Re: Check-in Day!, 8/6/2007, 12:00 am

[Guest guest]

This list has been quiet lately!

The boys are enjoying their summer. We joined a gym, and they both are really enjoying swimming. Davey just finished extended school year, and the new school year starts in 3 weeks. I can not believe the boys are going to be in 2nd grade!

Hope everyone is well.

mom to Amy 19, Kelsey 17, Davey 7 and Will 7

On 6 Aug 2007 02:57:05 -0000, Multiples-DS <

Multiples-DS > wrote:

Reminder from:

Multiples-DS Yahoo! Group

Title:

Check-in Day!

Date:

Monday August 6, 2007

Time:

All Day

Repeats:

This event repeats every other month on the first Monday.

Notes:

If you haven't posted in over 8 weeks - you are now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update! Lurking is NO longer allowed on this group!!

Thanks!

Get reminders on your mobile, Yahoo! Messenger, and email.Edit reminder options

Copyright © 2007 Yahoo! Inc. All Rights Reserved |

Terms of Service | Privacy Policy

[Guest guest]

We have had a crazy month. I was on bed rest but am now on "light" bed rest. Last week had open heart surgery and amazingly was sent home after 3 days (they actually were going to after 2 days but I didn't feel comfortable with that). The day before his surgery he finished summer school and starts back to school in 4 weeks. At this point we are just working at keeping him entertained since he can't be around any kids. Miriam -3 DS Boy due 10/19/07 Verissimo wrote: This list has been quiet lately! The boys are enjoying their summer. We joined a gym, and they both are really enjoying swimming. Davey just finished extended school year, and the new school year starts in 3 weeks. I can not believe the boys are going to be in 2nd grade! Hope everyone is well. mom to Amy 19, Kelsey 17, Davey 7 and Will 7 On 6 Aug 2007 02:57:05 -0000, Multiples-DS < Multiples-DS > wrote: Reminder from: Multiples-DS Yahoo! Group Title: Check-in Day! Date: Monday August 6, 2007 Time: All Day Repeats: This event repeats every other month on the first Monday. Notes: If you haven't posted in over 8 weeks - you are now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update! Lurking is NO longer allowed on this group!! Thanks! Get reminders on your mobile, Yahoo! Messenger, and email.Edit reminder options Copyright © 2007 Yahoo! Inc. All Rights Reserved | Terms of Service | Privacy Policy

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[Guest guest]

We have been enjoying the summer, we took a vacation

in Hershey, Pa and a couple trips to the shore.

is still in ESY and will not be done until the

3rd week of Aug. She is in a multi-disabled program

and it's going very well. She will be in the same

program in Sept for a full day. , our typical

son, will be in full day kingergarten in Sept.

Mom of (DS) and -age 5

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[Guest guest]

and Caden are now 7 months old (4 months corrected). They are both progressing well and hitting their milestones on time. We are trying and trying to put as many calories into as we can. She is 2 inches shorter than Caden, but 5 pounds lighter. Caden weighs 17 lbs 4 oz and weighs 12 lbs 2 oz. She is my petite baby! We have been in therapy for 3 months now correcting Caden's torticollis, and it is slowly but surely working. Our next challenge is that he may have to wear a helmet for his plagiocephally. They are about $4,000. YIKES! has been in ECI (Early Childhood Intervention) and is doing everything that she should for her age. Caden has been on solids for about 2 months, but the pediatrician thinks isn't ready yet. Everything else is just great!

~ Mom to (DS) & Caden 7 months

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[Guest guest]

is doing pretty good. We haven't got any word on an appointment for the Osteoporosis Clinic yet it sure has been a difficult process for some reason. We have never had such a long wait to get in to any clinic that has needed to get into. We were told by his nuerologist that recent studies done on persons taking tegretol that it could cause Osteoporsis and they did do a bone density test on and found he does have it really bad. has been on Tegretol for over 20 yrs. He is now off of it and is on Keppra. He has also been on Valproic Acid for as long as he was on tegretol. Both have been for seizures. We have been giving him calcium with vitamin D. I will be calling again to see what the hold up is. The weather is really hot here in KS and has a Dental appointment this Wed in Kansas City. Just glad the van has air conditioning. Judy & Bob Parents to 27yrs. the joy of our lives who happens to have ds

and multiple disabilities and 35yrs. Miriam Kang wrote: We have had a crazy month. I was on bed rest but am now on "light" bed rest. Last week had open heart surgery and amazingly was sent home after 3 days (they actually were going to after 2 days but I didn't feel comfortable with that). The day before his surgery he finished summer school and starts back to school in 4 weeks. At this point we are just working at keeping him entertained since he can't be around any

kids. Miriam -3 DS Boy due 10/19/07 Verissimo <justelougmail> wrote: This list has been quiet lately! The boys are enjoying their summer. We joined a gym, and they both are really enjoying swimming. Davey just finished extended school year, and the new school year starts in 3 weeks. I can not believe the boys are going to be in 2nd grade! Hope everyone is well. mom to Amy 19, Kelsey 17, Davey 7 and Will 7 On 6 Aug 2007 02:57:05 -0000, Multiples-DS

< Multiples-DS > wrote: Reminder from: Multiples-DS Yahoo! Group Title: Check-in Day! Date: Monday August 6, 2007 Time: All Day Repeats: This event repeats every other month on the first Monday. Notes: If you haven't posted in over 8 weeks - you are

now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update! Lurking is NO longer allowed on this group!! Thanks! Get reminders on your mobile, Yahoo! Messenger, and email.Edit reminder options Copyright © 2007 Yahoo! Inc. All Rights Reserved | Terms of Service | Privacy Policy Shape Yahoo! in your own image. Join our Network Research Panel today!

[Guest guest]

Summer is flying by! Sara (DS), age 12-1/2, said this a.m., she would rather be in school than going to all of these camps I have her in; although, she had a great time at her horse camp this a.m, which goes through Thursday. At least one out of three of my children will be excited for school. She attended an overnight camp for 6 days in July for children with disabilities. She also said she had lots of fun, there. It is a catch-22 for me. If she is home, she is very stubborn and wants to watch hours of DVD's, so I keep her moving and then DVD time is rest time. She is also involved in TaeKwanDo, this summer.

A while ago, I had an Off-Topic item that I was a perfect match for a boy, age 16, who had Non-Hodgkins Lymphoma, so I was going to give stem cell to him to help him heal (a procedure being done, now, more often than bone marrow donation). Anyway, he passed away two weeks ago, before he even got to the point of being able to receive the donation, for which we were all set up to take place July 31st. Even though, I knew him only by his age, that he was male and his diagnosis, I was very sad. Thank you all for your thoughts and prayers.

Marcia

Mom to Sara (DS) and 12 and Lucas 16Get a sneak peek of the all-new AOL.com.

[Guest guest]

Like everyone else, we are preparing for school, this year Kindergarten

for the boys. Luke will go 1/2 day K (we don't have full day) and 1/2

day ECSE. We've had a busy summer. We took Luke to Cincinnati

Children's Hospital DS clinic which was wonderful. I would recommend

that to anyone. We saw a developmental ped, Speech therapist and OT.

They all gave us very specific suggestions, including good resources in

books and websites. I also sent his IEP to the educational consultant

there and she has given me specific ways to expand upon his current

goals. It is a place we can visit yearly just to get an evaluation of

how he's doing. I'm excited about having them as a resource.

I just got back from the NDSC conference in Kansas City this past

weekend, so I'm all fired up from the great speakers I heard there. It

was very inspirational and informative. It would be nice if everyone

had a chance to attend one of those conferences one time. It was so

neat to see all the young people there dressed up for the formal dance

Saturday night. It appeared that they all had a wonderful time.

--mom to Luke (DS) and Jake, age 5

[Guest guest]

Hi Everyone,

It's been a crazy summer so far.

I started the kids in Sunday School about a month ago and support Haley

& Nikki in their class with attending, being appropriate (ie standing in

line, etc.) and developing peer relationships. It's kinda painful

sometimes to see so many things that typical kids can do and here the

girls are, scribbling rather than coloring, groaning rather than using

words, getting into things when other children don't, being disruptive

at times, and running all over music/signing class when all the other

kids are attending. When they act out, the other kids look at them

strange. It's tough. Afterwards, when I collect all 3 of them to go

through the fellowship hall and out to parking, the kids are darting in

3 different directions away from me. People just gawk and don't know

what to do. They've never seen the likes of these kids - trying to

figure out if they are triplets or twins; do they really both have Down

Syndrome, etc.? I have to beg for help to keep them from getting hit in

the parking lot. It seems like with each Sunday, the girls are getting

better. And it seems like folks are starting to help me keep them from

running out a back door when I'm guarding a front door in music class,

etc. I'm hopeful that the church will continue to embrace the children

and learn how to help them, thus fading me out of the classroom so I can

maybe volunteer with infants in the nursery, etc. It would be nice to

take care of other people's babies for an hour each week.

We had mediation on July 20 and it had a favorable outcome. I sent a

formal complaint to the Dept. of Education for each daughter which was

very " high level " (not whining which is easy for me to do) and it

detailed all violations I could prove from school documentation and tape

recordings. This is what I presented at the mediation and ultimately,

we got everything we asked for and more... I was very organized at the

table with a 3 " book of all documents for each daughter (all tabbed for

easy reference) and a 3rd 3 " book of all school emails and research

tabbed by each therapy, including education. My 4th notebook was just

an 1 " thick with priority information, ie, the complaint, a mediation

solutions sheet I put together, the kindergarten drafts I typed on 2

pages and then added all parent input to this (with justifications),

etc. I could tell that the special education director was not pleased

with the complaint and wanted to remedy it as soon as possible. The

school continually refusing to assist with critical life skills, ie,

toileting, feeding, etc., has got to be embarrassing. She knows what

the law is. The big problem with their school was lack of staff

training on the law and lack of appropriate staff support. We now have

a new IEP team and a new school, thank goodness, all of the PLOPs and

goals are being rewritten with parent input considered prior to the IEP

meeting which needs to happen by August 17 so there's much to be done

prior to this date.

The kids are wearing me out at home. They are playing " dodge ball " with

me - one will do something and as I handle that, the next one does

something so I have to handle that at the same time, then the third will

do something to try to drive me insane. This goes on constantly ALL

DAY... When I get on the phone to book an appt, etc, that's when all

bets are off - will climb on an antique dresser in the livingroom 5

times in a row, manage to get around a barricaded screen and into the

fireplace, do anything he knows he can't get away with when I'm not on

the phone...

Have I written enough! There's so much I haven't written - girls

pulling all their clothes off last night in bed and peeing all over the

place so I did " midnight baths " ; a ton of appts & referrals to figure

out; medical stuff going on; Man! I'm so worn out... I cry every

week... This is so hard... Those folks that say God won't give you

anymore than you can handle... yeah, yeah, yeah... They're usually the

ones with the " cush-life. " Ha-Ha! Even my own family - ugh! My Mom

just had a family reunion at her house that's 1 1/2 hours away but we

couldn't go. Mom doesn't put stuff away so the kids will be more safe,

plus she has a pool that's not fenced in. If my family " got it " and

assigned themselves to our kids at Mom's house to keep them from

drowning or " redecorating " her home, it might be doable. My family's

just very self-absorbed... So we always miss out on family

get-togethers, and even taking them to the park, etc. It's so unfair to

the kids... Whatever... I'm complaining - sorry...

Thank God for you guys! Did I mention it was you guys that helped give

me the backbone to advocate for my kids at the mediation and prepare

customized K goals for the girls? You all rock! I'm very grateful...

Love,

Granata

Mom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr son

Multiples-DS wrote:

> Reminder from: *Multiples-DS Yahoo! Group

> <http://groups.yahoo.com/group/Multiples-DS/cal>*

>

> Title: Check-in Day!

>

> Date: Monday August 6, 2007

> Time: All Day

> Repeats: This event repeats every other month on the first Monday.

