Joan

[Guest guest]

At 10:00 PM 8/17/00 EDT, you wrote:

>lmao not train website, but i think it has the name trainland or somethingin

>it....its got colorful picture ques that you can print out for communication

>boards adn so on... it has the rests. and disney movies.....that one..is

that

>a better clarification

Here you go:

http://trainland.tripod.com/pecs.htm

j

[Guest guest]

Joan,

Have you read the book " Becoming Partners with your Children: From Play to

Conversation " ? A lady named Barbara that works with Macdonald said she

has met you and that you are a " Very nice and a hard worker. " What did you

think of the book? She said I should read it.

Gail

[Guest guest]

In a message dated 4/23/01 11:42:58 AM Eastern Daylight Time,

jmedlen@... writes:

> PS--I " m having a mind block, but there may be a different version of the

> book than what I " m thinking of. I have this vague memory of an easier to

> read thing that was more like the newsletter they publish (published?).

> The newsletter format was much easier for me to deal with.

>

Yes, I have numerous newsletters that Barbara had mailed to me ages ago.

Gail, I'd be more than happy to lend them to you. Email me your snail mail

addy and I'll send them out to you.

Donna

[Guest guest]

At 10:00 AM 4/23/01 EDT, you wrote:

>Joan,

>Have you read the book " Becoming Partners with your Children: From Play to

>Conversation " ?

I remember that I had it at one point...I think I've loaned it out. It was

a little overwhelming for me at the time because of it's textbook-like

quality (little type, long passages). LIke Andy, I'm pretty visual. And

when I'm reading something for answers, I really like short, direct

sentences. I'm often not as interested in the philosophy as I am " Tell me

how, tell me why later. " It meshes well with Greespan's philosophy, where

you let the child lead and then build on what responses you have. I think

it can be effective, but it takes consistency and time---just like any

program, you know? My gut instinct is that it's one of the viable options

if your child engages with you or doesn't shrink away from your presence

like many kisd with autism only do. If your child does the that, then

perhaps you'll have a more effective beginning with somethingmore like

PECS. Does this make sense? (I'm all jet lagged...)

A lady named Barbara that works with Macdonald said she

>has met you and that you are a " Very nice and a hard worker. " What did you

>think of the book? She said I should read it.

She's kind. At least she didn't say " I look so young! " (she's read that a

few hundred times). She is very dedicated to this approach and could answer

any quesitons you have very well.

Does that help?

j

PS--I " m having a mind block, but there may be a different version of the

book than what I " m thinking of. I have this vague memory of an easier to

read thing that was more like the newsletter they publish (published?).

The newsletter format was much easier for me to deal with.

[Guest guest]

In a message dated 4/23/01 11:42:59 AM Eastern Daylight Time,

jmedlen@... writes:

<< It meshes well with Greespan's philosophy, where

you let the child lead and then build on what responses you have. I think

it can be effective, but it takes consistency and time---just like any

program, you know? My gut instinct is that it's one of the viable options

if your child engages with you or doesn't shrink away from your presence

like many kisd with autism only do. If your child does the that, then

perhaps you'll have a more effective beginning with somethingmore like

PECS. Does this make sense? (I'm all jet lagged...)

>>

Thanks Joan. I too am more visual and the *tell me why later* type person.

I really like this method and it is working with Seth. What they do in

school, works for when he's in school, but doesn't carry over at home well.

I'll stick with this method through summer and see how it goes I guess.

Thanks.

Gail

[Guest guest]

At 10:17 PM 9/16/01 -0700, you wrote:

>Hi Joan

>Just wondering why my posts will not go through??

>I recently changed my address and I do receive other

>posts but not mine?? What can I do??

Hey...*I* got them! Have yous een them yet? (I got two about hte calendar)

j

[Guest guest]

yes!! They posted about 8 hours after I sent them

Kathy

Re: Joan

> At 10:17 PM 9/16/01 -0700, you wrote:

> >Hi Joan

> >Just wondering why my posts will not go through??

> >I recently changed my address and I do receive other

> >posts but not mine?? What can I do??

>

> Hey...*I* got them! Have yous een them yet? (I got two about hte calendar)

>

> j

>

>

> --------------------------------------------------

> Checkout our homepage for information, bookmarks, and photos

of our kids. Share favorite bookmarks, ideas, and other information by

including them. Don't forget, messages are a permanent record of the

archives for our list.

> --------------------------------------------

>

>

[Guest guest]

Joan,

I'm so sorry to hear of the loss of your grandmother. It hasn't been too

long since I lost my grandmother last May, at 101 years old, so I remember

having to decide what to do with Miles, Brook and Gennie. I hope everything

goes smoothly on Tuesday. I'm sure that having Andy there with you will be

very comforting.

