[Barbara Rodrigues]

Re: Success/brag stories

David:

I think that is an excellent idea! I don't know about everyone else but when I started, I used to search the web for success stories and clung to them for hope. Now when I am down, it's great to hear of both great quick breakthoughs of the younger kids but also the breakthroughs and achievments of the kids still doing programs after a few years. It gives you hope for the future. Reminds you that for some of us, this isn't a race but a marathon and to keep your eye on the ball, stay focused and keep moving toward your goal- your child's personal best. It might even be a neat idea to initially give a brief overview of where the kids were when they started ABA and how they are now.

Barbara

[Barbara Rodrigues]

Hi Everyone:

Just wanted to update you on our search for getting Jeremy into school here in Penticton. I went to a forum about school options – they had 3 Christian schools there, the homeschool group and a private school.

When I approached the homeschool representive, inquiring if we (Jeremy and his aide) could participate in their outings/field trips – I got a cold reception and she said she would have to ask her group – but I definately got the sense she felt I had something catchy so I didn't pursue it.

I approached another Christian school and the principal seemed somewhat receptive as long as we provided our aide. She agreed to meet with me, we discussed Jeremy, his program etc. She was receptive but it has to go before the teacher and the board. We hear back from her sometime in July.

In the meantime, I found out that we had quite a large Catholic school in our community. Joe and I are both Catholic so I applied there. I got an application, applied as a Catholic (nonpracticing) and wrote Jeremy's disability and a long letter outlining his autism but the fact that he is a gentle nonviolent little boy, follows directions well, been in a program for 2 years and we would supply the aide. I said we were willing to meet with them to discuss the matter further. That we were willing to attend on a trial basis etc.

I sent the letter off….never heard from anyone for 3 weeks…so I called. I was told 'No they are full and need to keep spaces for parishner families…..'He also mentioned they are not equipped to deal with special needs, when I started to say , well, we – he cut me off, said,'I know you addressed that in your letter but we are full – we have 3 parishes that we serve!' Something about how defensive the principal was set my radar up. I quite frankly didn't believe him.

So……I sent my therapist to the school the next week, she applied, as a nonCatholic with a little girl for Kindergarten….when she dropped off her application, this past Monday, she was told they would let her know within the week…um….I guess parent's of autistic kids don't rate a call back even after 3 weeks.

Today, she was called and told that her daughter was accepted. Needless to say I am truly angry. I was lied to, told in no uncertain terms there was no room – no one asked to meet with us, no one was honest with us, no one said, can we meet Jeremy and see how he does, etc.

I am aware that they don't have to accept our son, but a little honestly goes a long way, a little courtesy a lot more.

Anyway just venting. To top the morning off, the Income tax just said they are going disallow our income tax expenses.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

More on the waitlist discussion. If bored, delete message.

Peggy:

I just had to clarify for you my opinions once again as you misinterpreted my post.

First, let me say I am not saying that if this bill doesn't help autistic children in ABA programs then I am not supporting. What I am saying is THIS IS NOT A GOOD BILL….FOR ANY CHILD, let alone autistic children. What it is doing is not providing for the children or helping with 'scientifically proven' therapies. What this bill is purposing as I stated before is to 'dump more money into the hands of the service providers and Child Development Centers' with no accountablity to the children. As for 'Theraplay' I don't think it's useful for any child and up here they use for kids with OCD, ADHD, Down Syndrome/Deaf and from what I hear no one felt it helped yet they still use it.

Not only that, it is detrimental to parents of newly autistic children to believe that these programs will work for their children…they won't!. Science and years of foster care, doubling/tripling up on aides in school, the increase need for institutionalizations and full-time care have proven that. So no, I can't accept when a parent knownly chooses not to do Lovaas therapy IF they know all the facts. I can't change their mind but I can't support their decision knowing what they are doing to their child's future. I have seen the outcome of a young child with autism grow into the adult with autism without intervention and the term the 'living dead' really does sum it up. So no, I will not support that choice. Nothing I can do about it but I won't support it.

But the reality remains that the service providers and Child Development Centers discourage Lovaas and tell the parents untruths about what the therapy is and tell them their programs work just as well, if not better. These parents usually believe and trust these individuals so they follow what they say. The parents haven't made the choice – the professionals have.

This bill supports those very same professionals.

