Ok, I gotta do this...

[Kristen (ColeysMom)]

Girls, I could SOOOO get into all these awesome points here in the last couple days (minus poop threads of course)...and want to, but I haven't read one single RDI word in days.

We are trying to get a boat load of stuff done around the house, AND I'm spending way too much time tracking down the Dr for results...I feel SO torn, but I'm really ashamed of myself because I'm neglecting Coley...and just after we started making some AWESOME progress...I've got my priorities all wacked out!

So, I gotta just do this...I need to take a little break to get back on track...

I gotta get through that book, I gotta connect with school & his new teacher, I gotta get these result/next steps/appointments, and I gotta get a ton of house projects done!!!

UGH!

KJ

[milivica]

I read what you said, sounds great! But, did you mean you won't be posting for a bit?

If so, that is called a declarative in RDI.

So, when you want Coley to put his toy away, instead of saying "put your toy away" you say, "Hmmm, do you remember where this goes?" and point to the toy.

When he comes in and leaves his shoes on the floor instead of saying "you left your shoes on the floor, put them away" you say, "I hope mommy doesn't trip on these"

Instead of saying "I won't be posting for a while, or as frequently" you say, "need to take a little break to get back on track.."

Declaratives are 'hints' that seem to come naturally to nt's, and is how they communicate - which is fine if you read body language and intent and intonation. Declaratives help form those functions, to be able to read body language, and intent, and intonation. We get used to talking point blank to our kids, cause that's what they understand - rather than giving a slight hint (not a really hard one like "what smells" and expect them to know you mean "take a bath").

While your getting on track, do declaratives. You'll be surprised at how 'instructional' you are, rather than declarative I'm betting - cause that's pretty natural for moms. And it's fine, if your kid is getting gobs of practice with declaratives outside the home, with their friends.

Make sense? Good luck on your catch up! I might follow in your footsteps in a week or two, after the consultant visits, observes, and creates a report and Vincent's new school. That's when I gotta suck it up, and get my story of last year on paper and ready to send to anyone and everyone I can think of. And at last, be DONE with it. Walk away from it, I wouldn't say forgive and forget, but move on. (Grimey will be so pleased).

[Kristen (ColeysMom)]

Ok, I managed to read a ton while Coley had lunch and Audrey played...I don't feel so guilty now...and wanna talk about stuff...bounce ideas around & stuff, can we start an RDI chit-chat? Would you guys be game for that?

Right now Coley & I gotta go empty the dinning room, while Audrey sleeps. When DH gets home we'll be stripping wallpaper...hopefully I can come back before bed, otherwise maybe flash chat tomorrow am???

KJ

[Kristen (ColeysMom)]

CRAP! CRAP! CRAP!

ok, first off, Mili we must have been posting at the same time...thanks for those tips! Will do!!!

2nd, just FINALLY got off the phone with the metabolic Dr. NEGATIVE! And they can't get me into Buie...but I've got a referral to a colleauge, which IS good and his metabolic Dr plans to contact Buie anyway for a consult. SO I guess that's good...but meantime I'm sitting here PISSED that we still don't have a friggin clue!

CHRIST ALL MIGHTY ALREADY!!!!!!

UGH! UGH! UGH!

back to furniture moving...:( :( :( :(

[tgrimes]

I gotta get through that book, I gotta connect with school & his new teacher, I gotta get these result/next steps/appointments, and I gotta get a ton of house projects done!!!



KJ


Well, you didn't say which one was priority.

[Isabelle]

take a deep breath and practice some RDA, a unique technique brought by our grimey tgrimes :) :p :D

[Kristen (ColeysMom)]

UGH!

I'm feeling the guilty guilties coming on again today...

I can't sink into that...but I just want to CRY! I'm so frustrated and tired of trying to figure all this crap out!

Can someone please explain to me why my little precious baby can't eat normal food without flying to the extreme end of the autistic spectrum?!

I need to go have a but and a good cry!

[GinaMarie]

Kristen,
Forgive me because of my disability I dont remember everyones histories. Could he have food allergies that cause flareups? I've heard of kids that eat food they are allergic to even like red food dye causing rages when eaten. That is just something that came to my mind when I read your post. Sorry things are going roughly. I can relate some. I dealing with 4 boys and lots of anger problems with them and thier special needs.
Im praying for you.
HUGS to you,
Gina Marie

[Kristen (ColeysMom)]

Thanks Gina Marie!

I hope this doesn't come across grumpy...but I AM in a bad mood today, please don't take it directed at you if it does...

Coley doesn't have allergies. He hasn't been tested, but he has no allergic type signs. His diet is pretty restricted so he doesn't get any chemicals or dyes or what not.

