[Deleted User]

Attention those attending the Intermediate Workshop at Douglas College tomorrow:

I have found a map on their website which shows where room 1620 is! Go to http://www.douglas.bc.ca/cguidenwa.html It looks like a bit of a maze so we will try to have send the early birds to a few spots to direct people. Sorry for the late notice on this, I just stumbled across this map.

Incidentally our workshop was full but we have received 2 cancellations, if you would like to attend tomorrow we will have a minimum of 2 spots and we can sometimes squeeze in one or two more people – hope to see you there!

[Deleted User]

Hi Terry,

I was blown away by your posting because the school you are speaking of is the school that my son, who is autistic, attends and we have had an amazing experience. The school was a bit hesitant at first but has become some of our greatest allies and incredibly supportive of our family and particularly of our son's program.

Just to clarify, No they do no supply the aide, you need to find your own. but they allow you to send in your own therapist – Bonus. They pay them on their payroll, not even close to equal to that of the public system and yes you have to pay the balance i.e. if they run out of funds which is almost guaranteed because our lovely government not only prevents us from proper treatment in the home they also attempt to prevent you from choosing a school environment that suits your needs by nt giving private school an appropriate level of funding.

In regards to the school, it may be possible that the reason they were unable to accomodate you is because of their limitations on how many special needs they can accomodate. It is a small school and has only one class per each grade. There are already 2 children with ABA programs in your son's grade (therefore 1.5 aides in the class).

I know from experience they are VERY restricted in what they can accomodate because they do not receive the same funding as a public school – less than half actually. The school has had to come up with guidelines on how many extra needs they can have in the classroom before they will overburden their system.

I don't know that this is the reason but am just suggesting one possible reason. I do know I discussed with one of the teachers once that their limit on "extra" needs per class.

We have had great experiences at that school but I have found that they are rather err disorganized. I would speak to them further and find out exactly why they feel this won't work. And about your money that I believe you are trying to get returned.

I definatly think you should discuss with them how you feel you were treated. They need to know that they are putting across this image/perspective and that it is not acceptable. Please feel free to email me privately if you want to talk more about this

Michelle_Karren@hotmail.com

[Deleted User]

Hi Jean,
Is registration available yet for the Gerenser/Newman workshop scheduled for March? According to your previous post information would be available the first week of January. Many of us are looking forward to the presentation and would like to register as soon as possible to avoid disappointment.
Thanks,
DeeDee

[Deleted User]

Registration was booming last week and the intermediate workshop is quickly filling up. If you plan to attend please fax in your registration immediatly to avoid disappointment. Please remember that space is very limited for this workhop because of the focus on hands on learning.

Date: January 15

Time: 9:00 – 5:00

Place: Douglas College.

Prerequisite: a minimum of 3 months experience and attendence at either a FEAT BC basic workshop of that of a Qualified Lovaas Consultant. (This is to ensure that the audience is at a similar level so that time is not spent reviewing basic information). Parents are always welcome regardless of expeience level.

Registration forms can be downloaded at:
http://www.featbc.org/downloads/ibtw.pdf

In order to register you must list your experience level as well as where you have taken your basic workshop.

Please note that the intermediate workshop fills quickly. Space is extremely limited to allow us to provide a high amount of hands on practice with individualized feedback from the workshop instructors.

thanks, see you there!

[Deleted User]

David, thanks for posting your stories. They always make me laugh.

[Deleted User]

Happy New year everyone! Registration is once again picking up for FEAT of BC's upcoming intermediate workshop. Please remember that we do not offer this workshop as regularly as our basic workshop so if you would like to attend, please do try to attend this offering. It will not be offerred again until May at the earliest, possibly not until next fall.

Registration goes quickly for this workshop and space is very limited.

Date: January 15

Time: 9:00 – 5:00

Place: Douglas College.

Prerequisite: a minimum of 3 months experience and attendence at either a FEAT BC basic workshop of that of a Qualified Lovaas Consultant. (This is to ensure that the audience is at a similar level so that time is not spent reviewing basic information). Parents are always welcome regardless of expeience level.

Registration forms can be downloaded at:
http://www.featbc.org/downloads/ibtw.pdf

In order to register you must list your experience level as well as where you have taken your basic workshop.

Please note that the intermediate workshop fills quickly. Space is extremely limited to allow us to provide a high amount of hands on practice with individualized feedback from the workshop instructors.

thanks, see you there!

