Re: Meeting with Jayne and my ramblings

[Guest guest]

In a message dated 3/9/2006 6:52:01 P.M. Eastern Standard Time,

mick8_7@... writes:

I thought this was great ramblings Carol and I know when Joan found me I got

to this group I was shell shocked for along time

Thanks Laurie,

We all are effected in different ways and react in different ways to our

children's special needs but we all are the same in that we want what is best

for our children. The problem sometimes is in not only knowing what our

children needs but learning to listen to our children when they tell us they

have

had enough of our wants being addressed and for us to listen to what they

want and need. It's kind of like when my son was little and was in the

hospital

and at that time all he would eat was french fries and scrambled eggs with

ketchup and if it didn't have ketchup on it he wouldn't eat those. Well the

nurse kept bringing him other foods instead of what was requested saying that

they were healthier for him and after my son was screaming because he was

hungry causing him more medical problems the doctor came in to find out what

was

going on and when I explained he turned to the nurse and said, it can't be

nutrional for him if he won't eat. So he wrote a prescription for french

fries and scrambled eggs and a bottle of ketchup. At that time my son was way

under weight and height and the doctor just wanted him to eat he was in

isolation because his immune system went haywire so he was stressed enough as

it

was. (btw, he spent more time in the hospital than Trisha ever did and he was a

" typical " child) So for me, if what I am doing hoping that it's going to

help is not helping then I move on and try something else. It's so important

to

listen to our kids or at least watch for any signs that what we think they

need, may be just a tad off. :-) opps there I go climbing back on my

soapbox. sorry.

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

I thought this was great ramblings Carol and I know when Joan found me I got to

this group I was shell shocked for along time.At 3 old months they told us Mic

had downsyndrome we had no idea he didnt look ds but what we thought was a week

in the hospital for RSV turned into ds and congestive heart failure.Just when he

was recovering from heart surgery I was in the ds-heart group and kept

mentioning Mic was doing strange things and Joan sent me to Disabiltysolutions

and I will never forget that day. Complete shell shock I knew right away Mic had

asd.It seems so long ago now, everyone here has been thru so much with me in the

last 3 years and I really dont know where I would have ended up if it wasnt for

the people here.Gosh I would love to make the picnic maybe I can coax alittle

and see. I have a feeling of belonging here. Laurie

[Guest guest]

Carol.

YOu say many very wise things.

Many of these ideas are wonderful as well. If we find

funding for the DSAICE (tentative name: Down Syndrome

and Autism Internet Center of Excellence), I think we

can put together a virtual workshop, information, and

materials like you suggest.

I'm curious what happened that led you to your

soapbox....feel free to share with me privately if

you'd like.

I know that I have attended so many workshops trying

to learn for my work and Andy. EAch time I know that

no matter what I learn, there are pieces that need to

be adapted to work for Andy's personality. If others

helping us implement can't stray fromthe " program, "

then we're doomed.

For now, share those ideas with me so I can begin to

document them electronically (giving each person their

proper credit) and when we're ready to get them

online, we will!!!

TAke care,

Joan

__________________________________________________

[Guest guest]

Okay, Carol's making me blush! Way too kind! Thank you though Carol.

Let me tell you, Carol is an amazing woman as well. She came with her tote

bag of goodies - Gertie balls for , tons of pictures of Trisha, and

examples of all the wonderful things she's made for visual strategies! Give

that girl some felt, cardstock, and a laminator and step back! Voila, instant

travel schedule! Great ideas.

As Carol mentioned, we couldn't sit together at the conference. This

hotel/conference was a bit lame. We paid $45 to sit at rickety tables with

totally uncomfortable chairs. Although I shouldn't gripe, Carol sat on the

floor for the first 15 minutes she was there. Then she got a chair, but no

table! We never got any coffe, water, or the pastries I was dreaming up on my

ride there! LOL!

There were several glitches in the conference but the bottom line was that we

got confirmation that everything we are doing for our kids already, is what we

should be doing! LOL! In other words, we knew everything she was talking

about! It was interesting though because this was a conference for SLP's that

we managed to get " approval " to attend. I think the lady in charge felt so bad

for me when I told her my child had Ds AND Autism and that his Mommy could

really benefit from attending!

