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

August 9, 2007

WOW , THANK YOU! I can't believe how much you put down, you are amazing. It sounds like we have been in similar situations beginning with early intervention and lack of! Have you thought about training to be an advocate, I think this is your calling. I hope to learn more from you in the months to come. Miriam Granata wrote: 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, GranataMom to Haley & Nikki, almost 5 yr twin girls, both w/DS, and , 3 1/2 yr sonMiriam 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 <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>>> >> >>>> ----------------------------------------------------------> Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user > panel > <http://us.rd.yahoo.com/evt=48516/*http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7%20> > and lay it on us.>

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August 9, 2007

Hi Beth,

Thanks for your kind words... I like that phrase. We have a few things

in common - Our twins are 4 yrs; we're Catholic, I'm 43, and wear a 7

1/2 size shoe, too! My husband's Mom attends mass every day and is

full-blooded Italian. I found a local nondeminational Christian church

here that strictly studies the bible. I'm baptized catholic, however,

don't understand all the political stuff and never seem to be able to

walk out of Catholic church " fed " . I walk out confused and guilty bec.

I'm not even sure if I'm allowed to receive the " bread & wine " bec. I

haven't confessed. I stand out like a sore thumb when most folks walk

up to the front and here I still am in the pew! I do really love this

Christian church - I'm learning so much about the history in the bible

and how it ties to today, including things like how to discipline the

kids, etc. The kids " should " be in Catholic school but how can I lead

them when I'm so lost in catholicism? I know my mother in law really

wants them there and I do want to honor her wishes... But my husband

won't even go to church - he's one of those that attended private

Catholic school all the way through college, was an altar boy, and is

now " done " with " anyone " controlling him... That's another whole topic,

I guess...

I appreciate you saying that you don't attend everything on the agenda.

My family tries to suggest that I'm keeping the kids from them - yeah!

Come on over any time you want and help - the welcome mat is on the

front porch - 24 hrs/7 day a week. Thanks for the info on getting

others to become part of helping the girls thru church. That's a great

idea. I've been keeping my eyes peeled for someone.

Gotta run - time for therapy...

Thanks,

Granata

dean schafer wrote:

>

> ,

> 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 <julie@... <mailto:julie%40surecode.com>>

> 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>>

> > >

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August 9, 2007

Hi Miriam -

Thank you for the compliment - but I still consider myself very

" green. " My drive to develop an understanding of the law, where the

girls would be if they were typically-developing, where they are now,

what the difference is, knowing how to advocate their present needs as

well as protect the school relationships of those folks that take care

of the girls is very strong because it's obviously a " double-whammy " in

our family. What I continue to 'not understand' and 'not do'

(medically, nutritionally, socially, & educationally) will continue to

negatively affect the outcome at the other side (when they are adults.)

I sat around long enough with my ignorance and allowed others to " serve "

them when they really didn't. I " trusted " the system - which is just

what they want - you to just leave them alone. I'm still mad that the

girls were disserviced in early intervention and during these pre-school

years, and this " madness " , plus the spiritual, legal, and educational

advice from this listserve and others, as well as many great

professionals out there doing the right thing - all of this inspires me

to figure out how I can help the girls and anyone along the way that

asks as I learn... I don't think I'm qualified to advocate

professionally. It's a very personal thing and I just follow my gut and

go to workshops when I can and share information from whomever asks it

.... You're the best advocate for your kids. No one can do any better -

you are the leading expert! (All of this is right from slaw.com)

I just review it so it's cellular; so it can roll off my tongue in a

taped IEP meeting in a non-offensive way when I need it to... I'm

learning what Pete says about timing and strategy. He's is

(w)right! :-) Go see him if you can - he's awesome!

BTW, did you guys know that PAT WINDERS IS MOVING TO DENVER? You lucky

folks in Denver!!! I will find out where when I see her in a few weeks...

