[Debra Antifaev]

oops!
I wanted to add that this problem is two-fold. We have parents with home-based programs, training ABA tutors, but not able to get proper school coverage. I already know of two ABA trained SEA's who are now working with children who are not in a ABA home program and several parents who DO have an ABA program but DO NOT have an ABA SEA!!!!
I just see an awful mess in the making and I feel powerless right now as to how to prevent it.

Deb

[Debra Antifaev]

Well said Roxy-babe.
I wanted to draw parents' attention to another problem I am witnessing and get some input.
In the Surrey School district we also worked a long time to have competant ABA trained SEA's in our school.
Now we have parents who do not have a home-based team requesting ABA SEA's. One parent even told my friend that she lied on her application, putting in the name of her friend in the area for "Consultant". (I cannot blame the parents as they have heard that ABA is best and they want the best for their children but, thanks to chronic underfunding, they cannot afford to run a program on the miserly $500 per month)
This is a problem though because a child cannot be "fixed"(as some parents believe)on approx. 3 hours supervision at school and ABA SEA's cannot design effective programs. The undesired result is that the schools will begin saying that ABA "doesn't work", etc. They are already eager to see the project fail and leave it up to our CUPE/BCTF administration to allow the complete ruin of years and years of hard work. Part of me suspects that they are already aware of this problem and simply not motivated to correct it.
Any ideas on how to motivate??

[Debra Antifaev]

Did anyone see the CBC show (from back in February, I think) call "Making Sense of a Confusing World"?
A friend (school teacher) is looking for a copy….if anyone taped it.
Deb

[Debra Antifaev]

Oh for crying out loud…..why is the last post so angry, Anne-Josee?
I am a mother too and I do know Cyndi. I admire what she has done with mothers on the move. I agree with her that severely autistic children should have the choice to go to a separate school I took exception to the statement in the news paper that implied ABA is somehow "bad" or "wrong". I am afraid that, in her capacity as an advisor at ACT BC, she could in fact mislead parents.
My statement was simple: If "the parent" had not used ABA on her children she should not disparrage it for other parents…that is all. Use what ever you want…that is my message…..just please stop telling parents who can potentially be helped….that ABA is bad.

I am confused as to why our children are different, though. I watched a friend of mine, with a beautiful daughter with diabetes, go through the pain treating her every day. Her daughter would cry, "No more needles! No more Needles!" It was absolutely heartbreaking, but no one ever suggested that she not be treated. Today she is 13 and gives herself her needles.

When the people of a different religion had 6 babies and did not want to give them blood-transfusions…..the government forced them!! If I was to deny my son effective treatment for cancer/diabetes/severe ear infection the Government would insist, but oddly enough the Government does not step in when it comes the treatment of special needs children….why?

There is no need to "Yell at me over email" Anne-Josee. I am a mother too. I love my child too. I saw an inaccuracy and a criticism of my treatment and I corrected it.

That is who I am……my name is on this post.

Deb

[Debra Antifaev]

I am sure Anne-Josee's post is in response to my letter regarding a very negative criticism of ABA (in the Vancouver Sun) by a parent who had never used ABA. I would just like to point out:
1. I do not believe that every parent MUST use Lovaas ABA. I am perfectly aware of how gruelling, time-consuming and expensive it is. I advocate every day for this very effective treatment to be covered for ALL PARENTS WHO WANT TO USE IT.
2. The effective results of ABA are not just my opinion, they are backed by peer-reviewed studies.
3. I was responding to another parent's criticism of a treatment she obviously knew nothing about.

All I ask is that if you know absolutely nothing about a topic…please do not criticize it PUBLICLY…you could steer other parents away from a treatment with the potential to truly help their child. Tell us what you are doing that is positive and effective in your childs life….not what is negative.

Please also remember (to quote my other children) "She started it"!! I was responding to a very hurtful, inaccurate, uninformed criticism of the treatment I had chosen for my son. I was simply defending myself.

Debra

[Debra Antifaev]

I am having some problems at the Canadian Scholarship Trust Plan that I felt I should make FEATer's aware of.
I was trying to dissolve my severely autistic son's RESP…I did not want the money back, etc, I simply wanted it transferred to my younger son's RESP. It has now been two years and the money has "disappeared". Every time I phone them to ask when it will be deposited to the younger son's RESP they ask me for another condition to be fulfilled. The last request was for an evaluation from a Registered Psychologist…which I sent. (from the extremely well respected Dr. Davies)
NOW they are saying that the evaluation I sent them (the one accepted by every other Government agency in the country, including Rev Can!) does not contain the phrase "will DEFINATELY not be attending post secondary"
It does, however, contain the sentences…"functioning at a one to two year old level"
"needs contant supervision and prompting. Often requires assistance with regular tasks"
"Is non-verbal"
"will require full-time teaching assistant"
"Will require adult supervision for the rest of his life"
The report even documents his extremely low I.Q. But all this is still not proof enough for the Canadian Scholarship Fund.
If I close the plan, I lose all the money. If I get another evaluation I am out approx. $180…..What to do…. what to do???
So this is just a little warning to people in case you were debating an RESP, they are very hard to get out of if the worst thing imaginable happens and your child will not be attended post secondary……be very careful….we have little enough money to throw around with the expenses incurred by our kids….
These people just add to our troubles….

