RE: L. - serious trouble - long

[Guest guest]

Martha,

I have only just arrived home and will respond longer, later BUT--they cannot do

anything without your permission--You are 's guardians. They had no

business or right to contact a psychiatrist and make an appt. without your

permission. IMHO, do not let them take her. If you take her, that is one

thing; they are not reliable reporters, again IMHO.

more in a bit, but I wanted to get that to you so you know I have read this.

xo

pam

[Guest guest]

(aerghhhhhhhhhhhhhhhhhhh stupid people see what she says then get a second

opion i sometimes think itd be interesting to knwo if they do knwo charge bet

your right and she doesnt arghhhhhhhhh hugs ellen

>

> Hi, all,

> I've been waiting since early morning for our " case manager " to call me

> back after she got off the phone to go over with others the

> latest mess with 's ISL. I'm waiting, and I'm going nuts.

> Andy and I had a phone call from the owner of the agency (I guess that's

> what I should call her) informing us that she had made an appointment

> with a psychiatrist for next Tuesday; mind you, she made it with

> someone the CHARGE Foundation folks (who've been so helpful) hadn't

> recommended and who probably has no expertise, much less knowledge

> of/ in CHARGE. This woman obviously wants highly medicated.

> When I objected to any change in meds, I was immediately brushed off. It

> would be different if we were seeing the same things at home that they're

> seeing. At Perkins, it was always reassuring that generally what we

> experienced at home was mirrored at P. I just know the " house " wants her

> drugged into total submission --- one of the clients is on something like

> 10 mg Ativan daily, if my source is correct, and literally just sits and

twirls

> things all day.

> I aim/email staff nightly (remember, they're all deaf). They've reported

> that things are now " great, " etc after the drug withdrawal fiasco. Imagine

> our shock this a.m. when agency owner reported that had injured

> someone's disc and had (Pam and Laurie, heads up here) bitten

> someone's breast (Pam, Laurie, and I have written off list about this: they

> don't believe that has turned to aggression of this sort).

> Andy delayed his office hours after the call from Fulton. I didn't even

> wash my face until 12:30. I am so terribly thrown. We want to move

> back to our house this weekend while we continue to set up a new house

> for her here, train staff (two already hired), etc. That's what our local

> Regional Center people are checking. There's some sort of 30 day notice

> rule --- I'm sure we'll ignore it but still do not understand a lack of a

phone

> call from the locals.

> And what if is doing these things --- out of boredom or to get

> interaction, however undesirable? We saw that here years ago when

> things deteriorated so with the district.

> Back after a break to run to the Regional Center to sign releases and to

> get a most welcome pat on the back... Apparently the 30 day notice

> provision is worthless; the Fulton house won't be paid after leaves,

> probably on Saturday. Andy is scared of everyone there knowing what

> we're doing in case they take it out on K. and would fundamentally just like

> to show up. I, along with our case manager, disagree. Case manager (a

> wonder - ain't that nice for a change) wants to be the one to phone agency

> owner tomorrow, but I have qualms about that and think I'll call, too. I

> might be a wimp, but I darn sure won't show it. If I can handle the Federal

> Court of Appeals, surely this will be easier.

> Sorry, I just need to ramble.

> Notes for various people: Meg, Michele, Larry if you're lurking, Beth

> Jordan if you are, too: I'm sure that I'll be in contact soon. Our locals are

> TOTALLY open to input. I know how to " handle " 's behavior, if it's

> really reappeared, but right now I just feel like a mother who wants others

> to help until I'm " up " again.

> Pam and Laurie: I got back so late this afternoon that you'd left when I

> tried to call at P. We definitely need to talk. I would very much like your

> permission to forward your last emails to 's case manager --- you

> made such a strong case about not biting breasts, etc. I think they

> need your input.

> Ok. I'm going to stop for now and have a cry. Doubtless, I'll return later

> tonight or tomorrow. Right now, I'm somewhere in disbelief and just pain.

