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[Dione Costanzo]

“Medicare for Autism Now!” Rally

Sunday, March 2nd, 2008
2:00 p.m. to 4:00 p.m.
Shadbolt Centre for the Arts
6450 Deer Lake Avenue
Burnaby

Bring the whole family! As well as lots of outdoor space and a playground, there will also be a Kid's Area set up with crafts and toys right at the Rally.

Directions:

The Shadbolt Centre is centrally in the heart of Burnaby, just minutes from Vancouver, New Westminster and the North Shore. Travel along the Trans-Canada Highway to the Kensington South exit to Canada Way. The Centre is located just behind Burnaby City Hall on Deer Lake Avenue.

Map to the Centre – http://www.city.burnaby.bc.ca/__shared/assets/Shadbolt_-_Map1759.pdf

The Shadbolt Centre is well served by public transit. The 144 SFU/Metrotown bus links the Centre and the Metrotown and Burnaby Lake Skytrain stations. For more information contact the Translink information line: 604-953-3333

Parking:
All parking at the Shadbolt Centre and surrounding locations is FREE to the public. Parking at the Centre includes 70 underground stalls and 130 parking stalls at the north end of the building.

Deer Lake Park has a number of additional parking areas including Burnaby Art Gallery, the Burnaby Village Museum and street parking along Deer Lake Avenue. Parking facilities outside of Deer Lake include Burnaby Central High School and City Hall. For special events and festivals parking attendants will be on hand to help manage traffic flow and assist in directing cars to alternative parking areas.

SEE YOU THERE!

[Dione Costanzo]

Barabara,

Thank you for sharing your poem. I will be at the Rally tomorrow and am going to print it out and post it there. What a heartbreaking story and big reminder of what happens to people who do not get the benefit of intervention. So much potential lost.

(((hugs))) and thanks again

Dione

[Barbara Rodrigues]

RE: Autism Rally

Just wanted to send my heartfelt thanks to all of you that attend tomorrow. (I am up in the Okanagan and just can't get down there). I am with you in spirit.

Those of us (oldtimers) remember all too vividly what it's like when the Government cuts funding or offers no funding – there are no sure things for our kids and promises (as we all know) are never kept.

In the Okanagan there is a whole generation of young adult autistics who were lost -no treatment – they take them out to the malls – they put them in wheelchairs so they can be 'managed' better. It is so very sad. I wrote a poem about it years ago when my son at age 6 was cut off from funding yet again. I hope that maybe it will inspire those of you who are closer to attend tomorrow and come together for a few hours to show that we are all still a force to be reckoned with.

Again I thank you for taking the time out of your busy -hectic lives.

Do You See Them?

Do you see them, Mr. Premier?
Do you see?
They're the adults and it's outing day
They're at the mall
Though where they are matters to no one –
Themselves – least of all.

They are in wheelchairs but they can walk
Maybe once some might have even talked
Now most no longer even try
Many no longer even bother to cry.

Do you see them, Mr. Premier?
Do you see?
They are adults now but children with autism they used to be
Their lives seem of so little value to us all
Why, they are only societies burdens
Not productive at all.

These days you cannot get any eye contact
Their smiles are no longer real
Some are disfigured now . . .
From years of self abuse
Some are catatonic now . . .
From years of prescribed drug use.

Do you see them, Mr. Premier?
Do you see?
They have families. They are so very loved.
They lived at home when they were young
But without treatment – they never learned
They were never given the skills nor the abilities, it just became too much for everyone
Years ago, there was no alternative to this very sad outcome.

Please look at them, Mr. Premier
Please make sure you really understand
For more than 30 years of science tell us
That what you see here today
Well . . . it never had to be.

Do you see him, Mr. Premier?
Do you see?
The future I show you was to be my son's
My child's chilling destiny
But we have found Lovaas treatment
It will change this tragedy.

Years ago he was so lost
Never learned, nor smiled or laughed.
He was not yet two when he ceased eye contact
He pulled his hair, had a bald spot
He never slept, nor fed himself
Never played, just raged a lot.

Do you see him, Mr. Premier?
Do you see?
With treatment he is learning
He is so happy. He has a long way to go
But the road is so much brighter.
There are no institutions in this child's future.

You promised to help, Mr. Premier
You said you would give treatment to all
And we believed your words
Why you shook our hands
You smiled and looked us right in the eye
We never knew it was all a lie.

