RE: Digest Number 2150

[Guest guest]

Hi Cindi,

My heart was very deeply touched with sorrow as I read your post telling us of your loss of Grace. My deepest sympathy to you and your family. Please know that you may post here whenever you want to. There are two families I know who still post here who each lost a child. Thank you for thinking of all of us. We will be here for you when you need support.

Marcia

Mom to Sara (DS) and 11 and Lucas 15

[Guest guest]

Hello fellow moms,

This is Cindi in SC....I have not written for quite some time, and I am

devastated to tell you this will be my last post. In early June my daughter

Grace (a triplet with Down syndrome) was diagnosed with leukemia. Within a week

of her diagnosis her immune system dropped (from both the cancer and the

treatment), and she contracted a serious infection. She was in the ICU for 5

weeks, and fought like a trouper as each system in her little body was attacked.

Ultimately it proved too great a battle for her, and she passed away on July

16th.

You all have been a tremendous source of encouragement, inspiration, and

information for me during Grace's three short years. I thank all of you for

your wisdom and willingness to share your experiences. Though I did not post

often, I read every note, and so appreciated all warmth, comfort, and support

from this listserv. I know that each of you can imagine our sorrow, as having a

child with Down syndrome is incredibly special, but to also have a child who is

a multiple is quite unique. Grace's four siblings feel her loss every day, but

her triplet sister is especially overwhelmed by her absence. I know the daily

challenges and struggles you all face having a child with special needs, and

having multiples (or multiple children with special needs)...but today and

always I will be envious of those challenges as the silence is much more

difficult. I will continue working in ton to improve the opportunities

for children with Ds, especially in schools, so if any of you have information

on inclusion (or want information from me), please don't hesitate to share.

I will always think of you when I remember my Gracie.

Cindi in SC

mom to Tom and (twins, age 7) and Sam, Grace (Ds) and Lily (triplets, age

3)

________________________________

From: Multiples-DS [mailto:Multiples-DS ]

Sent: Sat 7/29/2006 4:56 AM

To: Multiples-DS

Subject: Digest Number 2150

The *only* listserv for families that have multiple births, in which one or more

of the children have Down syndrome.

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Messages In This Digest (16 Messages)

1a.

camp and assistant at school From: Tiernan, Kay M

1b.

Re: camp and assistant at school From: igercak

1c.

Re: camp and assistant at school From: Merry Low

1d.

Re: camp and assistant at school From: igercak

1e.

Re: camp and assistant at school From: Merry Low

1f.

Re: camp and assistant at school From: igercak

1g.

Re: camp and assistant at school From: Merry Low

2a.

Re: Casey & Gail Question for you From: igercak

2b.

Re: Casey & Gail Question for you From: Gail

2c.

Re: Casey & Gail Question for you From: igercak

2d.

Re: Inclusion: Irene From: Suze Black

2e.

Re: Inclusion: Irene From: SETREB@...

3.

Re: off to camp! From: Gail

4.

Re: Camp From: igercak

5a.

Atlantoaxial instability screening-POSITIVE From: cathyshaw02

5b.

Re: Atlantoaxial instability screening-POSITIVE From: SETREB@...

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Messages

1a.

camp and assistant at school

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Posted by: " Tiernan, Kay M " kay.tiernan@...

<mailto:kay.tiernan@...?Subject=Re: camp%20and%20assistant%20at%20school>

tiernantriplets <http://profiles.yahoo.com/tiernantriplets>

Fri Jul 28, 2006 6:41 am (PST)

Sounds like camp was great for everyone! Love to hear the positive

experiences! Marcia, I would have been crying the whole time!!

Casey, I'm going to look for that book too. Just curious. Did they read

the book with in the room? Did she sit with the other kids

while the teacher was reading it?

So Tara, and Zachary all will be big 1st Graders! 22 in a

classroom is a lot for one teacher. I would still keep pushing to get an

ass't and suggest that his seat always be as close to the teacher as

possible.

has a personal assistant. Got her for Kindergarten and will keep

her indefinitely at this point. We're blessed that she is a wonderful

woman too. First one they assigned couldn't speak clear English - to a

girl who's speech was her biggest problem. Not a good match so we were

able to request a new one.

One of the main reasons was due to having a pacemaker and the need

to keep her safe in the classroom and on the playground. I'm sure there

is plenty more justification for having a personal assistant though.

I'll ask our local support group.

Kay Tiernan, Mom to Jon, and (DS), 7 yrs old, Arlington,

VA

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1b.

Re: camp and assistant at school

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Posted by: " igercak " igercak@... <mailto:igercak@...?Subject=

Re%3A%20camp%20and%20assistant%20at%20school> igercak

<http://profiles.yahoo.com/igercak>

Fri Jul 28, 2006 8:23 am (PST)

Kay,

I belong to several local PODS (parents of Down Syndrome Angels) groups in

Florida,

the families that chose to include their children in GEN ED, usually have

documentation

about on task behavior, redirection, sensory issues (the need to touch

everything), safety

around campus, transitioning to special areas etc, we have all that, his

Present Levels

state it, he has a FBA functional behavior assessment and plan w/ over 10

directives for

his teacher when his behavior is off task or inappropriate but how can 1

teacher follow

through on the plan properly when she has 21 other children. Our complaint is

w/ our

County not our school, they have been urging the district for 1. He has social

stories,

assisted technology, sensory stuff, everything short of a person to help him.

In our County

the children like Zack are in self contained classes, which is fine if that is

where the child

belongs and the family desires that setting. So when you dare to try and

enforce FAPE and

LRE you are given social stories etc and set up to fail. He was tested in

Kindergarten and

the tester was shocked at his verbal scores and his intelligence and went on

record as

saying he is appropriately placed w/ his non disable peers. I have another

meeting w/

the Director of ESE, whom I know personally from sitting on the ESE Advisory

for 4 years.

