[David Chan]

you're more than welcome Tanja,

Three things I try to do, so I will share with you and who ever else is reading this. It's been a long time, so here it is in a nutshell

Do the work (the ABA stuff)

Don't borrow trouble.

Put one foot in front of the other.

Pretty much that is the zen of Planet Autism.

All the best

Dave
Mr. P's Dad

[David Chan]

Dear Tanja,

As most of the long time readers of this board will atest to the fact that I am hugely ESL, so please forgive me if I mix my metaphors, and dangle my participles.

I completely agree. How is a kid gonna learn if he's up all night, and hungry. I couldn't do that, why would anyone reasonable expect a child with Autism to learn feeling that way. These issues are real, present.

Although we didn't experience the picky food part, we did have the sensitive gag, and endless carb issues. The ABA programs help to slow him down, cut the food into reasonable pieces etc.
I understand the same strategies can be used to introduce new foods. He still doesn't really like novel foods, but hey he'll give it a try. The answer now is " no thanks, I'm not big on sushi". However, he will eat an endless amount of Lasagna. He just eats his share, but very fussy about putting away for snack the next day.

As for sleep. It took a while, but again, That issue was overcome using a little melatonin, and ABA, don't use melatonin any more, seems to do just fine now. Get up in the morning is still the same adolescent struggle that I have with my neuro-typical 14 year old.

Again, as I said before, this too shall pass.

All the best to you.

Dave
Mr.P's Dad

[David Chan]

Just a great big shout out to Barbara and any other long time FEAT'er out there in the cosmic ether. Thank you all for chiming in, I think that it's really helpful for the newly diagnosed families gets some comfort knowing that they don't have to re-invent the wheel.

Just think when we started, (that's a collective we) the wheel was square. (dolphins anyone ?)

Big thank you again

Dave
Mr. P's Dad

[David Chan]

Well, Tanja,

All I can say is that we've been there done that, got the t-shirt and the video.

Our son was diagnosed just when our daughter was born. So it was really yucks and chuckles trying to set up a program and have a newborn in our house.

You more or less described my son. NO impulse control, language delays… The eating was a bit better, but no feedback, so ate till he puked. It was good times all around

Fast forward 13 years continuing ABA therapy, two law suits, Auton, and Hewko, We're here.

Battered but not broken.

Kid graduated from regular high school, learning to take the bus on his own, Won't burn the house down alone at home. Can stay at home with sis for a few hours.

Moral of the story, there is light at the end of the tunnel and it's not a train. Hard work, perseverance, it's well, not awful.

So Fight the good fight, you are not alone, we've walked this road before you, and hopefully we've cleared a few of the weeds and the underbrush.

It's hard to believe right now, but at some point it does get a little better… and sometimes it sucks like a hoover. But with therapy, and some concerted effort we'd like to think that it's more good than bad.

It's so unfair to have to fight a two front war. It's not bad enough to have to help a kid that has Autism, but you gotta deal with adults that simply don't get it, or not really interested in getting it. Then again if life were fair for everyone, I'd be living in Fukushima Japan, trying on lead shorts.

So as it were, fight the good fight.

Dave
Mr. P's Dad (FEAT'er since about 1996)

[David Chan]

I get really really jade sometimes at the species.

Then people like David Marley comes along. You could have done a lot of things in your non practicing of law.

You chose to take up our little cause.

Thank you sir, nice to know once in a while there are people that will speak up and do the right thing.

[David Chan]

Dr. DeLevie has helped countless children with autism in this province. I was at a rally in Surrey when Dr. Delevie came to speak for our children. It was shortly after his own son had his accident.

He is truly an exceptional human being.

People like him make fighting the Autism wars a little more bearable.

http://www.theprovince.com/news/Physician+imports+walking+machine+help+paralyzed/4629780/story.html

[David Chan]

Shane Matthews
11:05 AM on April 15, 2011

This comment is hidden because you have chosen to ignore Shane Matthews. Show Details

@Davester: You need to either be more overtly sarcastic, or less circumspect. I can't tell if you support or oppose Smyth's column. At first you appear to criticize the BCTF, but then you appear to criticize the government. So what's the deal?

P.S. My oldest son has autism and he received $2200 a month until age 6 and now receives $500/mo. until age 18, so I'm not sure what you're getting at with autism funding, either.

Read more: http://www.theprovince.com/life/government+special+needs+problem/4619917/story.html#ixzz1JcpNiozt

Yes, people, they are out there, is as if AUTON and HEWKO NEVER happened.

Be afraid, very afraid, not to mention kinda P.O'ed

Mr. P's Dad

[David Chan]

The truth about Hewko

Truth is the Hewko decision has them dead to rights, however that said, they are playing a game of chicken and seeing who blinks.

