[FEAT BC Admin]

In this discussion area, please feel free to share your experience in implementing A.B.A. programs in the school system. We would particularly like to hear from those parents who converted their school teams to A.B.A. We’d like to hear the nightmares as well as the success stories.

Any insight that can be shared by school-based special education assistants to help parents would also be very meaningful.

Topic

[Dione Costanzo]

“Medicare for Autism Now!” Rally

Sunday, March 2nd, 2008
2:00 p.m. to 4:00 p.m.
Shadbolt Centre for the Arts
6450 Deer Lake Avenue
Burnaby

Bring the whole family! As well as lots of outdoor space and a playground, there will also be a Kid's Area set up with crafts and toys right at the Rally.

Directions:

The Shadbolt Centre is centrally in the heart of Burnaby, just minutes from Vancouver, New Westminster and the North Shore. Travel along the Trans-Canada Highway to the Kensington South exit to Canada Way. The Centre is located just behind Burnaby City Hall on Deer Lake Avenue.

Map to the Centre – http://www.city.burnaby.bc.ca/__shared/assets/Shadbolt_-_Map1759.pdf

The Shadbolt Centre is well served by public transit. The 144 SFU/Metrotown bus links the Centre and the Metrotown and Burnaby Lake Skytrain stations. For more information contact the Translink information line: 604-953-3333

Parking:
All parking at the Shadbolt Centre and surrounding locations is FREE to the public. Parking at the Centre includes 70 underground stalls and 130 parking stalls at the north end of the building.

Deer Lake Park has a number of additional parking areas including Burnaby Art Gallery, the Burnaby Village Museum and street parking along Deer Lake Avenue. Parking facilities outside of Deer Lake include Burnaby Central High School and City Hall. For special events and festivals parking attendants will be on hand to help manage traffic flow and assist in directing cars to alternative parking areas.

SEE YOU THERE!

[Debra Antifaev]

“Medicare for Autism Now!” Rally

Sunday March 2nd, 2008

2:00 p.m. to 4:00 p.m.

Shadbolt Centre for the Arts

6450 Deer Lake Avenue

Burnaby

Don’t forget the Rally folks. Take two hours out of your day to remind this Government that they have let our kids (and their exhausted families!) down. Please take a look into the face of your child with Autism and try to remember what we are fighting for.
Forget our differences for just one day.
A story goes that during World War II even the British and the Germans lay down their weapons, in the midst of battle, to sing “Silent Night” at Christmas.
Surely we can come together to cheer for a better life for our kids!!

[Debra Antifaev]

Hi Everyone!

Tune in to the Bill Good show on CKNW (am 980 radio) tomorrow (Tuesday Feb 26th) at 11:00am to hear Jean Lewis and Scott Hean discussing the “Medicare for Autism” initiative.

Please listen and call with your comments and support.
This continued failure to properly fund children with Autism affects us all.

They will also be talking about the “Medicare for Autism” Rally this Sunday (March 2nd) at the Shadbolt Centre for the Arts. I am sincerely hoping that everyone related to a child with Autism (parents, siblings, consultants, therapists) will take two hours out of their day to show their support.

Deb

[Dione Costanzo]

re/MEDICARE FOR AUTISM NOW! RALLY

Map to the Shadbolt Center

http://www.city.burnaby.bc.ca/__shared/assets/Shadbolt_-_Map1759.pdf

Sunday, March 2nd, 2008
2:00 p.m. to 4:00 p.m.
Shadbolt Centre for the Arts
6450 Deer Lake Avenue
Burnaby

[Mike & Jean]

GREAT NEWS!!!!

We are delighted to announce the much anticipated book,"The Complete Guide to Autism Treatments – A parent's handbook: make sure your child gets what works!" is now available for sale. The author is FEAT of BC founder, Sabrina Freeman, Ph.D.

Prior to making decisions about treatment, this book is an absolute must for every parent with a newly diagnosed child.

The book was inspired by parents of children afflicted with autism. After speaking with several thousands of parents about various treatments and answering similar qustions over and over again, Dr. Freeman realized that parents need a clear way – a guide – to help make appropriate treatment decisions for their child. To that end, Dr. Freeman gives her scientific evaluation of most of the major and minor autism treatments available today, and then personalized the analysis by telling reader whether or not she would use the treatment on her own child. In other words, at the end of the day, how did she apply her understanding of the science to her own child? With this book, it is Dr. Freeman's sincere hope that everyone will be able to evaluate all the current and future autism treatments available. It is cucial to be able to ask the right questions and find the flaws in the science behind every purported treatment, or to find the eveidence, where it exists, that the treatment is effective. At a minimum, understanding the scientific method will protect thousands of children from quackery and, hopefully, provide parents and professionals with the tools to discern those treatments that are effective for children afflicted with autism.

