Re:

[Guest guest]

Hang in, , know it's rough, sure hoping for you to make it

through this time..

I had to decrease my Ribavirin again; my hemoglobin was dropping again. But we took my 24 week viral count last week. The labs are now being sent to Mayo in Minnesota instead of California so they should be back very soon. I think 1000mg will be okay, since I’m doing the daily Infergen.

This also means that I am 1/3 of the way through the 72 week treatment. Only a year to go….

[Guest guest]

I’m

going to beat this.

From:

Hepatitis_C_Central

[mailto:Hepatitis_C_Central ] On

Behalf Of Sheena

Sent: Monday, September 01, 2008

11:37 AM

To:

Hepatitis_C_Central

Subject: Re:

Hang in, , know it's rough, sure hoping for you to make it

through this time..

I had to

decrease my Ribavirin again; my hemoglobin was dropping again. But we

took my 24 week viral count last week. The labs are now being sent to

Mayo in Minnesota instead of California so they should be back very

soon. I think 1000mg will be okay, since I’m doing the daily

Infergen.

This

also means that I am 1/3 of the way through the 72 week treatment. Only

a year to go….

No

virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.169 / Virus Database: 270.6.14/1645 - Release Date: 9/1/2008 7:19

AM

[Guest guest]

Attitude is better than half the battle, GO, , I'll second that!

I had to decrease my Ribavirin again; my hemoglobin was dropping again. But we took my 24 week viral count last week. The labs are now being sent to Mayo in Minnesota instead of California so they should be back very soon. I think 1000mg will be okay, since I’m doing the daily Infergen.

This also means that I am 1/3 of the way through the 72 week treatment. Only a year to go….

No virus found in this incoming message.Checked by AVG - http://www.avg. comVersion: 8.0.169 / Virus Database: 270.6.14/1645 - Release Date: 9/1/2008 7:19 AM

[Guest guest]

we're sure going to hope so ,, keep up the good work!!!Jackie

I had to decrease my Ribavirin again; my hemoglobin was dropping again. But we took my 24 week viral count last week. The labs are now being sent to Mayo in Minnesota instead of California so they should be back very soon. I think 1000mg will be okay, since I’m doing the daily Infergen.

This also means that I am 1/3 of the way through the 72 week treatment. Only a year to go….

No virus found in this incoming message.Checked by AVG - http://www.avg. comVersion: 8.0.169 / Virus Database: 270.6.14/1645 - Release Date: 9/1/2008 7:19 AM

[Guest guest]

of course you are!!!!

I am 100 %behind ya friend.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

I had to decrease my Ribavirin again; my hemoglobin was dropping again. But we took my 24 week viral count last week. The labs are now being sent to Mayo in Minnesota instead of California so they should be back very soon. I think 1000mg will be okay, since I’m doing the daily Infergen.

This also means that I am 1/3 of the way through the 72 week treatment. Only a year to go….

No virus found in this incoming message.Checked by AVG - http://www.avg. comVersion: 8.0.169 / Virus Database: 270.6.14/1645 - Release Date: 9/1/2008 7:19 AM

[Guest guest]

michael, please have someone post to us and let us know what is going on,, Ihope you'll be ok,, Jackie

Subject: To: "Hep C Central" <Hepatitis_C_Central >Date: Tuesday, September 16, 2008, 3:00 PM

In hospital- more l8r

[Guest guest]

Let us know how things are going when you feel better .

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

Subject: To: "Hep C Central" <Hepatitis_C_Central >Date: Tuesday, September 16, 2008, 5:00 PM

In hospital- more l8r

[Guest guest]

Staci, believe me, you haven't lost the daughter you " used " to have.  She is

the same child, only one who is wracked with fears and obsessions so she can't

be " herself " the way she'd truly love to be if she had the choice.  With proper

treatment for OCD and probably med for the OCD, she will be " herself " again

soon.  Don't give up on your life being as it was, nor on her life being

wonderful and all it could be.  I know it looks bleak right now, but hang in

there!!

Re:

Oh , boy do I understand! Even though our dd's have different

OCD symptoms. I have never cried as much as I have the last 2 weeks -

they have been the hardest weeks yet. The OCD seems to get extra

bad right before her period. Not a good mix when I was very

horomonal with major perimenopause too! ha! =) My biggest fear is

that I never will be able to go away for the weekend again (away from

my kids with my husband) or be sick in bed with the flu myself. She

won't let anyone help her but me. My poor husband and son are just

trying to figure this all out. My dd was also " just fine " and a

happy child and BOOM! Everything changed. I think a lot of my

crying

last week came from mourning the dd I used to have.

You're definitely not alone in this. I'm so glad you got an

appointment fast!

Staci

>

> Thank you and everyone for the warm welcome.

> We scheduled an appointment per the recommmendation of Sinead Ni

with

> Lori for next Thursday (thank you Sinead)

>

> I signed up for this group after an evening of not being a " GREAT

TEAM

> MEMBER " with my daughters OCD.

>

> As a parent dealing with this, I try to help as best I can but I

fight

> so hard for my daughter to be " NORMAL " (which I get is ridiculous)

and

> I sometimes LOSE MY PATIENCE with OCD and become a ranting raving

> lunatic myself.

>

> My daughter has a " germ " issue. She washed compulsively till she

got

> very rough skin and bled. So, I got her into Antibacterial lotion

> (bath and body works) instead. But of course she runs through that

> like water. She began about 5 months ago.... licking herself to

keep

> " clean " . I know it doesn't make real world sense but that helps her

> feel protected against germs. She licks stuff she carries, holds,

> comes in contact with, etc... and the compulsion to lick is

becoming

> very automatic for her. The other day at bed time which is

> particularly difficult for her... she was licking my other

daughters

> comforter

on her bed and my older daughter was saying PLEASE STOP

> LICKING MY THINGS and I snapped. I took keely aside and told her

that

> other people think it's GROSS when she licks their stuff just like

if

> I were to lick her... then I licked her arm and sent her into an

> emotional freak out. There was a lesson in there but it came out of

> anger and witts end sort of reaction...

>

> When you're child is counting on you to understand (which I don't

> usually) and to be on the team that is HELPING... How do you

balance

> your moments of just wanting to SCREAM! AND SHAKE them out of it!

>

> Sometimes it feels like you just want to say STOP IT. For 7 years

> this didn't exist for her and now all of a sudden she can't live

> without it, sometimes feels like you can STOP IT if you want.

(which

> in my logical head I know you can't) But sometimes the emotions take

> over.

> BEEN THERE?

>

>

>

[Guest guest]

I can certainly understand your choice. I have seen what I will have to go through for a transplant and life time care afterwards. Not to mention the financial and emotional roller coaster you jump on. If not for my blessed huband I would not be going through with transplant either. I actually have not really made up my mind about it yet. It depends on what my quality of life will be afterwards. If they destroy my otherwise healthy organs before transplant ....shoot I doubt I'll do it either.

