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OK day. No Elie - but he was home for 6 days to give his caregiver/friend

sosme time off.

Went to the movies to see another weird familiy - It's Complicated -

definately a movie for older marrieds or not.

Thanks for caring.

>

>

> For the past three posts, I have forgotten to say " Happy Birthday " .

> Sorry.....brain freeze!!! Hope it was a good day.

>

> Margaret

>

>

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  • 2 weeks later...

Thanks Sara, it's going to be a looooong three months of recovery.

Charlyne

>

> From: Jayne <jacksonsmom99@ yahoo.com <jacksonsmom99% 40yahoo.com> >

> Subject: Re: circle of friends

> To: @yahoogrou ps.com <%40yahoog roups.com>

> Date: Tuesday, January 12, 2010, 10:48 PM

>

>

>

> Thanks Sara, I saw a few things online and will check with the library for

> some books.

>

> Jayne

>

>

> >

> > >

> > >

> > > Anyone have any information to share about Circle Of Friends? Anyone

> use it

> > > with their child at school? is really embracing friends in his

> > > typical class - talking about them all the time and really wanting to

> play

> > > with friends. There are several students in his class who are perfect

> for

> > > piloting a program like COF for him.

> > >

> > > If anyone has any info on COF, I'm open to reading about it.

> > >

> > > Thanks everyone,

> > > Jayne

> > >

> > >

> > >

> >

> >

> >

> > --

> > Sara- different pathways lead to Nirvana.

> >

> >

> >

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The issue????

>

>

> Thanks Sara, it's going to be a looooong three months of recovery.

> Charlyne

>

>

> >

> > From: Jayne <jacksonsmom99@ yahoo.com <jacksonsmom99% 40yahoo.com> >

> > Subject: Re: circle of friends

> > To: @yahoogrou ps.com <%40yahoog roups.com>

> > Date: Tuesday, January 12, 2010, 10:48 PM

> >

> >

> >

> > Thanks Sara, I saw a few things online and will check with the library

> for

> > some books.

> >

> > Jayne

> >

> >

> > >

> > > >

> > > >

> > > > Anyone have any information to share about Circle Of Friends? Anyone

> > use it

> > > > with their child at school? is really embracing friends in

> his

> > > > typical class - talking about them all the time and really wanting to

> > play

> > > > with friends. There are several students in his class who are perfect

> > for

> > > > piloting a program like COF for him.

> > > >

> > > > If anyone has any info on COF, I'm open to reading about it.

> > > >

> > > > Thanks everyone,

> > > > Jayne

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > Sara- different pathways lead to Nirvana.

> > >

> > >

> > >

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>>>>Just a point. MAny people think some one doc is THE ANSWER> I have found

that with our advocacy, we can help a doc reach his 'full potential'. With

PECS and live demostrations - a doc can even learn to be an advocate! :`)<<<<

LOL......good one Sara....and very true actually. I have found so many times

that if I have done enough research and got as many suggestions from all of you

moms as possible I can almost make most doctors think it was " their " idea to

prescribe or diagnose exactly what I wanted. Of course with this gastro

stuff...I want his idea not mine (I don't have any).

But definitely a well placed pecs visual or two might really do the trick.

" Helping a doctor reach his full potential " is too funny. I actually think that

may be what has happened with the old feathered bird Piracetam dude. So much ego

has faded.

Sherry

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See if you can rent a " side bar " so he can get himself out of bed. They

look like shortened bed rails, tuck under the mattress or attach to the

bedframe . Surely he can swing his legs over. If not, he needss PT!!! But

he may have to change which side/end of the bed he sleeps on so that his

more able arm is able to help him. And if his hand was operated on, he can

use his elbow to help!!! Men are a real pain. When my husband had his

last surgery, (on his knee) my son had to come home to deal with him -

there would have been a murder here if not!! And I am a nurse!!!!!

I can see him needing help with the c-pap straps (and that is another

subject - why can't the companies figure out a head harness that doesn't

need those tiny clips to attach????)

>

>

>

> Sara, yes, I know but he has the cpap machine and is still telling me that

> he can't lift himself out of bed without his both arms since his hip

> replacement two yrs ago. I slept about 90 min, long night. I double the pain

> meds this am. I called the dr this am because he would be out of meds this

> weekend with the increased dosage. My oldest son left work early and picked

> up a script to cover this weekend. You would think doubling the dose would

> knock him out, not. Vacation yes, I could jump in the car now.

>

> Charlyne

> >

> > From: Jayne <jacksonsmom99@ yahoo.com <jacksonsmom99% 40yahoo.com> >

> > Subject: Charlyne

>

> > To: @yahoogrou ps.com <%40yahoog roups.com>

> > Date: Thursday, January 14, 2010, 10:29 AM

> >

> >

> >

> > Charlyne,

> > Thinking of you today and hoping things go well for your husband. Three

> > months of recovery! Is everything okay, I must have missed something

> here.

