Pegs...

[Kristen (ColeysMom)]

How are you guys doing? I'm thinking no news...but I'd love an update. How's school going for Allie so far this year? How's supernanny doing? How are her teachers doing? Do they seem to be on board? yadda yadda....

How are you?

[peglem]

How sweet of you to ask.

School is going okay-same old, same old. "transition difficulties" They have no idea how to fix this, I'm guessing, since its been a life long problem and they just keep on with the same old stategies...but I know know what they could do differently either.

Supernanny has made a huge effort to incorporate RDI into what we're doing, but we really don't know what we're doing- trying to use the RDI objectives checklist to set some objectives, but don't know how to get Allie there...

Soooo....The RDI consultant is now offering an introductory course for @ $1300, which I have finally sorta convinced my hub to do (we can't afford it really :() We should be starting that in January. The big problem is getting Allie to engage in anything...She really resists interaction and becomes upset whenever we don't do as she requests. I've applied for a grant to cover almost all the costs of 6 months of RDI consultant...we'll find out by the end of the year.

Allie's right boob has caught up to her left (in size), but no period yet. She's still on zithromax. I'm trying to decide when would be a good time to try discontinuing that. Her pediatrician says whenever we feel is a good time and he thinks puberty is a good time, body changes, maturation...Mostly I'm thinking to wait until we've got her period established and she's doing okay with it. I'd sure like to get her off of it so I can do a better job of fighting the yeast.

So that's about it...nothing too exciting.

[Kristen (ColeysMom)]

Are you frustrated? You don't sound it, but I know I'd be. Are you burnt?

Seems from here that you just need to get past the first hurdle, like if you could just get her to 'play along' ... I can see how making an investment for THAT would be hard...

I remember how frazzled I used to get with transitions. I SO wish I had some advice for you. I swear I used to DREAD them. I'm sure too that added to it for him, but how do you not?! Especially in public or mixed company or whatever.

He's not perfect with them now, but it's not generally a major crisis. Sometimes it catches us off guard, like ooops, forgot that could be a problem and we need to double back...we take it for granted...it's generally when it's a new thing...

I'm guessing supernanny doesn't have any ideas either?

Do you think talking to Allie would help, I know that sounds like a lamo suggestion, but it hit me like a ton of bricks when Dr G suggested this in our last class. Like DOY! Just giving them some options...to help cope.

Like we need to go to the market in a little while. Are you going to be upset when we need to stop, whatevering? We could take ________ along? We could have a snack first? We could________

Would you like to do any of these to help?

Or whatever makes sense to you?

I did try to prepare Coley, before, but it was always a countdown kinda thing. You know like: Coley, 10 minutes left for play time. In 5 minutes it's lunch time. Ok, it's time to clean-up now & have lunch. Ya that worked, NOT! I think it only added to his anxiety to be honest. But hat might have been my anxiety adding to his, it's really hard to know.

Holy Shnikies! 6 months...that'd be SO amazing! I hope you get it! My gut tells me that if you could just 'get rolling' you'd take off with it... Crossing everything!!!!!!!

UGH! on the puberty stuff..I gotta just stick my head in the sand, I just can't even think about it! A friend was telling me the other day that boys are interested in her girl, OY! Creeped me WAY out! For the love of god, Audrey is only 21 months. I guess I'm a bit goofy cuz of Coley too...but that aint much more of an excuse...the whole idea just gives me the willies! Sticking my fingers in my ears, "la-la-la-la"

ya know...the first thought that popped into my head on the zithromax...

When we put Coley on depakote. I fought tooth & nail to NOT put him on that stuff too, so bare that in mind. It helped, and it helped a lot. But it did create other problems too. When it came time to think about taking him off, I was terrified! I was so afraid that he could have a set back that would erase all that he had gained...I was really scared. And really the neurologist didn't have much in the way of calming my fears. Basically said it could happen. But it had to be done. The longer he was on it, the more dependant his body got.

