Re: Life after school district battles

[Guest guest]

I love hearing Elie stories!!!!!! And you've been such a great role model

for us all Sara. You demonstrate for us how to be brave.

Hugs,

Donna

> I am so very happy not to have to deal with a school district anymore.

> Altho, our last year of school here in rural Georgia was a piece of cake.

> Wonderful public high school, fantastic teacher and para's and everyone from

> the principal to the ladies in the cafeteria - warm and welcoming./

>

> Now we deal with the adult system./ It was a constant , unrelenting paper

> chase to get Elie in the 'system' for waiver. But do-able. Just constant

> filling out of papers. Once done, we just have the annual reviews - 2-4

> hours of constant attention to every detail for the coming budget year.

> Since we are working Elie's Medicaid Waiver under self determination, we

> have no dealings with an agency or their picayune political garbage. We do

> have a support coordinator who has become such a good friend to all of us we

> hope he long outlives us!

>

> The pluses are: Elie is happy, growing into a great young man whom everyone

> who has dealings with says he is well behaved, polite, and feeling a sense

> of worth.

>

> I feel for all of you still struggling with school. Those who find it

> terribly overwhelming and think to move - think carefully of what you leave

> behind when you do. And research, ask questions, make phone calls, check on

> line, use parent network email lists (seems like every state has one).

> Check out yahoogroups and search for where you think to move - ask ask

> ask!!!

>

> We thought long and hard before moving to Georgia. We weighed the costs of

> living, leaving the supportive MH/MR community where we were known, leaving

> Elie's special school for the unknown public school, and finally our stress

> level. Medical wasn't an issue as Elie has no real medical issues. But we

> did have to consider medical for my dh. And transport to the 'city' of

> Atlanta (we go there so rarely that we feel like wagon trailers when we

> go)where there is very specialized medical care. And we heard how Georgia

> gives nothing to people with DD.

>

> Well we were to find we were wrong as far as state support. IT is there -

> one just has to advocate for it. And yes - we too have a Waiting list for

> services - but we new comers were able to get services . I have to believe

> advocacy makes the difference. And schools CAN provide services . What I am

> seeing is that services are perhaps better out of the central city areas.

>

> Leaving the city for very rural Georiga (30,000 people in the whole county)

> - what a change - for us welcome change. We moved so that Elie could no

> longer get lost in a city (the last year 3 times!!!!) We used geographic

> margine building so that Elie would not choose to wander. (Bottom of a steep

> ridge, woodds surrounding, cul de sac with understanding neighbors) Elie

> will not walk on uneven ground (woods!) nor climb hills and our road is very

> steep. We have 5 houses on the flat part of our cul de sac - he visted each

> house once and then never again. And we were able to fence the whole

> surround of the house (about 1/4 acre) of the property. We moved knowing

> that there was CSB which would have $2500 for family support available. We

> had talked to the school - but had not met anyone. Then we got here to find

> that teachers had changed and we were so very fortunate! Even the principal

> changed from MArch to May when we moved! Again a huge plus.

>

>

>

> > Yep Sara.....definitely not where you'd want to live....LOL It's city

> > living. But there really are areas in Philly that are extremely spacious,

> > gorgeous and downright equivalent to country living. But yep, the cost

> > factor. We live in a diverse neighborhood in an almost 100 year old stone

> > house. I grew up 2 blocks away and so long as we are getting Maddie's

> > needs met here, we will stay (even though we are currently empty-nesters in

> > a six bedroom home). We love our beautiful house, our wonderful neighbors

> > and tolerate some of the blight on our periphery inherent in city living.

> > But go 5 miles west and it's a danger zone. That is typical of city

> > living. The inch that you leave the city, you pay more (not talking

> > about downtown obviously, where it's VERY expensive). I realize that

> > services vary county to county, but my experience is that going to the wall

> > seems to be a necessary factor for success no matter where you live.

> > Maddie is getting what she needs now, and has in the past, but honestly

> > never without a fight.

> > Donna

> >

> >

> >

> >

> > > i forgot about Lancaster because there are no schools there - but active

> > > group home groups some started by parents.

> > >

> > > There is also the cost of housing. Chester County has some affordable

> > towns

> > > - and schools more amenable to sending a child to an APS> But Montgomery

> > is

> > > high and so is Delaware. PArts of Philly are inexpensive - as Donna can

> > > tell you - but not necessarily where you want to live. Montgomery gets

> > less

> > > expensive the more rural you become but then distances become a factor.

> > >

> > > Sometimes you just have to take a leap of faith.

> > >

> > > Which is what we did to no service GA - and then lucked out and got

> > > everything we need for Elie.

