Subject: Calgary Conference

Hi everyone:

Just back from the Calgary Confernce. After the 3 1/2 day event we took some time to do some sightseeing. Canada is a great place to visit--clean and the air is ever so clean, fresh and dry.

The conference itself was enlightening and we take our hats off to the organizers for the work they put into it. Attendance and participation was quite good.

We won't get into a discussion of any of the topics specifically for fear of misrepresenting the presentation made.

We became a bit lost during the first day as it was mainly directed to the clincal diagnosis and the report of some genetic work being done. Much went over our heads. As you listen to the experts you realize what a magnificent creator we have.

The session on melatonin presented results of a study being done which indicated that giving a dosage of melatonin at the right time of the day can increase a persons ability to sleep.

The session on behavior management was interesting and included approaches to take in any behavior situation whether resulting from AS or something else.

The School/Home relationship segment was presented by a parent/principal who was a strong proponent of inclusion strategies. He also made it clear that the parents are the experts on their child and are responsible for assuring that the IEP's include what they feel is needed.

The communication session was a factual report on a study which indicated the types of communications strategies being employed by angelman families etc. without any analysis or predictions.

The sensory integration subject was much more involved than we had expected from reading the comments on the maillist. Most comments on the list refer to using touching approaches to get individuals attuned to touch. The presentation given was much more involved than that.

The presentation got into a couple of sensory systems we knew nothing about: -- the PROPRIOCEPTIIVE system with receptors located in the muscles and joints. These give information to the brain about where body parts are and what they are doing.

-- the VESTIBULAR SYSTEM, whose sensors are located in the inner ear and are stimulated by movement of the head and input from other senses. Its function is to provide information about where our body is in space and whether we or the surroundings are moving. It also tells whether movement is up or down, fast, slow or angular.

When we went to school the senses taught were sight, sound, touch, taste an smell. When these or the other senses we have learned about are out of tune life becomes much more difficult and challenging. As you can imagine all of these systems must be working properly and coordinated for an individual to be well adapted to his environment. Good luck, even for those of us without AS.

The session on fundraising was most thought provoking. The agency that provides residential services to David just became independent of the local ARC in July and we have to come up with a way to assure future financial stability--cutting reliance, if you will, from the State Government. The speaker was a mega proponent of Planned Giving Programs, Endowment giving, and Corporate Partnerships. She had several suggestions that may be helpful to us.

The Back Health session was great, especially for parents with younger children which require lifting. Most of us have been given instruction in the techniques of lifting but it helps to be reminded. Basically her message came down to BEND THE KNEE and stay as close as you can to the object being lifted making sure that you have your body well balanced.

We didn't stay for the entire parent panel. We did take in the discussion on the "Submandivular Duct Translocation" i.e. relocation of the salivary gland from the front to the rear of the mouth. The presenter explained the procedure and the recovery. In their case the operation was successful and drooling has been substantially reduced.

The two days exploring downtown Calgary and Lake Louise and Banff were a much needed relief from intense listening.

This was our second conference and we recommend attendance to all parents. Not only did we learn from the various presentations, but we met some wonderful people who are walking in our shoes. And of course, last but in no way least, we got to meet some of the angels we read about.

Again, our hats are off to those that put so much effort into bringing the conference about. We are making our plans for Seattle!

Carolyn and Fred Windbeck (David 28)

Subject: Calgary Conference

Hi all,

Back from Calgary 4 days ago, I've recovered from jet lag and cleared the jungle in our backyard. (To those who attented and watched my beard develop into a "jungle" for fleas to move in, but, tactfully, didn't comment on it: I didn't bring an adapter for my electric razor, to convert 120 volts into 220 volts, nor was there such a device available in Calgary, but I finally did find a barber downtown (the only one ?) who could shave. You see, with electricity everywhere, I'm not really into it myself...haha !)

I agree with the Windbecks about the excellent job the organizers of the Conference had done, as well as about visiting Canada, Lake Louise, the quality of the air and everything. The organizers should in no way be blamed if the contents of some of the presentations didn't quite meet the expectations raised by the promising titles (though most of them did). Personally, I found Susan Wright's talk on behaviour management techniques the most interesting and thought-provoking one. My wife and I have already decided to study that resourceful lecture with an open mind.

I guess all of us went to the Conference to get just the kind of information that we needed, especially w.r.t. our own children, so it would be quite difficult to give accurate details on everything to everyone listening here. However, I'm sure that much of what we learned will come up in the context of some specific issues that will be raised later on. I was also left with the impression that no complete videotape or other material would be made available to those who didn't attend, but perhaps someone who was more involved could set the record straight.

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: Re: Calgary Conference

Marianne Mosley wrote:

Heikki,

Can you share a bit more on the behavior management session you attended -- especially if no one plan to make notes available? I'll keep in mind that these are your impressions and not necessarily comprehensive.

Hi Marianne,

Oh no ! - does anyone who was at the Conference possess a scanner with which she/he could reproduce the handout here ? I haven't even had time to assimilate the lecture myself ! And anyway, it would be a lot easier for me to discuss a specific behavioral problem.

Well, the starting point really was to take a positive approach to the fact that the consequences of behavior determine future behavior. That is, don't reinforce misbehavior by using bribes (for not doing this or that), giving a lot of attention etc. Ignore less troublesome behavior, redirect, reward good behavior and make very clear that certain, more harmful behaviors are unacceptable. Avoid punishment but use discipline which is well-understood, also by the child. Sometimes you may get angry, yell and so on, but ask yourself how you could focus your attention away from your child's behavior and how you could praise her/him. Also, involve other people who influence your child's behavior.

I think the whole approach could be summarized in the following commands: be positive, simple, pre-emptive, repetitive (persistent and patient), firm and consistent. This, admittedly, is a very brief summary, and most certainly an accurate one, and it really would have to be elaborated before it could be applied in any real-life situation. Hopefully, I have at least conveyed some of the general spirit of Susan Wright's wonderful lecture.

There are no doubt countless books written on behavioral management which anyone could consult. However, to me at least this was the first lecture I ever attended which presented a thoughtful and broad view based on a long experience which also included an AS kid.

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: Extra Educational Conf. Handouts

Hi Everyone! We are now recovering from a very successful Lower Northeast Regional Educational Conference. Thanks for the comments! It was really special. We put together a very informative 38 page, bound, handout with all the information from Dr. Calculator (tools, sample interventions, and bibliography), Inclusion information and guidelines, Parent to teacher communication tips, ACC tables about AS from ACC News, and early communication strageties for a speech therapist. We also included the I.D.E.A. legislation, and have an additional handout on accessing assistance to enforce I.D.E.A. for inculsion. We made a whole bunch of extras for the purpose of sharing with those who could not make the conference. They will be available for $7.00, including postage. Just send us a check in snail Mail (Sharon and Steve Katz, 1002 Stratford Avenue, Melrose Park, PA 19027 or call us (215) 635-3295) While being there is always better, the timing was unfortunate, although necessary for several important reasons. We would recommend other regions to have such a conference, as family sharing in like states is very important. I would also like to encourage people to discuss how education is carried out at a wider spectrum of ages, as there is much to share and prepare for. Thank you for those who came, especially from a far....especially Beth Sturr, who video taped the conference for Michigan region, and also sold her Angelman Syndrom ABC's, with Full color photos and tips. It was wonderful sharing....we almost didn't want the conference to end! ---Angel Love to All!---- Sharon and Steve