Re: Flushed down the toilet (Getting away?)

[Guest guest]

Jayne - I empthasize with your situation and pray that things get better for you and your daughter. On a side note, I'd like to bring up the topic of getting away for a short period of time which is a suggestion brought up by . Getting away would be wonderful, but honestly how many of us can truly get away? And if we could get away, whose going to take care of our kids? Are there any resources for this? I know that we have several respite programs that help out for a few hours or provide over night care, but I don't think there's nothing really out there to really allow us to get away? As a single mom, I struggle every single day to juggle my daughter's autism, work, and just trying to make ends meet. My daughter's therapy are really expensive, we are still on this infamous medicare waiting list with no hope of really ever getting

services, making sure my daughter's education is appropriate, and of course my life would not be complete without fighting with insurance for coverage. It is exhausting, and I've had friends tell me to just "get away" but really I don't see how that's possible. Am I missing something here? Can we really get away? Annette Barbontin wrote:  Jayne, We've all been there and understand. No one has wished this upon ourselves but we are here and need to look at the bright spots in our lives (few as they may be). Pleas forgive me if I'm being presumptuous but I would suggest that perhaps your at a time where you need a break of some kind away from it all. This usually helps me. It maybe hard to do and I don't know your specific situation but if you can get away for a short period it will reignite your perspective to keep keeping on. I will certainly keep you and your family in our prayers and hopefully your days will be brigther. Understandingly Yours, Flushed down the toilet I'm heartsick. I get a call today from my daughter's afterschool telling me she got off the school bus without her Cochlear Device. It was no where in

her backpack and no note from the teacher. I go rushing to the school (I knew it wasn't on the bus since she finally got a 1-1 there) to search her classroom. After several calls (the autism coach, the teacher each left a voicemail) I find out that my daughter flushed it down the toilet at 1:30. It now was 5 pm. I guess the loss of a $7,800. medical equipment doesn't warrant an immediate call to the parent. Her IEP states she is to be supervised in the bathroom in three differant places. I give up. I am so angry at her autism right now. At home when I asked her about it she laughed. I fed her dinner and we went out. Of course her PCA hadn't shown up, that's the fifth since Sept 2. I love this medicaid paying for it. None of the medicaid approved agencies have Aids that have any experience with autism. The last one would stand there and say " I can't believe she is doing that SIB" and

I would think "I can't believe you are standing there watching her ( I was across the room) and not doing anything to stop her. My daughter has been manic off and on for 10 days now. Anyway I went out because I was afraid I might take my anger out on her, and she never asked for this either. Sorry to vent.... Thanks for listening, Jayne Mikismom

[Guest guest]

Thanks. Don't worry, I'm not upset with your suggestion, I just wish there were better resources and support for us. I guess for now I will just have to be content fantasizing about winning the lottery... Barbontin wrote: Annette, I really understand how you feel. I offered the suggestion because it works for me

when I'm pissed and can't take it any more. I don't mean a long extended holiday just a day or two away from your routine may help. What helped me, and I was surprised by their reaction, was when I reached out to my family members. They were willing to help. I did write detailed instructions of course and we moved slow (an hour or two at a time) so my son got used to it. I realize every situation is different and I didn't mean to upset anyone. -----

Original Message ----- From: A P To: sList Sent: Monday, September 29, 2008 7:38 PM Subject: Re: Flushed down the toilet (Getting away?) Jayne - I empthasize with your situation and pray that things get better for you and your daughter. On a side note, I'd like to bring up the topic of getting away for a short period of time which is a suggestion brought up by . Getting away would be wonderful, but honestly how many of us can truly get away?