> > >

> > >

> > >

> > > > **

> > > >

> > > >

> > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There is

> > very

> > > > few houses here for spec needs residential housing. All the extra

> > housing

> > > > in town goes for student housing where they can rake in the most money.

> > > > Lancaster county had many homes through different organizations. Had I

> > > > known this (hindsight is 20/20 !!!) I would have rented here the two

> > years

> > > > Gareth went through the Lifelink program, and then, moved back. I keep

> > > > telling

> > > > myself that Gareth wouldn't do well in a home because he's always so

> > > > sickly and wants Mom with him when he's so down. Don't get me wrong, I

> > do

> > > > enjoy

> > > > living here but have come to realize that Gareth will be with us until

> > it's

> > > >

> > > > an *Emergency placement*....basically, meaning me and Ter die and he's

> > > > alone!!! Of course, my kid sister would be here in two seconds and take

> > him

> > > >

> > > > to live with her!!!

> > > >

> > > > As for Gareth's ear....his ENT and PCP don't want to do the IV

> > antibiotics

> > > > (yet) because they don't want to risk making matters worse.....meaning

> > him

> > > > becoming resistant to antibiotics due to his immune deficiencies. I

> > have

> > > > told them I will not go through with the surgery until that option has

> > been

> > > >

> > > > tried and they understand. He has an appt with the 1st Immunologist

> > this

> > > > Friday....the guy who went us to HMC. I will ask him about pushing

> > through

> > > > the IV Ig infusions since he and the guy at HMC agree that Gareth's a

> > prime

> > > >

> > > > candidate for them. The ENT said that would definitely help his ear

> > > > infection.

> > > >

> > > > Take care, Everyone.

> > > > Margaret

> > > >

> > > >

[Guest guest]

Donna - it was you and your family who gave me the idea to look for an APS

- and to move to Chester County to get to one. I never would have thought a

s/d would pay for that. 5 years of a better environment helped Elie

enormously.

BTW _ there was nothing liek that when we were in Dauphin County, PA which

is where the wonderful HErshey MEdical Center is. We left our jobs in

Hershey and decided to chose school and trave to Hershey.

> I love hearing Elie stories!!!!!! And you've been such a great role

> model for us all Sara. You demonstrate for us how to be brave.

> Hugs,

> Donna

>

>

>

>

> > I am so very happy not to have to deal with a school district anymore.

> > Altho, our last year of school here in rural Georgia was a piece of cake.

> > Wonderful public high school, fantastic teacher and para's and everyone

> from

> > the principal to the ladies in the cafeteria - warm and welcoming./

> >

> > Now we deal with the adult system./ It was a constant , unrelenting paper

> > chase to get Elie in the 'system' for waiver. But do-able. Just constant

> > filling out of papers. Once done, we just have the annual reviews - 2-4

> > hours of constant attention to every detail for the coming budget year.

> > Since we are working Elie's Medicaid Waiver under self determination, we

> > have no dealings with an agency or their picayune political garbage. We

> do

> > have a support coordinator who has become such a good friend to all of us

> we

> > hope he long outlives us!

> >

> > The pluses are: Elie is happy, growing into a great young man whom

> everyone

> > who has dealings with says he is well behaved, polite, and feeling a

> sense

> > of worth.

> >

> > I feel for all of you still struggling with school. Those who find it

> > terribly overwhelming and think to move - think carefully of what you

> leave

> > behind when you do. And research, ask questions, make phone calls, check

> on

> > line, use parent network email lists (seems like every state has one).

> > Check out yahoogroups and search for where you think to move - ask ask

> > ask!!!

> >

> > We thought long and hard before moving to Georgia. We weighed the costs

> of

> > living, leaving the supportive MH/MR community where we were known,

> leaving

> > Elie's special school for the unknown public school, and finally our

> stress

> > level. Medical wasn't an issue as Elie has no real medical issues. But we

> > did have to consider medical for my dh. And transport to the 'city' of

> > Atlanta (we go there so rarely that we feel like wagon trailers when we

> > go)where there is very specialized medical care. And we heard how Georgia

> > gives nothing to people with DD.

> >

> > Well we were to find we were wrong as far as state support. IT is there -

> > one just has to advocate for it. And yes - we too have a Waiting list for

> > services - but we new comers were able to get services . I have to

> believe

> > advocacy makes the difference. And schools CAN provide services . What I

> am

> > seeing is that services are perhaps better out of the central city areas.

