[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Nancy Walton]

Just a reminder about the presentation on Behavior by Sharon Baxter at the Thursday ASBC meeting in South Surrey. I think this topic is extremely important whether you are a new parent to the world of autism or a seasoned parent. It is also great professional development for therapists and teachers aides.

The meeting is at the Semiahmoo House Society
15306 24th Ave
South Surrey
Thursday Aug 12, 7-9pm

Please call Nancy at 604-538-8021 and leave a message if you plan to attend. (My computer is down until Wednesday)

Hope to see you there.

Nancy Walton

[Deleted User]

Basic and Intermediate workshops in the Okanagon?

Hello chat board members,

We are wondering what level of interest is out there for a FEAT of BC workshop in the Okanagon area? At our workshops in the past we have been approached by a few families who live in this area who have impressed upon us the need for such workshops and we would like to if possible, fill that need.

In order to come to the area, we will need a location that can seat 20-80 people, an overhead projector, tv and vcr or vcr projector if possible, someone who can organize this as well as advertise locally i.e. at parent groups etc.

If the demand is there we would be willing to come up and teach our basic workshop on the saturday and our intermediate workshop on the sunday.

Please email me directly at Michelle_Karren@hotmail.com with information and thank you!

[FEAT BC Admin]

We have posted the following so that Chat Board members have the opportunity to "meet" a very courageous father in Ottawa:

Dear Colleagues,

Greetings from Ottawa. My name is Andrew Kavchak. Every weekday at noon I walk down the street to Parliament Hill and parade up and down between the Centennial Flame and the steps leading up to the Centre Block. I carry a sign that says "Kids With Autism Need Healthcare Not Waiting Lists". I usually spend my lunch hour trying to educate the tourist public, and to speak with any journalist or politician I can find. I have been doing it for the past four months and I plan on continuing to do for a long time to come.

My son was diagnosed in December 2003 as suffering from autism. The very next day we hand delivered our application forms to the government offices to get the ABA therapy that is medically necessary for our son. We were told that we were on a waiting list. Well, here we are seven months later, and we are still on a waiting list. Yes, like many of you, we started a private home-based ABA therapy program. We applied to the provincial government under the appropriate program for financial assistance. Again, we were placed on a waiting list.

I used to be a proud Canadian. No longer. But I am so proud of you in B.C.! On June 9, 2004 I protested with my sign in front of the Supreme Court of Canada when it was hearing the Auton case. I had the pleasure of meeting several of you who came to Ottawa to attend the hearings. To me, the thirty families who got together and started the litigation as a means of last resort are nothing short of heroes. I, like you, hope that the Supreme Court judges will issue a reasonable and fair decision as the lower courts have done. As a resident of another province, I hope our provincial government will be forced to wake up and get serious about helping children with autism.

My daily protests have been interesting. I have received many kind words of encouragement and support. Recently, a gentleman in a wheelchair introduced himself to me as the publisher of a newspaper for disabled persons. He invited me to submit an article which I did. I am currently in the process of sending copies to all of the MPs and Senators inviting them to look out their windows at lunchtime and read my sign. I hope that the daily reminder that all is not well on the healthcare front will provoke some of them to
listen and then talk, and then maybe even do something. All I know is that I can't think of anything I would rather do at lunch time.

May God Bless you!
Andrew Kavchak
sdelbianco@sympatico.ca

[Evan & Janine Frewing]

Hi, My name is Evan frewing and my son has been diagnosed with "ASD". I am now looking to get on the wait lists for competent consultants (ones who work with and have experience with the Lovass system). If you would recommend YOUR consultant for a 2-1/2 year old boy's start-up program, please e-mail me at my wife's e-mail address with the contact information for your consultant. This is greatly appreciated. Thanks. http://www.janinefrewing@hotmail.com

[Nancy Walton]

Calling all Manderin speaking parents:

I am posting for a parent of a newly diagnosed four year old. Her name is Jing. She would like to get in touch with other Manderin speaking parents who have been running home based ABA programs for their children. Please give her a call, to give her some support. Even if it's just to talk.

Jing's phone number is 604-899-0896. Her e-mail address is caojing@forneednet.com

Thanks

Nancy Walton

[Lis Louwrier]

Dear All

This message comes later than it should but I want to say that I attended Lisa Wincz's ABA workshop on Vancouver Island (May 8) and it was excellent. Everyone in the audience received a lot of important and valuable information. The fact that she does these workshops for free is amazing for anyone who has or works with an autistic child.

Thanks to F.E.A.T. of BC for helping my family when our child was diagnosed over a year ago. The information we have received has always been right on the mark and scientifically solid. The money would not be available were it not for all those families who paved the way forward for us. I think there are no words to express our sincere thanks. Our son has a better life for all your hard work and tears.

All the best and a safe and healthy summer.
Lis Louwrier
Ryan's mom (age 4)

[Deleted User]

Hello everyone,

I just completed the survey that Sabrina referred to… its been 4.5 years since I found myself thrown into the world of autism. Both my children are doing well, making progress, learning, making me laugh… Their growth and change has been nothing short of miraculous!

Completing the survey reminded me of those changes, bringing up sadness and tears, heartache and pain that I had forgotten about. The sadness, the anger, it is so overwhelming! It consumes you, eats at you and changes you forever.

When our first child was diagnosed with autsim it took months for us to find out about Lovaas aba. Months of wasted time.