[Deleted User]

Hey Tony —

I completely sympathize with your situation, as we were “there” .. until I decided to stop being “nice” and apply the ABA that I had learned to help my son on my circle of family and friends. Guidelines were pretty clear, especially for houseguests and family in the early years: therapy time is absolutely SACRED, absolutely nothing competes or interrupts it. Those that got in the way were asked to leave in an open, matter of fact way, with out exception. We ended up putting one prima donna on a early flight home at our expense do to a non-compliance issue, and a set of grandparents were moved to a B&B in another instance. Now, we are **absolutely clear** prior to any visit about what our schedule is (activities, therapy time, consults, etc.) so that folks know that they are welcome so long as they can be independent (rent a car and drive yourself around) and supportive (respecting therapy time means that the playroom is closed at this time and the rest of the house is doing “quiet activities”, or out).

For a while we were left completely alone, which wasn’t really that bad as we were deep into figuring things out, making program materials, etc.

For Xmas and birthdays we requested therapy materials, rather than “stim” toys, and openly returned anything that wasn’t on the list and bought the needed supplies. Many were insulted at first, but they came around as we made progress and sent short video footage of W. using their materials in session as a thank you. “Thank You Nana and Paco for the great “Sequencing” card pack … I have now learned how to tell and retell a short story. Next time you call I can tell you a story. I love you W.”

We also sent copies of Work in Progress and the resource materials page from Behavioural Intervention for Young Children with Autism so that relatives could make good choices and know/anticipate what kinds of materials we were looking for. They also started to become familiar with programming (ie we could say “we’re starting an occupations program” and picture cards, educational videos, dress ups, etc would start arriving.) which was really great!

This past Xmas we got a geoSafari globe to start working on geography and tons of older board games (like Blokus, Cranium, Spill & Spell, and Malarky). Any video games we received were all sports related (absolutely NO immersive environments) and provide great video modeling for sports in a normal setting (hockey, NBA, NFL) and something cool to **play with their friends**. And we also got some contributions towards the therapy program.

Again, ANYONE who does not support your dream for your child and you & the hard work that you need to do to get him there needs to be “put on hold”. This is the only way that you will arrive at your best possible outcome. Your responsibility and priority is to the child who needs your help, not to the adults who can’t understand.

Rebuilding some of those relationships may take years, even decades, to repair but they are part of the road traveled. When I look at my son laughing, playing with friends and complaining that he isn’t doing enough play dates, sleepovers or playing enough hockey … It’s been completely worth it.

Somehow I don’t think anyone, injured family or friends included, will ever say “You should never have done Lovaas-ABA, … he was perfectly fine in the corner, off alone in his own world, incapable of speech, social interaction or connecting with others. Tantrums and freakouts are normal and he would have eventually grown out of it, maybe. He was absolutely OK a shell of a person… you should have left him where he was.”. No, now they are organizing film screenings and fundraising projects in Winnipeg, and signing petitions in Montreal, Aurora, Oakville and Flin Flon.

I think in the end all will be forgiven.

So, draw your line, pick your focus and get going … you have some hard work ahead of you and your son needs you to get busy NOW!

Tons of warm wishes to carry you and your family through 2005,

Tamara

[Deleted User]

This is in response to Tony… first of all, what a burden! My heart goes out to you, not only are you struggling with setting up a program and accepting this drastic change in your life, but you are also struggling against many difficult forces.

While I have not faced anything as difficult as you are facing, I have faced a relative who is not always supportive and who feels it is her place to make "comments" on how we do things and our children's lives and who also sometimes works against our programs.

We found that after over a year and half of comments and barbs and attempts to undo our hard work that we could not change this person. We attempted to train and inform but to no avail. Ultimately we found that this person was undoing the hard work our team had done. We realized that they would not change their perspective, that their assumptions and their choices to go against our wishes were based on their thoughts that they knew better than us. This sabotage was even secretive in that we were told one thing but actions displayed otherwise. (I used to show up "early" to pick up my kids or drop by unannounced only to learn that my child's extremely expensive programming was being undone).

My husband and I sat down and came up with our plan for our kids and our "policies" on what we felt must happen. We then seperated ourselves from this person to a degree. This was hard to do but we just became very "busy". Changes of season and schedule can sometimes allow for what appears to be a normal reason for a transition like this.

What we did not do and I wish we had was to state this is what we are going to do, we would love your support but we will go ahead regardless. That day may still come… we've taken a bit of an easy approach of less time with the person. We have also stood up to our views in many occasions to the extent that this person has stopped making as many passive aggressive "comments".

In my experience, you need to seperate enough to be able to put your child's plans first… as hard as that is.

Issues of Secrecy:
Many parents, including myself attempt to operate
in the veil of secrecy but I think it is often easier to be open about your situation. Looking back, if I could do it all again I would be more open from the beginning.