At this point I don't want to close any doors but like you once that transplant door slams shut it will not reopen Its a tough decision to make but I support you 100% in whatever you choose to do {{{{{hugs}}}}}

From: freespirit826 <freespirit826@ yahoo.com>Subject: [Hepatitis_C_ Central] In this aloneTo: Hepatitis_C_ Central@yahoogro ups.comDate: Friday, October 10, 2008, 6:04 PM

I am a 51 year old female. diagnosed with Hep C about 8 years ago. My doctor at the time downplayed it, the levels were very low. For 5 years she kept saying that we would monitor the situation. All of a sudden, my levels skyrocketed. I decided to visit my son's doctor, as he was always very aggressive and open with information. He immediately sent me for a liver biopsy, sonogram, the works. Tests indicated I now have cirrhosis.I was sent to the head of gastroenterology at hospital who cornered me to partake in a study for Teleprevir, in conjunction with PEG-IFN and Ribavirin. He said that they only take 9 people so I had to make a decision RIGHT THEN AND THERE! I was confused, scared, but signed my life away thinking I had to start someplace. I had to sign away my rights, etc etc. They gave me a number for a support group, they never returned my call. Most of the support groups I found online

are no longer in existence.I started the therapy and continued for 4 weeks. All of a sudden, I developed hearing loss. My ears were throbbing with pain. I thought that I had an ear infection, but upon visiting my Dr, there was no infection, no redness, no sinusitis, nothing. He comfirmed this is a side effect to the treatment in about 1% of people. So, I stopped the meds immediately. I am a musician, I could not just sit there while my hearing was slowly deteriorating. When I consulted the Gastro guy at the hospital whe signed me up for this study, he said that he had NEVER heard of anyone having hearing problems in response to the treatment. In the 4 weeks time that I was being treated, they took so much blood from me. But they submitted my blood to the people doing the study. I thought that they would also run their own blood tests, but to my surprise, they didnt. My regular

doctor pointed out that my white blood cells were low, as well as my platelets being EXTREMELY low. I now have an appt with a hemotologist. Im not sure what they are looking for.Since I stopped the meds, my legs are covered with raised rash and my thighs where they gave me the injections are red and sore. I am having difficulty walking.I live alone and have been trying to deal with this while reading whatever I can on the internet. I dont know anyone else who has gone thru this. I have so many questions.1. Why didnt the Gastro Doctor at the hospital know about my blood count?2. Why didnt he know about the hearing loss side effect?3. Why didnt they run their own tests?4. Was I just a specimen for the pharmaceutical industry? They still want me to report back to them for 72 weeks so they can take my blood to complete their study. Should I comply?5. The Gastro

doctor only said two things to me upon my telling him that I stopped the meds.......1. "You have cirrhosis"2. "You can never take these drugs again based on your side effects"Is this true?I am going thru this while maintaining a full time job. My son is in college, so I have to maintain an income.I dont know what I am doing. I dont know what I am supposed to be doing now. sorry for this long postits the weekend..... I have 3 days off, and I know that I will spend the 3 days lying on the couch, tired, not talking to anyone, not leaving the house, not knowing what to do.So, I just curl up in the cave.

[Guest guest]

Thank you . I don't want anyone to think that I have given up , far from it . I will continue to try and treat as long as I can , I just think someone younger would befinit from a new liver more than me .

[Hepatitis_C_ Central] In this aloneTo: Hepatitis_C_ Central@yahoogro ups.comDate: Friday, October 10, 2008, 6:04 PM

I am a 51 year old female. diagnosed with Hep C about 8 years ago. My doctor at the time downplayed it, the levels were very low. For 5 years she kept saying that we would monitor the situation. All of a sudden, my levels skyrocketed. I decided to visit my son's doctor, as he was always very aggressive and open with information. He immediately sent me for a liver biopsy, sonogram, the works. Tests indicated I now have cirrhosis.I was sent to the head of gastroenterology at hospital who cornered me to partake in a study for Teleprevir, in conjunction with PEG-IFN and Ribavirin. He said that they only take 9 people so I had to make a decision RIGHT THEN AND THERE! I was confused, scared, but signed my life away thinking I had to start someplace. I had to sign away my rights, etc etc. They gave me a number for a support group, they never returned my call. Most of the support groups I found online are no longer in existence.I started the therapy and continued for 4 weeks. All of a sudden, I developed hearing loss. My ears were throbbing with pain. I thought that I had an ear infection, but upon visiting my Dr, there was no infection, no redness, no sinusitis, nothing. He comfirmed this is a side effect to the treatment in about 1% of people. So, I stopped the meds immediately. I am a musician, I could not just sit there while my hearing was slowly deteriorating. When I consulted the Gastro guy at the hospital whe signed me up for this study, he said that he had NEVER heard of anyone having hearing problems in response to the treatment. In the 4 weeks time that I was being treated, they took so much blood from me. But they submitted my blood to the people doing the study. I thought that they would also run their own blood tests, but to my surprise, they didnt. My regular doctor pointed out that my white blood cells were low, as well as my platelets being EXTREMELY low. I now have an appt with a hemotologist. Im not sure what they are looking for.Since I stopped the meds, my legs are covered with raised rash and my thighs where they gave me the injections are red and sore. I am having difficulty walking.I live alone and have been trying to deal with this while reading whatever I can on the internet. I dont know anyone else who has gone thru this. I have so many questions.1. Why didnt the Gastro Doctor at the hospital know about my blood count?2. Why didnt he know about the hearing loss side effect?3. Why didnt they run their own tests?4. Was I just a specimen for the pharmaceutical industry? They still want me to report back to them for 72 weeks so they can take my blood to complete their study. Should I comply?5. The Gastro doctor only said two things to me upon my telling him that I stopped the meds.......1. "You have cirrhosis"2. "You can never take these drugs again based on your side effects"Is this true?I am going thru this while maintaining a full time job. My son is in college, so I have to maintain an income.I dont know what I am doing. I dont know what I am supposed to be doing now. sorry for this long postits the weekend..... I have 3 days off, and I know that I will spend the 3 days lying on the couch, tired, not talking to anyone, not leaving the house, not knowing what to do.So, I just curl up in the cave.

[Guest guest]

Mine is, too, hon, would bet many feel the same,

and why we meet here where someone else understands

and cares..

Hugs,

Sheena

I cannot tell you all what a warm fuzzy feeling I get from you all. The help and direction, support, listening to me wine and cry and most of all just being there and listening. ly my family is sick of hearing about HepC and I don't blame them.So thank you all so very much {{{{{{HUG}}} }}> > From: Washburn <gremlin291989@ ...>> Subject: Re: [Hepatitis_C_ Central] Gators> To: Hepatitis_C_ Central@yahoogro ups.com> Date: Monday, October 13, 2008, 5:22 PM> > > They only attack when you do stupid things like leave your pets out at night or swim in their territory. They avoid humans around here and we only go boating in their territory Now March is breeding season so you do have to be on the allert for them. I have a special connection with alligator. When I was younger my Shawoman took me on my first journey to the non ordinary world to find my spirit guide. Oh I was so hoping for bear,

eagle or wolf but what do I get......Alligator LMAO. I hate reptiles! I have learned to love and respect their beauty and behavior but sadly they avoid us so I only have had very brief sightings of them. Its kinda like the silly stories of sharks and once the real truth is known you realize just how stupid people can be.> > > who is afraid people will think she is a real nut case now >

[Guest guest]

What's going on with you, hon, when do you see your Hepatologist again?

