This topic contains 3,406 replies, has 355 voices, and was last updated by  Kaitlyn Born 1 month ago.

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  • #67

    FEAT BC Admin
    Keymaster

    This area is for discussions in general topics.

Viewing 10 replies - 3,381 through 3,390 (of 3,406 total)
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  • #5784

    David Chan
    Member

    We are looking for volunteers to help with the
    conference at SFU in September. We need
    people to pick up free stuff form stores, and
    other refreshments from the confernce. Call
    Michelle at 882-9196 if you can help

    #5783

    David Chan
    Member

    Michelle is wondering if there are any kids that
    are doing phonics, and what kind of toys or
    gizmos are bing used in their program. We
    tried some toys but, we found that our guy was
    just stimming on the toy rather that getting any
    real benifit from the toy play itself. if you got a
    real cool toy or gizmo that seem to work.
    contact Michelle at 882-9196. or post it on the
    board and we can all try them and post the
    results.

    many thanks

    Dave

    #5782

    David Chan
    Member

    Michelle is wondering if there are any kids that
    are doing phonics, and what kind of toys or
    gizmos are bing used in their program. We
    tried some toys but, we found that our guy was
    just stimming on the toy rather that getting any
    real benifit from the toy play itself. if you got a
    real cool toy or gizmo that seem to work.
    contact Michelle at 882-9196. or post it on the
    board and we can all try them and post the
    results.

    many thanks

    Dave

    #5781

    Linda Cucek
    Member

    Hi, I have been 14 1/2 years without support for my autistic son in late 1999 the Ministry of Children and Families came aboard. At this time I still have insufficient support because I have to wait another 1 1/2 years for a behavior consultant. Everywhere I turn with my son I have to go on a waiting list, this is extremely wrong.
    There is no Planned Health Care for disability children.

    James, will be sixteen the end of this month and
    by the time the year 1/2 comes around he will be an adult. This is quite stressful and frustrating for our family. I don't feel an autistic child should have to go on a waiting list that has triple diagnosis. The bottom line is "Waiting Lists" should be done away with. Also, Gretchen Brewin, denied me my right to have the Louvaas treatment.

    Linda Cucek
    Jame's Mom & Advocate

    #5780

    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

    #5779

    Peggy Boon
    Member

    Avery,

    Thanks for your response – my preference would be to think of this as a 'discussion'. We have both shared our choices and the reasons for them, and the obvious conclusion we can both make is that we agree to disagree. I don't believe my post was intended to offend or about being on or off topic – merely informing large groups of people about something in the most timely and efficient methods available to me.

    Some choose not to support this, and again that's their choice and I respect that. However, some FEAT families have chosen to support this initiative through signing the petition, yet another has volunteered to become a canvasser…go figure.

    I am abundantly clear what 'OUR' fight is about, however thanks for your reiteration.

    In your last paragraph, you mention devoting your energy and resources, and about what your big picture is and that's great…again our pictures look different…no big deal…certainly nothing to apologize for.

    Perhaps at some time during my work on this initiative I will meet some families who have not yet heard about Lovaas and FEAT of BC and I will take the opportunity to inform their wisdom…I will help them to find a voice and a group that already exists.

    #5778

    Peggy, I normally reserve debating for usenet where it belongs, but to use the vernacular of the newsgroups, you are off topic…WAY off topic.

    > The premise….there is no right or wrong in what
    > families choose(for all – those who have a child
    > who lives with ANY disability-not just Autism)…

    Admirable sentiment. But this is FEAT, not Families Seeking to Correct All the Perceived Wrongs of Government. I won't even attempt to speak for others, but I personally do not have the energy to campaign for all the other special needs families in the province or the country. They must find their own voice and form their own group.

    > In terms of what this initiative might do for
    > children with autism whose families choose Lovaas
    > style ABA programs – very little, if anything,
    > probably nothing whatsoever…

    Exactly my point — why are you raising it here? And yes I understand that there are people who suffer under the yoke of multiple disorders for their children, and for those people, ABA may not be enough, but you seem to be forwarding the philosophy that the government should just hand money to parents to pay for any — I'm sorry — quackery they might be grasping at in faint hope. If I may be so bold, OUR fight is about the government WASTING money on quack so-called treatment, and about the government refusing to fund the only treatment regime which has been scientifically proven over decades to help our kids.

