Ariel's Dad

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