Section One of the book, scrutinizes the range of treatment options offered to parents of children with autism and uses the tools of the scientific method to evaluate each treatment method so that parents can make sure that the treatment they have chosen for their child stands up to the claims made by the treatment provider. Some of the therapies discussed include but are not limited to: Behavioral Therapies – ABA, Intensive Behavioral Treatment, and the offshoots and distinctions of Intensive Behavioral Therapies such as Positive Behavior Support and Verbal Behavior Therapy.
School-based (non-behavioral) therapies such as TEACCH and Giant Steps. Child-lead/Parent facilitated therapies such as Floor-Time, Relationship Development (RDI) are covered. Biomedical Therapies such as Diet/Nutrition (Gluten and Casein-free Diets), Secretin and Vitamain B6 and Magnesium are discussed. Speech and Language Therapies such as the Hanen Method and the SCERTS Model are also discussed. And finally – art therapy, music therapy, sensory integraton therapy…and yes, Dolphin-assisted therapy and many more are all thoroughly reviewed. Section Two of the book is designed to provide a background in science for parents or professionals who are newcomers to the scientific method. The book can be used as a reference gride, flipping quickly to a specific theatment of interest, or it can be read as a comprehensive gide to every autism treatment advertised in the marketplace.

Until Monday, February 25th, the book can be ordered by calling the FEAT of BC office number: 604-534-6956. After February 25th. it can be ordered on-line at skfbooks.com The cost is $29.95 plus tax.

For those of you who don't know author,Sabrina Freeman…she received her doctorate from Stanford University in 1995. She is a social scientist and author of the popular books, Teach Me Language and Science for Sale in the Autism Wars. She founded FEAT of BC in 1996 and has tirelessly advocated for the rights of children with autism to science-based treatment It is due her vision, dedication and tireless work that BC families now have access to both funding and effective autism treatment. In 2002, she was awarded Queen Elizabeth's 50th Golden Jublilee Medal for advocacy work on behalf of children aflicted with autism.

In this book, Sabrina once again delivers what parents so desperately need – sound advice and practical answers which are clearly explained. As in all her work – she tells the truth.

Speaking for myself and others, families in BC and Canada owe Sabrina Freeman a debt which can never be re-paid. Once again Sabrina, thank you so very much!

[Louise Taylor]

“Medicare for Autism Now!” Rally

Another reminder to attend this very important event!

We are also pleased to announce that Stephan Marinoiu will be speaking via pre-recorded video. He is the father of a 15 year old boy with autism who became so desparate and frustrated that he walked in blizzard-like conditions earlier this month from Toronto to Ottawa to gain the attention of our parliamentarians.

Also speaking at the rally via pre-recorded video will be Harold Doherty from New Brunswick. He is the father of a 9 year old boy who has autism, an advocate and lawyer. He authors daily in his blog, "Facing Autsim in New Brunswick"

Bring your children, family, neighbours, friends etc. on:

Sunday, March 2nd, 2008
2:00 p.m. to 4:00 p.m.
Shadbolt Centre for the Arts
6450 Deer Lake Avenue
Burnaby

Why should you attend?

• Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families are still bankrupting themselves in order to provide treatment for their autistic children.

• The current and limited funding provided through the provincial government’s social services ministries could evaporate tomorrow with the stroke of a bureaucrat’s pen. No legislation exists within these ministries to protect or enshrine our children’s medically necessary treatment.

• In 30 years of “advocacy”, the only two initiatives which have achieved ANY success for our children and families has been litigation, and more recently, focused political action. Both were brought by the members of FEAT of BC – a 100% volunteer organization.

• Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. It is time for the Federal Government to act! We need to let those who govern and those who wish to govern know that they are going to be held accountable at the ballot box in the next federal election.

Who should attend?

You – and every fair-minded Canadian you know!

Children with autism suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sakes, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.

Featured speakers will include:
Dr. Sabrina Freeman – Executive Director, FEAT of BC and parent
Jean Lewis – Director, FEAT of BC and parent
David Chan – Director, Autism Society of BC, FEAT of BC and parent
Dubravka Skrijelj – FEAT of BC member and parent
Dr. Glen Davies – Clinical Director – ABLE Developmental Clinic
Dr. Melvin deLevie – Pediatrician
Beverley Sharpe – FEAT of BC member and parent
Louise Witt – Director, Autism Society of BC, FEAT of BC and parent
David Marley – FEAT of BC member and Political Strategist

Please RSVP to info@featbc.org and forward this notice to anyone you think will be interested.

FEAT of BC: “ To see justice is done”

[Norm Tailless]

Hi Luke's Mom,

Originally we even hired someboy who was already an SEA on our ABA team, hoping to use her in the school as well. But she was from another school district. It turned out she couldn't work for two districts.

Another problem was that at the time our ex-consultant who had promised to help with this process, did not come through at all. While waiting for her, we lost much valuable time. By the time we were able to talk to the school about this, although the school board was open in principle to us suggesting a qualified candidate for the job, they couldn't (or wouldn't?) give us too much time to do so. So the job got posted. Frankly I think the school was reluctant to do this. It works a lot better for them if the SEA is directly one of their staff. They treat them as a pooled resource. They want somebody who works for them and not for the parents.