I will get you some links gimme a couple of hrs though I just woke up and have terrible shakes ( ammonia back up or I am becoming a diabetic)

[Hepatitis_C_ Central] bloodwork

my labs show absolute neutrophils 1500-7800 cells/uL. mentined 1.8-8 th/mm3. I can get a percentage to see where I am but just wondering what the cells/uL and th/mm3 mean. Sounds like with the CBC all results are related. What levels are extremely low? Anyone know of a book or website explaining blooc cell makeup. I couldn't find anything. WBC is more what I was wondering about. When can you not fight off infection. ThanksDebbie Sorry its raining outside so thought i'd organize lab work __________________________________________________

[Guest guest]

I saw him on Wednesday , he said my biopsy was a stage 3 grade 4 and that there is nothing I can do right now . Except lose all this weight I have put on to reduce the fatty liver and chances of cancer . He said that any treatment is fatal for me now and that I could get as many second opinions as I wanted and they would all say the same . My body just can't tolerate it . So I am going on with my life , dieting and excersing ( from the bed to bathroom lol) . No more good food for me lmao

[Hepatitis_C_ Central] bloodwork

my labs show absolute neutrophils 1500-7800 cells/uL. mentined 1.8-8 th/mm3. I can get a percentage to see where I am but just wondering what the cells/uL and th/mm3 mean. Sounds like with the CBC all results are related. What levels are extremely low? Anyone know of a book or website explaining blooc cell makeup. I couldn't find anything. WBC is more what I was wondering about. When can you not fight off infection. ThanksDebbie Sorry its raining outside so thought i'd organize lab work __________________________________________________

[Guest guest]

Hi ,

You know the same thought went through my mind. did he just not want to get

up, because he liked what he was watching/playing.

Saw the psychiatrist for the first time toady, eh felt it may have been an

issue of being to get out of bed. As lately getting in and out of chairs was

being don't over and over until it felt right. I knew he had trouble getting

into bed, but not out. I'm finding out he's been keeping things to himself.

He starts Lexapro tomorrow, so hopefully things will get better.

Thank you for writing, I hope things improve for your son soon too,

In a message dated 12/8/2008 8:05:01 A.M. Central Standard Time,

RHelinski@... writes:

Just wanted to let you know you are not alone.? My son (now 13) has had

issues with ing on himself as well while watching tv etc.? He has claimed to be

unaware, or just not care.? I have always likened it to a preschooler who is

playing in the sand box who knows they have to go, but is having too much fun

to leave and thinks they can hold it until they can't.? And then once it's

done, oh well....he still doesn't want to leave what he's doing. I think maybe

he has desentized to the feeling over the years?? Or is getting such relief

from his OCD for the moment that he doesn't want to stop the distraction?Just

wanted to let you know you are not alone.? My son (now 13) has had issues

with ing on himself as well while watching tv etc.? He has claimed to be

unaware, or just not care.? I have always likened it to a preschooler who is

playing

in the sand box who knows they have to go, but is having too much fun to

leave and thinks they can hold it until they can't.? And then once it's done,

oh

well....he still doesn't want to leave what he's doing. I think maybe he has

desentized to the feeling over the years?? Or is getting such relief from

his OCD for the moment that he doesn't want to stop the distraction?<WBR>? My

son has had urinary issues on and off since age 6, when he was diagnosed with

PANDAS. Back then, he seemed to " leak " in his underwear, and developed a

compulsion to change underwear 10-12 times a day, and always thought he was wet

even when he wasnt.? Then the nighttime wetting kicked in.? We finally linked

it to medication - no one had told us that the meds could actually

physically increase urinary output. A med change this summer finally changed

all the

urinary issues -

Hang in there!!!? - in MI

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

I didn't know Boxers got DM!

Dear all, I need a rehab facility around burg, PA for a client with a Boxer with probable DM, moderately progressive. Owner has a previous possible diagnosis of multiple T and L disc disease (from films only) that I do not feel is currently problematic. Dog is completely nonpainful and enthusiastic and initially improved dramatically with chiro and acupuncture( probably took care of the remnants of the discs and the neck problem that caused them. I will be seeing the dog concurently to support owner and therapist. Looking forward to working with someone. Judith M. Shoemaker, DVMAlways Helpful Veterinary Services305 Nottingham RoadNottingham, PA 19362ph fax infojudithshoemaker www.judithshoemaker.com

Rediscover Hotmail®: Get quick friend updates right in your inbox. Check it out.

[Guest guest]

I am also treating a boxer with DM.

Pavlakos, PT, CCRP

-----Original Message-----From: VetRehab [mailto:VetRehab ]On Behalf Of Judith ShoemakerSent: Tuesday, April 21, 2009 2:09 PMTo: vetrehab Subject:

Dear all, I need a rehab facility around burg, PA for a client with a Boxer with probable DM, moderately progressive. Owner has a previous possible diagnosis of multiple T and L disc disease (from films only) that I do not feel is currently problematic. Dog is completely nonpainful and enthusiastic and initially improved dramatically with chiro and acupuncture( probably took care of the remnants of the discs and the neck problem that caused them. I will be seeing the dog concurently to support owner and therapist. Looking forward to working with someone. Judith M. Shoemaker, DVMAlways Helpful Veterinary Services305 Nottingham RoadNottingham, PA 19362ph fax infojudithshoemaker www.judithshoemaker.com

Rediscover Hotmail®: Get quick friend updates right in your inbox. Check it out.

[Guest guest]

Rox,

Where

is this independent church named “Believers?” I know allot of people that

would be happy to write some kind, but insightful letters to hopefully get them

to see the light. Education is always a good option.

Please

let us know where we can find this church.

Nolan-6

Phoebe Ds & Cf—4

From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of MIchal

Sent: Monday, August 17, 2009

11:12 AM

To:

DownSyndromeInfoExchange

Subject:

[DownSyndromeInfoExchange]

I am so

sorry to hear of this. I attend our local Baptist church. My son

with Autism has been very accepted in the children's, music and youth

department. I think we just do not let the community know that we are

here and willing to help with their families.

Michal

I would

just like to say churches in general seem to kill their wounded

we were told not to bring our children back to a church

an independent church

named Believers - seeing they did not get healed

guess we were no longer welcome - we had been their 20 years

we are finding church people either ignore the kids or do not want them

around in our area

I do bible time each night with them and prayer time

we also have invested in good bible dvd's

for now that is what i do with them

they also love the bible in song from focus on the family

about wore those cd's out

rox

From: Dinkins-Borkowski

<julieborkowskifamily>

To: DownSyndromeInfoExchange

Sent: Saturday, August 15, 2009 4:28:01 PM

Subject: RE: [DownSyndromeInfoExchange]

Catholic church

You know I do not want to discount any of the bad

experiences you had, but I really hate how everyone is demonizing the Catholic

Church. I think those were bad individuals in your churches that did

that. I am a proud catholic and know of many good Catholic churches that

are not like that at all.

