[David Chan]

Hi all,

As Mr. P is going to high school, and meeting a whole new group of kids we felt that it was important for our SEA to give a kids a talk about him. So here it is folks. What we tried to do is to focus on his strengths, but also make the kids aware of how they could help him. I think children in grade 8 should have the capacity to assimilate more technical information, and make use of it. Let face it there will always be kids that don't get it and will never get it…..and We don't care about them any how. Have a look at the talk and chime in.

For many of you, you donÕt know who I am, My name is Mrs R. I am PÕs SEA, which means special education assistant. I have been working with P for the last three years both at home and at school.

P has a SEA because he has a medical condition called Autism Spectrum Disorder, or in short Autism. Autism is a neurological disorder, neurological means brain. Autism is not contagious, you canÕt catch it. What do you guys know about Autism? At the moment, scientist still donÕt know what causes Autism, but we do know that right now 1 in 166 people are affected by Autism Spectrum Disorder. The word Spectrum means range, and people are affected in many different ways depending on how severely they are affected. People with Autism have problems learning to speak, play, and socialize with others. With P, Autism causes him to have trouble learning math, and knowing what to say to people.

P has been getting help with his autism since he was 5 years old. He learns using something called ABA therapy, which stands for Applied Behavior Analysis therapy. ABA therapy is a science-based therapy that helps people with Autism learn and interact with others. In short what ABA therapy does is to break down tasks, and activities into small parts, so that each part can be learnt, and then connected. P has learnt all his skills this way, everything from having a conversation to playing the Saxophone.

For those of you that donÕt know him, P attended S H Elementary in L for the last five years. Like most of you, he had his confirmation in the spring. He enjoys reading and listening to music. Some of his favorite groups are ÒGreenday and U2. He likes to take pictures, kayak, and play basketball. Of course he likes hanging out with his friends. He was in the school band, last year, and learned how to play the Saxophone. P goes to a marine biology club at the Vancouver Aquarium every month. He loves going to movies, heÕs great at spelling, throwing Frisbees, Hitting a baseball, and shooting hoops. He has a personal trainer that he works out with, and he is starting tennis lessons. He is very observant and has an awesome memory.

This is your first year in high school, and itÕs overwhelming for most of you, as it is with P. Everyone makes a contribution when they come to school, teachers bring their knowledge and skills and gifts to school and so do all of you. As PÕs new friends and classmates, it is an opportunity for you to share your gifts with P, and he with you.

There are ways that you can help when it comes to being with P.
Some of the Things you can do are:

¥ Make sure he is paying attention to you. He should be looking at you when you are talking to him.
¥ Start a conversation and donÕt give up on it.
¥ Keep P on topic when he is talking to you.
¥ Set a good example, so he can learn what appropriate behavior is.
¥ Fill him in on whatÕs going on in your life, or in the world for that matter like sporting events, movies, and activities that YOU are involved in.
¥ DonÕt overuse his first name. Instead use, guy, dude, whatever is appropriate
¥ Just because IÕm a girl, doesnÕt mean that only girls can help him.

If you are not sure how to best interact with P feel free to ask me. Also if you guys have any questions about P, things that you arenÕt sure about, donÕt hesitate to ask me. IÕll try and answer your questions as best I can.

Living La Vida Lovaas
Dave,
Mr. P's Dad

[David Chan]

Our guy is 13, he's not crazy about balloons, but we don't go out of our way to avoid them either. If you think about it, i don't know anyone who ENJOYS a loud sudden startle.

I think there are least two issues here at hand.

One, is behavior support, and the other is systematic desentizeation.

Have a behavior plan for birthday parties. He will have more birthday parties, that's for sure. Always over prepare, worst thing that can happen is that you don't have to implement your support plan, and everything goes tickety-boo.

