[Barbara Rodrigues]

Hi everyone:

I will be on CBC daybreak radio at 715 am tomorrow morning (for anyone up here in the Okanagan) if you wish to listen.
This is in regards to the recent FEAT press release and of course the Supreme Court of Canada hearing.

To those of you in the trenches – our hearts and prayers are with you in Ottawa. May justice finally be served for our kids and may this be the final victory for all of you at the end of a very long, very uphill road.

Thank you for never, ever giving up.

With you in spirit.

Barbara Rodrigues
Jeremy's Mom

[Barbara Rodrigues]

Hello Everyone;

re: Dr. Sabrina Freeman's lecture – for those of you who have heard Sabrina Freeman speak publicly you already know that she is a powerful and motivating speaker. For those of you who haven't – don't miss this opportunity on Feb. 28th at SFU.

This talk will be especially helpful to 'new' parents just starting out, to old timers :) who have battled hard but it's always nice to hear it again – to all therapists and those who work with our kids but may eventually pursue other career paths such as teaching, etc. For many of us will be bombarded by people who 'don't like Lovaas' 'think we need other choices' or want to tell you an 'eclectic approach' is the best way to go – it's nice to hear the science behind what we do – the questions you need to ask when they tell you 'their way' is better and how to sort fact/science from someone's opinion or anecdote.

The main thing this lecture will give you – is knowledge to make the decisions for your child's future. For always remember that at the end of the day – we (the parents) must live with the choices that we make for our children and we will be here long after the 'experts' have moved on.

Barbara Rodrigues
Jeremy's Mom

[Barbara Rodrigues]

Tami:

Whoa a little defensive or what? Bev's post was not at all insulting nor disrespectful. And don't forget this list is a dedicated ABA list – that's what we all do here – we implement science based treatment for our children.

While I did not find Bev's post disrespectful – I do find yours to be.

Bev has been one of the core group of FEAT parents who worked very hard advocating for not only her daughter but many of our kids. She is one of the original lawsuit plaintiffs and she has spoken before the NDP (back when they were in power) and did a lot more than I even know about – she helped in 1998 get those of us just starting out and far away in the hinterlands set up on this very list. I gather your child is younger and if you are receiving funding for that child right now – it is because of FEAT of BC parents and in part Bev Sharpe that you are.

Bev is a single mother who has worked hard to fight for her child and many of yours. She is a woman of immense integretity, maturity and intellect. Your comments were completely uncalled for.

For those of you who weren't here back in 1998 – I wrote/spoke about Bev at a town meeting here in Penticton – below are my comments concerning Bev Sharpe (re: I was told FEAT of BC were fanatics)

Speech to MLA Rick Thorpe – FEB 1998

Before I go, I just have to tell you about one of these fanatical FEAT mothers whom I talked with last week. She is a single mother with a 3 1/2 year-old autistic daughter and a six-year-old son. She works full time. Her husband left her two weeks after her daughter's diagnosis. She is running a home-based Lovaas treatment program for her daughter. Her daughter is now saying ten words after seven months of treatment. I know this for a fact as I had the pleasure of listening to her on the phone.

To support her daughter's treatment, because the government refuses to, she rents out part of her house to two strangers. She has to share her kitchen, bathroom, living space. On her lunch hours, she tries to do some sort of lobbying to get this treatment funded by the government, such as faxing letters to government officials, speaking at meetings.

On the night I talked with her, she had just got back with her kids from the park – 'cause kids need to play too. So you can imagine this woman's plate is more than full. Yet the night she called me – she asked for no pity for herself, she complained not of her broken marriage but instead offered advice on how to keep mine together. She did not deny her daughter's autism but accepted it as her uniqueness. Yes, she was adamant about the Lovaas autism treatment because it was working for her daughter and was giving her a chance.

That night she called to offer me support, to tell me that my son, Jeremy was lucky to have a mother like me- who won't accept the inadequacy, the uselessness, the hopelessness that was all the government funded programs had to offer my autistic son.

She listened to me rant and rave about the ignorance, the arrogance, the belligerence that I have encountered here in the Okanagan. Then she told me that she had to go- bath the kids- try and get some sleep. As you can imagine, her day is long. She told me to call her anytime that I needed someone to listen.

