[David Chan]

Who knew that Mr. P would like doing jigsaw puzzles, independently for yucks and chuckles.

Go figure, entertaining himself, but not in a stimmy way. Wow. Props to Shelley, and all the other consultants that have worked with him, and also the numerous therapist that have come and still come to our house. I think at last count we're in the 25 to 30 range.

Recreation is important, all of us have work, but what real really enjoy is recreation… so there.

One step in front of the other.

Dave
Mr. P's Dad

[David Chan]

Hi Jen,

You just reinforced my point. Lovaas treatment should not be a matter of affordability. I should be accessible to ALL.

That's why Medicare for Autism Now, and Canadians Disabilities Act would be the safeguards for these kids. It is initiatives like these that would compel the ministry to do the right thing.

I complete agree with giving this father extra support. The term support is vague. Where treatment for the kids is not. Treatment is quantifiable. If both his children received treatment , not only would the wandering behavior be addressed and perhaps improve. The whole child care dynamic changes.

As a long time ABA parent, I realize that we cannot account for every behavior that our children have, but what we have learned for a very long time is to preempt behaviors. Wander is a problem, but unless there we use a systematic way to address the behavior then, really are we doing the child and the family any favors ?

Which leads us back to the idea of universal access to treatment.

There are no easy fixes, but we have specific about what we want from the government, if it is to be believed they take their direction from us, the voters.

I wish this Dad well, and I hope that concrete step taken to facilitate him having all his children home.

There are no easy answers

fight the good fight people

Dave

Mr. P's Dad

[David Chan]

Hi all,

I will post in this section because it is primarily about treatment, but I guess in this particular instance there is some overlap into government.

I was aware of the case of the the child being taken in to custody in Abbotsford a few days ago.

i can't imagine how painful and frightening it is for that to happen. I have been aware of other case not related to Autism where children are taken in to custody, and what procedures are required for those children to return home; painful and expensive.

I think the initial reaction to the reading the article is that of sympathy for the parent, and some anger at the government. What we as a community has to think about is what happens when and if the child is returned home. We know the state of funding for 9 year olds in this province. What will be in place for this child when she is returned home. As for the family that the child is placed with in the meantime, what assurance do we have as a community that our little friend won't escape to neighbor's yard, well none really.

I can't begin to comprehend the complexities of the relationship of the custodial adults in the case and I don't for moment doubt that the children are loved and nurtured, but I think treatment is the key to all of this.

It's bad all around. In a perfect world, both his youngsters would be in treatment program base out of his home, and all will be better, not perfect, better.

As for answers, there are few, except to push for initiatives like Medicare for Autism now, and Canadian Disabilities Act, to ensure some safety for these vulnerable citizens.

As for right now, parents have to know realize that the best way to deal with these situations is not to have them happen in the first place. I know that sounds glib, and callous, but living La vida Lovaas hasn't been a picnic either. Being aware that having a kid with a disability places your family under a microscope. At least for the moment things are well at our little corner of the world called our house, but ever vigilant that it could happen to us as a family as well.

Dave
Mr. P's Dad

[David Chan]

Hi All,

you never know what the outcome is, maybe for years. I still recall having the therapist teach P how to throw a football, baseball, frisbiee. Of course HE had absolutely no interest in game play, we persisted,

Fast forward 13 years. We're at a picnic organized by his dragonboat team. There is the eating. but come time to amuse ourselves. Not a big one on small talk, he passed a football with several of his teammates. P had always been ecolalic, so we encouraged him to sing along to POPULAR songs, always age appropriate songs. In any event on of the team members brought along a guitar, as young people will to bbq's, well P recognize the song, and just sung along.

Moral of the story, when you do those seemingly pointless things like teaching to throw a ball properly, and singing along to age appropriate songs, you don't know how it all comes together. Always look at the big picture. It's not about functional levels, verbal, non verbal, it about appropriate.

listen if the kid can throw a ball and play catch, there is social acceptance. Aside from all the skills we are teaching them, isn'•••• why we do ABA in the first place.

keep up the good work, and fight the good fight.

Dave

Mr. P's Dad

[David Chan]

Dear Quynh,

It must be really difficult to have two children that are on the Autism Spectrum. I'm not sure if your younger child is on an ABA program, if so, perhaps your younger child's consultant may be a resource for you.

I am not a consultant, just a parent, so please take what I'm about write as personal opinion, so weigh it as such.

I don't really believe the teenage phase that does not require some kind of attention. There has to be some intervention whether it's ABA, counselling, something needs to get done as I am really not comfortable with things resolving themselves. I think that it's not a bad idea to get back to first principles, so you have to specific about what behavior changes you want to take place. I think the more specific you are about what you would like his behavior to be, the easier its going to be sort out the issues.

Don't panic, one step at a time.