Carol was able to ask a question and revealed herself as a parent. She was

then asked later by Hodgdon her opinion of a particular part of the

conference, as a parent. Carol, represented us quite well, a good speaker on

the spot! Glad she didn't call on me! I was totally under the radar,

undercover as an SLP if you will, just waiting to hear someone sitting around me

make a negative comment about our kids or parents and then I'd reaveal myself!

:-) I'm awful aren't I? Well, it never happened, these SLP's apparently mean

well! LOL! I did, in the end, reveal myself to Hodgdon who was a bit

shocked that there were two parents in the audience when it was a conference for

SLP's. I like to keep people on their toes!

Carol has some great ideas for parents to network and share ideas. It's

something that I think would be received well. We ran into a Professor from

ODU, the college I spoke at recently. She had been in the audience when I spoke

and had come up and chatted with me afterwords. She told us that she'd like to

have us speak at the conference we attended today, next year. She wants us to

share what's working for us! This is kind of how Carol and I got on our

Soapbox! See, you get inside the circle and it opens up so many doors!

Okay, that's it for now - it's late! Can't wait for the picnic so I can meet

some more of my " invisible " friends!

Jayne

Csvillars@... wrote:

It was so awesome meeting Jayne at the workshop today. We didn't get to sit

together during the session but we did go out and have lunch together

afterwards. She is just as lovely and sweet in person as she is online. :-)

I

can't wait until May when we will have another chance to meet again. I know

when you guys meet with Jayne at the picnic you are just going to love her!

After the workshop I think we( I have, don't want to speak for anyone else)

have come to the conclusion that we parents need to hold a seminar for other

parents and professionals, you know, share what we have learned over the years.

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Ladies....

If you do this, ASK TO BE PAID.

They're paying everyone else. They can pay you, too.

And they can pay for your room if you stay over night.

LInda Hodgdon is expensive.

I used to go to ODE trainings for professionals and

met some great people that way. Pat Mirenda was

one--she is like one of the early powerhouses for AAC.

She taught me that whatever is on Andy's voice output

has to sound like Andy! And it MUST include impolite

phrases (I always put " get out of my face " on there

and the staff asks me to take it off and I refuse...)

There's nothing that says you can't go...unless they

tell you so when you register.

Good work ladies!

Joan

__________________________________________________

[Guest guest]

Hi Ladies,

It was so great that you could get together. It was fun reading. So was the

conference good? Any new ideas? Years ago I signed up and attended an OT

conference. I had no idea it was for OT's. I was so out of place besides not too

bright. I was so scared that I didn't dare reveal I was a parent. When asked

were I was from I said a small nonprofit home. They showed pictures of kids that

were so severly impaired that I still have them in my mind. Lessoned learned the

hardway not to sign up for professional development trainings, like I knew what

that meant back then,LOL.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

Jayne Hickey wrote:

Okay, Carol's making me blush! Way too kind! Thank you though Carol.

Let me tell you, Carol is an amazing woman as well. She came with her tote bag

of goodies - Gertie balls for , tons of pictures of Trisha, and examples

of all the wonderful things she's made for visual strategies! Give that girl

some felt, cardstock, and a laminator and step back! Voila, instant travel

schedule! Great ideas.

As Carol mentioned, we couldn't sit together at the conference. This

hotel/conference was a bit lame. We paid $45 to sit at rickety tables with

totally uncomfortable chairs. Although I shouldn't gripe, Carol sat on the floor

for the first 15 minutes she was there. Then she got a chair, but no table! We

never got any coffe, water, or the pastries I was dreaming up on my ride there!

LOL!

There were several glitches in the conference but the bottom line was that we

got confirmation that everything we are doing for our kids already, is what we

should be doing! LOL! In other words, we knew everything she was talking about!

It was interesting though because this was a conference for SLP's that we

managed to get " approval " to attend. I think the lady in charge felt so bad for

me when I told her my child had Ds AND Autism and that his Mommy could really

benefit from attending!

