[FEAT BC Admin]

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[Graham Egli]

RE: Anon – Fri Jul 19th

To help you I offer the following comments:

I preface these by saying I am not a therapist or specialist or scientist only a parent of a child with autism.

1) Who helps best ? My experience has been that the Autistic Society was a bit helpful, FEAT very helpful, government (the previous one) totally useless. For example the previous gov't sent a speech therapist out once a month. This person never once conducted any speech therapy with my son during the visits, she merely chatted and conducted the odd assesment test. I also had a few meetings with my son's gov't set up "team". These consisted of several gov't people along with gov't hired consultant types who probably had good intentions but where pretty much totally ineffective and never productive. My advice use gov't if you have to, accept whatever aid they offer your child, be nice to them (they are basically good people) but do not really expect anything very exciting from them.

2) Funding. The current gov't is to be commended for the granted funding to age 7, a big step forward. Recognizing that the province is financially broke, I can understand the age 7 cut-off. They are trying to help as much as they can afford in areas they will get the best results. My understanding is that up to age 7 ABA gets better results than over age 7. Though ABA continues to help older children, and I am sure the gov't will eventually increase the funding for over 7 once they find the funds or the court orders it earlier than that. Also FEAT is to be congratulated for the efforts that resulted in the up to 7 funding. The best part is that you can spend the monies as your program requires and not only on gov't services. I am always upset to hear a child can not be treated because of funds and we must continue to work to ensure all children get funding.

3) Start your own program…while a true ABA program requires trained therapists, data collection etc. I beleive you can help your child in many other ways (though they will not be as effective as a real ABA program). These ways include simple conversation. Talk to your child constantly about anything, they do hear you and eventually you may be surprised at what they start talking back to you. Just talk to them as you go about your day, tell them what you are doing, watching, waiting for, where you are going, what time things will happen etc. Read to them daily, sit with them, hold them as you read. Point out things as you walk or drive by. Do the same looking out your windows at home or in your yard. Ask them what they see. Play with your child. It really helps. Direct them to appropriate play behaviour (cars driving, balls throwing or rolling etc.) Have them help in daily tasks, mixing food, washing or dusting. Show them how the TV remote works ( a harmless appliance that gives them a sense of some control over their environment) Use toy phones, pretend phone calls. Look at catalogues together, point to pictures say what they are in simple terms, eventually ask what the child thinks they are (boy, girl, cat, dog, etc.) Teach them to count on their fingers. Treat them to Mickey D's and have them choose from Hamburger or Chicken Nuggets etc. White milk or chocolate and so on. None of this makes a real ABA program, however all of these things will help your child a bit anyway.

Hope this helps.

Thor's Dad

[Deleted User]

Good Day,

Well I have taken a break this morning to take time to read the many new postings on the FEAT chat board. Since the posting of the "Friends of the Autism Society" letter there has been a lot of debate and honestly, I only skimmed through most of the postings.

As a new member of the ASBC Board of Directors, I am shocked and dismayed at the contents of the letter. Essentially, it is misinforming propoganda with little basis in fact. The current Board of Directors at the ASBC has been democratically elected in a fair process which was carried out according to the constitution of the society. Michelle (my wife) has posted previously about our motivations and intentions when I decided to run for the Board of Directors. Those are the facts. To those of you who may have decided to sign the petition, I am sorry to say that you have been duped.

To my mind, the letter constitutes discrimination on the basis of association. I believe this type of discrimination in not for profit organizations is specifically mentioned as a big no-no in the BC Human Rights Code. The Board of Directors has made no statements regarding a change in direction at the ASBC and to my knowledge (and I think I would know), nothing has been planned. Therefore, the only basis that I can see for the letter is that some of the new Board members have attended a FEAT meeting or two or have posted on the FEAT chat board. Since I am one of the individuals being discriminated against, I am very offended.

I cannot stand discrimination of any kind and as a member of the ASBC Board of Directors, I plan to make my views very clear on that issue. I speak against discrimination on the basis of treatment choices, on the basis of age, association, race, language ability, or any factor which will prevent us from doing the best that we can for our children and for adults living with autism. Most of all, I stand against discrimination on the basis of disability. Children, parents, and adults living with autism have faced discrimination for too long.

This letter and petition have only strengthened my resolve to stand up for my rights and the rights others.