> >

> > Leaving the city for very rural Georiga (30,000 people in the whole

> county)

> > - what a change - for us welcome change. We moved so that Elie could no

> > longer get lost in a city (the last year 3 times!!!!) We used geographic

> > margine building so that Elie would not choose to wander. (Bottom of a

> steep

> > ridge, woodds surrounding, cul de sac with understanding neighbors) Elie

> > will not walk on uneven ground (woods!) nor climb hills and our road is

> very

> > steep. We have 5 houses on the flat part of our cul de sac - he visted

> each

> > house once and then never again. And we were able to fence the whole

> > surround of the house (about 1/4 acre) of the property. We moved knowing

> > that there was CSB which would have $2500 for family support available.

> We

> > had talked to the school - but had not met anyone. Then we got here to

> find

> > that teachers had changed and we were so very fortunate! Even the

> principal

> > changed from MArch to May when we moved! Again a huge plus.

> >

> >

> >

> > > Yep Sara.....definitely not where you'd want to live....LOL It's city

> > > living. But there really are areas in Philly that are extremely

> spacious,

> > > gorgeous and downright equivalent to country living. But yep, the cost

> > > factor. We live in a diverse neighborhood in an almost 100 year old

> stone

> > > house. I grew up 2 blocks away and so long as we are getting Maddie's

> > > needs met here, we will stay (even though we are currently

> empty-nesters in

> > > a six bedroom home). We love our beautiful house, our wonderful

> neighbors

> > > and tolerate some of the blight on our periphery inherent in city

> living.

> > > But go 5 miles west and it's a danger zone. That is typical of city

> > > living. The inch that you leave the city, you pay more (not talking

> > > about downtown obviously, where it's VERY expensive). I realize that

> > > services vary county to county, but my experience is that going to the

> wall

> > > seems to be a necessary factor for success no matter where you live.

> > > Maddie is getting what she needs now, and has in the past, but honestly

> > > never without a fight.

> > > Donna

> > >

> > >

> > >

> > >

> > > > i forgot about Lancaster because there are no schools there - but

> active

> > > > group home groups some started by parents.

> > > >

> > > > There is also the cost of housing. Chester County has some affordable

> > > towns

> > > > - and schools more amenable to sending a child to an APS> But

> Montgomery

> > > is

> > > > high and so is Delaware. PArts of Philly are inexpensive - as Donna

> can

> > > > tell you - but not necessarily where you want to live. Montgomery

> gets

> > > less

> > > > expensive the more rural you become but then distances become a

> factor.

> > > >

> > > > Sometimes you just have to take a leap of faith.

> > > >

> > > > Which is what we did to no service GA - and then lucked out and got

> > > > everything we need for Elie.

> > > >

> > > >

> > > >

> > > > > **

> > > > >

> > > > >

> > > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There

> is

> > > very

> > > > > few houses here for spec needs residential housing. All the extra

> > > housing

> > > > > in town goes for student housing where they can rake in the most

> money.

> > > > > Lancaster county had many homes through different organizations.

> Had I

> > > > > known this (hindsight is 20/20 !!!) I would have rented here the

> two

> > > years

> > > > > Gareth went through the Lifelink program, and then, moved back. I

> keep

> > > > > telling

> > > > > myself that Gareth wouldn't do well in a home because he's always

> so

> > > > > sickly and wants Mom with him when he's so down. Don't get me

> wrong, I

> > > do

> > > > > enjoy

> > > > > living here but have come to realize that Gareth will be with us

> until

> > > it's

> > > > >

> > > > > an *Emergency placement*....basically, meaning me and Ter die and

> he's

> > > > > alone!!! Of course, my kid sister would be here in two seconds and

> take

> > > him

> > > > >

> > > > > to live with her!!!

> > > > >

> > > > > As for Gareth's ear....his ENT and PCP don't want to do the IV

> > > antibiotics

> > > > > (yet) because they don't want to risk making matters

> worse.....meaning

> > > him

> > > > > becoming resistant to antibiotics due to his immune deficiencies. I

> > > have

> > > > > told them I will not go through with the surgery until that option

> has

> > > been

> > > > >

> > > > > tried and they understand. He has an appt with the 1st Immunologist

> > > this

> > > > > Friday....the guy who went us to HMC. I will ask him about pushing

> > > through

> > > > > the IV Ig infusions since he and the guy at HMC agree that Gareth's

> a

> > > prime

> > > > >

> > > > > candidate for them. The ENT said that would definitely help his ear

> > > > > infection.

> > > > >

> > > > > Take care, Everyone.

> > > > > Margaret

> > > > >

> > > > >

[Guest guest]

Sara,

I also love reading Elie stories and can relate to no longer dealing with the

schools. I can honestly say that this September was the first time since Zeb

started public school that my stomach was not in knots. I can't tell you how

good that felt. I am not exactly finished with the district but I do not have to

deal with the daily stuff. Zeb never cared for school and I hated it. And to

think he is loving college. I don't think I would have had the nerve to think it

was possible if I didn't read about Elie's adult life. I am continually amazed

at his accomplishments.

