[Barbara Rodrigues]

Hello:

I just wanted to also add to Michelle's post. This message is delayed as I was under the assumption that our computer had the 'Klez virus' and did not want to email any outgoing messages so as not to infect anyone. Seems it's not our computer but someone with our address in their book. Anyhow…

This is in regards to the postings concerning behavioral issues and Avery. I know many times over the last years either Avery or David Chan have posted passionate posts concerning various topics – usually concerning unproven methods vs. ABA treatment. I watched as people jumped at them for their remarks attacking them for their comments. Yet when they respond back – suddenly everyone else is the 'victim'. You know I quite enjoy Avery's remarks – they are powerful, they are usually filled with his sarcastic sense of humour and they are ALWAYS filled with his belief that he is advocating and protecting not only the rights of his little girl but all our children. I have never found his posts to be rude just as I said passionate. We, not just me but all of you need parents like Avery on YOUR kids side when push comes to shove. As for being afraid of Avery's 'bite' well, you know what…if you have a child with autism, you are going to have to learn to deal with a lot, it's a tough road and believe me you are fighting for your child every day and in many forums. Now that's not to say, our chat list should be a big brawl but a little difference of opinions is a great thing.

Now believe me I don't think Avery needs me to say any of this and is probably cringing as he reads this (sorry Avery) but FEAT is made up of many people. Most people know mainly Sabrina and Jean (who of course do so very much) but many of you may not know that Avery does an immense amount of work behind the scenes for FEAT and is an extremely important member of the team and to our kids.

I think if you really read Avery's email concerning the 'behavioral issues', I think his main objective was that it was a therapist not the parent asking the questions – later it was verified that the parent knew of the post- but it was not stated at the time and I know he was concerned that the therapist was going over the heads of the consultant and the parent. We also know that it's a worry if parents have therapists running programs and behavioral issues without consultants and what a worry this. Look at the mess of the 'government run programs' for example.

And then lastly, I disagree that treatment issues can't be discussed between parents/therapists in a forum such as this as long as the parents are making the decisions and/or are discussing the decisions with their consultants. When I first started three months into our program – we had a huge problem with behaviors – Jeremy screamed and ran from the table, threw reinforcers etc. I contacted my consultant at the time and she didn't know what to do…then said she would send a behavioral data sheet up and we would keep data for three weeks and then look for the problem. Well, that wasn't good enough for me, my kid was out of control, so I happened on a chat list and there was someone else having the same problem and asking the same question. The major response from the parents was that their consultants said the first place you look when you have that kind of a problem is the 'reinforcement'. So I went off to Kelowna and bought tons of new reinforcements that weekend – viola – problem solved – one happy child learning again.

I also found my consultant Lisa by reading one of her emails on a list and telling her how much I liked it. (Course I checked her references, etc.) but it was a terrific way to really see what kind of a consultant she was before hiring her.Okay so I begged her to come to Canada:-)

I just hope Avery you will stay, you are a great advocate to our kids and you add spice to the list.

So those are my thoughts. Please feel free to flame me, disagree with me or even ignore me. Believe me I have had to deal with a lot worse.
Remember we are all bonded by the same circumstance and we are so much more powerful when we stick together. We don't have to like each other but we need to remain together as a force because we all are here to help our kids.

Thank you again for your time.

Barbara Rodrigues
Jeremy's Mother

[Barbara Rodrigues]

To anonymous:

Re: the girl hitting, etc.

You mentioned in your post that the behavior seemed to start at school and then carry home. Is the girl's EA – ABA trained and is the school implementing the procedures the consultant put forth at home in the school setting? If not, then this may be a contributing factor. I know if we don't have complete consistency when dealing with behavior issues even within our home program this is what happens.

Just a thought.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hello. Just wanted to share my poem I wrote. The Liberals cut Jeremy's funds back in September because he's over the age of 6. This poem is for not only all our younger children with autism whom we hope and pray will have a fighting chance at a future but for those lost souls with autism who never had that chance.

Barbara
Jeremy's Mom

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 seem 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 before when they were young
But without treatment – they never learned
They were never given the skills nor the abilities, it just became too hard 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 and data 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 – they warned you of this
And I fought my very best.

Then, Mr. Premier, we pleaded –
We begged for you to care
Do you see his balding 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

[Barbara Rodrigues]

Hello:

Regarding the Province story. Thank you again to Linda Cucek for her efforts to keep her son's story in the public eye. Anyway, I think you guys make a great point about the need for clarity in the article. How about a ton of letters to the editor of the Province? Keeps the story out there also.

