[Maureen St. Cyr]

Hi Elaine:

I am rather surprised that the list of providers is being
updated every week — one wouldn't imagine that the
number of qualified providers would change so often.
However, that is not really the relevant issue — your
post seems to infer that the Autism Society is compiling
the list. It is my understanding that ASBC is merely
distributing a list which has been supplied to them by
the government. In any case, either way, I would not
assume *anything* about the qualifications of anyone
on it. Your safest bet is to think of this list as a page from
the phone book — you need to personally verify the
qualifications and abilities of anyone on it before you
entrust the health of a family member to them.

Avery
Ariel's Dad

[Maureen St. Cyr]

Hi Norrah:

Thanks for the kind words….er, I think ;-)

One thing I want to remind you about, though it probably needs no reminding:

As I read the news out of Ontario, I always have a strangely uncomfortable mixed feeling of joy and dread — joy that you and your group are doing such a great job fighting for the rights of "our kids" in Ontario, but dread at the fact that some of it just has that unmistakable and ugly feeling of deja vu. In the last years of NDP dictatorship over British Columbia, the opposition Liberals went to great lengths to support our cause. Many of us had great hope that their indefatigable fervor in our cause meant a Liberal victory at the polls would also mean victory for the rights of our children. We all know now that was not to be the case. In opposition they were outraged about the government appeal of our triumph in BC Supreme Court. In government, they continue the appeal most vigorously. In opposition, member after member stood up and went on record demanding medically necessary Lovaas ABA treatment for our children, promising to never cease fighting until it was done. In government, they continue to throw money at discredited so-called "interventions" foisted on desperate parents by the same tired old friends of the NDP in the "autism industry" — that is, when they aren't simply saying "we can't afford it" the same way the NDP did for years. Please be very careful putting too much stock in Ontario opposition NDP members giving you support and promises now — I seem to remember Ontario had an NDP government for a while and I don't remember them jumping to help our children then. I dearly hope I'm wrong, but it's better to be vigilant and prepared and not too overly optimistic.

I wish you all the best and speedy victory for our kids everywhere…

Avery

[Maureen St. Cyr]

David – you should collect these and publish a book of essays — they always make me grin. Thank you my friend.

[Maureen St. Cyr]

With regard to vaccines, I believe the jury is still out on all counts, except one — as Erik pointed out, "mercury bad." This is true regardless of whether one's child has autism or not. In fact, from what I've read, this new lawsuit is not based on "vaccines caused my child's autism" — it seems to be based on "the mercury in vaccines caused my child's condition," with one of the conditions being autism.

For those who are not necessarily up on this, the problem is that mercury has been used as a preservative for vaccines for decades. It is not a part of the vaccine — just something to extend the shelf life of the doses. Drug companies were loath to stop using it because it means finding something else that is acceptable as a preservative, or having the vaccines go bad quicker, which means lower profits for the drug companies. Unfortunately, with the proliferation of vaccines over the decades, kids (ours and everyone else's) ended up getting a lot more mercury in their systems at a very early age, since all the vaccines had it. Add them all up and you have children getting accumulated mercury exposure in excess of even the government regulations, let alone common sense safety.

As for the vaccine controversy, DPT has been around for a long long time — we probably all had it as children (I certainly did). What was not around when we were children was MMR and two or three of the others which are either routine now or becoming so. There are some who believe this barrage of vaccinations can cause defects in the brand-new immune systems of children, ours in particular. Part of this has to do with measles vaccine bacteria turning up in children's intestinal tracts long after they should be gone gone gone. Does this mean MMR causes autism? The jury is still out. Maybe MMR causes the digestive issues many of our kids have because something about their autism makes them also susceptible to measles bacteria, even in the weakened vaccine state. There is some theory that autism is an autoimmune disorder, in which case anything which targets, affects, or otherwise impinges on the immune system could have adverse effects.