All the best

Dave,

Mr. P's Dad

[David Chan]

Let me say first that I no longer have a child in the school system, but I have spoken to many, and attended meetings with parents who have children in the system.

When you have a child that is not factory as they say, you will have to advocate. We have a typical child in high school,and the degree of interaction with her school/teachers are minimal, that's because school is set up in a way, that really they impart information,and your kid takes it in and process it,and away you go.

I'd have to concur with what Ducky has to say about the relationship to the school to a point. No you don't go in with guns blazing, because it isn't civil. It is quite reasonable to say that 1000 hours is quite an arbitrary, but having said that in order for some kind of quantitative measure of work. Again it could be 1000 hours really crappy technique, who's to say.

As I see it the real bugaboo is continuity. Here's a kid that may be thriving in the home program, and is starting in school. The key to success here is the transference of skills acquired at home to the outside/school environment. How ever that works best. It seems only reasonable for a person from the home team work with the child in school, because who would be more familiar with the student than a person that is in fact working with him/her outside of school.

The 1000 hours is only a measure of understand of technique, but not the specific child. Having said that a person who's worked a 1000 hours would much more likely to be able pick up the programs from home and implement them at school, rather than a for lack of a better term lay EA.

The truth is everything is possible when the focus is on the kid. When a student/child is interfacing with school, and the world, there are other agendas at play.

There is the question of territory, who really is in charge of the school? Who is has the last say in the classroom ? What really is best for the student?

When the above questions are answered, very often, not intentionally, the student becomes the last thing in the equation.

I think what we really need to address is not 1000 hours, or advocacy, or lawsuits. By the time you invoke the Lawsuit thing, the battle is lost. The dynamics of the group of people working with the kid is changed,by the time you invoke the law. I don't want to do this with the kid, but we are compelled or mandated to do so, think about how motivated that worker is gonna be, whether it's a teacher, SEA, ABA SW. The focus is away from the student, and focused on the adults.

The focus should be on the making the kid successful, and how do we keep doing that? once you've got that dynamic going, then the whole picture changes. The students progress becomes this really cool project that everyone wants to be a part of.

I think that the hardest piece of the puzzle is to get all the people involved, parents,school districts, teachers, resource teachers, consultants, SEA's to be on the same page. We as a collective is there because we want to nurture and develop as much potential that the particular student has.

We really should stay focus on why do this integration business at all. It's not about WCB claims, burnouts, IEP'••••'s about taking young citizens, and teaching them that they are a valued members of our community. We do this because it is the MORALLY correct thing to do. During this process, an unintentional consequence occurs, the typical citizens in the classroom learns empathy, fortitude, perseverance. How cool is that ?

Frankly this whole business of lack of resources thing is a bit of an embarrassment. It is not about resources, and protocols, it's about WILL.

Doing the right thing for these kids, truthfully is really hard. This is where the WILL part comes in. Really hard shouldn't circumscribe what we do with them. So we give up? suspend them from school? H*ll NO. It's call fortitude. It's call sacrifice. And no, these qualities are not reserved for PARENTS, it for everyone who has contact with these kids. We work out the deal. If not in a board room, then in a court room.

Good stuff always takes hard work and patience. That's why grandma's home cooking always tastes better than Macdonald's

So stay focus, and fight the good fight

Dave,
Mr. P's Dad

[David Chan]

Very true Rox, we really did just do the bob and weave into the independent school system.

The observation that I can make about out experience is that the few layers of bureaucracy we had the deal with allowed us to implement whatever we needed to do.

The attitude was at the time, if it works, let's do it. It was very kid centric. It's not enough that P is out of high school. For every Mr. P graduating, there is STILL, a six year old getting sent home for WCB reasons.

My frustration is people. We have data, we have districts that have successful models, Why is it so hard to sell. And why oh why is it such a patch work across the province.

Things are a little better now than it was 14 years ago, but we just have to keep pushing.

in the words of Tiny Tim

God Bless us, everyone.

Dave
Mr. P's Dad

[David Chan]

First let me say that I did a Captain Kirk with respect to school. I did a Kobyashi Maru. ( you trekkies will understand this reference) . I cheated, I just MADE it all work for Mr. P. I don't have the aggregate experience in public school that any or all of you have. We took Mr. P to Kindergarten, and Grade 1. No School in Grade 2, and Back in independent school from Grade 3 to 12.

So whatever my observations I make are based on those two short years in the public system. I'm sure that in the years since, many policies have been put in place to make our children's life better, but that said, my kid was almost out of Elementary school when Hewko commenced.

Rules and policies are great, it's people I don't trust. I have said many many times, the first casualty of the Autism Wars is innocence. I was so wounded by my school experience that having rules in place doesn't make me feel any better about our children's future in the public school system.

