update on Allie

[peglem]

Her Lamictal was increased last month and, though it has kinda temporarily messed up her sleep schedule (that seems to be improving with time), we've been seeing some nice things:
Transitions at school have improved greatly. I didn't tell her teacher about the med increase, so I know its not just a caregiver placebo effect.

Seeing more personality and actually wanting to try things. She has switched from always demanding we draw things for her to sometimes just getting paper and drawing on her own. She always draws the same thing, a head with legs and feet (looks like a circle with 2 lowercase b's on the bottom). I'm gonna try to extend this to her doing her part and me adding some details, so its a joint effort. Also, singing songs w/ her doing her part- I stop and she signs her part.

Yesterday she was tired when she got home from school (late night the night before) and layed down on the couch, starting to fall asleep. I told her no sleeping 'til 9:00. She smiled and sat up- but then pretended to be going to sleep again. I repeated my line- she started laughing. Then she took the pillow from the couch and pretended to sleep on the floor- everytime I told her no sleep until 9:00, she laughed and moved somewhere else to fall asleep. It was a running joke all evening.

We also took her to the dollar store last night- she wanted balloons (the helium mylar kind). She shopped so well and was willing to move toward the back of the store to look at flashlights. At one point, she took the little basket from me to carry it herself and selected a few more items, placing them in the basket for purchase. It was very crowded and there were long lines at the checkout, but she waited so nicely and communicated with us and the clerk on balloon selection when it was our turn at the checkout. She was safe and careful in the parking lot as well.

She just really is so much more cooperative. Last year, we had a lot of trouble with her removing light bulbs from the Christmas tree and mouthing the lights on the tree as well. She went to do that a few days ago. I told her that she couldn't do that because its not safe and, wonder of wonders, she hasn't done it since.

We'll be starting RDI in January-Just the mini, introductory course. We were turned down for the grant I applied for- Oh, well. We're going to go out of pocket for this.:( The nice thing though, is the consultant wants us to film our sessions. I'll share them with Supernanny, who is eager to learn more. We may not be able to afford the full RDI services- this mini course does not include the 3 day eval. Its a start though, so I'm feeling positive about that.

The strep has been under control for awhile, I'm contemplating discontinuing the prophylactic zith- scary proposition, but I'll need to try one of these days. I'm seeing almost no difference between her onzith and offzith days, so that's a good indication that we've got the strep licked. I'm really thinking it was a biofilm problem.

So, that's about it, though I'll bet I forgot something.

[milivica]

When ever (for instance) drawing with Allie, remember to first have ROLES (in your mind), which leads to a pattern. That then leads to the co-regulation or 'flow' (non-prompted of course). Then you can add as much variation as she can succeed at adjusting to, to coordinate with YOU which is synchronized variation. Then add to this the comparing and contrasting of your ideas, (which is collaboration). That's the 'verbiage' of the pattern to follow. Roles, pattern, co-regulation, variation, synchronized variation, collaboration. Check with the consultant you'll be working with, but that should be right.

Watch two NT little kids playing together, at mcdonalds or probably even youtube. You'll see this pattern over and over and over. It'll help you greatly in trying to repeat the pattern in virtually all situations, with Allie. Allie will learn it unconsciously, you'll have to be conscious about it though (that's the very HARD part for all parents, me too, big time).

I can't tell you how incredibly happy I am that you'll be starting RDI.

[peglem]

Mostly we've just been working on ways to get Allie to attend to us instead of just using us as tools. That's emerging-mostly when we remember and manage to keep our mouths shut, so she'll look to us for a response. We've really struggled with just engaging her- that's getting better. I'm really looking foward to the guidance of a consultant.

[milivica]

Just that alone, is very very very good. Sometimes parents cannot get around the idea that 'communication' will improve with less talking. I've always noticed how well you latch onto the concepts in RDI. Referencing was probably the only thing in RDI that didn't confuse the daylights out of me. Vince took to referencing like a duck to water, when I remembered to shut up. It was as if all those years, his brain was just waiting for me to sort of 'usher' in the next step for him.

The pattern I posted above...Roles, pattern, co-regulation, etc... is something you can do right off the bat IF you know what you're doing. I certainly could not, but our consultant does it right away.

For instance, you could do that pattern with something as trivial as flicking a balled up piece of paper across the table. See?

[peglem]

Well, if you think about it, when that stuff develops naturally in infants- they don't understand words (much) yet, so they rely on the nonverbal, even to learn words. So, it makes sense to avoid words to develop this...but, wow, sure is tough to not use them.

[Kristen (ColeysMom)]

Pegs, this is such a great update! Like I need to tell you that...I can't even express how good I felt reading it...amazing! I just want to squish you both! The sleepy-head joke is the best! Made my day!!!!!!:D

WTG Allie!!!!!!!

I wouldn't even know where to begin trying to be quiet...that sounds ridiculous I'm sure...but I'm just a blabber mouth...I should try to use less words with Coley too! It's just crazy how little things can have such an impact!

I wouldn't know from a psych perspective what is the right approach with the drawing...but from my experience I noticed that Coley had a sort of 'progressive' approach to drawing people that reflected his ASD in a REALLY obvious way.