NO district will voluntarily comply, when they are not being compelled to. The inertia is simply way too great.

They district says, yeah, we know Hewko, are you gonna make us ? Go ahead, make us, oh yeah that will require litigation, because good as Hewko is, its deals with the Abbotsford school district, so if you live any where else, let's do the dance.

What that means is that some parent is going to have to go to a lawyer's office on their nickel, and start the music. Believe me, the school district has a much bigger war chest that most moms and dads.

So there it is. School districts will always call your bluff because they know the resources are gonna be lacking.

It just make me sad to see after all these years, the more things change, the more they stay the same.

But always remember, as disgusted as I sound, there is an old say that goes, never kick a man when he's down, he might get up.

Fight the good fight people

Mr. P's Dad

P.S. for some good directions on fighting the good fight talk to my Jean Lewis about that. She's got the advocacy workshop a the end of the month in Burnaby. She tell you that winning Hewko is just winning the battle, and Autism wars, they are still on.

[David Chan]

Chutzpah (pronounced /hoots-pah) is the quality of audacity, for good or for bad. The word derives from the Hebrew word , meaning "insolence", "audacity", and "impertinence." The modern English usage of the word has taken on a broader meaning, having been popularized through vernacular use in film, literature, and television. The word has also been able to be interpreted as meaning the amount of spunk or ability that an individual has.

When it comes to advocating for your kid, the bureaucracy is counting on you not to have any of the above.

Just having the Chutzpah isn't enough. You need to act in a systematic, dispassionate way to get what you want. This is where Jean Lewis comes in.

Advocacy 101

“It is not enough to be compassionate. You must act.”

As the parent of a special needs child, you must represent your child’s interests at school, in the community, everywhere. You cannot leave this job to others!

Advocacy is not a complex or mysterious process. It requires clarity, focus and persistence. It also requires certain skills:

This workshop will teach you how to:

· Gather facts, organize information, get ready

· Understand the Rules of the Game

· Plan and prepare for success

· Document, document, document

· Ask the right questions…listen to the answers

· Identify problems and propose solutions

· Drive the process

Advocacy at School

“A good education is the next best thing to a pushy mother.” Charles Schulz

This workshop will teach you how to:

· Become your child’s case manager

· Understand your school district’s Rules of the Game…who are the players and decision makers?

· Overcome objections and pitfalls

· Design an effective IEP

· Create effective paper trails, prepare documentation and letters

· Prepare for and manage school meetings

· Understand and use the Hewko decision

Autism treatment funding – securing its

future:

The landmark Auton decision is the only reason any autism funding exists today. This funding is in jeopardy because there is no statute law to protect it. The decision to continue funding or not can be made on a whim by provincial politicians.

· Learn the history of the fight to have medically necessary autism treatment universally accessible and covered by Medicare.

· Learn why we need a Canadians with Disabilites Act and an Individuals with Disabilities Education Act.

· Learn about recent and future initiatives to enshrine autism treatment under Medicare

· Learn why your children need you to get involved

We believe people learn best by “doing” rather than watching – so – be prepared to participate and receive on-the-job coaching. We promise you have never had this much fun in the school principal’s office. Several “guest players” will help us create some of the most common and troubling “school scenarios” for us to practice our newly-acquired advocacy skills.

Register today – don’t miss out, limited spaces available.

Saturday, April 30th _ 8:30 am to 3:30 pm

Burnaby Heritage Village Carousel Activity Room

6501 Deer Lake Avenue, Burnaby BC

$119.00 per person/$189.00 per couple – lunch included

*All proceeds will go to Medicare for Autism Now’s advocacy initiatives

To register: Email: mfanow@gmail.com or call 604-290-5737

All the best people.

Mr. P's Dad

[David Chan]

Just finished a consult. Always feel better about the kid after one.

Its been a long road. He was 6 when he started, he's 19 now, living at home. Not perfect, but we get along, he can do some things independently, like take the bus for short distances, do some shopping at the store, have short conversations with.

Not a bad guy, and pleasant enough indeed.

Sitting and reflecting we realize that through out the years with a short period with ritalin in elementary school, grade 5 i think,( I'm sure it did more for the teacher, than for him. ) I think we disncontinued using Ritalin grade 6.

From age 12 to now 19 and bit, all the remediation has been and continue to be behavioral.

Of course remediation today looks nothing like when he was 5, but still, drug free. Pretty cool. And please, P's mum is a pharmacist, we understand that pharmaceuticals when used properly can remediate all manner of conditions. Pharmaceuticals are not evil.

I understand that autism is spectral, every kid is different, but as it were for this kid.we have been fortunate enough, that P's autism is been remediated by ABA only.

How about that.

Just an observation, not data, but I must say. very reassuring.

Still on the journey,

Mr. P's Dad

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