> Notes: If you haven't posted in over 8 weeks - you are now at risk

> for being removed from Multiples-DS! Please check-in with the group by

> posting to the group -- even a small update!

>

> Lurking is NO longer allowed on this group!!

>

> Thanks!

>

> Get reminders on your mobile, Yahoo! Messenger, and email.

> Edit reminder options

> <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>

>

> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> All Rights

> Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> |

> Privacy Policy <http://privacy.yahoo.com/privacy/us>

>

>

[Guest guest]

Dear Marcia,

I'm so sorry to hear the news of the young man that passed away. It

must be hard for you. Thank you for including us in this, even though

it is off topic. You and this young man are in my prayers.

Sincerely,

Granata

Rrietmann@... wrote:

>

> Summer is flying by! Sara (DS), age 12-1/2, said this a.m., she would

> rather be in school than going to all of these camps I have her in;

> although, she had a great time at her horse camp this a.m, which goes

> through Thursday. At least one out of three of my children will be

> excited for school. She attended an overnight camp for 6 days in

> July for children with disabilities. She also said she had lots of

> fun, there. It is a catch-22 for me. If she is home, she is very

> stubborn and wants to watch hours of DVD's, so I keep her moving and

> then DVD time is rest time. She is also involved in TaeKwanDo, this

> summer.

>

> A while ago, I had an Off-Topic item that I was a perfect match for a

> boy, age 16, who had Non-Hodgkins Lymphoma, so I was going to give

> stem cell to him to help him heal (a procedure being done, now, more

> often than bone marrow donation). Anyway, he passed away two weeks

> ago, before he even got to the point of being able to receive the

> donation, for which we were all set up to take place July 31st. Even

> though, I knew him only by his age, that he was male and his

> diagnosis, I was very sad. Thank you all for your thoughts and prayers.

>

> Marcia

> Mom to Sara (DS) and 12 and Lucas 16

>

>

>

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

> Get a sneak peek of the all-new AOL.com

> <http://discover.aol.com/memed/aolcom30tour/?ncid=AOLAOF00020000000982>.

>

[Guest guest]

,

Hi! My name is Beth Schafer I am a mom 7. Our last 2

are twins that are 4 and they are both DS. I have not

taken part in the group but could not help responding

to you. I found a phrase that says " God does not give

us what we can handle. God helps us handle what we are

given. " That makes so much more sense to me!

I have the same problem with the twins going evey

which way! I have told my husband whom I love dearly,

that I am not going to attend everything on our

agenda! For one thing it is too much on the boys and

it is too much on their 41 year old mother!! Most

people are totally understandable and the ones that

aren't I will be more then happy to take my shoes off,

smile at them, and ask them if they wear a size 7-1/2

shoe??!! We are human and we love our children and yes

it can tear our hearts out to see them get gawked at!

But at least you are out there trying! My hat is

tipped to you! Some parents don't do anything! Have

you asked a few of the older kids in church to help

you? I am not sure what denomination you are but at

our catholic church I run the nursery and we assign

8th graders to help so they may use it for church

hours for confirmation. Not only does it help the 8th

graders toward their goal but it also introduces them

to the " WORLD " of DS! It also opens their hearts to

special needs and acceptance at church! You would not

believe how thankful they are that you let them help!!

Good luck to you and I think we all feel your pain and

heartache! No one else could right??

--- Granata wrote:

> Hi Everyone,

>

> It's been a crazy summer so far.

>

> I started the kids in Sunday School about a month

> ago and support Haley

> & Nikki in their class with attending, being

> appropriate (ie standing in

> line, etc.) and developing peer relationships.

> It's kinda painful

> sometimes to see so many things that typical kids

> can do and here the

> girls are, scribbling rather than coloring, groaning

> rather than using

> words, getting into things when other children

> don't, being disruptive

> at times, and running all over music/signing class

> when all the other

> kids are attending. When they act out, the other

> kids look at them

> strange. It's tough. Afterwards, when I collect

> all 3 of them to go

> through the fellowship hall and out to parking, the

> kids are darting in

> 3 different directions away from me. People just

> gawk and don't know

> what to do. They've never seen the likes of these

> kids - trying to

> figure out if they are triplets or twins; do they

> really both have Down

> Syndrome, etc.? I have to beg for help to keep them

> from getting hit in

> the parking lot. It seems like with each Sunday,

> the girls are getting

> better. And it seems like folks are starting to

> help me keep them from

> running out a back door when I'm guarding a front

> door in music class,

> etc. I'm hopeful that the church will continue to

> embrace the children

> and learn how to help them, thus fading me out of

> the classroom so I can

> maybe volunteer with infants in the nursery, etc.

> It would be nice to

> take care of other people's babies for an hour each

> week.

>

> We had mediation on July 20 and it had a favorable

> outcome. I sent a

> formal complaint to the Dept. of Education for each

> daughter which was

> very " high level " (not whining which is easy for me

> to do) and it

> detailed all violations I could prove from school

> documentation and tape

> recordings. This is what I presented at the

> mediation and ultimately,

> we got everything we asked for and more... I was

> very organized at the

> table with a 3 " book of all documents for each

> daughter (all tabbed for

> easy reference) and a 3rd 3 " book of all school

> emails and research

> tabbed by each therapy, including education. My 4th

> notebook was just

> an 1 " thick with priority information, ie, the

> complaint, a mediation

> solutions sheet I put together, the kindergarten

> drafts I typed on 2

> pages and then added all parent input to this (with

> justifications),

> etc. I could tell that the special education

> director was not pleased

> with the complaint and wanted to remedy it as soon

> as possible. The

> school continually refusing to assist with critical

> life skills, ie,

> toileting, feeding, etc., has got to be

> embarrassing. She knows what

> the law is. The big problem with their school was

> lack of staff

> training on the law and lack of appropriate staff

> support. We now have

> a new IEP team and a new school, thank goodness, all

> of the PLOPs and

> goals are being rewritten with parent input

> considered prior to the IEP

> meeting which needs to happen by August 17 so

> there's much to be done

> prior to this date.

>

> The kids are wearing me out at home. They are

> playing " dodge ball " with

> me - one will do something and as I handle that, the

> next one does

> something so I have to handle that at the same time,

> then the third will

> do something to try to drive me insane. This goes

> on constantly ALL

> DAY... When I get on the phone to book an appt,

> etc, that's when all

> bets are off - will climb on an antique dresser

> in the livingroom 5

> times in a row, manage to get around a barricaded

> screen and into the

> fireplace, do anything he knows he can't get away

> with when I'm not on

> the phone...

>

> Have I written enough! There's so much I haven't

> written - girls

> pulling all their clothes off last night in bed and

> peeing all over the

> place so I did " midnight baths " ; a ton of appts &

> referrals to figure

> out; medical stuff going on; Man! I'm so worn

> out... I cry every

> week... This is so hard... Those folks that say

> God won't give you

> anymore than you can handle... yeah, yeah, yeah...

> They're usually the

> ones with the " cush-life. " Ha-Ha! Even my own

> family - ugh! My Mom

> just had a family reunion at her house that's 1 1/2

> hours away but we

> couldn't go. Mom doesn't put stuff away so the kids

> will be more safe,

> plus she has a pool that's not fenced in. If my

> family " got it " and

> assigned themselves to our kids at Mom's house to

> keep them from

> drowning or " redecorating " her home, it might be

> doable. My family's

> just very self-absorbed... So we always miss out on

> family

> get-togethers, and even taking them to the park,

> etc. It's so unfair to

> the kids... Whatever... I'm complaining - sorry...

>

>

> Thank God for you guys! Did I mention it was you

> guys that helped give

> me the backbone to advocate for my kids at the

> mediation and prepare

> customized K goals for the girls? You all rock!

> I'm very grateful...

>

> Love,

> Granata

> Mom to Haley & Nikki, 4 yr twin girls, both w/DS,

> and , 3 yr son

>

>

> Multiples-DS wrote:

> > Reminder from: *Multiples-DS Yahoo! Group

> > <http://groups.yahoo.com/group/Multiples-DS/cal>*

> >

> > Title: Check-in Day!

> >

> > Date: Monday August 6, 2007

> > Time: All Day

> > Repeats: This event repeats every other month

> on the first Monday.

> > Notes: If you haven't posted in over 8 weeks -

> you are now at risk

> > for being removed from Multiples-DS! Please

> check-in with the group by

> > posting to the group -- even a small update!

> >

> > Lurking is NO longer allowed on this group!!

> >

> > Thanks!

> >

> > Get reminders on your mobile, Yahoo! Messenger,

> and email.

> > Edit reminder options

> >

>

<http://groups.yahoo.com/group/Multiples-DS/cal?v=75>

> >

> > Copyright © 2007 Yahoo! Inc.

> <http://www.yahoo.com> All Rights

> > Reserved | Terms of Service

> <http://docs.yahoo.com/info/terms/> |

> > Privacy Policy

> <http://privacy.yahoo.com/privacy/us>

> >

> >

>

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[Guest guest]

, You sound like an amazing mom and advocate for you kids, they are so lucky to have you. My son is 3 and 3 months so we have a little ways to go until kindergarten but I was wondering what all your issues are/were and what exactly you included in your meeting info? I have such issues with ' speech or should I say lack of speech (we have had 3 IEPs since he turned 3 in March) and the feeding, potty training and NO self skills like dressing. I am hoping to learn from others before too much time goes by because I didn't with early intervention and he suffered from lack of that. Thanks so much, Miriam Granata wrote: Hi Everyone,It's been a crazy summer so far. I started the kids in Sunday School about a month ago and support Haley & Nikki in their class with attending, being appropriate (ie standing in line, etc.) and developing peer relationships. It's kinda painful sometimes to see so many things that typical kids can do and here the girls are, scribbling rather than coloring, groaning rather than using words, getting into things when other children don't, being disruptive at times, and running all over music/signing class when all the other kids are attending. When they act out, the other kids look at them strange. It's tough. Afterwards, when I collect all 3 of them to go through the fellowship hall and out to parking, the kids are

darting in 3 different directions away from me. People just gawk and don't know what to do. They've never seen the likes of these kids - trying to figure out if they are triplets or twins; do they really both have Down Syndrome, etc.? I have to beg for help to keep them from getting hit in the parking lot. It seems like with each Sunday, the girls are getting better. And it seems like folks are starting to help me keep them from running out a back door when I'm guarding a front door in music class, etc. I'm hopeful that the church will continue to embrace the children and learn how to help them, thus fading me out of the classroom so I can maybe volunteer with infants in the nursery, etc. It would be nice to take care of other people's babies for an hour each week. We had mediation on July 20 and it had a favorable outcome. I sent a formal complaint to the Dept. of Education for each daughter which was very "high

level" (not whining which is easy for me to do) and it detailed all violations I could prove from school documentation and tape recordings. This is what I presented at the mediation and ultimately, we got everything we asked for and more... I was very organized at the table with a 3" book of all documents for each daughter (all tabbed for easy reference) and a 3rd 3" book of all school emails and research tabbed by each therapy, including education. My 4th notebook was just an 1" thick with priority information, ie, the complaint, a mediation solutions sheet I put together, the kindergarten drafts I typed on 2 pages and then added all parent input to this (with justifications), etc. I could tell that the special education director was not pleased with the complaint and wanted to remedy it as soon as possible. The school continually refusing to assist with critical life skills, ie, toileting, feeding, etc., has got to

be embarrassing. She knows what the law is. The big problem with their school was lack of staff training on the law and lack of appropriate staff support. We now have a new IEP team and a new school, thank goodness, all of the PLOPs and goals are being rewritten with parent input considered prior to the IEP meeting which needs to happen by August 17 so there's much to be done prior to this date.The kids are wearing me out at home. They are playing "dodge ball" with me - one will do something and as I handle that, the next one does something so I have to handle that at the same time, then the third will do something to try to drive me insane. This goes on constantly ALL DAY... When I get on the phone to book an appt, etc, that's when all bets are off - will climb on an antique dresser in the livingroom 5 times in a row, manage to get around a barricaded screen and into the fireplace, do anything he knows he