I have no problems disclosing that my child has Autism, however, there will be situations where you have no control of the enviroment, like in a mall, on the street, in a store. Your ABA behavior consultant can come up with a plan so as to desensitize your child to balloons, or what ever other phobias he might have. Don't try to figure it out on your own or get other parents advise, the reason is Autism is very variable, it affect each indvidual in a very different way. Your best resource is your ABA behavior consultant. Rest assure, that it won't be an easy fix, but with time, and proper intervention, it will all come together.

Dave is right about kids having tantrums, All kids have them, so it's no big surprise to anyone that a kid has a meltdown at a party. My typical daughter does it all the time. She's getting better as time goes by as she becomes more mature. As for our son, we are at the stage where we do use social stories to explain what is happening and what is an appropriate reaction should be. He will say, "The balloon is bothering me", and yes we have to tell our daughter not to torment her brother with her balloons, again it's a fairly typical sibling type interaction.

At the end of the day. Plan ahead. Plan for success, and plan some more. Our son has been on a program since he was 5 1/2 and we workong socially appropriate behaviors all the time. So, your guy will do fine at the next party, or maybe the one after that. Don't go in cold. Prep the kid. Be prepared, prep, prep and more prep. Don't avoid, prep some more, and try again.

All the best Tina, At the end of the day, it's one party, there will be others, stay on point, what we are after for your son to do well.

Hang in there,
Still living La Vida Lovaas

Dave
Mr. P's Dad

[David Chan]

Well,

Mr. P's sister is now going into grade 4, turning 9 in October. We do our very best to keep therapy times quiet for Mr. P, and it was always thus. From the very beginning, since Miss V was in-utero when we got Mr. P's diagnosis, we made a point of making sure that she got her share of attention. It hasn't always been sucessful, but in recent years, we have been able to brief Miss V about how her brother has learning time, and it's important for her to respect his learning time, as we respect her learning time as well.

We are very fortunate in that they will hang out to watch TV, and even engage in some play together. In some areas Miss V understands that, her brother has a much higher skill level than herself. She respects him because he can play the sax, throw a frisbee really well, ride a bike, rollerblade. We explain to her, that he has to try extra hard to learn all these things, and she could ask him to help and show her how to do these things.

ABA therapy is part of her life too, because she doesn't know any other way of life in our family. We also try and get the Therapists to interact with her independently as well, and sometimes even engage in things like game playing between the three of them i.e. TX'T, Mr. P, and Miss V, all playing the same board game, or sports activity like soccer practice.

Yes, sometimes they fight over the TV, when he channel surfs, but it all seems pretty typical interaction between siblings. When ever there is some friction between them, we debrief both kids, to the level that they can understand, and contiue as usual.

Hope that is of some use to you Lisa,

Mr. P's Dad
Dave

P.S. Mr. P is going to high school next Tuesday…..so the adventure continues……….

[David Chan]

So there was no school on Friday. Had to do something with the kids. Wound up with two other kids from Mr. P's class, and Miss V our daughter. All in all 4 kids in tow, we had to find something to do.

Plan A – Go Bowling, and Have Pizza, This is and Easy Sell.
This will take up two hours….Then what ?

Plan B – Go to the Parish centre and Make Sandwiches for the homeless.

Well, Plan A went off with out too much of a hitch,

Now Plan B is harder sell. You're Actually going to work. Got to the kitchen at our Parish. Put the kids on the assembly line. Miss V put too much mustard on the bread, but hey the kid's 8
she doesn't even put butter on her own bread at breakfast.

Mr.P was in charge of bagging the Sandwiches. He worked steadfastly, for 1.5 hours, no whining, or complaining, or off topic talking.

You all have to know what it felt like to be there. Here's this kid, who for the most part couldn't be in public school in kindergarten and Grade 1, now 6 years later, with lots,and lots of intervention,( We do mean lots…Still try to have sessions six days a week) doing something to contribute, yes folks contribute to people less fortunate than himself.

That cannot be a bad thing.

The kids all had ice cream after they finished the job. 20 loaves of bread, and a lot of sandwiches later.