Before she hung up, she said she would say a prayer for my son and our family. She told me not to give up hope.

I would like to say if that's fanatical… I can only aspire to be so.

Barbara Rodrigues
Jeremy's Mom

[Barbara Rodrigues]

Hi:

I think it is great that parents of recovered children want to share their stories – I think it inspires those just starting out and encourages us all. I know Catherine Maurice’s book got me through a lot of early rough times. That said, I just wanted to say a few things regarding some of the ‘inferences’ in the recovery topic post. This may be just an oversite but some of the wording seems to imply that the onus is on how a good a parent you are as to if your child will recover or not.

This is simply not true – for I know many parents, myself included, who have made my own materials – stayed up all night making materials –going over data– searched the internet – bought every book I could find and gone far and beyond to find the ‘right’ consultant. In fact, my first consultant, who was totally useless and did not have enough training, went on to aide in the recovery of another child.

I along with my best friend have flown (even though I have an extreme fear of flying) across Canada and the USA to Los Angeles and Miami to attend workshops by well known behaviorists including Dr. Lovaas. In our ‘downtime’ from the workshops we would run all over looking for ‘reinforcers’ so that we could maintain the ‘funnest house’.

I have had great consultants who again saw ‘recovery’ in other children. I have been the follow through queen – redirecting and dealing with things long after a child who excelled in ABA had to be watched for.

My friend and her husband left B.C. for Alberta to find treatment and funding. Her husband left a very prestigious job and had to put into upheaval his very important life’s work to relocate. She left the only city she ever knew –leaving behind her family and her friends to move to a city where she knew no one. These parents went through hell and back for this child –hiring the worlds best and brightest to work their son, yet he did not recover.

My husband and I have sold our camper, lost all our savings, cut out our cable and at times cut the second vehicle insurance (so this poor man who works 16 hour days – 6 days a week now had to walk 3 kms to work at 4:30 in the morning). We have gone without any extras like dinner ordered in, professional hair cuts, new clothes/shoes. At times when my husband was out of town after his 16 hour days – he had to go without supper so that we could pay for our therapists wages when there was NO money to be had.

I have seen friends work harder than many of you could have ever imagined to deal with highly self injurious behaviors or to get a child toilet trained. I have seen the blood (literally), sweat, bruises and tears of mothers as they try to deal with these severe behaviors.

And yes, maybe if the kids were younger when they started that might have helped but I know kids who started at 2 and didn’t make it. And yes, finances are getting better for our kids and yes, our kids will hopefully have a chance at an independent life with continued ABA therapy.

But please don’t infer that because your child recovered – you worked harder, stronger or better than those of us who have struggled and continue to struggle to help our children along this road.

Because as we all know – not all children in ABA do recover – it’s the luck of the draw – Lovaas himself said he could not even tell which child would make it – and he never once said one child recovered because the parent’s cared more than the other set.

Because if love alone could cure autism – none of us would be here right now.

So yes, it’s important to be vigilant in your child’s recovery if young and in their continued success if they haven’t recovered – but please, please do not imply –especially to the newer parents that if their children are one of the ones that doesn’t make it to the end – that it’s because they didn’t care as much, give as much, do as much or sacrifice as much.

Barbara Rodrigues
Jeremy’s mother

[Barbara Rodrigues]

Hi Jenn:

A while back a mother on the me-list started using ABA with her son who was 32 years old. I remember hearing from her that he was making improvements and had in fact learned to tie his shoes at the age of 33.

If you had seen Dr. Foxx when he was here at UBC – he started working with a man who was very self-injurious – along with many other things – including being blind – and he made amazing – I mean amazing progress.

The main thing for the mom is to find a consultant who is very qualified and has worked with many older people. That's probably going to be the hardest part for the mom – also the staff in the home would have to be very willing to be trained and be willing to work very hard and to keep data, etc.

I wish this mom all the best of luck – her son's life could be so improved with the use of ABA. It's never too late, never.

Barbara Rodrigues
Jeremy's Mom

[Barbara Rodrigues]

To Anon:

Isaac is the Administration – this is FEAT's – therefore his forum – he clearly stated that Paperman's post was okay.