Be careful jumping on some big bandwagon to bash

large church based groups. This is a common tactic used by radicals to

undermind liberty and values from the inside. I am not saying that is

what is happening here. It just has my fir raised.

Nolan-6

Phoebe

Ds & Cf—4

<1.1141746213><2.1141746213><3.1141746213>

<4.1141746213>

<5.1141746213>

From: DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom

eInfoExchange@ yahoogroups. com] On Behalf Of Bonnie

Rich

Sent: Saturday, August 15, 2009 11:07 AM

To: DownSyndromeInfoExc hange@yahoogroup

s.com

Subject: [DownSyndromeInfoEx change] Catholic

church

Unfortunately,

neither of my children go to our Catholic school because of the way I was

treated when I had . She can't even go to PSR/CCD at our

church. I have not even sent her to classes at any other parish yet

because it is still kind of sticking in my craw(is this how you spell

it)?? Anyway there were two nearby parishes that offered spec needs PSR

but now it is only one and there is no way I can get her there at the time

they offer it. But even so, it bothers me that she won't make her first

communion or confirmation at her own parish. My sings a solo

every year at the First Communion at our church and her own sister will never

hear her sing at her communion. OK, I know its petty, its a silly

thing, overall, but I know people that outright left the Catholic church

after they had a child with spec needs. The church just doesn't get

it. For example, this story kind of makes me cry, but had lost

all her hair, facial too, and when I would take her up to communion to a " priest " they

never even gave her a blessing! I'd go to a town carnival or our

own church carnival and the Carny people always gave her stuffed animals,

because I'm pretty sure most everyone thought she had cancer. Don't get

me wrong, it did make me uncomfortable to be stealing sympathy, but my point

is, the priests never gave her a second look-they ignored her like

if they didn't look at her maybe she would disappear. Then our pastor

of only two years, died suddenly of a heart attack, I can't tell you how many

times I had wanted to speak to that man about my disappointment with our

church-but didn't(chicken) , because he went out of his way to ignore my

daughter, OK this is running on. After he died, I found out that

he had had a brother with Ds that died just a year before the pastor

died! His own sister told me how much they all loved their brother with

Ds. I just cried. For the past 5 years I have been the adult

helper with the children's choir. I can't say that I am sorry that

is too old this year, although I will miss the kids. I just don't

get it. I am in a quandary with the church and have been since

was born. I tried to start some kind of support group within our

church for parents of spec needs kids but the pastor didn't let it

happen. I can't even imagine what would happen if I tried to get her in

the school! I'd probably be excommunicated. lol I should just go

to a different parish and probably will now that can join the adult or

contemporary choir somewhere else, but this is the parish my parents and two

of my siblings and families go to, not to mention the parish I have belonged

to since I was 12. I talk tooo much has anyone noticed??

Bonnie from Ohio - SAHM to

13 ADD, ?ODD?, my future star, and

9 Ds, ADD, CHD, GERD, Alopecia Areata, AAI, behavior isssues,

Hypothyroid, some new eye problems and my #1 reason to smile. I'm also Mom to

grown up and on her own, 26 ADD,LDs.

[Guest guest]

We've found the adults to be very loving,, just the kids that treat her like she's invisible.

deb

[DownSyndromeInfoEx change] Catholic church

Unfortunately, neither of my children go to our Catholic school because of the way I was treated when I had . She can't even go to PSR/CCD at our church. I have not even sent her to classes at any other parish yet because it is still kind of sticking in my craw(is this how you spell it)?? Anyway there were two nearby parishes that offered spec needs PSR but now it is only one and there is no way I can get her there at the time they offer it. But even so, it bothers me that she won't make her first communion or confirmation at her own parish. My sings a solo every year at the First Communion at our church and her own sister will never hear her sing at her communion. OK, I know its petty, its a silly thing, overall, but I know people that outright left the Catholic church after they had a child with spec needs. The church just doesn't get it. For example, this story kind of makes me cry, but had lost all her hair, facial too, and when I would take her up to communion to a "priest" they never even gave her a blessing! I'd go to a town carnival or our own church carnival and the Carny people always gave her stuffed animals, because I'm pretty sure most everyone thought she had cancer. Don't get me wrong, it did make me uncomfortable to be stealing sympathy, but my point is, the priests never gave her a second look-they ignored her like if they didn't look at her maybe she would disappear. Then our pastor of only two years, died suddenly of a heart attack, I can't tell you how many times I had wanted to speak to that man about my disappointment with our church-but didn't(chicken) , because he went out of his way to ignore my daughter, OK this is running on. After he died, I found out that he had had a brother with Ds that died just a year before the pastor died! His own sister told me how much they all loved their brother with Ds. I just cried. For the past 5 years I have been the adult helper with the children's choir. I can't say that I am sorry that is too old this year, although I will miss the kids. I just don't get it. I am in a quandary with the church and have been since was born. I tried to start some kind of support group within our church for parents of spec needs kids but the pastor didn't let it happen. I can't even imagine what would happen if I tried to get her in the school! I'd probably be excommunicated. lol I should just go to a different parish and probably will now that can join the adult or contemporary choir somewhere else, but this is the parish my parents and two of my siblings and families go to, not to mention the parish I have belonged to since I was 12. I talk tooo much has anyone noticed??

Bonnie from Ohio - SAHM to 13 ADD, ?ODD?, my future star, and 9 Ds, ADD, CHD, GERD, Alopecia Areata, AAI, behavior isssues, Hypothyroid, some new eye problems and my #1 reason to smile. I'm also Mom to grown up and on her own, 26 ADD,LDs.

[Guest guest]

Rox, that is very sad. I would have to say these people are not true Christians. What - your children were prayed for and the people who did the praying didn't instantly get the results they wanted? So now your children make them look bad??? What would Jesus say to these people? Do they think they have more power than He does? That's pitiful. 18:15-17 says “If another believer sins against you, go privately and point out the offense. If the other person listens and confesses it, you have won that person back. But

if you are unsuccessful, take one or two others with you and go back

again, so that everything you say may be confirmed by two or three

witnesses. If

the person still refuses to listen, take your case to the church. Then

if he or she won’t accept the church’s decision, treat that person as a

pagan or a corrupt tax collector. " - I would go before the entire church and tell them what you were told. Every member there needs to know what type of church they're really attending. I don't mean to judge these people, but I really don't think they are truly seeking Jesus.

When Tristan was born, we had just started attending a different church. He was in the hospital for 10 days, and people from that church went to the hospital (which was 30 minutes away) every single day, even after I was discharged. The nurses were so impressed. Every Sunday, a group of people would gather round us to see him and love him. They called it " Tristan 101. " However, we have encountered people who are not so loving - both in church and out. Some people are so misguided.