My two cents with a warning….
Deb

[Debra Antifaev]

I, too, am enjoying the Vancouver Sun's series on Autism. I have written many times to the Sun and never had my letters printed. I have tried to keep the letters factual, non-insulting, etc, but I have always assumed the Sun did not have any interest…so I am very pleased with this series. I am attached a recent letter with regard to the current series…I hope they will print it….
Deb

Editor,
Parent, Cyndi Gerlach tried Lovaas ABA but "stopped after a couple of days. She felt it was too gruelling a protocol." While I would never deny anyone their choice in medical treatments, if we had all employed this ideology I would have never have learned to ski, my husband would not be training for a half marathon, and my other children would not ride horses, play hockey or read! In addition, my severely autistic son would have never been potty trained, learned to ride, swim or communicate with his family. It is gruelling and expensive and heartbreaking and hard on the rest of the family (my husband and I have five children) but for some of us, quitting is not an option. How can someone publicly criticize something they tried "for a couple of days"? If you don't want to use ABA, that is your prerogative but to deny it's effectiveness without actually trying it, that is just irresponsible.
The message of FEAT is simple and it is an ideology employed in the treatment of almost EVERY other medical condition. Give us what science says is the most effective treatment TO DATE and continue to study Autism until a better treatment or, better still, a CURE can be found.
I lost a good friend to leukemia in 1989. She died while receiving the same cancer treatment that had saved many others. While she was being treated with the best science, to date, researched continued on more effective treatments for cancer. It was all covered by medical.
No one said "there is no cure for cancer, so we are not going to treat you". No one said the treatment is too gruelling and painful so we are not even going to try. No one asked if my friend was "worth" saving. She was given the option of the treatments that had been proven effective thus far. If she had chosen a different, unproven treatment, it would not have been covered by medical. Simple.
There is not always a logical explanation as to why some medical interventions work for some people and not others, but it does not mean that we stop trying. It means we use what the studies say are effective today and we keep searching for a cure.

Debra Antifaev

[Debra Antifaev]

I wanted to add something else I thought interesting. Russ Hiebert (my only-Pro-some-lives) MP has written many letters to the Peace Arch news opinion page in which he almost dislocates his shoulder trying to pat himself on the back for his part in the "National Autism Strategy" All of his letters have been printed on the opinion page, even one letter criticizing a parent of two children with Autism!
None of our letters, except one very altered letter from Roxanne, criticizing his Government have been printed. Isn't this supposed to be an OPINION page…why are they changing the letters??
I wrote a letter to Mr.Hiebert last week and sent a copy asking the Peace Arch to print it. It was one paragraph…no profanity….mentioned bill C-304 and asked Mr Hiebert how he intended to vote. I sent it to other parents to vet. I was again not printed.
There were letters from the same old tired guys who write every week (couldn't we just skip one of their rants and print something from a new writer….especially on a day when the house is voting….???Isn't this what is called "topical news"?)
Whenever something happens in the Autism community I get a call from the Peace Arch asking for my comments…as do many other parents….I think our next response should be:
"If you are not going to fairly represent us in your paper and on your opinion page, we will make our comments to your rival..The Now….."
Just my two cents folks….I am feeling very ignored, frustrated and betrayed right now.
Deb

[Debra Antifaev]

Went to Nancy's "Garage Sale" and it was great, even though some real fast-footed parents beat me to the "Franklin" books!!!!
Just want to take this opportunity to thank Nancy for organizing it all. Where you find your time and your ideas and your stamina, is beyond me, Nancy. There is never any complaining, never any need for recognition and you, of all people, SHOULD be recognized for all your hard work.
Not all of you may know that Nancy was also moving house, renovating, organizing therapy, baby-sitting a traumatized husband (he hates moving!!) and STILL organizing the monthly ASBC meetings through-out.
Thank You!

[Debra Antifaev]

Hi Everyone!

Just a quick question (one I believe was asked and answered here last year!!!)
Are consultants required to charge GST?
I know my last consultant had to pay GST to the Government and had an awful time reversing those charges (don't get me started on Revenue Canada!)
Once the charges were reversed for the consultant, we were reimbursed and were not charged GST again.
What's the bottom line?

Thanks
Deb

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