[Barbara Rodrigues]

To All Parents – Especially new parents!
Things have not always been so easy for the under 6 set – it was through sacrifice and battle that the funds you now receive so easily were won through the courts. Many years before my son was not so lucky – I was cut off from all funding –not once but twice – I walked a picket line for over 100 days in protest and to fight for funding for my son and all kids with autism. Today things are better – but it’s not guaranteed and when you venture into the school system – as we have seen with current events – things can go downhill quickly.
When I started this journey – I was a very shy and quiet person – I had to learn the hard way and with a lot of mistakes along the way how to effectively fight for the rights of my child. I had a lot of help from Sabrina Freeman and Jean Lewis. The first 3 weeks on the picket line – I cried I was so scared and so outraged at having to do this for my 4 year old severely affected autistic son. It took over 100 days and 1 ½ years to restore my funding for 6 months when then the Government cut us off again for another year. So please realize nothing is set in stone – they did it once – they may do again.
You parents have the opportunity to learn a great deal at this workshop – and to have more tools – and more ammunition/skills in order to effectively fight for your child. You may not need these tools now – but trust me – you will need them at some point – there is a long road ahead for both you and your child. Battles will have to be fought as we have seen in the recent news stories. If not battles then standards set for what you expect and your child deserves.
Please take this rare opportunity to learn one of the most important things you need to move ahead on this journey of autism that you share with your child – learn how to advocate for them. I am sure you would fight for to death for your child but this workshop gives you the skills and guidance to do that effectively and to take the raw emotion that we as parents dealing with incompetence find hard to do. Please attend this workshop – you will not regret that you did.

Barbara Rodrigues

All that is necessary for the triumph of evil is that good men do nothing.
Edmund Burke

Going in circles trying to get what your child needs?

If so – circle the date – Saturday, April 30th

The Medicare for Autism Now! Society presents:
“Getting it Done!”
…an “on-the-job * hands-on * this is how you do it”

Advocacy Workshop

Presenters: Jean Lewis and David Marley – founding directors of the Medicare for Autism Now! Society
and..
Guest speaker: Paul Caune, founder and executive director of Civil Rights Now!

Topics will include:

Advocacy 101

“It is not enough to be compassionate. You must act.”

As the parent of a special needs child, you must represent your child’s interests at school, in the community, everywhere. You cannot leave this job to others!
Advocacy is not a complex or mysterious process. It requires clarity, focus and persistence. It also requires certain skills:

This workshop will teach you how to:

• Gather facts, organize information, get ready
• Understand the Rules of the Game
• Plan and prepare for success
• Document, document, document
• Ask the right questions…listen to the answers
• Identify problems and propose solutions
• Drive the process

Advocacy at School

“A good education is the next best thing to a pushy mother.” Charles Schulz

This workshop will teach you how to:

• Become your child’s case manager
• Understand your school district’s Rules of the Game…who are the players and decision makers?
• Overcome objections and pitfalls
• Design an effective IEP
• Create effective paper trails, prepare documentation and letters
• Prepare for and manage school meetings
• Understand and use the Hewko decision

Autism treatment funding – securing its
future:

The landmark Auton decision is the only reason any autism funding exists today. This funding is in jeopardy because there is no statute law to protect it. The decision to continue funding or not can be made on a whim by provincial politicians.

• Learn the history of the fight to have medically necessary autism treatment universally accessible and covered by Medicare.
• Learn why we need a Canadians with Disabilites Act and an Individuals with Disabilities Education Act.
• Learn about recent and future initiatives to enshrine autism treatment under Medicare
• Learn why your children need you to get involved

We believe people learn best by “doing” rather than watching – so – be prepared to participate and receive on-the-job coaching. We promise you have never had this much fun in the school principal’s office. Several “guest players” will help us create some of the most common and troubling “school scenarios” for us to practice our newly-acquired advocacy skills.

Register today – don’t miss out, limited spaces available.

Saturday, April 30th _ 8:30 am to 3:30 pm
Burnaby Heritage Village Carousel Activity Room
6501 Deer Lake Avenue, Burnaby BC

$119.00 per person/$189.00 per couple – lunch included

*All proceeds will go to Medicare for Autism Now’s advocacy initiatives

To register: Email: mfanow@gmail.com or call 604-290-5737

About the presenters:

Jean Lewis:
Jean has been actively involved in the autism treatment movement since 1996, when her youngest son was diagnosed with autism. She became the co-founder and leading spokesperson for FEAT of BC (Families for Early Autism Treatment of BC), an organization dedicated to obtaining science-based autism treatment (ABA) within BC’s healthcare system. Jean was the co-chair of the litigation steering committee for Auton, a Canadian landmark Charter disability case. She performed the same role in Hewko, litigation aimed at ensuring children with autism gain equal access to BC’s education system.