I know in my heart nothing will come from our meeting because, he has stated

that " aids

are bad they cause dependency and children suffer. " The only study he sites is

one w/

autistic children. I tell him that our children DS are therapy kids they have

great potential

and a little dependency on adults is fine. Zachary will for many years be

dependent on adults

till he masters each skill that he needs to practice over and over. Anyway

where I am now

is that after our meeting we will be filing a complaint w/ the Office of Civil

Rights OCR,

claiming Zack's rights to be successful in a Regular class are being denied

because he

is not being given all the necessary " Supports and Services " afforded to him by

IDEA.

This recourse is free to us and better than filing a Due Process w/ the FL DOE,

here in

FL the success rates for families Vs Dep't of ED is less than 15%, and it costs

alot of

money to properly fight. We have 2 family support groups locally in our county

for families

w/ children w/ special needs and over and over the stories are the same, we

couldn't get

x or y and very often they are home schooling their child. So I guess someone

has to hold

them up to higher standards or it will never get better.

Irene

Jake 10

Zachary DS, , & 8

Re: Camp

Hi Suze,

You are sooo good; big hug to you from me and please give yourself a pat on the

back---you truly deserve it. How did Gavin do at camp? will be 5 1/2 next

summer and I can see camp in her summer itinerary---not in mine but I do see it

in hers. She's doing so well at school this summer---2 full days a week---better

than she's doing at home. She's not bad or miserable at home but she's sooo

happy at school....when I went to pick her up the other day she didn't want to

leave. She said " no " and sat back down in her chair. As much as I love seeing

that because I know it's a great place---it makes me cry my eyes out!!!! Anyway,

back to the subject, how did you do with Gavin at camp?

Sherrill

mom to Jillian 8 1/2 and and (D/s) 4 1/2

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5a.

Atlantoaxial instability screening-POSITIVE

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Posted by: " cathyshaw02 " cathyshaw02@...

<mailto:cathyshaw02@...?Subject=Re:

Atlantoaxial%20instability%20screening-POSITIVE> cathyshaw02

<http://profiles.yahoo.com/cathyshaw02>

Fri Jul 28, 2006 12:57 pm (PST)

Hi Everyone,

My daughter, who just turned 2 years old in June was screened last

night via the cspine x-ray. It came back positive. We now have an

appointment on Tuesday with a neurosurgeon so that he can look her

over and consult with us. Her pediatrician is the one who ordered the

test. I think she was thinking that this was the routine time to do

it. But, everything I have read states that kids with DS usually

aren't screened until 3-5 years old for this because it is too hard

to

tell at such a young age, with all the cartilage, etc.

Has anyone had any experience with this? We are completely panicked,

to say the least.

Thanks in advance,

mom to 4 yo Ethan and 2 yo (DS)

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5b.

Re: Atlantoaxial instability screening-POSITIVE

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Posted by: " SETREB@... " SETREB@... <mailto:SETREB@...?Subject=

Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE>

Fri Jul 28, 2006 8:30 pm (PST)

Hi ,

I don't know if this helps but I will share my experience. had this

test at the typical age as they say " 3 " and it came back with a small space in

her spine so she needed to see the specialist. I, too, was somewhat

panicked. But when we got there he checked her out, mostly wanted to see her

walking and had her x-rayed. He then said the space was so small that there was

nothing that needed to be done. And that was it.

Have a nice weekend and good luck.

Sherrill

mom to Jillian 8 1/2, and (D/s) 4 1/2

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[Guest guest]

My deepest sympathy on the loss of your beloved daughter Grace. Joyce , grandmother to (6), (3) and Will (DS) and Jake (1 1/2)"May, P." wrote: Hello fellow moms,This is Cindi in SC....I have not written for quite some time, and I am devastated to tell you this will be my last post. In early June my daughter Grace (a triplet with Down syndrome) was diagnosed with leukemia. Within a week of her diagnosis her immune system dropped (from

both the cancer and the treatment), and she contracted a serious infection. She was in the ICU for 5 weeks, and fought like a trouper as each system in her little body was attacked. Ultimately it proved too great a battle for her, and she passed away on July 16th. You all have been a tremendous source of encouragement, inspiration, and information for me during Grace's three short years. I thank all of you for your wisdom and willingness to share your experiences. Though I did not post often, I read every note, and so appreciated all warmth, comfort, and support from this listserv. I know that each of you can imagine our sorrow, as having a child with Down syndrome is incredibly special, but to also have a child who is a multiple is quite unique. Grace's four siblings feel her loss every day, but her triplet sister is especially overwhelmed by her absence. I know the daily challenges and struggles you all face having a child with special needs, and having multiples

(or multiple children with special needs)...but today and always I will be envious of those challenges as the silence is much more difficult. I will continue working in ton to improve the opportunities for children with Ds, especially in schools, so if any of you have information on inclusion (or want information from me), please don't hesitate to share.I will always think of you when I remember my Gracie.Cindi in SCmom to Tom and (twins, age 7) and Sam, Grace (Ds) and Lily (triplets, age 3)________________________________From: Multiples-DS [mailto:Multiples-DS ]Sent: Sat 7/29/2006 4:56 AMTo: Multiples-DS Subject: Digest Number 2150The *only*

listserv for families that have multiple births, in which one or more of the children have Down syndrome. <http://groups.yahoo.com/group/Multiples-DS;_ylc=X3oDMTJjNThqN2dmBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2hkcgRzbGsDaHBoBHN0aW1lAzExNTQxNjMzNzQ-> Messages In This Digest (16 Messages) 1a. camp and assistant at school From: Tiernan, Kay M 1b. Re: camp and assistant at school From: igercak 1c. Re: camp and assistant at school From: Merry Low 1d. Re: camp and assistant at school From: igercak 1e. Re: camp and assistant at school From: Merry Low 1f. Re: camp and assistant at school From: igercak 1g. Re: camp and assistant at school From: Merry Low