He started much like you described Allie's person. Soon after came arms...then maybe a hat or a tie or something like that...then something the person may have been doing, like a bike or a swing or a tree or a friend...something next to it...it wasn't until more recently (and really recently) that the person got a face. And the mouth was the very last detail to emerge.

In the beginning I used to say something like: "hey can this guy see?" or something to that effect and the detail would get added...but left alone it was never done.

So I can't help but wonder if when you interact like this whether you could have an impact on her 'perspective' shall we say...by focusing in on the eyes and the face, sorta emphasizing it's importance or something...I wonder if it would have any impact on her referencing or eye contact???? Or would it cause confusion instead??? Of course that's assuming she'd follow a similar pattern that Coley did left to her own...who knows maybe she'd go to the face next anyway...

Well, back to the point...

http://smileys.smileycentral.com/cat/23/23_30_125.gif

Thanks so much for sharing this AWESOME update!!!!!!!

:D MERRY MERRY MERRY Christmas!!!!! :D

[peglem]

Well, when we draw for her- the details go in at her request. Everything has at least eyes and legs. So, she requests say...a carebear. I draw the basic shape- she points to her eyes...I add, she points to her nose, I add - but when its nonverbal, I'll point to the same item on myself. She looks, then confirms by signing yes that its what she wants. I'll vary it sometimes. Say she requests eyes- I'll point to my mouth and wait for confirm. She acknowledges by pointing to her mouth and I nod yes to show I understand. I'm a bit concerned (and have no idea what this means) that she requests legs/feet 1st and then a shirt. She will not vary from this order- so the legs get attached to the head, then the shirt gets drawn on top. But, she does not request hands until the shirt has been drawn w/ sleeves for the hands to come out of. Also, when you draw, say, a duck, she'll request a shirt...but the legs aren't attached to the head, so where do you put the shirt and still have it make sense? At least she doesn't ask for hands on a duck.

So, what I'm planning on trying (I'm going to wait a bit to give her more experimentation time on her own drawing) is me requesting the "details and her drawing them in...so we'll kinda be reversing our roles.

[Pamster]

Wow that's amazing stuff Peg! I am really glad the strep is under control and that the increase in lamictal is helping so much. I have to say it's been a good drug for contorlling Jackie's seizures and I think it helps with his mood as well. Thanks for posting! It's good to see good things happening. :D

[peglem]

Wow that's amazing stuff Peg! I am really glad the strep is under control and that the increase in lamictal is helping so much. I have to say it's been a good drug for contorlling Jackie's seizures and I think it helps with his mood as well. Thanks for posting! It's good to see good things happening. :D

I didn't know that Jackie was on Lamictal, but its very nice to know that its working well for somebody else. I think my reluctance to increase it was because I've heard from so many people that had problems with it. I have a psych now who I do trust, but nobody knows much about what will or won't work for our kids.

[Pamster]

You're so right about that Peg, it's so hard to predict the outcome of a given drug. I know Jackie has paradoxical reactions to certain drugs and it's frustrating trying to find what will work out of the variety of drugs in a given class. He's had bad reactions to atypical antipsychotics and anti-seizure meds and stimulants. It's really hard to handle it when one of those paradoxical reactions is happening because he gets wicked hyper and aggressive. I am glad you have a psych you trust, that really makes life much easier. :)

[Isabelle]

what a pleasure, peg, this is absolutely great! let's wish for allie continue improvement and that at the end she will be drug-free for the rest of her life.....happy times for peg, again....:D

[Kristen (ColeysMom)]

Ok, I'm dying for an update!

I know it's only 1/13, but what's going on????

[peglem]

She's mostly just doing the same. We did start the RDI intro course last Wednesday- but it just started with teaching us about what RDI is and is not. We were supposed to meet today for an observation of us doing some activities with Allie but she woke up way early this morning and has been throwing up alot...so we'll have to reschedule. That explains some unpleasant episodes last night! Anyway, though the puke is yucky to deal with (she's getting better at using the trash can for this!), for some reason she gets a bit lethargic when she's got a stomach bug and I really appreciate that! Any other illness seems to give her the hypers. I'm consoling myself with the fact that this is just a normal childhood illness.

[peglem]

EEEEEWWWWW! Now she's got diarhea too. Makes me want to throw up!

[RathyKay]

(((Hugs))) Sounds like something is going around. (Katie, on Child Neuro has a diarrhea / vomiting bug.) If I catch it, you're in trouble.:D

[Kristen (ColeysMom)]

Awwww...poor you, and poor Allie!!!:(

Hope she's feeling better soon! And that it doesn't spread!!!!!

I'd say give her a hug for me, but I don't want it either! :p

In my thoughts!!!!!

Re: RDI...I'm SO on pins & needles for you guys...I have such good feelings about it...and am praying for the absolute best experiences with it, for all of you!!!!!! I so can't even pry you guys out of my thoughts on this!!!!! Sending non-stop, continuous positive vibes your way!!!

KJ

[peglem]

Y'know, once I gave her an antidiarheal tablet, she was fine. We fed her light the rest of the day. She got up and went to school the next day. Must have been something she ate.

[Kristen (ColeysMom)]

phew! Glad she's better! :D

[Isabelle]

good to hear that she got well fast...:):)