can't get away with when I'm not on the phone...Have I written enough! There's so much I haven't written - girls pulling all their clothes off last night in bed and peeing all over the place so I did "midnight baths"; a ton of appts & referrals to figure out; medical stuff going on; Man! I'm so worn out... I cry every week... This is so hard... Those folks that say God won't give you anymore than you can handle... yeah, yeah, yeah... They're usually the ones with the "cush-life." Ha-Ha! Even my own family - ugh! My Mom just had a family reunion at her house that's 1 1/2 hours away but we couldn't go. Mom doesn't put stuff away so the kids will be more safe, plus she has a pool that's not fenced in. If my family "got it" and assigned themselves to our kids at Mom's house to keep them from drowning or "redecorating" her home, it might be doable. My family's just very self-absorbed... So we always miss out

on family get-togethers, and even taking them to the park, etc. It's so unfair to the kids... Whatever... I'm complaining - sorry... Thank God for you guys! Did I mention it was you guys that helped give me the backbone to advocate for my kids at the mediation and prepare customized K goals for the girls? You all rock! I'm very grateful...Love, GranataMom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr sonMultiples-DS wrote:> Reminder from: *Multiples-DS Yahoo! Group > <http://groups.yahoo.com/group/Multiples-DS/cal>*> > Title: Check-in Day!> > Date: Monday August 6, 2007> Time: All Day> Repeats: This event repeats every other month on the first Monday.> Notes: If you haven't posted in

over 8 weeks - you are now at risk > for being removed from Multiples-DS! Please check-in with the group by > posting to the group -- even a small update!>> Lurking is NO longer allowed on this group!!>> Thanks!> > Get reminders on your mobile, Yahoo! Messenger, and email.> Edit reminder options > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> All Rights > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> | > Privacy Policy <http://privacy.yahoo.com/privacy/us>>>

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, take heart and realize what a great job you are doing. You should be very proud of your impressive accomplishment with the girls' school. And I hope you can create a little church family that feels supportive. Don't be afraid to ask for the help you need. People are probably overwhelmed by just watching such a beehive of activity and don't exactly know what is the best way to help. Hang in there. Joyce , Texas grandma to Vaughan's , , and Will (DS) and Jake Granata wrote: Hi Everyone,It's been a crazy summer so far. I started the kids in Sunday School about a month ago and support Haley & Nikki in their class with attending, being appropriate (ie standing in line, etc.) and developing peer relationships. It's kinda painful sometimes to see so many things that typical kids can do and here the girls are, scribbling rather than coloring, groaning rather than using words, getting into things when other children don't, being disruptive at times, and running all over music/signing class when all the other kids are attending. When they act out, the other kids look at them strange. It's tough. Afterwards, when I collect all 3 of them to go through the fellowship hall and out to parking, the kids are darting in 3 different directions away from me. People just gawk and don't know

what to do. They've never seen the likes of these kids - trying to figure out if they are triplets or twins; do they really both have Down Syndrome, etc.? I have to beg for help to keep them from getting hit in the parking lot. It seems like with each Sunday, the girls are getting better. And it seems like folks are starting to help me keep them from running out a back door when I'm guarding a front door in music class, etc. I'm hopeful that the church will continue to embrace the children and learn how to help them, thus fading me out of the classroom so I can maybe volunteer with infants in the nursery, etc. It would be nice to take care of other people's babies for an hour each week. We had mediation on July 20 and it had a favorable outcome. I sent a formal complaint to the Dept. of Education for each daughter which was very "high level" (not whining which is easy for me to do) and it detailed all violations I

could prove from school documentation and tape recordings. This is what I presented at the mediation and ultimately, we got everything we asked for and more... I was very organized at the table with a 3" book of all documents for each daughter (all tabbed for easy reference) and a 3rd 3" book of all school emails and research tabbed by each therapy, including education. My 4th notebook was just an 1" thick with priority information, ie, the complaint, a mediation solutions sheet I put together, the kindergarten drafts I typed on 2 pages and then added all parent input to this (with justifications), etc. I could tell that the special education director was not pleased with the complaint and wanted to remedy it as soon as possible. The school continually refusing to assist with critical life skills, ie, toileting, feeding, etc., has got to be embarrassing. She knows what the law is. The big problem with their school

was lack of staff training on the law and lack of appropriate staff support. We now have a new IEP team and a new school, thank goodness, all of the PLOPs and goals are being rewritten with parent input considered prior to the IEP meeting which needs to happen by August 17 so there's much to be done prior to this date.The kids are wearing me out at home. They are playing "dodge ball" with me - one will do something and as I handle that, the next one does something so I have to handle that at the same time, then the third will do something to try to drive me insane. This goes on constantly ALL DAY... When I get on the phone to book an appt, etc, that's when all bets are off - will climb on an antique dresser in the livingroom 5 times in a row, manage to get around a barricaded screen and into the fireplace, do anything he knows he can't get away with when I'm not on the phone...Have I written enough!

There's so much I haven't written - girls pulling all their clothes off last night in bed and peeing all over the place so I did "midnight baths"; a ton of appts & referrals to figure out; medical stuff going on; Man! I'm so worn out... I cry every week... This is so hard... Those folks that say God won't give you anymore than you can handle... yeah, yeah, yeah... They're usually the ones with the "cush-life." Ha-Ha! Even my own family - ugh! My Mom just had a family reunion at her house that's 1 1/2 hours away but we couldn't go. Mom doesn't put stuff away so the kids will be more safe, plus she has a pool that's not fenced in. If my family "got it" and assigned themselves to our kids at Mom's house to keep them from drowning or "redecorating" her home, it might be doable. My family's just very self-absorbed... So we always miss out on family get-togethers, and even taking them to the park, etc. It's so unfair

to the kids... Whatever... I'm complaining - sorry... Thank God for you guys! Did I mention it was you guys that helped give me the backbone to advocate for my kids at the mediation and prepare customized K goals for the girls? You all rock! I'm very grateful...Love, GranataMom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr sonMultiples-DS wrote:> Reminder from: *Multiples-DS Yahoo! Group > <http://groups.yahoo.com/group/Multiples-DS/cal>*> > Title: Check-in Day!> > Date: Monday August 6, 2007> Time: All Day> Repeats: This event repeats every other month on the first Monday.> Notes: If you haven't posted in over 8 weeks - you are now at risk > for being removed from Multiples-DS!

Please check-in with the group by > posting to the group -- even a small update!>> Lurking is NO longer allowed on this group!!>> Thanks!> > Get reminders on your mobile, Yahoo! Messenger, and email.> Edit reminder options > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> All Rights > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> | > Privacy Policy <http://privacy.yahoo.com/privacy/us>>>

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

Not much going on here. We have really done nothing this summer....now

school is getting ready to start up again. Alyssa will be 9th,

6th, Jarod 1st, and ECI preschool again. is having tubes

placed agin this month. His fell out and the fluid is building up

again. He still doesn't talk or walk. He has started this whining thing

for the last few weeks.....so annoying. Dr said he was fine....nothing

wrong with him.....so maybe a nice new behavior....hmmmm.

Deanna mom to

Alyssa, 14

, 11

Jarod, 7

(DS) 4 1/2

~i~Jordan (DS) 1/20/03-2/2/03

Check-in Day!, 8/6/2007, 12:00 am

Reminder from: Multiples-DS Yahoo! Group Title: Check-in

Day! Date: Monday August 6, 2007Time: All Day

Repeats: This event repeats every other

month on the first Monday.Notes: If you haven't posted in over 8 weeks

- you are now at risk for being removed from Multiples-DS! Please

check-in with the group by posting to the group -- even a small update!

Lurking is NO longer allowed on this group!!

Thanks!

 Get reminders on your mobile, Yahoo! Messenger, and email.

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 Yahoo! Inc. All Rights Reserved |

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[Guest guest]

Good Morning,

My name is Mabel Comas, mom to 8 years old triplets Carolina, Cristian and a-ds. We live in land. Our summer is been going pretty good. My Mom and my nieces just left after three weeks. The kids had a good time. a had a great year. I am glad we decided to move her from school. She is been included in everything, th eother school all they did was kept her in a special education room. They said she was reading 75 words and when we moved her to our neighborhood school they had to start almost all over. Plus I never was comfortable with her teacher, the aids and the school principal. Her teacher in this school is a great teacher and we are blessed to have her. a is been using short sentences but she lets you know everything. Reading she is been doing an excellent job. Her writing is been improving a lot. We are very proud of her. Carolina and Cristian are doing excellent too. Welcome to all the new members. Have a great day.

Mabel, mom to Carolina, Cristian and a-ds

From: Multiples-DS To: Multiples-DS Date: Mon, 6 Aug 2007 02:57:05 +0000Subject: Check-in Day!, 8/6/2007, 12:00 am

Reminder from:

Multiples-DS Yahoo! Group

Title:

Check-in Day!

Date:

Monday August 6, 2007

Time:

All Day

Repeats:

This event repeats every other month on the first Monday.

Notes:

If you haven't posted in over 8 weeks - you are now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update! Lurking is NO longer allowed on this group!!Thanks!

Get reminders on your mobile, Yahoo! Messenger, and email.Edit reminder optionsCopyright © 2007 Yahoo! Inc. All Rights Reserved | Terms of Service | Privacy Policy Recharge--play some free games. Win cool prizes too! Play It!

[Guest guest]

,

My daughter had plagiocephaly and had to wear

a helmet. If you have any questions, feel free to

email me. Our insurance had covered the helmet,

however it must be stated that the helmet has to be

used for medical reasons (the insurance company

apparently thinks it's cosmetic).

________________________________________________________________________________\

____

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[Guest guest]

Thank you, Joyce, for your kind words... -

Joyce wrote:

> , take heart and realize what a great job you are doing. You

> should be very proud of your impressive accomplishment with the girls'

> school. And I hope you can create a little church family that feels

> supportive. Don't be afraid to ask for the help you need. People are

> probably overwhelmed by just watching such a beehive of activity and

> don't exactly know what is the best way to help. Hang in there.

>

> Joyce , Texas grandma to Vaughan's , , and

> Will (DS) and Jake

>

> */ Granata /* wrote:

>

> Hi Everyone,

>

> It's been a crazy summer so far.

>

> I started the kids in Sunday School about a month ago and support

> Haley

> & Nikki in their class with attending, being appropriate (ie

> standing in

> line, etc.) and developing peer relationships. It's kinda painful

> sometimes to see so many things that typical kids can do and here the

> girls are, scribbling rather than coloring, groaning rather than

> using

> words, getting into things when other children don't, being

> disruptive

> at times, and running all over music/signing class when all the other

> kids are attending. When they act out, the other kids look at them

> strange. It's tough. Afterwards, when I collect all 3 of them to go

> through the fellowship hall and out to parking, the kids are

> darting in

> 3 different directions away from me. People just gawk and don't know

> what to do. They've never seen the likes of these kids - trying to

> figure out if they are triplets or twins; do they really both have

> Down

> Syndrome, etc.? I have to beg for help to keep them from getting

> hit in

> the parking lot. It seems like with each Sunday, the girls are

> getting

> better. And it seems like folks are starting to help me keep them

> from

> running out a back door when I'm guarding a front door in music

> class,

> etc. I'm hopeful that the church will continue to embrace the

> children

> and learn how to help them, thus fading me out of the classroom so

> I can

> maybe volunteer with infants in the nursery, etc. It would be nice to

> take care of other people's babies for an hour each week.