To anonymous (several posts ago), I find it very hard to imagine that FEAT, as an organization, is capable of suppressing information about treatment options. While there may be parents who are associated with FEAT who may take this perspective, and they may be vocal and post on the chat board frequently (as is their right), they do not control the ASBC (as insinuated by the "Friends of ASBC" letter). While the ASBC Board of Directors may include several FEAT associated parents we are all individuals, we have our own opinions and I am looking forward to hearing what those perspectives are.

In the end, democracy will rule the day. I would encourage all interested individuals to take out a membership in the ASBC and participate. Let your voice and your vote provide direction. For those of you who choose to follow this path, I will say the following……..united we stand, divided we fall. The discrimination against people living with autism has been assisted by our division. Those behind this petition seem intent on continuing that division.

All the best to you and your families,

Justin Himmelright

[Deleted User]

I feel that FEAT parents feel strongly about ABA because their own children are living proof that it works. They are parents, who, like me, have a choice where to have their child's treatment. Many in FEAT – I am sure tried the government route with no success, such as non ABA treatments. I haven't gone that route because I have spoken to FEAT parents and I am so greatful in getting their honest opinions as a new parent to autism. These parents know the road many new parents face, and thank God for them and the big win in the legal battle that has opened up doors so we don't have to face quite what they faced.

I shutter to think if they didn't fight for our autism kids in the court of law how much parental control we all wouldn't have gained. We are the parents: we have the right to have our child educated where we want, we have the right to refuse treatment if we want, and we have the rights to decide what's best for our children. Feat just enforces this. I am greatful FEAT exists. The autism society has done nothing for me, sorry to say. It would be better if they had more support for families, offered a school where child specifically with autism can attend (such as a normal school list that has trained ABA trained SEA'S and teachers – so children with this handicap aren't kicked out of it or instead of saying I don't know of any school, or most children have a bad experience) offered some funding for treatment, also there are parents working at that society whose own children are in ABA or will be.

I am one of the parents who doesn't qualify for IEII. (Like many parents whose child is over 7, or doesn't have a Sunny Hill diagnosis, etc..) There should be no age restriction for children recieving treatment, there should be no restrictions in where children get diagnosed or by whom. Many of these so called professionals like to give themselves jobs, but have not the best interest of our children. We do, no one loves them more than us. That's the point.

**In closing, my child has not recieved ABA treatment at all. Being very honest, I wish that the professionals in this ABA field would be more willing to charge hourly rates, but that is a discussion that need not be discussed over and over. (I have tried for almost a year now to get support from this route and to no avail.) I shall keep trying as I believe ABA is the BEST for a child with autism.
I do have one question, does anyone have any suggestions for ABA for parents to begin at home? Such as any treatment suggestions, etc.. Rachel Russell mentioned in her post about documenting behaviours. (I would appericate any suggestions) -I would be very open to suggestions.
My child is entering the first grade so any ideas are appericated!
**

Thank you all for your beliefs and keep it up. I know that your not extreme people, your parents who have found a successful treatment and know the truth. Many other ways have proven unsuccessful. It's pretty sad that the children with cerebal palsy (I am happy for them)get treated with much support, and yet children with autism don't get the same considerations.!

[Deleted User]

Good post

anonymous #2

[Deleted User]

I wanted to make this post in response to Michelle’s post describing her beliefs about the intentions of the new ASBC Board. First off, thank you Michelle. Your statements (in my opinion) really help to clear the air around the future of the ASBC. I am however left with questions. I too WAS concerned about the impact of so many FEAT members on the board of the ASBC. I believe that this concern in myself as well as others stemmed from the “radical” (no offence intended) perception of FEAT members. I am 100% for parents receiving as much information as there is on ABA, and FEAT is right in saying that ALL children should be entitled to ABA. I do believe Michelle when she says that her husband’s intentions are not to force ABA onto everyone. I do wonder though, whether ASBC will continue to provide information on ALL other possible avenues for the kids. I hate to say that I doubt it, but I am still concerned about that. In my opinion, the most important thing is the kids, and as a result, I try not to pick sides. FEAT members, however, have spent a great deal of time discrediting everything that is not ABA. I myself have been told by FEAT members (and it has been posted on here several times) that if you do ANYTHING except ABA, you are harming the child. I have even heard this go as far as to be called abuse!!!! I would really like to know, how (even with the best of intentions) people who believe so strongly that there is only ONE answer to Autism, intend to continue to freely pass out information about “garbage” approaches or “therapies of the week”, which they view as harming a child. I just can’t see that as happening.