Email provletters@pacpress.southam.ca

Just a thought.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Everyone:

Just wanted to wish everyone a Happy New Year.

I also wanted to thank Linda Cucek for sharing the important Children's Commission Tribunal document with us. I know it's very hard to have to go public in order to save your child and it's really appreciated by all of us.

Well, I am heading out for day 120. My MLA Bill Barisoff no longer answers my letters – oh, okay, he never did.

Public support though has been incredible. People are honking and waving on average 3 times every day I am out there. Lots of thumbs up and waves. Before Christmas a senior lady and her daughter stopped on Main Street and gave money towards Jeremy's treatment. Another man came to the house to drop off 50.00 towards Jeremy. Didn't even want to leave his name, just read our stories in the paper. On one cold day in December a lady asked about the story and then went on her way into the mall only to return a short time later with a cup of coffee for me.

Yesterday a guy stopped and said he was a musician/song writer. He had followed Jeremy's story -the first time and now. He said he had been writing some political songs lately. He had also thought a lot about the tragedy in Kelowna. He wanted to know if he may write a song about Jeremy for Jeremy. I said of course!

Well I just wanted to update you. Oh, and the paper did print my letter to H. Beaugrand along with another great one from a therapist here in town. (thank you Tory). Plus there were also other letters of support from the general public! So it was very amazing.

We will win someday. Hang in there everyone. Things are happening, people are coming forward, our children's voices will be heard. People like Norrah in Ontario (I hear you're a natural!) are going public and fighting strong. Thank you to all of you. Your efforts benefit us all.

Keep fighting. Take care. Give your(our) kids a hug.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hello Everyone:

Our paper printed this article last Wednesday concerning our story. It was a letter to the editor…my response follows I am not sure it will get printed.

Help for many, not just one

Dear Editor,
We can all sympathize with the Rodriguez family and their autistic child(Herald, Dec.7, Pg.A3) but at the same time, how can they expect the government to fund treatment at $4,000 per month ($48,000 a year) knowing that funds are not unlimited?
The SOS Medical Foundation in its annual report for 2001 show relative costs of various types of equipment, for example:
A Merlin event recorder for the Cardio Pace Maker Clinic costs $18,355.23, but many hundreds of persons are helped. Some $12,697.73 for a monitor defibrillator benefits scores of people and a patient lift for extanded care costs $15,154.49.
Can one individual be allowed to soak up a high percentage of available dollars when the same dollars can help innumerable patients?
Yes, it's a hard choice to make, but this has become an unfortunate fact of life.

H. Beaugrand,
Penticton

Dear Editor:

I am writing due to a very serious misconception in a letter you printed by H. Beaugrand (Letters to the Editor -December 12, 2001) regarding autism treatment and our son Jeremy.

First, let's make it clear -the British Columbia Supreme Court ruled that autism treatment for our son, for all autistic children, is as medically necessary for his health and well-being as cancer treatment or cardiac treatment is for someone stricken with those diseases.

Also it should be noted that the taxpayer WILL pay for these kids regardless. Without treatment the vast majority of autistic children end up in expensive life-long institutionalized care costing into the millions of dollars. We are all currently paying for costly ‘supports' that do not treat nor help these kids in anyway. What we are fighting for is to have that money put into ‘science based' ‘court ordered' medically necessary treatment – which at best can recover an autistic child so that they may live fully independent, go on to college, hold a job, have a family. At least, it will help many others to learn, grow and develop and live with only minimal supports and even still hold down a job, contribute to society and have a brighter quality of life.

I also want to point out that by helping give autistic children medical treatment for their disorder – you are not taking away medical equipment from the rest of British Columbia! The fact that H. Beaugrand suggests that we are is reminiscent of the bias and discrimination of Nazi Germany.

Perhaps autistic or disabled children don't deserve health dollars for medical treatment? Maybe they are not worthy? Does H. Beaugrand know how much it costs to save a premature infant? To treat cancer? To support someone in the intensive care unit? Is it alright for those individuals to ‘soak up a high percentage of available dollars'? Are our autistic children not entitled to the same rights as every other child or person in British Columbia, in Canada?

Maybe H. Beaugrand doesn't think so. What shall we do with them then? They will cost the system more money without treatment….should we maybe set up a gas chamber? Have them all march in? Problem solved…one Merlin event recorder bought. Oops! Not enough money yet. Well, who else should we choose to get rid of. Let's see number one was disabled autistic children – who's number two? Maybe the drug addicts – a huge cost on the health system…then let's see what about the elderly, the physically disabled – what about H. Beaugrand? If a disabled little boy isn't worthy of treatment – what makes them worthy?

