Re: A quick hello--to Bonnie

[Guest guest]

" It is also sadly true that if Patty were either more abled or more disabled

life would be easier. That's a hard statement but beyond true. If she were

more disabled she'd have a chance for some living opportunities separate from

us here at home. If she were more abled she'd be on her way and out of the

house. But none of that is true for Patty. She remains the " tweener " as we

call it. She's always in between categories for everything. "

This is a very powerful statment, and I think it really sums up the root

source of all of my frustration from fighting " the system " (and I haven't been

fighting the fight for very long...). Evan is in so many ways a " tweener "

too--obviously disabled and delayed, but not severly enough to qualify for the

assistance that would be so helpful, that might possibly over time move him from

the " between " to the " independant " category. Our FRC (family resource

coordinator, for those of you not involved with early intervention currently)

made a point a few weeks ago that I totally agree with: If we have the medical

capabilities to save babies like Evan (or Patty, or any like kiddos), then we

also need to have the social conscion to provide all the services they are going

to need to maximze development and allow for a decent quality of life for that

individual and the family. Period.

Please give Kris a hug from our family. I'm glad to hear that therapy is

going well for her, and she's getting back on track for her professional goals.

It takes a strong person to be able to get through the stress of a graduate

program by itself, let along with other life stress.

(mom to Evan, 18 months)

---------------------------------

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

I so know how that is Bonnie. There are a few home services i just dont

quite qualify for. I dont think ive asked point blank but i asked kinda off

hand how to get this home cleaning service (someone to come in a couple

times a week sort of thing.)

Now thankfully cdbra has gottten me the deafblind lable so (I HOPE, it

better or im gonna get squirrly!!!) I can get like 20 hours of intervienor

services a week.

Now if only I could work on this daytime energy/sleep thing. I had a second

sleep study. I talk to the doctor on the 29th (monday) of this month so

hopefully I will get some answers. If not I go back to my other doc

(counceling doc). I see her before the sleep doc though so I will discuss

whats up so far. Im glad though the sleep doc is going to keep trying to

look untill we find a sollution. That is very incourraging. I hate it when

my old doc would run one test, test was negitive, oh must be that i dont

have a problem.... *roll eyes*

I dunno why though i dreaded writing all this. I guess i didnt want everyone

to think oh everything is fine cause im still in the looking for the answer

stage lol. At least im moving in a forward direction. I still think i need

to limit my internet and computer time so dont be surprized if i dont

respond for lengthy periods of time. might just mean i didnt have anything

positive to contribute.

Chantelle

>

> " It is also sadly true that if Patty were either more abled or more

> disabled

> life would be easier. That's a hard statement but beyond true. If she were

> more disabled she'd have a chance for some living opportunities separate

> from

> us here at home. If she were more abled she'd be on her way and out of the

> house. But none of that is true for Patty. She remains the " tweener " as we

> call it. She's always in between categories for everything. "

>

> This is a very powerful statment, and I think it really sums up the root

> source of all of my frustration from fighting " the system " (and I haven't

> been fighting the fight for very long...). Evan is in so many ways a

> " tweener " too--obviously disabled and delayed, but not severly enough to

> qualify for the assistance that would be so helpful, that might possibly

> over time move him from the " between " to the " independant " category. Our

> FRC (family resource coordinator, for those of you not involved with early

> intervention currently) made a point a few weeks ago that I totally agree

> with: If we have the medical capabilities to save babies like Evan (or

> Patty, or any like kiddos), then we also need to have the social conscion to

> provide all the services they are going to need to maximze development and

> allow for a decent quality of life for that individual and the

> family. Period.

>

> Please give Kris a hug from our family. I'm glad to hear that therapy is

> going well for her, and she's getting back on track for her professional

> goals. It takes a strong person to be able to get through the stress of a

> graduate program by itself, let along with other life stress.

>

> (mom to Evan, 18 months)

>

>

>

>

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

> Everyone is raving about the all-new Yahoo! Mail beta.

>

>

[Guest guest]

sarah i like wat u said

>

> I so know how that is Bonnie. There are a few home services i just dont

> quite qualify for. I dont think ive asked point blank but i asked kinda

> off

> hand how to get this home cleaning service (someone to come in a couple

> times a week sort of thing.)

>

> Now thankfully cdbra has gottten me the deafblind lable so (I HOPE, it

> better or im gonna get squirrly!!!) I can get like 20 hours of intervienor

> services a week.

>

> Now if only I could work on this daytime energy/sleep thing. I had a

> second

> sleep study. I talk to the doctor on the 29th (monday) of this month so

> hopefully I will get some answers. If not I go back to my other doc

> (counceling doc). I see her before the sleep doc though so I will discuss

> whats up so far. Im glad though the sleep doc is going to keep trying to

> look untill we find a sollution. That is very incourraging. I hate it when

> my old doc would run one test, test was negitive, oh must be that i dont

> have a problem.... *roll eyes*

>

> I dunno why though i dreaded writing all this. I guess i didnt want

> everyone

> to think oh everything is fine cause im still in the looking for the

> answer

> stage lol. At least im moving in a forward direction. I still think i need

> to limit my internet and computer time so dont be surprized if i dont

> respond for lengthy periods of time. might just mean i didnt have anything

> positive to contribute.

>

> Chantelle

>

> On 1/11/07, Key Storrs

<evansmomndad@...<evansmomndad%40yahoo.com>>

> wrote:

> >

> > " It is also sadly true that if Patty were either more abled or more

> > disabled

> > life would be easier. That's a hard statement but beyond true. If she

> were

> > more disabled she'd have a chance for some living opportunities separate

> > from

> > us here at home. If she were more abled she'd be on her way and out of

> the

> > house. But none of that is true for Patty. She remains the " tweener " as

> we

> > call it. She's always in between categories for everything. "

> >

> > This is a very powerful statment, and I think it really sums up the root

> > source of all of my frustration from fighting " the system " (and I

> haven't

> > been fighting the fight for very long...). Evan is in so many ways a

> > " tweener " too--obviously disabled and delayed, but not severly enough to

> > qualify for the assistance that would be so helpful, that might possibly

> > over time move him from the " between " to the " independant " category. Our

> > FRC (family resource coordinator, for those of you not involved with

> early

> > intervention currently) made a point a few weeks ago that I totally

> agree

> > with: If we have the medical capabilities to save babies like Evan (or

> > Patty, or any like kiddos), then we also need to have the social

> conscion to

> > provide all the services they are going to need to maximze development

> and

> > allow for a decent quality of life for that individual and the

> > family. Period.

> >

> > Please give Kris a hug from our family. I'm glad to hear that therapy is

> > going well for her, and she's getting back on track for her professional

> > goals. It takes a strong person to be able to get through the stress of

> a

> > graduate program by itself, let along with other life stress.

> >

> > (mom to Evan, 18 months)

> >

> >

> >

> >

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

> > Everyone is raving about the all-new Yahoo! Mail beta.

> >

> >