> > Thinking of you and sending good wishes, good juju and lots of prayers

> and

> > hugs,

> > Jayne in Maine

>

> >

> >

> > > > >

> > > > > >

> > > > > >

> > > > > > Anyone have any information to share about Circle Of Friends?

> > Anyone

> > > > use it

> > > > > > with their child at school? is really embracing friends

> in

> > his

> > > > > > typical class - talking about them all the time and really

> wanting

> > to

> > > > play

> > > > > > with friends. There are several students in his class who are

> > perfect

> > > > for

> > > > > > piloting a program like COF for him.

> > > > > >

> > > > > > If anyone has any info on COF, I'm open to reading about it.

> > > > > >

> > > > > > Thanks everyone,

> > > > > > Jayne

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > > --

> > > > > Sara- different pathways lead to Nirvana.

> > > > >

> > > > >

> > > > >

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Sara, yes I have a recliner but he says it is not comfortable with his hip. He

has a back scratcher in his room that he has been using to bang on the wall to

get my attention. I could rap him with it. Our little dog was so annoyed he

jumped on the bed and bit it. I took the back scratcher away last night and

slept. Today he seems to be doing better.

Charlyne

>>

>> From: Jayne <jacksonsmom99@ yahoo.com <jacksonsmom99% 40yahoo.com> >

>> Subject: Charlyne

>> To: @yahoogrou ps.com <%40yahoog roups.com>

>> Date: Thursday, January 14, 2010, 10:29 AM

>>

>>

>>

>> Charlyne,

>> Thinking of you today and hoping things go well for your husband. Three

>> months of recovery! Is everything okay, I must have missed something here.

>> Thinking of you and sending good wishes, good juju and lots of prayers and

>> hugs,

>> Jayne in Maine

>>

>>

>> > > >

>> > > > >

>> > > > >

>> > > > > Anyone have any information to share about Circle Of Friends?

>> Anyone

>> > > use it

>> > > > > with their child at school? is really embracing friends in

>> his

>> > > > > typical class - talking about them all the time and really wanting

>> to

>> > > play

>> > > > > with friends. There are several students in his class who are

>> perfect

>> > > for

>> > > > > piloting a program like COF for him.

>> > > > >

>> > > > > If anyone has any info on COF, I'm open to reading about it.

>> > > > >

>> > > > > Thanks everyone,

>> > > > > Jayne

>> > > > >

>> > > > >

>> > > > >

>> > > >

>> > > >

>> > > >

>> > > > --

>> > > > Sara- different pathways lead to Nirvana.

>> > > >

>> > > >

>> > > >

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That is HEAR - even spell check doesn't help sometimes!!!!

>

>

> Sara, yes I have a recliner but he says it is not comfortable with his hip.

> He has a back scratcher in his room that he has been using to bang on the

> wall to get my attention. I could rap him with it. Our little dog was so

> annoyed he jumped on the bed and bit it. I took the back scratcher away last

> night and slept. Today he seems to be doing better.

> Charlyne

>

>

>

> >>

> >> From: Jayne <jacksonsmom99@ yahoo.com <jacksonsmom99% 40yahoo.com> >

> >> Subject: Charlyne

> >> To: @yahoogrou ps.com <%40yahoog roups.com>

> >> Date: Thursday, January 14, 2010, 10:29 AM

> >>

> >>

> >>

> >> Charlyne,

> >> Thinking of you today and hoping things go well for your husband. Three

> >> months of recovery! Is everything okay, I must have missed something

> here.

> >> Thinking of you and sending good wishes, good juju and lots of prayers

> and

> >> hugs,

> >> Jayne in Maine

> >>

> >>

> >> > > >

> >> > > > >

> >> > > > >

> >> > > > > Anyone have any information to share about Circle Of Friends?

> >> Anyone

> >> > > use it

> >> > > > > with their child at school? is really embracing friends

> in

> >> his

> >> > > > > typical class - talking about them all the time and really

> wanting

> >> to

> >> > > play

> >> > > > > with friends. There are several students in his class who are

> >> perfect

> >> > > for

> >> > > > > piloting a program like COF for him.

> >> > > > >

> >> > > > > If anyone has any info on COF, I'm open to reading about it.

> >> > > > >

> >> > > > > Thanks everyone,

> >> > > > > Jayne

> >> > > > >

> >> > > > >

> >> > > > >

> >> > > >

> >> > > >

> >> > > >

> >> > > > --

> >> > > > Sara- different pathways lead to Nirvana.

> >> > > >

> >> > > >

> >> > > >

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  • 3 weeks later...

Sara:

Isaac does not. In the past we have had people who have let me know with

both boys when something has been wrong but this is 6th grade and a new

school.

