[Debra Antifaev]

Hi Praveener!!

There is a pass at Disneyland and, the last time we were there, they really couldn't have been more wonderful and accommodating.
In the town "square" (which is actually a circle!) you simply trot across to City Hall with your child. They will give each of you Mickey Mouse stickers to wear on your clothing each day and a small card with the number of people in your party. The child with autism MUST be on the ride with you.
The pass allows you to either stand in the "Fast Pass" which has a shorter wait time or, on some rides without fast pass, it allows you to enter through the back of the ride and be seated next.

A small warning though: this card is for children severely affected by autism/mental and/or physical disabilities. If you have a very high functioning child or a recovered child, simply having the diagnosis will not be enough. I know of a couple of parents who were upset that they didn't "qualify" for the pass. This is sad but I guess you have to console(sp?) yourself with the fact that you are actually quite lucky NOT to have a severely disabled child.

Have fun!!

[Debra Antifaev]

Isn'•••• sad?
Veronica's story is, in fact, very common. It seems that the 13 million the Government claimed to have "put into supporting children with Autism" has been actually put into a new bureaucracy of well-paid paper shufflers who phone every so often to tell you your documentation is all wrong.
I had a similar problem.
It seems the Ministry FOR Children and Family Development would rather we put our children into care………they try so hard to make that the easier option.
It is all so very frustrating, there are literally hundreds of people making money on the backs of our children and they don't even seem to realise that they are the reason there is no money left to trickle down to the families.
Try to count all of the agencies that claim to "Support Special Needs Persons"…..then count their staff…….no mathmatical genius required here…..

[Debra Antifaev]

Hey all!

Theresa T., I have the wrong email for you. Could you please email me at
dmantifaev@shaw.ca to confirm whether or not my new tutor is registered in your Jan 26th Workshop?

Thanks a bunch,

Deb

[Debra Antifaev]

Don't be offended, Kam, and imagine this post spoken in a slow, caring manner. Sometimes the written word can appear so cold and that is not my intention. We research and post because we care. Some of us have had experiences with the unproven, great sounding "treatments" in the past and we write to warn others not to make our mistakes.
When you endure the heartbreak of having a child with a disability you can sometimes make a decision based on what you are hoping for rather than what is truly likely to happen.
There are many "snake-oil salesmen" in the business of preying on your vulnerability and, believe me, there are a huge number of people in Government and out making very good money to simply shuffle your child through inadequate services.
I wanted to try everything when my son was diagnosed….from chelation to dolphins……I had to learn the hard way.
My comments really are just because I want to help other avoid the pitfalls of the "Autism Industry"…..

[Debra Antifaev]

oooohh, and while I'm chatting…..
is anyone doing a new therapist (beginner) workshop in the next wee while?
Sharon??
Theresa??
Karen??
I need a New Therapist Beginner Workshop…one of your really good ones….some Saturday soon….any announcements??

[Debra Antifaev]

Well, people I had never heard of Snoezelen…I had to look it up…
On the Wikipedia website it describes something very similar to sensory integration which, those of us with some experience know, can actually be quite harmful to children with severe autism.
Wikipedia goes on to say that "research on the benefits of treatment is scarce…" (one small study of 9 adults….hardly peer reviewed high quality stuff)
I don't want to speak for Sabrina, Jean, and the others who fought to keep science based treatment as the cornerstone of this chat. I certainly don't want other parents to feel attacked or that they cannot post their thoughts and feelings and struggles on this page.
I simply think we should be VERY careful what we choose to promote and make sure (for our childrens' sake) that we do the required research.
I don't think (and this is just my opinion so no flaming please…)that snoezelen meets the requirements of truely "science-based treatment".

