This topic contains 3,401 replies, has 353 voices, and was last updated by  Julee Bisiker 1 week, 5 days ago.

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  • #67

    FEAT BC Admin
    Keymaster

    This area is for discussions in general topics.

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  • #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.

    #5774

    Irene Cheung
    Member

    Attn: Parents and Seniors Therapists

    Re: "Socialization and Generalization" Workshop

    conducted by Lisa Wincz, ABCs, New Jersey

    @ Simon Fraser University, June 9/00, 9am – 4pm

    Maggie Benston Student Services Centre, Rm 2292 & 2294

    Just a reminder to all senior therapists and parents who take on the role of senior therapist for their child's team, pls be reminded of the above workshop to take place this Friday, June 9th. Pls call Irene Cheung @ 439-3073 to reserve a seat. We only have 11 seats left!

    For those who have already reserved 1 or more seats, pls contact me if your numbers have changed so that we can make them available to others.

    Thank you all for your interest!

    Irene.

    #5773

    Our son Christian was in the "secretin study" at sunnyhill. Since he received the placebo we are being offered a vial of the drug at a cost. we need to find a physician willing to administer it.

    Has anyone had a physician administer the drug for them since the conclusion of the trail?

    #5772

    Peggy Boon
    Member

    I would like to ask your help in getting the word out about this weekend's rally in support of the CHILD SERVICES EQUALITY ACT which calls for the end of waitlists for the health and social programs and services that so many BC children desperately need.

    THE RALLY IS THIS COMING SATURDAY (27th)AT THE ART GALLERY AT THE CORNER OF HORNBY AT GEORGIA AT 2 PM

    Wear red shirts/clothing to show your support and come along. Families, friends, and professionals are all welcome.

    For further information or if you would like to become involved and download a petition to circulate, visit the website at:

    http://www.waitlist.bc.ca

    Hope to see lots of FEAT families there.

    #5771

    David Chan
    Member

    Hi everyone,
    Michelle Weis has quite a few new therapist names on her list. Contact her at 882-9196. The Therapist are spread out through most of the centers in greater Vancouver. Give her a call if you need more, or are looking for therapist

    Dave

    #5770

    David Chan
    Member

    Hi everyone,

    Michelle Weis just let me know that she has some
    new names on the Therapist list. If you would
    like a copy, contact her @ 882-91

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