[David Chan]

To quote Blanche Dubois in a "Streetcar
Named Desire"—"I have always relied on the
kindness of strangers"; that about says it all.

Everything that Anonymous put in the post is
essentially accurate and possible in a perfect
world.

Even if you do all YOUR part in providing
letters, support etc. that in no way guarantees
what you would expect to be a logical and
reasonable outcome for your child.

It’s about human intransigence and the
inability to see beyond the tip of their nose. It’s
about rigidity, and self-interest. Putting a
human face on any issue doesn’t mean that
the issue will be resolved in your favor. I’m not
anti-anyone, but I’ve had "NO" said to my face
many times, and as an adult, and freelance
photographer, I am quite used to rejection.
When it comes to the welfare of your child it’s
a pretty hard pill to swallow.

And if the answer is "NO", then what? The kid
still has to go to school doesn’t he? The
tension is so thick when he goes to school,
you could cut it with a knife. You have a few
more meetings and presentations, and still
it’s unresolved. Almost three years ago we
made the really painful decision of pulling the
kid out of school for the balance of the school
year; it really boiled own to the bitter truth that
"no school is better than bad school" If I recall
correctly, (I may be off by a few days), we had 7
meetings to keep the kid in school for 22 days.
He stayed out of school for the balance of the
school year. Yes, I’ve been there; and done
that; the only thing I didn’t get was the T-shirt
and Video.

In the end it was "the KINDNESS of strangers"
that got us through, that and the grace of G_d.

Sorry to sound like Eeyore,

Still Grammatically -Challenged
Mr. P’s Dad

[David Chan]

An Addendum to the last post

Providence is one thing, but how do we go
about getting that paradigm shift to happen?

We continue to demonstrate that ABA treated
children can be successful in school settings
and we continue to insist on the appropriate
and necessary supports in school. Just
because it hurts when you bang your head
against a brick wall doesn’t mean you should
stop. So we soldier on. There is no better
argument than success. These children WILL
succeed if they are given the necessary help
and more importantly the opportunity to
succeed.
As for vision, well, FEAT moms and dads have
Vision-a-plenty, or we wouldn’t be on this chat
board. I added this post, because, frankly, I
hate rhetorical questions. Keep up the great
work, all.

Mr. P’s Dad

P.S. Mr. P’s mom is still checking my
grammar and punctuation. But the ESL thing
is a losing battle.

[David Chan]

It’s time for another rant…

Or perhaps more like a ramble.

My take on SEA’s teachers, School districts…

The bottom line is, if you HAVE to do the
"these are rules" dance, the discussion is
over before it’s begun.

They don’t want to play, and you can even
compel them to play, and they may even
pretend to play, but they won’t play. Namely,
you get to hire who you want and train them,
but there is no guarantee that that person that
you have hired will follow the protocol correctly
for the duration of the school year.

It is very difficult to maintain Quality Control
once that person is hired to be your child’s
SEA and in the event that things go awry,
because of the unions it’s also very difficult to
remove them. Especially since you are the
one that tried so hard to hire them in the first
place. Paradoxical isn’t it?

This is a reality, and I really have no hard and
fast answer to this particular conundrum. We
are thinking long and hard about a SEA for our
kid too, but it’s such a delicate balance. On
the one hand, your kid is on ABA so that they
can generalize and work with more people.
On the other hand, a poorly implemented SEA,
can cause the kid’s behavior to "Go South"
really fast. Now you not only have the problem
of how the kid is going to fit in the class, you
are also doing damage control.

Am I saying there are no good SEA’s out
there? No, I am not, Are there no sympathetic
teachers and principals out there? No, I am
not saying that at all.

I have said this many times before. Absolutely
no one is as invested in your child’s well
being and progress as YOU are. For every
one else, no matter how well- intentioned, and
dedicated, it’s a job. And let’s be honest
about this, who needs hassles at work? It’s
only a JOB. You are all starting to see where
this is all going.

What do we really need in the school system?
We need to have a paradigm shift, from "How
do fit these crippled kids into our school?" to
"We need to have these children in our
schools because they are valued part of our
community". What we need is vision. Until
such time, as school districts sees these
children as VALUABLE assets in their school,
and that the presence of these special
children when provided with the necessary aid
is an enrichment in the lives of the students
and staff, just as much as a music program,
or a field trip to the science museum, they will
continue on their path of accommodation and
tolerance. Accommodation is a place you stay
for a little while and leave, and tolerate is what
you do to a bad smell.

The axiom that I have found in these past few
years is—"It’s all great, until it isn’t great any
more", or worse, "It’s all great until it’s all
goes to h___ in a hand basket". School is
such an integral part of every child’s life, and
that’s why I am writing this cautionary note.