>

> We had mediation on July 20 and it had a favorable outcome. I sent a

> formal complaint to the Dept. of Education for each daughter which

> was

> very " high level " (not whining which is easy for me to do) and it

> detailed all violations I could prove from school documentation

> and tape

> recordings. This is what I presented at the mediation and ultimately,

> we got everything we asked for and more... I was very organized at

> the

> table with a 3 " book of all documents for each daughter (all

> tabbed for

> easy reference) and a 3rd 3 " book of all school emails and research

> tabbed by each therapy, including education. My 4th notebook was just

> an 1 " thick with priority information, ie, the complaint, a mediation

> solutions sheet I put together, the kindergarten drafts I typed on 2

> pages and then added all parent input to this (with justifications),

> etc. I could tell that the special education director was not pleased

> with the complaint and wanted to remedy it as soon as possible. The

> school continually refusing to assist with critical life skills, ie,

> toileting, feeding, etc., has got to be embarrassing. She knows what

> the law is. The big problem with their school was lack of staff

> training on the law and lack of appropriate staff support. We now

> have

> a new IEP team and a new school, thank goodness, all of the PLOPs and

> goals are being rewritten with parent input considered prior to

> the IEP

> meeting which needs to happen by August 17 so there's much to be done

> prior to this date.

>

> The kids are wearing me out at home. They are playing " dodge ball "

> with

> me - one will do something and as I handle that, the next one does

> something so I have to handle that at the same time, then the

> third will

> do something to try to drive me insane. This goes on constantly ALL

> DAY... When I get on the phone to book an appt, etc, that's when all

> bets are off - will climb on an antique dresser in the

> livingroom 5

> times in a row, manage to get around a barricaded screen and into the

> fireplace, do anything he knows he can't get away with when I'm

> not on

> the phone...

>

> Have I written enough! There's so much I haven't written - girls

> pulling all their clothes off last night in bed and peeing all

> over the

> place so I did " midnight baths " ; a ton of appts & referrals to figure

> out; medical stuff going on; Man! I'm so worn out... I cry every

> week... This is so hard... Those folks that say God won't give you

> anymore than you can handle... yeah, yeah, yeah... They're usually

> the

> ones with the " cush-life. " Ha-Ha! Even my own family - ugh! My Mom

> just had a family reunion at her house that's 1 1/2 hours away but we

> couldn't go. Mom doesn't put stuff away so the kids will be more

> safe,

> plus she has a pool that's not fenced in. If my family " got it " and

> assigned themselves to our kids at Mom's house to keep them from

> drowning or " redecorating " her home, it might be doable. My family's

> just very self-absorbed... So we always miss out on family

> get-togethers, and even taking them to the park, etc. It's so

> unfair to

> the kids... Whatever... I'm complaining - sorry...

>

> Thank God for you guys! Did I mention it was you guys that helped

> give

> me the backbone to advocate for my kids at the mediation and prepare

> customized K goals for the girls? You all rock! I'm very grateful...

>

> Love,

> Granata

> Mom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr son

>

> Multiples-DS

> <mailto:Multiples-DS%40yahoogroups.com> wrote:

> > Reminder from: *Multiples-DS Yahoo! Group

> > <http://groups.yahoo.com/group/Multiples-DS/cal

> <http://groups.yahoo.com/group/Multiples-DS/cal>>*

> >

> > Title: Check-in Day!

> >

> > Date: Monday August 6, 2007

> > Time: All Day

> > Repeats: This event repeats every other month on the first Monday.

> > Notes: If you haven't posted in over 8 weeks - you are now at risk

> > for being removed from Multiples-DS! Please check-in with the

> group by

> > posting to the group -- even a small update!

> >

> > Lurking is NO longer allowed on this group!!

> >

> > Thanks!

> >

> > Get reminders on your mobile, Yahoo! Messenger, and email.

> > Edit reminder options

> > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75

> <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>

> >

> > Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com

> <http://www.yahoo.com/>> All Rights

> > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/

> <http://docs.yahoo.com/info/terms/>> |

> > Privacy Policy <http://privacy.yahoo.com/privacy/us

> <http://privacy.yahoo.com/privacy/us>>

> >

> >

>

>

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

> Got a little couch potato?

> Check out fun summer activities for kids.

>

<http://us.rd.yahoo.com/evt=48248/*http://search.yahoo.com/search?fr=oni_on_mail\

& p=summer+activities+for+kids & cs=bz>

>

>

[Guest guest]

Hi Everyone, QUESTION: At what age did your child with DS start putting words together (2+ words) and form sentences? example: when (3 yrs.) sees a red ball he knows it is red and knows it is ball and will label it one of those but can't say red ball. He will say red and ball as clear as day but when I tell him to say red ball he says eh ba or ah ooh, totally non related to what we are saying. He learns more and more words every day but just doesn't seem to correctly use them and his speech at pre-k is useless. Thanks, Miriam Granata wrote: Hi Everyone,It's been a crazy summer so far. I started the kids in Sunday School about a month ago and support Haley & Nikki in their class with attending, being appropriate (ie standing in line, etc.) and developing peer relationships. It's kinda painful sometimes to see so many things that typical kids can do and here the girls are, scribbling rather than coloring, groaning rather than using words, getting into things when other children don't, being disruptive at times, and running all over music/signing class when all the other kids are attending. When they act out, the other kids look at them strange. It's tough. Afterwards, when I collect all 3 of them to go through the fellowship hall and out to parking, the kids are darting in 3 different directions away from me. People just gawk and don't

know what to do. They've never seen the likes of these kids - trying to figure out if they are triplets or twins; do they really both have Down Syndrome, etc.? I have to beg for help to keep them from getting hit in the parking lot. It seems like with each Sunday, the girls are getting better. And it seems like folks are starting to help me keep them from running out a back door when I'm guarding a front door in music class, etc. I'm hopeful that the church will continue to embrace the children and learn how to help them, thus fading me out of the classroom so I can maybe volunteer with infants in the nursery, etc. It would be nice to take care of other people's babies for an hour each week. We had mediation on July 20 and it had a favorable outcome. I sent a formal complaint to the Dept. of Education for each daughter which was very "high level" (not whining which is easy for me to do) and it detailed all

violations I could prove from school documentation and tape recordings. This is what I presented at the mediation and ultimately, we got everything we asked for and more... I was very organized at the table with a 3" book of all documents for each daughter (all tabbed for easy reference) and a 3rd 3" book of all school emails and research tabbed by each therapy, including education. My 4th notebook was just an 1" thick with priority information, ie, the complaint, a mediation solutions sheet I put together, the kindergarten drafts I typed on 2 pages and then added all parent input to this (with justifications), etc. I could tell that the special education director was not pleased with the complaint and wanted to remedy it as soon as possible. The school continually refusing to assist with critical life skills, ie, toileting, feeding, etc., has got to be embarrassing. She knows what the law is. The big problem with

their school was lack of staff training on the law and lack of appropriate staff support. We now have a new IEP team and a new school, thank goodness, all of the PLOPs and goals are being rewritten with parent input considered prior to the IEP meeting which needs to happen by August 17 so there's much to be done prior to this date.The kids are wearing me out at home. They are playing "dodge ball" with me - one will do something and as I handle that, the next one does something so I have to handle that at the same time, then the third will do something to try to drive me insane. This goes on constantly ALL DAY... When I get on the phone to book an appt, etc, that's when all bets are off - will climb on an antique dresser in the livingroom 5 times in a row, manage to get around a barricaded screen and into the fireplace, do anything he knows he can't get away with when I'm not on the phone...Have I

written enough! There's so much I haven't written - girls pulling all their clothes off last night in bed and peeing all over the place so I did "midnight baths"; a ton of appts & referrals to figure out; medical stuff going on; Man! I'm so worn out... I cry every week... This is so hard... Those folks that say God won't give you anymore than you can handle... yeah, yeah, yeah... They're usually the ones with the "cush-life." Ha-Ha! Even my own family - ugh! My Mom just had a family reunion at her house that's 1 1/2 hours away but we couldn't go. Mom doesn't put stuff away so the kids will be more safe, plus she has a pool that's not fenced in. If my family "got it" and assigned themselves to our kids at Mom's house to keep them from drowning or "redecorating" her home, it might be doable. My family's just very self-absorbed... So we always miss out on family get-togethers, and even taking them to the park, etc.

It's so unfair to the kids... Whatever... I'm complaining - sorry... Thank God for you guys! Did I mention it was you guys that helped give me the backbone to advocate for my kids at the mediation and prepare customized K goals for the girls? You all rock! I'm very grateful...Love, GranataMom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr sonMultiples-DS wrote:> Reminder from: *Multiples-DS Yahoo! Group > <http://groups.yahoo.com/group/Multiples-DS/cal>*> > Title: Check-in Day!> > Date: Monday August 6, 2007> Time: All Day> Repeats: This event repeats every other month on the first Monday.> Notes: If you haven't posted in over 8 weeks - you are now at risk > for being removed from

Multiples-DS! Please check-in with the group by > posting to the group -- even a small update!>> Lurking is NO longer allowed on this group!!>> Thanks!> > Get reminders on your mobile, Yahoo! Messenger, and email.> Edit reminder options > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> All Rights > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> | > Privacy Policy <http://privacy.yahoo.com/privacy/us>>>

Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

[Guest guest]

, I understand your frustrations. My daughter, too, was a "runner" -- it got to the point that I couldn't take my eyes off her for a second anywhere (the constant grabbing glasses and pushing/pulling hair didn't help either....) -- and that was a particularly bad age for her. Her triplet brothers actually confessed to me once that they thought that all kids with DS pushed other kids. I can assure you that things do get better -- she still runs to some extent, but now it's far more predictable/appropriate (e.g., to pet someone's dog, introduce herself, etc.). Plus the negative behaviors have all but disappeared. My advice to you is to be especially consistent with your girls -- in terms of consequences/reactions, etc. My daughter knows that, e.g., if she runs to the neighbor's house (which she did every second she could a couple of years ago, and now does only very rarely), she spends time

sitting alone on the stairway. If she acts up in a shoe store, she doesn't get a pair of shoes. I know how overwhelmed you already are (and, once you've dragged everyone to the shoe store and picked out shoes, you don't want to have to come back....), but things will turn around. I also try and think about why she's doing what she's doing -- and offer more appropriate alternatives (e.g., instead of pulling on earrings: talk about them, show them yours, etc.). In terms of the listening in class, remember that it's also up to the teacher to keep your kids engaged -- which may mean directing questions to them, adding high-interest songs/music, sitting them in the front, etc. Hang in there... Sheryl -- mom to Caleb, Ethan and Louisa (DS) Granata wrote: Hi Everyone,It's been a crazy summer so far. I started the kids in Sunday School about a month ago and support Haley & Nikki in their class with attending, being appropriate (ie standing in line, etc.) and developing peer relationships. It's kinda painful sometimes to see so many things that typical kids can do and here the girls are, scribbling rather than coloring, groaning rather than using words, getting into things when other children don't, being disruptive at times, and running all over music/signing class when all the other

kids are attending. When they act out, the other kids look at them strange. It's tough. Afterwards, when I collect all 3 of them to go through the fellowship hall and out to parking, the kids are darting in 3 different directions away from me. People just gawk and don't know what to do. They've never seen the likes of these kids - trying to figure out if they are triplets or twins; do they really both have Down Syndrome, etc.? I have to beg for help to keep them from getting hit in the parking lot. It seems like with each Sunday, the girls are getting better. And it seems like folks are starting to help me keep them from running out a back door when I'm guarding a front door in music class, etc. I'm hopeful that the church will continue to embrace the children and learn how to help them, thus fading me out of the classroom so I can maybe volunteer with infants in the nursery, etc. It would be nice to take care of