Marisa

Mom to Miles 14, Brook 11yrs and Genevieve 4yrs

[Guest guest]

J,

Will Dr. Capone contact me directly now? Haven't heard anything back yet.

[Guest guest]

At 03:07 PM 2/22/2002 EST, you wrote:

>J,

>Will Dr. Capone contact me directly now? Haven't heard anything back yet.

I assume so. I haven't heard anything either. I'll send him a note.

j

[Guest guest]

In a message dated 6/6/2002 12:48:57 AM Eastern Daylight Time,

joan@... writes:

> Remember, the police would have records of this. ANY call they responded

> to--and maybe any call at all--will be recorded.

Hi Joan,

Yes, I know this. My hearing is tomorrow, scared to death anyway. I'm just

hoping I can stand up to the harrassment. I will be thinking of Andy's long

walk and hope he can miraculously sprint.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Charlyne:

We'll all be thinking of you.

I'm sooooo sorry Zeb and you have to go through this.

People with disabilities are the last group our society tolerates active

discrimination toward. It's abominable.

take care.

j

[Guest guest]

Charlyne, How did things go today? I must confess, I lost track of the

order of things with the hearing and everything for Zeb.

I do not understand why some people can be SO cruel. Hang tight, you know

you have some powerful friends backing you!

Hugs,

Beth Mum to Ben age 11 1/2

[Guest guest]

At 01:26 AM 6/20/2002 EDT, you wrote:

>

>Joan? You sound happy. Things going well with Andy?

Actually, things are fine. We're all surviving each other pleasantly. I

don't have his visual stuff put together yet, which is not good, but we're

doing OK without it.

either that or I've merely lost my marbles.

j

[Guest guest]

In a message dated 9/18/02 5:50:15 AM Eastern Daylight Time,

mick8_7@... writes:

> I am confused whether to take Mics stim toys away or what I took all his

> stim toys and stopped him from spinning and eye cutting.He was really

> stressed.So I gave them all back and hes muchhappier do I phase these out I

> cant figure out how to replace his watch he dangles all the time to

> something constructive.Mic is really back to pulling my hair and the mean

> mommy isnt working.

Laurie,

The idea behind Floortime is to USE the stim objects rather than taking

them away. Use the watch to engage him in building relationships with you

and your husband and the therapists. If he lets you, take the watch and

put it on your head, giggling hysterically, letting it fall into his lap.

Kiss it, feed it food, hold it up to your eyes to lure Mic into looking at

you. You need to EXPAND on his interests, not take them away. TAking

away the object is only going to anger him, and believe me, he'll just find

another thing to stim with. The idea is you want Mic to WANT to be

playful, to WANT to engage you for longer periods of time, to WANT to play

with toys. And when he pulls your hair (I go with Joan on this one, he's

probably grabbing a hold of it sort of as a handle----Maddie uses her Dad's

ears as handles...LOL), take his hand, and using hand over hand, teach him to

rub it gently, saying " ah ah Mommy " ....we did this with Maddie when she

started with a hitting in the face phase, and now it's SO cute...she takes

her little hands and puts them on either side of your face and holds gently.

SAme thing with the dog, who she was hurting. Yes, it takes time and

consistency, but they eventually get it.

As for your Mom and Dad, can I give my opinion??? Laurie, sometimes you

really can't teach an old dog new tricks, and sometimes people need to learn

for themselves. Maybe your parents are the former or the latter, but I

really don't believe that you can effect it one way or the other. It's

SO hard to separate the issues when all you want is support from your

parents, but it may not be the type of support they are ready to give.

Maybe they are in denial because it's easier for them to do that than deal

with your pain. They are up in years and your time with them is limited.

Do your best to not let this get in the way of your relationship with them.

I speak from experience. My mother and I had troubles (and I have

troubles wiht no one ever on the planet...but my mother constantly had

conflict with someone at every moment of her life...I suppose it was

inevitable it would hit me too one day) and I thank God that she didn't die

in the midst of that bad time. She died later, and I was completely

validated by my siblings in that whole awful time, but that wouldn't have

meant a thing to me if I had lost my mother when we were at odds. Take it

from me; you don't want that on your heart.

BTW, I'm glad Mic is getting some sleep, but if I were you, I'd skip the

benedryl for myself and have a hot soak and a Chardonnay....along with a good

book mind you, that speaks NOTHING of DS and autism......;-)

Donna

[Guest guest]

In a message dated 6/4/2003 9:09:39 AM Eastern Daylight Time,

joan@... writes:

> Knowledge is a great tool, but it is rendered helpless in times of crisis

> without folks to shore you up. I'm sure you know that we're all walking

> with you in our thoughts and prayers.

