Again

June 20, 2000

I have to agree that the ideas for are all good. That said, I'll tell you

what I did with . The first thing I did (and I'm not sure how we got to

that point, I guess it just progressed) was to get him to answer yes or no.

Then it was a matter of knowing the right question to ask. I know that I

constantly put myself in his place, what would I want if I were him? It takes a

lot of detective work. I always answered him in full sentences, and asked

questions in full sentences. People ask me how I understand him (he's really

difficult to understand) and I say I just know what he means. Some days aren't

as good, as I can't make myself get on his wavelength, but some days I know from

a single word the sentence that me means. On days like that I have to force

myself to play dumb and get as long of a sentence as I can out of him. He has

come a tremendously long way in just 2 short years. We arrived in Hawaii 2 and

a half years ago with a child who barely spoke one word sentences. Now he

speaks in 4-7 word sentences and is starting to actually hold conversations (on

his topic of choice, our next goal is to get him to talk on someone else's

topic).

Loriann

June 20, 2000

In a message dated 6/20/100 9:48:16 PM EST, karen.cornell@...

writes:

<< we are just learning about autism and its impact on .

Administration and staff are always striving to find a way but the big block

has

been not seeing the autism, not getting it as a communicative issue. >>

Hi ,

I think this is my problem. My son is 8 and he is TOTALLY nonverbal. Not a

word, ever. I've posted several posts to the other lists about this and no

one ever said any thing about autism. They all assured me that he would talk

when he was ready. I used to get so frustrated with that. It seemed that no

one understood when I said TOTALLY nonverbal. My son can't sign because he

lacks dexterity in his hands and PECS is something he can't seem to associate

that a door knob means ALL door knobs so he doesn't transfer very well. His

Super Hawk talker is something he uses, but I feel that a lot of the times he

is just hitting the buttons randomly. will be evaluated in July at a

Down Syndrome Clinic. I hope to finally get an accurate diagnosis along with

info on what we are to do with that diagnosis. was diagnosed at the

Children's Seashore House as having autistic tendencies, however, they never

told us what that means and where to take it. I saw recently on a post that

someone mentioned " treatment " and I thought why has no one ever told us about

this!!!!! We have wasted many years waiting for something to happen. Don't

ask me what I expected, but I thought only as he grew would we see something

happen. I hate not knowing about what to do next.

Judy

June 20, 2000

Hi Joan,

You sure know what I'm talking about with and I like all your

suggestions. Kent Moreno had the picnic and he said the same thing.

He said that we need to find something wants to say and that if it has

meaning to him he will want to communicate. I'm waiting for him to send me

more info on contacts in my state and I'm not going to sit stupid anymore.

can only say " EEEEEE " , but he does manage to get across to me all his

needs. No one else outside the family would understand him though. I feel

that I will eventually have many forms of communication available for

to use as he feels meets his needs. I don't care if he shows me a picture or

presses a button, just so he expresses what he wants.

I feel very hopeful and it feels good knowing someone else has been there.

That gives me a direction to head in.

Take care,

Judy

June 20, 2000

Judy:

Andy's 11. Well, 11 1/2. He has no words except " yah. " He is making a " kkk "

sound for kiss these days, which is interesting. He also cannot sign--the

motor issues get in the way, just as they do witn your son.

Alot of his early experimentations with *any* system you use with him

*will* be experimental. Babies experiment with the sounds they make, and

he's going to experiment with what kind of POWER and CONTROL he can get

from his communication systems.

For what seemed like an eternity, I fought with the staff at school about

what Andy was understanding. The difference in our " stance " was that they

were *testing* all the time for what he could do, and I was *teaching* all

the time to shape things into something. There's a huge difference.

I haven't thought this through well enough to explain the process we went

through with Andy for you, but I can tell you taht we are always

teaching....always taking what he shows us he is beginning to understand,

setting it up, listening actively and carefully, and then stretching it.

