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    FEAT BC Admin
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  • #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

    #5769

    Isaac
    Participant

    Passing on a piece from the FEAT Sacramento list…

    ***************************************************

    Diagnostic Breakthrough in Autism and Mental Retardation Reported

    [The introductory message, related questions and answers and study
    abstract is provided by David Pisani and Ellen Powell EPowell@modimes.org of
    the March of Dimes. This study was funded in part by the M.I.N.D.
    Institute. Thanks again to R. Rollens.]

    Today some exciting research findings on autism and mental retardation
    are being released by the California Birth Defects Monitoring Program
    (CBDMP) and the National Institutes of Health. Because of your interest in
    this issue, we want to share them with you right away.
    A successful pilot study conducted by Department of Health Services/
    California Birth Defects Monitoring Program (CBDMP) and the National
    Institutes of Health (NIH), with collaborators at the Department of
    Developmental Services and The M.I.N.D. Institute, provides an important
    clue for researchers looking for causes of and cures for these conditions.
    The abstract of this study is provided below. In brief, the study
    looked for biomarkers at birth in children with autism, mental retardation
    or cerebral palsy by analyzing newborn blood samples. The results are
    compelling: strikingly higher levels of four substances crucial in nervous
    system development in 95% of children with autism and mental retardation.
    Children with cerebral palsy had different biomarkers indicating prenatal
    exposure to common and treatable medical conditions may underlie many cases.
    If the findings hold, there are dramatic implications. If we can
    identify babies at risk for these conditions at birth, we may be able to
    jump start intervention. Equally important, the possibility of biomarkers
    at birth gives scientists a new and highly promising research direction in
    the search for causes.
    The next step in this research is to obtain funding so that CBDMP can
    confirm and expand upon these findings with a larger group. As this pilot
    project demonstrates, the Program is uniquely qualified to lead this effort.
    CBDMP has proven competency in data collection and state-of-the-art
    research. DHS archives newborn blood specimens and has an established
    relationship with the only laboratory in the country currently capable of
    performing this procedure. DDS Regional Centers are single points of entry
    into services– 85-90% of affected children can be found and diagnostic
    information obtained. The CBDMP's demonstrated research capability, ability
    to find cases, and access to newborn blood specimens is unique in the
    nation.
    The March of Dimes supports additional State funding for the
    California Birth Defects Monitoring Program to investigate causes of autism,
    cerebral palsy and mental retardation. Investing in this research-
    * may uncover the causes of these serious disabilities and
    contribute to improved interventions;
    * will contribute to answering critical public health questions; and
    * positions the State to receive millions in Federal research money.

    David Pisani and Ellen Powell EPowell@modimes.org
    March of Dimes
    1-888-898-2229
    * * *

    “Neuropeptides and neurotrophins in neonatal blood of children with
    autism, mental retardation, or cerebral palsy”
    Key Findings and Implications
    In the first study to find biomarkers for children with autism and
    mental retardation at birth, we found:
    Strikingly higher levels of four substances crucial in nervous system
    development in children with autism;
    The same high levels in children with mental retardation, suggesting a
    similar biologic process;
    Elevated levels of the four substances in 95% of children with autism
    and/or mental retardation;
    Children with cerebral palsy had biomarkers similar to healthy
    children.
    This successful pilot study provides new hope for parents and an
    important clue for researchers looking for causes of and cures for these
    disabilities. The implications are phenomenal:
    If we can identify babies at risk for these conditions at birth, we
    may be able to jump start intervention.
    It is important to confirm these results. However, this is a very
    promising new lead that may help solve the puzzle more quickly.
    Autism and mental retardation are among the most serious and common
    lifelong disabilities, and some reports suggest autism is on the rise.

