[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Nancy Walton]

|´8¥?|@8|µ(§Sp(b|? §\e gfcf
diet. As I wrote your e-mail, I realized that this
really is a feat issue, because my decision
has to do with success of ABA. I would like to
share my story and my opinion (remember I
said opinion!!).

We never did take my son off gluten entirely,
so I can't boast that he was "gluten free".
However, he did have diahrea and was a
miserable little two year old when we
drastically cut back. The most he got was
chicken nuggets and soya sauce made with
wheat. We also used rice and corn
cereals…not gluten free, but wheat free. I
found cutting down on wheat and oats made a
huge difference in Casey's disposition. He
was almost giddy he felt so much better.

We continued to introduce it to him now and
then, his poo would go bad, and I'd cut back. I
kept waffling on whether I should go all out or
forget the whole thing. Casey had a history of
doing very well for a couple of weeks and then
he would have a huge set back. This had
been going on since birth. I thought food had
to do with it.

Last year we started with Bohdanna (our
consultant) on a more intensive supervision.
We focused on keeping the programs easy for
Casey so that he wouldn't get frustrated and
shut down. In the past, we had been doing
workshops while I know they can be effective
for many children, for Casey it created a
rollarcoaster programing. After a few months
with Bo, I was on one of my "forget the gluten
thing" spurts. Meanwhile, Casey was starting
to talk and succeed in programs. It wasn't that
the wheat was making him talk, it's just that it
WASN'T the wheat that was NOT making him
talk. So, I have continued to slowly increase
his wheat intake. It is still much lower than
most children.

Casey has made steady progress – no
regressions – for the past 10 months. I think
this is because of the change in ABA
programming and monitoring. This is how
important the ABA is. I think that wheat
allergies may parrallel Casey's autism
disability, but I decided to make him wheat
tolorant instead of completely wheat intolorant.
Parents who have gone the gfcf route, talk
about their child getting a smiggen of wheat
and the child goes bullistic. (sp??) I din't
want Casey to live in that cage. Even our
homeopath told us to reintroduce it at about 4
years old.

Remeber, this is just my opinion. Someone
may just find a gfcf link some day. But I do
know that kids recover without it. Me? I feel it
was programing that was setting our son
back. I didn't think that earlier, and I spent a
lot of sleepless nights trying to figure out what
I was doing wrong with my son (should I get
this test? should I do that remedy?). I don't
worry myself about "other factors" so much
any more. I am putting my energy into ABA.
That is what has been proven to work in peer
reviewed studies.

Nancy (Casey's now calmer mom)

[David Chan]

Hello to my fellow Feat members & visitors to
this chatboard:

I very rarely post myself on this chatboard,
since my grammatically challenged husband,
Dave, is the writer in the family:) However,
some of the recent posts have really inspired
me to share a few of my observations.

It is common knowledge to all of us parents
that raising a child (or in some awe-inspiring
cases, 2 or 3 children) likes ours is an uphill
battle that we fight on a daily basis, with no
apparent end in sight. The joy of watching our
children make substantial gains thanks to the
science of Lovaas and the dedicated people
who program and implement it gives us the
inspiration to carry on, but the struggle is ours,
nevertheless. Making the struggle worse of
course are those unfortunate individuals that
we encounter who just "don't get it" and don't
make any effort to do so. It is natural for us to
lash out at these people or anyone who
resembles them. I personally would love to
list, here and now, the names of everyone who
over the years has disadvantaged my child,
and there have been many. (However, that
would defeat the purpose of this posting:) )

However, it's also been my experience that a
parent of a child with special needs is held to
a much higher standard of behaviour than
parents of typical children. Maybe because
our children require so much help, we're
expected to be paragons of virtue to
compensate for it. Perhaps others resent how
much care and attention our kids require and
take it out on us–who knows? We who have
chosen to be Feat members have taken on
the added responsibility of representing our
organization. Naturally none of this is
remotely fair.

I appeal to all my fellow FEAT members to
remember that this chat is essentially a public
forum. (In other words, anything we say or do
can be held against us.) Before posting, ask
yourself the question "Will my posting advance
the cause of FEAT and our children, or
diminish it?" And to those non-FEAT visitors
to the board whose postings are particularly
inflammatory, please have the courage to
identify yourself and your agenda so that FEAT
members aren't blamed for the hurtful nature
of your message.

Mr. P's mom (sincere but not half as funny as
Dave;)

[Deleted User]

Just wondering if anybody had any thoughts on the upcoming workshop put on by the Autism Society "postitive behaviour support with families of children with autism spectrum disorder" Oct 5/02, Joseph M Lucyshyn, PhD. and Anne T Kayser.

There is mention of it's roots in ABA?? Just wondering if this is worthwhile spending $70.00 or not?

Thanks

[Deleted User]

To Nancy Walton

I read your post about reinforcers and found it enlightening. I am intrigued by the fact that you found your sons language improved after he went back on gluten. I am considering this for my son and I would really like to find out more info from you on this subject, however I know that the feat chat is not the place to discuss gfcf diets.

Would you be so kind as to send me your email address so I can correspond personally?

Thank you
Allison Lillies.
caneng@columbiacable.net

[Nancy Walton]

Whoops, Boy that chat board posting business can be nasty. My e-mail did not properly reflect my target. I was angry at the government, certainly not at Debra. Sorry about the misunderstanding Debra.

My concern was that I keep feeling like the government is finding ways of making decisions without letting us know where these decisions are being made. I want to stay informed about all decisions made regarding my son. I wasn't miffed at you Debra for receiving the notice. I was miffed that we didn't all receive the notice or hear about this in some organized manner. Especially if there is something to vote on. (Is there something to vote on?) Do you or does anyone else on the chat know what this center or organization is about?