Sometimes it's successful quickly, other times not.

I CAN tell you that once people stopped testing to see if he *could* " make

a choice " and treated what he did *as his choice* and acted on it, he

started to learn what his actions meant in relation to others. If he

chooses the " dumbo " picture card, we get that and if he didn't want it, he

has to choose again. We do this until it's " right. "

When we used voice output, we came running every time he activated a

button. He began to find it humorous that we would come running and would

push the buttons just to see us come to him. Then he started making his

choices there.

In the beginning, he *needed* the voice. I don't know why. in the last

year, he's starting to like the physical exchange part of the symbols

better. We just go with the flow.

We are still AGES away from spontaneous expression in a conversational

manner, but we're getting closer all the time.

At 8 years old, Andy wasn't anywhere near where he is today (obvious

statement). At 8 years old we were arguing about whether or not he could

make a choice. I said he was learning it, they said he can't. besides the

teaching issue, the other problem was what he was offered to choose FROM.

it has to be interesting to him or it's just not worth it. Same would be

true for you or me.

Look for the thing that your son wants to say. Not what you want him to

say, but what he wants to talk about. For Andy, one of the first things we

did was give him a way to complain about having to share the TV with his

brother. When he hit the picture of his brother it said, " Who said HE could

have a turn! " And when he hit his picture it said, " *I* want a turn NOW! "

Amazingly, when he got to protest and hit 's picture, he didn't tantrum

like he had in the past---even if we helped him do it, the power was still

there.

Another first for Andy was asking for a snack. He loves his food.....

Now he is into emotions, but uses symbols without voice output to do that.

Just remember that everyone uses many different ways to communicate. So if

your son's strengths and interests in communicating change (from voice

output to symbols, for instance), that's probably " normal " ?

I really just wanted to give you hope....and let you know you're not the

only one with a kid with no audible recognizable language.

hugs,

j

June 21, 2000

karen, hey its leah again.......hehe where is this misericordia located and

is it overly expensive......that is my fear, that when ashton gets older i am

still going to be broke.....lololo

April 30, 2001

Thanks, ! I go twice a day and LOVE it. I might buy a franchise....my

hubby really this that I might as well profit while getting fit, so who knows?

I go in the morning alone, and in the early evening with my daughter. She is

13 and loves it too~~although she laughs at some of the music.....she knows

all the Supremes songs by heart! LOL! They play a little of everything, but

she almost always hits the '60's mode!

Hugs and GOOD WORKOUTS!

in ARk

3-08

322-278

April 30, 2001

Hey, !

Do you have DSS or cable? I WATCH (So far that is all I'm daring enough to

do) Yoga....every am they have a very tranquil show on, not sure of channel

(will pay attention for ya next time) I am scared to death to try it..I feel

pretty active til I get on the floor....and all of yoga requires the dreaded

" get down on your knees " LOL

But it looks very good. I am proud that today,after being away from Curves

for a week, I went in and did 7 rounds....4 in the am and 3 this evening. I'm

going to add water aerobics to really stretch the muscles and build tone and

in time, YOGA. But boy, you almost HAVE to be in shape to do it from the

looks of it!

GOOD LUCK and lemme know if you try it!

in Ark

3-08

322-278

April 30, 2001

,

When you are buying that franchise think " northern VA " as a place

to put it Of course you'll have to let me in for cheap! lol...I

checked into the gym prices today at the local ladies gym, and its

cheaper just to buy my own equipment in the long run. I would like

to take some yoga classes... etc,

in VA

> Thanks, ! I go twice a day and LOVE it. I might buy a

franchise....my

> hubby really this that I might as well profit while getting fit, so

who knows?

>

> I go in the morning alone, and in the early evening with my

daughter. She is

> 13 and loves it too~~although she laughs at some of the

music.....she knows

> all the Supremes songs by heart! LOL! They play a little of

everything, but

> she almost always hits the '60's mode!

>

> Hugs and GOOD WORKOUTS!