And if we could get away, whose going to take care of our kids? Are there any resources for this? I know that we have several respite programs that help out for a few hours or provide over night care, but I don't think there's nothing really out there to really allow us to get away? As a single mom, I struggle every single day to juggle my daughter's autism, work, and just trying to make ends meet. My daughter's therapy are really expensive, we are still on this infamous medicare waiting list with no hope of really ever getting services, making sure my daughter's education is appropriate, and of course my life would not be complete without fighting with insurance for coverage. It is exhausting, and I've had friends tell me to just "get away" but really I don't see how that's possible. Am I missing something here? Can we really get away? Annette Barbontin <jbarbontinbellsouth (DOT) net> wrote:  Jayne, We've all been there and understand. No one has wished this upon ourselves but we are here and need to look at the bright spots in our lives (few as they may be). Pleas forgive me if I'm being presumptuous but I would suggest that perhaps your at a time where you need a break of some kind away from it all. This usually helps me. It maybe hard to do and I don't know your specific situation but if you can get away for a short period it will reignite your perspective to keep keeping on. I will certainly keep you

and your family in our prayers and hopefully your days will be brigther. Understandingly Yours, Flushed down the toilet I'm heartsick. I get a call today from my daughter's afterschool telling me she got off the school bus without her Cochlear Device. It was no where in her backpack and no note from the teacher. I go rushing to the school (I knew it wasn't on the bus since she finally got a 1-1 there) to search her classroom. After several calls (the autism coach, the teacher each left a voicemail) I find out that my daughter flushed it down the toilet at 1:30. It now was 5 pm. I guess the loss of a $7,800. medical equipment doesn't warrant an immediate call to the parent. Her IEP states she is to be supervised in the bathroom in three differant places. I give up. I am so angry at her autism right now. At home when I asked her about it she laughed. I fed her dinner and we went out. Of course her

PCA hadn't shown up, that's the fifth since Sept 2. I love this medicaid paying for it. None of the medicaid approved agencies have Aids that have any experience with autism. The last one would stand there and say " I can't believe she is doing that SIB" and I would think "I can't believe you are standing there watching her ( I was across the room) and not doing anything to stop her. My daughter has been manic off and on for 10 days now. Anyway I went out because I was afraid I might take my anger out on her, and she never asked for this either. Sorry to vent.... Thanks for listening, Jayne Mikismom

[Guest guest]

Annette,

What you talk about “getting away,” are you

thinking  of something temporary or long-term?  I mean, would a weekly

dinner-and-movie with friends do it, or would it need to be something much

bigger?

From:

sList [mailto:sList ] On Behalf

Of A P

Sent: Wednesday, October 01, 2008 5:34 PM

To: sList

Subject: Re: Flushed down the toilet (Getting away?)

Thanks. Don't worry, I'm not upset with your

suggestion, I just wish there were better resources and support for us. I

guess for now I will just have to be content fantasizing about

winning the lottery...

Barbontin wrote:

Annette,

I

really understand how you feel. I offered the suggestion because it works

for me when I'm pissed and can't take it any more. I don't mean a long

extended holiday just a day or two away from your routine may help.

What

helped me, and I was surprised by their reaction, was when I reached

out to my family members. They were willing to help. I

did write detailed instructions of course and we moved slow (an hour or

two at a time) so my son got used to it.

I

realize every situation is different and I didn't mean to upset anyone.

Flushed down the toilet

I'm heartsick. I get a call today from my daughter's

afterschool telling me she got off the school bus without her Cochlear Device.

It was no where in her backpack and no note from the teacher. I go

rushing to the school (I knew it wasn't on the bus since she finally got a 1-1

there) to search her classroom. After several calls (the autism coach,

the teacher each left a voicemail) I find out that my daughter flushed it down

the toilet at 1:30. It now was 5 pm. I guess the loss of a $7,800.

medical equipment doesn't warrant an immediate call to the parent. Her

IEP states she is to be supervised in the bathroom in three differant

places. I give up. I am so angry at her autism right now. At

home when I asked her about it she laughed.

I fed her dinner and we went out. Of course her PCA

hadn't shown up, that's the fifth since Sept 2. I love this medicaid

paying for it. None of the medicaid approved agencies have Aids that have

any experience with autism. The last one would stand there and say "

I can't believe she is doing that SIB " and I would think " I

can't believe you are standing there watching her ( I was across the room) and

not doing anything to stop her. My daughter has been manic off and on for

10 days now. Anyway I went out because I was afraid

I might take my anger out on her, and she never asked for this

either. Sorry to vent....

Thanks for listening,

Jayne

Mikismom