I can’t lose faith in people, because I like to
believe that people are fundamentally good
and they have basically good intentions. The
only caveat that I have is – Be careful, be very,
very careful.

May providence be kind to us all.

Mr. P’s Dad

P.S. on a lighter note: Mr. P’s mom, checks my
grammar

[David Chan]

Let's face it –autism isn't sexy. Our provincial
government has committed many millions of
dollars just to have a BID at the 2010
Olympics. Please note, that's a bid, which is
to say we are just trying to get it to come to
Vancouver for what, a 2 week period. So we
might not even get the games here; it 's just a
gamble.

Don't get me wrong; I love a party as much as
the next guy. Maybe even more if given an
opportunity, but basically the messages that I
am interpreting is …

Let spend a whole bunch of money on
something that we might not get, so that if we
get it we will get Fed's to provide money for
infrastructure, like road improvements, and
other basic stuff and our local economy will
get this mystical boost, which we aren't
creative enough to provide for ourselves.
This gamble is even more astounding when
you consider that many cities that have hosted
the games have not benefitted financially or
otherwise in the long run.
As for the autistic kids and adults, hey, there
aren't really a whole lot of them (only, 1 in 250)
so hey in a province of 3 million, they don't
really count for a whole lot. So at the end of
the day, we'd rather have a party.

I guess that's how government works, but then
again I'm just cynical and self -serving 'cause I
have a kid with autism.

What happened to us that it's more important
to have a party, than to help those who can
least help themselves? Sad, isn't it?

Party-pooper,

Dave, Mr. P's Dad

[David Chan]

Dear Anon,

It's pointless to churn this thing back
and forth ad nauseum. Yes we all get it –the
costs are high. So is high quality
chemotherapy. What's the point?
Oy, trust me I know what the costs are. I will
repeat my orginal point regarding costs. Until
all alternate therapies become free, I will stick
to what I know works. Even if the other
therapies WERE FREE I would still be doing
ABA, because it's effective.

As for the science part, no one is making
you buy the studies. The New York State
studies, the studies in Wisconsin. You've
already made it clear that your mind is made
up that Lovaas isn't your thing, and that's OK
by me. As parents and caretakers we make
what we feel are the best choices for our
children, and you have made yours.

This board is a pro ABA group of parents. We
have found a methodology that has been
successful for our families, and that's that.
Why beat it to death, this study that study,
whatever.

The parents in this forum have made their
choice, and please repect that. Let's just
move on. Let's help these kids, cuz they ain't
gonna be kids forever.

Please, do not feel compelled to respond to
this post.

Thanks, and all the best. I mean that with no
sarcasm.

Dave, Mr.P's Dad

[David Chan]

"I also chose not to do it because the original
studies came from Nazi Germany when they
were trying to make normal human beings
into robots. A far cry from what I wanted for my
son."

Where in the world did this come from? If you
choose not to formally use an ABA program for
your child, that's fine, and your choices as a
parent should be respected. However,
making inflammatory remarks like those
shows a decided lack of respect for the
parents that are doing a program with their
children. That, alas ,I feel is a non-starter. I
really find the reference offensive.

Let’s face it every time you give your child,
typical or otherwise an instruction such as "it's
dinner time, come and get it" and then you
prompt them to come to table, what you are
doing is ABA, you shape their behaviour to get
them to come to the dinner. ABA. You bet,
because if you didn't do that dinner would
never get eaten. Expand that concept of
instruction and follow-through to a global
context for your child with autism, add data
taking, you have in a very simplistic and
abbreviated form,an ABA program.

I do not disagree with the fact that the
programs are costly, but that just gives
everyone more reason to lobby for necessary
funding.

"There are many protocols for autism that
have some basis in science and are backed
with scientific trials. Double blind studies….
DMG, Secretin, and nutritional supplements,
music therapy, auditory integration to name a
few. I would caution any one into thinking that
any one therapy is the panacea for autism."

Correct, in any given day there will be many
"therapies" for Autism. Bottom line, the
"treatments " that are listed aren’t FREE and
funded either, We all understand the concept
of Caveat Emptor,"let the buyer beware". We
are basically a cash cow for anyone who has
a fix for our guys. Parents will always pay,
because we DO want a magic bullet to help
our kids, let alone cure them.

The scattered eclectic approach just doesn't
work. Here is my reason for this observation:
You try, this, then you try that, and there is a
little improvement here, and a little there, but
nothing earth shattering, so you move on.
Meantime, every quasi success or failure
lowers the expectation you have for the kid,
because if the "STUFF" is so great then how
come my kid isn’t doing better. It’s either the
"Treatment " or it’s my kid. Well do we really
want to go down that alley?