Regards,

Miriam Kang wrote:

> WOW , THANK YOU! I can't believe how much you put down, you are

> amazing. It sounds like we have been in similar situations beginning

> with early intervention and lack of! Have you thought about training

> to be an advocate, I think this is your calling. I hope to learn more

> from you in the months to come.

>

> Miriam

>

> */ Granata /* wrote:

>

> 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 <julie@...

> <mailto:julie%40surecode.com>>/* 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>

> > <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>

> > <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>

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

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

> > >

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

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

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

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> > >

> >

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

> > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s

> user

> > panel

> >

>

<http://us.rd.yahoo.com/evt=48516/*http://surveylink.yahoo.com/gmrs/yahoo_panel_\

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>

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> > and lay it on us.

> >

>

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

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> <http://us.rd.yahoo.com/evt=48253/*http://mobile.yahoo.com/go?refer=1GNXIC>

> mail, news, photos more.

>

August 9, 2007

Here is a link to some updated pics of the twins!

http://www.kodakgallery.com/BrowsePhotos.jsp?

& collid=14973031705.586461404505.1186687406010 & page=1

>

> 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

>

_____________________________________________________________________

___

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

August 9, 2007

HI Sheryl - Thank you for thoughts. Your advice has always meant alot.

Regards,

Sheryl Knapp wrote:

> ,

>

> 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,

> 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>>

> >

> <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>>

> >

>

> Sheryl Knapp

> Literacy Advocates

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

>

August 9, 2007

Hi, -

I am so glad you responded it sounds like we have

ALOT more in common then you think and my how GOD

works in people's lives!!

I want to respond more in detail but I just got in

from cleaning a house (NOT MINE EITHER!!). I need to

tend to the boys for awhile- KNOW YOU UNDERSTAND THAT

ONE-HA! HA!

I can't wait Wait to detail you a little more on my

" Struggle " through Catholocism!!

Sincerely-

Beth

--- Granata wrote:

> Hi Beth,

>

> Thanks for your kind words... I like that phrase.

> We have a few things

> in common - Our twins are 4 yrs; we're Catholic, I'm

> 43, and wear a 7

> 1/2 size shoe, too! My husband's Mom attends mass

> every day and is

> full-blooded Italian. I found a local

> nondeminational Christian church

> here that strictly studies the bible. I'm baptized

> catholic, however,

> don't understand all the political stuff and never

> seem to be able to

> walk out of Catholic church " fed " . I walk out

> confused and guilty bec.

> I'm not even sure if I'm allowed to receive the

> " bread & wine " bec. I

> haven't confessed. I stand out like a sore thumb

> when most folks walk

> up to the front and here I still am in the pew! I

> do really love this

> Christian church - I'm learning so much about the

> history in the bible

> and how it ties to today, including things like how

> to discipline the

> kids, etc. The kids " should " be in Catholic school

> but how can I lead

> them when I'm so lost in catholicism? I know my

> mother in law really

> wants them there and I do want to honor her

> wishes... But my husband

> won't even go to church - he's one of those that

> attended private

> Catholic school all the way through college, was an

> altar boy, and is

> now " done " with " anyone " controlling him... That's

> another whole topic,

> I guess...

>

> I appreciate you saying that you don't attend

> everything on the agenda.

> My family tries to suggest that I'm keeping the kids

> from them - yeah!

> Come on over any time you want and help - the

> welcome mat is on the

> front porch - 24 hrs/7 day a week. Thanks for the

> info on getting

> others to become part of helping the girls thru

> church. That's a great

> idea. I've been keeping my eyes peeled for someone.

>

> Gotta run - time for therapy...

>

> Thanks,

> Granata

>

> dean schafer wrote:

> >

> > ,

> > 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 <julie@...