My intention of this post is not to bash or insult anyone, especially FEAT. I hole heartedly support FEAT and their cause, but I am still concerned that FEAT will suppress anything that is not ABA. I do not blame FEAT, that is it’s nature, and on this chat board, well that is the purpose (to promote ABA I mean). In the rest of the world, ideas should not be suppressed. People should be given ALL of the information (including ABA), and left to choose for them selves. If ideas, information and knowledge are suppressed, any hope we have of advancing will be suppressed as well. If Dr. Lovaas had been suppressed by an advocacy group as influential as FEAT, ABA may not exist today. For all we know, one of those “Therapies of the week” may be the best treatment for Autism. Maybe after some restructuring, one of those therapies may appear to be superior to ABA. Maybe not, and probably not, but who knows unless you give it a chance.

[Deleted User]

Avery, Michelle, et al.

Thank You. Those were the answers I was hoping for. I just hope other ASBC members get a chance to hear your stories.

ASBC members probably figure that FEAT members are all wild-eyed radicals hell-bent on their own agenda. I'm sure many ASBC members are scared that such a major change will destabilize the organization, reducing the pitiful services even futher.

Yet you've made it clear that your family's "agenda" is to help your own child, and to help other parents as best you can. Fairly, respectfully, passionately.

ASBC is in good hands.

Best of Luck

Anonymous on Wednesday, July 17, 2002 – 08:45 am: (who is a parent, dedicated to ABA for six year now).

[Deleted User]

There have been some excellent responses to the recent debate but I do feel the need to add my comments.

First of all, I realize there are a lot of us who are angry from battling the government, from battling with other parents and exhausted from the daily struggles of having a child with autism (let me assure you I have and often continue to find myself in this position) but could we please refrain from name calling, sarcasm and insulting one another's therapy choices? This chat board is mainly made up of pro ABA people – that is its purpose – if you are not pro ABA you are welcome to post comments or questions or even question the validity of studies etc because we can quite happily provide data to back up our arguments but please don't insult our choice. Keep negativity to yourself. And on that note, those of us ABA parents have every right to defend our choices but we should refrain from insulting the choices of others, its unprofessional and unbecoming. And I realize that is hard because we are a passionate bunch but…let me put it this way, you won't win anyone over to your argument with insults.

Okay, enough said on that, please don't flame me!!! ;-)

My husband is a newly elected member of the board of ASBC. Because he is extremely overworked at the moment, I thought I might answer some of the anonymous' post regarding the intentions of new members and will they represent the non ABA children etc. I will start by apologizing that I can not answer every point, too much there for one response. I also do not speak for FEAT of BC or for any of the board members, but I do know the intentions of my spouse.

here is our story, the background is essential as to why my husband is on the board. bear with me, it does get to my point.

When my daughter was in the process of diagnosis over 2 years ago. We turned to our local ASBC group for support. We also contacted the Austism society and received their parent package. AS I began to research autism I began to hear about ABA. I searched through my parent package and found VERY little about ABA. Nothing that would help me get started or even find someone to help me get started. I also asked at my local ASBC group. I was met with blank stares, no one, not even the facilitator said anything. One woman volunteered an article that argued that Lovaas ABA was not as effective as the scientific studies believed. I later learned that the facilitator and at least one other parent there that night had ABA programs for their children. When I asked this facilitator about the success or lack thereof of her child's aba program, I was first told it was useless and that I should go with CBI services. Minutes later she admitted that her ABA program had taught her child eveyrthing he knew and that he had made significant gains.

Feeling a bit confused about ABA and wondering if it wasn't all that it was cracked up to be, I read my ASBC newsletter and happened to stumble across the FEAT of BC phone number, called and Jean Lewis answered every question I had with facts. At that moment I walked away from ASBC.

I continued at my local support group for a few months but found that the hostility of the non ABA parents was too much to take, despite the fact that I was always respectful of their differences and how my decision to choose ABA might be upsetting to them. The last meeting I attended, a new parent was there. She was looking for information on what to do with her autistic child. no one even suggested she look at ABA. THey told her to get a social worker that she would be waitlisted and proceeded to moan about how horrible life was with an autistic child. I was the only one who breathed a word about ABA, and due to the hostility in the room, I am embarrassed to say, I whispered her information about FEAT of BC on the break.