    Questions and Answers
    What did the study find?
    A: The study found that children with autism or mental retardation,
    when compared to children without these conditions, had higher levels in the
    blood at the time of birth of four specific proteins that are crucial to
    nervous system development.
    How was the study conducted?
    A: We conducted laboratory tests on blood samples from newborn
    children who were later diagnosed with autism, mental retardation or
    cerebral palsy and children who were free of these conditions. In each
    group there were approximately 60 children. All of the children were born
    between 1983 – 1985 to mothers living in one of four San Francisco Bay area
    counties. Those years and counties were chosen for study because of
    existing data from that period and for that location on children with
    cerebral palsy and “control” children. Building on existing data enabled
    researchers to conduct this research more quickly.
    Where did the data come from?
    A: The diagnostic data on children with autism or mental retardation
    was provided by the California Department of Developmental Services (DDS)
    and the Regional Centers. Blood samples were obtained through the Newborn
    Screening Program of the DHS Genetic Disease Branch. The study was approved
    by the California Committee for Protection of Human Subjects, which has
    responsibility for assuring the confidentiality of all data.
    Aren’t these data confidential?
    A: Yes. Confidentiality of these data was maintained throughout the
    study. We have extensive procedures in place to protect the privacy of
    every child in our studies.
    Why was autism the focus of the study?
    A: Recent reports suggest that not only is autism common among
    children, but the condition may be increasing. Typically, autism, mental
    retardation and cerebral palsy cannot be reliably diagnosed until a few
    years after birth. If these conditions can be identified earlier,
    intervention that may help children with these conditions can begin sooner.
    What is autism?
    A: Autism is a severe disorder of communication and social
    interaction resulting in lifelong disability.
    Who conducted the study?
    A: The study was conducted by the California Birth Defects Monitoring
    Program (CBDMP) of the California Department of Health Services, and the
    National Institutes of Health (NIH), in collaboration with the California
    Department of Developmental Services. Funding was provided by CBDMP and
    NIH, with partial support from The M.I.N.D. (Medical Investigation of
    Neurodevelopmental Disorders) Institute at the University of California,
    Davis.
    Do the study findings mean we now have a way to positively identify
    children with autism or mental retardation at birth?
    A: No. However, based on this exciting new finding, we can target our
    research with the hope of developing a screening tool in the future. First,
    our findings must be confirmed.
    Why were these proteins selected for measurement?
    A: We selected proteins that are known to have a role in regulating
    growth and development of the brain during gestation and proteins that are
    known to contribute to long term memory, learning and responses to sensory
    stimuli. These aspects of behavior are particularly important in autism.
    We found two neuropeptides and two neurotrophins, whose levels were
    dramatically higher in children with autism or mental retardation than in
    the “control” children or children with cerebral palsy.
    Given that the diagnosis of autism is sometimes difficult, how can you
    be sure that the children in your study were correctly diagnosed? Are there
    similar concerns for cerebral palsy and mental retardation?
    A: We are very confident. We know that the diagnosis of each of
    these conditions is quite complicated so we went to great lengths to confirm
    the diagnoses on all children in the study.
    Do these findings confirm that autism and mental retardation are
    conditions that develop during gestation and are not due to environmental
    factors after birth?
    A: Our findings showed abnormal levels of certain proteins present at
    birth in children with autism or mental retardation. These findings suggest
    a potential biological indicator at birth, but they do not address the more
    complex question of WHEN these conditions occur. We know that the brain
    develops from gestation through early childhood.
    Is there any evidence that might suggest a link between autism and
    infant immunizations?
    A: Although there has been much speculation about such a link, this
    study could not address that question.
    Do these findings suggest that genes may play a role in causing autism
    or mental retardation?
    A: There is considerable evidence already to indicate that there is a
    genetic component to autism and mental retardation. This research provides
    some clues for identifying which genes may be important in the development
    of these conditions.
    Could these findings lead to prevention strategies that might be
    implemented after birth?
    A: First, these findings must be replicated in further studies. If
    our findings are correct, we’ll be able to identify children at risk for
    these conditions much earlier than currently, and practitioners can try
    various interventions to see what works.
    Parents of children with autism have suspected that diet may play a
    role in their child’s condition. Does this study provide any information on
    that issue?
    A: No. Issues involving diet were not part of the study.
    Do the results suggest a similarity between autism and mental
    retardation that we have not recognized before?
    A: Yes. For the proteins we studied, children with autism and
    children with mental retardation without autism had the same result. As
    other proteins are studied, differences may become apparent.
    Will these findings lead to a screening mechanism for all babies at
    birth?
    A: It is much too early to know. First, we must be sure that these
    findings are true. Then scientists must develop the technology to screen
    large numbers of babies—if screening is appropriate. Finally, policymakers
    must determine whether widespread screening or some other mechanism would be
    beneficial.
    Could the results also suggest that these proteins could be measured
    even before birth by drawing a sample of the unborn baby’s blood?
    A: Again, it’s much too early to know. Our results are based on one
    point in time—the newborn period. We do not know how levels of these
    proteins are different at different points in time. Future research must
    address this question.
    How confident are you of your results?
    A: As is true for all research, the scientific process depends on
    getting the same results several times. With this new and startling
    finding, we are anxious to continue this work. We have enough confidence in
    this study to launch a bigger study, once funds become available.
    How do you explain why levels of these proteins in the blood of
    children with cerebral palsy were different from the levels found in
    children with autism or mental retardation?
    A: This result is consistent with current knowledge that cerebral
    palsy represents a different kind of problem in the brain than autism or
    mental retardation. We suspect that cerebral palsy has different origins
    than autism or mental retardation. This study supports that hypothesis.
    Does this study suggest that if we could lower these high levels of
    proteins in children with autism or mental retardation that their condition
    would improve?
    A: No. The study does not answer that question. We don’t know
    whether the high levels of these proteins could cause autism and mental
    retardation, or whether the high levels are a sign of something else going
    wrong.
    What is the next step?
    A: First, in accordance with standard scientific protocol, we want to
    confirm these results by looking at blood samples from more children. Then
    we want to develop a database of children with these conditions so that we
    can look at other ways in which they are alike and different in order to
    find additional clues about causes. We also want to expand our
    communications efforts so that we can keep the public informed about this
    research as we go forward. Additional funding will be necessary to
    accomplish these goals.