> <mailto:julie%40surecode.com>>

> > 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

>

=== message truncated ===

________________________________________________________________________________\

____

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August 9, 2007

I might be doing something wrong here but all I pulled up was a home page for Kodak gallery and not your personal one. Miriam Shipley wrote: Here is a link to some updated pics of the twins!http://www.kodakgallery.com/BrowsePhotos.jsp? & collid=14973031705.586461404505.1186687406010 & page=1--- In Multiples-DS , TylerLrn@... wrote:>> > 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> > > _____________________________________________________________> AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.>

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

August 9, 2007

I couldn't get the link to work?

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

Here is a link to some updated pics of the twins!http://www.kodakgallery.com/BrowsePhotos.jsp? & collid=14973031705.586461404505.1186687406010 & page=1--- In Multiples-DS , TylerLrn@... wrote:>> > 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> > > _____________________________________________________________> AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.>

August 9, 2007

You guys all rock. Thanks for all of your inspiration.

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

Hi, -I am so glad you responded it sounds like we haveALOT more in common then you think and my how GODworks in people's lives!!I want to respond more in detail but I just got infrom cleaning a house (NOT MINE EITHER!!). I need totend to the boys for awhile- KNOW YOU UNDERSTAND THATONE-HA! HA!I can't wait Wait to detail you a little more on my"Struggle" through Catholocism!!Sincerely-Beth--- Granata <juliesurecode> wrote:> Hi Beth,> > Thanks for your kind words... I like that phrase. > We have a few things > in common - Our twins are 4 yrs; we're Catholic, I'm> 43, and wear a 7 > 1/2 size shoe, too! My husband's Mom attends mass> every day and is > full-blooded Italian. I found a local> nondeminational Christian church > here that strictly studies the bible. I'm baptized> catholic, however, > don't understand all the political stuff and never> seem to be able to > walk out of Catholic church "fed". I walk out> confused and guilty bec. > I'm not even sure if I'm allowed to receive the> "bread & wine" bec. I > haven't confessed. I stand out like a sore thumb> when most folks walk > up to the front and here I still am in the pew! I> do really love this > Christian church - I'm learning so much about the> history in the bible > and how it ties to today, including things like how> to discipline the > kids, etc. The kids "should" be in Catholic school> but how can I lead > them when I'm so lost in catholicism? I know my> mother in law really > wants them there and I do want to honor her> wishes... But my husband > won't even go to church - he's one of those that> attended private > Catholic school all the way through college, was an> altar boy, and is > now "done" with "anyone" controlling him... That's> another whole topic, > I guess... > > I appreciate you saying that you don't attend> everything on the agenda. > My family tries to suggest that I'm keeping the kids> from them - yeah! > Come on over any time you want and help - the> welcome mat is on the > front porch - 24 hrs/7 day a week. Thanks for the> info on getting > others to become part of helping the girls thru> church. That's a great > idea. I've been keeping my eyes peeled for someone.> > Gotta run - time for therapy...> > Thanks,> Granata> > dean schafer wrote:> >> > ,> > 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 <juliesurecode> <mailto:julie%40surecode.com>> > > 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> === message truncated ===__________________________________________________________Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out.http://answers.yahoo.com/dir/?link=list & sid=396545469

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August 9, 2007

,

In all honesty I feel the EXACT same way about

catholicism!! I happened upon a radio station led by

Jimmy Swaggart called " Son Life " (are you rolling your

eyes??!!). Everything he was saying made sense to me

in biblical terms!

I am very torn though because my husband is a " GOOD "

catholic and he doesn't see what is wrong with it. So

it is very hard for me to tear myself away as I am

afraid to start a FAMILY FUED!!! We do have a good

priest and I do walk out of church satisfied but still

feel guilty because I do not believe in confessing to

a priest and I do not believe the bread is TRULY the

body of Christ nor that the wine is TRULY the blood of

Christ but that it is only a representaton! I do not

believe we need that reminder daily or weekly for if

we believe in Christ we do not need all that! I am not

a rosary prayer so it is very hard on me to explain

to my children! I don't believe that the Pope is

basically right under Jesus. I believe he is a man no

better then you or I. Trust me I could go on and on

but I don't want to offend anyone as we are all human

just wanting to believe in Christ! I know I need His

saving grace everyday and He has saved me! That is all

another story that I would love to share with you! I

will if you want to hear it! That is where I feel I

haven't shared enough it is awesome and I am very

blessed to have experienced it because not everyone

gets to! We can all rejoice in the fact there is a

life after this!!! A better life a more peaceful life

that can NOT be experienced here on earth! It is just

so hard to see it in THIS world! I read a really good

book called " 90 Minutes in Heaven " . I highly recommend

it! I know we don't all have time to read but this is

a must read- in my opinion!!!