Luckily – for all of us – we are all entitled to health care – it's our constitutional right, it's my right, it's your right and yes, it's my little boy's right.

My son's great-grandfather was one of the many who fought to ensure that right for all of us.

Barbara Rodrigues
Mother & Advocate to Jeremy

[Barbara Rodrigues]

Hello Lou:

Thank you for sharing both letters – the heartfelt letter from your wife and the unbelievable response from Richard Stewart, MLA. I of course have other words to say regarding Mr.Stewart's letter and will write him in response to his letter. I will share it with you.

I think many of us can relate to your son's birthday cake experience as our experience is so similiar. I never really forget those very sad, scarey lost years but Rachel's letter reminded me of them.

Then to get the response you got!

Anyway, I would like to share both letters with someone and if you could email me privately so that I could discuss it with you, that would be great.

email – joe_rodrigues@telus.net

Barbara Rodrigues
Jeremy's Mom

ps: CBC – Canada Now will be airing the story for sure tonight (Wednesday) between 6-7 – I was told it most likely will be after 6:30 but there's no for sure time. Sorry.

[Barbara Rodrigues]

Hello Everyone:

Well, I have finished my day 2 of my picketing. I am starting where I left off at day 100 though, so this is day 102. Just to let all of you know that public support is wonderful! Yesterday I got a honk and another person waved and a elderly lady came up and gave me a hug (she knows of our fight previously). Today likewise, a honk and thumbs up and another motorist waved and the girl at the gas station came out and offered me a hot drink. I think the Liberals (especially here in the Okanagan) have seriously forgotten how supportive the people up here were of Jeremy the last time. Well, they will be reminded. They are screwing our kids but not without public knowledge now.

Onto that, CBC – Canada Now – should be airing Jeremy's story/Broken Promises tomorrow -Wednesday at 6 pm. It will definately be provincial and MAY get national coverage! The Wednesday 6 pm Canada Now date was what I was given by the reporter on Monday so unless I hear otherwise I am assuming that's the right date. I will update you if I hear anything different.

Minister Reid was doing her spin – apparently according to her the Liberals haven't broken any promises to autistic children, I am wondering if the Liberals are using the NDP's old spin doctor's or if they've hired their own…

Well, just wanted to let you know about the story and let everyone know the public is super supportive – so hang in there everyone – someday we will win – our kids will get the treatment they deserve –

In the meantime I am on the picket line. A reminder of the Liberals betrayal to our kids.

Barbara Rodrigues
Mother & Advocate to Jeremy
A little boy who does not yet speak
But whose voice will be heard.

[Barbara Rodrigues]

Hello everyone:

First off, thanks for sharing your letter Debra. You sign off 'does anyone care what his name is?' brought tears to my eyes.

Next I have some good news!! The attached news article has just been sent out to 30!! newspapers throughout British Columbia.

THE STORY OF A CHILD AND BROKEN PROMISES

By HUBERT BEYER

VICTORIA – Note to Gordon Campbell, Premier of British Columbia: if you per chance come across this column, read it carefully. It’s the story of a mother who is desperate to get treatment for her autistic child. And after you finished reading it, send it along to your cabinet and caucus
colleagues.

Jeremy Rodrigues is seven years old. He lives with his parents in Penticton. Jeremy cannot yet talk. He has autism.

For years, Joe and Barbara Rodrigues have tried to get treatment for their boy. The treatment that could help Jeremy is Lovaas-style Applied Behavior
Analysis. The previous NDP government wouldn’t pay for this treatment because Jeremy is over six years old.

When the Liberals were in opposition, they made quite a bit of political hay about how the NDP failed to look after autistic children. Now that they’re in power, they, too, do nothing.

“Our MLA, Rick Thorpe, brought our son's case up many times in the legislature and even in public. Yet under the Liberal Government, I will be
forced yet again to walk a picket line in order to save my son's life, says Barbara Rodrigues.

Jeremy’s doctors say that Jeremy will regress without continued treatment. That means, of course, that in the long run, it will cost the taxpayers a lot more money to look after the boy.

In a letter two months ago to Chris Haynes, acting deputy minister of Children & Family Development, Barbara pleads for help.

“In fighting to save our son from the devastating effects of autism, we have used all of our own available financial resources. In order to provide our son the treatment his doctor's have said is necessary to give him a chance for the future, we have spent our savings, cashed in our RRSPs, borrowed extensively from my husband's parents.

“During the 18 months the NDP Government cut our son off from all Ministry resources, we used up whatever we could to ensure we kept our son's
Lovaas-type ABA program going,” she says in her letter.