I have two veins of thought for you, the first is why secrecy is not always the best option and the second is some ideas on how to explain therapists etc when operating under secrecy:

I have tried both ways and have found that being open is easier. While we sometimes think that we are keeping it secret, often our child's behavior leads those around us to conclude there is "something" not quite right. In my experience this is more damaging to my child's social life. When I've been open and discussed my child's life, I have found that many parents have been very supportive. The more parents of my child's peers have learned about therapy and about how great my child is doing, the more they have rallied around us. At our first church, we were not open about our diagnosis, as a result, no one there supported us or understood what was going on in our lives. When we changed churches, I made a split second decision to just say it… what a weight off my shoulders. I had said it – my child has autism. The support of our church has been incredible. We are welcomed at sunday school, because we took the time to explain our child's needs and to introduce our sunday school teacher to our therapists and explain why it is essential that they come (btw, when doing this it really helps to explain how one's child's needs might overburden the teacher, making the therapists attendance beneficial to the teacher). When our family was profiled in a CBC documentary and when the SCC decision came down the next day, our church was amazing. The members of our church are praying for us and for all of the families on this board who are working for the rights of our children. This type of support was so welcomed and appreciated by us in such a dark time. I've also found that so much of my spirtuality relates to my life circumstances and when not able to talk about those I am not able to talk about my spirtual struggles or my needs. At my son's school, being open has meant parents who have rallied around my son and encouraged their children to include him. The more we've opened up, the more our son's global village has supported him.

Tips on secrecy:
-therapists can be explained as babysitter/nannies/friends of the family/aunties. This is not to say that they are ANY of these things! If you are going to use these types of labels, discuss why with your team and let them know that it is a label only, not that you think they are these things.

-I am often shocked at how nosey people are so be prepared to answer questions as to why you have a nanny, or why that person might be accompanying them to an activity if you are there.

-one of the easiest catch all phrases is to say that your child has a slight language delay and that you have a student/nanny/whatever you want to call them who is working on language through play. For some reason people are very accepting of this description and often jump in with comments such as "I have several friends whose children are language delayed" etc. This type of comment works well at preschool age, because there are usually several kids in a preschool class who are seeing an SLP. It doesn't fly as well with an older child.

-for playdates, you can tell parents ahead of time that there will be a therapist there by saying, our son is struggling with language and our speech path thought that some play dates with peers would be really great so we've hired an energetic student who loves to play and is a TONNE of fun to come over a few times a week and she/he will be here when your child comes to play. It often helps for the other parents to meet your wonderful student and sometimes to even stay for coffee so that they feel comfortable.

But ultimately, the more you explain who your child really is, the easier it will be for you. Keeping the secrets is a lot of work and I often felt very dishonest.

When people learn about our kids, their programs and how effective they are as well as the struggles we face, they are often supportive. If we want to build a base of Canadians who will help us in our fight towards we equality, we have to introduce them to our children.

Hope that helps!

[Deleted User]

The meeting with Mark Warawa is also covered in the Langley Advance on page 6.
Natasha
Zoe's mom

[Deleted User]

A little bird sent this to me…

ahhh, the stench in the air thickens.

For immediate release: December 21, 2004

FEAT-BC’s December 20th press release attacking the integrity of ACT – Autism Community Training is permeated by a conspiracy theory that cannot be supported by the facts. FEAT has done important work in bringing to the attention of the public the right of children with autism to intensive early intervention but it is a cause of concern that Sabrina Freeman, FEAT’s Executive Director, finds it so difficult to turn a new page and move on from the defeat in the Supreme Court of Canada. Now it is time for FEAT to turn a new page and make an effort to work with other parent-based organizations to push for strong federal legislation to protect the interests of all children with disabilities.

While it is disappointing for the Autism Society of British Columbia (ASBC) to have lost government funding to ACT, the current board has long expressed discomfort at receiving government funding. Now is the opportunity to reform itself by recruiting a board that truly reflects the diversity of perspectives from around the province and employing an Executive Director who does not also hold a position on the board, in the interests of transparency and good governance.

