[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Deleted User]

To anon who seems upset things sometimes go unanswered on the chat.
I think as a parent who is involved in a law suit with the government I have some perspective on why "some" things go unaddressed or answered on the CHAT and while I may be from Ontario, Autism being ubiquidis, so to is guarded climate in which we sometimes live.
I do not believe there will be a true flow or disemmination of information on Canadian CHATS until the law is settled with re to universal access to effective science lovaas based autism treatment.
I read two posts on here the other day both posted as anon btw and the first thing I thought was "plants".
You may not like the reality of how we live, but nonetheless there ARE government lurkers on ALL Canadian CHATS or other types of lurkers looking for one line that might be used against the children. This IS the reality of the current day.
Hopefully the para professionals and professionals on the list will try to understand that non response may be due in part to what I am talking about.
You have the absolute right to post as anon, and as someone pointed out, even if you dont' you could use a false identity, but if parents feel uneasy for whatever reason to not respond, perhaps you could think back to this post and remember that people who are anon have gone to great lengths to discriminate and harm our children and thankfully you will never experience what we feel on a daily basis and even moreover right now while tensions in this country are extremely high.
Yes this does affect the discemination of information, and that is sad. However we are not the culprits of that climate. We did not create this climate of unease and fear.
There are options if you don't get what you need from the PUBLIC chat. You could always pick up the phone and make a call to FEAT, I believe BC has call block available too so you could still keep your identity a secret.
There will be certain types of questions that send the hairs on the back of our necks up on end and you may think thats ridiculous how could my questions be interpreted as anything other than request for information, as I said sadly, and this may not even have applied to your post for info, we may be guarded for sometime and I would hope that non parents on the list would try to understand we did not chose this climate of suspicion it has been heaved upon us by individuals who in the name of justice or whatever misguided notions they have, who have and will continue to try to stop children with autism from getting what they need, in some cases using our own words against us.
Pls try to be understanding of this, as I live it on a daily basis.
You could also always call any FEAT or email any FEAT in the US if you are not satisfied with a response to a particular post, its always an option.
I do not speak for the parents of the CHAT in this post, only for myself. I am sure though some share my thoughts.
Hopefully one day it will be a full out ABA party and we will all be happy campers with no fear and free flow of information. I will look forward to it.
n . whitney
ps. I did not spell check this so no shots on my grammer etc k kids :-)

[Debra Antifaev]

Hi everyone,

As a follow up to Nancy's post, the Autism Society of BC did not always represent all of the parents of Autistic children in BC. When I 'phone for advice in February of 2000 I was told that some people considered Lovaas ABA "invasive and cruel". (Indeed, some very misinformed people still believe that to be the case)
I almost did not start a program but, I am happy to report, I decided to research a little more and not listen to misrepresentations of very old studies.
The ASBC board is now compiled of half FEAT members and half non FEAT members. I thought this would be a great mix for the future, but the Government service providers disagreed and fought very hard to keep their "hold" on the board.
As was recently quoted on the Bill Good program, "follow the money". The Government service providers have alot to lose if people stop using their services!
On a lighter note; if you have joined the ASBC and if you have started an ABA program or are in the process, (I encourage you to do both!)please send me your information.
I am trying to maintain a list of FEAT and ASBC members. I will reward you with my awesome recipe for crab dip!

Drop me a line at
dmantifaev@shaw.ca or 'phone
604-531-1846

Thanks, Deb
Ben's mom

[Deleted User]

In response to anonymous who works with adults and who seems to be a bit upset that some/all of her questions were not answered:

I'm not sure who your employer is or what your questions were but I would like to mention that perhaps answers were not provided because most of us have children in ABA programs and we do not know anything about dealing with adults who have not received ABA.

I think it is great that you are working to broaden your knowledge of autism and ABA through participation on this board.

and for the comment about FEAT needing to work on fixing the situation of this board. THere is no FEAT regulatory body, no one controls the board. It is a free forum, unfortunatly this attracts people who like to inflame or cause problems. Many of us are highly passionate because we are so regularly abused by the system that when sparks fly the flame ignites.

that doesn't make it right though and I agree with all who have posted their disgust with the extreme negative comments.