> Love to you all for being there --- Martha

> P.S., despite the current mess, I'll try to write before K. returns what we've

> needed to do to begin to set up her new home here.

>

[Guest guest]

pam you know i didnt think they could but then i have seen it happen

with otu the parents oh yes loads of times hugs ellen

>

> Martha,

> I have only just arrived home and will respond longer, later BUT--

they cannot do anything without your permission--You are 's

guardians. They had no business or right to contact a psychiatrist and

make an appt. without your permission. IMHO, do not let them take

her. If you take her, that is one thing; they are not reliable

reporters, again IMHO.

>

> more in a bit, but I wanted to get that to you so you know I have

read this.

> xo

> pam

>

>

>

[Guest guest]

martha hope didnt scare you with that note to pam but its the truth it

does happen

>

> Martha,

> I have only just arrived home and will respond longer, later BUT--

they cannot do anything without your permission--You are 's

guardians. They had no business or right to contact a psychiatrist and

make an appt. without your permission. IMHO, do not let them take

her. If you take her, that is one thing; they are not reliable

reporters, again IMHO.

>

> more in a bit, but I wanted to get that to you so you know I have

read this.

> xo

> pam

>

>

>

[Guest guest]

Martha,

I think you are doing the right thing; my heart is aching for you and all

you're going through. I wish I had something more eloquent or helpful to say -

my thoughts are with you guys.

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

Oh, Martha. How I wish I could be of some help to you. I simply haven't

been far enough down the road to know how to make a difference. I'm

learning a lot about adult services, but it's a slow learning process and

all my knowledge is about IL. If you come up with a way that I can be

helpful, you let me know.

Otherwise, I will continue to send you and K strength and peace to get

through this. We can only imagine what she has been going thru. Even if

the situation isn't " abusive " or " horrible " , you know that a simply " bad "

situation could make any of us crazy. And, yes, someone might prefer to

medicate me than deal with my reaction to living in a less than ideal

environment. And I'd sure hope my loved ones would protect me from that. I

imagine K will be so relieved to have you come for her and bring her home

where it's safe and comfortable.

I am very interested in knowing the process you've been thru to get her new

home in order. But your first priority is getting her home and set up. If

you only have time for bits and pieces and vents along the way, we can wait

for the full story after the fact.

I commend you for being such a strong advocate for her and staying so

involved in her life. I know we can't imagine it, but there really are

parents who would have driven off and given no thought as to how staff would

medicate or mistreat their adult child in order to " manage " them.

Michele W

Aubrie's

[Guest guest]

YOu are right, Ellen. Thank God that 's parents are so involved and know

every part of her and can " get to her " .

pam

[Guest guest]

Martha,

can we talk tomorrow? I started my day VERY early today with Jury Duty--a

shaken baby case where the baby was left blind and brain damaged--do you think

they wanted me on the jury???

Anyway, I would like to talk voice to voice. I have a clinical meeting until

9:15 (I know, too early for you anyway smile) but will be in my office and can

call you at the time of your choice. Just let me know.

sending you cyber hugs (which you can then imagine because you have had the real

thing!) and postive thoughts that this can be fixed for you and Andy and of

course, the lovely Miss Kate.

pam

[Guest guest]

No I don't suppose they would want any of us as jurors for that case. How

do you find anyone in such situations? Kim

On 1/25/06 7:09 PM, " pamela.ryan@... "

wrote:

> a shaken baby case where the baby was left blind and brain damaged--do you

> think they wanted me on the jury???

[Guest guest]

Pam,

yes, yes, I need to talk. However, we've stopped E's phone line (dah,

wonder why it took us so long) and must rely on ours (cell phone is

irritable). I'll almost certainly be waiting for calls on and off tomorrow, and

Andy and I have a meeting at 3:00 (4:00 for you). Perhaps it would be best

if I call when it looks as though our phone can be free and know that I'll be

here.

