Re: our adult children....

[Guest guest]

Martha,

What do we do about such things? What a waste of money for sure, but what a

waste of a precious life!!!!!! Every day, even as Dylan becomes more and

more able, I feel such responsibility that it will be up to us to create the

opportunity for him to have real and meaningful work in his adult life.

The idea of a community farm and farmer's market booth along with things

that were baked with the produce and all is growing stronger and stronger in

me. Not just for Dylan, but for other's as well.

Honestly, I don't want the liability, but I would love to see a neighborhood

or community where we could have our after 50 life and Dylan could have his

adult life nearby, but there were shared resources, such as therapy pools,

sensory rooms, respite, the community farm for work and so for other

families that had similar needs. Who knows what will come together in the

next 10-12 years as Dylan grows up. I just know he has so much to offer

this world, and I simply do not see as a society right now, what we have to

offer an adult Dylan.

I wish you divine guidance in finding just the right place and just the

right person to give a chance to have meaningful work and a purpose in

her life!

Kim

> Chantelle,

> You've hit something vital for all of us. At Perkins, had numerous

> jobs to teach her but also to find her interests, I think. Now, we find her

> in

> tiny Fulton, MO with nothing to do. She goes with her aides to shop, etc,

> but I think that's about all. Then, she sleeps, and I'm becoming convinced

> that's because she has nothing better to do.

> I do not know how we advocate for appropriate jobs, but it's something

> that must be done and done quickly. As Pam reminded me (and I needed

> to be reminded), in our case, neither the state nor parents spent what

> must have been at least 1 million dollars at Perkins to now have all that

> learning go down the you know what.

> We'll be meeting with our " regional center " people late next week, and I'll

> share with the list if we learn anything. These folks are appalled at what's

> happening with .

> Martha

>

>

>

>

[Guest guest]

Kim, I'm sick as the proverbial dog; Andy's horrid cold has really hit me. It

I don't make sense, just come back to me in a day or so.

Don't you think that there must be something Andy and I can be working

on NOW? I know that funding is mostly state based, but there must be

something we can at least try to start. Please think, ask questions, etc.

Even the powers-that-be here think that there's a tremendous need.

We're VERY serious about this. Martha

[Guest guest]

Martha,

I have to write now or I will forget.

I wonder since the change is so fresh; is there video tape of working

in different situations while at Perkins? I was thinking of putting a brief

video together, one that shows what she can do, and then what she is doing

now - and advocating legislatively. I know VR took a big hit just recently

with the regional centers closing. And VR was simply not enough for

individuals as complex as CHARGErs are. Somehow society must see what is

possible and then what is really happening. Maybe Bill Prouty will have

time in his busy life at some point to make a documentary.... I don't know

just grasping at straws, something has to come together.

Kim

> Kim, I'm sick as the proverbial dog; Andy's horrid cold has really hit me.

> It

> I don't make sense, just come back to me in a day or so.

> Don't you think that there must be something Andy and I can be working

> on NOW? I know that funding is mostly state based, but there must be

> something we can at least try to start. Please think, ask questions, etc.

> Even the powers-that-be here think that there's a tremendous need.

> We're VERY serious about this. Martha

>

>

>

>

>

>

>

[Guest guest]

Martha,

Kim's suggestion is a great one...we have found video to be a very

powerful tool in all kinds of ways.

Good luck,

Sharon from West Oz

>Martha,

>

>I have to write now or I will forget.

>I wonder since the change is so fresh; is there video tape of working

>in different situations while at Perkins? I was thinking of putting a brief

>video together, one that shows what she can do, and then what she is doing

>now - and advocating legislatively. I know VR took a big hit just recently

>with the regional centers closing. And VR was simply not enough for

>individuals as complex as CHARGErs are. Somehow society must see what is

>possible and then what is really happening. Maybe Bill Prouty will have

>time in his busy life at some point to make a documentary.... I don't know

>just grasping at straws, something has to come together.

>

>Kim

>

>

>

>> Kim, I'm sick as the proverbial dog; Andy's horrid cold has really hit me.

>> It

>> I don't make sense, just come back to me in a day or so.

>> Don't you think that there must be something Andy and I can be working

>> on NOW? I know that funding is mostly state based, but there must be

>> something we can at least try to start. Please think, ask questions, etc.

>> Even the powers-that-be here think that there's a tremendous need.

>> We're VERY serious about this. Martha

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

I'm actually ahead of you despite a cold that has me flat on my back. The

fantastic Perkins' voc dept gave us a great video of katie at her various

jobs as well as an unbelievable portfolio of her work situations over the

years. I think one thing that has had me so concerned is that her new

" house " has the same things... We meet with a potentional new agency

next Thursday (last week's meeting had to be postponed).