In 2008, Jean co-founded the Medicare for Autism Now! Society, a non-partisan, national advocacy group focused on making science-based autism treatment (ABA) universally accessible and covered under Medicare. Since 1996, Jean has advised hundreds of parents about advocacy, treatment and education issues related to autism. She has presented at numerous rallies, workshops and conferences in BC, Ontario and the Maritimes. Jean is also a member of Civil Rights Now! board of directors.

David Marley:
David has spent his professional career as a trial lawyer, public policy analyst or senior political advisor at both the federal and provincial government levels. Since 1972, he has performed leading roles in over a dozen election campaigns in BC or Ontario. David’s political activity has involved organizing and presenting at many campaign schools and constituency association training sessions.

Throughout his career, he has served as a director of various not-for-profit organizations including, Medicare for Autism Now! and Civil Rights Now!, providing them with strategic counsel. In 2005 and 2008, David designed and helped implement a national political strategy for FEAT of BC and is a co-founder of the Medicare for Autism Now! Society.

Guest speaker: Paul Caune
Paul is the founder and executive director of Civil Rights Now! which is a non-partisan, all volunteer, not-for-profit society which advocates for public policy changes which will provide British Columbians with disabilities with equal access to the equality provisions of our Charter. He is also a board member of Medicare for Autism Now!

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[Barbara Rodrigues]

Thanks for posting Jean. Regardless of MY views for MY son on attending school – I fully support and believe that kids with autism or any special need deserve to be in school and attend school with properly trained aides and teachers. My heart breaks for this little boy who doesn't understand why he can't attend his class and I worry the damage that will do his self esteem. Up here is the same – zero tolerance for behaviors – so the kids act up due to poor aides no training – no consultants or FBAs or true behavior plans – usually no visual stuff and wham the kids act up – parents are called and kid is out of class/school. It's ugly and then the kid is not only not getting socialization but not getting taught and the parents are left dealing with a child who isn't allowed back in school but no one offers any answers/solutions….and please dont' get me started on restraining…..

[Barbara Rodrigues]

Very awesome Dave. While I don't judge if you use meds I am not a big fan for our kids as usually they don't help in the way that people want and come with all sorts of side effects including behaviors. That said again it's your child I don't live your life – it's your choice – no judgement BUT we are also drug free (although we are a very low dose of antiseizure meds that I fought for 4 years but ended up having to do due to status seizures) but it was never for behaviors and in fact increased behaviors at first.
That said – We have also managed at the age of 17 to get here with ABA only and that includes the horrid puberty ridden early teen years. I am a big fan of ABA – not just because of the science that backs it but because I see it works – it's not easy -it's not cheap and it is time intensive and it needs to be tweaked and figured out for your specific child/behaviors -goals – but it offers the best results for all our kids -regardless of where they are on the spectrum.

Again way to go Mr. P!

Barbara

[Barbara Rodrigues]

I too like Dave's(Collyer) idea about consultants being allowed into the school BUT I also think we need to first get all these kids their one on one's back – not sharing one – this needs to go back to what Paul Caune is trying to do for adults with disabilities -THE MONEY NEEDS TO FOLLOW/ATTACH TO THE CHILD/PERSON – so the school boards can't take from one child to help pay for this/that. Then the EAs -they need to be overhauled and the teaching program to train them needs to be overhauled – the cost of it up here is close to 3500,00 – they could certainly get in ABA training into it – would they be perfect therapists after -nope -but why not get them the basics – taking courses on ABA – and then as part of their 150 hour practicum make them work as therapists in an ABA program. Because no matter how great your consultant is as Dr. Richard Foxx said – he is 10% and your staff/therapists/aides are the 90% without them doing the work then it doesn't matter if you have Richard Foxx coming into the school – it won't work….so the EAs that whole situation needs help – okay plus we need more money for our kids – and yeah, okay there is none YET Victoria can find millions for all day kindergarten???? Our kids just aren't a priority.