other people's babies for an hour each week. We had mediation on July 20 and it had a favorable outcome. I sent a formal complaint to the Dept. of Education for each daughter which was very "high level" (not whining which is easy for me to do) and it detailed all violations I could prove from school documentation and tape recordings. This is what I presented at the mediation and ultimately, we got everything we asked for and more... I was very organized at the table with a 3" book of all documents for each daughter (all tabbed for easy reference) and a 3rd 3" book of all school emails and research tabbed by each therapy, including education. My 4th notebook was just an 1" thick with priority information, ie, the complaint, a mediation solutions sheet I put together, the kindergarten drafts I typed on 2 pages and then added all parent input to this (with justifications), etc. I could tell that the special

education director was not pleased with the complaint and wanted to remedy it as soon as possible. The school continually refusing to assist with critical life skills, ie, toileting, feeding, etc., has got to be embarrassing. She knows what the law is. The big problem with their school was lack of staff training on the law and lack of appropriate staff support. We now have a new IEP team and a new school, thank goodness, all of the PLOPs and goals are being rewritten with parent input considered prior to the IEP meeting which needs to happen by August 17 so there's much to be done prior to this date.The kids are wearing me out at home. They are playing "dodge ball" with me - one will do something and as I handle that, the next one does something so I have to handle that at the same time, then the third will do something to try to drive me insane. This goes on constantly ALL DAY... When I get on the phone to book

an appt, etc, that's when all bets are off - will climb on an antique dresser in the livingroom 5 times in a row, manage to get around a barricaded screen and into the fireplace, do anything he knows he can't get away with when I'm not on the phone...Have I written enough! There's so much I haven't written - girls pulling all their clothes off last night in bed and peeing all over the place so I did "midnight baths"; a ton of appts & referrals to figure out; medical stuff going on; Man! I'm so worn out... I cry every week... This is so hard... Those folks that say God won't give you anymore than you can handle... yeah, yeah, yeah... They're usually the ones with the "cush-life." Ha-Ha! Even my own family - ugh! My Mom just had a family reunion at her house that's 1 1/2 hours away but we couldn't go. Mom doesn't put stuff away so the kids will be more safe, plus she has a pool that's not fenced in. If my

family "got it" and assigned themselves to our kids at Mom's house to keep them from drowning or "redecorating" her home, it might be doable. My family's just very self-absorbed... So we always miss out on family get-togethers, and even taking them to the park, etc. It's so unfair to the kids... Whatever... I'm complaining - sorry... Thank God for you guys! Did I mention it was you guys that helped give me the backbone to advocate for my kids at the mediation and prepare customized K goals for the girls? You all rock! I'm very grateful...Love, GranataMom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr sonMultiples-DS wrote:> Reminder from: *Multiples-DS Yahoo! Group > <http://groups.yahoo.com/group/Multiples-DS/cal>*> > Title: Check-in Day!> > Date: Monday August 6, 2007> Time: All Day> Repeats: This event repeats every other month on the first Monday.> Notes: If you haven't posted in over 8 weeks - you are now at risk > for being removed from Multiples-DS! Please check-in with the group by > posting to the group -- even a small update!>> Lurking is NO longer allowed on this group!!>> Thanks!> > Get reminders on your mobile, Yahoo! Messenger, and email.> Edit reminder options > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> All Rights

> Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> | > Privacy Policy <http://privacy.yahoo.com/privacy/us>>> Sheryl Knapp Literacy Advocates www.LiteracyAdvocates.com

[Guest guest]

Hi All,

We started Kindergarten yesterday; fully

included with an aide. From what I know, it went well. A reporter

from our local newspaper was there. To recap our summer, we went to Disneyland and used the guest assistance pass. It

was AMAZING. We felt like celebrities! Gavin rode EVERY ride and

met all the characters. Absolutely a dream come true. Then Gavin spent a

week at camp, his second year doing this. He loved it and can’t

wait to go again. Then we spent a week on the beach and I am still

cleaning up sand! My twins started high school yesterday and that feels

kind of huge… could I really be that old already? And that’s

the haps around here!

I love hearing from everyone and catching

up!

Suze (mom to Nicolas and Kristopher Identical/14/Opitz

and Gavin 6/DS)

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

Sent: Sunday, August 05, 2007 7:57

PM

To: Multiples-DS

Subject: Check-in

Day!, 8/6/2007, 12:00 am

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Checked by AVG Free Edition.

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[Guest guest]

It's difficult to pinpoint a particular age since kids vary so much -- they progress at different rates and excel in different areas (e.g., my daughter began stringing 2-3 words together in preschool, yet didn't jump until she was 7!). I think the important points to keep in mind are that: (1) as mentioned above, kids excel in different areas. This is probably partially attributable to where there parents' put the emphasis (or which therapist was strongest) -- but also because it is very difficult to advance in multiple arenas simultaneously. A therapist once told me that kids with disabilities typically "rotate" between disciplines (i.e., they'll make big gains in PT, then OT, then SLP, etc.). (2) kids with special needs often progress in "plateaus" rather than smoothly. A typical child generally makes steady gains -- vs. a child with DS who might not seem to be "getting" a topic, then suddenly s/he

will grasp it completely. For instance, my daughter couldn't use any pronouns (I, we, she, etc.) -- then suddenly started using ALL of her pronouns! And -- speaking for my daughter anyway -- once she learns something, she never loses it! In response to your question, it's not at all unusual for a child with DS your son's age to be speaking only in single words (some have no language at all at that age). Hope that helps a little... Sheryl Miriam Kang wrote: Hi Everyone, QUESTION: At what age did your child with DS start putting words together (2+ words) and form sentences? example: when (3 yrs.) sees a red ball he knows it is red and knows it is ball and will label it one of those but can't say red ball. He will say red and ball as clear as day but when I tell him to say red ball he says eh ba or ah ooh, totally non related to what we are saying. He learns more and more words every day but just doesn't seem to correctly use them and his speech at pre-k is useless. Thanks, Miriam Granata <juliesurecode> wrote: Hi Everyone,It's been a crazy summer so far. I started the kids in Sunday School about

a month ago and support Haley & Nikki in their class with attending, being appropriate (ie standing in line, etc.) and developing peer relationships. It's kinda painful sometimes to see so many things that typical kids can do and here the girls are, scribbling rather than coloring, groaning rather than using words, getting into things when other children don't, being disruptive at times, and running all over music/signing class when all the other kids are attending. When they act out, the other kids look at them strange. It's tough. Afterwards, when I collect all 3 of them to go through the fellowship hall and out to parking, the kids are darting in 3 different directions away from me. People just gawk and don't know what to do. They've never seen the likes of these kids - trying to figure out if they are triplets or twins; do they really both have Down Syndrome, etc.? I have to beg for help to keep them from getting

hit in the parking lot. It seems like with each Sunday, the girls are getting better. And it seems like folks are starting to help me keep them from running out a back door when I'm guarding a front door in music class, etc. I'm hopeful that the church will continue to embrace the children and learn how to help them, thus fading me out of the classroom so I can maybe volunteer with infants in the nursery, etc. It would be nice to take care of other people's babies for an hour each week. We had mediation on July 20 and it had a favorable outcome. I sent a formal complaint to the Dept. of Education for each daughter which was very "high level" (not whining which is easy for me to do) and it detailed all violations I could prove from school documentation and tape recordings. This is what I presented at the mediation and ultimately, we got everything we asked for and more... I was very organized at the table with a 3"

book of all documents for each daughter (all tabbed for easy reference) and a 3rd 3" book of all school emails and research tabbed by each therapy, including education. My 4th notebook was just an 1" thick with priority information, ie, the complaint, a mediation solutions sheet I put together, the kindergarten drafts I typed on 2 pages and then added all parent input to this (with justifications), etc. I could tell that the special education director was not pleased with the complaint and wanted to remedy it as soon as possible. The school continually refusing to assist with critical life skills, ie, toileting, feeding, etc., has got to be embarrassing. She knows what the law is. The big problem with their school was lack of staff training on the law and lack of appropriate staff support. We now have a new IEP team and a new school, thank goodness, all of the PLOPs and goals are being rewritten with parent input

considered prior to the IEP meeting which needs to happen by August 17 so there's much to be done prior to this date.The kids are wearing me out at home. They are playing "dodge ball" with me - one will do something and as I handle that, the next one does something so I have to handle that at the same time, then the third will do something to try to drive me insane. This goes on constantly ALL DAY... When I get on the phone to book an appt, etc, that's when all bets are off - will climb on an antique dresser in the livingroom 5 times in a row, manage to get around a barricaded screen and into the fireplace, do anything he knows he can't get away with when I'm not on the phone...Have I written enough! There's so much I haven't written - girls pulling all their clothes off last night in bed and peeing all over the place so I did "midnight baths"; a ton of appts & referrals to figure out; medical

stuff going on; Man! I'm so worn out... I cry every week... This is so hard... Those folks that say God won't give you anymore than you can handle... yeah, yeah, yeah... They're usually the ones with the "cush-life." Ha-Ha! Even my own family - ugh! My Mom just had a family reunion at her house that's 1 1/2 hours away but we couldn't go. Mom doesn't put stuff away so the kids will be more safe, plus she has a pool that's not fenced in. If my family "got it" and assigned themselves to our kids at Mom's house to keep them from drowning or "redecorating" her home, it might be doable. My family's just very self-absorbed... So we always miss out on family get-togethers, and even taking them to the park, etc. It's so unfair to the kids... Whatever... I'm complaining - sorry... Thank God for you guys! Did I mention it was you guys that helped give me the backbone to advocate for my kids at the mediation and prepare

customized K goals for the girls? You all rock! I'm very grateful...Love, GranataMom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr sonMultiples-DS wrote:> Reminder from: *Multiples-DS Yahoo! Group > <http://groups.yahoo.com/group/Multiples-DS/cal>*> > Title: Check-in Day!> > Date: Monday August 6, 2007> Time: All Day> Repeats: This event repeats every other month on the first Monday.> Notes: If you haven't posted in over 8 weeks - you are now at risk > for being removed from Multiples-DS! Please check-in with the group by > posting to the group -- even a small update!>> Lurking is NO longer allowed on this group!!>> Thanks!> > Get reminders on your

mobile, Yahoo! Messenger, and email.> Edit reminder options > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> All Rights > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> | > Privacy Policy <http://privacy.yahoo.com/privacy/us>>> Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center. Sheryl Knapp Literacy Advocates www.LiteracyAdvocates.com

[Guest guest]

Hi everyone.

This is my first message except my presentation I wrote, so I´ll start

with a recap... I am a mom to twin boys, Mattis (DS) and Love. They

are 1,5 years old, and we live outside Stockholm, Sweden (Northern

Europe). I thought i was reasonably fluent in English, but in this

group you use lots of abbreviations I don´t really get, but I´ll

understand more and more the more I read! I hope I write so you can

understand me...

We are having a really nice summer, me and (the boys´s father) is

taking july and august off work, and we spend most of the time at home

with the kids, is also building a new terrace. We go swimming in

the nearby sea sometimes, visit friends, and have friends over at our

house. Really soft and calm!

Love (not DS) is learning to talk and communicate with signs more and

more, and Mattis is trying hard but so far he only says 2-3 words. He

knows a cow says mmmmm (for muu) and a book is called booo. I think

that´s good work when you are only 1,5 yrs old with DS!!

We use sign-language to support Mattis developing in communication

(dont know if I´m using right words here...), that is more or less

standard here, is it common at all in US?

Earlier this week we got to lend a walking chair (word again??) so

that Mattis can get around upright a little more, he has been SO

frustrated when Love is running around him in circles. Today he walked

around the house and walked and walked with his walking chair and

seemed to really enjoy it!

The boys will start " dagis " - Swedish for day nursery according to my

dictionary, but you use preschool/kindergarten? I don´t really get the

differences, sorry... - however, they start " dagis " next week. They

are going go be in a group of totally 14 kids where 3 including Mattis

has DS. There are 3 persons working there as regular pedagogues (if

there weren´t any kids with special needs) and there will be 3 more

persons working with the 3 DS kids in particular. So 6 adults for 14

kids, that is amazingly good, at least here. How is it where you live?

