to Jill

[Guest guest]

Hi Jill,

Nope, not us, we were there on the 19th though. Sorry to have missed you. When did Aidan get to be such a popular name? On the torticollis board there are like 5 of them! We'll miss you again next week, we'll be there on the 3rd. You must like wednesdays, I'm a thurs person myself. Well, I'm glad you survived the casting. I'll keep my fingers crossed for you on payment! Good luck, Natashajorinsc <jorinsc@...> wrote:

Hi! Were you at CT on Wednesday the 18th around 2:00? As I walkedin the door for Ethan's casting (which went extremely well), I heardthem call for an Aidan to come back to the back for the appointment. I was so frazzled from the car ride down (it's only about 2 1/2 hoursbut we ran into alot of traffic and I was starving!) that it didn'teven occur to me that it could be you and your Aidan! Anyway, I'm glad to hear that your insurance company is going to payfor Aidan's second band. We're still trying to get BCBS of SC to payfor Ethan's first one!Jill, mom to Ethan (will get his band on July 2)

[Guest guest]

Jill

thanks for the link

I will have to check it out

Dawn

Dear Dawn,

Here's the URL of a better website about functional behavior analysis and

how to devise a behavior modification plan:

http://cecp.air.org/fba/default.htm

Hope you find it helpful!

Jill

[Guest guest]

<<<, It sounds as if you are cobbling together a program that

will give him almost everything he needs!

Congratulations!>

thanks, Jill,I am trying hard.... today we had a huge meetnig atschool, and we

decided to give him more hours at the SPed class. they want to try it because he

still finds it hard sometimes to get into the regular class. I wasn't going to

agree, because i think that if they guide the personal aide properly, she could

help him wiht the " start " and once he starts he can continue studying pretty

well. but then I thought this persoanl aide is really not the smartest or

gratest and maybe he will benefit more from being int eh sped class a little

more where teh teacher is superb.

I just hope he won';t mind more hours there.

F

[Guest guest]

<<<< for the most part he doesn't seem

to examine his feelings, he just feels them and acts on them.>

Jill. M;s " introspection " is very tricky. I don't think he is capable of

examining " his feelings. he is just very precise in describing them. and

he has a somewhat " old wise " way of looking at things. but I don't think it

means he really understands it.

<<<<< What Owen was doing was bolting from the classroom whenever a teacher

did something that upset him.>

M does that.

The behavioural plan you described is the same as they have tried with M,

but it succeeds for only a short time. and he only has the personal

assistant for about 15 hours a week. I think part of his succees fading is

that he can't accept when things are ok. becasue when things are ok,

expectations from him usually rise, and that puts him in more pressure....

<<<<I wonder if the subjects M is studying are challenging enough for him.>

if he can finish his science test in 10 minutes and get 100, and his grammar

test in even less time and get such a high grade without having spent more

than minutes in class, then obviously not.

he was once considered for the gifted class, but he can't handle it

emotionally.

<<<Whatever you decide to do, know that we are thinking of you and praying

for

the best.>

thank you, jill!

<<< M is lucky to have you for a mom.>>>>

right now he does not feel that way about me... :-(

<<<< Even if you feel " ineffective, " I don't think any one of us could do a

better job than you.<<

hugs to you too and thank you !

F

[Guest guest]

What strikes me, after reading your post a couple of times, is a lack of

structure to M's day. If his teachers don't know who his head teacher is, how

is M to know? And it doesn't sound like there is a particular structure to his

day, either. It's funny. When and I went to back to school night at his

old school, we were horrified by 's math teacher. He was one of the most

anal teachers we'd ever seen. Kids have to be in their seats by 10:02, not

10:03, they have to write their headers just so, and they speak when spoken

to, etc. BUT, there was NEVER any teasing in that class, and the rules were

crystal clear. liked the guy. I also think that things started to fall

apart for at the old school when they kept changing his schedule on him.

There were other things too, but that's what started it. Anyway, it struck me

that M's day is missing a certain amount of predictability. He should certainly

know who his main classroom teacher is. That gives a child a sense of belonging

somewhere.