Implementation is done on the ground. Please don't think I'm being an apologist for the school system, I'm not. For every child's parent are fighting tooth and nail to get a trained aide for their kid, I don't even being to know how many kids are dropped off at school with not diagnostics, and no plan in place.

I do understand the school's situation, because they are between the devil and the deep blue sea. They can implement any thing they want, but if there is no follow-through at home, then it's all for naught. ABA families live in the opposite universe. We have plans from home, but no follow-through at school.

A late pastor of mine made this comment to me, it was about the second Vatican council, and the liturgy. In his case he was educated before the the Second Vatican council, and ordained right after it. What he said was, “Everything that was forbidden is now mandatory”. Such is the mutable nature of rules, and ABA implementation. Whether it's church canon, or school district policies, these matters will be ever changing.

Bottom line, the children need to be protected, and nurtured in school. Legal precedence is useful, but it just there to help litigation. My observation about people in general is that they don't like to be told what to do, and they will fight vigorous to defend that position.

Just look at the ABA/FEAT parents, we were told this is what's available, take it, like it, it's good for your child. Look how hard we fought. Why would the opposition to oppose us with any less zeal.

Just because you're right doesn't mean that people will do what's right. Systemic change will come, I have to believe it, or I wouldn't have spent my time an effort to make those legal changes. It's glacial. That said the fight is far from over.

By the grace of G_d we are no longer doing the school piece. But there will many more curves in the road ahead to be sure. I never pray for miraculous outcomes, just the fortitude to conitinue fighting.

Once again, I have to repeat this famous quote attributed to many people.

“The price of liberty is eternal vigilance”

Fight the good fight people.

Dave
Mr. P's Dad

[David Chan]

Just a last minute reminder, don't bring a knife to a gun fight. Get up to speed with the Tao of Advocacy

Which is to say the WAY of effective advocacy. Learn the Zen of getting it done.

Attention all parent-advocates:

The "Getting it Done" Advocacy workshop scheduled for this Saturday,
April 30th by Medicare for Autism Now! is FULLY BOOKED. We are
wait-listing people until Friday afternoon, in case of cancellations

Due to the exraordinary interest, we anticipate scheduling more
workshops in the near future both in the lower mainland and Vancouver
Island. Don't be disappointed – stay posted here and at
http://www.medicareforautismnow.org for details on future workshops and other
Medicare for Autism Now initiatives.

If you haven't already done so, please go to
http://www.medicareforautismnow.org and sign the on-line petition. While
you're there, check-out the message board to see who in this election
campaign will publicly commit to supporting legislation to include
autism treatment under Medicare. Share your own candidates'
responses…but…do so before election day!

Questions about "Getting it Done" Advocacy workshop? Future workshops?
Candidate responses? Other Medicare for Autism Now!
initiatives?….contact us at mfanow@gmail.com

We're looking forward to a great workshop – see you all this Saturday!

[David Chan]

Dear Jane,

I hope your questions are really rherotical

i am wondering if someone can help me out with a few questions about
my child's school environment:
Is it normal for a child to be excluded from their classroom for most
of the day – to do most of their lessons in the resource room? My
child also has ADHD and apparently, this is too much to handle in
addition to ASD.

There is nothing NORMAL about having the kid out of the room. The key is that you have a behaviour support plan for the kid to be included inside the classroom.
Having a kid in the resource room is a way to keep the kid out. It creates social issues for the kid as well. In my kids case he was out of the room for test writing. Having in the room was more often the rule rather than the exception.

Also, is it normal for a child to be excluded from school-wide evening
events such as Open House and Christmas concerts (i.e. not welcome to
attend)?

If it's not Academic activity, that's really not cricket at all.

Finally, is it normal for a child to be excluded from extra-curricular
events such as sporting events that occur for all other same-age
students?

Does anyone have any suggestions how to fight this battle that seems
to be the absolute opposite of inclusion?! I find it astounding to be
dealing with these kinds of issues – it's 2011 after all!!

Our son is 19 kid's been on an ABA program since 5 1/2, still have regular consults to work out the nuance stuff. We've been there. After a year of having the kid out of school in grade 2 we left the public school system, and went independent school.

So as for strategies, it's all about the art of the deal. Decide what is a deal breaker. Ask yourself this question with every school issue, is this a deal breaker, if it's not, then let it go. if it is, then dig in your heels, and fight. Long story short, you don't like what they are doing, but have your consultant come up with strategies in it's place.

Pick your battles.

Remind them of Hewko case, and reasonable accommodation. Have strategies ready for them, instead of having them come up with strategies themselves.

I hope I've been a little helpful.

All the best, BTW which school district are you in ? Maybe some one on the board may have had some dealings with them.

Don't give up, fight the good fight,

Dave,

Mr. P's Dad

[Author]

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