As for name calling FEAT – PLEASE – we have heard it all before – don't you think we know what we have been called – what they say about Sabrina and many parents who fight for this medically necessary funding – even now. Years ago when I found FEAT – they were called 'fanatical parents – who treated their kids like robots – When I started doing ABA – the 'experts' here told other parents that they couldn't do that to their children – that it was too structured, too cruel – yet now they happen to be an EIBI service provider!!

People may forget but for years FEAT tried to get Government to listen – they met with the big wigs brought the science to back our treatment options – we have all written thousands of letters/emails – many have been forced to go public to get attention – many have been forced to move to Alberta to get their children treatment.

People still come on this board – our board – and riducule and attack us or try to justify themselves.

Yes people have called us names before Anon but what's worse is these government officials/employees have denied our children funding, treatment, cut off our funding to punish us for court actions taken by FEAT, made us mortagage our homes, cash in our savings and RRSP's, sell our belongings and borrow and beg for help for our children struggling with a horrible neurological disorder.

So we have every right to describe the 'whole' as we see fit -as Stephen Paperman saw fit – our children and their futures wear the scars of this fight.

So stop making this about you and your feelings – this is about our children and what the courts and the medical professionals say our kids deserve -this is about our kids struggles – our kids rights – our kids lives.

If you don't like the way we talk then sign off.

Barbara Rodrigues
Jeremy's Mom & Advocate

[Barbara Rodrigues]

To Anon in regards to Stephen calling persons hacks, etc.

While I do not run the rules and I am sure the Administration or Sabrina will step in where needed – Stephen did not personally attack anyone – he globally made a statement – one that many parents whose children have been harmed by these so-called experts will agree with. WE HAVE ALWAYS BEEN FREE TO EXPRESS OUR OPINIONS AS LONG AS WE DO NOT PERSONALLY NAME NOR SLANDER INDIVIDUALS (this is my understanding). We as parents are certainly not going to sit here and not say what we feel nor think about certain groups. Stephen did not personalize nor point out any one person nor did he name a specific name so I see no offence, but then again I don't run this board so it's not up to me or you anon to decide those things.

Stephen was trying passionately to save new parents from the horrors and lost years that some of our children have been through at the hands of these so-called experts. I see only goodness in that.

Barbara Rodrigues
Jeremy's Mom and Advocate

[Barbara Rodrigues]

Hey Everyone!!! Don't forget to sign up for this workshop. We are extremely lucky to have the honour of hearing Dr. Newman speak for such a low price and without having to incur the extra costs of flying to the United States to do so.

If you register quickly you may still be able to receive the new book by Dr. Newman.

FEAT of BC is unable to afford to bring these well known speakers up so we are lucky that we have someone that is willing to do so. Let's show our support by attending!!! This will be a great workshop for both parents and therapists and anyone who is working with a child/adult with autism.

Hope to see you there!!

Barbara

Reminder – to Vancouver area parents and agencies

Dr. Bobby Newman – Do The Right Thing! workshop – Fri. 24 October, 2003.

The first 100 paid registrants receive a free copy of his latest publication – Graduated Applied Behavior Analysis.

Check website for details http://www.ArbutusCoast.com , phone 403-394-9470, or fax 403-394-9471

Arbutus Coast Presentations, Inc.

214- 905 1st St. South, Suite 439

Lethbridge, Alberta T1J 4M7

403-394-9470

403-394-9471

ArbutusCoast@shaw.ca

ArbutusCoast.com

[Barbara Rodrigues]

Avery:

What a beautiful post. I too am in tears. Happy Birthday to your little girl, Ariel. May her journey continue forward with great joy and promise.

Your wonderful words remind me that when we thank those that have helped – we tend to forget that it is you that was behind/the author of the many powerful FEAT newsbriefs and you that helped write or condense some of FEAT's most powerful words in this long fight for our children.

Happy Birthday to your little angel. Thank you for sharing your gift of words with us to not only inspire and bring hope but also to empower our children's stories and their plight to the public.

Barbara

[Barbara Rodrigues]

Thanks for posting the radio show, Isaac. Jean – you were eloquent and informative and amazing (as usual). Thanks for making the time to keep the word/story out there for everyone.

I look forward to your victory speech when this is all over.

Barbara
Jeremy's Mom

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