Do you see him, Mr. Premier?
Do you see?
Your government cut our funds
We had to scale back his therapy
His doctor's told you he would regress
We all warned you of this.

Mr. Premier, we pleaded and we fought
Then we even begged but no seemed to care
Do you see his bald spot?
Do you see it there?
He's doing it again . . .
He's pulling out his hair . . .

Do you see him, Mr. Premier?
Do you see?
He is an adult now . . . and it's outing day . . .

Barbara Rodrigues

Thank you -Thank you- Thank you -Thank you- Thank you to those of you that fought before me – fought with me – fought for me – fought after me -fight still. You are and will always be my 'Hero's'.

[Debra Antifaev]

Well I stand corrected!
My 12 year old son tells me it was World War I and the singing began in French.
"How could you screw that up, Mom?", he said, "you are the one who told ME the story!"

I guess we ALL have a lot on our minds.

Please make an effort to come support children with Autism anyway!

See you all on Sunday!

[Debra Antifaev]

“Medicare for Autism Now!” Rally

Sunday March 2nd, 2008

2:00 p.m. to 4:00 p.m.

Shadbolt Centre for the Arts

6450 Deer Lake Avenue

Burnaby

Don’t forget the Rally folks. Take two hours out of your day to remind this Government that they have let our kids (and their exhausted families!) down. Please take a look into the face of your child with Autism and try to remember what we are fighting for.
Forget our differences for just one day.
A story goes that during World War II even the British and the Germans lay down their weapons, in the midst of battle, to sing “Silent Night” at Christmas.
Surely we can come together to cheer for a better life for our kids!!

[Mike & Jean]

This website is about Lovaas ABA only.

For over 10 years, FEAT volunteer parents have spent hundreds of hours creating and maintaining it for the sole benefit of all those who are interested in this type of intervention. Based on the numbers of families who access it – I think it's accurate to say it provides an extremely useful service. That is why we continue to do the work.

FEAT of BC does not own autism, or the internet. If you think our guidelines are not acceptable – fair enough – the solution is simple, don't use this service. Do the work and create or contribute to a website that suits your purposes. Any further posts regarding experimental or alternative treatments on this website will be deleted, as will any more insulting remarks made toward FEAT parents who have worked on behalf of ALL our children in ways that few of us will ever know.

I would like to take this opportunity to thank all FEAT parents, particularly Laurie Romey, for their enormous contribution in the last 10 years to children with autism and their families. I feel priviledged to know you all.

[Dubravka Skrijelj]

FEATBC is not providing support to biomedical approaches simply because this organization states behind scientifically proven treatments only, at this time it is Dr. Lovaas method.

I agree that we should have some organization to inform parents about the biomedical approach, and I believe that only professionals with medical background should be listened to when we want to consider any of biomedical treatments, since some of them can help but some of them can cause the damage with potential lethal consequences. I had a chance to meet a naturopath who worked for one of the DAN! doctors in USA. He told me that he will not support 90% of the treatments they experimented with autistic kids and his personal opinion is that at this point of time they are selling the “treatment of the day” at very high prices because parents will pay any price for their hope to help their children.
As long as the biomedical approach is not scientifically proven it is considered experimental and it is up to the parent to make a decision will they try any of these treatments. The treatments are not covered by our Medicare and most of them are not approved or supported by our MDs. If the doctors will not recommend some specific treatment why the parents should do it – do we have more medical knowledge than our doctors? But the question was why we have to waste the precious time because we don't get the information about some bio treatments that POSSIBLY CAN provide MEDICAL help to our children- so, maybe the College of Physicians and Surgeons should be addressed with asking this question instead of asking at FEATBC?

[J.Graham]

Unfortunately Laurie, the only time you post on this board is to diss other parents choices. That is restirring the pot.

What makes you think that the topic of Larry King’s show was not close to my heart or any other parent of a child with autism’s heart? How would you suggest Larry go over the science of anything in just one hour?
I am simply glad for the much needed airtime autism received. Can’t you be?

Congratulations on your childs near recovery, you are one of the lucky ones whose child falls into the subset of kids with autism that are not sick.
My child is not so lucky because after many, many hours of good therapy, he still cannot verbalize most of his needs.
He’s also one of the subset of kids that is sick and in reoccurring pain.

http://www.iceh.org/pdfs/LDDI/LDDIStatement.pdf

Do you think that ABA would have helped this childs ASD due to Mito disorder triggered by vaccines? What would be the science behind that?
But if she had been diagnosed properly and treated with the appropriate medical care, then ABA would most certainly have helped her catch up to her peers and yes, we would have wittnessed another recovery.
This is not news to anyone who researches biomed. DAN! Docs have known and been treating Mito disorder in kids with autism for years, with excellent results.
Does anyone really know for sure if the autism their child has is not caused by an underlying condition, not diagnosed? Especially, if after years of good therapy has provided no results?
What would be your choices then?