2a. Re: Casey & Gail Question for you From: igercak 2b. Re: Casey & Gail Question for you From: Gail 2c. Re: Casey & Gail Question for you From: igercak 2d. Re: Inclusion: Irene From: Suze Black 2e. Re: Inclusion: Irene From: SETREB@... 3. Re: off to camp! From: Gail 4. Re: Camp From: igercak 5a. Atlantoaxial instability screening-POSITIVE From: cathyshaw02 5b. Re: Atlantoaxial instability screening-POSITIVE From: SETREB@... View All Topics <http://groups.yahoo.com/group/Multiples-DS/messages;_ylc=X3oDMTJlNm5xY2M2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2Rtc2cEc2xrA2F0cGMEc3RpbWUDMTE1NDE2MzM3NA--?xm=1 & m=p & tidx=1> | Create New Topic <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJlbWVzbDU0BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2Rtc2cEc2xrA250cGMEc3RpbWUDMTE1NDE2MzM3NA--> Messages 1a.

camp and assistant at school <http://groups.yahoo.com/group/Multiples-DS/message/16246;_ylc=X3oDMTJxaXY4YzFzBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "Tiernan, Kay M" kay.tiernanqwest <mailto:kay.tiernanqwest?Subject=Re: camp%20and%20assistant%20at%20school> tiernantriplets <http://profiles.yahoo.com/tiernantriplets> Fri Jul 28, 2006 6:41 am (PST) Sounds like

camp was great for everyone! Love to hear the positiveexperiences! Marcia, I would have been crying the whole time!!Casey, I'm going to look for that book too. Just curious. Did they readthe book with in the room? Did she sit with the other kidswhile the teacher was reading it?So Tara, and Zachary all will be big 1st Graders! 22 in aclassroom is a lot for one teacher. I would still keep pushing to get anass't and suggest that his seat always be as close to the teacher aspossible. has a personal assistant. Got her for Kindergarten and will keepher indefinitely at this point. We're blessed that she is a wonderfulwoman too. First one they assigned couldn't speak clear English - to agirl who's speech was her biggest problem. Not a good match so we wereable to request a new one.One of the main reasons was due to having a pacemaker and the needto keep her safe in the

classroom and on the playground. I'm sure thereis plenty more justification for having a personal assistant though.I'll ask our local support group.Kay Tiernan, Mom to Jon, and (DS), 7 yrs old, Arlington,VA This communication is the property of Qwest and may contain confidential orprivileged information. Unauthorized use of this communication is strictly prohibited and may be unlawful. If you have received this communication in error, please immediately notify the sender by reply e-mail and destroy all copies of the communication and any attachments.Back to top Reply to sender <mailto:kay.tiernanqwest?Subject=Re: camp%20and%20assistant%20at%20school> | Reply to group <mailto:Multiples-DS ?Subject=Re: camp%20and%20assistant%20at%20school> |

Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxbDM5amt2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16246> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16246;_ylc=X3oDMTM2YWgzbzhxBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI0Ng--> (7) 1b. Re: camp and assistant at school <http://groups.yahoo.com/group/Multiples-DS/message/16251;_ylc=X3oDMTJxaTY0ajQxBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTEEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "igercak" igercakcfl (DOT) rr.com <mailto:igercakcfl (DOT) rr.com?Subject= Re%3A%20camp%20and%20assistant%20at%20school> igercak <http://profiles.yahoo.com/igercak> Fri Jul 28, 2006 8:23 am (PST) Kay,I belong to several local PODS (parents of Down Syndrome Angels) groups in Florida,the

families that chose to include their children in GEN ED, usually have documentationabout on task behavior, redirection, sensory issues (the need to touch everything), safetyaround campus, transitioning to special areas etc, we have all that, his Present Levels state it, he has a FBA functional behavior assessment and plan w/ over 10 directives forhis teacher when his behavior is off task or inappropriate but how can 1 teacher follow through on the plan properly when she has 21 other children. Our complaint is w/ ourCounty not our school, they have been urging the district for 1. He has social stories,assisted technology, sensory stuff, everything short of a person to help him. In our Countythe children like Zack are in self contained classes, which is fine if that is where the child belongs and the family desires that setting. So when you dare to try and enforce FAPE andLRE you are given social stories etc and set up to fail. He was

tested in Kindergarten andthe tester was shocked at his verbal scores and his intelligence and went on record assaying he is appropriately placed w/ his non disable peers. I have another meeting w/the Director of ESE, whom I know personally from sitting on the ESE Advisory for 4 years.I know in my heart nothing will come from our meeting because, he has stated that "aidsare bad they cause dependency and children suffer. " The only study he sites is one w/autistic children. I tell him that our children DS are therapy kids they have great potentialand a little dependency on adults is fine. Zachary will for many years be dependent on adultstill he masters each skill that he needs to practice over and over. Anyway where I am nowis that after our meeting we will be filing a complaint w/ the Office of Civil Rights OCR, claiming Zack's rights to be successful in a Regular class are being denied because heis not being given all the

necessary "Supports and Services" afforded to him by IDEA.This recourse is free to us and better than filing a Due Process w/ the FL DOE, here in FL the success rates for families Vs Dep't of ED is less than 15%, and it costs alot ofmoney to properly fight. We have 2 family support groups locally in our county for familiesw/ children w/ special needs and over and over the stories are the same, we couldn't get x or y and very often they are home schooling their child. So I guess someone has to holdthem up to higher standards or it will never get better.IreneJake 10Zachary DS, , & 8 Re: CampHi Suze,You are sooo good; big hug to you from me and please give yourself a pat on the back---you truly deserve it. How did Gavin do at camp? will be 5 1/2 next summer and I can see camp in her summer itinerary---not in mine but I do see it in hers. She's doing so well at school this summer---2 full days a week---better than she's doing at home. She's not bad or miserable at home but she's sooo happy at school....when I went to pick her up the other day she didn't want to leave. She said "no" and sat back down in her chair. As much as I love seeing that