And another amazing thing is that I am told that one of the other

DS-boys at " dagis " also is a twin! That family is supposed to live

nearby here, I have seen them, but it will be fun to also meet them!

I read about the struggles some of you have with your kids, their

health, and how you try so hard to get and do the best for them. I

feel with you and I send my best wishes and think about you! When I

think life is hard on me sometimes, I think about you guys and then I

don´t feel alone in it, and that helps a lot. So thank you so much for

being out there and sharing your lives and thoughts with me/us.

As always, we put our pictures here -

http://www.hjerten.com/mattis_love, if you want to see how we look and

live.

/ - mom to Mattis (DS) and Love, twin boys 1,5 years.

[Guest guest]

Hi Miriam - Does have dyspraxia? Your description sounds like

a motor planning thing... The girls have this big-time. Just takes a

lot of frequent, intense spurts of drilling, and of course, time &

patience... Just my 2 cents, course I don't proclaim to have an " SPL

degree. " :-) Granata

Sheryl Knapp wrote:

> It's difficult to pinpoint a particular age since kids vary so much --

> they progress at different rates and excel in different areas (e.g.,

> my daughter began stringing 2-3 words together in preschool, yet

> didn't jump until she was 7!). I think the important points to keep

> in mind are that:

> (1) as mentioned above, kids excel in different areas. This is

> probably partially attributable to where there parents' put the

> emphasis (or which therapist was strongest) -- but also because it is

> very difficult to advance in multiple arenas simultaneously. A

> therapist once told me that kids with disabilities typically " rotate "

> between disciplines (i.e., they'll make big gains in PT, then OT, then

> SLP, etc.).

> (2) kids with special needs often progress in " plateaus " rather than

> smoothly. A typical child generally makes steady gains -- vs. a child

> with DS who might not seem to be " getting " a topic, then suddenly s/he

> will grasp it completely. For instance, my daughter couldn't use any

> pronouns (I, we, she, etc.) -- then suddenly started using ALL of her

> pronouns! And -- speaking for my daughter anyway -- once she learns

> something, she never loses it!

>

> In response to your question, it's not at all unusual for a child with

> DS your son's age to be speaking only in single words (some have no

> language at all at that age).

>

> Hope that helps a little...

>

> Sheryl

>

> */Miriam Kang /* wrote:

>

> Hi Everyone,

> QUESTION: At what age did your child with DS start putting words

> together (2+ words) and form sentences? example: when (3

> yrs.) sees a red ball he knows it is red and knows it is ball and

> will label it one of those but can't say red ball. He will say red

> and ball as clear as day but when I tell him to say red ball he

> says eh ba or ah ooh, totally non related to what we are saying.

> He learns more and more words every day but just doesn't seem to

> correctly use them and his speech at pre-k is useless.

>

> Thanks,

> Miriam

>

> */ Granata /* wrote:

>

> Hi Everyone,

>

> It's been a crazy summer so far.

>

> I started the kids in Sunday School about a month ago and

> support Haley

> & Nikki in their class with attending, being appropriate (ie

> standing in

> line, etc.) and developing peer relationships. It's kinda painful

> sometimes to see so many things that typical kids can do and

> here the

> girls are, scribbling rather than coloring, groaning rather

> than using

> words, getting into things when other children don't, being

> disruptive

> at times, and running all over music/signing class when all

> the other

> kids are attending. When they act out, the other kids look at

> them

> strange. It's tough. Afterwards, when I collect all 3 of them

> to go

> through the fellowship hall and out to parking, the kids are

> darting in

> 3 different directions away from me. People just gawk and

> don't know

> what to do. They've never seen the likes of these kids -

> trying to

> figure out if they are triplets or twins; do they really both

> have Down

> Syndrome, etc.? I have to beg for help to keep them from

> getting hit in

> the parking lot. It seems like with each Sunday, the girls are

> getting

> better. And it seems like folks are starting to help me keep

> them from

> running out a back door when I'm guarding a front door in

> music class,

> etc. I'm hopeful that the church will continue to embrace the

> children

> and learn how to help them, thus fading me out of the

> classroom so I can

> maybe volunteer with infants in the nursery, etc. It would be

> nice to

> take care of other people's babies for an hour each week.

>

> We had mediation on July 20 and it had a favorable outcome. I

> sent a

> formal complaint to the Dept. of Education for each daughter

> which was

> very " high level " (not whining which is easy for me to do) and it

> detailed all violations I could prove from school

> documentation and tape

> recordings. This is what I presented at the mediation and

> ultimately,

> we got everything we asked for and more... I was very

> organized at the

> table with a 3 " book of all documents for each daughter (all

> tabbed for

> easy reference) and a 3rd 3 " book of all school emails and

> research

> tabbed by each therapy, including education. My 4th notebook

> was just

> an 1 " thick with priority information, ie, the complaint, a

> mediation

> solutions sheet I put together, the kindergarten drafts I

> typed on 2

> pages and then added all parent input to this (with

> justifications),

> etc. I could tell that the special education director was not

> pleased

> with the complaint and wanted to remedy it as soon as

> possible. The

> school continually refusing to assist with critical life

> skills, ie,

> toileting, feeding, etc., has got to be embarrassing. She

> knows what

> the law is. The big problem with their school was lack of staff

> training on the law and lack of appropriate staff support. We

> now have

> a new IEP team and a new school, thank goodness, all of the

> PLOPs and

> goals are being rewritten with parent input considered prior

> to the IEP

> meeting which needs to happen by August 17 so there's much to

> be done

> prior to this date.

>

> The kids are wearing me out at home. They are playing " dodge

> ball " with

> me - one will do something and as I handle that, the next one

> does

> something so I have to handle that at the same time, then the

> third will

> do something to try to drive me insane. This goes on

> constantly ALL

> DAY... When I get on the phone to book an appt, etc, that's

> when all

> bets are off - will climb on an antique dresser in the

> livingroom 5

> times in a row, manage to get around a barricaded screen and

> into the

> fireplace, do anything he knows he can't get away with when

> I'm not on

> the phone...

>

> Have I written enough! There's so much I haven't written - girls

> pulling all their clothes off last night in bed and peeing all

> over the

> place so I did " midnight baths " ; a ton of appts & referrals to

> figure

> out; medical stuff going on; Man! I'm so worn out... I cry every

> week... This is so hard... Those folks that say God won't give

> you

> anymore than you can handle... yeah, yeah, yeah... They're

> usually the

> ones with the " cush-life. " Ha-Ha! Even my own family - ugh! My

> Mom

> just had a family reunion at her house that's 1 1/2 hours away

> but we

> couldn't go. Mom doesn't put stuff away so the kids will be

> more safe,

> plus she has a pool that's not fenced in. If my family " got

> it " and

> assigned themselves to our kids at Mom's house to keep them from

> drowning or " redecorating " her home, it might be doable. My

> family's

> just very self-absorbed... So we always miss out on family

> get-togethers, and even taking them to the park, etc. It's so

> unfair to

> the kids... Whatever... I'm complaining - sorry...

>

> Thank God for you guys! Did I mention it was you guys that

> helped give

> me the backbone to advocate for my kids at the mediation and

> prepare

> customized K goals for the girls? You all rock! I'm very

> grateful...

>

> Love,

> Granata

> Mom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3

> yr son

>

> Multiples-DS

> <mailto:Multiples-DS%40yahoogroups.com> wrote:

> > Reminder from: *Multiples-DS Yahoo! Group

> > <http://groups.yahoo.com/group/Multiples-DS/cal

> <http://groups.yahoo.com/group/Multiples-DS/cal>>*

> >

> > Title: Check-in Day!

> >

> > Date: Monday August 6, 2007

> > Time: All Day

> > Repeats: This event repeats every other month on the first

> Monday.

> > Notes: If you haven't posted in over 8 weeks - you are now

> at risk

> > for being removed from Multiples-DS! Please check-in with

> the group by

> > posting to the group -- even a small update!

> >

> > Lurking is NO longer allowed on this group!!

> >

> > Thanks!

> >

> > Get reminders on your mobile, Yahoo! Messenger, and email.

> > Edit reminder options

> > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75

> <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>

> >

> > Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com

> <http://www.yahoo.com/>> All Rights

> > Reserved | Terms of Service

> <http://docs.yahoo.com/info/terms/

> <http://docs.yahoo.com/info/terms/>> |

> > Privacy Policy <http://privacy.yahoo.com/privacy/us

> <http://privacy.yahoo.com/privacy/us>>

> >

> >

>

>

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

> Park yourself in front of a world of choices in alternative vehicles.

> Visit the Yahoo! Auto Green Center.

>

<http://us.rd.yahoo.com/evt=48246/*http://autos.yahoo.com/green_center/;_ylc=X3o\

DMTE5cDF2bXZzBF9TAzk3MTA3MDc2BHNlYwNtYWlsdGFncwRzbGsDZ3JlZW4tY2VudGVy>

>

>

>

>

>

> Sheryl Knapp

> Literacy Advocates

> www.LiteracyAdvocates.com <http://www.LiteracyAdvocates.com>

>

>

[Guest guest]

Hi , I have been told by two people he does but because of his age a couple have said you can't label that yet. I think he probably does. How much speech does yours get? Curious on others thoughts too. Miriam Granata wrote: Hi Miriam - Does have dyspraxia? Your description sounds like a motor planning thing... The girls have this big-time. Just takes a lot of frequent, intense spurts of drilling, and of course, time &

patience... Just my 2 cents, course I don't proclaim to have an "SPL degree." :-) GranataSheryl Knapp wrote:> It's difficult to pinpoint a particular age since kids vary so much -- > they progress at different rates and excel in different areas (e.g., > my daughter began stringing 2-3 words together in preschool, yet > didn't jump until she was 7!). I think the important points to keep > in mind are that:> (1) as mentioned above, kids excel in different areas. This is > probably partially attributable to where there parents' put the > emphasis (or which therapist was strongest) -- but also because it is > very difficult to advance in multiple arenas simultaneously. A > therapist once told me that kids with disabilities typically "rotate" > between disciplines (i.e., they'll make big gains in PT, then OT, then > SLP, etc.). > (2) kids with special needs often

progress in "plateaus" rather than > smoothly. A typical child generally makes steady gains -- vs. a child > with DS who might not seem to be "getting" a topic, then suddenly s/he > will grasp it completely. For instance, my daughter couldn't use any > pronouns (I, we, she, etc.) -- then suddenly started using ALL of her > pronouns! And -- speaking for my daughter anyway -- once she learns > something, she never loses it!> > In response to your question, it's not at all unusual for a child with > DS your son's age to be speaking only in single words (some have no > language at all at that age).> > Hope that helps a little...> > Sheryl>> */Miriam Kang <miriamekang>/* wrote:>> Hi Everyone,> QUESTION: At what age did your child with DS start putting words> together (2+

words) and form sentences? example: when (3> yrs.) sees a red ball he knows it is red and knows it is ball and> will label it one of those but can't say red ball. He will say red> and ball as clear as day but when I tell him to say red ball he> says eh ba or ah ooh, totally non related to what we are saying.> He learns more and more words every day but just doesn't seem to> correctly use them and his speech at pre-k is useless.> > Thanks,> Miriam>> */ Granata <juliesurecode>/* wrote:>> Hi Everyone,>> It's been a crazy summer so far.>> I started the kids in Sunday School about a month ago and> support Haley> & Nikki in their class with attending, being appropriate (ie> standing in> line, etc.) and developing peer relationships. It's kinda painful>

sometimes to see so many things that typical kids can do and> here the> girls are, scribbling rather than coloring, groaning rather> than using> words, getting into things when other children don't, being> disruptive> at times, and running all over music/signing class when all> the other> kids are attending. When they act out, the other kids look at> them> strange. It's tough. Afterwards, when I collect all 3 of them> to go> through the fellowship hall and out to parking, the kids are> darting in> 3 different directions away from me. People just gawk and> don't know> what to do. They've never seen the likes of these kids -> trying to> figure out if they are triplets or twins; do they really both> have Down> Syndrome, etc.? I have to beg for help to keep them from> getting hit in> the parking lot. It seems like with each