You don't have to disrespect someone to prove them wrong.

Michelle

[Deleted User]

Re: Anonymous on Wednesday, September 25, 2002 – 09:52 am

I would like to agree with you 100%, I have posted questions, comments, and many times words of support and encouragement… but my questions have gone unanswered, and even ignored when I have stated any info about my employer, and not stated I have a child who has autism (I do not).
But I do work with/for many different people who are now adults and did not have the benefit of ABA,… no they grew up in institutions… I have stated how/why my questions were important, but have got the feeling of being unwelcome by having my questions ignored. Finally, I'd just like to say, in support of the afore mentioned anon, I too have joined this chat to support the families on it, and only hope the knowledge I gain of ABA can in some way help me support the individuals who are now adults, and did not have the opportunities everyone on this chat is (thankfully) able to pursue.

[Deleted User]

Re: Anonymous on Wednesday, September 25, 2002 – 09:52 am

I would like to agree with you 100%, I have posted questions, comments, and many times words of support and encouragement… but my questions have gone unanswered, and even ignored when I have stated any info about my employer, and not stated I have a child who has autism (I do not).
But I do work with/for many different people who are now adults and did not have the benefit of ABA,… no they grew up in institutions… I have stated how/why my questions were important, but have got the feeling of being unwelcome by having my questions ignored. Finally, I'd just like to say, in support of the afore mentioned anon, I too have joined this chat to support the families on it, and only hope the knowledge I gain of ABA can in some way help me support the individuals who are now adults, and did not have the opportunities everyone on this chat is (thankfully) able to pursue.

[David and Barbara McLeod]

Hi Cheryl,

I attempted to send this message previously but it seems to have disappeared in cyberspace. Apologies if it shows up twice.

What is the Autism Education Society? AES is "a charitable nonprofit organization established by parents of children with autism and concerned professionals. The mandate of AES is to provide education to all professionals, paraprofessionals and care-givers who touch the lives of our children."

"…it is a priority of the AES to establish a permanent, academic program at [a local university] to train Canadian based consultants and autism treatment professionals…"

Contributions to AES are tax deductible. To receive more information and/or a brochure, call (604)513-7232.

As far as the pool goes, I just rent the whole pool for a birthday party (1 hr) the same way anyone else does. We set up a welcome table in the lobby where invitees sign in, sign a large card for Alex and put donations in an AES box if they wish. If they wish to receive a tax receipt, they sign a sheet that I leave on the table near the box.

Hope that answers your questions. I'll keep my fingers crossed that the post goes this time!

Barbara

[Nancy Walton]

For Tuesday's Anonymous and other new
parents:

ASBC stands for Autism Society of B.C.

I joined the autistism parent club almost 3
years ago. At that time, I was told by my doctor
to contact featbc. I also contacted ASBC just
to get as much information as possible. At
this time, the ASBC board and some of the
people who worked there, were very
unsupportive of ABA therapy. They were
mostly unsupportive of going to USA to get
qualified consultants as ASBC claimed that
there were equally fine therapies and
consultants here in BC. Thus, many families
who do ABA left ASBC and chose to get
support from featbc.

Why was ASBC unsupportive of Lovaas ABA?
I think it was because ASBC was (and still is,
but I'll get to that later) funded primarily by the
BC govt and thus supported BC service
providers. ASBC membership includes many
service providers who's jobs are at stake if
parents turn to Lovaas ABA.

Lucky for me, I saw through their arguements
and found featbc to offer nothing but solid
scientific evidence for doing ABA with proper
consultants. Many people didn't even hear
about ABA for years, because their doctors did
not know about featbc and ASBC wouldn't tell
them anything about it. When these parents
learned about ABA, they were very angry that
they weren't told of it sooner through ASBC.