The point here is that our children…the ones that are "special" CAN make a contribution. When most of their lives Adults in their lives have basically labelled them to be a drain on the system..(healthcare and educational)

When our guys are given to oppourtunity to contribute, they will, and maybe it's just stuffing sandwiches in a bag, but just by being there, and show their best possible selves. (I do mean the self that's had some serious ABA therapy) they contribute.

Never, EVER,EVER sell our kids short.

Two proud parents,

Julia and Dave

Mr. P, and Miss V parents

[David Chan]

if you missed the interview on NW, just go to their Audio vault, and you can hear the whole thing

Dave

[David Chan]

ya know I'm just not very bright, I think that's the problem, cuz i just don't get it.

I'm channel surfing the Knowlege network, a channel that I assume shows things that provide me with knowledge….and there is a program on Dolphin therapy. A nice academic voice comes and narrates what wonderful things that dolphin therapy can do. Then you hear the sound track, the therapist says to a 19 year old with CP, turrets, and Autism, "Do you want to work, or Do you want to swim with flipper ?", the women points to a picture of the dolphin.

OK, folks call this therapy, I'd just call it ABA with a REAL big reinforcer. but hey, I just take pictures and I don't have a lot of initials on my business card. pity.
So the conclusion of this is that if you say it's a therapy long enough, and make a movie that makes it sound like a therapy, then it's therapy….OMG

The other thing I saw that got my knickers in a twist is…in the paper today Linda Reid annouced that 100 BC children will be part of a study for the next five years to get a better understanding of treatment modalities.

Folks, did you know that Smoking causes Cancer, and how many years have they been saying that ? hmm I'm thinking 1960's This is not a slight at those of you that smoke, because if you are an adult, you choose to smoke, and you know what the consequences are.

We know, and have known, what the consequences are if you don't treat autism with science based treatment. Furthermore, these children didn't choose to have Autism, so why do we need another study? Please some one more learned…enlighten me.

A study is just a way of making yourself feel like you're doing something, and rationalizing your own exisitence, and not having to put up anything at all. The government folks look like they are interested in the problem, they get to throw some money at their friends, and it makes for a good press release.

I don't need to be right, I just need to have science based treatment for my Autistic child, and I don't need to see a another study for another five years to tell me what I already know.

Just another confused ESL dad with an Autistic kid

Dave
Mr. P's Dad

P.S.
"Since Autism is a culture, I think we need to have some Anthropolgist get into the act, and do a study and disertation on the ethnicity of Autistics,since they are the culture experts. My G_d, These are disabled children, how much simpler can it be, remember denile is not just a river in eygpt"

It is better to light one candle than to curse the darkness.

D

[David Chan]

hey folks

autism as culture,and just part of diversity
de nile isn't just a river in eygpt

just my two cents

Dave
Mr. P's Dad

[David Chan]

Hi folks,

First of all I would like to say that it was an awesome conference
on Saturday. Dr. Freeman, Dr. Newman, and Dr. Gerenser. (we
found out she just finished her PhD) were icredible speakers. It
certainly lit a fire under my behind, and also it was a great
reinforcer for our family, after all we are all behaviouralist here.

Having said that, I will move on to my next point.

Thank you DeeDee for posting the info on the FEAT confernce in
Seattle with Dr. Peter Gerhardt. It's quite a coincidence that Dr.
Newman had mentioned Dr. Gerhardt in his talk as well. So I
promptly went to the FEAT of Washington site, and looked up
the conference. the intro read as follows:

"Increasingly, attetion is being paid to needs of learners with
Autism Spectrum disorder (ASD) as they enter adolescences and
grow into adulthoodl. Bouyed by the transition requirements of
IDEA and equal access legislation such as the Americans with
Disabilites Act, professionals, families and learners with ASD are
beginning to reconceptualize the transition process in terns of
personal competence, satisfaction beyond the classroom; and
not simply in terms of vocational training. Where job placement
was once considered desirable, now the goal is career
development. In place of residential placement, we are no
beginning to talk about residential choices in support of qulity
of life"

And it goes on to describe the content of the workshop.