I’m pretty sure everyone on this board wants the same thing for their child.
Recovery for their child.
To be able to salvage some of their lost childhood.
To hear them speak again.
To have a friend.
To be out of diapers.
For the child to have a dream that you can happily help fulfill.
And for some, just to know their favorite color or see them smile instead of cry from the pain.
We are a lot stronger as parents when we stand together in Solidarity, rather than as Separatists.

It makes me very sad to have made the right choices for my child based on the research I have studied late every night, while my family sleeps, to have a few uninformed parents of kids with autism slam those choices at every chance they can.
Parents have enough on their plate every day. They don’t need to feel bad too. Especially, by people in their same situation. That’s just terrible.

As for knowing the difference between science and technology – I’ve been at this for almost 6 years and probably know the difference better than you Jemma. As for proof, have you ever looked for it? Online and basically everywhere? Have you every gone to a conference? Have you ever met any recovered kids? Are you even aware that these conferences have Lovaas speakers too?

Proof… I could attach to this post a heck of a lot of proof. But after 6 years of the Separatists not listening… why bother.
I know the science… I know all the sciences.

I would much rather help those that want my help, than convince those that don’t.

I help new parents every day including home programs, Dr.’s, taxes, support, etc.

Oh yes, and free hugs… lots of them… and a very tired shoulder to cry on if they need it..

This IS an ‘ABA Lovaas board’ and I truly respect that.

It is not a’ diss biomed’ board.

This board has quite a few members that are doing ABA treatment and biomed treatment together for their child and as of right now, there are not too many other local boards out there that cover both. We will be hoping to change that soon.
Then you will never have to hear from any of us again.

In the meantime, by not making the kind of post that was originally made, we can respect all on the board.

Jen

http://www.iceh.org/pdfs/LDDI/LDDIStatement.pdf

http://www.ohsu.edu/ohsuedu/newspub/releases/110707vaccinate.cfm

http://www.generationrescue.org/pdf/nejm.pdf

[Luke’s mama]

Hey y'all

sorry in my last post when I said

"** Most of our real autism funding organizations are not funded by government. But the ones that are will not tell you the truth at all so beware **

WHAT I MEAN IS :

MOST OF OUR REAL AUTISM AWARENESS ORGANIZATIONS/PROGRAMS not the autism funding organizations.

Please take note. That's what happens when we are so burnt out with our special kids.

See ya
Luke's very proud mother

[Luke’s mama]

Dear all parents, caregivers, professionals and fellow FEATers,

Please put aside our differences and focus on ONE thing which is to make AUTISM a worldwide awareness.

In my daily life with my child, I struggle constantly to go to the community with him not being stared at or avoided. I fought for a diagnosis when noone heard me and thankfully won.

But the enemy ahead of us is the unknown. As long as AUTISM is swept under the carpet, none of what you all propose will happen.

Stand united and remain bonded. This is a battle we are fighting here. This is global. The discrepancy in funding here and down south is sickening. We strive to be like Americans in every other factor (fashion, entertainment, etc.) but when it comes to AUTISM we are far behind.

AUTISM is not only lifelong for us, the way it remains it creates fear in the community too if we don't get the word out there and educate the general public. But that being said, there are still TONS of people out there that do NOT have autism in their family that will be out to support US and that is courageous of them. My hats off to you all because you deserve that.

Pick our battles wisely and fight the good fight because that is the only way we will all WIN.

Perhaps you could start a chat board if any of you are interested to persue discussions outside of this chatroom for other interventions? I am sure you could include a link so that all comments could be re-directed there.

I plan to go to the March Rally on Sunday and stake MY claim and stand out in that crowd. I don't just do that for me and my family but I represent all of you too because believe it or not, we are in this together.

Anyways, I have a ton of housework waiting and a preschooler calling me so cheers you all.

** Most of our real autism funding organizations are not funded by government. But the ones that are will not tell you the truth at all so beware **

Luke's mom on the roll to Rally — Yee haw.

[Author]

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