Shari

 

Rox,

 

Where

is this independent church named “Believers?”  I know allot of people that

would be happy to write some kind, but insightful letters to hopefully get them

to see the light.  Education is always a good option.

 

Please

let us know where we can find this church.

 

    

     Nolan-6

     Phoebe Ds & Cf—4

 

From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of MIchal

Sent: Monday, August 17, 2009

11:12 AM

To:

DownSyndromeInfoExchange

Subject:

[DownSyndromeInfoExchange]

 

 

I am so

sorry to hear of this.   I attend our local Baptist church.  My son

with Autism has been very accepted in the children's, music and youth

department.   I think we just do not let the community know that we are

here and willing to help with their families.  

Michal

I would

just like to say churches in general seem to kill their wounded

we were told not to bring our children back to a church 

an independent church 

named Believers -  seeing they did not get healed 

guess we were no longer welcome - we had been their 20 years

we are finding church people either ignore the kids or do not want them

around in our area 

I do bible time each night with them and prayer time 

we also have invested in good bible dvd's 

for now that is what i do with them

they also love the bible in song from focus on the family

about wore those cd's out

rox

 

From:  Dinkins-Borkowski

To: DownSyndromeInfoExchange

Sent: Saturday, August 15, 2009 4:28:01 PM

Subject: RE: [DownSyndromeInfoExchange]

Catholic church

 

You know I do not want to discount any of the bad

experiences you had, but I really hate how everyone is demonizing the Catholic

Church.  I think those were bad individuals in your churches that did

that.  I am a proud catholic and know of many good Catholic churches that

are not like that at all.

 

Be careful jumping on some big bandwagon to bash

large church based groups.  This is a common tactic used by radicals to

undermind liberty and values from the inside.  I am not saying that is

what is happening here.  It just has my fir raised.

 

    

     Nolan-6

     Phoebe

Ds & Cf—4

<1.1141746213><2.1141746213><3.1141746213>

<4.1141746213>

<5.1141746213>

 

From: DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom

eInfoExchange@ yahoogroups. com] On Behalf Of Bonnie

Rich

Sent: Saturday, August 15, 2009 11:07 AM

To: DownSyndromeInfoExc hange@yahoogroup

s.com

Subject: [DownSyndromeInfoEx change] Catholic

church

 

 

Unfortunately,

neither of my children go to our Catholic school because of the way I was

treated when I had .  She can't even go to PSR/CCD at our

church.  I have not even sent her to classes at any other parish yet

because it is still kind of sticking in my craw(is this how you spell

it)??  Anyway there were two nearby parishes that offered spec needs PSR

but now it is only one and there is no way I can get her there at the time

they offer it.  But even so, it bothers me that she won't make her first

communion or confirmation at her own parish.  My sings a solo

every year at the First Communion at our church and her own sister will never

hear her sing at her communion.  OK, I know its petty, its a silly

thing, overall, but I know people that outright left the Catholic church

after they had a child with spec needs.  The church just doesn't get

it.  For example, this story kind of makes me cry, but had lost

all her hair, facial too, and when I would take her up to communion to a " priest "  they

never even gave her a blessing!   I'd go to a town carnival or our

own church carnival and the Carny people always gave her stuffed animals,

because I'm pretty sure most everyone thought she had cancer.  Don't get

me wrong, it did make me uncomfortable to be stealing sympathy, but my point

is, the priests never gave her a second look-they ignored her like

if they didn't look at her maybe she would disappear.  Then our pastor

of only two years, died suddenly of a heart attack, I can't tell you how many

times I had wanted to speak to that man about my disappointment with our

church-but didn't(chicken) , because he went out of his way to ignore my

daughter,  OK this is running on.  After he died, I found out that

he had had a brother with Ds that died just a year before the pastor

died!  His own sister told me how much they all loved their brother with

Ds.  I just cried.  For the past 5 years I have been the adult

helper with the children's choir.  I can't say that I am sorry that

is too old this year, although I will miss the kids.  I just don't

get it.  I am in a quandary with the church and have been since

was born.  I tried to start some kind of support group within our

church for parents of spec needs kids but the pastor didn't let it

happen.  I can't even imagine what would happen if I tried to get her in

the school!  I'd probably be excommunicated. lol  I should just go

to a different parish and probably will now that can join the adult or

contemporary choir somewhere else, but this is the parish my parents and two

of my siblings and families go to, not to mention the parish I have belonged

to since I was 12.  I talk tooo much has anyone noticed??

 

Bonnie from Ohio - SAHM to

13 ADD, ?ODD?, my future star, and 

9 Ds, ADD, CHD, GERD, Alopecia Areata, AAI, behavior isssues,

Hypothyroid, some new eye problems and my #1 reason to smile. I'm also Mom to

grown up and on her own, 26 ADD,LDs.

 

[Guest guest]

the church has had many problemsand split then they let the pastor gofor after some money went missingthey are in another split situation againwe left long ago - been 3 years or sotook us awhile but found a baptist churchwe attend one sunday for 20 minutesthat wednesday annie was admitted foran illus her intestines shut downand the pastor came up that night blew me away and prayed with usnot once did he tell me my sins caused her to be sick and if I would only get my act together shewould be healed - when she was admitted to ICU at thanksgiving time he came right up - very supportivecame to the care meetings ect - this church has been a haven - they grew so muchthat now they hold services in a school its not safe for

my special needs kids - we had one almost get away from the class without anyone knowingand fortunately he ran into myself and his older brotheras he was coming out the door - once they get there new building it should be better roxTo: DownSyndromeInfoExchange@...Sent: Tuesday, August 18, 2009 10:01:33 PMSubject: Re: [DownSyndromeInfoExchange]

Rox, that is very sad. I would have to say these people are not true Christians. What - your children were prayed for and the people who did the praying didn't instantly get the results they wanted? So now your children make them look bad??? What would Jesus say to these people? Do they think they have more power than He does? That's pitiful. 18:15-17 says “If another believer sins against you, go privately and point out the offense. If the other person listens and confesses it, you have won that person back. But

if you are unsuccessful, take one or two others with you and go back

again, so that everything you say may be confirmed by two or three

witnesses. If

the person still refuses to listen, take your case to the church. Then

if he or she won’t accept the church’s decision, treat that person as a

pagan or a corrupt tax collector." - I would go before the entire church and tell them what you were told. Every member there needs to know what type of church they're really attending. I don't mean to judge these people, but I really don't think they are truly seeking Jesus.

When Tristan was born, we had just started attending a different church. He was in the hospital for 10 days, and people from that church went to the hospital (which was 30 minutes away) every single day, even after I was discharged. The nurses were so impressed. Every Sunday, a group of people would gather round us to see him and love him. They called it "Tristan 101." However, we have encountered people who are not so loving - both in church and out. Some people are so misguided.