AT least she got the info and today is very active in helping others get started. But months later when she tried to inform the parents of the support group about an EAP event, she was made to feel extremely unwelcome and when she left several of those parents cheered, including the once ASBC facillitator.

My husband and I have since spoken to many parents with children wiht autism. We have helped many parents in our community to learn of the transtion money, parents whose child was eligible but who had not been told of the program. We helped parents start ABA programs, find therapists and we listened when non aba parents talked about their hardships. It breaks my heart to see children not getting treatment, not improving. even worse is when I meet a parent where no one told them about ABA, parents who had they known may have chosen to do ABA. We have heard so many stories of the ASBC not providing adequate information to paretns.

The ASBC has withheld information from parents more times than we can count. Perhaps their intentions were good (although I cynically wonder how they could be), perhaps they were not. I have been told and from what I have seen, my opinion is that they do not tell parents about ABA unless you directly ask for fear of setting your hopes too high on something you can not afford. That is crap! No one has the right to decide whther you get information based on whether THEY think youc an afford it.

I do agree that the ASBC must be able to provide parents with the options and information on practices other than ABA but the ASBC should also stand behind parenst doing ABA and tell new parents about this option. ABA is scientifically proven to be effective. Their have been replications of the Lovaas study, wisconsin has preliminary results that are very similar to Lovaas and include some promising findings for home programs. ABA has been proven in the courts to be medically necessary. ASBC must provide this information to parents who want to know. And a parent should not have to be in the know and ask, new parents should be given information about ABA and then allowed to take or leave it.

We did not join the ASBC in the past because we didnt' feel it was money well spent. Over the last 6 months as our lives have become smoother, my husband and I began to talk about the need for changes in the system. We have been so blessed, our children our doing amazingly well. And while we have helped others, we felt we needed to do more. When the opportunity to run for the board of directors arose, I urged my husband to go for it.

His intention is not part of some conspiracy. He does not have a secret agenda to promote. He does not plan to force parents to do ABA. But I will mention that when we joined the asbc a few months ago, we received the same parent package we received year ago. It still lackied sufficient info on ABA. THat package confirmed to us that soemthing needed to change. The ASBC must represent all parents of children with autism, all children with autism and all adults with autism. It was NOT doing that.

There were many children who are now adults, teens or older children who did not get these opportunities, and who suffer as a result. The asbc must represent them but it must also ensure that children wiht a medical condition receive medical treatment. Parents must be given the access to this information. WE can not continue to allow so many people with autism to not recieve treatment.

And no, FEAT of BC won't be organizing book burnings. We are all for freedom of information, we have the data and the facts to back our arguments up. We don't need to burn the opposing arguments. We are happy to stand up to them.

And no we won't be laundering money, taking money or using ASBC to get government money. We quite like our independence from corruption. If we had wanted governemnt money, we could have taken it before, but it would have forced us to sacrifice all we believe in. No thanks.

And no, FEAT of BC parents who participated in the previous lawsuit will not be getting money form ASBC to pay them off. THat is a ridiculous statement and rather offensive and I am not even a participant of that lawsuit. Those parents sacrificed themselves financially and emotionally to fight for something they believe in.

Members of FEAT will argue against anyone who prevents families from accessing ABA, but those who choose not to practice ABA have every right to do so. All we want is for the information to be there – informed choice not lack of choice.

Please remember that there are lots of non FEAT people on that board. Will they represent all of the new parents of children with autism who want ABA services? Did they ever represent us before? THey did not represent my two children with autism.

And finally regaring the children who do not recover comment: ABA is not a guarantee of recovery. The children who did not recover during the Lovaas study continued to receive one on one treatment. THose children made and continued to make significant gains. THey didn't lose their diagnosis but many of them lead productive lives. THeir quality of life is in all likelihood significantly improved from what it would have been. I am fortunate that my consultant worked with those children and was able to tell me about these successes.

I hope this answers some of those questions. Those new board of directors who came from FEAT of BC are individuals. FEAT is not some political party where there is a whip who forces others to tow the party line. Those new directors are parents of children with autism who happen to believe strongly in ABA and who happen to feel the ASBC was serving a small minority of parents. In its previous state it did not served the 80% or however many were not practicing ABA, it served a much smaller number than that. And sadly it seemed to work very hard to serve the government and those who have their hand in the pockets of the government. The parents of children with autism deserve more.