Sunday, the girls are> getting> better. And it seems like folks are starting to help me keep> them from> running out a back door when I'm guarding a front door in> music class,> etc. I'm hopeful that the church will continue to embrace the> children> and learn how to help them, thus fading me out of the> classroom so I can> maybe volunteer with infants in the nursery, etc. It would be> nice to> take care of other people's babies for an hour each week.>> We had mediation on July 20 and it had a favorable outcome. I> sent a> formal complaint to the Dept. of Education for each daughter> which was> very "high level" (not whining which is easy for me to do) and it> detailed all violations I could prove from school> documentation and tape> recordings. This is what I presented at the mediation and> ultimately,> we got

everything we asked for and more... I was very> organized at the> table with a 3" book of all documents for each daughter (all> tabbed for> easy reference) and a 3rd 3" book of all school emails and> research> tabbed by each therapy, including education. My 4th notebook> was just> an 1" thick with priority information, ie, the complaint, a> mediation> solutions sheet I put together, the kindergarten drafts I> typed on 2> pages and then added all parent input to this (with> justifications),> etc. I could tell that the special education director was not> pleased> with the complaint and wanted to remedy it as soon as> possible. The> school continually refusing to assist with critical life> skills, ie,> toileting, feeding, etc., has got to be embarrassing. She> knows what> the law is. The big problem with their school

was lack of staff> training on the law and lack of appropriate staff support. We> now have> a new IEP team and a new school, thank goodness, all of the> PLOPs and> goals are being rewritten with parent input considered prior> to the IEP> meeting which needs to happen by August 17 so there's much to> be done> prior to this date.>> The kids are wearing me out at home. They are playing "dodge> ball" with> me - one will do something and as I handle that, the next one> does> something so I have to handle that at the same time, then the> third will> do something to try to drive me insane. This goes on> constantly ALL> DAY... When I get on the phone to book an appt, etc, that's> when all> bets are off - will climb on an antique dresser in the> livingroom 5> times in a row, manage to get around a barricaded screen

and> into the> fireplace, do anything he knows he can't get away with when> I'm not on> the phone...>> Have I written enough! There's so much I haven't written - girls> pulling all their clothes off last night in bed and peeing all> over the> place so I did "midnight baths"; a ton of appts & referrals to> figure> out; medical stuff going on; Man! I'm so worn out... I cry every> week... This is so hard... Those folks that say God won't give> you> anymore than you can handle... yeah, yeah, yeah... They're> usually the> ones with the "cush-life." Ha-Ha! Even my own family - ugh! My> Mom> just had a family reunion at her house that's 1 1/2 hours away> but we> couldn't go. Mom doesn't put stuff away so the kids will be> more safe,> plus she has a pool that's not fenced in. If my family "got> it" and> assigned

themselves to our kids at Mom's house to keep them from> drowning or "redecorating" her home, it might be doable. My> family's> just very self-absorbed... So we always miss out on family> get-togethers, and even taking them to the park, etc. It's so> unfair to> the kids... Whatever... I'm complaining - sorry...>> Thank God for you guys! Did I mention it was you guys that> helped give> me the backbone to advocate for my kids at the mediation and> prepare> customized K goals for the girls? You all rock! I'm very> grateful...>> Love,> Granata> Mom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3> yr son>> Multiples-DS > <mailto:Multiples-DS%40yahoogroups.com> wrote:> > Reminder from: *Multiples-DS Yahoo!

Group> > <http://groups.yahoo.com/group/Multiples-DS/cal> <http://groups.yahoo.com/group/Multiples-DS/cal>>*> >> > Title: Check-in Day!> >> > Date: Monday August 6, 2007> > Time: All Day> > Repeats: This event repeats every other month on the first> Monday.> > Notes: If you haven't posted in over 8 weeks - you are now> at risk> > for being removed from Multiples-DS! Please check-in with> the group by> > posting to the group -- even a small update!> >> > Lurking is NO longer allowed on this group!!> >> > Thanks!> >> > Get reminders on your mobile, Yahoo! Messenger, and email.> > Edit reminder options> >

<http://groups.yahoo.com/group/Multiples-DS/cal?v=75> <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> >> > Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> <http://www.yahoo.com/>> All Rights> > Reserved | Terms of Service> <http://docs.yahoo.com/info/terms/> <http://docs.yahoo.com/info/terms/>> |> > Privacy Policy <http://privacy.yahoo.com/privacy/us> <http://privacy.yahoo.com/privacy/us>>> >> >>>> ----------------------------------------------------------> Park yourself in front of a world of choices in alternative vehicles.> Visit the Yahoo! Auto Green Center.> <http://us.rd.yahoo.com/evt=48246/*http://autos.yahoo.com/green_center/;_ylc=X3oDMTE5cDF2bXZzBF9TAzk3MTA3MDc2BHNlYwNtYWlsdGFncwRzbGsDZ3JlZW4tY2VudGVy>>>>>>> Sheryl Knapp> Literacy Advocates> www.LiteracyAdvocates.com <http://www.LiteracyAdvocates.com>>

>

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[Guest guest]

Hello all, I attended Libby Kumin's pre-conference session on speech and she spent a lot of time talking about apraxia in our kids...some good resources she listed were an article in Disability Solutions it is available on the web the volume numbers etc are: Disability Solutions 5 (2) 1-16. Also there is an article available through the National Down Syndrome Congress website she wrote as well. Granata wrote: Hi Miriam - Does have dyspraxia? Your description sounds like a motor planning thing... The girls have this big-time. Just takes a lot of frequent, intense spurts of drilling, and of course, time & patience... Just my 2 cents, course I don't proclaim to have an "SPL degree." :-) GranataSheryl Knapp wrote:> It's difficult to pinpoint a particular age since kids vary so much -- > they progress at different rates and excel in different areas (e.g., > my daughter began stringing 2-3 words together in preschool, yet > didn't jump until she was 7!). I think the important points to keep > in mind are that:> (1) as mentioned above, kids excel in different areas. This is > probably partially attributable to where there parents' put the > emphasis (or which therapist was strongest) -- but

also because it is > very difficult to advance in multiple arenas simultaneously. A > therapist once told me that kids with disabilities typically "rotate" > between disciplines (i.e., they'll make big gains in PT, then OT, then > SLP, etc.). > (2) kids with special needs often progress in "plateaus" rather than > smoothly. A typical child generally makes steady gains -- vs. a child > with DS who might not seem to be "getting" a topic, then suddenly s/he > will grasp it completely. For instance, my daughter couldn't use any > pronouns (I, we, she, etc.) -- then suddenly started using ALL of her > pronouns! And -- speaking for my daughter anyway -- once she learns > something, she never loses it!> > In response to your question, it's not at all unusual for a child with > DS your son's age to be speaking only in single words (some have no > language at all at that

age).> > Hope that helps a little...> > Sheryl>> */Miriam Kang <miriamekang>/* wrote:>> Hi Everyone,> QUESTION: At what age did your child with DS start putting words> together (2+ words) and form sentences? example: when (3> yrs.) sees a red ball he knows it is red and knows it is ball and> will label it one of those but can't say red ball. He will say red> and ball as clear as day but when I tell him to say red ball he> says eh ba or ah ooh, totally non related to what we are saying.> He learns more and more words every day but just doesn't seem to> correctly use them and his speech at pre-k is useless.> > Thanks,> Miriam>> */ Granata <juliesurecode>/* wrote:>> Hi

Everyone,>> It's been a crazy summer so far.>> I started the kids in Sunday School about a month ago and> support Haley> & Nikki in their class with attending, being appropriate (ie> standing in> line, etc.) and developing peer relationships. It's kinda painful> sometimes to see so many things that typical kids can do and> here the> girls are, scribbling rather than coloring, groaning rather> than using> words, getting into things when other children don't, being> disruptive> at times, and running all over music/signing class when all> the other> kids are attending. When they act out, the other kids look at> them> strange. It's tough. Afterwards, when I collect all 3 of them> to go> through the fellowship hall and out to parking, the kids are> darting in> 3 different directions away from me. People just gawk

and> don't know> what to do. They've never seen the likes of these kids -> trying to> figure out if they are triplets or twins; do they really both> have Down> Syndrome, etc.? I have to beg for help to keep them from> getting hit in> the parking lot. It seems like with each Sunday, the girls are> getting> better. And it seems like folks are starting to help me keep> them from> running out a back door when I'm guarding a front door in> music class,> etc. I'm hopeful that the church will continue to embrace the> children> and learn how to help them, thus fading me out of the> classroom so I can> maybe volunteer with infants in the nursery, etc. It would be> nice to> take care of other people's babies for an hour each week.>> We had mediation on July 20 and it had a favorable outcome. I> sent a> formal

complaint to the Dept. of Education for each daughter> which was> very "high level" (not whining which is easy for me to do) and it> detailed all violations I could prove from school> documentation and tape> recordings. This is what I presented at the mediation and> ultimately,> we got everything we asked for and more... I was very> organized at the> table with a 3" book of all documents for each daughter (all> tabbed for> easy reference) and a 3rd 3" book of all school emails and> research> tabbed by each therapy, including education. My 4th notebook> was just> an 1" thick with priority information, ie, the complaint, a> mediation> solutions sheet I put together, the kindergarten drafts I> typed on 2> pages and then added all parent input to this (with> justifications),> etc. I could tell that the special education

director was not> pleased> with the complaint and wanted to remedy it as soon as> possible. The> school continually refusing to assist with critical life> skills, ie,> toileting, feeding, etc., has got to be embarrassing. She> knows what> the law is. The big problem with their school was lack of staff> training on the law and lack of appropriate staff support. We> now have> a new IEP team and a new school, thank goodness, all of the> PLOPs and> goals are being rewritten with parent input considered prior> to the IEP> meeting which needs to happen by August 17 so there's much to> be done> prior to this date.>> The kids are wearing me out at home. They are playing "dodge> ball" with> me - one will do something and as I handle that, the next one> does> something so I have to handle that at the same time, then

the> third will> do something to try to drive me insane. This goes on> constantly ALL> DAY... When I get on the phone to book an appt, etc, that's> when all> bets are off - will climb on an antique dresser in the> livingroom 5> times in a row, manage to get around a barricaded screen and> into the> fireplace, do anything he knows he can't get away with when> I'm not on> the phone...>> Have I written enough! There's so much I haven't written - girls> pulling all their clothes off last night in bed and peeing all> over the> place so I did "midnight baths"; a ton of appts & referrals to> figure> out; medical stuff going on; Man! I'm so worn out... I cry every> week... This is so hard... Those folks that say God won't give> you> anymore than you can handle... yeah, yeah, yeah... They're> usually the>

ones with the "cush-life." Ha-Ha! Even my own family - ugh! My> Mom> just had a family reunion at her house that's 1 1/2 hours away> but we> couldn't go. Mom doesn't put stuff away so the kids will be> more safe,> plus she has a pool that's not fenced in. If my family "got> it" and> assigned themselves to our kids at Mom's house to keep them from> drowning or "redecorating" her home, it might be doable. My> family's> just very self-absorbed... So we always miss out on family> get-togethers, and even taking them to the park, etc. It's so> unfair to> the kids... Whatever... I'm complaining - sorry...>> Thank God for you guys! Did I mention it was you guys that> helped give> me the backbone to advocate for my kids at the mediation and> prepare> customized K goals for the girls? You all rock! I'm very>

grateful...>> Love,> Granata> Mom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3> yr son>> Multiples-DS > <mailto:Multiples-DS%40yahoogroups.com> wrote:> > Reminder from: *Multiples-DS Yahoo! Group> > <http://groups.yahoo.com/group/Multiples-DS/cal> <http://groups.yahoo.com/group/Multiples-DS/cal>>*> >> > Title: Check-in Day!> >> > Date: Monday August 6, 2007> > Time: All Day> > Repeats: This event repeats every other month on the first> Monday.> > Notes: If you haven't posted in over 8 weeks - you are now> at risk> > for

being removed from Multiples-DS! Please check-in with> the group by> > posting to the group -- even a small update!> >> > Lurking is NO longer allowed on this group!!> >> > Thanks!> >> > Get reminders on your mobile, Yahoo! Messenger, and email.> > Edit reminder options> > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75> <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> >> > Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> <http://www.yahoo.com/>> All Rights> > Reserved | Terms of Service> <http://docs.yahoo.com/info/terms/> <http://docs.yahoo.com/info/terms/>> |> > Privacy Policy <http://privacy.yahoo.com/privacy/us> <http://privacy.yahoo.com/privacy/us>>> >> >>>> ----------------------------------------------------------> Park yourself in front of a world of choices in alternative vehicles.> Visit the Yahoo! Auto Green Center.> <http://us.rd.yahoo.com/evt=48246/*http://autos.yahoo.com/green_center/;_ylc=X3oDMTE5cDF2bXZzBF9TAzk3MTA3MDc2BHNlYwNtYWlsdGFncwRzbGsDZ3JlZW4tY2VudGVy>>>>>>> Sheryl Knapp> Literacy Advocates> www.LiteracyAdvocates.com <http://www.LiteracyAdvocates.com>> > Cyndy Madeline (10), Kayley & Adrienne ds (2 1/2)

