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In a message dated 1/17/01 7:44:20 AM Eastern Standard Time,

okieleah@... writes:

<< lisa,

there is a test call PEP-R, its a test used to see autistic characteristics

and autism in itself.....it's easy to test and it can be used on nonverbal

kids with some creativity...you could request your school to admininster

this test and if they say no then you could ask for an IEE....indivual

education evaluation...you can pick the person who tests your child...the

school may put a limit on the amount they will pay, but you can almost have

the freedom to your choice.....hope this helps...

>>

Really Leah? Ummm, you really need to move to Elmira! Do you know if your

child is homeschooled, can you get a 1-on-1 aide? I think that is the

direction we are headed with Seth. Seems to me if he needs one in school, he

needs one at home too. :-)

Gail

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gail, i may be crazy but i am not nuts...you couldnt pay me zillions of

dollars to move to elmira...sure i would to be near friends, but the

schools suck and everyone gets cancer....IF AND WHEN i move, it will be to

somewhere that already has successfull schools and community

involvement....IF AND WHEN these programs and priorities exist, i will be

the first to move...but since no place like that exist except in the brains

and dreams of all of us. i am stuck in stafford sucks county va....lmao but

if your serious about an aide at home, let me know.....

>From: smilinggail@...

>Reply-egroups

>egroups

>Subject: Re: lisa

>Date: Wed, 17 Jan 2001 08:06:03 EST

>

>In a message dated 1/17/01 7:44:20 AM Eastern Standard Time,

>okieleah@... writes:

>

><< lisa,

> there is a test call PEP-R, its a test used to see autistic

>characteristics

> and autism in itself.....it's easy to test and it can be used on

>nonverbal

> kids with some creativity...you could request your school to admininster

> this test and if they say no then you could ask for an IEE....indivual

> education evaluation...you can pick the person who tests your child...the

> school may put a limit on the amount they will pay, but you can almost

>have

> the freedom to your choice.....hope this helps...

> >>

>Really Leah? Ummm, you really need to move to Elmira! Do you know if your

>child is homeschooled, can you get a 1-on-1 aide? I think that is the

>direction we are headed with Seth. Seems to me if he needs one in school,

>he

>needs one at home too. :-)

>Gail

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okay doug,

i am stupid on this one...i dont know for sure, i will dig up ashtons papers

and get back to you...this is a test that teachers familiar with autism

should know about, although we understand there are backwardsazzed educators

in every state in every school!!! the school ashton attends is a public

school and her teacher is very familiar with the pep-r///it has many

different testing components and requires time...but its not a sit down

pencil to paper type test...it allows flexibility and some creativity... i

would recommend asking your school is they are pep-r trained... ashtons

teacher went to a two week training and now is certified to train other

teachers.... hope this helps...

>From: Doug <doug.smith@...>

>Reply-egroups

>egroups

>Subject: Re: lisa

>Date: Wed, 17 Jan 2001 09:52:35 -0500

>

>Leah, what do the letters pep-r stand for and is it a school given test?

>by that is it a test a school should be aware of?

>

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  • 3 months later...
Guest guest

Hi

Gee, it's been about a month sinced we've talked to each other. How

have you been? I just wanted to respond to your email regarding

where you thought maybe that the coconut oil in the white M & P

is what made it white. 'Tis not so....it's titanium dioxide

that makes it white. Titanium dioxide is what's used in most

cosmetics as a whitener. Don't ask me what exactly that stuff is

because I've never bothered to research it. Just thought I'd let

you know because if you ever label your soaps and use the white

base, you'll need to list that as an ingredient. Talk to you later.

M

Ilion

Thank you, Colleen!

Dear Colleen,>>They both lather really well, but the white lathers more (don't know why).As for suspension base, they also have it, but I've never used it.<<OK, cool! Thanks so much! I might make an order tomorrow. I wonder if thecoconut oil in the white base is what makes it lather more? Isn't thecoconut what makes it white? I don't know. :-)>>G.-don't know where you get yours, but that's a good one too. (We'veused her soap.)<<I've used her soap, too! And I like it! I have a bar of her "1,001 Nights"soap! :-)Thanks,nne :-) (Albany)Our members maphttp://.homestead.com/locations.htmlOur Message Boardhttp://www.voy.com/21568/Special Invite for membershttp://soapwerks.com/martinrectangle.htmAll posts to this list are copyrighted by post author. They may NOT be forwarded, copied, or used in anyway without the permission of the post author with the exception of answering posts to this list. Posts are personal opinions only.

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  • 5 months later...

> I also recommend the links Kathy posted. I'm not familiar with the

CARS test as was diagnosed by interviewing us and Prof Howlin

observing him. Interesting that you set up your own group, I thought

the DSA had a Liverpool branch. I have found over the last year that

the local Autistic society support group is much more useful to me as

we're struggling with the same issues. The NAS runs a group called

Earlybird for newly diagnosed families which by all accounts is

wonderful, very practical. Maybe you could enquire about it even if

you don't have an official diagnosis. I'm trying to think of what I

would have liked to have known 2 years ago!