It's actually thanks to the chat that we can keep passing these things on to each other, since the government doesn't seem to care if we all get informed.

How many of you feat members have received the Community Living Transition Steering Committee information in the mail? I doubt if it was just automatically sent to all parents for whom it concerns. I got it, because we happen to get respite from Comm. Living and they sent me a letter suggesting I join their assoc. I recieved the Steering Committee information because I joined the BC Comm Living Assoc. I feel that any parent that has an autistic child should have received this information, Not just Assoc. members.

Also, it's one thing that we have to join several associations in order to keep our voice heard. But I am frustrated when we don't even know what associations to join to make sure our voice is always heard.

Once again, sorry Debra, you know as well as I do how easy it is to misread (or in my case maybe miswrite) what is intended.

Nancy (Casey's still confused, but sorry mom)

[Jovana Ivanovic]

Re: The Community Living Transition Steering Committee

Thank you Nancy for the link to the Community Living Transition Steering Committee.

I looked briefly through the information at the web site and I cannot see how it represents us, parents of children with autism. I saw only one member of that committee who is a parent of a young child with a "developmental disability".

Also, this Committee had public presentations in Richmond and Burnaby earlier this month, but we (or at least I) didn't know about it. Who attended them?

Our government keeps refusing to understand that autism is treatable and that autistic persons are capable of making permanent progress when they receive proper medical treatment at the early age. What they tell us is, "Forget your hopes, give up your efforts, your child is disabled for life. But, we will still give you some money for your child, because we want you to think we care."
That hurts.

Jovana (Sofija's mom)

[Debra Antifaev]

Nancy,

I was faxed the notice. Sorry you didn't get one.
I posted the contents of the notice so that if somebody didn't receive one they could still attend the meeting and listen to what Minister Reid had to say.
I have no other information other than what was in the notice.
I did not say anything about Individualized Funding and I do not know if this will be discussed. The notice simply describes Ms. Reid as the "Key Note Speaker" and says to come hear Minister Reid talk about her plans for the future of special needs (including Autistic) children.
It is at "The Centre for Ability"
2805 Kingsway
Vancouver
Monday Sept 23rd at 7:00pm
I said to go if you are interested and to see what it is all about.

Debra
Ben's Mom

That's it folks!

[Nancy Walton]

Great reinforcer ideas everyone. My son's most recent favorite are these little pop toys. They are hemispheres, most commonly yellow with a little happy face on them, and you turn them inside out, set them on a table or hand or nose, and it curls back around suddenly, popping the toy into the air. My son has to say "pop" in order to get this reinforcer.

Another favorite is tops that sing familiar tunes when spun.

Oh yeah, and a toy cel phone that makes little tunes or expressions when pushing the buttons. (we have lots of these)

As for gfcf foods, we used to use cereals from Save-On Foods health section. There are some that are shaped like corn pops (but made with rice I think). My son also used to like Rice Crackers. My son is back on gluten and his language is getting better, so we don't worry about gfcf anymore.

Variety in reinforcers is important, but I also think how well the therapist can make the reinforcer fun is very important. For example when my son got tired of the POP on the table, the therapists started looking for funny places to place it, like on his hand or nose. The energy has to be high for my son to keep interest. It's amazing how different he can perform depending on the atmosphere that he is performing in. (Kind of like canned laughter makes you laugh more at sitcoms).

That's all for tonight.

Nancy

One more, my son likes his arm squeezed (he askes "squeeze" to get this one).

[Nancy Walton]

Regarding Debra's post Sept 17

Excuse my ignorance….but WHAT on EARTH is the BC Center for Ability??? I thought I was pretty up on whose controlling my son's IF, but somehow I have missed out on something.

Deb, where did you get this notice from? How is it you heard about it and I didn't (or others?). Could you give us all more information on what the BC Center for Ability is and why it is where Linda Reid will be announcing future IF policy? Also what would we be voting on if we joined?

If anyone could tell me more, I'd appreciate it.

Meanwhile, I just got a notice from the BC Community Living Association (I join anything that might have a say in IF). They sent me Information on the Community Living Transition Steering Committee. This is the committee that will have control over IF funds by next April. If you want to check this notice out, I think it is available at http://www.cltsc.bc.ca or you can email for info at info@cltc.bc.ca (according to my documents)

This committee is for all people with developmental disabilities. It is "accountable to the people it serves in community living". I wonder how this accountability will be recorded. How do I know my voice is heard? I noticed that there are several service providers and MCFD staff on the committee (ie Robin Syme). Will they steer things in a direction we won't like? Can anyone on the chat enlighten me?

Nancy (Casey's confused mom)

[Judy Anderson]

Dear Anonymous;

Regarding your posting on Tuesday, September 17, 2002. We are in the North Vancouver School District and have had the following wording located at the top of the "standard" S.E.A job postings for the 2000 – 2001 and the 2001 – 2002 school years: "Knowledge of autism and experience implementing educational and behavioural programs for autistic individuals required. Training in instructional strategies such as Discrete Trial Format required. Other relevant training for autism and related disorders desired." I have a copy of the full job posting which I can fax to you, if desired.

Due to the N.V. School Boards attempt to provide trained individuals to children with autism in A.B.A. programs, they created a new job category called the "Autism Support Worker". My son's S.E.A. for this year was hired under this category. I do not have a copy of this posting, but I can attempt to obtain one if you are interested.

Your can contact me at douganderson@acncanada.net or (604) 986-1975.

Good luck,

Judy Anderson

[Author]

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