> in ARk

> 3-08

> 322-278

>

November 16, 2004

Are you sure it was food poisoning? How can you tell? I know a

stomach bug is going around the country and DH and I just had it

about a week and a half ago.

Glad you are back to feeling better. Being sick like that is not

fun. Good for you for getting back to your workouts so soon.

Good luck

Jen B

>

> okay.. so after a stint of food poisoning.. and not getting out of

> bed i'm trying this again. I did my UBWO last night and feel pretty

> good this morning. Woke up and did my 20 of cardio on the bike this

> morning.. still kinda weak but doing it!!

>

> food.

>

> #1 cottage cheese with fruit

> #2 protein shake w/ flax

> #3 kungpao chicken w/ brown rice and spring salad

> #4 small apple w/ pb

> #5 not sure.. i have school tonight maybe a ceasar salad from

wendys?

>

> I rarely eat a meal #6 on school nights.

>

> victoria..

>

> You guys are awesome!!

November 16, 2004

>

> okay.. so after a stint of food poisoning.. and not getting out of

> bed i'm trying this again. I did my UBWO last night and feel

pretty good this morning. Woke up and did my 20 of cardio on the

bike this morning.. still kinda weak but doing it!!

>

YIKES! That is no fun at all! I hope you're feeling better!

Colleen

November 16, 2004

I went to the doctor because i hadnt ate for almost 2 days and wasnt

holding any water in and they told me i was mildly dehydrated. They

didnt confirm or deny that it was food poisoning i just figured it

was because that was all my body seemed to be getting rid of was what

i had ate like 4 hours prior.

> >

> > okay.. so after a stint of food poisoning.. and not getting out

of

> > bed i'm trying this again. I did my UBWO last night and feel

pretty

> > good this morning. Woke up and did my 20 of cardio on the bike

this

> > morning.. still kinda weak but doing it!!

> >

> > food.

> >

> > #1 cottage cheese with fruit

> > #2 protein shake w/ flax

> > #3 kungpao chicken w/ brown rice and spring salad

> > #4 small apple w/ pb

> > #5 not sure.. i have school tonight maybe a ceasar salad from

> wendys?

> >

> > I rarely eat a meal #6 on school nights.

> >

> > victoria..

> >

> > You guys are awesome!!

November 16, 2004

! I hope you're feeling better! I've had food poisoning

before and it is AWFUL!

I'm not sure about the nutritional value of the caesar from 's,

but if you're not too generous with the dressing and you have some

chicken or other protein with it, that sounds like a good plan.

I can barely get all of my 6 meals in when I get up late and go to

bed early. On these days, just make sure you get enough

calories...but not too much.

Good luck and keep up the good work!

-Ruth

>

> okay.. so after a stint of food poisoning.. and not getting out of

> bed i'm trying this again. I did my UBWO last night and feel

pretty

> good this morning. Woke up and did my 20 of cardio on the bike

this

> morning.. still kinda weak but doing it!!

>

> food.

>

> #1 cottage cheese with fruit

> #2 protein shake w/ flax

> #3 kungpao chicken w/ brown rice and spring salad

> #4 small apple w/ pb

> #5 not sure.. i have school tonight maybe a ceasar salad from

wendys?

>

> I rarely eat a meal #6 on school nights.

>

> victoria..

>

> You guys are awesome!!

November 16, 2004

Thank you much.. and actually the chicken caesar (i hate that word)

is 200 cals, 17 carbs, 26 g of protein.. i usually dont use the

dressing cause of the taste but i love romaine lettuce.

I will probably have to find a snack to go with it cause my calories

will be rather low for the day. so maybe one of my yummy protein

cookies for late night snack ;-)

> >

> > okay.. so after a stint of food poisoning.. and not getting out

of

> > bed i'm trying this again. I did my UBWO last night and feel

> pretty

> > good this morning. Woke up and did my 20 of cardio on the bike

> this

> > morning.. still kinda weak but doing it!!