Shari On Mon, Aug 17, 2009 at 12:25 PM, Dinkins-Borkowski <julie@borkowskifami ly.com> wrote:

Rox,

Where

is this independent church named “Believers?†I know allot of people that

would be happy to write some kind, but insightful letters to hopefully get them

to see the light. Education is always a good option.

Please

let us know where we can find this church.

Nolan-6

Phoebe Ds & Cf—4

From:

DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndromeInfoExc hange@yahoogroup s.com]

On Behalf Of MIchal

Sent: Monday, August 17, 2009

11:12 AM

To:

DownSyndromeInfoExc hange@yahoogroup s.com

Subject:

[DownSyndromeInfoEx change]

I am so

sorry to hear of this. I attend our local Baptist church. My son

with Autism has been very accepted in the children's, music and youth

department. I think we just do not let the community know that we are

here and willing to help with their families.

Michal

I would

just like to say churches in general seem to kill their wounded

we were told not to bring our children back to a church

an independent church

named Believers - seeing they did not get healed

guess we were no longer welcome - we had been their 20 years

we are finding church people either ignore the kids or do not want them

around in our area

I do bible time each night with them and prayer time

we also have invested in good bible dvd's

for now that is what i do with them

they also love the bible in song from focus on the family

about wore those cd's out

rox

From: Dinkins-Borkowski

<julie@borkowskifami ly.com>

To: DownSyndromeInfoExc hange@yahoogroup s.com

Sent: Saturday, August 15, 2009 4:28:01 PM

Subject: RE: [DownSyndromeInfoEx change]

Catholic church

You know I do not want to discount any of the bad

experiences you had, but I really hate how everyone is demonizing the Catholic

Church. I think those were bad individuals in your churches that did

that. I am a proud catholic and know of many good Catholic churches that

are not like that at all.

Be careful jumping on some big bandwagon to bash

large church based groups. This is a common tactic used by radicals to

undermind liberty and values from the inside. I am not saying that is

what is happening here. It just has my fir raised.

Nolan-6

Phoebe

Ds & Cf—4

<1.1141746213><2.1141746213><3.1141746213>

<4.1141746213>

<5.1141746213>

From: DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom

eInfoExchange@ yahoogroups. com] On Behalf Of Bonnie

Rich

Sent: Saturday, August 15, 2009 11:07 AM

To: DownSyndromeInfoExc hange@yahoogroup

s.com

Subject: [DownSyndromeInfoEx change] Catholic

church

Unfortunately,

neither of my children go to our Catholic school because of the way I was

treated when I had . She can't even go to PSR/CCD at our

church. I have not even sent her to classes at any other parish yet

because it is still kind of sticking in my craw(is this how you spell

it)?? Anyway there were two nearby parishes that offered spec needs PSR

but now it is only one and there is no way I can get her there at the time

they offer it. But even so, it bothers me that she won't make her first

communion or confirmation at her own parish. My sings a solo

every year at the First Communion at our church and her own sister will never

hear her sing at her communion. OK, I know its petty, its a silly

thing, overall, but I know people that outright left the Catholic church

after they had a child with spec needs.. The church just doesn't get

it. For example, this story kind of makes me cry, but had lost

all her hair, facial too, and when I would take her up to communion to a "priest" they

never even gave her a blessing! I'd go to a town carnival or our

own church carnival and the Carny people always gave her stuffed animals,

because I'm pretty sure most everyone thought she had cancer. Don't get

me wrong, it did make me uncomfortable to be stealing sympathy, but my point

is, the priests never gave her a second look-they ignored her like

if they didn't look at her maybe she would disappear. Then our pastor

of only two years, died suddenly of a heart attack, I can't tell you how many

times I had wanted to speak to that man about my disappointment with our

church-but didn't(chicken) , because he went out of his way to ignore my

daughter, OK this is running on. After he died, I found out that

he had had a brother with Ds that died just a year before the pastor

died! His own sister told me how much they all loved their brother with

Ds. I just cried. For the past 5 years I have been the adult

helper with the children's choir. I can't say that I am sorry that

is too old this year, although I will miss the kids. I just don't

get it. I am in a quandary with the church and have been since

was born.. I tried to start some kind of support group within our

church for parents of spec needs kids but the pastor didn't let it

happen. I can't even imagine what would happen if I tried to get her in

the school! I'd probably be excommunicated. lol I should just go

to a different parish and probably will now that can join the adult or

contemporary choir somewhere else, but this is the parish my parents and two

of my siblings and families go to, not to mention the parish I have belonged

to since I was 12. I talk tooo much has anyone noticed??

Bonnie from Ohio - SAHM to

13 ADD, ?ODD?, my future star, and

9 Ds, ADD, CHD, GERD, Alopecia Areata, AAI, behavior isssues,

Hypothyroid, some new eye problems and my #1 reason to smile. I'm also Mom to

grown up and on her own, 26 ADD,LDs.

[Guest guest]

Does

your daughter take her shoes off at home?

Nolan-6

Phoebe Ds & Cf—4

If my ship sails from

sight, it doesn't mean my journey ends, it simply means the river bends. - Enoch

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of jhunter5431@...

Sent: Thursday, December 17, 2009

9:31 PM

To: DownSyndromeInfoExchange

Subject:

[DownSyndromeInfoExchange]

I would

like everyone's opinions on this following issue:

This morning while I put my 3 yr. old daughter on the school bus, I found out

that she is once again taking off her shoes and socks. The monitor will put

them on her but she continues to take them off. Today the monitor said when

they get to school, the teachers aide gets her of bus and has her walk into

school without shoes and socks on. I called bus transportation and was told

that once the bus is at school the teachers are in charge.

I contacted her dad and discussed it with him. Right after that, the school

called me as bus transportation contacted them regarding this. I talked to the

Special Ed. Coordinator and she was sorry that this had happened and that she

questioned the teacher and it had happened only 1 time. I asked her to arrange

a meeting and she said it could take place before the Christmas party or after

but she didn't want the teacher " rattled " since she had an afternoon

class to teach. They had no issues with me and my husband being rattled. My

husband parked his semi in a parking lot and we went to the meeting. We met

first with the Sp Ed Coordinator and she apologized and said that this never

should have happened. We told her that we were going to record the meeting and

all that was said would be on record. We then found out that this occured not

once, not twice, but 3 times in extreme cold weather (one morning it was 15

degrees).!! The teacher was then brought in with another employee and we were

told we were not allowed to record the meeting that we had to go to CEO for

permission. The teacher apologized and said it would not happen again. This is

all that was said.

My question to you all, we are not satisified with the outcome of this meeting,

no disciplinary action was taken against this teacher, at that time, and we

were told that it is not our business how they discipline the teachers. Should

we go the police or attorney for child endangerment? We feel that the school is

just cover it up and put it under the rug.

What would you do if this was your child?

[Guest guest]

Yes. she's barefooted 99% of the time as we don't not allow shoes in the house.

we when go out she usually takes them off in the car too and we have been

working with her to keep them on. If we distract her she will keep them on and

if not we talk to her about it and then put them on her. I send her to school

with velcro shoes as it's easier to put them on than tied shoes.