> If you (or Lesley) want to call me my number is 0208 348 1474

> Kayte

>

>

>Hi Kayte how are you and ? I have just put to bed

hopefully for the full night. I am a member of the SDSA which I have

found useless,I am interested in finding out about a UK support

group,send any details. s teachers are reading the Disability

Soloutions and seem very interested. [Non-text portions of this

message have been removed]

Lesley,(10).

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  • 8 months later...
Guest guest

Please don't do anything crazy right now you are just going what I am going through and trust me there may seem no help and there is nothing to be done but give them a day progress changes so much in one day they might have something for you. Please don't give up on me now and put up a fight. Remember Youve got to stand for something or youll fall for anything. Stand up for your life and don't let anyone tell you when you are going to live and when you are going to die. You tell them they may only give you an amounted time but you will be here until you are good and ready to leave. And do that don't just say it.

Write back

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Guest guest

, please look out for delivery of a million buckets and sponges to help

with the bailing. I have also ordered you syphon pump to help with the

overflow. I would give you mine but I ned it to often myself. so just keep

bailing and treading water girlfriend. You are not getting out of the Prom

this easy,

Sharon

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  • 1 year later...
Guest guest

Joni,

I hope not! <smile> I almost didn't indicate my blindness on the CI

application because I thought the implant team would count it against me.

However, I changed my mind after my audi told me the same thing you did --

that my blindness may help persuade them that a CI would be an excellent

option for me.

I'm glad to hear you say that they may go on hearing aid history instead.

I've worn super power aids since I was 15 and really don't see the need to

continue trying HAs that don't work. In your case, it must have been

frustrating (if not amusing) because of your deafness. That's like putting

glasses on me and expecting that I'll see. LOL!!

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  • 1 month later...
Guest guest

Joni,

When the CI audi told me the good news, I couldn't believe it!! When I

finally was able to grasp the reality of what was happening and she started

talking about what I could expect from a CI, I couldn't think about anything

else. <smile> Yesterday was definitely a day to remember!! In fact, Friday,

June 11th is the first entry of the CI journal I started writing this

morning. :)

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Guest guest

Congrats ,

Hope the time between evaluation and surgery is a short one and that

everything goes smoothly.

It is exciting to begin thinking in terms of hearing again isn't it?

Hoping for all the best for you.

Hugs,

Silly MI

> Joni,

>

> When the CI audi told me the good news, I couldn't believe it!!

When I

> finally was able to grasp the reality of what was happening and

she started

> talking about what I could expect from a CI, I couldn't think

about anything

> else. <smile> Yesterday was definitely a day to remember!! In

fact, Friday,

> June 11th is the first entry of the CI journal I started writing

this

> morning. :)

>

>

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Guest guest

,

I was on " cloud 9 " yesterday and couldn't think about anything else once the

CI audi told me that I was a candidate. :)

It's such a relief knowing that the first (and hardest) step is behind me.

Now it's time to enjoy the rest of the journey...and look forward to better

days to come! <smile>

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  • 2 weeks later...
Guest guest

Hi Joni,

I haven't seen the surgeon yet. I'm scheduled for an ABR next month and more

speech/hearing tests in August. My CI audi is trying to find out why my left

ear fluctuates between severe to profound loss and profound loss. After

these tests, I will be scheduled to see the surgeon and have a CT scan.

When I see my audi next month, will ask her about bilateral CIs --

especially since the hearing in my right ear has dropped significantly.

If my CI team thinks a bilateral CI is appropriate for me, I will defintely

do it! As someone who is totally blind, a bilateral CI will help

tremendously with sound localization and street crossings.

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  • 5 months later...

Debby-- I think the reason that any one has not been post messages is that they

are trying to get ready for Christmas Eve and Day. They may have family over for

some special and fine times. is doing very well after her surgery and is

now at home; enjoying the opportunity to be pampered.

So Everyone On have a wonderful holidays and enjoy yourselves!!!

Snoopy

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  • 2 years later...

lisatigani wrote:

>Now if I could just myself motivated to

> work out I might be able to incorporate some of your ideas.

lisa, you are just going to have to force yourself to do it.... once

you get going, it will seem more appealing.

you dont have to do a long workout, or a hard one. and you dont

have to do exactly what the instructor is doing or do anything that

you dont want to do. just do something, anything! then you

will feel proud and happy with yourself each day instead of feeling

down on yourself for not trying. believe me, i know how it goes

and i know that it gets to be a vicious circle of self-defeat. i

hate to see you falling into that trap. i know that you can do

this... really, it is mind over body.

:*carolyn.

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In a message dated 1/6/2007 9:49:40 P.M. US Eastern Standard Time, pvisser@... writes:

lisa, you are just going to have to force yourself to do it.... once you get going, it will seem more appealing.

,

I agree with everything Carolyn said. Once you really make yourself do it, it will become easier and you'll want to do it. I think the key is enjoying what you're doing. Find something that is fun, but challenging, and once you get through that challenge you will be proud of yourself and look forward to doing it again.

Good luck to you!

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  • 3 weeks later...

Hi again,

Please e-mail me privately at heather@... with the address

where the dvd was to be sent, and I'll double check with my office...