because I know it's a great place---it makes me cry my eyes out!!!! Anyway, back to the subject, how did you do with Gavin at camp?Sherrillmom to Jillian 8 1/2 and and (D/s) 4 1/2--No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.10.4/396 - Release Date: 7/24/2006--No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.10.4/396 - Release Date: 7/24/2006Back to top Reply to sender <mailto:igercakcfl (DOT) rr.com?Subject= Re%3A%20Camp> | Reply to group <mailto:Multiples-DS ?Subject= Re%3A%20Camp> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxN2Q4MTQ2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDkEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16249> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16223;_ylc=X3oDMTM2dGZscWZrBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDkEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjIyMw--> (9) 5a. Atlantoaxial instability screening-POSITIVE <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTJxNTIzaGs0BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "cathyshaw02" cathyshaw02 <mailto:cathyshaw02?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> cathyshaw02 <http://profiles.yahoo.com/cathyshaw02> Fri Jul 28, 2006 12:57 pm (PST) Hi Everyone,My daughter, who just turned 2 years old

in June was screened lastnight via the cspine x-ray. It came back positive. We now have anappointment on Tuesday with a neurosurgeon so that he can look herover and consult with us. Her pediatrician is the one who ordered thetest. I think she was thinking that this was the routine time to doit. But, everything I have read states that kids with DS usuallyaren't screened until 3-5 years old for this because it is too hard totell at such a young age, with all the cartilage, etc.Has anyone had any experience with this? We are completely panicked,to say the least.Thanks in advance, mom to 4 yo Ethan and 2 yo (DS)Back to top Reply to sender <mailto:cathyshaw02?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> | Reply to group <mailto:Multiples-DS ?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxcG05OGo3BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16257> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTM2azlvOGtiBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI1Nw--> (2) 5b. Re: Atlantoaxial instability screening-POSITIVE <http://groups.yahoo.com/group/Multiples-DS/message/16261;_ylc=X3oDMTJxMTV1NnNnBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "SETREB@..." SETREB@... <mailto:SETREB@...?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> Fri Jul 28, 2006 8:30 pm (PST) Hi ,I don't know if this helps but I will share my experience. had this test at the typical age as they say "3" and it came back with a small space in

her spine so she needed to see the specialist. I, too, was somewhat panicked. But when we got there he checked her out, mostly wanted to see her walking and had her x-rayed. He then said the space was so small that there was nothing that needed to be done. And that was it.Have a nice weekend and good luck.Sherrillmom to Jillian 8 1/2, and (D/s) 4 1/2Back to top Reply to sender <mailto:SETREB@...?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> | Reply to group <mailto:Multiples-DS ?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxaWtkNjF2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16261> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTM2bTcwMjEzBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI1Nw--> (2) Recent Activity* 5 New Photos <http://groups.yahoo.com/group/Multiples-DS/spnew;_ylc=X3oDMTJlbzZmamszBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA3Z0bARzbGsDdnBob3QEc3RpbWUDMTE1NDE2MzM3NA--> Visit Your Group <http://groups.yahoo.com/group/Multiples-DS;_ylc=X3oDMTJkbnBudXQ3BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA3Z0bARzbGsDdmdocARzdGltZQMxMTU0MTYzMzc0>

[Guest guest]

Cindi,

I am very deeply saddened by the loss of little Grace. I am just shocked to hear the news. I understand your feeling on the uniquness of a multiple loss....and loss of a unique child. I lost one of my twins with DS 3 1/2 yrs ago. Please know I will be thinking of you through this time. If you need a shoulder...I am here.

Deanna mom to Alyssa, 12 , 10 Jarod, 5 1/2 , 3 (DS) ~i~Jordan (DS) 1/20/03-2/2/03

[Guest guest]

Cindi,

I am so filled with sorrow for you and your family, as you cope with this tremendous loss. There are no words to help, but please know how much support you have from this community, and feel free to post anytime. I'll be thinking of your Lily especially, and hoping she finds a way to process this loss. My thoughts are with you all.

Casey, mom to (DS) and , 6

[Guest guest]

Cindi,

You and your family are in our thoughts and prayers.

and family

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of May, P.Sent: Saturday, July 29, 2006 2:05 PMTo: Multiples-DS Subject: RE: Digest Number 2150

