[Jenn Ralph]

Can those who have experience or opinions (good or bad) on Monarch House please email me privately at Jenn.ralph@shaw.ca

Thanks,
Jenn

[Jenn Ralph]

Hi all,
On behalf of a friend in Victoria whose son just got a diagnosis of Aspbergers,
Please email me privately at jenn.ralph@shaw.ca to help with who are quality ABA consultants in the Victoria area (and any to avoid).

Thanks in advance,
Jenn Ralph

[Jenn Ralph]

Unfortunately Jacqueline…it is true. We all know it is the tip of the iceberg when they expose these……so disgusting and infuriating.
This was reported in the Schafer Autism Report May 20th – article cut and pasted below.
Jenn

$35 for 1 year – or free!
http://www.sarnet.org

Mother Records Autistic Child's Alleged Abuse

By Jaye Watson for 11alive.com. is.gd/BpT3

Atlanta — Stefan is an 11-year-old boy with Autism. A judge ruled he was physically and verbally abused at school.
He is an Atlanta Public School student but because of his special needs, he goes to schools run by a state agency called Metro North.
They line the outside of each leg — bruises from knee to hip. A judge has ruled a school employee caused these injuries to 11-year-old Stefan Ferrari the day before pictures were taken.
Stefan cannot speak. He has Autism, and is non-verbal.
He could not tell his parents — couldn't tell anyone — what happened to him. But he had a mother who believed, before this happened, that something was terribly wrong at his school.
Stefan went to Margaret Mitchell Elementary School in Buckhead, where he was doing well, but he was transferred to the Marshall School in DeKalb County in August 2008, due to renovations.
That's when the Ferraris say things started to fall apart.
"I knew something was really wrong for the first time on September 8th," said Stefan's mother, Carolyn Ferrari.
That's when she said Stefan came home with bloody scratches, bruises and ripped shorts. His behavior over the next month deteriorated.
"It was getting worse and worse," Carolyn said.
Marcelo and Carolyn Ferrari say they repeatedly told school officials they were concerned. So the mother of a boy without a voice found a way to give him one.
"It's about the size of a quarter," Carolyn said about a microphone she sewed into Stefan's shirt. She sent him to school with it on October 21.
It would be his last day at Marshall.
"As soon as he took his boxers off to get in the shower, I noticed it," said Stefan's father, Marcelo Ferrari. "And I was like, 'oh my God'."
Marcelo was shocked by the severe bruising covering his son's legs. He and his wife went straight to the tape.
"Sit down stupid," was one of the things they heard on the tape.
"It was horrifying," Carolyn said. "I was visibly sick. I felt like I was going to vomit."
Carolyn and Marcelo stayed up all night listening to hour after hour of what they say was the neglect, ridicule and abuse of their son.
+ Read more: is.gd/BpT3

• • •

[Jenn Ralph]

Hi all,
I'm posting on behalf of a friend in the Victoria area:
Her son is now 8, she always knew something was up but no doctor had ever given them any direction or diagnosis…but many excuses.
Now…they have seen a neurologist and that doc said to get psychoeducational testing done (to get the formal diagnosis)and told the mom to "do some research".
I can't believe this stuff is still happening…

Anyway,
all of you Vancouver Island people, especially those in the Victoria area and school districts:
1. Who should she get psychoeducational testing from in the area
2. Are there any paeds yet who order/acknowledge ABA on the island that she would benefit from seeing, and
3. Can you please email me with your contact info if you can support her directly with any advice, experience and support for local-specific issues (treatment, consultants, school districts, psychologists, advice on bladder issues, social issues, etc., etc., etc.) She is new at all this and is overwhelmed…as we all were (and still are!)so any local contacts would be appreciated.

Thanks so much.
Please contact me at jenn.ralph@shaw.ca and I will forward her all the messages until she registers on FEAT chat board herself.

Jenn

[Jenn Ralph]

a good example of why the Canada Health Act needs to me changed…J

This letter printed in the Charlottetown paper from an Alberta resident:

March 15, 2008 THE GUARDIAN (CHARLOTTETOWN) PAGE: A6 (EDITORIAL)
Autism services not so great after all
Editor:
Re: 'Families dealing with autism are in crisis: senator' (The Guardian, Feb. 23, 2008):
In a recent article you wrote about families dealing with autism, it was stated that in Alberta families can receive up to $60,000 per year up to the child being 18 years of age.

I am in Alberta and have two young children with autism and want to make it clear that you would be hard-pressed to find any child in Alberta getting the therapy they truly need.

The Alberta government provides a very beautiful act (Family Support for Children with Disabilities Act) that is full of holes and open to interpretation by many social workers. The act is failing our children as well as all the families that move from elsewhere to Alberta thinking they will get marvellous services for their children. My oldest son is four years old (autistic), severely delayed, can say around seven recognizable words, and was cut to 13 hours of therapy per week in September. He is now caught in the 'holes' of the FSCD Act and as we go through the very lengthy and costly appeal process, we will not get a decision until May 19, 2008 – nine months after the regression began. And let me tell you, that is just the beginning. We are joined by many, fighting all we can, and with all the energy we have left to get the services our children need. So, please, let families know it is truly a Canadian problem to get services for our children and that the Alberta FSCD Act is not all it says in black and white.