I have NO doubt in my mind that the right person is

going to come along to help you at church because you

are right where the Lord wants you to be! It has to be

really tough to go and your husband doesn't! Give it

time! He will see what it is doing for you and will

want some, too!

Thanks again for responding and be at PEACE with

yourself! I am more then willing to share my saving

experience if you would like and it is the HONEST TO

GOD TRUTH on how HE saved me!!

Beth

Granata wrote:

> Hi Beth,

>

> Thanks for your kind words... I like that phrase.

> We have a few things

> in common - Our twins are 4 yrs; we're Catholic, I'm

> 43, and wear a 7

> 1/2 size shoe, too! My husband's Mom attends mass

> every day and is

> full-blooded Italian. I found a local

> nondeminational Christian church

> here that strictly studies the bible. I'm baptized

> catholic, however,

> don't understand all the political stuff and never

> seem to be able to

> walk out of Catholic church " fed " . I walk out

> confused and guilty bec.

> I'm not even sure if I'm allowed to receive the

> " bread & wine " bec. I

> haven't confessed. I stand out like a sore thumb

> when most folks walk

> up to the front and here I still am in the pew! I

> do really love this

> Christian church - I'm learning so much about the

> history in the bible

> and how it ties to today, including things like how

> to discipline the

> kids, etc. The kids " should " be in Catholic school

> but how can I lead

> them when I'm so lost in catholicism? I know my

> mother in law really

> wants them there and I do want to honor her

> wishes... But my husband

> won't even go to church - he's one of those that

> attended private

> Catholic school all the way through college, was an

> altar boy, and is

> now " done " with " anyone " controlling him... That's

> another whole topic,

> I guess...

>

> I appreciate you saying that you don't attend

> everything on the agenda.

> My family tries to suggest that I'm keeping the kids

> from them - yeah!

> Come on over any time you want and help - the

> welcome mat is on the

> front porch - 24 hrs/7 day a week. Thanks for the

> info on getting

> others to become part of helping the girls thru

> church. That's a great

> idea. I've been keeping my eyes peeled for someone.

>

> Gotta run - time for therapy...

>

> Thanks,

> Granata

>

> dean schafer wrote:

> >

> > ,

> > 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 <julie@...

> <mailto:julie%40surecode.com>>

> > 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

>

=== message truncated ===

________________________________________________________________________________\

____

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August 10, 2007

Miriam, Libby Kumin talked a lot about that and that it doesn't really matter if you "label" it or "diagnose" it. You should probably be working with the methods that work for kids with apraxia because if he does have it it will help, if not if won't hurt. The methods she described for therapy sounded a lot like the cued speech I have learned, and I'm not an expert, but I think gives more visual cues to get the child to get the right sounds out in the right place. As far as speech services go, there is much more to speech than the language and talking, as I'm sure you know. Libby stated that there are many things you can do for kids before they are saying words that will help them, one being oral motor exercises, blowing bubbles, whistles, etc. She did stress, though that a child could have speech therapy 5 times a week and without follow through at home, it would be worthless. My Adrienne will be 3 in

November and I had to reallly push for Speech Therapy too. I actually went outside the early intervention program and take her to therapy twice a week now. I'm lucky that my insurance covers it, though. Hope this helps. Miriam Kang wrote: 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 <juliesurecode> 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>> > Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center. Cyndy

Madeline (10), Kayley & Adrienne ds (2 1/2)