Carol was able to ask a question and revealed herself as a parent. She was then

asked later by Hodgdon her opinion of a particular part of the conference,

as a parent. Carol, represented us quite well, a good speaker on the spot! Glad

she didn't call on me! I was totally under the radar, undercover as an SLP if

you will, just waiting to hear someone sitting around me make a negative comment

about our kids or parents and then I'd reaveal myself! :-) I'm awful aren't I?

Well, it never happened, these SLP's apparently mean well! LOL! I did, in the

end, reveal myself to Hodgdon who was a bit shocked that there were two

parents in the audience when it was a conference for SLP's. I like to keep

people on their toes!

Carol has some great ideas for parents to network and share ideas. It's

something that I think would be received well. We ran into a Professor from ODU,

the college I spoke at recently. She had been in the audience when I spoke and

had come up and chatted with me afterwords. She told us that she'd like to have

us speak at the conference we attended today, next year. She wants us to share

what's working for us! This is kind of how Carol and I got on our Soapbox! See,

you get inside the circle and it opens up so many doors!

Okay, that's it for now - it's late! Can't wait for the picnic so I can meet

some more of my " invisible " friends!

Jayne

Csvillars@... wrote:

It was so awesome meeting Jayne at the workshop today. We didn't get to sit

together during the session but we did go out and have lunch together

afterwards. She is just as lovely and sweet in person as she is online. :-) I

can't wait until May when we will have another chance to meet again. I know

when you guys meet with Jayne at the picnic you are just going to love her!

After the workshop I think we( I have, don't want to speak for anyone else)

have come to the conclusion that we parents need to hold a seminar for other

parents and professionals, you know, share what we have learned over the years.

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

In a message dated 3/10/2006 12:33:54 A.M. Eastern Standard Time,

charlyne1121@... writes:

Lessoned learned the hardway not to sign up for professional development

trainings, like I knew what that meant back then

Now see I am different, I was actually a little disappointed because I

thought wow these are professionals I am sure to learn a lot and sadly that

wasn't the case. About the only thing I got out of this training was that I

have

been doing the " right " thing all along. To me most of what was covered was

just plain common sense to me. But of course I have to admit I have done tons

of research over the years and while it doesn't give me a degree it sure

makes it easier to work at home. I agree with Jayne, we spent 45 dollars just

to confirm we knew what we were doing. lol

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

In a message dated 3/9/2006 11:35:17 P.M. Eastern Standard Time,

jacksonsmom99@... writes:

Okay, Carol's making me blush

now look who is making who blush! I guess you can say we have a mutual

admiration society going on. lol

I think one of the important things that needs to be addressed and was only

briefly brought up is that more information should be sent home to parents

along with the pictures/schedules etc. Often times a parent will be told to

make a schedule but no one sits down with that parent and shows them how.

There is so much more to making schedules than just sticking some pictures on a

board. As I told our school just recently, you need to tell me what

exercises you are working on, how you do your schedules etc so that I can be

doing

the same thing at home, how can I work with Trisha to make sure what she does

at school carries over if that information is being held top secret! As a

parent I should have the clearance to be given this info as well. All to many

times you will hear the school say things like that is part of the normal

curriculum, well, dang! that is great but if you don't tell parents how are

they

expected to know. So I ask, and then I hear oh that is just part of... and

I respond, that is great but tell me about it anyway so that I know. :-)

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

In a message dated 3/10/2006 12:34:00 A.M. Eastern Standard Time,

jegm2002@... writes:

And it MUST include impolite

phrases (I always put " get out of my face " on there

and the staff asks me to take it off and I refuse...)

You know I think that is one thing about our kids that is overlooked so much

and that is giving them the freedom to be just kids and to be able to

express themselves as kids, not just the way we adults want them to. We fight

so

hard for our kids to be accepted like any other child but we often don't give

them the tools. Our kids are different and nothing will change that BUT, our

kids are also more " normal " at times than they are different. ex. Trisha

will wait for me to leave the room before she sneaks into the fridge to find a

goodie and she hides the wrappings under her computer desk like I won't find

them when I go to clean. lol

Carol

Trishasmom

She isn't Typical, She's Trisha!