To provide the facts about the ASBC’s failure to win the contract to provide information and training to parents, ACT offers the following corrections:
• The contract went out to public tender last summer in the same process used in all government contracts.
• ACT- Autism Community Training was in negotiation with the Ministry for Children and Family Development from early October. Our proposal was comprehensive, well-written and demonstrated the wide-ranging knowledge of the two principals Clair Schuman and Deborah Pugh. It was supported in writing by leading parent advocates from across BC.
• MCFD couriered the final version of the contract the day before the Supreme Court decision and Clair Schuman’s, ACT’s Executive Director signed it the day of the decision. Anyone with any knowledge of how slow government works in Victoria cannot seriously believe that MCFD was able to generate a contract and have it signed the day of the SCC decision.
• The allegation that the Ministry financially rewarded people who “supported the government’s failed attempt to defeat families in the B. C. Supreme Court” is false. In fact, no one on ACT’s volunteer Board or Advisory Council receives any financial benefit at all from the contract, and no one employed by ACT supported the government’s appeal of the Auton case in any way. The staff of ACT and several of the ACT Board are parents of children with autism. It is patently absurd to suggest that they are out to “defeat families”. Further evidence of this is in ASBC’s own archives. In October 2000, Deborah Pugh, who was then the Executive Director of ASBC wrote in the Autism BC newsletter: “The judgement of Madame Justice Allan of the Supreme Court of British Columbia in late July, the Auton decision, is undoubtedly the most positive development in the history of autism in this province.” Moreover, Clair Schuman, ACT’s Executive Director, was a parent representative on a committee of the Canadian Association for Community Living who was intervenors at the Supreme Court of Canada in support of the families not the government.

In the interests of setting the record straight about ASBC sudden interest in upholding the right of parents to more information about those on the qualified service providers list that it has run for 2.5 years, it is only proper to address the claim that MCFD’s Assistant Deputy Minister “forcefully directed service providers to not disclose [to ASBC] any information about their credentials”:

continued
• The ADM informed service providers in writing that they were not obliged by the Ministry to provide information to ASBC, as a letter and questionnaire from ASBC had falsely implied. In particular, they were not required to answer questions that were not related to their qualifications as autism consultants, such as questions about their income. They are completely free to respond to the questionnaire if they so wish. ASBC has been asked to post their letter to service providers on their website, and the government’s response, so that observers can judge for themselves, but that has not happened.
• Long before ASBC issued it questionnaire, ACT had developed a Service Provider Profile, as part of our proposal, in response to the complaints from parents from around the province that so little information was available on the ASBC website, beyond a list of names and addresses – many of them seriously inaccurate or outdated. MCFD readily accepted ACT’s proposal to collect and publish more detailed information than ASBC had ever provided about the education, training, and experience of service providers. It is obvious that this information is desperately needed by families, what is not clear is why it had not already been done by ASBC.
• Soon ACT will be sending out this profile to service providers to give them the opportunity to better describe their credentials, specialties, services and fees. Meanwhile ACT is working to revise the contact information on the list that ASBC has had for over two years – roughly 90 percent of the entries have required updating. We are concerned that in the files provided to us by ASBC supporting documentation to verify credentials for many of the Service Providers on the list is lacking. Extremely serious is that ASBC did not follow-up with those service providers who have not provided a criminal record check, in the interests of protecting our children. Receiving those checks is a priority for ACT.

It would appear from the information above that ASBC’s interest in running the “Qualified Service Providers List” has lacked a commitment to provide a strong service to families within the context of their contract with government. This may be because many in leading positions in FEAT and ASBC felt able to assess qualifications independently of this list but there are many families who complain that they feel lost once their child has received a diagnosis and that the information available for ASBC is not sufficiently helpful.

ACT is committed to supporting all parents to learn how to assess the qualifications of service providers by making this information easily assessable so that parents can be assured that minimum standards have been documented and that criminal record checks have been received. With our strong board and staff and with the support of our outstanding advisory council, ACT will be able to make great progress in the months ahead. In the past 19 months, ACT has provided over 15,000 hours of training to parents and professionals on a wide-range of autism related issues. We are absolutely committed to raising the standard of professional development in this province and we believe we can do this as an independent not-for-profit society open to diverse opinions and grounded in the research that is transforming the lives of children with autism.

While ACT understands that both ASBC and FEAT have experienced a stunning blow from the Supreme Court decision we call on ASBC and FEAT to re-assess their current focus on alleging conspiracies on the part of service providers and government bureaucrats. With a provincial election looming, it is a necessity for parent-based organizations to work together to push for government commitment to continue funding and to increase it so that it truly covers the real costs of providing effective therapy for our children.

Media who wish to contact ACT – Autism Community Training’s Executive Director, Clair Schuman, urgently, may call: 604-812-3772. Currently ACT is interviewing prospective employees so we would appreciate general enquires to wait until we are up and running in January. Clair can be reached by email at: cschuman@autismcommunitytraining.bc.ca For more information on ACT’s training program and our staff, board, and advisory council see: http://www.actbc.ca

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