He basically eats (organic): poultry, fish, potatoes (no skin), white rice, pasta, very little dairy, dextrose/glucose and refined grains. He cannot have whole grains as they contain fructose, nor can he have most fruit or veggies. He can have cucumbers, celery and mushrooms. There are a few other plant foods that he SHOULD be able to tolerate due to their low fructose content (avacado, rhubard, & olives) but does not tolerate them. He has zero tolerance to fructose.

He gets hyper on dairy, and seems to have metabolic issues with red meat. With dairy he won't look at me or respond to me very well. Keeping him on task is impossible. We end up chasing him around the house with a fork, because if he doesn't eat he has blood sugar issues which just creates a MUCH larger problem. All other 'tasks' basically take a back seat. Our house will look like a cyclone hit as he starts something then moves on quickly to the next (we've named this Cyclone Coley).

When he has fructose he gets obsessive, too focused/fixated, inappropriate play, and loses communication ability. If forced/pressed to he will speak so the words are still there, but it's like he has to be forced to communicate. He whines and grunts, moans and cries otherwise. He get's combative/defiant, his frustration level goes through the roof. If there is any anger or whatever it is here...but it's generally directed toward an object that he can't somehow make defy the laws of physics. It's so weird because only in this state will he want something with 1 leg to balance, or something that's had it's wheels bound to roll, or something to balance without falling when it's teatering off an edge...things like that. So he will get mad I guess that he can't make stuff do what he imagines it should be able to, so will throw things...although he's starting to stomp on stuff too now. This we call Distructo-boy.

Without fructose (which is REALLY hard) and with VERY small amounts of dairy...he looks pretty close to NT. There are a few things, eye contact needs a bit of work, he's not the most flexible guy, and his attention span is not the best...and I guess he's 4.5yo, so how much of it is an issue and how much of it is his age...perhaps even his maturity too...lord knows he's probably just got some ground to cover considering he was in a friggen fog for 3 years.

So anyhoo...I guess I just talked myself into pluggin along, so thanks for that...but I just want to know WTF! It's hard not to take the blame, or at least consider that the blame may lie on my shoulders, as one of the possiblities, ya know...and I just have my moments...for now it seems to be going away...

Gotta go get Audrey now...she helps me feel better too...

KJ

[tgrimes]

So anyhoo...I guess I just talked myself into pluggin along, so thanks for that...but I just want to know WTF! It's hard not to take the blame, or at least consider that the blame may lie on my shoulders, as one of the possiblities, ya know...and I just have my moments...for now it seems to be going away...

Gotta go get Audrey now...she helps me feel better too...

KJ

It's good when your'e just talking about things here and then you realize you really are going to keep going just fine, huh?
Don't fall into the blame trap, it's too hard in there!

[milivica]

Yeah that diet he has to follow is wicked restrictive. I thought gfcf was rough. You have major kudos from me. Did he get some fructose today or something. It's strange, but my 'mood' is off today too. Like some cumulative thing that hit. Not feeling bad, just pissy.

I hear you on the Distructo-boy thing...we called Vince the Vincenator.

[Kristen (ColeysMom)]

No, I just sunk really low when an answer didn't present itself with the testing.

Nothing has changed, and I guess that's the realization that I came to yesterday...today is no different than last week...same **** different day...

Can someone explain to me the difference betwen casien free and dairy free. I know that caisen is just one of the protiens in dairy, the other is whey...so I guess that means whey is ok to have. But how do you manage to have whey while trying to avoid caisen?

I'm just wondering, now that the test came back negative, if it's the caisen verus the l-serine.

I'm pretty sure he's ok with gluten though. I've done an elimination diet for it before and there was really no imact...plus, crikie if I take out gluten the kid will have fish, poultry, potatoes, rice & water to eat...what the hell would I send to school...dehydrated fish...LOL!

Ok, my goal is to get through a few more exercises in the RDI book, and start plowing through the other today...

KJ

[Kristen (ColeysMom)]

Alright, I had to check oprah's site first to see if answers were coming yet, and they have!

Check these out: http://www2.oprah.com/tows/pastshows/200709/tows_past_20070918_c1.jhtml?promocode=HP33

You guys I want to draw your attention to this:
#5 Besides GF/CF I also started sugar-free and yeast-free diet. No fruit or sugar.

ok, walking away from the PC now, I gotta get that reading done...

I got my appointment with the GI though 10/15...did I tell you he works with Buie!!!!!!! And the metabolic doc is going to call Buie and ask him to review Coley's chart...so, I'm pumped about that!!!!

Ok...off now...

[peglem]

Found this:

http://www2.oprah.com/tows/pastshows/200709/tows_past_20070918_c2.jhtml


I also recommend a therapy called RDI. Its like a behavior therapy but teaches the parent to become the therapist[/B]. It does great things for ALL ages of kids on the spectrum. More info at rdiconnect.com.]

Bold added by me. Jenny uses RDI.