Liz

Uplift - The Beauty of Imagination in Healing wrote:

>

>

> <<<<<<I have been reading the digest too fast lately and missed your post

> about

> giving an AS lecture at school. Could you tell me when you posted it?>>

>

> follows below:

>

> Just came back from a lecture at school given by two members of the AS org

> here - my initiative.

> I came out feeling something was missing.

> the lecture was ok, but then the questions started from the teachers, and

> mostly they were negative : but what to do when the child has a violent

> outburst? what if he does not comply? " etc. I did expect this type of

> questions to come up but I wish someone there had also asked ; " how do I

> make it easier on him? how can I make him get more interested in studying

> with the class? " ok, I dream Utopia.........

> I was surprised at some of the teachers, that is, teachers I did not know

> liked him but seemed to like AND understand him better than others. I saw a

> teacher who really can't stand his sight to suddenly show some glimps of

> understanding and even smiling at the thought of him (I think she suddenly

> understood something she saw in class and realized it was actually cute

> rather than defying, for the first time), I also saw the English teacher who

> hates his guts (but sometimes it seems to me and other parents tahat she

> hates all kids...) not listening to even one word said.

> I saw the principal actually buffering questions that were going too far

> and sort of keeping the tone down, but also asking " can you say that AS

> means always violent outburst ? " to which of course the answer was no, and I

> know where she is going from here: if they can't get him out of school on

> the AS grounds , they will just claim he is violent..... that unfortunately

> will send him out to a behavioural school with speed (don't worry, I will

> fight it like hell).

> overall, I don't know yet what this lecture has done for my son. The people

> who lectured felt a) that the overall atmosphere is NOT accepting, and

> that the lecture CAN help in how they perceive him. I will see where it goes

> from here.

> gladly, they will be on vacation soon, and will have time to think it over

> and muster some positive feelings about him or totally forget......

> ******what really shocked me was this: if you recall at the beginning of the

> year they convinced us to put him in the sped class " officially " only to get

> him the resources he needed for help. he was supposed to be in the regular

> class and go to the sped class as much as he needed. I was against it

> claiming he would be too confused and wouldn't know where he belongs, ending

> up in feeling as though he does not belong anywhere.

> I kept telling them since then that he IS confused and that this is part of

> the cuase of his difficulties. he says it himself : " I don't know where I

> belong. if I am supposed to be a regular student in the regular class , why

> am I in the sped class, and who is my teacher " . at the end of the lecture as

> more and more questions came up, the people who lectured asked who was his

> head teacher/ he has two: the sped head teacher and the regular class' head

> teacher and they are supposed to work together, while the sped head teacher

> leads the plan. the sped head teacher had left already (she apologized

> ahead of time, she had another meeting, which by me was ok) , and it turned

> out most teachers had no idea who his head teacher was. finally someone said

> : " {he is in the sped class and she left " . two others said: " no, his head

> teacher is here! " pointing to the regular class' head teacher. who

> responded: " me? I am not his head teacher and he is not my student! he is

> not officially listed in my class! "

> there!!! the problem in a nutshell! if tehy are confused as to where he

> belongs, how can he be clear about it???? how can he NOT feel anxiety there?

> how can he not run like a little mouse from one class to teh other never

> quite fitting in to any ??

> now, I don't know why she said that. she likes him (although she is honest

> enought to tell me that there are moments she is ready to pluck his feathers

> in her words). it could be inside politics, prestige (sort of if they want

> her to deal with him they need to give *her* the lead and not to the sped

> teacher, or a general bad feeling as I know she is having tremendous

> problems with the whole class (teh chidlren are rejecting ehr - that is

> another story).

> Oveall, like I said, i came out feeling something was missed there, and the

> situation is not at all positive the way I had hoped.

> waht do you think ?

> F

>

>

[Guest guest]

Thanks very much for all the good wishes. I'm not sure what I should be asking.

