Re: Chat: Jodi

[Guest guest]

Jodi ... I needed to respond to this ... it is awesome that you had

such a great day! Those hugs and moments with our kids are the

best. You deserve them ... you are one of the most helpful people

on here! Thanks

Dawna

>

> Sheldon,

>

> I did NOT forget that you asked us to post something GOOD today.

In

> fact, I had such a good day that I'm not sure where to begin.

>

> Okay, I'll start with Max. He made it through his FIRST FULL DAY

OF

> SCHOOL today!!!! He did call me at 11:30 and was hiccuping. He

> really wanted to go home. I told him to stay at school, have

lunch,

> go to at least two more classes and then we would talk. I did not

> hear from him until the end of the day. He text messaged me to

tell

> me that he was so proud of himself. When I called him to

> congratulate him, he said, " Mom, I am all done with these hiccups.

> They are gone forever. I'm going to school all day from now on.

> These hiccups are done! " Music to my ears.

>

> Jenna: You are aware of some of the struggles we have faced with

> her. She has been angry and combative at times, but we have just

> taken it and let her have her space. Today something happened at

> work and she called me and asked me to come over. She could not

> tell me in detail at the time, but she did say that she needed a

> hug. She held me for the longest time. Oh, it felt so good! She

> told me that she loves me and that she is so glad I came over.

More

> music.

>

> Those are the two things that I am so thankful for and will

> appreciate for a long, long time. Add my husband who has been

> particularly helpful today and it's just been great. Now I can go

> to sleep happy and relaxed. That's new for me!

>

> Jodi Z

>

[Guest guest]

Jodi/Dawna/Sheldon - I'm barging in here - but, I agree with Dawna.

She couldn't have said it better! It makes me more relieved

to " hear " the happiness in your voice Jodi. I pray for many more of

those days for you.

Hugs

- H

> >

> > Sheldon,

> >

> > I did NOT forget that you asked us to post something GOOD

today.

> In

> > fact, I had such a good day that I'm not sure where to begin.

> >

> > Okay, I'll start with Max. He made it through his FIRST FULL

DAY

> OF

> > SCHOOL today!!!! He did call me at 11:30 and was hiccuping. He

> > really wanted to go home. I told him to stay at school, have

> lunch,

> > go to at least two more classes and then we would talk. I did

not

> > hear from him until the end of the day. He text messaged me to

> tell

> > me that he was so proud of himself. When I called him to

> > congratulate him, he said, " Mom, I am all done with these

hiccups.

> > They are gone forever. I'm going to school all day from now

on.

> > These hiccups are done! " Music to my ears.

> >

> > Jenna: You are aware of some of the struggles we have faced

with

> > her. She has been angry and combative at times, but we have

just

> > taken it and let her have her space. Today something happened

at

> > work and she called me and asked me to come over. She could not

> > tell me in detail at the time, but she did say that she needed a

> > hug. She held me for the longest time. Oh, it felt so good!

She

> > told me that she loves me and that she is so glad I came over.

> More

> > music.

> >

> > Those are the two things that I am so thankful for and will

> > appreciate for a long, long time. Add my husband who has been

> > particularly helpful today and it's just been great. Now I can

go

> > to sleep happy and relaxed. That's new for me!

> >

> > Jodi Z

> >

>

[Guest guest]

Jodi, you have an amazing way with words - bringing out the essence

of what you are dealing with, but doing it with class & without

bitterness. I love the way you described " mourning that life you

wanted your child to have " and all the feelings that go along with

it. That same realistic yet upbeat attitude will get you through the

coming changes just as it has in the past! When I read

Jeanie's " Reality " post I had a de-ja vu feeling and realized it was

so much like what you wrote back in the early days - the ACRSS

days. You are an amazing, strong & supportive person who has blazed

a trail for so many, and I am encouraged to see how others are able

to learn, share and be supported. You & Max have come so far, and

will make it & have fine lives, and so will those who are following

you in their journey. We *are* all in this together!