Hello fellow moms,This is Cindi in SC....I have not written for quite some time, and I am devastated to tell you this will be my last post. In early June my daughter Grace (a triplet with Down syndrome) was diagnosed with leukemia. Within a week of her diagnosis her immune system dropped (from both the cancer and the treatment), and she contracted a serious infection. She was in the ICU for 5 weeks, and fought like a trouper as each system in her little body was attacked. Ultimately it proved too great a battle for her, and she passed away on July 16th. You all have been a tremendous source of encouragement, inspiration, and information for me during Grace's three short years. I thank all of you for your wisdom and willingness to share your experiences. Though I did not post often, I read every note, and so appreciated all warmth, comfort, and support from this listserv. I know that each of you can imagine our sorrow, as having a child with Down syndrome is incredibly special, but to also have a child who is a multiple is quite unique. Grace's four siblings feel her loss every day, but her triplet sister is especially overwhelmed by her absence. I know the daily challenges and struggles you all face having a child with special needs, and having multiples (or multiple children with special needs)...but today and always I will be envious of those challenges as the silence is much more difficult. I will continue working in ton to improve the opportunities for children with Ds, especially in schools, so if any of you hav e information on inclusion (or want information from me), please don't hesitate to share.I will always think of you when I remember my Gracie.Cindi in SCmom to Tom and (twins, age 7) and Sam, Grace (Ds) and Lily (triplets, age 3)________________________________From: Multiples-DS [mailto:Multiples-DS ]Sent: Sat 7/29/2006 4:56 AMTo: Multiples-DS Subject: Digest Number 2150The *only* listserv for families that have multiple births, in which one or more of the children have Down syndrome. <http://groups.yahoo.com/group/Multiples-DS;_ylc=X3oDMTJjNThqN2dmBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2hkcgRzbGsDaHBoBHN0aW1lAzExNTQxNjMzNzQ-> Messages In This Digest (16 Messages) 1a. camp and assistant at school From: Tiernan, Kay M 1b. Re: camp and assistant at school From: igercak 1c. Re: camp and assistant at school From: Merry Low 1d. Re: camp and assistant at school From: igercak 1e. Re: camp and assistant at school From: Merry Low 1f. Re: camp and assistant at school From: igercak 1g. Re: camp and assistant at school From: Merry Low 2a. Re: Casey & Gail Question for you From: igercak 2b. Re: Casey & Gail Question for you From: Gail 2c. Re: Casey & Gail Question for you From: igercak 2d. Re: Inclusion: Irene From: Suze Black 2e. Re: Inclusion: Irene From: SETREB@... 3. Re: off to camp! From: Gail 4. Re: Camp From: igercak 5a. Atlantoaxial instability screening-POSITIVE From: cathyshaw02 5b. Re: Atlantoaxial instability screening-POSITIVE From: SETREB@... View All Topics <http://groups.yahoo.com/group/Multiples-DS/messages;_ylc=X3oDMTJlNm5xY2M2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2Rtc2cEc2xrA2F0cGMEc3RpbWUDMTE1NDE2MzM3NA--?xm=1 & m=p & tidx=1> | Create New Topic <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJlbWVzbDU0BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2Rtc2cEc2xrA250cGMEc3RpbWUDMTE1NDE2MzM3NA--> Messages 1a. camp and assistant at school <http://groups.yahoo.com/group/Multiples-DS/message/16246;_ylc=X3oDMTJxaXY4YzFzBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "Tiernan, Kay M" kay.tiernanqwest <mailto:kay.tiernanqwest?Subject=Re: camp%20and%20assistant%20at%20school> tiernantriplets <http://profiles.yahoo.com/tiernantriplets> Fri Jul 28, 2006 6:41 am (PST) Sounds like camp was great for everyone! Love to hear the positiveexperiences! Marcia, I would have been crying the whole time!!Casey, I'm going to look for that book too. Just curious. Did they readthe book with in the room? Did she sit with the other kidswhile the teacher was reading it?So Tara, and Zachary all will be big 1st Graders! 22 in aclassroom is a lot for one teacher. I would still keep pushing to get anass't and suggest that his seat always be as close to the teacher aspossible. has a personal assistant. Got her for Kindergarten and will keepher indefinitely at this point. We're blessed that she is a wonderfulwoman too. First one they assigned couldn't speak clear English - to agirl who's speech was her biggest problem. Not a good match so we wereable to request a new one.One of the main reasons was due to having a pacemaker and the needto keep her safe in the classroom and on the playground. I'm sure thereis plenty more justification for having a personal assistant though.I'll ask our local support group.Kay Tiernan, Mom to Jon, and (DS), 7 yrs old, Arlington,VA This communication is the property of Qwest and may contain confidential orprivileged information. Unauthorized use of this communication is strictly prohibited and may be unlawful. If you have received this communication in error, please immediately notify the sender by reply e-mail and destroy all copies of the communication and any attachments.Back to top Reply to sender <mailto:kay.tiernanqwest?Subject=Re: camp%20and%20assistant%20at%20school> | Reply to group <mailto:Multiples-DS ?Subject=Re: camp%20and%20assistant%20at%20school> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxbDM5amt2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16246> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16246;_ylc=X3oDMTM2YWgzbzhxBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI0Ng--> (7) 1b. Re: camp and assistant at school <http://groups.yahoo.com/group/Multiples-DS/message/16251;_ylc=X3oDMTJxaTY0ajQxBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTEEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "igercak" igercakcfl (DOT) rr.com <mailto:igercakcfl (DOT) rr.com?Subject= Re%3A%20camp%20and%20assistant%20at%20school> igercak <http://profiles.yahoo.com/igercak> Fri Jul 28, 2006 8:23 am (PST) Kay,I belong to several local PODS (parents of Down Syndrome Angels) groups in Florida,the families that chose to include their children in GEN ED, usually have documentationabout on task behavior, redirection, sensory issues (the need to touch everything), safetyaround campus, transitioning to special areas etc, we have all that, his Present Levels state it, he has a FBA functional behavior assessment and plan w/ over 10 directives forhis teacher when