At this point I think the correct response for the parents depends on the individual case and the needs of the child. I think for some kids, the nature of their needs would make it absolutely essential to have one of the team members in the class (and at recess). The parents of these kids should not compromise. These kids would need their ABA-trained SEA full-time. For our kid who is high functioning, we drew the line for "minimum requirement" at the need for the SEA to have ABA training and be willing to work with our consultant.

Also if all kids get $16,000, which doesn't cover a full-time SEA, then I thought parents with high functioning kids should be more flexible with sharing SEAs so resources can be freed-up the kids with higher needs. Again, I think we can do this as long as we ensure the needs of our child are met. In our case, I think the school is appreciating our flexibility and has taken great steps to ensure our child's needs are met. On a few occasions when we asked for certain things for our son, they took it further and implemented the measure for the whole class.

Anyway, this is only our experience. I am sure it is different for each kid. However, I think the only constant for any kid on the spectrum is the need for the SEA, teacher, and IEP team to at least understand the basic principles of ABA, and be able to apply it appropriately. I wouldn’t accept anything less than that.

Good Luck,

Another Mom

[David Chan]

Dear Luk's mom,

Please be very clear that there are really good people in the world and they care about the progress and potential of your child.

That said, understand that school is an employment opportunity. It's about wages and working conditions. To misquote my old school districts motto."The Focus is on the employee (learner)". Whether the home aide makes the life of the teacher more or less easy is of little or no consequence.

Be nice, play nice, but at the end of the day if "They" don't place your child's needs first, then all bets are off–(Hewko vs. the school district of Abbotsford)

Sorry to be so grim, never forget, NO ONE has more vested interest in the well being and progress of a child/student than his or her parents.

Fight the good fight

Long time FEAT dad, fought and left the public system in 1999

Mr. P's Dad

Mr. P rocked his midterms; how about that !!

[Luke’s mama]

Dear Another Mom

Could you elaborate a bit more on why/how it was difficult to implement a member of your home team to the school?

What kind of difficulties do schools have doing that? I only see the advantages so I would like to know more cons.

To my knowledge the person can be paid less than a union position and if they use ABA it will make the situation much easier on the classroom teacher. So I see this as an all around happy situation.

Please accept my gratitude for posting this much info. It helps to know that we can see the positives still through so much negatives.

Have a good weekend
Luke's mom

[Norm Tailless]

Hi Luke's Mom,

We have an Asperger boy too and we are lucky to be dealing with a very cooperative school. But despite the fact that both the school and the school board are very cooperative and eager to help, we did not manage to get one of our therapists to be our SEA. Sometimes that is very difficult for the school to arrange. However, our situation still works very well.

I find that the success of your IEP is very much dependant on how good your consultant is. Some consultants treat the school like the "enemy" that you need to "control". If you have a professional consultant who is able to meet with the school team regularly and understand their issues and provide constructive suggestions instead of making unreasonable demands (given the school's reality) things will go a lot smoother.

One of the school's realities is that the $16000 or so they get per child will not fund a full time SEA. So, it is natural that Asperger kids will lose many hours of their SEA to the kids with higher needs. Then there are all the kids who are not diagnosed, but still need help. We started having our SEA full-time and we are losing her time more and more, because there are a few other undiagnosed kids who need her help. But that is not so bad as long as our son's needs are met. In fact I prefer that his SEA helps many kids, because it makes him stand out a bit less.

The thing we need to do is to determine what our son really needs, make sure that need is articulated clearly and professionally (it helps if it comes from a professional consultant rather than an emotional mom) at the IEP meetings and is reflected in the IEP goals.

There will be times that for some reason or other the school will not do the thing you really believe should be done (e.g. they might keep sending your kid to the resource room to avoid the problems his behaviour can cause for the class, instead of trying to work harder to help him adjust to the class schedule). In these situations, I get quite excited and my first impulse is to march down to the school. However, I have had more success with subtle work arounds to make sure the school's concerns are addressed first, before bringing up my issue.

Also I have watched our consultant at the IEP, she can really speak the same language as the school team. She never makes a direct demand. She listens to the school team and works her suggestions into something that they brought up. So, even if the person in charge of the IEP is not coming around to do something that we might want, our consultant indirectly enlists one of the other professionals on the school team to back her up. When she wants to suggest a strategy for the school for dealing with our son (instead of saying "we should do this"), she often refers to actual cases from her experience in other schools and describes what worked and what didn't.

Anyway, this is my experience and I think I have been lucky to deal with a very nice school and a very good consultant (after we fired our very bad one). I feel we all have mutual respect for each other and that helps. On the other hand, there were many times when the school did not want to do things the way I wanted and I backed off to make sure I didn't become a "problem parent" in their eyes. If you just stick to the issues that need to be addressed and not try to tell the school how to address them, I find they can come up with creative ways to deal with the issue on their own. For example, since the SEA can't be attending to our son all the time, they make sure he is sitting with the types of kids who are more likely to "look out" for him to make sure he finishes what ever task they are doing. As long as it works, it's up to them figure out how to do it.

Good Luck,

Another Mom

[Author]

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