I wish I could give you more help in navigating the transitional

system. It stinks that it varies so much, not only from state to

state, but some things vary depending on what is available in your

specific area within your state. I believe that Charissa has a few

more behavioral issues than Max, and I am still fighting to get her

services from the state (Medicaid waiver). Charissa looks

so " normal " on paper with her average IQ, but the immature behavior

doesn't match the official testing results. She doesn't fit neatly

into any one diagnosis (*almost* PDD, many but not enough symptoms

of (fill in the blank), *almost* alot of things....) but all these

issues put together make one complex person definately needing some

support services. I spent weeks putting together a 3rd appeal of

denial of services, and it ended up being 4 pages, single spaced, 36

paragraphs with 22 pages of supporting documents - I think I have

earned at least a Masters degree in " one-of-a-kind " by now! This

appeal finally got their attention, and they decided that Charissa

must be " unique " enough to warrant a " face to face " observation at

her transitioning program. That visit was yesterday, and from the

report I received from the school, I think it was eye-opening for

the people from the state. So hopefully we will receive our

acceptance letter within the next few weeks........and I can start

all over again, applying for SSI for her!

The best advice for you & Debby, and anyone with an " older " child:

1 - Keep on documenting the amount of support & issues your child

has. For this last appeal I pulled information from a 7 year old

IEP to document issues that still remain. My husband thinks the

therapy Charissa has been receiving has been a waste of time and

money - he doesn't see it is helping her much. But it helps ME to

talk to the professionals about her & get their input, it documents

the issues, and when I needed someone to write letters to support

the need of services, those people have previous and recent contact

and experience with Charissa.

2- Start early gathering information on the transitioning services

available. It is a whole new world and takes some time to learn how

to navigate.

3- Begin networking with other parents in your area who may have

already gone through the process to pick up pointers on their

experiences. I went to a parent support group, partially sponsored

by the ARC, for several years. Most, if not all, of the other

people involved in the group had children with more severe issues

than Charissa, but it gave me alot of info about what is available

and where to start. It helped me understand navigating the local

system, and the timeline involved in obtaining services.

in Alaska

>

> Jodi

> Thanks for sharing that personal glimpse into yourself. I think we

sometimes forget to see the big picture when we are dealing so much

with the day to day. I know very well all your hardships with Max

and his health recently and over the past few years, but I had never

stopped to think about the year or two down the road that you are

very much mulling over in your mind.

> I hear you when you say you wish you were not always the " first " .

I can't compare it to anything personally but I can only imagine

your sadness over it. Even now, your taking the time on your lunch

hour to share that has given me pause for thought. I am in the

process of beginning to set up Adam's high school placement. And

while the meetings and forms have not started yet, I am very much

aware that this time next year he's going to be all grown up and off

on his own (as he likes to remind me every 5 minutes!).

> But by your just taking the time to write where you are at right

now, in the big picture so to speak, you have graciously given me

the opportunity to think about that as well. So that when I do start

these meetings and filling out of forms, I will be wary to give

the " future " (as scary as that may be) a thought or two and try to

work that into my planning (and worrying!!) now as well.

> I just wish you had a peer or two with children comparable to

Max's age, but I guess there always has to be 'the first'.

>

> Thanks for continuing to give a bit of yourself for all of us to

benefit from.

> Deb

>

> Chat: Jeanie

>

>

> Jeanie,

>

> I have a few minutes before my students return from lunch. Deb

said

> something that has sparked a thought I am living with on a

daily basis and I

> thought you'd like to hear about it. It is in reference to that

mourning that life

> you wanted your child to have....

>

> Even now, after over 17 years of living with RSS and its effects

on my son, I go

> through those periods of mourning, anger, denial, frustration,

etc. I'm dealing

> with them as I type. But what I have learned to do is to deal

with them in a

> healthier way than in previous years. Is the pain any less?

No. But handling

> it in a way that does not ruin my life has been a lesson I've

had to learn. And

> you will, too. We all will and do.

>

> Max is going to graduate from high school in 2007. That is not

far away. We

> already know he will not be ready or even able to go to college,

so we have to

> investigate options for him. And therein lies the problem.

While he has been

> in school, he has been under the protective umbrella of an IEP

and a child

> study team. All of a sudden he is going to graduate and the

umbrella falls

> away and we are left out in the rain. No one has the advice to

give us

> anymore. All we have is the Division of Vocational Rehab that

Max's case

> manager told us about and who will send a rep to his next IEP

meeting. But

> even so, we are not sure of exactly what they will do. Max is

not

> developmentally delayed like those who pack groceries in the

supermarket or

> clean the tables and Mc's. He is very high functioning.