I honestly had to be counseled much by the ped. The real issue is that we needed to figure out where we were at. I swear I held my breath for 3 straight months. We did see some blips, but that's all they were (thank god), there were some creepy kinda 'processing' things...but they passed. What did I learn, when it comes to stuff like that, if it's inevidible, it's best to just do it sooner...the longer I 'procrastonated' the more worried I got about what 'could' happen.

Absolutely I had reason to be scared, and absolutely worse things could have happened, but that was the information that we needed...in the end, I only made myself crazy trying to figure out when, and how, and all that...like a bandaid...just do it.

So, I don't know if this adds anything to your decision, but I hope somehow it helps!

Keep us posted on the grant...

[peglem]

What they're doing with transitions at school is preparing her for them- cutdown kinda stuff and using a schedule so she can see what's coming up...but this is what has been always done. She just turned 14 years old and well, I'd say she's doing slightly better than when she was 5 (but I think that's because we have the strep under control), but still if they knew what to do (or if I did) then it should be solved by now.

I'm not too scared of puberty anymore- finally got some materials on it and we have a plan for dealing with it. Not too woried about sexual abuse. Allie will not even let me put ointment on her privates, she'll really kick up a fuss if anyone tries to touch her. Little trickier helping her deal with her own sexual feelings...I think they scare her.

I'm not so frustrated with the interaction thing as burnt out, I guess. I seldom get positive reinforcement for my efforts and feel kinda defeated. everything is still so much on Allie's terms.

As far as the zith removal...I just don't want to combine the strep rages with the hormonal rages (maybe there won't be any ;)). It may be hard to tell what is causing what, y'know? For now, she's relatively stable so I don't want to mess around too much.

[Kristen (ColeysMom)]

For now, she's relatively stable so I don't want to mess around too much.

I think that's what gave me the most angst too. Like don't rock the boat. But that was exactly the same reason that the docs gave me right back...he's stable, so it's time.

Have you asked Supernanny for alternative ideas about transitions? I'm assuming you have, I'm suprised she doesn't have any NEW suggestions. Could you ask her to research some? Would she be open to that? Maybe you guys could explore some new techniques at home before suggesting some to school.

What they are doing for Allie is pretty much what we did for Coley, it didn't work for him either. They can't be unique in that. There's got to be other ways...right?

[peglem]

I think RDI should be more help with transitions than anything else- develop self regulation, learn to see from the perspective of others, ability to prioritize and trust and rely on others. Her fear mechanism is easily triggered because she has no reliable indicators for "safe and okay."

There's always the chance that changing activities will expose her to something completely NEW...OMG, how scary is that?! If she had any enjoyable social interaction, she could use other people to "feel" like its okay or at least enjoy the comfort that its all new to them too.

[Kristen (ColeysMom)]

I'm sure you've looked before and racked your brain, but I was just curious what I would find if I tried to 'dig-up' some new ideas, here's what I found, hoping there's a fresh idea for you here some where:

Social Stories,

http://www.education.tas.gov.au/school/health/disabilities/transitionplanning/youngpeople/autism

http://www.theautismlife.com/the-daily-grind/

I came across a lot of transition seminars...obviously they didn't give the meet in the anouncement, but that leads me to believe there are other approaches. I'm sure this is like any other skill, in that everybody learns differently.

Maybe, obviously this approach doesn't work for her.

I gotta try to get Audrey down, but I'll see if I can dig up anything that seems more meaningful, and specific a little later.

Maybe Mili or Aspigander will have some ideas.

edited to add...just saw you posted while I was googling...I agree RDI!!!!! But meantime... and I absolutely agree, there IS a reason for her (and all of their) reactions. I'm sure your instincts about her fears are correct too! I think that's one of the mistakes that is made, sorta not addressing the root of the behavior, rather just trying to change it...

[Kristen (ColeysMom)]

Here's another

http://www.autismnetwork.org/modules/environ/transition/index.html