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August 10, 2007

Hi Cyndy - This is good stuff. I saw Libby Kumin a few months back with

the DS of Northern VA group. I liked what she said about speech therapy

not really being learned in a one-hour session but must be carried over

in life. It's key that therapists teach the parents the methodologies

so they can be generalized at home. She's great. Thanks for sharing

this... -

Cyndy Bayer wrote:

> Miriam,

>

> Libby Kumin talked a lot about that and that it doesn't really matter

> if you " label " it or " diagnose " it. You should probably be working

> with the methods that work for kids with apraxia because if he does

> have it it will help, if not if won't hurt. The methods she described

> for therapy sounded a lot like the cued speech I have learned, and I'm

> not an expert, but I think gives more visual cues to get the child to

> get the right sounds out in the right place. As far as speech

> services go, there is much more to speech than the language and

> talking, as I'm sure you know. Libby stated that there are many

> things you can do for kids before they are saying words that will help

> them, one being oral motor exercises, blowing bubbles, whistles, etc.

> She did stress, though that a child could have speech therapy 5 times

> a week and without follow through at home, it would be worthless. My

> Adrienne will be 3 in November and I had to reallly push for Speech

> Therapy too. I actually went outside the early intervention program

> and take her to therapy twice a week now. I'm lucky that my insurance

> covers it, though. Hope this helps.

>

> */Miriam Kang /* wrote:

>

> 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. " :-) 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 <miriamekang@...

> <mailto:miriamekang%40yahoo.com>>/* 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 <julie@...

> <mailto:julie%40surecode.com>>/* 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>

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

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

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> <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!

> > >

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> > >

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

> > >

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> >

> > Sheryl Knapp

> > Literacy Advocates

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

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

> >

>

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

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

> Visit the Yahoo! Auto Green Center.

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>

> */Cyndy /*

> */Madeline (10), Kayley & Adrienne ds (2 1/2)/*

>

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August 10, 2007

Cyndy, Thank you so much! Everything helps. MiriamCyndy Bayer wrote: Miriam, Libby Kumin talked a lot about that and that it doesn't really matter if you "label" it or "diagnose" it. You should probably be working with the methods that work for kids with apraxia because if he does have it it will help, if not if won't hurt. The methods she described for therapy sounded a lot like the cued speech I have

learned, and I'm not an expert, but I think gives more visual cues to get the child to get the right sounds out in the right place. As far as speech services go, there is much more to speech than the language and talking, as I'm sure you know. Libby stated that there are many things you can do for kids before they are saying words that will help them, one being oral motor exercises, blowing bubbles, whistles, etc. She did stress, though that a child could have speech therapy 5 times a week and without follow through at home, it would be worthless. My Adrienne will be 3 in November and I had to reallly push for Speech Therapy too. I actually went outside the early intervention program and take her to therapy twice a week now. I'm lucky that my insurance covers it, though. Hope this helps. Miriam Kang <miriamekang> wrote: 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 <juliesurecode> 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>> > Park yourself in front of a world of choices in alternative

vehicles.Visit the Yahoo! Auto Green Center. Cyndy Madeline (10), Kayley & Adrienne ds (2 1/2) Shape Yahoo! in your own image. Join our Network Research Panel today!

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August 12, 2007

Hi to everyone. We've had a great summer. Our main activity was swimming. We probably made it to the pool 5 times a week, most weeks. I was very fortunate that our babysitter, a new high school grad, was very available and would go with us most of the time. The boy's early interventionist would go swimming with us once a week and then we'd go as a family once or twice a week. The boys made huge gains this summer in swimming. They seemed to have forgotten how to swim at the beginning of the summer, but by today, they were jumping off the side and swimming to a platform two lanes away. They are so happy when they are swimming that I've decided to get a pool membership at a pool where they can swim year round. I've also looking into finding them a swim instructor to do regular lessons. This is especially important since our sitter leaves for college Thursday and it will be very difficult for me to find someone to assist me with the boys. We had a little water scare a week ago, but it turned out o.k. went headfirst into the 9 foot, he had never done this before. Before we could get to him he surfaced, turned toward the side and got out. He looked a little tired, but wasn't upset in the least. Felt good to know he could get out himself, but now he really scares me. He had never been quite that brave before.