“We sold our camper, we cut off our cable and my husband did not insure his vehicle. We went without anything but the bare necessities. We did this in order to provide our seriously disabled son the medical treatment his doctor's have stated he requires.”

To shame government into doing what was right, they set up a web site, contacted every resource set up to protect disabled children from Government neglect and harm. Barbara Rodrigues walked a protest picket five days a week, handing out pamphlets of their son's story. It all fell on deaf ears.

“When I started my protest walk in the fall of 1998,” I was informed by everyone the NDP government would not let me be out there long, definitely no longer than three weeks, certainly not through the Christmas season.

“Well, three weeks came and went. Winter set in and the winds got colder and the snow fell. Yet the government still refused to provide our young son any resources. “

But public support grew. People honked and stopped, they asked questions and listened. They were outraged with government's stance and supportive of their cause. As the Christmas season approached there came an outpouring of cash resources donated to Jeremy's treatment fund.

“So many groups gave money towards Jeremy's therapy, we were overwhelmed. One company in particular gave a huge donation of $500.00. Each person in the company donated a share of their Christmas bonus to help our little boy.
One young man, who wished to remain anonymous, donated his entire bonus of $150 to Jeremy.

She is not giving up, but realism is sapping her strength. Sometimes she feels she can’t go on.

“And then you cry. You cry because of the broken promises, the injustice, the discrimination against your child. You cry from the years of fighting to not only save your child from a devastating neurological disorder but the
fight to get help from an unyielding, uncaring bureaucratic system,” she says

“And then you take a deep breath and wipe those tears from your eyes. You trudge slowly out to the garage and carefully pull down your poster boards
from the rafters above. You dust off those walking shoes, and you do what must be done. You fight with every resource you have to save your son.”

She signs her correspondence, “Barbara Rodrigues, Mother & Advocate of Jeremy, a little boy who does not yet speak, but whose voice will be heard.”

Are you listening, premier?

-30-

Mr. Beyers can be reached at hubert@coolcom.com if you want to make a comment or maybe 'thank' him for taking the time to help. For this article not only helps makes Jeremy's plight known but all our kids struggles.

[Barbara Rodrigues]

Hello:

I wanted to thank Michelle for sharing her letter from Linda Reid. It is quite telling in the fact they are certainly not going to be providing any funding towards kids 6 years and older. It's also such a joke about 'individualized funding' being 'complex'. Even the judge said they could provide the funding almost immediately. I am certainly appalled at the Liberals about face concerning our children.

As to Pam, I think it's not only your MLA but many of our Liberal MLA's who are now too busy to get back to us or meet with us. Yet when Rick Thorpe was in opposition and our MLA, he returned my faxes and email within a day or two.

Now onto my own funding. As you know, Jeremy is the ripe old age of 7. Our funding (against medical advice) was cut down to 10 hours a week of supported child care. That funding will then be cut off completely at the end of December 31, 2001.

I have written countless letters to my new MLA Bill Barisoff, our old MLA Rick Thorpe, the Deputy Minister for MCFD, Chris Haynes, the Minister of C& F D Gordon Hogg, I have sent copies of the letters to all sorts of other Ministers and MLA's including the Premiere. I have been in contact with the Children's Commission and have filed a complaint with the MCFD regional complaints office. I have picketed the Liberal's when they came to Penticton and had an 'open' cabinet meeting and got local CHBC news coverage which went on to air Jeremy's story at the 11:00 news and the following day's 12:00 and 5:00 pm news shows. We got front page coverage of our story in the Penticton Western News Advertiser – a link was sent out to you. AND so far the Liberals are every bit as pompous, arrogant and disrespectful of our son's doctor's medical opinions and our son's medical needs. To say that I am angry and hurt with the Liberals betrayal of autistic children in B.C. is an understatement. To imagine that I am having to fight once again to help save our son is an outrage.

But the Liberals don't seem to care, we gave them the power hoping they would make good on their promises and while they kept their promises to some, they have 'thrown away their promises to our children and our children like yesterday's garbage'.

So I have no choice but to launch my public protest campaign in order to let the people of B.C. and Canada know what the Liberal's have done to not only my son but to many other autistic children.

I will set up my web site again – and I will be picketing 5 days a week every week. I plan on getting National coverage on this story this time and want all of Canada to know of the B.C. Liberals betrayal of our children.

My first day out on the picket line will be Monday
December 3, 2001 – my last day will be when our son's funding as per his doctor's prescription's is returned or when the Auton case is won in the Supreme Court of Canada.

Barbara Rodrigues
Mother & Advocate to Jeremy
A little boy who does not yet speak
But whose voice will be heard.

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