his behavior is off task or inappropriate but how can 1 teacher follow through on the plan properly when she has 21 other children. Our complaint is w/ ourCounty not our school, they have been urging the district for 1. He has social stories,assisted technology, sensory stuff, everything short of a person to help him. In our Countythe children like Zack are in self contained classes, which is fine if that is where the child belongs and the family desires that setting. So when you dare to try and enforce FAPE andLRE you are given social stories etc and set up to fail. He was tested in Kindergarten andthe tester was shocked at his verbal scores and his intelligence and went on record assaying he is appropriately placed w/ his non disable peers. I have another meeting w/the Director of ESE, whom I know personally from sitting on the ESE Advisory for 4 years.I know in my heart nothing will come from our meeting because, he has stated that "aidsare bad they cause dependency and children suffer. " The only study he sites is one w/autistic children. I tell him that our children DS are therapy kids they have great potentialand a little dependency on adults is fine. Zachary will for many years be dependent on adultstill he masters each skill that he needs to practice over and over. Anyway where I am nowis that after our meeting we will be filing a complaint w/ the Office of Civil Rights OCR, claiming Zack's rights to be successful in a Regular class are being denied because heis not being given all the necessary "Supports and Services" afforded to him by IDEA.This recourse is free to us and better than filing a Due Process w/ the FL DOE, here in FL the success rates for families Vs Dep't of ED is less than 15%, and it costs alot ofmoney to properly fight. We have 2 family support groups locally in our county for familiesw/ children w/ special needs and over and over the stories are the same, we couldn't get x or y and very often they are home schooling their child. So I guess someone has to holdthem up to higher standards or it will never get better.IreneJake 10Zachary DS, , & 8 Re: CampHi Suze,You are sooo good; big hug to you from me and please give yourself a pat on the back---you truly deserve it. How did Gavin do at camp? will be 5 1/2 next summer and I can see camp in her summer itinerary---not in mine but I do see it in hers. She's doing so well at school this summer---2 full days a week---better than she's doing at home. She's not bad or miserable at home but she's sooo happy at school....when I went to pick her up the other day she didn't want to leave. She said "no" and sat back down in her chair. As much as I love seeing that because I know it's a great place---it makes me cry my eyes out!!!! Anyway, back to the subject, how did you do with Gavin at camp?Sherrillmom to Jillian 8 1/2 and and (D/s) 4 1/2--No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.10.4/396 - Release Date: 7/24/2006--No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.10.4/396 - Release Date: 7/24/2006Back to top Reply to sender <mailto:igercakcfl (DOT) rr.com?Subject= Re%3A%20Camp> | Reply to group <mailto:Multiples-DS ?Subject= Re%3A%20Camp> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxN2Q4MTQ2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDkEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16249> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16223;_ylc=X3oDMTM2dGZscWZrBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDkEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjIyMw--> (9) 5a. Atlantoaxial instability screening-POSITIVE <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTJxNTIzaGs0BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "cathyshaw02" cathyshaw02 <mailto:cathyshaw02?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> cathyshaw02 <http://profiles.yahoo.com/cathyshaw02> Fri Jul 28, 2006 12:57 pm (PST) Hi Everyone,My daughter, who just turned 2 years old in June was screened lastnight via the cspine x-ray. It came back positive. We now have anappointment on Tuesday with a neurosurgeon so that he can look herover and consult with us. Her pediatrician is the one who ordered thetest. I think she was thinking that this was the routine time to doit. But, everything I have read states that kids with DS usuallyaren't screened until 3-5 years old for this because it is too hard totell at such a young age, with all the cartilage, etc.Has anyone had any experience with this? We are completely panicked,to say the least.Thanks in advance, mom to 4 yo Ethan and 2 yo (DS)Back to top Reply to sender <mailto:cathyshaw02?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> | Reply to group <mailto:Multiples-DS ?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxcG05OGo3BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16257> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTM2azlvOGtiBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI1Nw--> (2) 5b. Re: Atlantoaxial instability screening-POSITIVE <http://groups.yahoo.com/group/Multiples-DS/message/16261;_ylc=X3oDMTJxMTV1NnNnBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "SETREB@..." SETREB@... <mailto:SETREB@...?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> Fri Jul 28, 2006 8:30 pm (PST) Hi ,I don't know if this helps but I will share my experience. had this test at the typical age as they say "3" and it came back with a small space in her spine so she needed to see the specialist. I, too, was somewhat panicked. But when we got there he checked her out, mostly wanted to see her walking and had her x-rayed. He then said the space was so small that there was nothing that needed to be done. And that was it.Have a nice weekend and good luck.Sherrillmom to Jillian 8 1/2, and (D/s) 4 1/2Back to top Reply to sender <mailto:SETREB@...?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> | Reply to group <mailto:Multiples-DS ?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxaWtkNjF2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16261> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTM2bTcwMjEzBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI1Nw--> (2) Recent Activity* 5 New Photos <http://groups.yahoo.com/group/Multiples-DS/spnew;_ylc=X3oDMTJlbzZmamszBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA3Z0bARzbGsDdnBob3QEc3RpbWUDMTE1NDE2MzM3NA--> Visit Your Group <http://groups.yahoo.com/group/Multiples-DS;_ylc=X3oDMTJkbnBudXQ3BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA3Z0bARzbGsDdmdocARzdGltZQMxMTU0MTYzMzc0>