Last spring, parents who were doing ABA
decided it was time to get involved in ASBC
and we voted more ABA parents on to the
board of the ASBC. It will take some time to
undo the old structure, but I can tell you that
the ASBC now represents us. Before, it didn't.

So I urge all new parents and old, please
become members of ASBC. Sign up every
member of your household (individual
memberships). Because the non-Lovaas
service providers in B.C. want to regain
control over the ASBC and if they have a
majority, they can do this next spring. ASBC
should be in the control of parents and self
advocates, NOT service providers.

ASBC is important to feat parents for two
reasons
1) it is the first contact (if not featbc) for new
parents who need information about starting
ABA treatment as soon as possible

2) it will be influential in future decisions
regarding individualized funding (the old board
did not support this funding since it was a
threat to govt. service providers)

The question why are we angry at ASBC is a
long and complicated one. It goes deeper
than I have written. But more importantly, we
have taken steps to see that it meets the
needs of our children now and it is important
to keep it that way.

Join ASBC now. Please, for our children's
sake.

Nancy

[Deleted User]

Hello from maple Ridge!
we are parents to a 7 yr old Autistic boy, and new to the BC area.
I am now in the process of "red tape" to get funding, etc, etc… my first question is, are there any good support groups for families in the area?
thank you …….
The C's

[Deleted User]

RE: THERAPIST WAGE/EMPLOYMENT
FROM PARENTED – ha,ha on my grammatical error

Just wanted to comment on the few comments I have received already. Thanks so much.

I have kept myself anonymous not really out of choice. I would have liked to me more personal, as this is more my nature. But because of a current problems with my therapists, I don't want to offend them.

As for showing appreciation with gifts, cards, baking, etc. I too make these gestures to my therapists. Therefore, I don't feel that this is area where I need to work on. I am glad to hear that this is not an area that I need to omit. I enjoy giving to my therapists a token of appreciation.

As for my suggestion of an agency. I wasn't thinking along the lines of the government employing them. I was thinking more of a private agency that would run simular to respite does. Only private. We could still pick and choose the therapists to join our team and the therapists training would be our responsibility because of the various consultants/programs/children but the therapists would know the basics of ABA training. Anyway, it doesn't exist…I just wanted you to know that I wasn't suggesting that we have just anyone deal with our children.

Thanks again to those who replied, please keep the comments coming.

Concerned Parent

[Deleted User]

I would like to address the issue of posting anonymously. First, people have been posting that this chat board is for FAMILIES to gather and share information. Sure, families definitely come first, but please do not forget the vast number of therapists, consultants and other professionals that support the FEAT families.

Second, so what if someone doesn’t post their name. There has been talk about it taking guts to post something and sign your name to it. To me, this implies that people who don’t sign their name are cowards. Anonymity is a vital aspect of this chat board. What you forget is that people may not be hiding their names from you. People may be supporting you at the risk of receiving reticule from co-workers, friends, etc. In that sense, it is in YOUR best interest to stop criticizing them for posting anonymously. Anonymous support is better than no support at all.

Now, as you say, some people may be posting to keep their identity hidden from FEAT parents. Frankly, who cares, as long as they support you. For example, I began to post anonymously because some FEAT parents began to criticize me for who my employer was, regardless of the fact that I SUPPORT FEAT. For me, I have received constructive and informative feedback to my posts, as apposed to the “get off our chat board” attitude I received before I began posting anonymously. If you continue to reticule people for posting anonymously, you are going to force them to start to use aliases (john doe, etc.). That way, they can continue to get their messages heard, without receiving reticule for who they are, or for posting anonymously.

Finally, I would like to address the point about people posting anonymously to bash or insult others. This is disgusting, and FEAT does need to keep a better handle on this. As I previously stated, I have taken my share of bashing and being insulted. I suggest a lower level of tolerance on the administration’s part, but I do agree with the previous posts, in that people who post anonymously in order to bash or insult are being cowardly.

[Author]

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