> >

> > food.

> >

> > #1 cottage cheese with fruit

> > #2 protein shake w/ flax

> > #3 kungpao chicken w/ brown rice and spring salad

> > #4 small apple w/ pb

> > #5 not sure.. i have school tonight maybe a ceasar salad from

> wendys?

> >

> > I rarely eat a meal #6 on school nights.

> >

> > victoria..

> >

> > You guys are awesome!!

November 16, 2004

Great job ! That is perfect for an on the run meal. You

really sound like you're right on track! Good luck and I'm glad

you're feeling better!

Take care

> > >

> > > okay.. so after a stint of food poisoning.. and not getting

out

> of

> > > bed i'm trying this again. I did my UBWO last night and feel

> > pretty

> > > good this morning. Woke up and did my 20 of cardio on the bike

> > this

> > > morning.. still kinda weak but doing it!!

> > >

> > > food.

> > >

> > > #1 cottage cheese with fruit

> > > #2 protein shake w/ flax

> > > #3 kungpao chicken w/ brown rice and spring salad

> > > #4 small apple w/ pb

> > > #5 not sure.. i have school tonight maybe a ceasar salad from

> > wendys?

> > >

> > > I rarely eat a meal #6 on school nights.

> > >

> > > victoria..

> > >

> > > You guys are awesome!!

February 25, 2005

Thanks, Cindi, for your suggestions. Nice to know someone shares my

PMS issues!

I have tried a number of meds including nitro & muscle relaxers, but

mostly I just live with the constant ache. When it is a definite

spasm, I can take Midol PMS and they are GONE. Have you tried this?

The only problem is that it makes me really sleepy to take a full (2

capsule) dose; usually I can ease the spasm with just 1/2 capsule and

then I am not a zombie the next day. I'll check my multi-vitamen for

magnesium; it would be an interesting experiment. As for caffiene, I

only have it in chocolate! Stress is a given, but maybe when my two

teenagers are grown & gone, it will be more reasonable!

G. (MI)

> And your pains are probably spasms. There are lots of tricks for

dealing

> with them from Advil, magnesium tablets, to stronger meds. Or

gulping cold

> water (popsicles helped me post-surgery). Reduction in stress

really helps

> and yes, PMS makes them horrible for me. I eliminate caffeine and

take

> magnesium twice a day during that time. Cindi

March 15, 2005

whoa , again!!! I hope some thing is learned hon from this...That hospital beds are harder than heck and that all antibiotics have to be taken till finished..Kathy

again

Hey all,

I just wanted to let you know I am back from another 5 days in the hospital. Please don't yell, I was behaving but when the anti biotics ran out I went down hill fast. Guess there never was a pulled muscle causing all the pain. Left lung was half full and pressure from fluids in the cavity around was choking me. What fun.

I am on strike, determined to behave (yes, I can learn) and happy to be home... even if still dragging the oxy around. Am off the tx again but it all goes well they are talking maybe in a week or so starting up again. Not sure at the moment how far off schedule this puts me and doc doesn't know how it might effect results and so on. What ever... damn glad to be home!

Have fun,

Llinda

March 15, 2005

Dang, Llinda, not again! Praying for you. Take it easier this time.

De

Faith is the ability to not panic.

again

Hey all,

I just wanted to let you know I am back from another 5 days in the hospital. Please don't yell, I was behaving but when the anti biotics ran out I went down hill fast. Guess there never was a pulled muscle causing all the pain. Left lung was half full and pressure from fluids in the cavity around was choking me. What fun.

I am on strike, determined to behave (yes, I can learn) and happy to be home... even if still dragging the oxy around. Am off the tx again but it all goes well they are talking maybe in a week or so starting up again. Not sure at the moment how far off schedule this puts me and doc doesn't know how it might effect results and so on. What ever... damn glad to be home!