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

Hi Carol,

Just want to tell you I agree with you on that, I want to share a story with

all of you. The other day the teacher told me they had a real Kodak moment.

A student in 's class was making a lot of noise humming, etc. They all

tried to get him to stop as the rest of class was trying to do thier work.

The student continued and then said rather loudly to the student " SHUT

UP " . the teacher said they were all hysterical, and the student stopped .

unfortunatly only briefly, and continued to tell him to shut up, they had

to redirect , but she said it was priceless because said what they

all wanted to but couldn't. Viola:

You know I think that is one thing about our kids that is overlooked so

much

and that is giving them the freedom to be just kids and to be able to

express themselves as kids, not just the way we adults want them to. We

fight so

hard for our kids to be accepted like any other child

[Guest guest]

Carol,

Ramble away dear!!! ;-) We do have a lot to offer, and the most

valuable thing we bring to the table is the knowledge we have about our own

individual child. Professionals may have the *diagram*, but we have the

working

tools right in our heads. Often, they need to be reminded of that. I'm

in the middle of this sort of thing right now. We're starting intensive

potty training for Maddie, and I have already told them that we WILL back off

the

minute we see ANYTHING negative. They may know the *protocol* that works

for kids and throw stats out at me, but *I* know my kid. I am lucky in that

this is a private school, and while I may not have final say in some issues,

I do with this one. Will keep you all posted.

Glad you and Jayne got to meet. I can't wait til the picnic, where many

of us will get that opportunity.

Donna

[Guest guest]

In a message dated 3/10/2006 7:30:13 A.M. Eastern Standard Time,

Csvillars@... writes:

I agree with Jayne, we spent 45 dollars just

to confirm we knew what we were doing. lol

This happens to me when I go too Carol. EXCEPT for the Greenspan

ones....he just intrigues me.

Donna

[Guest guest]

In a message dated 3/10/2006 7:58:44 A.M. Eastern Standard Time,

Csvillars@... writes:

that BUT, our

kids are also more " normal " at times than they are different. ex. Trisha

will wait for me to leave the room before she sneaks into the fridge to

find a

goodie and she hides the wrappings under her computer desk like I won't

find

them when I go to clean. lol

LOL

Yea, kinda like Maddie hiding the bar of soap between her mattress and box

spring....LOL

Donna

[Guest guest]

Hi Carol,

At least you had an expensive confirmation that you are doing everything

right,LOL.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

Csvillars@... wrote:

In a message dated 3/10/2006 12:33:54 A.M. Eastern Standard Time,

charlyne1121@... writes:

Lessoned learned the hardway not to sign up for professional development

trainings, like I knew what that meant back then

Now see I am different, I was actually a little disappointed because I

thought wow these are professionals I am sure to learn a lot and sadly that

wasn't the case. About the only thing I got out of this training was that I have

been doing the " right " thing all along. To me most of what was covered was

just plain common sense to me. But of course I have to admit I have done tons

of research over the years and while it doesn't give me a degree it sure

makes it easier to work at home. I agree with Jayne, we spent 45 dollars just

to confirm we knew what we were doing. lol

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

I'm so glad that you and Jayne met up and what a place to attend. I

have attended to one of 's sessions during my rookie years. Now,

with numerous conferencs, workshops, etc. this is exactly where I'm

at, attending with most professionals and always end up being the

only parent. They all know it too and of course towards the end most

have alot of questions to ask me if I ever ask the speakers anything

or what helped my son but then I do not want to step over anyone's

toes but at least they enjoy hearing a parents view.

I can imagine how it went for y'all, how fun but the most important

part of the day, finally got to meet a cyber-family. ; )

Best investment. Thanks guys for sharing your adventurous day.

Irma,17,DS/ASD

>

> It was so awesome meeting Jayne at the workshop today. We didn't

get to sit

> together during the session but we did go out and have lunch

together

> afterwards. She is just as lovely and sweet in person as she is

online. :-) I

> can't wait until May when we will have another chance to meet

again. I know

> when you guys meet with Jayne at the picnic you are just going to

love her!