---- Dinkins-Borkowski wrote:

> Does your daughter take her shoes off at home?

>

>

>

>

>

> Nolan-6

>

> Phoebe Ds & Cf-4

>

>

>

> If my ship sails from sight, it doesn't mean my journey ends, it simply

> means the river bends. - Enoch

>

>

>

>

>

>

> Lipstick

>

>

>

>

>

> _____

>

> From: DownSyndromeInfoExchange

> [mailto:DownSyndromeInfoExchange ] On Behalf Of

> jhunter5431@...

> Sent: Thursday, December 17, 2009 9:31 PM

> To: DownSyndromeInfoExchange

> Subject: [DownSyndromeInfoExchange]

>

>

>

>

>

> I would like everyone's opinions on this following issue:

> This morning while I put my 3 yr. old daughter on the school bus, I found

> out that she is once again taking off her shoes and socks. The monitor will

> put them on her but she continues to take them off. Today the monitor said

> when they get to school, the teachers aide gets her of bus and has her walk

> into school without shoes and socks on. I called bus transportation and was

> told that once the bus is at school the teachers are in charge.

> I contacted her dad and discussed it with him. Right after that, the school

> called me as bus transportation contacted them regarding this. I talked to

> the Special Ed. Coordinator and she was sorry that this had happened and

> that she questioned the teacher and it had happened only 1 time. I asked her

> to arrange a meeting and she said it could take place before the Christmas

> party or after but she didn't want the teacher " rattled " since she had an

> afternoon class to teach. They had no issues with me and my husband being

> rattled. My husband parked his semi in a parking lot and we went to the

> meeting. We met first with the Sp Ed Coordinator and she apologized and said

> that this never should have happened. We told her that we were going to

> record the meeting and all that was said would be on record. We then found

> out that this occured not once, not twice, but 3 times in extreme cold

> weather (one morning it was 15 degrees).!! The teacher was then brought in

> with another employee and we were told we were not allowed to record the

> meeting that we had to go to CEO for permission. The teacher apologized and

> said it would not happen again. This is all that was said.

>

> My question to you all, we are not satisified with the outcome of this

> meeting, no disciplinary action was taken against this teacher, at that

> time, and we were told that it is not our business how they discipline the

> teachers. Should we go the police or attorney for child endangerment? We

> feel that the school is just cover it up and put it under the rug.

>

> What would you do if this was your child?

>

>

>

[Guest guest]

it could also be a sensory thing..when Danny was a toddler, he rarely kept his shoes on (he still prefers to not wear shoes in the house, but then, so do I;-)I would put his shoes on  him when we went somewhere, and by the time I got him in his car seat and got in the van myself, he would have his shoes and socks off..he also wouldnt leave a hat on. I don't remember how old he was when he started leaving his shoes on, but I know he was older than 3.

He wasn't taking his shoes off to misbehave, he just truly couldn't tolerate having them on for very long then.and I would be very upset if the people at the school made him walk into school barefoot..sounds like they are punishing your daughter for something she really has no control over..seems to me it would be a lot better to work on getting her to wear her shoes and reward her when she is able to keep them on rather than punish her when she doesn't.

How did they know she wouldnt step on something and hurt her feet when she was walking in barefoot? How can they justify letting a child be barefoot in 15 degree weather? what always bugs me about situations like this is that if YOU had sent her to school with no shoes, or if you made her walk outside in the cold without shoes in cold weather (or even on school grounds) they would have sicced Child Protective Services on you..but somehow, when

'the school' does stuff like that, it is considered reasonable behavior.why couldn't they just take a couple of minutes to put her shoes back on her before she got off the bus? what is so hard about that?

KathyR

 

Yes. she's barefooted 99% of the time as we don't not allow shoes in the house. we when go out she usually takes them off in the car too and we have been working with her to keep them on. If we distract her she will keep them on and if not we talk to her about it and then put them on her. I send her to school with velcro shoes as it's easier to put them on than tied shoes.

---- Dinkins-Borkowski wrote:

> Does your daughter take her shoes off at home?

>

>

>

>

>

> Nolan-6

>

> Phoebe Ds & Cf-4

>

>

>

> If my ship sails from sight, it doesn't mean my journey ends, it simply

> means the river bends. - Enoch

>

>

>

>

>

>

> Lipstick

>

>

>

>

>

> _____

>

> From: DownSyndromeInfoExchange

> [mailto:DownSyndromeInfoExchange ] On Behalf Of

> jhunter5431@...

> Sent: Thursday, December 17, 2009 9:31 PM

> To: DownSyndromeInfoExchange

> Subject: [DownSyndromeInfoExchange]

>

>

>

>

>

> I would like everyone's opinions on this following issue:

> This morning while I put my 3 yr. old daughter on the school bus, I found

> out that she is once again taking off her shoes and socks. The monitor will

> put them on her but she continues to take them off. Today the monitor said

> when they get to school, the teachers aide gets her of bus and has her walk

> into school without shoes and socks on. I called bus transportation and was

> told that once the bus is at school the teachers are in charge.

> I contacted her dad and discussed it with him. Right after that, the school

> called me as bus transportation contacted them regarding this. I talked to

> the Special Ed. Coordinator and she was sorry that this had happened and

> that she questioned the teacher and it had happened only 1 time. I asked her

> to arrange a meeting and she said it could take place before the Christmas

> party or after but she didn't want the teacher " rattled " since she had an

> afternoon class to teach. They had no issues with me and my husband being

> rattled. My husband parked his semi in a parking lot and we went to the

> meeting. We met first with the Sp Ed Coordinator and she apologized and said

> that this never should have happened. We told her that we were going to

> record the meeting and all that was said would be on record. We then found

> out that this occured not once, not twice, but 3 times in extreme cold

> weather (one morning it was 15 degrees).!! The teacher was then brought in

> with another employee and we were told we were not allowed to record the

> meeting that we had to go to CEO for permission. The teacher apologized and

> said it would not happen again. This is all that was said.

>

> My question to you all, we are not satisified with the outcome of this

> meeting, no disciplinary action was taken against this teacher, at that

> time, and we were told that it is not our business how they discipline the

> teachers. Should we go the police or attorney for child endangerment? We

> feel that the school is just cover it up and put it under the rug.

>

> What would you do if this was your child?