The more I read, the more angry I got. I came to the realization
that for us here in British Columbia going to a workshop is that
discuss issues the above described is simple folly. Why ?
Because we have NO LEGISLATION like the IDEA (indiviuals with
disabilties education act) and the ADA (Americans with
disabilites act) to back up any kind of implementation that we
learn about in that workshop. Let me extend that point further
by saying that attending any kind of workshop and conference is
simply painful to the extreme because you see what is possible,
and you KNOW even if you mortgage the farm to help your kid,
the rest of his world does not have LEGISLATION to support him,
so it is all for nought.

I for one am not a masochist. my life is painful enough not to
have to see what could possibly be done elsewhere.

Yeah, I am pi@*ed, Going to a conference isn't good enough any
more. That's like getting cancer and having some one TELL you
about Chemotherapy, but oh by the way it works really well but
you can't have it.

Oh, Why I can't I have it, because our goverment gives you a
choice and options in treatment.

I honestly think that if we subtitute the neurological disorder of
Autism with Diabetes, or Heart Disease, or Cancer, as a
community we would set our hair on fire. And yet here we have
our children.

What's the point of this rant. Get angry, get excited, I know it's
hard to be politically active while you are running your program
for your kid or kids. It's a lot to ask. Get to a FEAT meeting, go
and get a petition from canadaautism.com. Just get plain
Pi@#ed off, and do something. We need to make LAWS to protect
the most vulnerable in our society, OUR CHILDREN.

Regular folks have NO IDEA of what our families have sacrificed
so that our children would have the proper, science-based
intervention. Well, now is the time.

And for you folks with kids 6 and under. As sure as the sun
rises, that child WILL be 7, then what ?

As for me. Confernces are academic. Our family life is real. We
will as before carry on the good fight.

For all of you fighting the good fight

We shall over come. We have no choice

Dave
Mr. P's Dad

[David Chan]

Dear Terry, Michelle, and Jenny:

I felt great empathy when reading about Terry's experience with
her son and applying to have him attend a Christian school
which has obviously served other kids with autism well in the
past. It must be some relief and solace to you, Terry, that your
son is welcome in his current public school situation.

Let's face it, the problem has nothing to do with individual
families, their autistic children, or for that matter, with this
particular school in question. The real problem here is that the
public school system has failed miserably to meet the needs of
many, many kids with autism, forcing many parents to explore
the under-resourced world of independent schools. Michelle is
absolutely right–each independent school is limited in its
capacity to serve kids on the spectrum. Needless to say, this is
small consolation when it's YOUR child they're saying no to.
Terry, it sounds as though the entire scenario was not handled
with much delicacy, which is very regrettable. My guess is that a
well-meaning but uninformed person made a generous promise
to you that the school administrators were not able to deliver
on., Again, this is small consolation. However, if independent
schools were adequately funded, the outcome in this situation
may have been much more positive.

What's even more deplorable is that a significant chunk of our
tax dollar is funding schools that have let out children down.
How ironic that many of our kids are doing better in the private
system that receives only half the funding of the public system.
The only way this is going to change is to enact much stronger
legislation to safeguard our children's needs being met in ANY
school they choose to attend. In short, the powers that be have
to be scared into doing right by our children.

I, for one, would give my eye teeth to be able to bypass funding
the public system, and pour my tax dollars into the independent
school my son attends, where he has done amazingly well.

Ladies, don't let this issue divide you– the problem is endemic
in our educational system.

An opinion from one who's been there. . .

Julia
Mr. P's mom

[David Chan]

What does Mr. P and William Jefferson Clinton have in common ?

They both play the Alto Sax

Can't believe it, He's playing along with the CD that comes with
the music book, and it sounds like a song.

Dave
Mr. P's Dad

P.S. In the summer, I guess it would be July, he couldn't even
make a sound out of the sax, and what sound it did make, well,
let's say, there were a lot of amourous moose around our house

Keep up the hard work everyone…

[Author]

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