> After the workshop I think we( I have, don't want to speak for

anyone else)

> have come to the conclusion that we parents need to hold a seminar

for other

> parents and professionals, you know, share what we have learned

over the years.

> All the trial and errors we have gone through, what has and

hasn't worked,

> and maybe even share about how to pace oneself so that burn-out

doesn't

> occur. To share that it's ok to try alternative methods of

working with your

> child's disability but that it is also ok if you chose not to try

alternative

> methods. To remind parents that just because they have faith and

expectations

> for their child does not mean that they are in denial as some

people suggest

> and to recognize when we might indeed be in some form of denial.

Because

> sometimes we can be in denial about some issues and not

necessarily about the

> disability itself. I think that is important to share because it

sure could

> help the stress level for parents just starting down this road a

lot not to

> mention those of us who have been on the path (in my case

sometimes going in

> circles) for awhile now. I'd also like to see parents share how

they make

> homemade items to help with the visuals/sensory because not every

parent can

> afford the cost of some of these items and it would be so good to

have someone

> who they can get ideas or suggestions. It would also be nice to

start a

> lending program for some of these books so that other parents who

may not be able

> to purchase these items could at least borrow them for a spell. I

checked

> our local library and most of the books on special needs that I

need they

> don't carry. Sorry, didn't mean to get on my soapbox and I am

hanging my head

> and climbing off now. It's just that we parents have so much more

to offer

> than I we think we do. We truly are the professionals when you

think about it,

> we may not have a degree in this profession or that one but we

have learned,

> divided and conquered many obstacles to get where we are today and

that in

> and of itself should be enough to give us the title of

professional. :-)

> opps, sorry, just had to get that off my chest before jumping off

the last step

> of the soapbox. :-)

>

>

> Carol

> Trishasmom

> She isn't Typical, She's Trisha!

>

>

>

[Guest guest]

Carol,

I'm definitely behind in responding, but I wanted to

share my thoughts about your " soap box " discussion.

I completely agree about parents being Professionals

in this field. The families that I work with, many

times, don't make themselves heard as far as

advocating for their children. You guys ARE the

experts on the disability, grief process, denial, and

most importantly, therapies. I've been trying to get

the parents in my program to start a

support/information group in our area. I wish they

all could read some of these great, inspirational

posts. I have to say that your thoughts were so

clear, concise, and well articulated.

Kate

--- duffey48@... wrote:

>

> In a message dated 3/10/2006 7:30:13 A.M. Eastern

> Standard Time,

> Csvillars@... writes:

>

> I agree with Jayne, we spent 45 dollars just

> to confirm we knew what we were doing. lol

>

>

> This happens to me when I go too Carol. EXCEPT for

> the Greenspan

> ones....he just intrigues me.

> Donna

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

The student continued and then said rather loudly to the student

> " SHUT

> UP " . the teacher said they were all hysterical, and the student stopped

> .

> unfortunatly only briefly

Viola,

Our kids needs to be able to respond just like any other kid responds. I

had to laugh but at the same time I was so excited to see that he is letting

people know that " their " behavior is bothering him. :-)

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

way to go kyle!! shawna

Re: Meeting with Jayne and my ramblings

>

> Hi Carol,

>

> Just want to tell you I agree with you on that, I want to share a story

> with

> all of you. The other day the teacher told me they had a real Kodak

> moment.

> A student in 's class was making a lot of noise humming, etc. They

> all

> tried to get him to stop as the rest of class was trying to do thier

> work.

> The student continued and then said rather loudly to the student

> " SHUT

> UP " . the teacher said they were all hysterical, and the student stopped

> .

> unfortunatly only briefly, and continued to tell him to shut up,

> they had

> to redirect , but she said it was priceless because said what

> they

> all wanted to but couldn't. Viola:

>

> You know I think that is one thing about our kids that is overlooked so

> much

> and that is giving them the freedom to be just kids and to be able to

> express themselves as kids, not just the way we adults want them to. We

> fight so

> hard for our kids to be accepted like any other child

>

>

>

>

>

>