>

>

>

[Guest guest]

You guys all have very good points and I, too, would probably be upset if this were my child. But, I have to say my first thought when I read this was that it sounded like what I would do and actually do with my kids. Not trying to punish them but.... Honestly, in my mind I'm just thinking shortest distance between two points. I know, most parents first thought is cold feet. But for myself, I would just get out of my van and quickly walk to the house rather than taking the time to put on my shoes. Maybe the teacher really wasn't trying to punish maybe it was just "hey, lets get inside and then worry about getting into your shoes". Rubyit could also be a sensory thing..when Danny was a toddler, he rarely kept his shoes on (he still prefers to not wear shoes in the house, but then, so do I;-)I would put his shoes on him when we went somewhere, and by the time I got him in his car seat and got in the van myself, he would have his shoes and socks off..he also wouldnt leave a hat on. I don't remember how old he was when he started leaving his shoes on, but I know he was older than 3.He wasn't taking his shoes off to misbehave, he just truly couldn't tolerate having them on for very long then.and I would be very upset if the people at the school made him walk into school barefoot..sounds like they are punishing your daughter for something she really has no control over..seems to me it would be a lot better to work on getting her to wear her shoes and reward her when she is able to keep them on rather than punish her when she doesn't.How did they know she wouldnt step on something and hurt her feet when she was walking in barefoot? How can they justify letting a child be barefoot in 15 degree weather? what always bugs me about situations like this is that if YOU had sent her to school with no shoes, or if you made her walk outside in the cold without shoes in cold weather (or even on school grounds) they would have sicced Child Protective Services on you..but somehow, when 'the school' does stuff like that, it is considered reasonable behavior.why couldn't they just take a couple of minutes to put her shoes back on her before she got off the bus? what is so hard about that? KathyROn Thu, Dec 17, 2009 at 11:06 PM, <jhunter5431charter (DOT) net> wrote: Yes. she's barefooted 99% of the time as we don't not allow shoes in the house. we when go out she usually takes them off in the car too and we have been working with her to keep them on. If we distract her she will keep them on and if not we talk to her about it and then put them on her. I send her to school with velcro shoes as it's easier to put them on than tied shoes. ---- Dinkins-Borkowski <julieborkowskifamily> wrote: > Does your daughter take her shoes off at home?> > > > > > Nolan-6> > Phoebe Ds & Cf-4> > > > If my ship sails from sight, it doesn't mean my journey ends, it simply> means the river bends. - Enoch > > > > > > > Lipstick> > > > > > _____ > > From: DownSyndromeInfoExchange > [mailto:DownSyndromeInfoExchange ] On Behalf Of> jhunter5431charter (DOT) net> Sent: Thursday, December 17, 2009 9:31 PM> To: DownSyndromeInfoExchange > Subject: [DownSyndromeInfoExchange] > > > > > > I would like everyone's opinions on this following issue:> This morning while I put my 3 yr. old daughter on the school bus, I found> out that she is once again taking off her shoes and socks. The monitor will> put them on her but she continues to take them off. Today the monitor said> when they get to school, the teachers aide gets her of bus and has her walk> into school without shoes and socks on. I called bus transportation and was> told that once the bus is at school the teachers are in charge. > I contacted her dad and discussed it with him. Right after that, the school> called me as bus transportation contacted them regarding this. I talked to> the Special Ed. Coordinator and she was sorry that this had happened and> that she questioned the teacher and it had happened only 1 time. I asked her> to arrange a meeting and she said it could take place before the Christmas> party or after but she didn't want the teacher "rattled" since she had an> afternoon class to teach. They had no issues with me and my husband being> rattled. My husband parked his semi in a parking lot and we went to the> meeting. We met first with the Sp Ed Coordinator and she apologized and said> that this never should have happened. We told her that we were going to> record the meeting and all that was said would be on record. We then found> out that this occured not once, not twice, but 3 times in extreme cold> weather (one morning it was 15 degrees).!! The teacher was then brought in> with another employee and we were told we were not allowed to record the> meeting that we had to go to CEO for permission. The teacher apologized and> said it would not happen again. This is all that was said. > > My question to you all, we are not satisified with the outcome of this> meeting, no disciplinary action was taken against this teacher, at that> time, and we were told that it is not our business how they discipline the> teachers. Should we go the police or attorney for child endangerment? We> feel that the school is just cover it up and put it under the rug. > > What would you do if this was your child?> > > =

[Guest guest]

Do you

think maybe they carry her instead of making her walk? Just a thought.

Nolan-6

Phoebe Ds & Cf—4

If my ship sails from

sight, it doesn't mean my journey ends, it simply means the river bends. - Enoch

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of jhunter5431@...

Sent: Thursday, December 17, 2009

10:06 PM

To: DownSyndromeInfoExchange

Cc: Dinkins-Borkowski

Subject: RE:

[DownSyndromeInfoExchange]

Yes. she's barefooted 99% of the time as we don't not

allow shoes in the house. we when go out she usually takes them off in the car

too and we have been working with her to keep them on. If we distract her she

will keep them on and if not we talk to her about it and then put them on her.

I send her to school with velcro shoes as it's easier to put them on than tied

shoes.

---- Dinkins-Borkowski <julieborkowskifamily>

wrote:

> Does your daughter take her shoes off at home?

>

>

>

>

>

> Nolan-6

>

> Phoebe Ds & Cf-4

>

>

>

> If my ship sails from sight, it doesn't mean my journey ends, it simply

> means the river bends. - Enoch

>

>

>

>

>

>

> Lipstick

>

>

>

>

>

> _____

>

> From: DownSyndromeInfoExchange

> [mailto:DownSyndromeInfoExchange ]

On Behalf Of

> jhunter5431charter (DOT) net

> Sent: Thursday, December 17, 2009 9:31 PM

> To: DownSyndromeInfoExchange

> Subject: [DownSyndromeInfoExchange]

>

>

>

>

>

> I would like everyone's opinions on this following issue:

> This morning while I put my 3 yr. old daughter on the school bus, I found

> out that she is once again taking off her shoes and socks. The monitor

will

> put them on her but she continues to take them off. Today the monitor said

> when they get to school, the teachers aide gets her of bus and has her

walk

> into school without shoes and socks on. I called bus transportation and

was

> told that once the bus is at school the teachers are in charge.

> I contacted her dad and discussed it with him. Right after that, the

school

> called me as bus transportation contacted them regarding this. I talked to

> the Special Ed. Coordinator and she was sorry that this had happened and

> that she questioned the teacher and it had happened only 1 time. I asked

her

> to arrange a meeting and she said it could take place before the Christmas

> party or after but she didn't want the teacher " rattled " since

she had an

> afternoon class to teach. They had no issues with me and my husband being

> rattled. My husband parked his semi in a parking lot and we went to the

> meeting. We met first with the Sp Ed Coordinator and she apologized and

said

> that this never should have happened. We told her that we were going to

> record the meeting and all that was said would be on record. We then found

> out that this occured not once, not twice, but 3 times in extreme cold

> weather (one morning it was 15 degrees).!! The teacher was then brought in

> with another employee and we were told we were not allowed to record the

> meeting that we had to go to CEO for permission. The teacher apologized

and

> said it would not happen again. This is all that was said.

>

> My question to you all, we are not satisified with the outcome of this

> meeting, no disciplinary action was taken against this teacher, at that

> time, and we were told that it is not our business how they discipline the

> teachers. Should we go the police or attorney for child endangerment? We

> feel that the school is just cover it up and put it under the rug.

>

> What would you do if this was your child?

>

>

>