[Nancy Walton]

Hi Again,

Much smaller post this time.

Laurie Romey has asked me to take on the
task of being the ASBC facilitator for Surrey.
We will both be at the next meeting which is
Tuesday Oct 8 (7-9pm) at the Victory Christian
Center.
Address: 6788 152nd Street.

Whether or not you are an ASBC member
please feel free to join us this evening. Also,
you don't have to be a Surreyite to attend.
Everyone is welcome.

We have no speaker, so I will be sharing
some ideas on what to put in ads for
therapists, what questions to ask when
interviewing and what my expectations are for
my team. Otherwise it is going to be a parent
discussion session.

I look forward to seeing you there if you can
make it.

Nancy Walton

[Nancy Walton]

Hi Everyone,
I have been meaning to add to my previous
post last week where I was saying that my
son, Casey, started doing much better when
our new consultant, Bo, was watching over his
programming and keeping things easy (not
too challanging). I was mentioning this
because at the same time I was increasing
his wheat intake and his language started
getting better.

Our consultants programming was important
but there were 3 more things that may have
increased Casey's success.

1) For a variety of reasons, Casey had been
only getting 23 hours per week. Dr. Sallows
felt that he may be forgetting material, or even
regressing because he wasn't getting enough
hours per week. We increased to 35 hours
(not including preschool) and Casey has
never regressed since. I think this is an
important point because at the conference (to
answer Anonymous Oct 1) Dr. Tristram Smith
told us about his Lovaas replication results.
He did not have as high a recovery rate as the
original Lovaas study did, but he also
averaged 25 hours a week. I know that WEAP
had better results at their replication and they
kept to the 40 hours. Dr. Smith admitted that
his collegues feel this is important. I think it is
more important than he lets on. More hours
meant much more success for my son. Not
just in how much he learned, but whether he
was able to retain. (that should answer your
question Melanie Sept 30)

2) At about the same time of hiring Bo, I also
had the luck of finding a very experienced lead
therapist. I had been running the therapy
program myself, on top of working almost full
time and taking care of a sibling. I was unable
to keep up with the "book". I did OK for the first
year, but as time went on, I got worse at
keeping up. Casey's review items
consequently slipped away unoticed. My new
lead, Amanda, was diligent at keeping an eye
on all the programs. Making sure review was
done regularly, moving programs along, etc.
This helped Casey not lose review items.

3) Our lead, Amanda, is also very good at the
art of "manding". Manding is a way of getting
the child to use speech to get what he/she
wants. We were doing a crude form of it
before both Bo and Amanda. I think if we had
of had these two working with Casey 2 years
ago, when we first started, he would have
been speaking a long time ago. Casey now
mands over 100 times per session.
Amanda regularly attends Verbal Behavior
conferences
(Carbone is one source) and has brought
skills that fit with ABA to our team. (Amanda,
correct me if I have the terms wrong).

So, in summary, I have found 4 important
components of my Lovaas program
-having a qualified consultant who can pick up
on difficulties
-maintaining well over 30 hours/week
-having a good lead to keep an eye on
programs
-developing good manding skills

Nancy Walton (Casey's analyzing mom)

[Nancy Walton]

For Tuesday's Anonymous and other new
parents:

ASBC stands for Autism Society of B.C.

I joined the autistism parent club almost 3
years ago. At that time, I was told by my doctor
to contact featbc. I also contacted ASBC just
to get as much information as possible. At
this time, the ASBC board and some of the
people who worked there, were very
unsupportive of ABA therapy. They were
mostly unsupportive of going to USA to get
qualified consultants as ASBC claimed that
there were equally fine therapies and
consultants here in BC. Thus, many families
who do ABA left ASBC and chose to get
support from featbc.

Why was ASBC unsupportive of Lovaas ABA?
I think it was because ASBC was (and still is,
but I'll get to that later) funded primarily by the
BC govt and thus supported BC service
providers. ASBC membership includes many
service providers who's jobs are at stake if
parents turn to Lovaas ABA.

Lucky for me, I saw through their arguements
and found featbc to offer nothing but solid
scientific evidence for doing ABA with proper
consultants. Many people didn't even hear
about ABA for years, because their doctors did
not know about featbc and ASBC wouldn't tell
them anything about it. When these parents
learned about ABA, they were very angry that
they weren't told of it sooner through ASBC.

Last spring, parents who were doing ABA
decided it was time to get involved in ASBC
and we voted more ABA parents on to the
board of the ASBC. It will take some time to
undo the old structure, but I can tell you that
the ASBC now represents us. Before, it didn't.

So I urge all new parents and old, please
become members of ASBC. Sign up every
member of your household (individual
memberships). Because the non-Lovaas
service providers in B.C. want to regain
control over the ASBC and if they have a
majority, they can do this next spring. ASBC
should be in the control of parents and self
advocates, NOT service providers.

ASBC is important to feat parents for two
reasons
1) it is the first contact (if not featbc) for new
parents who need information about starting
ABA treatment as soon as possible

2) it will be influential in future decisions
regarding individualized funding (the old board
did not support this funding since it was a
threat to govt. service providers)

The question why are we angry at ASBC is a
long and complicated one. It goes deeper
than I have written. But more importantly, we
have taken steps to see that it meets the
needs of our children now and it is important
to keep it that way.

Join ASBC now. Please, for our children's
sake.

Nancy

[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)

[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)

[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)

[Nancy Walton]

I would like to take up David Chan's call:

I would like to collect "storys" of experiences
you have had with SEA's. Especially let me
know of any problems caused by union
issues. Give rough dates, and any details
you wish to include. Please resend anything
you may have already posted.

If you send this to me, I will let you know if I
plan to show them to anyone else and to
whom. I won't send them on if you object.

Please send your stories to
wiklo@shaw.ca

Also feel free to contact me through this e-mail
if you have any questions about this.

from: Nancy Walton (Casey's mom)

[Nancy Walton]

Congratulations to Deb (for setting it up) and Jean and Bohdanna for such an excellent radio show exerpt on CKNW(web page given in an earlier chat e-mail).

Many topics were covered, but I was especially delighted at the excellent coverage of the issues of lack of ABA funding and difficulty getting proper ABA aides in the schools. You guys hit these two nails on the heads.

Thanks so much for your help in our cause.

Nancy (on behalf of Casey)

[Nancy Walton]

An excellent example of GENERALIZATION:

Casey has just recently finished a Shapes program in his therapy. This morning after a few grunts on the toilet, he got off and looked in to see what was there. Excitedly, he exclaimed "MOON…MOON…MOON!!!"

I went up to the toilet and looked in. Sure enough, there was a little moon shaped poo.

Nancy

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