[Debra Antifaev]

I must agree with Susanna. It is sad because, as parents, we should be supporting eachother. Some consultants are just not a fit with all families and you should be able to speak freely about your particular experience.
Sadly, this is not always the case.
You best bet is sometimes just a "no comment" or "this particular professional was not a fit with our family".
(I don't mind saying that I have the most fabulous consultant in the world right now….yes it's true!!!)
My advice: you should never regret being completely honest with what was YOUR OWN experience, but try also to be kind…..sometimes a little difficult, I know….

[Debra Antifaev]

There are alot of people who have made alot of money on the backs of our special needs children, Catherine.
When the Government was trying to stop the public outcry of parents demanding treatment for their children many were told that ABA was "bad". Parents were told how Ivar Lovaas used to hit the children as an "adversive" for bad behaviour. This was, in fact, true. It was also the 1960's when kids were not in car safety seats, people smoked everywhere, husbands could hit their wives (without a public outcry) and parents were actually encouraged to discipline (read "hit") their kids.
All of the above are now considered unacceptable but there is a small, determined pocket of people who like to drag up the past to discredit the present.
I have five children. They all have been unruly periodically.
They are all now relatively well behaved.
The principal of ABA is that if you do things correctly you will be rewarded and if you are rude/unruly/lazy, etc you will NOT be rewarded. The "rewards" are varied. My 12 year old, who craves attention, is rewarded by the A he is now receiving on his report card in grade 7. My 8 year old loves being chosen to read in front of the class because he is now a good reader (this was not easy…I might add!!!!!)
My autistic son loves Wiggles movies and tickles. My children "work" for these rewards.
Ask the speech path how this common approach (endorsed by all parenting experts for normal children and called Positive Parenting, by the way) can be HARMFUL to children with autism?
My best friend is also a speech path and she admits that she was a sceptic a few years back. She had been trained in a very child-led "pragmatic" approach to teaching. Over the last 5 years she has been forced to admit that the ABA children are not only easier to teach now, they also are a better fit in the classrooms as they get older.
You cannot let a severely autistic child "lead" you. They don't know where they are going!!
The problem lies in the fact that our children are all so darn adorable when they are first diagnosed. I will be the first to tell you the ugly truth: they do NOT stay adorable and soon the world will start to reject them AND their families. It is amazingly heartbreaking to watch.

Sorry, I did not mean for this to turn into a long winded rant…..I am supposed to be working!!!

Summary:
ABA…..good, effective and kind
SLP's…..very good at teaching speech….not so good with behaviour
OT's….effective if you have a good ABA program going first.

Neandertals who have not read the current (30 year old!!!)research and are trying hard to get your money….um….neandertals….

Good luck!

Deb

[Debra Antifaev]

Thanks for writing, Pam. I think that most of us do forget those amazing shoulders we have stood on.
I actually heard a woman (who has been receiving the 1667.oo per month since her child was diagnosed)saying that she was "sick of feeling like she should say "thank you" all the time". Huh?
You will have to excuse me, as this is just my humble opinion, but I believe we should NEVER forget where this Province has come from. Just as we remember the veterans every year with the saying…"lest we forget" we should always be grateful to those who gave freely of their time and energy for the good of us all.
There was a time when institutions were the only option. How incredibly sad.
Gratitude is the LEAST I can offer.
I am so grateful to each and every member of Auton.

[Debra Antifaev]

Welcome to the world of Autism, Tony and Gloria, you have quite ride ahead of you!!
Your best bet is to stay in contact with the people of FEAT (as I discovered the hard way!) They honestly do take alot of leg work out of your learning process as we have almost all tried (and failed)with alternative, untested treatments at one time or another.
FEAT also has a list of consultants that may be a little more "selective" than some of our Government lists (which have to include everyone with a remotely related degree who wants to hang out a shingle, whether or not they are actually reputable consultants)
You have made a good first step, I don't know what area you are in but a 'phone call to the autism society will also keep you abreast of the parent information meetings, which can also be very helpful and will help to make you feel less alone(as will this chat).
Good Luck!

Deb

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