When I finally called FEAT, for the first time in months I spoke with someone who gave it to me straight. That person didn't encourage me to cry and then accept my child's autism, she encouraged me to fight it. She opened the door to treatment and the results have been amazing.

When we started our program, we had enough money in our budget to last 6 months, maybe one year. We figured we'd just start it and hope for the best. Six months later our second child was diagnosed with Autism.

And there was no funding.

A lot has changed – shorter waitlists (becasue many of those instructors who began working with many of the Auton case families, have gone on to become top notch, amazing, brilliant consultants) easier access to information about ABA, more instructor/therapist availability/more families doing ABA…

But one of the greatest changes that has occurred is that children under the age of 6 receive funding every month. It doesn't cover all costs but it is something. The credit for this money does not belong to the government. For those of you who are new to this battleground, please don't mistake this funding as government generosity. To put it rather crudely, they'd screw you over in a second given the opportunity! The credit lies to those who fought the battle (and keep on fighting) not just for their own children's rights but for the rights of those children yet to be diagnosed.

Its easy to be complacent when you are receiving money every month.

This is our last month receiving government funds for our ABA program. Oh yes we'll receive the oh so generous $500 a month… it will get used, in a heartbeat, but it won't even put a dent in our costs. We will soon be back to wondering how we will even make it through the next 6 months. But I am grateful that we even made it this far.

So to those of you who endured Auton, who struggled to put aside the money, who spent long nights in steering committee meetings, who sat in court filled with anger and sadness, listening to the other side and wept with the pain of what was sometimes said… thank you. My children are the benefactors of your hard work and oohhh, do they shine!

Michelle Karren
(a little mushy perhaps but sincerely grateful)

[Sabrina Freeman]

Dear FEAT-BC Discussion Board members:

The FEAT-BC executive recently met with a U.S.-based researcher — Dr. Dana Lee Baker — who has received a grant from the Canadian Embassy in Washington, D.C., to study autism policy in Canada. This apparently flows from the Auton rulings. This same researcher is also the author of an article that was used by government in the Supreme Court of Canada against the families. We are talking about someone who is in the ‘Ivory Tower’ of academe — with all the expert power the position endows — yet does not understand that her ‘power of the pen’ was used by government officials in their battle to deny uniquely effective treatment for children with autism. In fact, she was quite surprised that her article was used against us in Ottawa.

Now, here’s an opportunity for members of this group to put things right. We explained to Dr. Dana Lee Baker what needs to happen and why. Specifically, our children must be in the health care system for their core health need, just like every other child – this is not a social services matter; consultants — and the therapists who work under them — must have a fee-for-service arrangement i.e., billing numbers, so that every child has publicly funded access to health care for their condition on the same terms as children who suffer from physical disorders.

Although Dr. Dana Lee Baker may understand that we do represent many parents of children with autism, she is looking for input from as many people as possible. I urge each and every one of you to let your voice heard. I believe this an honest researcher, which means she will not ‘fudge’ the data she’s collecting, even if it does go against any preconceived notions or the agenda of her funding source. I believe her research and the paper it spawns may be damaging to the difficult struggle we’ve undertaken if this researcher does not hear from the majority of us whose children are receiving Lovaas-type autism treatment.

Please spread the word to any parent of a child with autism who is in a science-based autism treatment program. Please keep in mind we’re trying to balance what has all the appearance of a government effort to collect data that is anti-ABA.

1) For parents and primary caregivers, here is the link to the survey:
http://www.zoomerang.com/survey.zgi?p=WEB2LPCE9WN3 fllink ends here

2) The link to the government Request for Proposal for this grant can be accessed at this link:
http://www.canadianembassy.org/education/grantguide-en.asp#research fllink ends here

Regards,

Sabrina Freeman, Ph.D.
Executive Director
FEAT of BC

[Mike & Jean]

On behalf of F.E.A.T. of B.C., I would like to take this opportunity to thank those parent and professionals who donate money to our organization.

F.E.A.T. of B.C. is a 100% volunteer organization who receives no funding from any source. The time and talent is completely unpaid. As an example, we are able to provide highly effective, yet inexpensive workshops, parent groups etc. due to the committment of our volunteers. We are able to produce and mail-out our very popular and sought after new-parent packages and videos due to the generous donations made by parents and professionals. We received a donation today of $100.00 from a parent with a newly diagnosed child who wanted to thank F.E.A.T. for the help received. That money will allow us to mail-out ten parent packs/videos to new parents.

I know this acknowledgement comes a little late but, a big Thankyou to Lisa Wincz, Behavioural Consultant for donating 100% of her fees and registration fees to F.E.A.T. from her last two workshops.

Once again, thanks to everyone who helps F.E.A.T. help children.

Regards, Jean

[Deleted User]

A Generous Offer:
A church preschool in the West Point Gray area has offered to pay for support for an ASD child for 1/2 day in their preschool program. 3 year olds: Tuesday, Wednesday and Thursday AMs; 4 year olds: Monday – Thursday PMs. The family is responsible for the remainder Lovaas-ABA program costs. Preschool fees are negotiable.

The preschool has previously worked successfully with a child in an ABA program, and is amazed at the progress and potential that such a program provides. The Preschool is using funds to provide the1:1 preschool aide from their Capital Projects Fund to support this endeavour.

Contact tleger@autism.bc for more information.

[Author]

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