>

> I love the way folks rally on this list.

Hi J,

Me too. I am so grateful to have everyone.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Hi Joan,

Nice to hear from you and glad you arrived safely. Have a safe trip

on your vacation and may Andy have a nice time. One of the reasons

why I'm writing and I know you might get tired of hearing us when we

praise you for so much on what you are doing for many including my

family with this listserv. Which you deserve on bringing us all

together.

Well, I have unsubscribed to a couple OTHER listserve recently that

just kept bickering back and forth and I just wanted to thank you

with lots of hugs that everyone here on this list have been Blessed

with a wonderful moderator. So do not ever forget that. You continue

to keep us all in line when we misbehave, ok?

I can see why. Great job moderator!

Enjoy your time away when it happens and have some fun with your

family so that you could get refreshed and you can enlighten us with

your expertise when you're back in action. Hugs!

Irma,14,DS/ASD

[Guest guest]

Hi Joan,

Nice to hear from you and glad you arrived safely. Have a safe trip

on your vacation and may Andy have a nice time. One of the reasons

why I'm writing and I know you might get tired of hearing us when we

praise you for so much on what you are doing for many including my

family with this listserv. Which you deserve on bringing us all

together.

Well, I have unsubscribed to a couple OTHER listserve recently that

just kept bickering back and forth and I just wanted to thank you

with lots of hugs that everyone here on this list have been Blessed

with a wonderful moderator. So do not ever forget that. You continue

to keep us all in line when we misbehave, ok?

I can see why. Great job moderator!

Enjoy your time away when it happens and have some fun with your

family so that you could get refreshed and you can enlighten us with

your expertise when you're back in action. Hugs!

Irma,14,DS/ASD

[Guest guest]

Hi Irma:

Thanks for the nice words, but really, this list is totally *made* by the

people who participate in it. The lack of bickering and confrontation

speaks clearly and highly of everyone here. I've come to the conclusion

over the years taht for the most part, having a child who doesn't fit the

mold makes it a lot easier to accept differences in life. I could be wrong.

I am always buoyed when I read people coming to each other's aid, by

offering constructive information and stories from their own experiences

(both good and bad!). Sharing that sort of informatin is how we all make

better choices for our individual families. I've yet to hear someone say

there's only one way to do something. And that is where our strength is as

a group.

There are many ways to meet our own personal family goals. And primary

among the methods of getting there is showing respect for each other.

The thanks for the quality of the list is solely in the hands of the

participants. I am very proud of each one of you.

Some day I'll update you on our summer.........

Joan

[Guest guest]

Hi Irma:

Thanks for the nice words, but really, this list is totally *made* by the

people who participate in it. The lack of bickering and confrontation

speaks clearly and highly of everyone here. I've come to the conclusion

over the years taht for the most part, having a child who doesn't fit the

mold makes it a lot easier to accept differences in life. I could be wrong.

I am always buoyed when I read people coming to each other's aid, by

offering constructive information and stories from their own experiences

(both good and bad!). Sharing that sort of informatin is how we all make

better choices for our individual families. I've yet to hear someone say

there's only one way to do something. And that is where our strength is as

a group.

There are many ways to meet our own personal family goals. And primary

among the methods of getting there is showing respect for each other.

The thanks for the quality of the list is solely in the hands of the

participants. I am very proud of each one of you.

Some day I'll update you on our summer.........

Joan

[Guest guest]

I agree with you. RESPECT is correct. Everyone is open to many

solutions or relating to the experiences which I admired and makes a

person feel welcome and not a stranger or a pest. Its great to learn

from y'all who are also traveling on this voyage.

We are not alone. You're still a great moderator because you will

not allow unwanted issues to drag, like we really need that battle

and need to devote our energy on absorbing any information to

educate ourselves to confront our major issue which involves our

child with special needs.

Looking forward hearing on the update summer news. Plus there is

always a delete button, depending how we retrieve our messages.

The state you live in made national news the other night on the

drastic financial cut. I hope we all learn and battle this crisis.

On the Microboard you've mentioned I heard this sometime in February

of a mom with a 29 y/o son with Autism who is working on this. I set

this information aside to review later, interesting.

Thanks.

Irma,14,DS/ASD

[Guest guest]

Hi Joan,

Thanks and staying mums about it. Ok, after this.