Allison Pike, Lethbridge, Alta

[Jenn Ralph]

Hi all,
Just saw this on the Ontario email. It seems American but the same fight to get intensive behavioural treatment covered…good video.
Jenn.

The band, Five for Fighting, is generously donating $0.40 to Autism Speaks
for *each time* the video is viewed the funding goes toward research
studies to help find a cure. When you have a moment, please visit the link
below to watch the video and pass it along to your friends and family.
They are aiming for 10,000 hits, but hopefully we can help them to surpass
this goal.

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

[Jenn Ralph]

Hi Todd (and whoever else is interested)…

Thanks for your comments. Your questions are honest and intelligent, and ones that I and many other parents have had and continue to have.

I disagree with you re: behavioural approach only "ad infinitum". There is more research being done now in the last few years than ever before in history combined. And I also disagree with you re: Lovaas' first study and the first parents – there was alot of use and talk about "adversives" then, which Lovaas did employ in the earliest studies, so, no, it wasn't guaranteed that it would be better than say, the special ed of the time. I think those parents took a risk that made sense to them – the same way many parents now are doing biomedical inquiries and testing, while doing and not interfering in their ABA programs.

If you would like to discuss further to hear our experiences and knowledge from 6 years of research and experience, do feel free to contact us at any time. Jennifer.r@shaw.ca

[Jenn Ralph]

Hi all.
The reason this chat board and forum is ABA-related only is due to the purpose of the site, which is sharing information about evidence and science based treatment for autism.
Traditionally, and even right now, "ABA only" falls in that category. Evidence-based, and science-based treatment means there is published data, and improvements in one, several or many children is not just anecdotal and is proven to be statistically significant, preferably with a control group. Lovaas ABA provides us with this knowledge.
That being said, there is increasing evidence (and therefore more research being done) that there are indeed many biomedical causes and treatments in many children to what we know as "autism". This site is not the place for me or anyone else to discuss that issue, because it is not yet "proven" under the aforementioned conditions. The FEAT board has always said that any other treatment that becomes proven through evidence will be welcome on this site, and I think it is only a matter of time before the biomed info proves that out.
We should also keep in mind that all of the families who were in the original Lovaas studies were, at the time, trying a treatment that was then unproven.
If anyone wants to discuss further – jennifer.r@shaw.ca

See you all March 2nd.

[Jenn Ralph]

To Amber and all others in similar positions:

I will share what happened to us in the hopes that you will save time and your children will get treatment sooner….

We waited about 8 months to get into Sunnyhill (which they now call FHAN I assume) for a diagnosis. Thankfully, someone suggested earlier to get private diagnoses, which we did, but everyone we saw (child psychologist, paediatricians) either said not to do ABA outright or downplayed it significantly, even though they all agreed my daughter had autism. The child psychologist (not from ABLE clinic by the way) told us not to do ABA but to do "play therapy" with her, in her office, 3 times a week (at $150/hour with no data supporting…hmm).The doctor at Sunnyhill verbally told us not to do ABA ("too harsh for our child") and said speech therapy was her greatest need and to get on wait lists. This, after he diagnosed her with autism disorder w mild to moderate mental retardation. (By the way, I have yet to see any controlled studies showing quanitfiable improvement from speech therapy, not to mention the fact that he would have known that even if we got speech therapy, it would not be intensive intervention! So if you ask me, he broke his hippocratic oath of "First, do no harm". I can't believe this is still going on – they should have their medical licenses taken away from them…). We then waited..waited…on these wait lists for community based speech therapy and OT (which my child actually never really needed) – we didn't know any better at this point – what parent does? – which would translate into an hour or two a week if that, once you finally got to the top of the list.

Thankfully, we found FEAT through other parents(though not from any of the doctors, SLP's, OT's, "Supported Child care" or MCFD social worker – the list goes on – everyone purportedly in "autism support services") and started our ABA program, albeit 9 months later than we could of, and we have NEVER looked back! It was the turning point where all of our lives changed for the better.

So my advice to you, is:

1. Get the diagnosis the fastest way possible (that's probably privately), to get the funding as soon as possible, to start the ABA program as soon as possible. Despite what SO MANY people will tell you…THIS IS WHAT NEEDS TO BE YOUR PRIORITY, and it needs to be 40 hours/week.

2. Get on wait lists now for consultants – there are more children than qualified ABA consultants.

3. Use the experiences of those with many years of knowing who is who and who is qualified – the families who are on this chat board. You can post a question eg. "if anyone has feedback about Joe Smith, contact me at_____". That is what this forum is for…

Knowing that the situation has not improved that much since we went through it 5 years ago…it still makes me so mad – and sad for our children. But there is hope, and it is in getting evidence based treatment- and it is called ABA. It is worth every minute and every cent. You will see.

[Jenn Ralph]

ABA THERAPIST

To join our behavioural intervention team for our 7 year old daughter in the South Surrey area.

Training and supervision will be under the consultation of Dr. Sara White.

Flexible Scheduling (2.5/3 hour shifts, 2-3 times weekly).

Requirements:

• Energy, Enthusiasm, Reliability, Dedication
• Attendance at bi-weekly meetings (1/1.5 hours)
• Affinity toward children – Excellent play skills a must
• Excellent command of English language
• A minimum 1 year commitment
• A minimum of 3 references
• A clear criminal record

For further information, please call Jennifer Ralph at (604) 812-4341 or email jenn.ralph@shaw.ca

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