Have fun,

Llinda

March 15, 2005

what this with the remark hon..Congrats on it being one year since your surgery..That in itself is wonderful that you can see now..My remark about blindness was not directed at you dear boy..but made in fun about a friend to a friend ok..why you took it to heart is beyond me..Especialy since you don't live with Liz!!! Kathy b

again

Hey all,

I just wanted to let you know I am back from another 5 days in the hospital. Please don't yell, I was behaving but when the anti biotics ran out I went down hill fast. Guess there never was a pulled muscle causing all the pain. Left lung was half full and pressure from fluids in the cavity around was choking me. What fun.

I am on strike, determined to behave (yes, I can learn) and happy to be home... even if still dragging the oxy around. Am off the tx again but it all goes well they are talking maybe in a week or so starting up again. Not sure at the moment how far off schedule this puts me and doc doesn't know how it might effect results and so on. What ever... damn glad to be home!

Have fun,

Llinda

March 15, 2005

I have the honor of being the grandma of 3 asthmatics..We have no carpeting, use no spays, incenses etc.. And all bedroom windows are cracked about one inch..We are just very careful.. And they all the immune systems of elephants.. be very careful..Try and keep the birds in a center locale and use a mask hon..for you..kathy b. RE: again

Ok guys... I thank you for all the best wishes but I really don't need this yelling. I did follow the doctors instructions after an bad start which taught me a lesson... air is good and so had I better be.

I did take all meds to the end. The day after finishing the prescribed course of anti-biotic treatment I was drowning, I did not cause this unless you want to count breathing.

I will continue to follow instructions.

I am off tx for now and I do not smoke. (you should have seen me headed for the air freshener when they took my 78 year old new room mate for x-rays last night. I was choking with her stench on one side and her cloths in a locker by my head on the other... heavy smoker )

I do not have respiratory therapists running around in the woods although I do hear they are in season. I will keep my eyes open for one of the varmints.

I have an air sanitizer on order that I can easily move from room to room as needed and am making some reasonable changes in the way that animals are handled around here.

I am forbidden to go outside by what seems like a hoard of friends with my health at heart.

AND... I am tired, grouchy, not to mention deliriously happy to be home... and I love ya for your concern. I really do. I know you mean well and what's not to love about that?

And on that note I am deleting the 10,083 emails (estimate, lol) and putting on my polar fleece. I will warm myself by the fire while inhaling precious fortified air and enjoy everything I was sooo desperate to get home to. Life is good.

Have fun!

Llinda

whoa , again!!! I hope some thing is learned hon from this...That hospital beds are harder than heck and that all antibiotics have to be taken till finished..Kathy

March 16, 2005

Then why did you get so upset about a simple joke!!!! Kathy

again

Hey all,

I just wanted to let you know I am back from another 5 days in the hospital. Please don't yell, I was behaving but when the anti biotics ran out I went down hill fast. Guess there never was a pulled muscle causing all the pain. Left lung was half full and pressure from fluids in the cavity around was choking me. What fun.

I am on strike, determined to behave (yes, I can learn) and happy to be home... even if still dragging the oxy around. Am off the tx again but it all goes well they are talking maybe in a week or so starting up again. Not sure at the moment how far off schedule this puts me and doc doesn't know how it might effect results and so on. What ever... damn glad to be home!

Have fun,

LlindaLiz and DebGroup Owners

May 5, 2005

Hi Cindi,

Thank you for the info on the Cleveland Clinic. I read the postings

about the others who have been there. Thats wonderful that its so

close (probably about 3-4 hours away). My second opinion appointment

is May 10 at U of M with a Gastreoenterologist -Dr Nostrant- that has

intrests in achalasia and has done research in the area. I will

mention Dr Rice and the Cleveland Clinic to see what he has to say.

