[Barbara Rodrigues]

Wow!!!!! This is so great!! Congratulations to everyone. Thanks so much to FEAT of B.C. most especially Sabrina who never ever let them get her down and decided to change the system to not only help her child but all of our children. Now because of that determination, dedication and strength – maybe someday soon, no other autistic child will have to bear the discrimination, the lack of funding, of treatment that our kids did ever in their lifetime.

There's so many more of you all to thank, each of you that helped so much in many ways.

Thanks especially to the families the 20 or so who back when this was all starting and funding was no where to be found – took that 5,000.00 out of your savings, your RRSP's, on your credit and helped make a change for not only your kids but so many kids. Thank you.

And last but not least thanks to the lawyers including Brigitta whom I hear is the best.

If I missed anyone it's not because I'm dishing you, just overwhelmed with the moment. Thank you to everyone. What a great victory.

Many years ago when I was fighting for funding my motto was

My name is Barbara Rodrigues
My son is Jeremy
He can not yet speak
But his voice must be heard.

Today FEAT and all those involved in this lawsuit-has given us the greatest gift- our children's voices will now be heard.

Thank you so very much.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Lisa:

I also hope that you won't let the anger of one person stop you from sharing or participating in the FEAT chat. Unfortunately, there are many who lash out for whatever reasons they may have – there are many who are not our children's friends and who are just seeking out what we say.

Posting anonymously gives people way too much leeway in the 'maybe I should think before I spew' department and something I wish the feat chat could remove. I understand that the reason for the ability was to protect the parents from the eyes that are not our friends but more often than not it's used as a shield to say hurtful, ignorant things. Or by people who want to critize the original poster and yet remain anonymous. It takes guts to post your opinion with your name attached. It doesn't take too much to post anonymously. For those who post anonymously to protect their children or their children's future, I also respect and that was the main reason for that option (I think).

FEAT is stronger when we remain focused on our cause 'medically necessary autism treatment' for all kids of every age in every venue – including school. For many parents, it's been years and years of struggles and fights against every agency and every area including medical professionals, social workers, families, friends, preschools, and then teachers/schools. So there's a lot of bitterness and resentment out there. Things are better (a bit) for the younger kids but the older children and families have sacrificed much for many years before some of you even had your children. Does that give anyone the right to be so mean – of course not. Just because someone has an autistic kid does not mean you have to like them either but we should all remain respectful and focused.

I hope you stay Lisa but good luck to you and your little guy if you choose to go.

Barbara
Jeremy's Mom (the queen of runon (sp) sentences)

[Barbara Rodrigues]

Hi Everyone:

Because unfortunately there are no regulations for anyone to call themselves 'behavior consultants' – it is often up to the parents to offer their opinions as to how 'good' or 'how qualified' a particular consultant is. Of course consultant's may give family names as references but sometimes there may be families that did not have such a wonderful story to tell hence it is great opportunity to ask about the 'consultant' over the chat site. Parents must protect their children and especially a group of children (if you are going to vouch for said consultant) by ideally getting all the information besides just the 'academics and resume'. This is done all the time on the other lists and seems to be a good way to ensure the person's character and capability. It is not usually to harm the consultant but instead to make sure that you are good and how you are with other families that you have worked for. Since it is the other families who are responding it does not breech any privacy acts that I know of. Same as if someone asks me who my doctor is and how I liked him. How Jeremy's dentist is and who is he. It doesn't concern his/her credentials but how is this person with my son relating to my own experiences and thoughts. It doesn't mean the person asking is questioning my doctor's education just how I felt that they are. Parents are realizing that behavior analysis is a powerful tool and we need to make sure that if we are allowing you access to our children and their future that you are who you say you are. It is not to discredit you but rather to protect our most precious of gifts.

My thoughts on the subject.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Allison:

I will post to the list in case anyone else has this trouble. Years ago I saw a FEAT workshop with Shelley Davis and she mentioned that for flapping a great idea was to get them to clap their hands (especially when they are young) as they get older -hands in pocket was her redirection suggestion.