And lastly Janet – I agree with you – some kids with autism would/do well being segregated – we have to stop thinking of it as a 'dirty' word – I don't mean warehoused in a room drooling and left neglected (which I know you weren't either) but in a well run room with one on ones dealing with specifics or areas the child needs extra help in – as they get older working on self help and community skills for the more severe and then integration where they can be successful/included. I am all for a well run ABA school and trust me if there was one run like Brigette Taylers in the US then my kid would have been in one and I think there should be choices/options available for parents. AGain I will bring up Dr. Richard Foxx (who as those of you know me is my idol ;-) said in one of his workshops – integration was not the best thing that happened to our kids (I am paraphrasing) Parents should have the choice of where they want their child with disabilities taught – be it a school – special school or at a home program – we should have the right to make that decision.

And lastly Janet I understand your pain – my lead therapist has been a teacher now for a few years in the school system and sees the things you do.

Barbara

[Barbara Rodrigues]

Wow!! Amazing Dave! Way to go Mr. P!!

Barbara

[Barbara Rodrigues]

Ah, Dave – you got my crying…thanks for sharing…it's true while there are many, many that come and go (and some kicked away ;-) there are some shining stars in our kids lives and the thing is – I think not only do they make a difference in our kids/our lives but our special kids make a big difference in their lives.

So proud of how well Mr. P is doing and you and your wife for all the crap you had to hike through to get him there.

Congrats to the whole family!

Barbara

[Barbara Rodrigues]

Mindi:

This is why the 'needs' of the child should be above 'union rules' when it comes to children…

It's not about finding the right 'fit' best person for your child but who has the most seniority and wants the job….it's very sad.

There was a lawsuit regarding getting ABA into the schools but I don't think it helped with the aide situation…it's very sad cause you would have to fight CUPE in order to get her removed,etc.

I hate to say it but I would interview at other schools and see what is out there – sometimes the battle that you might not win anyway isn't worth it and it's best to go elsewhere.

Here's a link that might provide you more help.

Good luck and I am sorry you and your son have to deal with this.

http://www.abasupportnetwork.com/school.php

Barbara

[Barbara Rodrigues]

Well said Stella! In fact re: ABA – one of my lead therapists finished her teaching degree and teaches in the classroom now….she has told me that her 'education' really didn't help her to 'teach her students' but that what she learned via ABA and teaching my son is what she uses. She uses the principals for both her NT and special students.

Barbara

[Barbara Rodrigues]

Dave:

The peer reviewed articles – are they on CABAS or Verbal Behavior? I ask because there are a lot of 'jump on the bandwagon' sidespins (as with ABA) I did some background checks and my understanding is CABAS doesn't follow (or the school in the website) B.F. Skinner's verbal behavior principals in full. Bobby Newman has it classed differently from VB in his book and the name is trademarked. Anyway parents whom I trust said that they would NOT recommend it to their friends with kids with autism. So I think for us to be supporting sending our best/brightest to get trained in it – well…..I would rather see us sending them to Penn State.

http://harrisburg.psu.edu/programs/master-arts-applied-behavior-analysis

you can email me privately if you wish as I know this off topic -sorry Bev.

Barbara

[Barbara Rodrigues]

Christine:

We used a sony video camera and there's a device that you can get that you can hook up to 'real time' so you can record but also watch via the tv in 'real/actual time' also. I am not sure what it's called (the hubby set it up) but I am sure you could call a audio store and explain what you need to them and they would know.

As for therapists – are they staying with you and being hired elsewhere? If so then that's a good thing as most of us can't give our staff the hours they require to survive. But yes, I have had this happen – especially with 'new' consultants – they come in – and then call your therapists after – I don't mind – what I find disrespectful is they don't call me first and ask if I am okay with it (which most cases I would be and as long as I discuss with the staff member that my son comes first in the way of schedules,etc.) There was a time when my son was going through some really really rough patches and his one awesome girl was having a time of it (due to behaviors and aggression,etc) and the new consultant offered her a job without asking me and I was upset – due to the fact that it's much easier working with a small docile child than a raging teenager…..on top of that the consultant offered me no helpful info so I was out a good sum of money and a my only good therapist at that time….but my staff I have now are loyal and well trained and my son is doing awesome – so if it's any consultation…the really good ones that are invested in your child and want to be there and really work to make a difference will stay and sure they will work at other places too and that's okay and if they don't stay with you – trust me -they don't have what your kid needs and good riddence. Dr. Foxx said your child needs to know that that therapist is there for him – that no matter – that they will stay and work with him and that's the staff I have now and trust me it's made the world of difference in both my son's life and mine. (that and I do have an awesome consultant who actually really worked with severe kids/adults -unfortunately he's retired and only kept us on or I would give you his number)

But don't be afraid to discuss your concerns with your consultant and explain your concerns. If she's good she will listen.

Barbara

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