I think the issue this time around is that when he started school they gave

him no supervision in the afternoon. I don't know how they rationalized

this because if you read his IEP you would think that this is a kid who

needs supervision but anyway, about October he started to get into big

trouble and by November they made a big deal about him spending recess with

a male aide who had a group of boys. They all play basketball every lunch

recess. I think Isaac LOVES this group. His basketball game has improved

immensely and this is the only place it could have happened. Remember he is

very tall for his age and he is a wonderful shade of brown. I think most of

the kids in the group are black. The aide is. Our experience has always

been that African American kids always play with my boys and say hi to them

at the store, etc... white kids, not so much, not even at church.

Madison has one of the worst rates of racial disparity in the school system

in the nation. So this plays a part though not in a way that I can easily

pin point. When they take away his lunch recess, they take away the only

time Isaac is encouraged to be informal with other kids all day. He is

fully included in academics but it is awkward. If he borrows a pencil, he

is pounced on by the aide. It is called stealing if Isaac does it. When

the other kids do it, it is project work. The aide is very rigid. We have

been unable to get her to see the " spirit " of the act rather than just the

act itself. Sometimes he does take things, sometimes he is just being like

all the other kids and yet gets in big trouble for no reason. This much, he

can explain.

I am afraid to tell the special education teacher how much lunch recess

means to Isaac (and I've only figured it out recently myself) because I am

afraid she will use it to justify her behavior. I am afraid she will say,

" if this group is so special to him then this is the best consequence ever! "

I think, just from what Isaac says and how he acts, that this group is so

special it should never be messed with. She is hurting his self-esteem and

sense of belonging by using this as a consequence. She will never

understand how lonely he is and to be included (as an equal) this one time

during every day should be honored.

I have tried to get them to see all the logical reasons not to use this

consequence. Even simply, this consequence was only supposed to be used if

he did something really bad (made an inappropriate sexual comment - not that

he understands these!) but they have started using it for him being sassy.

But even then we disagree. His aide wrote me a note on Monday saying, " when

I told Isaac to get to work he told me, you get to work! " And I'm trying to

figure out why this was worth a note. He is 13! Some things really could

just be ignored.

Whether consciously or not, they have figured out that they can push my

buttons by taking away Isaac's recess and so they are going to do it. I

have given Isaac the pep talk, " it is up to you. Don't lose recess. You

are the only one who can fix this " . But I think it is really an unfair

burden to put on a kid with DS and PDD to be the more mature one in this

circumstance, especially since he has lost recess for ridiculously small

offenses.

And I do feel like a pretty lousy mom for not being able to help him fix

this. I have gone to the Director of Special Education and he led me to

believe that he totally agreed and was quite appalled by how things have

gone but that hasn't changed anything. At the moment, we have agreed that

the aide in the classroom will receive training in how to work with Isaac.

It is my hope that her training will be in a place where others can see and

that EVERYONE will learn.

I don't think anyone is hurting Isaac. I think that this his special

education teacher has figured out how to push Isaac's buttons and for some

reason (that I will never understand) has a need to do it. Sorry, I didn't

mean to go on and on, but I am always surprised when special education

teachers, rather than see what Isaac can do, choose to complain about why he

isn't typical. I want to say to them, " Isaac will learn many more skills

but he will never by typical. I didn't know that was the goal. "

Lori

Mom to Isaac, 13 and Tony, 11

_____

From: [mailto: ] On Behalf

Of Sara Cohen

Sent: Thursday, February 11, 2010 2:47 PM

To:

Subject: Re: Not so Funny - Charylne

Lori: Dopes Isaac have any NT kids who are 'friends " or buddies of ISaac's

who could give you the scoop? Any parent cvolunteers in the school who may

have seen or heard something?

I would never have known about the abuse of my son by a teacher if someone

had not finally 'squeeled' to me. Whispers down the lane are a big help in

protecting our kids - as long as we protect the sources.

On Thu, Feb 11, 2010 at 3:31 PM, Lori <uccpowelltds (DOT)

<mailto:uccpowell%40tds.net> net> wrote:

>

>

> I just love it when other people have mornings like I do. Though I don't

> think Isaac would go quite as far as your buddy Zeb did. I must be a

> crankier mom. He would have owe me a lot of work, (work is a big

> consequence in our house, anything from sweeping the floor to doing extra

> math worksheets) if he pulled what Zeb pulled.

>

> The good news is that Zeb's trigger was very contained. He is tired of

> winter and winter coats and if you are going to drive him then he is going

> to be Mr. Cool and wear whatever he wants.

>

> There were many mornings have winter break when I would go to get Isaac up

> for school (first clue something is wrong because Isaac is usually first

> one

> up in the house) and Isaac would refuse to get up. He would say, " I'm not

> going to school, my teacher is mean " and it would take me twenty minutes

> and

> numerous threats before he would finally get moving. For him it is all

> mixed up with the school. Is his teacher really mean (I think so but I

> don't KNOW so) or is he just being Isaac.

>

> From the outside it looks like Zeb''s intentions were a little more

> contained.

>

> Next time he tries that you could tell him you are going to put a curse on

> him!

>

> With lots of sympathy,

>

> Lori

>

> Mom to Isaac and Tony

>

>

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