Two of 's new staff sent a photo tonight, and she looks so very happy.

This, too, gives me pause as Andy and I try to figure out what to do... I have

no idea how to download this sort of thing so that all of you can get to

know Miss K. My scanner doesn't work with my iMac. I've saved it; can I

just email it to some particular site?

Time to take meds and rest yet again.

Thanks for the suggestions - and the reminder that I already know to do

this. I swear, when we get into a muddle, we need each other!

Martha

[Guest guest]

Martha,

Your other question to Pam was depression? Dr. van Dijk feels very strongly

that our kids can get depressed with change (grief and loss) just like we

all can. He uses short term anti-depressants, but with Kate's behaviors you

would want someone really wise to monitor any medication changes. Plus she

has the impact of the change in her hormones now, so many things for her to

get accustomed to. I am glad she is happy there, so perhaps with time she

will be more lively. What do the endocrine or gyn people think about the

fatigue - is she anemic following her period; is it related to hormone

levels?

I am thinking about how Perkins handles behavioral expectations. I am

wondering if the staff can only allow her to go to bed after she has done so

long or so many other things, and then just for a certain amount of time, so

she can't just sleep whenever. Then the question becomes can she stay awake

at the activities she is doing instead of sleeping?

You do know what to do, we all just need to bounce it off each other. Is

she bored with the activities; is it the way the staff is interacting with

her during the activities; many possibilities to explore. You could even

video her doing the activities or jobs now, and notice if there is something

you really notice.

I have raised a lot of questions, knowing you don't have the answer right

now, but something I say might trigger a flash to go off, even though they

could also all be duds.

I think this is the link to the page to post pictures -

www.geocities.com/chargepictures

Good luck. I am looking forward to " meeting " her.

Kim

> I'm actually ahead of you despite a cold that has me flat on my back. The

> fantastic Perkins' voc dept gave us a great video of katie at her various

> jobs as well as an unbelievable portfolio of her work situations over the

> years. I think one thing that has had me so concerned is that her new

> " house " has the same things... We meet with a potentional new agency

> next Thursday (last week's meeting had to be postponed).

> Two of 's new staff sent a photo tonight, and she looks so very happy.

> This, too, gives me pause as Andy and I try to figure out what to do... I have

> no idea how to download this sort of thing so that all of you can get to

> know Miss K. My scanner doesn't work with my iMac. I've saved it; can I

> just email it to some particular site?

> Time to take meds and rest yet again.

>

> Thanks for the suggestions - and the reminder that I already know to do

> this. I swear, when we get into a muddle, we need each other!

> Martha

>

>

>

>

[Guest guest]

martha send it to lisa she can put it on the charge pics site ellen

>

> Martha,

>

> Your other question to Pam was depression? Dr. van Dijk feels very

> strongly

> that our kids can get depressed with change (grief and loss) just like we

> all can. He uses short term anti-depressants, but with Kate's behaviors

> you

> would want someone really wise to monitor any medication changes. Plus she

> has the impact of the change in her hormones now, so many things for her

> to

> get accustomed to. I am glad she is happy there, so perhaps with time she

> will be more lively. What do the endocrine or gyn people think about the

> fatigue - is she anemic following her period; is it related to hormone

> levels?

>

> I am thinking about how Perkins handles behavioral expectations. I am

> wondering if the staff can only allow her to go to bed after she has done

> so

> long or so many other things, and then just for a certain amount of time,

> so

> she can't just sleep whenever. Then the question becomes can she stay

> awake

> at the activities she is doing instead of sleeping?

>

> You do know what to do, we all just need to bounce it off each other. Is

> she bored with the activities; is it the way the staff is interacting with

> her during the activities; many possibilities to explore. You could even

> video her doing the activities or jobs now, and notice if there is

> something

> you really notice.

>

> I have raised a lot of questions, knowing you don't have the answer right

> now, but something I say might trigger a flash to go off, even though they

> could also all be duds.

>

> I think this is the link to the page to post pictures -

> www.geocities.com/chargepictures <http://www.geocities.com/chargepictures>

>

> Good luck. I am looking forward to " meeting " her.

>

> Kim

>

>

>

>

>

>

> > I'm actually ahead of you despite a cold that has me flat on my back.

> The

> > fantastic Perkins' voc dept gave us a great video of katie at her

> various

> > jobs as well as an unbelievable portfolio of her work situations over

> the

> > years. I think one thing that has had me so concerned is that her new

> > " house " has the same things... We meet with a potentional new agency

> > next Thursday (last week's meeting had to be postponed).