So Erik, yes, some vaccines are good — even great. Certainly no one wants to be beset by polio epidemics ever again. Now measles and mumps may be a different matter — I had both as a child, along with chicken pox and German measles (the 'R' in "MMR" is rubella, aka German measles). So did everyone in my 2.5 children/house baby-boom neighborhood. Not one child in my 1000-plus school ever had serious complications from measles or chicken pox or mumps. I'm not saying it's not possible. I am saying that one day, we may realize that the cure for the small possibility of measles complications may be much worse. If the chance of measles complication turns out to be much smaller than the chance of autism being caused, exacerbated, or contributed to by the MMR vaccine with or without mercury contamination, then you do the math, make your decision and take your chances.

Bottom line — if I knew then what I even suspect now, I would never have let that GP stick that MMR needle in either of my two children. But that's hindsight, and hindsight is always 20/20.

[Maureen St. Cyr]

1) I probably know as much about ABA as anyone on this list and I would never presume to offer programming advice to anyone. It would be irresponsible of me even if I knew the child. To offer advice as a non-professional in a vacuum without knowing the child is irresponsible in the extreme. And no, I will not sugar-coat that for anyone.

2) If your consultant's programming isn't working, tell them that and ask for changes. If your consultant isn't available, get another one who will be. If your chemotherapy isn't working, you don't start prescribing your own alternatives.

3) The place to discuss programming for a child is in that child's team meetings with the people who know the child and under the supervision of a qualified Lovaas-ABA consultant, not on a web site, or at coffee with well meaning friends or at a FEAT meeting or anywhere else. It is irrelevant whether well-meaning but ill-advised advice has helped in the past. Next time it may hurt, big time. You want to risk your child's progress, or worse? Go right ahead, it's a free country, but I will not take that chance.

4) My words are too harsh? Fine. This will be the end of them. I wish you all well. Goodbye.

[Maureen St. Cyr]

>Re: I am posting this on behalf of a team I am a member of…

With all due respect, it is not the place of therapists on a proper Lovaas-ABA team to be looking for suggestions from other parents on programming of any kind, let alone programming around aggressive behavior. If the consultant has put in programming, it is your place to carry it out, period. If you have questions or concerns about the program, you take them up in your team with the parents and the consultant, not with a bunch of strangers on a mailing list who know neither you nor the child. There is no magic about posting anonymously that gives you the right to step out of line on this, and whoever you are, I suggest you NEVER do it again.

If you think I am being rather forceful about this, consider the following analogy:

You are a nurse working in a hospital on a complicated case involving a patient with a serious medical problem. The doctor in charge of the case has given you instructions for the patient's care. Instead of following the instructions, or bringing your concerns up with the doctor, you have called a bunch of friends who have some knowledge but no medical credentials or training, given them private information about the patient, and then asked them for medical advice.

If you were a nurse, you would be in line for severe disciplinary action. As an ABA therapist, you have the same ethical code of conduct. Don't breach it again.

[Maureen St. Cyr]

Ned, first of all, none of us up here are going to have the final word on Microsoft practices, and you're really better off talking to them about it if you're serious about going to work for them, or at least contact FEAT of Washington and get some info from someone who's actually down there (http://www.featwa.org/).

That said, here's what I know – although please don't take it as gospel, it's just what I've read and heard from others:

1) Microsoft doesn't cover ABA — Microsoft's medical plan covers it. The company pays the premiums, I believe, but it's all tied in to the private US medical system. So what's covered will be listed in their plan, which you should be able to get a copy of if they're offering you a job. I suspect you will have an uphill battle to get treatment covered if your family is still living in Canada, but you never know until you ask. Just be sure to read all the fine print if you go that far.