They also gave up their afternoon naps recently. I actually am glad, because they fall asleep faster in the evenings and that will make it easier to get up in time for school. School starts just a week from Tuesday. Each boy will be in a separate PIC class (Preschool Intervention Class). I think this will be a good idea since last year they were sharply compared to each other, which wasn't good for either of them. I'm hoping that separating them will help everyone treat them as the individuals they are. ESY was very disappointing. Each boy qualified for 6 hours of ESY over the Summer, which is a joke in itself. The IEP recommended preferably 12 sessions at 30 min each over the Summer if available. Well the school scheduled the 6 hours within an 11 day period in July. I tried to get it scheduled in 30 minute sessions and to exclude conflicting times when the boys already had speech, OT or early intervention, the teacher was in agreement, but when she went higher to get the approval, she was told no, she was hired to educate my boys during that time and that was it. With persistence I got the o.k. to look at some other times, but then they offered times when the boys were napping. (Any they knew the boys napped.) Long story short, they got very little ESY (3 hours each). They were also owed compensatory speech, but only an hour of 6 happened there either.

I know one thing, I will not let this same thing happen next year, the summer prior to kindergarten!!!

Sunday school is also a challenge. , I feel your pain. I'm working on a plan to move them up to their age appropriate class. I think they would love it, I just need to organize the one to one help. I'm willing to be an assistant, but I still need to find another person, every Sunday. I was in tears over this today, but I know in my heart it will work out. I just need to start working on it.

That's all for now. I love to hear from all of you. You keep me going when nobody else understands.

a

and 4 1/2 year old identical twins with DS

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August 12, 2007

a, I am not sure how your state works but here in California, if your boys didn't get what they were suppose to according to the IEP they they would have to make it up in the school year. If your state is the same way I would make it a point to get them what they were suppose to have. Actually I think it is a federal law and not just a California one? Miriam 3 EDD-boy- 10/19/07mrsimoffshore@... wrote: Hi to everyone. We've had a

great summer. Our main activity was swimming. We probably made it to the pool 5 times a week, most weeks. I was very fortunate that our babysitter, a new high school grad, was very available and would go with us most of the time. The boy's early interventionist would go swimming with us once a week and then we'd go as a family once or twice a week. The boys made huge gains this summer in swimming. They seemed to have forgotten how to swim at the beginning of the summer, but by today, they were jumping off the side and swimming to a platform two lanes away. They are so happy when they are swimming that I've decided to get a pool membership at a pool where they can swim year round. I've also looking into finding them a swim instructor to do regular lessons. This is especially important since our sitter leaves for college Thursday and it will be very difficult for me to find someone to assist me with the boys.

We had a little water scare a week ago, but it turned out o.k. went headfirst into the 9 foot, he had never done this before. Before we could get to him he surfaced, turned toward the side and got out. He looked a little tired, but wasn't upset in the least. Felt good to know he could get out himself, but now he really scares me. He had never been quite that brave before.They also gave up their afternoon naps recently. I actually am glad, because they fall asleep faster in the evenings and that will make it easier to get up in time for school. School starts just a week from Tuesday. Each boy will be in a separate PIC class (Preschool Intervention Class). I think this will be a good idea since last year they were sharply compared to each other, which wasn't good for either of them. I'm hoping that separating them will help everyone treat them as the individuals they are. ESY was very