My clarification on what I said on this issue on " what a shame " but

I understand why now as I seen too many other list that were not

nice and this did stir up some problems. I believe I am wrong here

comparing the other groups to this one as this one does have alot of

respect towards others. So once again an apology to this insult.

When the subject arised it was with great intentions but then many

who are always searching for answers were not aware.

We have lurkers, we have numerous newbies, etc. as you are aware of,

so thanks for clarifying this again so that we know that no one did

anything wrong when bringing something like this up.

This group to me are a " champion of parents " always encouraging,

pulling together with a wealth of information needed to fight the

system or get the best services for our child.

Thanks for guiding us towards many direction bringing us together

and as always respecting your intentions, as well as to all the

parents on this list to keep this list strong and building our

strength, faith, giving us some hope and some peace when it comes to

the care of our child.

Sorry, don't want to sound like a trouble maker or a whiner when I

voice my opinions and thanks for respecting them. I guess when I

write its due to having one of those days when you feel like a

misfit and concerns arise when you feel like you're the only one

searching for any answer for your child and others are in their own

world meaning outside of this group which of course involves the

daily personal issues with family or friends, etc.

Things just pile up like why do we sacrifice so much for our child

when others do not care? Is their a solution a key to make things

smooth in our lives as we struggle to understand or make things

happen. I do try to keep an open mind about things. Its work having

to get educated but a great reward when my son shows some progress

that it was worth it.

Then you have the political issues kicking in wanting to discontinue

alot of services or funds, so what a run around with this. Then

figuring out this just means I really need to learn as much as I can

for my son's sake just when I thought things were going well once I

found some solutions for my son. This was already work on where he

is at now to begin with. Another battle as the challenges continues

to grow.

So of course I get stressed, frustrated and discouraged like doesn't

anyone care about 's future? Fifteen years of it, too long. I

can imagine the others with older kids. Is this a break down or

what? But, then I know I should not make a " moutain out of a

molehill. " Everyone is unique, thanks for listening and I'll be

fine. Just needed to take a breather and sorry y'all were the chosen

ones.

Irma,14,ds/asd

[Guest guest]

>Irma,

>I have been extremely discouraged and wondering what will be left of me

>after having been in these constant battles for a child with special needs

>after 15 years.....I have resigned myself to a " one day at a time "

>strategy but some days even that just doesn't cut it. It is amazing to me

>what the human spirit can endure and still survive. It helps to have

>cyberfriends and those that have " been there " ...hugs to everyone that is

>so supportive here. Irma, extra hugs to you!!!

>So of course I get stressed, frustrated and discouraged like doesn't

>anyone care about 's future? Fifteen years of it, too long. I

>can imagine the others with older kids. Is this a break down or

>what? But, then I know I should not make a " moutain out of a

>molehill. " Everyone is unique, thanks for listening and I'll be

>fine. Just needed to take a breather and sorry y'all were the chosen

>ones.

>Irma,14,ds/asd

>

>

>

>

>--------------------------------------------------

>Checkout our homepage for information, bookmarks, and photos

>of our kids. Share favorite bookmarks, ideas, and other information by

>including them. Don't forget, messages are a permanent record of the

>archives for our list.

>--------------------------------------------

>

>

[Guest guest]

Thanks CIndi - right now I need some help with the communication skywards ! I am really between things and looking for viable options - for that glass of lemonade I feel it is my turn to have.

Namibia is a spectacular country. The desert is something very special. I lived for two years in a small town on the boarder where my husband was in charge of a road building project (he is a civil engineer). We drove up into the Kalahari Gemsbok Park over a long weekend and it was really fantastic. That is the home of the San (Bushmen) and similar to parts of Namibia. I love the hot dry climate in summer and crisp cold in winter.

Most people pass through Johannesburg on their way to the rest of the country so it would be wonderful if I could meet up with you here.I hope you will be able to see more than just Namibia.

Joan

Joan

Joan - I wish I could offer you answers to your questions. Since I havenone, I will promise to support you through this and to pray continually foryour return to health. Your questions are excellent and I look forward tohearing the answers from the surgeon. Please keep us posted. CindiPS - did I ever tell you my husband has cousins in Namibia? I know they go to S. Afr. on occaision. They are coming "home" next year & we will see them. Well, if we ever get out to visit them, we will try to find you, too!!

[Guest guest]

Hello Jan

In reference to your comment:

Joan, Is it possible for you to send me the pamphlet i would be really interested to read it and so would my kids.

Jan, I know Joan sent you the phamplet, but for others who

would like to read it, it can be found on our website. On the

left hand side, click on Files and then look for "Achalasia

Pamphlet".

Maggie