2) Canada and the US have a tax treaty which says that citizens of our two countries only pay taxes in one of the two. In other words, if you're American and working in Canada or vice-versa, you don't pay twice. So logically, you wouldn't pay both taxes. However, this system is meant to cover people who are actually living in the country they work in. I'm not sure what would happen if you were doing Monday to Friday in Redmond and weekends up here. I'm guessing you'd pay taxes in the States, and then declare that on your Canadian return…but that's a guess. You really need to talk to an accountant, or phone CCRA and see what they say. In all likelihood, if you work in Redmond, the IRS will extract their pound of flesh on your paychecks.
Good luck…

Avery

[Maureen St. Cyr]

Ow…Dave…please…I think you and Cory & Gary are saying the same thing, although you're a little more vociferous. And I really don't think we want to bring other government policy into our debates, do we? The point is not how much the government spends on anything else. The point isn't even how much they spend on their little friends who pass themselves off as "service providers". The point is our children have their constitutionally guaranteed right to equality under the statutes of the land, including the right to proper, bonafide medical care. I'd like to suggest we all keep focused on the issues that matter. The last thing we want to do is have anyone claiming that we want to take money away from other causes to support our own. We do not. And whether we agree or disagree with those causes is immaterial.

Personally, I find it rather ironic — as well as frustrating, sad, and ridiculous in the extreme — that the Liberals are hell-bound to keep the promises that mean NOTHING but cost lots of money, and they're just as determined to violate the promises to our children which will save the province millions if not billions of dollars in heavy duty "care" for our kids which is unnecessary if they're properly, scientifically, medically treated. I have no idea what they can possibly be thinking…but we have them on record and we will hold them to their promises…no matter how long it takes.

A lot of us are frustrated with the glacial pace of getting justice for our children. To you all and to myself I say, patience. Those of you who know me know it's not one of my biggest virtues, but again, patience. Every week that passes, every month that passes, yes, even every year that passes, more and more evidence comes in to prove we are right, and more and more judgements come down to prove they are wrong. Sooner or later, these liars we elect are going to run out of higher courts. And finally, they will run out of votes as well. We played our part in exposing the NDP for the venal vindictive scum they were. We will, if necessary, play our parts in bringing down the Liberals next. The biggest problem with the political landscape of our beloved province, in my opinion, is that things here always seem to be so one-sided. The Socreds rule in impunity forever until finally they can't fool people anymore, and then we get the NDP. I was really hoping Gordon Campbell meant it when he stood up on election night and invited people to hold him to his promises. Well, we are taking him up on that invitation.

Patience, my friends. Our children will have their rights upheld and fulfilled, and hopefully the next generation will never have to go through the agony we did — of battling tooth and nail against the people who are obligated by law, ethics and morality to help them, but won't.

Avery
Ariel's Dad

[Maureen St. Cyr]

Mr. or Ms. Smith, as the case may be — this is what's known in the online world as a flame. I'm sure you are a very nice person in all sorts of ways and mean nothing but the best, but you will never work with my daughter, despite your claim to have "worked with many autistic children".

My first question for you would be what bonafide consultants have you worked under that would allow you to use aversives? And that's what they're called, by the way, not "adversives". You think a little pepper on the tongue is "very succesful"? How would you like a little pepper on YOUR tongue? Better yet, how would you like a half a bottle of Tabasco sauce on your tongue? One can only wonder at your idea of time out, but somehow from your gleeful suggestions to torture children with capsicum powder, I envision tied to a chair in the corner. Is this the Friends of Government school of ABA, perhaps?

Pay attention and hear me well. If I EVER caught a therapist doing what you suggest, I would fire them on the spot.

[Maureen St. Cyr]

If you're using a Braun electric, or another of the cup-shaped alternating-spin toothbrushes, you need very little toothpaste in any case, because the brush motion spins up a lather out of anything. There is very little difference in any case between one brand of toothpaste and another. So bottom line is get whatever brand your daughter likes the flavor of best. Both of mine prefer Bubble Gum flavor Crest, but YMMV. And don't worry about her swallowing it — there's nothing poisonous in toothpaste and the fluoride will do her good. Between now and the time her last permanent teeth come in (which is when you don't need fluoride anymore), you can put in a Spit program. :-)

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