[Guest guest]

I am very sorry for your loss.

and family

__________________________________________________

[Guest guest]

Our thoughts and Prayers are with you as you go through this most difficult time. Hugs to all of you. Judy & Bob Parents to 26yrs. the joy of our lives who happens to have ds & multiple disabilities and 34yrs.

-- RE: Digest Number 2150

Hello fellow moms,This is Cindi in SC....I have not written for quite some time, and I am devastated to tell you this will be my last post. In early June my daughter Grace (a triplet with Down syndrome) was diagnosed with leukemia. Within a week of her diagnosis her immune system dropped (from both the cancer and the treatment), and she contracted a serious infection. She was in the ICU for 5 weeks, and fought like a trouper as each system in her little body was attacked. Ultimately it proved too great a battle for her, and she passed away on July 16th. You all have been a tremendous source of encouragement, inspiration, and information for me during Grace's three short years. I thank all of you for your wisdom and willingness to share your experiences. Though I did not post often, I read every note, and so appreciated all warmth, comfort, and support from this listserv. I know that each of you can imagine our sorrow, as having a child with Down syndrome is incredibly special, but to also have a child who is a multiple is quite unique. Grace's four siblings feel her loss every day, but her triplet sister is especially overwhelmed by her absence. I know the daily challenges and struggles you all face having a child with special needs, and having multiples (or multiple children with special needs)...but today and always I will be envious of those challenges as the silence is much more difficult. I will continue working in ton to improve the opportunities for children with Ds, especially in schools, so if any of you have information on inclusion (or want information from me), please don't hesitate to share.I will always think of you when I remember my Gracie.Cindi in SCmom to Tom and (twins, age 7) and Sam, Grace (Ds) and Lily (triplets, age 3)________________________________From: Multiples-DS [mailto:Multiples-DS ]Sent: Sat 7/29/2006 4:56 AMTo: Multiples-DS Subject: Digest Number 2150The *only* listserv for families that have multiple births, in which one or more of the children have Down syndrome. <http://groups.yahoo.com/group/Multiples-DS;_ylc=X3oDMTJjNThqN2dmBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2hkcgRzbGsDaHBoBHN0aW1lAzExNTQxNjMzNzQ-> Messages In This Digest (16 Messages) 1a. camp and assistant at school From: Tiernan, Kay M 1b. Re: camp and assistant at school From: igercak 1c. Re: camp and assistant at school From: Merry Low 1d. Re: camp and assistant at school From: igercak 1e. Re: camp and assistant at school From: Merry Low 1f. Re: camp and assistant at school From: igercak 1g. Re: camp and assistant at school From: Merry Low 2a. Re: Casey & Gail Question for you From: igercak 2b. Re: Casey & Gail Question for you From: Gail 2c. Re: Casey & Gail Question for you From: igercak 2d. Re: Inclusion: Irene From: Suze Black 2e. Re: Inclusion: Irene From: SETREB@... 3. Re: off to camp! From: Gail 4. Re: Camp From: igercak 5a. Atlantoaxial instability screening-POSITIVE From: cathyshaw02 5b. Re: Atlantoaxial instability screening-POSITIVE From: SETREB@... View All Topics <http://groups.yahoo.com/group/Multiples-DS/messages;_ylc=X3oDMTJlNm5xY2M2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2Rtc2cEc2xrA2F0cGMEc3RpbWUDMTE1NDE2MzM3NA--?xm=1 & m=p & tidx=1> | Create New Topic <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJlbWVzbDU0BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA2Rtc2cEc2xrA250cGMEc3RpbWUDMTE1NDE2MzM3NA--> Messages 1a. camp and assistant at school <http://groups.yahoo.com/group/Multiples-DS/message/16246;_ylc=X3oDMTJxaXY4YzFzBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "Tiernan, Kay M" kay.tiernanqwest <mailto:kay.tiernanqwest?Subject=Re: camp%20and%20assistant%20at%20school> tiernantriplets <http://profiles.yahoo.com/tiernantriplets> Fri Jul 28, 2006 6:41 am (PST) Sounds like camp was great for everyone! Love to hear the positiveexperiences! Marcia, I would have been crying the whole time!!Casey, I'm going to look for that book too. Just curious. Did they readthe book with in the room? Did she sit with the other kidswhile the teacher was reading it?So Tara, and Zachary all will be big 1st Graders! 22 in aclassroom is a lot for one teacher. I would still keep pushing to get anass't and suggest that his seat always be as close to the teacher aspossible. has a personal assistant. Got her for Kindergarten and will keepher indefinitely at this point. We're blessed that she is a wonderfulwoman too. First one they assigned couldn't speak clear English - to agirl who's speech was her biggest problem. Not a good match so we wereable to request a new one.One of the main reasons was due to having a pacemaker and the needto keep her safe in the classroom and on the playground. I'm sure thereis plenty more justification for having a personal assistant though.I'll ask our local support group.Kay Tiernan, Mom to Jon, and (DS), 7 yrs old, Arlington,VA This communication is the property of Qwest and may contain confidential orprivileged information. Unauthorized use of this communication is strictly prohibited and may be unlawful. If you have received this communication in error, please immediately notify the sender by reply e-mail and destroy all copies of the communication and any attachments.Back to top Reply to sender <mailto:kay.tiernanqwest?Subject=Re: camp%20and%20assistant%20at%20school> | Reply to group <mailto:Multiples-DS ?Subject=Re: camp%20and%20assistant%20at%20school> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxbDM5amt2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16246> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16246;_ylc=X3oDMTM2YWgzbzhxBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDYEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI0Ng--> (7) 1b. Re: camp and assistant at school <http://groups.yahoo.com/group/Multiples-DS/message/16251;_ylc=X3oDMTJxaTY0ajQxBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTEEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "igercak" igercakcfl (DOT) rr.com <mailto:igercakcfl (DOT) rr.com?Subject= Re%3A%20camp%20and%20assistant%20at%20school> igercak <http://profiles.yahoo.com/igercak> Fri Jul 28, 2006 8:23 am (PST) Kay,I belong to several local PODS (parents of Down Syndrome Angels) groups in Florida,the families that chose to include their children in GEN ED, usually have documentationabout on task behavior, redirection, sensory issues (the need to touch everything), safetyaround campus, transitioning to special areas etc, we have all that, his Present Levels state it, he has a FBA functional behavior assessment and plan w/ over 10 directives forhis teacher when his behavior is off task or inappropriate but how can 1 teacher follow through on the plan properly when she has 21 other children. Our complaint is w/ ourCounty not our school, they have been urging the district for 1. He has social stories,assisted technology, sensory stuff, everything short of a person to help him. In our Countythe children like Zack are in self contained classes, which is fine