I don't

know if I even have Flatback! All I know is that I'm in pain, am a Scoliosis

patient with

Harrington Rods in my late 30's. Sounds like I do, right? I guess what I want

to take away

from my appointment, besides an idea of what is causing my pain, is this: If I

possibly have

this syndrome, what should I be doing and not doing to prevent this from getting

really bad

really fast? I have no interest in surgery--that is scary. I've already had

the Harrington

procedure twice and I'm not eager to go under the knife again. I just want to

stay upright

and not hurt. Asking too much? I'd like to know! Wouldn't we all....Off to

bed. Tomorrow's

a big day. I will let you know what comes of it.

Jill

[Guest guest]

Hi Jill and welcome to the group!!!

Of course I was mad when I was diagnosed! I thought my life was going

to end - at least the eating and socializing part of it. But it

hasn't, much to my amazement.

Personally, I haven't had DF, so I can't tell you much about it. But

why continue eating gluten if you could be risking your health? Going

gf is the best thing that happened to me. I no longer suffer from

bowel issues, horrid gas, bloating beyond all belief (I honestly

looked 6 months pregnant!) I have more energy than I've had in years,

my skin is finally clearing up and hair has shine once again. I'm not

a PITA to be around anymore, either!

As for the question on testing...the best test is going gf and seeing

if you feel better. You can blood test or get a biopsy, but ultimately

if you feel better eating gluten free, why wouldn't you continue it.

As for going out to eat, I just took my nephew and my brother out to

dinner tonight. They decided they wanted Italian and to a restaurant I

had only been to once before. I told the waiter I was celiac and the

chef whipped me up a dish that was to die for. People all around me

wanted to know what it was. The manager told me they are redoing the

menu soon and will list a gf dish. He is amazed by how many people

call or come in and say they are gf.

As for getting together with friends and family, my work had a potluck

today. There were salads, curries, homemade tamales, rice noodle

soups, fried rice - and things I had never even heard of. But there

was so much I could eat. I had watermelon, salad, a corn torilla with

beans and cheese, fried rice (it was made with wf tamari) and ice

cream bars that are gf (which I brought, btw, because I'm not a good

cook). I didn't feel like I was missing anything. Honestly, after a

while, you could go to ANY restaurant and find something to eat. You

can buy mixes for pancakes, bread, muffins. Corn torillas are

lifesavers because you can fill them with lunchmeat, cheeses or even

peanut butter!

As for giving up everything you love, you don't need to! You just

might have to modify things a bit. If I didn't have celiac, I would

have never learned about rice noodle dishes, pamela's pancakes

*yummy*, dora the explorer cereal, glutino pretzels (even better than

the glutenoid stuff) or larabars.

Honestly, the best encouragement I can give is my story. Go on the GF

lifestyle and see what it does for you.

Feel free to contact me off group if I can help you with anything at all.

Carla

Chico, CA

> My name is Jill and I live in Sunnyvale. I have just been

diagnosed with dermatitis herpetiformis, which is a skin disorder

related to celiac. I have suffered from it for years, and was

misdiagnosed by doctors (they all thought it was eczema). Autoimmune

disorders run in my family though, I have a cousin with Lou Gherigs,

aunt with lupus, and another aunt who was just diagnosed with celiac

....I myself have autoimmune hypothyroidism)

>

> My husband and I had tried for 3 years to get pregnant, but had

several miscarriages. When my aunt was diagnosed with celiac, she

told me one of the symptoms was multiple miscarriages, so I began to

look into it more thoroughly. Well, last fall, I found out I was

pregnant, and during that time my symptoms subsided, so I forgot about

it. In August I gave birth to a healthy boy, but 5 days afterwards,

completely broke out in a itchy rash. I went to the dermatologist and

demanded to be tested, and sure enough, it was positive for DH.

>

> I have some questions, perhaps some of you can help me with.

> I am pretty sure, but since I have DH, does that mean I

automatically have celiac? Do I need further testing, or should I go

on the diet?

>

> Did anyone else get upset about going on this restrictive diet? I

am putting it off, because I can't imagine giving up everything I

love. Plus, I can't imagine going to parties, and family get

togethers, only to stare and salivate over food I can't have. With

kids in the picture now too, the stress of being on a specialized diet

scares me.

>

> Any encouragement you have would be great!

>

> Jill