Pam, this is the pits upon pits.

Hugs, Martha

[Guest guest]

I have never been asked for jury duty. Im glad though. Wouldnt do me

any good i usualy miss stuff cause of my deaf/blindness.

Gosh where do they decide on who will be a certain jury.

Chantelle

[Guest guest]

M,

no problem, call when you can and if you want to call tomorrow night at home, I

won't be there until after 9 (tap dance class!), but you are more than welcome

to call after that .

pam

[Guest guest]

Pam, what about my forwarding your last email on behavior, breasts, etc.

to our case manager. Won't do it without your ok but really think she

needs input from other than A. and me. Martha

[Guest guest]

Oops, Pam - just remembered that I also have an appointment at 1:30

(2:30 for you) to meet with the person who'll probably be renting her

house. This is important --- an older delightfully odd " bird " (oh, how we

liked her) who has to be led to understand about ... Martha

[Guest guest]

M,

you can send anything of mine that you want and that you think will be

helpful--it is my pleasure and desire for K.

pam

[Guest guest]

Martha,

I've only just resubscribed to the list after a long absence and was

so very saddened to read your post...my heart goes out to you guys...

thinking of you and weeping with you,

Sharon from West Oz

>Hi, all,

> I've been waiting since early morning for our " case manager " to call me

>back after she got off the phone to go over with others the

>latest mess with 's ISL. I'm waiting, and I'm going nuts.

> Andy and I had a phone call from the owner of the agency (I guess that's

>what I should call her) informing us that she had made an appointment

>with a psychiatrist for next Tuesday; mind you, she made it with

>someone the CHARGE Foundation folks (who've been so helpful) hadn't

>recommended and who probably has no expertise, much less knowledge

>of/ in CHARGE. This woman obviously wants highly medicated.

>When I objected to any change in meds, I was immediately brushed off. It

>would be different if we were seeing the same things at home that they're

>seeing. At Perkins, it was always reassuring that generally what we

>experienced at home was mirrored at P. I just know the " house " wants her

>drugged into total submission --- one of the clients is on something like

>10 mg Ativan daily, if my source is correct, and literally just sits

>and twirls

>things all day.

> I aim/email staff nightly (remember, they're all deaf). They've reported

>that things are now " great, " etc after the drug withdrawal fiasco. Imagine

>our shock this a.m. when agency owner reported that had injured

>someone's disc and had (Pam and Laurie, heads up here) bitten

>someone's breast (Pam, Laurie, and I have written off list about this: they

>don't believe that has turned to aggression of this sort).

> Andy delayed his office hours after the call from Fulton. I didn't even

>wash my face until 12:30. I am so terribly thrown. We want to move

>back to our house this weekend while we continue to set up a new house

>for her here, train staff (two already hired), etc. That's what our local

>Regional Center people are checking. There's some sort of 30 day notice

>rule --- I'm sure we'll ignore it but still do not understand a lack

>of a phone

>call from the locals.

> And what if is doing these things --- out of boredom or to get

>interaction, however undesirable? We saw that here years ago when

>things deteriorated so with the district.

> Back after a break to run to the Regional Center to sign releases and to

>get a most welcome pat on the back... Apparently the 30 day notice

>provision is worthless; the Fulton house won't be paid after leaves,

>probably on Saturday. Andy is scared of everyone there knowing what

>we're doing in case they take it out on K. and would fundamentally just like

>to show up. I, along with our case manager, disagree. Case manager (a

>wonder - ain't that nice for a change) wants to be the one to phone agency

>owner tomorrow, but I have qualms about that and think I'll call, too. I

>might be a wimp, but I darn sure won't show it. If I can handle the Federal

>Court of Appeals, surely this will be easier.

> Sorry, I just need to ramble.

> Notes for various people: Meg, Michele, Larry if you're lurking, Beth

>Jordan if you are, too: I'm sure that I'll be in contact soon. Our locals are

>TOTALLY open to input. I know how to " handle " 's behavior, if it's

>really reappeared, but right now I just feel like a mother who wants others

>to help until I'm " up " again.