if that is where the child belongs and the family desires that setting. So when you dare to try and enforce FAPE andLRE you are given social stories etc and set up to fail. He was tested in Kindergarten andthe tester was shocked at his verbal scores and his intelligence and went on record assaying he is appropriately placed w/ his non disable peers. I have another meeting w/the Director of ESE, whom I know personally from sitting on the ESE Advisory for 4 years.I know in my heart nothing will come from our meeting because, he has stated that "aidsare bad they cause dependency and children suffer. " The only study he sites is one w/autistic children. I tell him that our children DS are therapy kids they have great potentialand a little dependency on adults is fine. Zachary will for many years be dependent on adultstill he masters each skill that he needs to practice over and over. Anyway where I am nowis that after our meeting we will be filing a complaint w/ the Office of Civil Rights OCR, claiming Zack's rights to be successful in a Regular class are being denied because heis not being given all the necessary "Supports and Services" afforded to him by IDEA.This recourse is free to us and better than filing a Due Process w/ the FL DOE, here in FL the success rates for families Vs Dep't of ED is less than 15%, and it costs alot ofmoney to properly fight. We have 2 family support groups locally in our county for familiesw/ children w/ special needs and over and over the stories are the same, we couldn't get x or y and very often they are home schooling their child. So I guess someone has to holdthem up to higher standards or it will never get better.IreneJake 10Zachary DS, , & 8 Re: CampHi Suze,You are sooo good; big hug to you from me and please give yourself a pat on the back---you truly deserve it. How did Gavin do at camp? will be 5 1/2 next summer and I can see camp in her summer itinerary---not in mine but I do see it in hers. She's doing so well at school this summer---2 full days a week---better than she's doing at home. She's not bad or miserable at home but she's sooo happy at school....when I went to pick her up the other day she didn't want to leave. She said "no" and sat back down in her chair. As much as I love seeing that because I know it's a great place---it makes me cry my eyes out!!!! Anyway, back to the subject, how did you do with Gavin at camp?Sherrillmom to Jillian 8 1/2 and and (D/s) 4 1/2--No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.10.4/396 - Release Date: 7/24/2006--No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.10.4/396 - Release Date: 7/24/2006Back to top Reply to sender <mailto:igercakcfl (DOT) rr.com?Subject= Re%3A%20Camp> | Reply to group <mailto:Multiples-DS ?Subject= Re%3A%20Camp> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxN2Q4MTQ2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDkEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16249> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16223;_ylc=X3oDMTM2dGZscWZrBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNDkEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjIyMw--> (9) 5a. Atlantoaxial instability screening-POSITIVE <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTJxNTIzaGs0BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "cathyshaw02" cathyshaw02 <mailto:cathyshaw02?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> cathyshaw02 <http://profiles.yahoo.com/cathyshaw02> Fri Jul 28, 2006 12:57 pm (PST) Hi Everyone,My daughter, who just turned 2 years old in June was screened lastnight via the cspine x-ray. It came back positive. We now have anappointment on Tuesday with a neurosurgeon so that he can look herover and consult with us. Her pediatrician is the one who ordered thetest. I think she was thinking that this was the routine time to doit. But, everything I have read states that kids with DS usuallyaren't screened until 3-5 years old for this because it is too hard totell at such a young age, with all the cartilage, etc.Has anyone had any experience with this? We are completely panicked,to say the least.Thanks in advance, mom to 4 yo Ethan and 2 yo (DS)Back to top Reply to sender <mailto:cathyshaw02?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> | Reply to group <mailto:Multiples-DS ?Subject=Re: Atlantoaxial%20instability%20screening-POSITIVE> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxcG05OGo3BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16257> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTM2azlvOGtiBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNTcEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI1Nw--> (2) 5b. Re: Atlantoaxial instability screening-POSITIVE <http://groups.yahoo.com/group/Multiples-DS/message/16261;_ylc=X3oDMTJxMTV1NnNnBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NDE2MzM3NA--> Posted by: "SETREB@..." SETREB@... <mailto:SETREB@...?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> Fri Jul 28, 2006 8:30 pm (PST) Hi ,I don't know if this helps but I will share my experience. had this test at the typical age as they say "3" and it came back with a small space in her spine so she needed to see the specialist. I, too, was somewhat panicked. But when we got there he checked her out, mostly wanted to see her walking and had her x-rayed. He then said the space was so small that there was nothing that needed to be done. And that was it.Have a nice weekend and good luck.Sherrillmom to Jillian 8 1/2, and (D/s) 4 1/2Back to top Reply to sender <mailto:SETREB@...?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> | Reply to group <mailto:Multiples-DS ?Subject= Re%3A%20Atlantoaxial%20instability%20screening-POSITIVE> | Reply via web post <http://groups.yahoo.com/group/Multiples-DS/post;_ylc=X3oDMTJxaWtkNjF2BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3JwbHkEc3RpbWUDMTE1NDE2MzM3NA--?act=reply & messageNum=16261> Messages in this topic <http://groups.yahoo.com/group/Multiples-DS/message/16257;_ylc=X3oDMTM2bTcwMjEzBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEbXNnSWQDMTYyNjEEc2VjA2Rtc2cEc2xrA3Z0cGMEc3RpbWUDMTE1NDE2MzM3NAR0cGNJZAMxNjI1Nw--> (2) Recent Activity* 5 New Photos <http://groups.yahoo.com/group/Multiples-DS/spnew;_ylc=X3oDMTJlbzZmamszBF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA3Z0bARzbGsDdnBob3QEc3RpbWUDMTE1NDE2MzM3NA--> Visit Your Group <http://groups.yahoo.com/group/Multiples-DS;_ylc=X3oDMTJkbnBudXQ3BF9TAzk3MzU5NzE1BGdycElkAzI4NDc0MwRncnBzcElkAzE2MDAwNDIwNTQEc2VjA3Z0bARzbGsDdmdocARzdGltZQMxMTU0MTYzMzc0>

[Guest guest]

Cindi

I am Sadden by the news of your loss .To lose a child is very hard and

to loose such a special angel .I pray that the pain you feel will

become easyer and that Gods love will enbrace Grace " s siblene and ease

there pain I ask that the lord sends them angels to look over them .

(((((Hugs )))))

Gods Blessings

Angie

Grandmother now mother to

Isable Kerry (ds)2y8m

1y 7m

[Guest guest]

I am so deeply sorry for the loss of your sweet little girl. Many

prayers for you and your family. I am so, so sorry.

mom to 4 yo Ethan and 2 yo (DS)

[Guest guest]

I cannot imagine a greater loss than

losing a child. Please know you are in my thoughts and prayers.

Suze (mom to Nic and Kris

Identical/13/Opitz and Gavin 5/DS)

..

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