Anyway, I went home and everytime Jeremy would flap – I would say 'Oh Clap – do a model prompt ' be really excited about the clapping. Well, it worked – Jeremy would start to clap instead of flap and then I guess because it wasn't so much fun he eventually stopped the flapping and the clapping. Oh, he still flaps on the rare occaison but it's easy to redirect it now. But try to get the little one to clap and be really happy about it – model it and just keep trying that for a bit.
It really works. Good Luck.

Barbara
my email if you need further info joe_rodrigues@telus.net

[Barbara Rodrigues]

This is to the Anonymous Post of July 17/2002 -08:45 am:

In response to Norrah's post of 07:38 am you state:

"Can anyone tell me how many years the government should fund my son's ABA program? Until he is recovered? Lovaas's study showed 47% of young children receiving ABA treatment recovered. Should the other 53% get 40 hours of one-on-one treatment for life?

Are the ABA methods used the same at age 3, at age 13, at age 33? Are there comparative studies to back up the effectiveness of ABA applied to older chidren and adults?"

The above remarks I am taking as your response to Norrah telling you about my son's neglect by the government to cut off funding because he is over the age of 6.

First off, in answer to your question – yes my son deserves one-on-one ABA treatment for life or until his doctor says otherwise. In the court ruling Auton 2000 – the judge plainly said that because autism cannot be cured does not mean that you do not treat the symptoms. Just as many cancer's can not be cured – you still do whatever it costs/takes to eleviate the symptoms and help relieve some of the pain. There is a child in our community who is hemopheliac and the medications to keep him healthy cost 5000.00 a month each and every month. This is not a cure but a treatment to help him live as normal a life as possible and he will require these medications every day for the rest of his life. Why then, does my child not deserve the same consideration? How dare you – a parent – put a price tag on my child's life on his future.

In answer to your other question "are the ABA methods used the same at age 3, 13, 33 – well yes the principals are but the programs, the behavior plans, the reinforcements are changed as needed as the data requires and as the child grows. I know a woman who's son was 32 when she found about ABA and he learned to tie his shoes at 33. Today at the 34, he will of course not make the gains of a child that started an ABA program at 3 years old but he is still making gains.

As for comparitive studies on older kids/adults – I am not sure anyone has put any money into research as studies show us early intervention breeds the best outcomes. It's hard enough to get funding for research into autism let alone the 'older' kids. But from our consultant Lisa Wincz's experiences and those we have heard of Dr. Vince Carbone's – we are aware of 'older' children who were never in ABA programs making significant gains when ABA was started.

As for my son, with treatment he was progressing – no he didn't recover – but as long as ABA is helping him, he has every right to have it provided for him. Something you will pleased to know has only happened by us paying privately for.

So you can worry about the made -up book burning at the ASBC and whatever else you feel like doing.

But you keep my son and his right to medical necessary autism treatment out of this situation.

As for my post concerning the ASBC – it was the protection of the FEAT board members that it was posted. To protect ABA and the rights of those members who chose to provide their children with ABA that it was posted. So that the ASBC would be a 'true' advocate for all children with autism – rather than the beaurocratic arm of the MCFD.

It seems to be that those of you on this list opposed to ABA are the fanatical, paranoid ones. You needed worry even if the ASBC is no longer – you have all those 'contractee's' on your side:-)

Barbara
Jeremy's MOM

[Barbara Rodrigues]

Hi Dave:

Thanks for the offer to help that would be great! If this petition goes through then a AGM will be held – this is where you and the other members are needed. You will have to attend the meeting and be sure our children's voices are heard via your voting power. Unfortunately, you have to attend the meeting in person so it's a bit more of hassel.

Another thing is that you have to have been a member of the ASBC for 30 days in order to vote so that's why it's important for those who aren't members to sign up quickly. As this will all come down very shortly.

To anonymous thank you for your post – to the families of the lawsuit – of course, please excuse the oversight in mentioning you all – we are certainly indebted to each and every one of you for your efforts – both for the past and in the preceding future. I know for many of you – the cost of the lawsuit was a huge commitment and many have benefited directly from your sacrifices while many of your children continue to be denied treatment.