    >To me, this initiative is about the big picture.

    Devoting my energy and resources to doing whatever I can to give my daughter a full and rewarding life IS the big picture for me. I expand my picture to the best of my abilities to do what I can for other families I've come to know with kids on the team…first and especially for those who did so much for us when we first discovered something about Ariel was different. If that is not enough for you, Peggy, I'm sorry.

    Avery
    Ariel's Dad

    #5777

    Peggy Boon
    Member

    Barbara:

    First of all, I would like to thank you for your post…I was actually wondering how long it would be before someone responded to my posts regarding the Child Services Equality Act/Waitlist Initiative…I applaud you for your honesty and I respect the choice you have made. Furthermore, I honor where you've been in terms of your 'fight' and where you want to be not only for yourself but for all families in BC who choose Lovaas style ABA as the treatment of choice for their children who have autism…I too have done and continue to do the 'fight' and am frustrated by our government's ignorance and inability to acknowledge the scientifically proven methods and successes of Lovaas Style ABA as I struggle to provide my son with this type of treatment. With all due respect, tho, I do feel that I need to respond and provide some insight to all who read and participate.

    The premise….there is no right or wrong in what families choose(for all – those who have a child who lives with ANY disability-not just Autism)…choices are just different…and I strive to respect other's choices irrespective if they're different…bottom line is I see ALL children as valuable and believe they all deserve a chance to fulfill their potential.

    In terms of what this initiative might do for children with autism whose families choose Lovaas style ABA programs – very little, if anything, probably nothing whatsoever…In terms of what this initiative might do for children who live with needs such as those that may derive a great deal of benefit from SLP, OT, PT, wheelchairs, CDC's,care aides, adequate nutrition/housing, and maybe even theraplay…those who live with challenges presented by CP, Down's Syndrome, epilepsy, brain injuries, deafness, blindness, birth defects,ADHD, multiple diagnoses, etc….now there's some real possibilities….In terms of what FEAT of BC has done for the movement for autism and the Lovaas Style ABA treatment approach….significant, colossal…I thank all FEAT of BC families who have worked tirelessly to keep our collective voice strong and I eagerly read the paper every morning hoping to hear of the judge's decision…In terms of what the future may hold if this Initiative is not successful…increasing waitlists, children going without in their infant years, children going without in their preschool years, children going without in their school years, more children going into care…potentially adults who are flooding into the criminal justice system and institutions and increased dependence on the 'system'…

    To me, this initiative is about the big picture. It's about all children on waiting lists all across this province…it's about reaching out to all families who live with the challenges presented to them by their child(ren) with special needs and uniting with them to become a collective voice….If I expect my community to value, embrace and accept my son and family then I need to walk the talk…again this is my choice.

    As a wise woman once said, 'it is my hope that by sharing strategies, ideas, and collective wisdom we will be better able to fight for our children's rights (individually and collectively).' …I've chosen collectively.

    #5776

    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

    #5775

    Peggy Boon
    Member

    Dear FEAT families:

    Please mark your calendars for this Friday June 9th at 11:00 a.m. as there will be an information meeting about the Child Services equality Act (waitlist initiative). Jim and Penny will be on hand to provide insight about the initiative and how things are going thus far.

    The meeting will be held at Oakridge-Marpole Community Center (upstairs board room) at 990 West 59th Ave (at Oak St) in Vanc. at 11:00 a.m.

    Bottom line, we need to get more canvassers on board who can collect signatures in support and we need to fill some of the gaps around the province. At this meeting, there will be petition forms for all the electoral districts, canvasser packages and details of the areas that desperately need canvassers. There will also be a calendar of upcoming Children's Events that can hopefully be targetted. If you cannot attend the meeting but would like more information, or would like to sign up to become a canvasser, please visit the website at: http://www.waitlist.bc.ca

    Thanks.

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