Thanks,

HRH

Re: Why not cast?

>

>

> I agree with what Shellie said. But also wanted to

> add that many parents are not as dedicated to the

> treatment options like casting that everyone here is.

> Many parents want a one-time fix. If they have to do

> anything with the treatment at home, they'd rather

> not, especially if the doc is not supportive of the

> treatment either. When you have a wishy-washy doc who

> doesn't believe in this 100% and parents who don't

> want to " hinder " or " restrict " their child's body for

> any reason, then you have people voting against serial

> casting. This works with parents of kids who have

> clubfoot issues. Surgery is seen as a one-time fix.

> Serial casting and years of leg braces to " fix " the

> problem are seen as delaying the child's development

> and as " torture " to the child (and parent). Braydon's

> own ortho is not a supporter of casting for very many

> cases because of this situation - he knows parents

> won't take it seriously or that the child will be too

> restricted in development. I'm just stating my

> observation from over the years... one treatment

> option is not right for everyone. That's the benefit

> of having choices. What works for one may not work

> for someone else.

>

> Carmell

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD,

and Braydon 11, VACTERL-congenital scoliosis (fusion surgery 5/96),

VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome

(TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 &

12/06), anal stenosis, chronic constipation, horseshoe (cross-fused)

kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney

reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right

leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04),

tibial torsion, 4cm length discrepancy-wears 3cm lift, pes cavus, SUA,

GERD, Gastroparesis, etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> CongenitalScoliosisSupport/

>

> __________________________________________________________

> Be a PS3 game guru.

> Get your game face on with the latest PS3 news and previews at

Games.

> http://videogames./platform?platform=120121

>

>

>

>

>

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  • 7 months later...

Stuparyk wrote:

> Thanks, Carolyn! You've probably read where I been cleared to walk, at

> least a little.

yes! im so glad to hear that, lisa!

the time that you are taking to rest is working!

> We are heading out of town overnight this weekend, to tour my mother around

> a bit,

cool! where are you going? have fun!

> I'll be picking my HRM up on Friday, too.

so, it took them 3 weeks to put in a new battery? thats a long time

for me to go without my HRM... i hope that i dont need to send mine

away any time soon. did you have to mail it to the USA or is there

a place in Canada?

:*carolyn.

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Sorry, Carolyn. The closest one is London, I think. And I've never even

been in one! So you'll have to check it out and report back.

On our road trip we went down to St. and Port Stanley. My mother

lived there during the war (I hope I'm not repeating myself), and wanted to

see her old houses and haunts. We found both houses, plus the statue of

Jumbo (killed in St. by a train in 1885 - on the SAME DAY WE WERE

THERE!! <insert creepy music here>. We walked along the beach at Port

Stanley for about a half-hour - perfect sand for walking because it had been

packed by rain, but still had some give. Bought some fruit wine from a

nearby winery , explored a corn maze,(both new experiences for us), found an

orchard with juicy apples, plums, and pears, and had a lovely supper in St.

's. Beautiful day, the kids were good, and we all felt refreshed by

being out and about.

in chilly Ontario

Re: lisa

oh! lisa, i meant to ask you... do you have a 'winners' store near

you?

we are getting one in the local mall, and im wondering if they sell

workout dvds cheap.

:*carolyn.

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Oh, missed this part before - we took my hrm back to SportChek where we

bought it, and they were SO good - they sent it out without any fuss. I

don't know where, though I expect it was the States. It didn't really take

a full 3 weeks either - several days of that was just us not being able to

get down to London.

They didn't find anything wrong with it, but replaced the battery just in

case. Didn't cost me a thing, which was a nice surprise.

so, it took them 3 weeks to put in a new battery? thats a long time

for me to go without my HRM... i hope that i dont need to send mine

away any time soon. did you have to mail it to the USA or is there

a place in Canada?

:*carolyn.

No virus found in this outgoing message.

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7:54 PM

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Stuparyk wrote:

> On our road trip we went down to St. and Port Stanley.

hi lisa - i am originally from st thomas... my parents and one of my

brothers still live there. i miss going to port stanley, i have

fond childhood memories of that beach. and my kids love seeing the

big jumbo statue and trying to climb up his legs...lol.

and, gee, if you were in st mary's, you were quite close to where i

live now (around 25 mins away).

sounds like you had a really nice day... im glad that your mom got

to see her old home town.

:*carolyn.

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  • 11 months later...

Hi Kathy

 No im not home yet.. and wont be back with him...im here right now to pick up a

couple things... No hon I dont have your # and see see an e-mail from ya with

it... Thanks so much for all the prayers and support... you and the whole group

mean so much to me.... thanks.... oh by the way... my cell # is 419-30 2-7064...

just in case you would like to chat  thanks,, well gotta get out of here... have

a grea tday... let everyone know im ok...

                             soft hugs

 lisa

---

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Hi Everyone !!!

Well im not home yet,, but im doing so much better all ready.. im fine

and safe.. just wanted to check in... im sorry MIke.. i wont be able

to join chat quite yet...but hopefully soon

Hope ya all's doing good.. i miss ya all...

soft hugs

T

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