In light of this – let's all keep doing whatever we can to fight for change/funding for all our children – regardless of age.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Dear FEAT members:

The following email came to me and I must share it with you. It is of great concern and very disturbing:

"Dear friends of ASBC, (Autism Society of BC)

I am writing you because I have been asked to contact people I know to see if you would be
interested in signing the attached requisition calling for an election of a new board of ASBC. We need 10% of the current membership in order to have this pass in accordance with the Societies Act. We need your support. Please don’t contact the ASBC office about this as the staff are not involved or informed of this as it would put them in a conflict of interest.

Apparently the AGM held on June 1, 2002 was very ugly. The net result was that the moderate
board of ASBC was overturned by a board dominated by extreme members of FEAT. As you may
know, they have long been opposed to ASBC’s policy of supplying members with a wide range of
information on autism issues and treatment. Instead they insist that Applied Behaviour Analysis(ABA)/Lovaas is the only credible treatment and that ASBC should limit the information it provides.

Events at the AGM were as follows:

Despite the fact that FEAT already had two members on the board of ASBC, elected June 2001, and had two more candidates on the slate, a significant number of FEAT members arrived at the AGM, signed on as members of ASBC and proceeded to nominate each other from the floor, with the support of FEAT aligned board members of ASBC.

The constitution of ASBC until a new one came into effect on June 10, 2002, gave the
organization no protection again stacking the AGM with instant members.

When board and staff balked at the turn of events, they were threatened with legal action and,in the case of staff, with dismissal. Staff were visibly shaken at being screamed at and
threatened by a member of the ASBC board.

FEAT had not been denied a significant representation on the board, 4 out of 15 members, if the slate had been elected as put forward. However, the events of the 1st would lead to no other conclusion then that these FEAT members don’t want input, they want control. This
would indicate that the new board plans a radical departure from ASBC’s tradition of
accommodating the wide range of perspectives within the society.

The purpose of this requisition is to hold a new General Meeting to debate the issues in a reasonable manner, in order to give the membership of ASBC the opportunity to decide on whether they wish to limit the type of information available from the society.

It is my fear that if ASBC loses its commitment to advocate for all its membership, that we will lose a tremendous asset for our families. I also believe that government funding will be lost because ASBC’s contract specifies that we provide information and support for families.

Many of us don’t really need the services of ASBC any longer, but think of the many families just reeling from a new diagnosis. They need ASBC.

Time is of the essence in this matter, if you can support this, please sign the attached
requisition and return it by July 10. You can reach me on xxx-xxx-xxxx if you have any
questions. In order to qualify to sign this requisition, a person must have been a member
of ASBC for at least 30 days."

It is my understanding that this eamail if from a former disgruntled employee of the ASBC. While I can not imagine what any FEAT board member could have done to warrent this type of assault, I feel I must respond to the above letter.

First, ha! extreme FEAT members insisting that ABA is the only crediable treatment for autism – well, let's see that's what the court said too in Auton 2000! That is also what the MCFD now states in their policies and best practices. In fact, we all know if it wasn't for FEAT of BC – no one would be getting any individualized funding. For the ASBC certainly did not do one thing to help in that regard. Why I remember that an ASBC member went so far as to go on the radio and say that kids with autism needed 'language therapy' – never promoting or backing science based treatment. The ASBC should be an advocate and support for parents of newly diagnosed children and they shouldn't muddy the waters by NOT telling them about ABA treatment and instead sending them off to have their kids wear weighted vests, massaged, dance around wearing head phones and pink sunglasses when what their children need/what is deemed 'medically necessary' is ABA treatment! What's even more outrageous is that it was my understanding that ASBC members did not stress the importance of ABA to new members while they themselves as parents of children with autism were running government subsidized ABA programs.