Michelle
mother to Breanna and Griffen, two diagnosis, two program, two very real success stories

[Mike & Jean]

Alexandria,

I too am a member of ASBC and a subscriber to the FEAT of BC 'CHAT'. I would suggest you review the response from Avery Raskin of July 17, 2002 – 11:46 am reagding the post from 'anonymous' I think Avery has done an admirable job of responding to the questions raised (as silly as some of them seem to me to be)

I would add one issue however that all members of ASBC need to come to terms with. It is highly unlikely that the current level of government funding will continue past the current contractual arrangement we have. If you review the financial report of the Society you will see that salaries and rent basiclly eat the entire amount up so you don't need to be a CA to understand that things will have to change if the funding level cannot be maintained by new sources of revenue.

Change however can be a good thing, it allows us to do more with less, work smarter, and employ new technologies to do those things that were identifed and accepted as part of the Society's Strategic Plan (developed last Fall).

Like Avery I will not presume to speak for others on the Board but I align to our constitution and the goals of our Strategic Plan. If that makes me one of "the more extreme elements of FEAT" as described in the 'requisition' recently circulated so be it. I stood for election to the Board two AGM's ago to represent all with autism and to bring to the Society what skills I have to help in that quest. I accepted the post of President at the last AGM to continue and hopefully accelerate that quest by implementing our Strategic Plan. The rest of this in my opinion is small-minded politics and unworthy of the time it takes from the issues at hand.

Regards,
Michael Lewis (President and member of the Board of the ASBC)

[Linda Cucek]

Kim Peek, is the original "Rainman", who Dustin Hoffman played the character as, he was a genius in math and memorization.

My funds are coming slow, but there has been many people show interest in my cause to get the "Peeks" here. If anyone wishes to help me in support or fundraising my email is lindacucek@shaw.ca

Kim and Fran have interacted with over 1,085,000 people in groups across America since the fall of 1989. They have been on international television. More than 1800 newspaper articles have featured Kim, his unique knowledge abilities, and message to humankind. They want to meet with parents and families of persons with disabilities, including hundreds of frustrated families with incomplete recognition and assistance for autistic individuals young and old, they are helping to build programs for these individualized challenged individuals and their families and in their home environment. Whether a child or an adult, there are present, tested programs designed and offered by social service specialists that can fulfill these special needs. Lobbying for such programs is one of the main focuses we intend to accomplish in BC.

Good things never would have had a chance to be part of "Peeks" lives and thousands of other lives if we had felt institutionalization was the best for Kim, and his family. Institutionalizing-warehousing such individuals-putting them into an environment of medications – increases the psychological damage to them as human beings. We must remember that these people are not criminals and should not be removed from their families, home and community participation. Prison programs seem to receive the funds required to treat behavioral rehabilitative problems. Forty years ago the medical world in the U.S.A. was hell bent on removing most "undesirable" citizens from any opportunity to learn and share love from parents, family, and friends, Kim, is now 50 years of age, an autistic savant, like James Cucek is an autistic savant in music. Kim is honorable and respected member of society, was also evaluated by paper studies and social workers in his childhood years, and, if "Peeks" had followed their recommendations for treatment under state-control programs, he would probably not be who and what he is today. What a waste that would have been. Please support Kim and Fran Peek by helping Linda Cucek, fundraise for them to get to Vancouver BC.
Money for fundraising:
Scotia Bank of Port Moody
Funds made to "James Cucek Fund"

[David Chan]

Dear Anon,

It's pointless to churn this thing back
and forth ad nauseum. Yes we all get it –the
costs are high. So is high quality
chemotherapy. What's the point?
Oy, trust me I know what the costs are. I will
repeat my orginal point regarding costs. Until
all alternate therapies become free, I will stick
to what I know works. Even if the other
therapies WERE FREE I would still be doing
ABA, because it's effective.

As for the science part, no one is making
you buy the studies. The New York State
studies, the studies in Wisconsin. You've
already made it clear that your mind is made
up that Lovaas isn't your thing, and that's OK
by me. As parents and caretakers we make
what we feel are the best choices for our
children, and you have made yours.

This board is a pro ABA group of parents. We
have found a methodology that has been
successful for our families, and that's that.
Why beat it to death, this study that study,
whatever.

The parents in this forum have made their
choice, and please repect that. Let's just
move on. Let's help these kids, cuz they ain't
gonna be kids forever.

Please, do not feel compelled to respond to
this post.

Thanks, and all the best. I mean that with no
sarcasm.

Dave, Mr.P's Dad

[Author]

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