> Pam and Laurie: I got back so late this afternoon that you'd left when I

>tried to call at P. We definitely need to talk. I would very much like your

>permission to forward your last emails to 's case manager --- you

>made such a strong case about not biting breasts, etc. I think they

>need your input.

> Ok. I'm going to stop for now and have a cry. Doubtless, I'll return later

>tonight or tomorrow. Right now, I'm somewhere in disbelief and just pain.

> Love to you all for being there --- Martha

>P.S., despite the current mess, I'll try to write before K. returns what we've

>needed to do to begin to set up her new home here.

>

>

>Membership of this email support groups does not constitute

>membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

>Canada.

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org - for CHARGE Syndrome

>Canada information and membership, please visit

>http://www.chargesyndrome.ca or email info@... .

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Ellen,

It's after midnight here, and I have two very important meetings tomorrow

and must crash. it's important to the selfish me, however, that you know

how much your posts about 's ordeal have prodded me along. I'm

so very tired of fighting; we've been through more court battles than I like to

remember just to have at Perkins. This won't take a court battle, but I

need to be tired for awhile, and I just don't have the time. Somehow,

reading your posts makes things easier. Thank you. Martha

[Guest guest]

there are time martha when i feel im not helping anyone coz there just arent

any answers i take lesly and amielie for an example basicly jsut hard to

know what to do but then i guess i do try lol hugs ellen

>

> Ellen,

> It's after midnight here, and I have two very important meetings

> tomorrow

> and must crash. it's important to the selfish me, however, that you know

> how much your posts about 's ordeal have prodded me along. I'm

> so very tired of fighting; we've been through more court battles than I

> like to

> remember just to have at Perkins. This won't take a court battle,

> but I

> need to be tired for awhile, and I just don't have the time. Somehow,

> reading your posts makes things easier. Thank you. Martha

>

>

>

>

[Guest guest]

should see with my friends allways helping htem with fodo lol

>

> there are time martha when i feel im not helping anyone coz there just

> arent any answers i take lesly and amielie for an example basicly jsut hard

> to know what to do but then i guess i do try lol hugs ellen

>

>

> >

> > Ellen,

> > It's after midnight here, and I have two very important meetings

> > tomorrow

> > and must crash. it's important to the selfish me, however, that you

> > know

> > how much your posts about 's ordeal have prodded me along. I'm

> > so very tired of fighting; we've been through more court battles than I

> > like to

> > remember just to have at Perkins. This won't take a court battle,

> > but I

> > need to be tired for awhile, and I just don't have the time. Somehow,

> > reading your posts makes things easier. Thank you. Martha

> >

> >

> >

> >

[Guest guest]

Sharon,

welcome back!!!

pam

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Perkins School for the Blind, Deafblind Program

175 North Beacon St.

Watertown, MA 02472

> ----------

> From: CHARGE on behalf of Sharon Barrey Grassick

> Reply To: CHARGE

> Sent: Wednesday, January 25, 2006 10:39 PM

> To: CHARGE

> Subject: Re: L. - serious trouble - long

>

> Martha,

> I've only just resubscribed to the list after a long absence and was

> so very saddened to read your post...my heart goes out to you guys...

> thinking of you and weeping with you,

> Sharon from West Oz

>

> >Hi, all,

> > I've been waiting since early morning for our " case manager " to call me

> >back after she got off the phone to go over with others the

> >latest mess with 's ISL. I'm waiting, and I'm going nuts.

> > Andy and I had a phone call from the owner of the agency (I guess that's

> >what I should call her) informing us that she had made an appointment

> >with a psychiatrist for next Tuesday; mind you, she made it with

> >someone the CHARGE Foundation folks (who've been so helpful) hadn't

> >recommended and who probably has no expertise, much less knowledge

> >of/ in CHARGE. This woman obviously wants highly medicated.