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

Hi Miriam,

The Virginia Dept of Education complaint form for Haley & Nikki is

attached. There are two identical ones - one for each daughter. At the

mediation, I focused on this complaint and what solutions I expected for

compensation. Where there can no compensation and the damage is

irreversible, I noted that. The other overall objective was to make it

clear that it was not just about these little girls but all the ones

behind them who's parents didn't have the time to advocate for their

kids or didn't understand the law. The girls are irrevocably damaged

from the last two years with this last IEP team as they start

kindergarten. The girls should be much further and would be further if

the school followed the law. They have no right to refuse to book an

IEP meeting after parent request for months & months. The atmosphere of

our last IEP team was not in the spirit of the law with all of the

power-tripping, attitudes, etc. The girls' notebooks had every

evaluation, prior written notice, parent letter, progress reports, IEPs,

doctor's reports, etc. in chronological order (see slaw.com). I

was able to answer all questions and quickly refer to all proof needed

from school documentation.

School support for feeding, potty training, self-help skills, etc. are

part of the law. It's clearly written in our local ESY documentation as

critical life skills. It goes right back to the basic definition of

Idea 2004 - " independent living. " (The complete definition is

downstairs in my wrightslaw book.)

Re speech - Get a diagnosis from a medical doctor or the school won't

have to acknowledge it as a diagnosis. You can first get the diagnosis

from a private speech evaluator. These are free if you disagree with

the school's speech evaluation. Just request in letter form an

" independent speech evaluation at public expense " based on your

disagreement to the school's speech evaluation. Then, choose a good

private evaluator with appropriate credentials. Our local geneticist

had already put their " severe oral-verbal dyspraxia " diagnosis

(cognitive-expressive language gap) in letter form I think when they

were about 1 yr old! (This is a motor planning, sequencing issue - you

may see if when they try to learn to blow bubbles, blow their nose,

learn the steps to potty-training - it " rears its head " in many domains...)

We didn't know anything during early intervention. We even had a school

OT when the girls started school at 2 yrs get very emotional and tell us

she was furious with the lack of support that the early intervention

program didn't provide. We had no idea it wasn't good. Our only

concern was the girls being treated like a group and if there was just

one kid here with special needs, they would have gotten the same hours

and 1:1 direct service.

Have you checked out Rosenfeld 's speech oral-motor site?

I think it's talktools.net. She has some great articles in there.

You asked how much speech they get -

Last school year - they got 1 hour per week, 1:1 direct, 15 minute

spurts (w/out travel time). (That wasn't enough but better than

nothing!) Also music therapy tied to all speech goals of 1/2 hour per

week, 1:1 direct. (It would have been an hour if I had agreed to both

girls at the same time.) Also, only 120 mins per month of feeding

consult - what a waste. We supplemented with private therapy of

speech-oral motor-feeding of 2 hours per week, 1:1 direct.

Over the summer - we have 1/2 hour speech 1:1 direct per week, 1 hour

feeding 1:1 direct per week, and supplement with 2 hours speech-oral

motor-feeding of 2 hours per week, 1:1 direct. (Plus 2 hrs 1:1 direct

education per week and 1/2 hr week 1:1 direct o.t. which both definitely

help speech) All of this is in the home setting. (The other is the

one month summer school.)

For kindergarten drafts - we will get 1 hour feeding per week, 1:1

direct, at least 1/2 hour music 1:1 direct, and we are advocating for

FIVE hours per week of speech - of course we won't get it but we are

aiming high and have ALOT of speech, articulation, social goals in

Kindergarten draft IEPs. Since we expect them to be included in a

typical K class, someone that has a speech understanding needs to

support and document pragmatics, speech scripting, interpretation of

girls speech to other children, etc... Not our fault the school refused

to offer an inclusive environment that last three years of preschool!

This needs to be appropriately facilitated so the girls aren't further

isolated from their nondisabled peers. We are expecting they be allowed

a 6-hour day - this is also aiming high so that the services can be

justified after AM kindergarten.

I think I wrote alot. Sorry! Just trying to answer your questions -

this is how I keep learning, too. Hope this makes sense. I don't have

time to proof - so I will just send... :-)

Sincerely,

Granata

Mom to Haley & Nikki, almost 5 yr twin girls, both w/DS, and , 3 1/2

yr son

Miriam Kang wrote:

> ,

> You sound like an amazing mom and advocate for you kids, they are so

> lucky to have you. My son is 3 and 3 months so we have a little ways

> to go until kindergarten but I was wondering what all your issues

> are/were and what exactly you included in your meeting info? I have

> such issues with ' speech or should I say lack of speech (we

> have had 3 IEPs since he turned 3 in March) and the feeding, potty

> training and NO self skills like dressing. I am hoping to learn from

> others before too much time goes by because I didn't with early

> intervention and he suffered from lack of that.

>

> Thanks so much,

> Miriam

>

> */ Granata /* wrote:

>

> Hi Everyone,

>

> It's been a crazy summer so far.

>

> I started the kids in Sunday School about a month ago and support

> Haley

> & Nikki in their class with attending, being appropriate (ie

> standing in

> line, etc.) and developing peer relationships. It's kinda painful

> sometimes to see so many things that typical kids can do and here the

> girls are, scribbling rather than coloring, groaning rather than

> using

> words, getting into things when other children don't, being

> disruptive

> at times, and running all over music/signing class when all the other

> kids are attending. When they act out, the other kids look at them

> strange. It's tough. Afterwards, when I collect all 3 of them to go

> through the fellowship hall and out to parking, the kids are

> darting in

> 3 different directions away from me. People just gawk and don't know

> what to do. They've never seen the likes of these kids - trying to

> figure out if they are triplets or twins; do they really both have

> Down

> Syndrome, etc.? I have to beg for help to keep them from getting

> hit in

> the parking lot. It seems like with each Sunday, the girls are

> getting

> better. And it seems like folks are starting to help me keep them

> from

> running out a back door when I'm guarding a front door in music

> class,

> etc. I'm hopeful that the church will continue to embrace the

> children

> and learn how to help them, thus fading me out of the classroom so

> I can

> maybe volunteer with infants in the nursery, etc. It would be nice to

> take care of other people's babies for an hour each week.

>

> We had mediation on July 20 and it had a favorable outcome. I sent a

> formal complaint to the Dept. of Education for each daughter which

> was

> very " high level " (not whining which is easy for me to do) and it

> detailed all violations I could prove from school documentation

> and tape

> recordings. This is what I presented at the mediation and ultimately,

> we got everything we asked for and more... I was very organized at

> the

> table with a 3 " book of all documents for each daughter (all

> tabbed for

> easy reference) and a 3rd 3 " book of all school emails and research

> tabbed by each therapy, including education. My 4th notebook was just

> an 1 " thick with priority information, ie, the complaint, a mediation

> solutions sheet I put together, the kindergarten drafts I typed on 2

> pages and then added all parent input to this (with justifications),

> etc. I could tell that the special education director was not pleased

> with the complaint and wanted to remedy it as soon as possible. The

> school continually refusing to assist with critical life skills, ie,

> toileting, feeding, etc., has got to be embarrassing. She knows what

> the law is. The big problem with their school was lack of staff

> training on the law and lack of appropriate staff support. We now

> have

> a new IEP team and a new school, thank goodness, all of the PLOPs and

> goals are being rewritten with parent input considered prior to

> the IEP

> meeting which needs to happen by August 17 so there's much to be done

> prior to this date.

>

> The kids are wearing me out at home. They are playing " dodge ball "

> with

> me - one will do something and as I handle that, the next one does

> something so I have to handle that at the same time, then the

> third will

> do something to try to drive me insane. This goes on constantly ALL

> DAY... When I get on the phone to book an appt, etc, that's when all

> bets are off - will climb on an antique dresser in the

> livingroom 5

> times in a row, manage to get around a barricaded screen and into the

> fireplace, do anything he knows he can't get away with when I'm

> not on

> the phone...

>

> Have I written enough! There's so much I haven't written - girls

> pulling all their clothes off last night in bed and peeing all

> over the

> place so I did " midnight baths " ; a ton of appts & referrals to figure

> out; medical stuff going on; Man! I'm so worn out... I cry every

> week... This is so hard... Those folks that say God won't give you

> anymore than you can handle... yeah, yeah, yeah... They're usually

> the

> ones with the " cush-life. " Ha-Ha! Even my own family - ugh! My Mom

> just had a family reunion at her house that's 1 1/2 hours away but we

> couldn't go. Mom doesn't put stuff away so the kids will be more

> safe,

> plus she has a pool that's not fenced in. If my family " got it " and

> assigned themselves to our kids at Mom's house to keep them from

> drowning or " redecorating " her home, it might be doable. My family's

> just very self-absorbed... So we always miss out on family

> get-togethers, and even taking them to the park, etc. It's so

> unfair to

> the kids... Whatever... I'm complaining - sorry...

>

> Thank God for you guys! Did I mention it was you guys that helped

> give

> me the backbone to advocate for my kids at the mediation and prepare

> customized K goals for the girls? You all rock! I'm very grateful...

>

> Love,

> Granata

> Mom to Haley & Nikki, 4 yr twin girls, both w/DS, and , 3 yr son

>

> Multiples-DS

> <mailto:Multiples-DS%40yahoogroups.com> wrote:

> > Reminder from: *Multiples-DS Yahoo! Group

> > <http://groups.yahoo.com/group/Multiples-DS/cal

> <http://groups.yahoo.com/group/Multiples-DS/cal>>*

> >

> > Title: Check-in Day!

> >

> > Date: Monday August 6, 2007

> > Time: All Day

> > Repeats: This event repeats every other month on the first Monday.

> > Notes: If you haven't posted in over 8 weeks - you are now at risk

> > for being removed from Multiples-DS! Please check-in with the

> group by

> > posting to the group -- even a small update!

> >

> > Lurking is NO longer allowed on this group!!

> >

> > Thanks!

> >

> > Get reminders on your mobile, Yahoo! Messenger, and email.

> > Edit reminder options

> > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75

> <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>

> >

> > Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com

> <http://www.yahoo.com/>> All Rights

> > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/

> <http://docs.yahoo.com/info/terms/>> |

> > Privacy Policy <http://privacy.yahoo.com/privacy/us

> <http://privacy.yahoo.com/privacy/us>>

> >

> >

>

>

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