> > Two of 's new staff sent a photo tonight, and she looks so very

> happy.

> > This, too, gives me pause as Andy and I try to figure out what to do...

> I have

> > no idea how to download this sort of thing so that all of you can get to

> > know Miss K. My scanner doesn't work with my iMac. I've saved it; can I

> > just email it to some particular site?

> > Time to take meds and rest yet again.

> >

> > Thanks for the suggestions - and the reminder that I already know to do

> > this. I swear, when we get into a muddle, we need each other!

> > Martha

> >

> >

> >

> >

[Guest guest]

OK guys, I have tons to say!!!

The most important is Martha, I totally understand what you are saying and is

why Patty is now home. She's here again with nothing to do and nowhere to

go. It was a huge decision but it was one we decided with her. Now we

absolutely know it was the right one.

Now, as a board member here, there are things the CHARGE Syndrome Foundation

is moving forward to the future with. It is really an exciting time and the

future has the potential to be even brighter. But it is one that we as board

members just can't and won't think of doing without the families. That

includes fundraising, etc. Also because of the exhausting weekend meeting where

we

all worked together there came about a few new committees. Guess what one of

them is! Adults who have CHARGE Syndrome. You'll never guess who is the leader

of that committee! Yup, me! I am more than honored.

Martha, we so have to talk. That goes for all the adults who have CHARGE and

their families!

I just got back from a weekend in New Hampshire with tons of rain! We go at

this time every year in memory of my fathers birthday, and to de-stress. It

didn't work. I have to get my thoughts together before I go on.

Just know-Martha I am with you on all of this.

And about the sleep, yes Patty sleeps tons now. As a matter of fact if she

doesn't sleep by a specific time she is on edge and isn't healthy. She now

goes to bed around 8 or 9 pm. She gets up around 6 but it does her good. When

she is menstruating she sleeps more. There have even been a few times she even

takes naps. That just isn't her.

Is there depression? Yea probably but sometimes I think if I were Patty I

would be more than depressed and she's not. She is so positive about her future

and she makes her days count even when they stink! I also think there are

unique pressures on our children. They just feel them deeper than the rest. I

wish you could have seen Belinda at the conference and you would understand

and see isn't alone. Belinda did such great jobs at speaking, twice, but

it took so much out of her she was just exhausted. She should have been, she

gave it her all!

It's a gift.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

yes any ideas on what i can do with my self would be great ellen you fun

friend xxxxxxxxx

>

> OK guys, I have tons to say!!!

>

> The most important is Martha, I totally understand what you are saying and

> is

> why Patty is now home. She's here again with nothing to do and nowhere to

> go. It was a huge decision but it was one we decided with her. Now we

> absolutely know it was the right one.

>

> Now, as a board member here, there are things the CHARGE Syndrome

> Foundation

> is moving forward to the future with. It is really an exciting time and

> the

> future has the potential to be even brighter. But it is one that we as

> board

> members just can't and won't think of doing without the families. That

> includes fundraising, etc. Also because of the exhausting weekend meeting

> where we

> all worked together there came about a few new committees. Guess what one

> of

> them is! Adults who have CHARGE Syndrome. You'll never guess who is the

> leader

> of that committee! Yup, me! I am more than honored.

>

> Martha, we so have to talk. That goes for all the adults who have CHARGE

> and

> their families!

>

> I just got back from a weekend in New Hampshire with tons of rain! We go

> at

> this time every year in memory of my fathers birthday, and to de-stress.

> It

> didn't work. I have to get my thoughts together before I go on.

>

> Just know-Martha I am with you on all of this.

>

> And about the sleep, yes Patty sleeps tons now. As a matter of fact if she

> doesn't sleep by a specific time she is on edge and isn't healthy. She now

> goes to bed around 8 or 9 pm. She gets up around 6 but it does her good.

> When

> she is menstruating she sleeps more. There have even been a few times she

> even

> takes naps. That just isn't her.

>

> Is there depression? Yea probably but sometimes I think if I were Patty I

> would be more than depressed and she's not. She is so positive about her

> future

> and she makes her days count even when they stink! I also think there are

> unique pressures on our children. They just feel them deeper than the

> rest. I

> wish you could have seen Belinda at the conference and you would

> understand

> and see isn't alone. Belinda did such great jobs at speaking, twice,

> but

> it took so much out of her she was just exhausted. She should have been,

> she

> gave it her all!

>

> It's a gift.

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>