Charlyne

> > >

> > > > **

> > > >

> > > >

> > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There is

> > very

> > > > few houses here for spec needs residential housing. All the extra

> > housing

> > > > in town goes for student housing where they can rake in the most money.

> > > > Lancaster county had many homes through different organizations. Had I

> > > > known this (hindsight is 20/20 !!!) I would have rented here the two

> > years

> > > > Gareth went through the Lifelink program, and then, moved back. I keep

> > > > telling

> > > > myself that Gareth wouldn't do well in a home because he's always so

> > > > sickly and wants Mom with him when he's so down. Don't get me wrong, I

> > do

> > > > enjoy

> > > > living here but have come to realize that Gareth will be with us until

> > it's

> > > >

> > > > an *Emergency placement*....basically, meaning me and Ter die and he's

> > > > alone!!! Of course, my kid sister would be here in two seconds and take

> > him

> > > >

> > > > to live with her!!!

> > > >

> > > > As for Gareth's ear....his ENT and PCP don't want to do the IV

> > antibiotics

> > > > (yet) because they don't want to risk making matters worse.....meaning

> > him

> > > > becoming resistant to antibiotics due to his immune deficiencies. I

> > have

> > > > told them I will not go through with the surgery until that option has

> > been

> > > >

> > > > tried and they understand. He has an appt with the 1st Immunologist

> > this

> > > > Friday....the guy who went us to HMC. I will ask him about pushing

> > through

> > > > the IV Ig infusions since he and the guy at HMC agree that Gareth's a

> > prime

> > > >

> > > > candidate for them. The ENT said that would definitely help his ear

> > > > infection.

> > > >

> > > > Take care, Everyone.

> > > > Margaret

> > > >

> > > >

[Guest guest]

Elie is home for the w/e. LAst nite was the first time since he was six

that he 'dressed' for a Halloween Party. He went as Bo - meaning he

wore a Bo JAckson Football shirt and allowed me to SHARPIE bblack lines

under his eyes.

He had fun until the flashing lites from cameras of all the friends in

costumes - then he went to his usual dark corner and sat.

But today he told me " Did you have fun at the party " . Noun, verb subject,

modifying phrase!

> **

>

>

> Sara,

> I also love reading Elie stories and can relate to no longer dealing with

> the schools. I can honestly say that this September was the first time since

> Zeb started public school that my stomach was not in knots. I can't tell you

> how good that felt. I am not exactly finished with the district but I do not

> have to deal with the daily stuff. Zeb never cared for school and I hated

> it. And to think he is loving college. I don't think I would have had the

> nerve to think it was possible if I didn't read about Elie's adult life. I

> am continually amazed at his accomplishments.

> Charlyne

>

>

> > > >

> > > > > **

> > > > >

> > > > >

> > > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There

> is

> > > very

> > > > > few houses here for spec needs residential housing. All the extra

> > > housing

> > > > > in town goes for student housing where they can rake in the most

> money.

> > > > > Lancaster county had many homes through different organizations.

> Had I

> > > > > known this (hindsight is 20/20 !!!) I would have rented here the

> two

> > > years

> > > > > Gareth went through the Lifelink program, and then, moved back. I

> keep

> > > > > telling

> > > > > myself that Gareth wouldn't do well in a home because he's always

> so

> > > > > sickly and wants Mom with him when he's so down. Don't get me

> wrong, I

> > > do

> > > > > enjoy

> > > > > living here but have come to realize that Gareth will be with us

> until

> > > it's

> > > > >

> > > > > an *Emergency placement*....basically, meaning me and Ter die and

> he's

> > > > > alone!!! Of course, my kid sister would be here in two seconds and

> take

> > > him

> > > > >

> > > > > to live with her!!!

> > > > >

> > > > > As for Gareth's ear....his ENT and PCP don't want to do the IV

> > > antibiotics

> > > > > (yet) because they don't want to risk making matters

> worse.....meaning

> > > him

> > > > > becoming resistant to antibiotics due to his immune deficiencies. I

> > > have

> > > > > told them I will not go through with the surgery until that option

> has

> > > been

> > > > >

> > > > > tried and they understand. He has an appt with the 1st Immunologist

> > > this

> > > > > Friday....the guy who went us to HMC. I will ask him about pushing

> > > through

> > > > > the IV Ig infusions since he and the guy at HMC agree that Gareth's

> a

> > > prime

> > > > >

> > > > > candidate for them. The ENT said that would definitely help his ear

> > > > > infection.

> > > > >

> > > > > Take care, Everyone.

> > > > > Margaret

> > > > >

> > > > >