disappointing. Each boy qualified for 6 hours of ESY over the Summer, which is a joke in itself. The IEP recommended preferably 12 sessions at 30 min each over the Summer if available. Well the school scheduled the 6 hours within an 11 day period in July. I tried to get it scheduled in 30 minute sessions and to exclude conflicting times when the boys already had speech, OT or early intervention, the teacher was in agreement, but when she went higher to get the approval, she was told no, she was hired to educate my boys during that time and that was it. With persistence I got the o.k. to look at some other times, but then they offered times when the boys were napping. (Any they knew the boys napped.) Long story short, they got very little ESY (3 hours each). They were also owed compensatory speech, but only an hour of 6 happened there either.I know one thing, I will not let this same thing happen next year, the summer prior to

kindergarten!!!Sunday school is also a challenge. , I feel your pain. I'm working on a plan to move them up to their age appropriate class. I think they would love it, I just need to organize the one to one help. I'm willing to be an assistant, but I still need to find another person, every Sunday. I was in tears over this today, but I know in my heart it will work out. I just need to start working on it.That's all for now. I love to hear from all of you. You keep me going when nobody else understands.a and 4 1/2 year old identical twins with DS 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 AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

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August 13, 2007

Miriam,

Thank you for the information. I'll check on it. I especially want the speech services they were supposed to get.

a

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

a,

I am not sure how your state works but here in California, if your boys didn't get what they were suppose to according to the IEP they they would have to make it up in the school year. If your state is the same way I would make it a point to get them what they were suppose to have. Actually I think it is a federal law and not just a California one?

Miriam

3

EDD-boy- 10/19/07

mrsimoffshoreaol wrote:

Hi to everyone. We've had a great summer. Our main activity was swimming. We probably made it to the pool 5 times a week, most weeks. I was very fortunate that our babysitter, a new high school grad, was very available and would go with us most of the time. The boy's early interventionist would go swimming with us once a week and then we'd go as a family once or twice a week. The boys made huge gains this summer in swimming. They seemed to have forgotten how to swim at the beginning of the summer, but by today, they were jumping off the side and swimming to a platform two lanes away. They are so happy when they are swimming that I've decided to get a pool membership at a pool where they can swim year round. I've also looking into finding them a swim instructor to do regular lessons. This is especially important since our sitter leaves for college Thursday and it will be very difficult for me to find someone to assist me with the boys. We had a little water scare a week ago, but it turned out o.k. went headfirst into the 9 foot, he had never done this before. Before we could get to him he surfaced, turned toward the side and got out. He looked a little tired, but wasn't upset in the least. Felt good to know he could get out himself, but now he really scares me. He had never been quite that brave before.

They also gave up their afternoon naps recently. I actually am glad, because they fall asleep faster in the evenings and that will make it easier to get up in time for school. School starts just a week from Tuesday. Each boy will be in a separate PIC class (Preschool Intervention Class). I think this will be a good idea since last year they were sharply compared to each other, which wasn't good for either of them. I'm hoping that separating them will help everyone treat them as the individuals they are. ESY was very disappointing. Each boy qualified for 6 hours of ESY over the Summer, which is a joke in itself. The IEP recommended preferably 12 sessions at 30 min each over the Summer if available. Well the school scheduled the 6 hours within an 11 day period in July. I tried to get it scheduled in 30 minute sessions and to exclude conflicting times when the boys already had speech, OT or early intervention, the teacher was in agreement, but when she went higher to get the approval, she was told no, she was hired to educate my boys during that time and that was it. With persistence I got the o.k. to look at some other times, but then they offered times when the boys were napping. (Any they knew the boys napped.) Long story short, they got very little ESY (3 hours each). They were also owed compensatory speech, but only an hour of 6 happened there either.

I know one thing, I will not let this same thing happen next year, the summer prior to kindergarten!!!

Sunday school is also a challenge. , I feel your pain. I'm working on a plan to move them up to their age appropriate class. I think they would love it, I just need to organize the one to one help. I'm willing to be an assistant, but I still need to find another person, every Sunday. I was in tears over this today, but I know in my heart it will work out. I just need to start working on it.

That's all for now. I love to hear from all of you. You keep me going when nobody else understands.

a

and 4 1/2 year old identical twins with DS

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

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