Let me state that if this bill was supporting that ABA be given by these same professionals in a Government run ABA program – I still would not support it.

In fact, this very same issue is coming up now in Ontario, where the Government is purposing a washdowned Lovaas-type ABA program with these very same professionals now jumping on the ABA bandwagon as there's money in it for them. So now, antiABA professionals are now saying they will provide ABA therapy—Funny, usually people will follow the money.

Also you say, we (meaning the special needs community) should work collectively for our children…well, why is there nothing in the bill for our children??? Why is there no statement about those of us who CHOSE to run the only scientifically proven method of treatment for our children in this initiative? If we are to be a collective voice where is our voice in this bill?

Anyway, as you said, we both have made choices about this bill. I believe we do need change for all children with special needs but this bill doesn't address that need. As I said, an IDEA bill would be much more beneficial for all the kids. It would be focused on each and every individual child with special needs and their unique needs. It would support the children not the service providers.

Barbara
Jeremy's Mom & Advocate

[Barbara Rodrigues]

Peggy:

I wanted to respond to your post concerning the 'waitlist' initiative especially considering this was also in our local paper so I had a chance to better understand what the outcome of this purposes.

First, let me say that I am supportive and I advocate helping children (all children) with special needs but most especially those with autism. I also believe that the people who initiated this bill and you, yourself had the best intentions when it was brought forward. But from what I can gather, this bill does not get down to what is really needed to help our children. It is not about providing children with scientifically proven methods of treatment but instead is asking that the Government dump more money into the hands of the Service providers, the Child Development Centers, for more things like SLP, OT, Physiotherapy and my personal favorite 'Theraplay' (the Okanagan's answer to autism treatment).

The majority of these professionals do nothing to help our autistic children. In fact, here in the Okanagan there is NO support for Lovaas-type Applied Behavior Analysis from the vast majority of these so-called professionals. The sad reality is some 2 1/2 years after our son was slogged through their ineffective programs, denied information concerning Lovaas treatment and I was told the FEAT of B.C. parents were all fanatics – well, it's still happening to the kids coming after Jeremy. While it may be in towns a few hours away, with SLP's of a different name, the same bs is being spread about what a Lovaas program is and how 'Theraplay' will do just as well.

This bill will not allow for the fact, that we as parents of autistic children should have the right to demand only scientifically proven treatment for our children (which is Lovaas treatment) and which no service provider in B.C. is qualified at this time to provide.

If we sign this petition, we will be supporting those people that are directly involved in wasting our children's precious time with ineffective and USELESS (New York State Health Report) therapies.

It will also encourage parents of newly diagnosed children from seeking out and demanding Lovaas treatment for their kids as they will be told 'Oh, here let's try 'Theraplay' 'SLP' 'Sensory Integration' and preschool first.

The very sad reality to that, is that here in the Okanagan, kids still aren't being diagnosed until 3 1/2 – 4 1/2 -5 -years-old. So while their parents try and wade through the false information that is being spoon-fed them by the nice Okanagan experts – the kids are long past 'best outcome ages' when the programs mentioned have failed them.

The early childhood professionals don't really care as the kids are now the school system's problem. 'Oh, well….'

The only thing sadder is those parents who believe and are waiting for the Government to implement it's own Lovaas ABA program- another beaurocratic promise that won't see the light of day or will be so badly run that the children won't have a chance to succeed.

So I can't support this bill as it doesn't support what I believe to be what my son and all autistic children need and deserve. The right to an appropriate, scientifically proven method of treatment – Lovaas-type ABA. It supports not the kids but the professionals. It doesn't make anyone accountable for their actions or to our children.

Now, if you want me to support a legislative law like the IDEA in the United States- which states 'that a child with disabilities is entitled to -by law- a scientifically proven method of treatment/education' (not a direct quote but close) I'm there.

Barbara
Jeremy's Mom & Advocate

[Barbara Rodrigues]

Hi. I am looking for anyone who currently has their child enrolled in a independant school, either Catholic or another form of Christian school. How was their reception to your child with autism? Was your own aide able to attend the class, etc. Looking for success stories (hopefully) and hoping to say (see, they are doing it in so-and-so). Please email me privately or to the list.

email – joe_rodrigues@bc.sympatico.ca

Thanks a lot.

Barbara Rodrigues

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