Since I work in large metropolitian hospital, I've been asking

various GI physicians about the disease and what they know. I was

curious as to everyones age in the group as almost all the physicians

I've met have only seen " A " in the elderly. I just finished nursing

school and the disease was never even brought up or discussed in the

GI section. Does anyone know if there is a geneitc link? I know my

grandfather has a horrible time swallowing food for many many years

but never has been treated for the problem ...probably because he's

86 y/o now!

The friends and family support sounds great! I think my mom

needs more coping than I do sometimes .

Thankyou!

Michigan

> My mom is still in denial! LOL! And it doesn't help that I have

a sister

> who has had anorexia for over 25 years....I have taken the route of

telling

> her as little as possible. Sad to say, but since it is a

degenerative

> disease, I know I'll have to deal with it the rest of my life & I'm

fine

> with that....even if she isn't!

>

> Which reminds me, everyone....really, I will post the info on

supporting friends and family with A soon! I promise!!! Cindi

>

May 5, 2005

:

My daughter is also in Nursing School. Last week the instructor

brought up Achalasia. My daughter told me that when there is a test,

your answers can ONLY be what was discussed in class, nothing more

(which sounds insane to me).

The instructor mentioned Achalasia and some of the symptoms. Then

she said, " you will probably never actually see this disease. " My

daughter raised her hand and asked if significant weight loss is

usually a symptom. The instructor said, " Oh yes, that is also a

symptom. " Meanwhile that is a GLARING symptom.

My daughter then said that her mother was diagnosed with this

disease, and mentioned my weight loss and surgery. The instructor

said, I have been in nursing for 34 years, and have never seen anyone

with this disease. Then moved on to the next subject.

I just think it is interesting that, although it IS being brought

up, there is really NO interest. She could have asked my daughter

some questions ... I provided her with a copy of Joans brochure ...

but there just was no interest at all.

At least they brought it up, where you, never even heard of

it. INTERESTING! Kathie in Pittsburgh

> > My mom is still in denial! LOL! And it doesn't help that I

have

> a sister

> > who has had anorexia for over 25 years....I have taken the route

of

> telling

> > her as little as possible. Sad to say, but since it is a

> degenerative

> > disease, I know I'll have to deal with it the rest of my life &

I'm

> fine

> > with that....even if she isn't!

> >

> > Which reminds me, everyone....really, I will post the info on

> supporting friends and family with A soon! I promise!!! Cindi

> >

May 5, 2005

--

I wouldn't dream of telling you what to do or not do, but I will give you my own

PERSONAL experience with Dr. Nostrant. Others may not have had this experience

with him and may give him a glowing recommendation, but I personally cannot.

I found him to be very dismissing of me as his patient. He outright lied to me

about the treatment options available to me the first time around (1996) and

then he lied to me again two years ago when he Botoxed my LES without explaining

the risks of Botox or the research behind it. (I had gone there expecting

another dilation, and instead found out 15mins before my procedure that I was

having Botox instead.) If I had known the things about Botox that I learned a

few months after having had it done, I would have run out of the MPU with my

butt showing through the back of my hospital gown.

I'm not sure what part of Michigan you're in, but I'm in the Kalamazoo area, and

I now make the drive to Cleveland. There is nobody in this state who is

remotely as experienced or as educated with achalasia (in spite of what they'll

tell you to the contrary -- the numbers simply don't lie!) as they are at TCC,

and after my experiences with a GI in Kalamazoo and then Nostrant-and-associates

at UMMC, I much prefer the drive to Cleveland over receiving sub-standard

medical care closer to home.

As for age, we've got people from kindergarten through senior citizens here in

this group -- my own symptoms started in my early-20's (I'm now 36yo). We do

seem to have more women than men, but that may simply be a result of the fact

that women are more likely to seek support from a group like this. (In fact, we

have a few women who are members b/c their husbands have achalasia!) A genetic

link is POSSIBLE, however the incidence is so rare that it's hard to tie it down

to that. So far no " achalasia gene " has been discovered.

Hope this helps, and if you have any questions please feel free to post them or

email me directly, if you wish!

Debbi in Michigan