Then again, he

> has health and emotional issues that will probably keep him from

being able

> to maintain a full-time job .

>

> Then there is health insurance. Once he graduates, unless he is

a fulltime

> student, he may not be covered by our policy anymore. There may

be a

> clause in there that will cover him until he is 21 because of

his issues, but no

> one has given us an answer yet.

>

> Who do I turn to? Where do I go? I spend hours on the internet

and talking to

> other parents of older children. Do we have Max apply for SSI?

Does he get

> Medicaid? Do we have to apply for guardianship? It's not easy,

but we will

> muddle through.

>

> I'm only telling you this because, as I said, and Deb pointed

out, we go

> through these phases. But we will all help you and you will

learn to do what

> you have to do. It sure isn't easy, but we are all in this

together, thank

> goodness. I just wish there were more at my stage and Max's

stage. It's hard

> to always be the first one.

>

> Jodi Z

>

>

>

>

[Guest guest]

- thank you for sharing that information. Hope you don't

mind - I've copied it for " future use " . You certainly deserve a

masters!

- H

-- In RSS-Support , " ischool24now " <rush4ak@y...>

wrote:

>

> Jodi, you have an amazing way with words - bringing out the

essence

> of what you are dealing with, but doing it with class & without

> bitterness. I love the way you described " mourning that life you

> wanted your child to have " and all the feelings that go along with

> it. That same realistic yet upbeat attitude will get you through

the

> coming changes just as it has in the past! When I read

> Jeanie's " Reality " post I had a de-ja vu feeling and realized it

was

> so much like what you wrote back in the early days - the ACRSS

> days. You are an amazing, strong & supportive person who has

blazed

> a trail for so many, and I am encouraged to see how others are

able

> to learn, share and be supported. You & Max have come so far, and

> will make it & have fine lives, and so will those who are

following

> you in their journey. We *are* all in this together!

>

> I wish I could give you more help in navigating the transitional

> system. It stinks that it varies so much, not only from state to

> state, but some things vary depending on what is available in your

> specific area within your state. I believe that Charissa has a

few

> more behavioral issues than Max, and I am still fighting to get

her

> services from the state (Medicaid waiver). Charissa looks

> so " normal " on paper with her average IQ, but the immature

behavior

> doesn't match the official testing results. She doesn't fit

neatly

> into any one diagnosis (*almost* PDD, many but not enough symptoms

> of (fill in the blank), *almost* alot of things....) but all these

> issues put together make one complex person definately needing

some

> support services. I spent weeks putting together a 3rd appeal of

> denial of services, and it ended up being 4 pages, single spaced,

36

> paragraphs with 22 pages of supporting documents - I think I have

> earned at least a Masters degree in " one-of-a-kind " by now! This

> appeal finally got their attention, and they decided that Charissa

> must be " unique " enough to warrant a " face to face " observation at

> her transitioning program. That visit was yesterday, and from the

> report I received from the school, I think it was eye-opening for

> the people from the state. So hopefully we will receive our

> acceptance letter within the next few weeks........and I can start

> all over again, applying for SSI for her!

>

> The best advice for you & Debby, and anyone with an " older "

child:

> 1 - Keep on documenting the amount of support & issues your child

> has. For this last appeal I pulled information from a 7 year old

> IEP to document issues that still remain. My husband thinks the

> therapy Charissa has been receiving has been a waste of time and

> money - he doesn't see it is helping her much. But it helps ME to

> talk to the professionals about her & get their input, it

documents

> the issues, and when I needed someone to write letters to support

> the need of services, those people have previous and recent

contact

> and experience with Charissa.

> 2- Start early gathering information on the transitioning services

> available. It is a whole new world and takes some time to learn

how

> to navigate.

> 3- Begin networking with other parents in your area who may have

> already gone through the process to pick up pointers on their

> experiences. I went to a parent support group, partially

sponsored

> by the ARC, for several years. Most, if not all, of the other

> people involved in the group had children with more severe issues

> than Charissa, but it gave me alot of info about what is available

> and where to start. It helped me understand navigating the local

> system, and the timeline involved in obtaining services.