How many things can you try? Most of the
"Other Therapies" do not address two really
important issues that affect our kids.

One, self-stimulatory/ socially unacceptable
behaviours that places them apart from the
mainstream society

Two, their ability to process information which
is not the same as other folk

At the end the day what we really want for our
kids is to be functional and happy in their
community. You can't have that, if your are
stimming and lacking necessary skills.
ABA will get you there. Instantly, no, but surely.

As for the ASBC V. FEAT thing. People are
fundamentally opposed to change. I like my
hot dogs with ketchup and mustard. You
know Chili Cheese dogs are really good. The
point, The new ASBC board hasn't done
anything, other than exist, so let them do their
thing, have an open mind, you may be
surprised. You may like it.

That's my two cents.

Dave, Mr. P's Dad

[David Chan]

Throwing the old man a bone.

The boy is been sick like a duck these last
three days, hacking and coughing his little
guts out. Stayed home from school. Had to
pick up sister from school. oy
Yesterday, had an aquaintance call extolling
the virtues or Vitamin threapy for kids on the
team, but I digress

Had to pick up some last minute groceries
before dinner. I gotta tell you guys I am just
wiped with looking after these guys, and just
losing my mind. So we get back from the
store. I open the front door and walked in.

I wait, and wait, hey where are the kids?
the last thing I said was help your sister out of
her car seat.

Well, what do you know I look out the front
window, and the kids are at the trunk of the
car getting the groceries out.

I didn't open the trunk, I just walked in the front
door. Frankly, I had forgotten all about the stuff
in the trunk. I ask the typical one, I says, "did
you tell him to get the stuff or what?"

She responded by saying "he just used his
brain, I didn't help him."

Regardless of how reliable the 5 year old is,
The boy threw the old man an ENORMOUS
bone. It is absolutely a thing of beauty to see
things gel in this kid's life.

Just when you are the most tired, run down,
and even a little dejected. The kid throws you
a bone, and you pick it all up and do this ABA
stuff all over again.

THANKS kid, I love you!

Mr P's Old Man

[David Chan]

What do you call it when you see kids that
walk on their toes, spin around, and not talk; at
the same time they are flapping their arms
and wearing completely in appropriate items
of clothing?

hmmm, I would be calling that behaviour
consultant pretty darn quick, you think?

Well, hundreds of parents pay many hundreds
of dollars to have their children behave in this
exact way. And when they exhibit these
behaviours, they actually applaud.

How unnatural is that? Oh yes, they have to
practice these behaviours too, over, and over
again. It's down right rigid!

It's called dance class. The toe walking is
called ballet, and the arm waving and
spinning is called choreography. As for the
inappropriate clothing, it's called a costume.
Put music to it, and it's all good.

Sometimes we are questioned about why we
have ABA programs? We are also told that
what we teach these children to do is
unnatural and rigid. Some times we are told
The children should just be allowed to be
THEMSELEVES. Yes we pay many
many dollars too. There is one difference
between and ABA and dance class. Dance
class is optional.

Just something to think about when some one
questions the motivation behind an ABA
program.

Mr. P's and Miss V's Dad,

P.S.
Miss V is the one that has to practice to dance

[David Chan]

sorry I posted twice

Dave

[David Chan]

Well, while I was at the spirited AGM, the boy,
his mom, and grandparents were taking in a
bit of culture. His sister's 2.5 hour ballet
recital. Now That would be 2.5 hours with one
15 minute intermission. The performance
was a great success and a fun time was had
by all.

Why post this non-event?, well remember, this
was the kid who would have a Grand Mal
tantrum in the parking lot of the church.

So what's this got to do with the FEAT chat
board?

Using a Lovaas-based visual schedule with
plenty of built in re-inforcers, we were able to
teach the young man, that sitting NICELY in
church was a very GOOD THING.

This then became generalized to sitting nicely
in movies, weddings, and other public events
requiring prolonged periods of sitting. Did he
really really enjoy the recital? Well, did any of
us really? I am informed by reliable sources
that he was grooving in the appropriate place
during the performace, so I guess it wasn't all
just being polite.

Its not a miracle, just systematic hard work
using the ABA principles. The tantrums in
church were four and a half years ago, do we
still have tantrums, yeah, of course we have
our awkward moments, but usually not at
public venues. One significant hurdle he has
overcome. There are more hurdles ahead to
be sure. but one or more hurdles at a time.

Still Jumping over hurdles,

Mr. P's Mom and Pop

P.S. Mom and the Lovaas consultant are the
brains behind the operation, I'm just the leg
man so to speak.

[Author]

Posts