> >When I objected to any change in meds, I was immediately brushed off. It

> >would be different if we were seeing the same things at home that they're

> >seeing. At Perkins, it was always reassuring that generally what we

> >experienced at home was mirrored at P. I just know the " house " wants her

> >drugged into total submission --- one of the clients is on something like

> >10 mg Ativan daily, if my source is correct, and literally just sits

> >and twirls

> >things all day.

> > I aim/email staff nightly (remember, they're all deaf). They've reported

> >that things are now " great, " etc after the drug withdrawal fiasco. Imagine

> >our shock this a.m. when agency owner reported that had injured

> >someone's disc and had (Pam and Laurie, heads up here) bitten

> >someone's breast (Pam, Laurie, and I have written off list about this: they

> >don't believe that has turned to aggression of this sort).

> > Andy delayed his office hours after the call from Fulton. I didn't even

> >wash my face until 12:30. I am so terribly thrown. We want to move

> >back to our house this weekend while we continue to set up a new house

> >for her here, train staff (two already hired), etc. That's what our local

> >Regional Center people are checking. There's some sort of 30 day notice

> >rule --- I'm sure we'll ignore it but still do not understand a lack

> >of a phone

> >call from the locals.

> > And what if is doing these things --- out of boredom or to get

> >interaction, however undesirable? We saw that here years ago when

> >things deteriorated so with the district.

> > Back after a break to run to the Regional Center to sign releases and

to

> >get a most welcome pat on the back... Apparently the 30 day notice

> >provision is worthless; the Fulton house won't be paid after leaves,

> >probably on Saturday. Andy is scared of everyone there knowing what

> >we're doing in case they take it out on K. and would fundamentally just like

> >to show up. I, along with our case manager, disagree. Case manager (a

> >wonder - ain't that nice for a change) wants to be the one to phone agency

> >owner tomorrow, but I have qualms about that and think I'll call, too. I

> >might be a wimp, but I darn sure won't show it. If I can handle the Federal

> >Court of Appeals, surely this will be easier.

> > Sorry, I just need to ramble.

> > Notes for various people: Meg, Michele, Larry if you're lurking, Beth

> >Jordan if you are, too: I'm sure that I'll be in contact soon. Our locals

are

> >TOTALLY open to input. I know how to " handle " 's behavior, if it's>

> >really reappeared, but right now I just feel like a mother who wants others

> >to help until I'm " up " again.

> > Pam and Laurie: I got back so late this afternoon that you'd left when I

> >tried to call at P. We definitely need to talk. I would very much like your

> >permission to forward your last emails to 's case manager --- you

> >made such a strong case about not biting breasts, etc. I think they

> >need your input.

> > Ok. I'm going to stop for now and have a cry. Doubtless, I'll return later

> >tonight or tomorrow. Right now, I'm somewhere in disbelief and just pain.

> > Love to you all for being there --- Martha

> >P.S., despite the current mess, I'll try to write before K. returns what

we've

> >needed to do to begin to set up her new home here.

> >

> >

> >Membership of this email support groups does not constitute

> >membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

> >Canada.

> >For information about the CHARGE Syndrome

> >Foundation or to become a member (and get the newsletter),

> >please contact marion@... or visit

> >the web site at http://www.chargesyndrome.org - for CHARGE Syndrome

> >Canada information and membership, please visit

> >http://www.chargesyndrome.ca or email info@... .

> >8th International

> >CHARGE Syndrome Conference, July, 2007. Information will be

> >available at www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Martha,

You might find this person is just the person to rent to ; that her

being a " delightfully odd bird " might make her see in what many others

might not.

Kim

> Oops, Pam - just remembered that I also have an appointment at 1:30

> (2:30 for you) to meet with the person who'll probably be renting her

> house. This is important --- an older delightfully odd " bird " (oh, how we

> liked her) who has to be led to understand about ... Martha

>

>

>

>