    *** WHY YOU MAY WANT TO ***
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    * * *

    This abstract was presented at the annual meeting of the American Academy of
    Neurology, San Diego, May 3, 2000. The manuscript detailing these findings
    will be published in late summer.

    NEUROPEPTIDES AND NEUROTROPHINS IN NEONATAL BLOOD OF CHILDREN WITH AUTISM,
    MENTAL RETARDATION, OR CEREBRAL PALSY
    Karin B. Nelson, M.D., J.K. Grether, Ph.D., James M. Dambrosia, Ph.D., Lisa
    A. Croen, Ph.D., Ben F. Dickens, Ph.D., Robin L. Hansen, M.D., Terry M.
    Phillips, Ph.D.

    Category: Autism, Mental Retardation, and Cerebral Palsy

    Objective: To investigate whether concentrations of certain neuropeptides
    and neurotrophins in neonatal blood of children with autism, mental
    retardation (MR), or cerebral palsy (CP) differed from those in control
    children.

    Background: The etiology of these developmental disabilities is
    incompletely understood and there is no known biomarker for these disorders.

    Methods: Case status was identified from records of California state
    service agencies. Immunoassays were performed masked to outcome by
    recycling immunoaffinity chromatography on archived neonatal blood drawn for
    routine metabolic screening, measuring vasoactive intestinal peptide (VIP),
    calcitonin-related gene peptide (CGRP), brain derived neurotrophic factor
    (BDNF), neurotrophin 4 (NT4), substance P (SP), and antibodies to myelin
    basic protein (MBP), glial fibrillary acidic protein (GFAP) and neuron-axon
    filament protein (NAFP). Concentrations of analytes that best distinguished
    autism and MR from controls were chosen by recursive partitioning (CART).

    Results: Concentrations of SP and antibodies to MBP were not different in
    the 4 outcome groups. Antibodies to GFAP and NAFP were significantly lower
    in children with autism and children with MR compared to control children,
    but there was considerable overlap in the distributions. Mean
    concentrations of VIP, CGR, BDNF, or NT4 were not different in children with
    autism who did or did not also have MR, nor among children with CP who were
    or were not also mentally retarded.

    Children with concentrations of 2 or more analytes exceeding these values:
    VIP >31.5 pg/ml, CGRP >32.8, BDNF >24.9, or NT4 >48.8

    N (n) %
    Autism 64 (62) 96.9 %
    MR only 66 (61) 92.4 %
    CP 65 (6) 9.2 %
    Controls 54 (0) 0 %

    Conclusions: Most children with autism or MR had concentrations of 2 or
    more of the measured neuropeptides or neurotrophins in peripheral blood in
    the earliest days of life that exceeded the levels indicated, while few
    children with CP and no control child did. These substances did not
    distinguish children with autism from those with MR.

    ________FEAT "Night of Caring" Dinner Dance June 10_______
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    schafer@sprynet.com | Catherine Johnson PhD | >
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