We as FEAT members need to insure that 'best practices' -what is fundamentally right is provided for new parents – many of whom do indeed first turn to the ASBC for guidence and support. I know that the ASBC in Quebec is totally proABA and is a wonderful advocate for parents – our ASBC should be also. Something of which for many years they certainly were not. So what I am asking each of you to do is to phone the ASBC and become a member if you are not already. You can use your visa/credit card to apply (25.00) and please get your therapists to apply also (it's only 5.00) for students. Then if this assault on the board is put through, then you can be sure to attend the meeting and cast your votes.

I know you are all very busy but remember FEAT of BC made the changes and the benefits that some of your kids are receiving and with the ASBC also doing what's right for our kids – who knows maybe someday – new parents won't have to go through the heart ache and run around that so many of us did. That someday all our children will get the treatment that they all deserve.

This can only be done by all of us sticking together and conquering one mountain one at a time.

Thank you for your time/efforts.

Barbara Rodrigues
Jeremy's Mom

[Barbara Rodrigues]

Hello everyone:

We really need some help here. I need to know what districts are giving funds to Giant Steps school. I believe it's Richmond, Coquitlam, Vancouver but if someone could post it to me or over the chat that would be great. I know Global news did a story on a few months back so it's public info somewhere. Also is anyone receiving the schools support funds to pay for ABA – in home with the ultimate goal for transistioning to the school???? We don't need your name just the district.

Also does anyone know if the school districts have indeed been given more leeway with how they distribute funds??? ie: if a child is not ready to be integrated and needs further teaching in-home?

Thanks for any and all help in advance.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Lou:

Jeremy has had some of the same issues, ie: hysterical over the vacuum cleaner, coffee grinder, blender. He still has some sensitivity to loud noises (when we go over the walking bridge over the damn – the loud water rushing and will cover his hears for that).

But what we did for the coffee grinder and blender was to give him little doses of the noise. Our consultant at the time said it was an ABA approach and I don't know if it will help your son or not but here's what we did.

Okay, for the coffee grinder/blender – we would get it all set up to go – then one of us (it was a mommy/daddy effort) would say ' Mommy's going to make a big noise' then Joe would take Jeremy into the livingroom but close enough for Jeremy to see and hear the blender/grinder. Then we would say again 'Mommy's going to make a big noise' and then count down 1,2,3 – here we go!! and start the blender. Joe would then just hold Jeremy and say it's a big noise! positive and sort of reinforcing. I would not blend or grind a long time at first just a little and Jeremy was farther away. We gradually increased the time of the blending and decreased the distance to the sound.
We also made sure to reward him for not freaking out and being able to tolerate the noise.

We did somewhat the same thing with the vacuum – bringing it out without it turned on, then telling him we were going to turn it on and make a big noise, etc. I should also mention that we stopped reacting to his screaming when he heard a loud sound and only reinforced him/paid attention when he would come out his room or was able to tolerate the sound.

As I said, we made this up our own so take it for it what it's worth.

Now Jeremy has no problem with the blender sounds, grinder or vacuum sounds. Even if we are out and standing at Orange Julius and they turn the blender on – he will be startled for a moment but there's no hysterics or running away.

Good luck.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Everyone:

Now I don't mean to be the 'wet noodle' in all of this but 1600.00 a month? That's not a fully funded ABA program at all as Sabrina said it's about 1/3 or 1/2 depending on your situation of an ABA program. The major flaw aside from all our kids 7 years and older being left out in the cold is that it's not adequate funding for the young ones either.

Let's take a look at Alberta for instance, you (the parent) send in a estimate of your total ABA costs for the year, you then get approval and pay about 5% of the costs per year. I know parents that recieved as individualized funding close to 40,000.00 per year for an ABA program THEN their children are also entitled to around 5800.00 per year in respite PLUS if the child is under 6 years old there's another fund for therapies, preschool, preschool aides.

So I guess it's nice that the government is going to fund a portion of the programs to a 'few' autistic kids under the age of 7 – but forgive me if I am not celebrating – it just doesn't seem like a victory to me. It's better than it was, yes, everyone will be entitled the same amount, etc. but our kids deserve so much more. Fully funded 'medically necessary' autism treatment.

Barbara
Jeremy's Mom

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