>

> in Alaska

>

>

> >

> > Jodi

> > Thanks for sharing that personal glimpse into yourself. I think

we

> sometimes forget to see the big picture when we are dealing so

much

> with the day to day. I know very well all your hardships with Max

> and his health recently and over the past few years, but I had

never

> stopped to think about the year or two down the road that you are

> very much mulling over in your mind.

> > I hear you when you say you wish you were not always

the " first " .

> I can't compare it to anything personally but I can only imagine

> your sadness over it. Even now, your taking the time on your lunch

> hour to share that has given me pause for thought. I am in the

> process of beginning to set up Adam's high school placement. And

> while the meetings and forms have not started yet, I am very much

> aware that this time next year he's going to be all grown up and

off

> on his own (as he likes to remind me every 5 minutes!).

> > But by your just taking the time to write where you are at right

> now, in the big picture so to speak, you have graciously given me

> the opportunity to think about that as well. So that when I do

start

> these meetings and filling out of forms, I will be wary to give

> the " future " (as scary as that may be) a thought or two and try to

> work that into my planning (and worrying!!) now as well.

> > I just wish you had a peer or two with children comparable to

> Max's age, but I guess there always has to be 'the first'.

> >

> > Thanks for continuing to give a bit of yourself for all of us to

> benefit from.

> > Deb

> >

> > Chat: Jeanie

> >

> >

> > Jeanie,

> >

> > I have a few minutes before my students return from lunch.

Deb

> said

> > something that has sparked a thought I am living with on a

> daily basis and I

> > thought you'd like to hear about it. It is in reference to

that

> mourning that life

> > you wanted your child to have....

> >

> > Even now, after over 17 years of living with RSS and its

effects

> on my son, I go

> > through those periods of mourning, anger, denial, frustration,

> etc. I'm dealing

> > with them as I type. But what I have learned to do is to deal

> with them in a

> > healthier way than in previous years. Is the pain any less?

> No. But handling

> > it in a way that does not ruin my life has been a lesson I've

> had to learn. And

> > you will, too. We all will and do.

> >

> > Max is going to graduate from high school in 2007. That is

not

> far away. We

> > already know he will not be ready or even able to go to

college,

> so we have to

> > investigate options for him. And therein lies the problem.

> While he has been

> > in school, he has been under the protective umbrella of an IEP

> and a child

> > study team. All of a sudden he is going to graduate and the

> umbrella falls

> > away and we are left out in the rain. No one has the advice

to

> give us

> > anymore. All we have is the Division of Vocational Rehab that

> Max's case

> > manager told us about and who will send a rep to his next IEP

> meeting. But

> > even so, we are not sure of exactly what they will do. Max is

> not

> > developmentally delayed like those who pack groceries in the

> supermarket or

> > clean the tables and Mc's. He is very high

functioning.

> Then again, he

> > has health and emotional issues that will probably keep him

from

> being able

> > to maintain a full-time job .

> >

> > Then there is health insurance. Once he graduates, unless he

is

> a fulltime

> > student, he may not be covered by our policy anymore. There

may

> be a

> > clause in there that will cover him until he is 21 because of

> his issues, but no

> > one has given us an answer yet.

> >

> > Who do I turn to? Where do I go? I spend hours on the

internet

> and talking to

> > other parents of older children. Do we have Max apply for

SSI?

> Does he get

> > Medicaid? Do we have to apply for guardianship? It's not

easy,

> but we will

> > muddle through.

> >

> > I'm only telling you this because, as I said, and Deb pointed

> out, we go

> > through these phases. But we will all help you and you will

> learn to do what

> > you have to do. It sure isn't easy, but we are all in this

> together, thank

> > goodness. I just wish there were more at my stage and Max's

> stage. It's hard

> > to always be the first one.

> >

> > Jodi Z

> >

> >

> >

> >

>

[Guest guest]

Thanks, Deb. That is exactly why I share my personal stories.

Jodi Z

[Guest guest]

I think Jodi has....Or at least I'd like to think so.

ne

> I just wish you had a peer or two with children comparable to

Max's age, but I guess there always has to be 'the first'.

>

> Thanks for continuing to give a bit of yourself for all of us to

benefit from.

> Deb

> b..