Re: Residential Schools?

[Guest guest]

Amy, have you checked into sending him to the Kennedy Krieger schools? They are

way more involved as far as programming. It wouldn't be residential but you

might see improvement at home with more intensive school programming during the

day. Especially if you live in maryland. Just a thought.

We went through what you are feeling this past year with Jake when he hit

puberty. It lasted about 8 months and now things have leveled out again. It is

a roller coaster. There are some on this site who have their kids in programs

and it is a very hard decision. It is only one that each individual family can

make. I wish there were more schools for our kids. I wish there were more

options especially as they grow and get too large for us to handle.

Know, that you are not alone in feeling this way. It is not about how much you

love your child. Some times it is the very thing that you love them so much and

just want something better for them than what we can physically and emotionall

(when we are so tired we cannot function) give anymore.

You can get your school to provide that he goes to KKI, but you have to proof

that they are not giving him the education that he needs. That they are

failing. You have to do that pretty much at any of the programs anyway. At

least with that he would still be close. Just a thought.

Holly

Residential Schools?

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

Hello group,

In this area, I have had some experience.  My son, , 20, resides at

Devereux-Kanner Learning Center in West Chester, PA.  When he hit puberty,

everything went downhill.  He refused to go to school and missed a year and a

half.  His behavior was uncontrollable.  He became physical with me and was

basically non-compliant with anything.  He would go AWOL that I would have to

call the police to help me find him.  After his birth, I did some research in

schools for our children to be prepared for the future. His father and I visited

Devereux and was impressed with the campus, program and staff.  We made the

very difficult decision to take him there on October 12, 2007.  I cried the

whole way home.  Partly because I felt I was " deserting " him and partly out of

relief because I knew he would be safe and get the help and education he needed

for the future.

Finally, this Spring, we made the decision of trying to transition him home.

 The school had felt they met his needs and we felt he was ready.  In March,

we started bringing him home every other weekend.  Then we extended visits home

for longer periods.  We now have been having meetings to acquire TSS and BSC

services for him to return to York and attend the York Learning Center through

the LIU programs.  It appears he may be home for the holidays.  It has been a

long and complex journey, but I hope that it works for all of us.  I am excited

about him coming home, but also alittle apprehensive.   We have become

accustomed to being able to come and go as we please, but he is our child and

our responsibility.  At some point, after he is finished with school in two

years, we will begin looking at group homes.

Our (the group) lives are something that people do not understand unless you

live it.  They can say anything they want " I can imagine what you are going

through " ....... ha.ha.  They don't have a clue.  I have no regrets for being

blessed with .  I feel I have learned as much from him as I have tried to

teach him.  He also has alot of health problems and we have become very

familiar with Hershey Medical Center (the best!) and other doctors too numerous

to name.

Hang in there Amy.  Do some research for a place close to where you reside.

 Devereux is a two hour drive for us, but it is not far from the northern

border of Eastern land.  There are other schools around the Philadelphia

area also.  Some close to Devereux.  If you desire more information, like a

contact or telephone number there, I'd be glad to put you in touch.  Your MH/MR

caseworker should also be able to assist you.

, mother of DS/ASD/Epilepsy...... etc.

________________________________

To:

Sent: Tuesday, October 25, 2011 9:37 AM

Subject: Re: Residential Schools?

 

Amy, have you checked into sending him to the Kennedy Krieger schools? They are

way more involved as far as programming. It wouldn't be residential but you

might see improvement at home with more intensive school programming during the

day. Especially if you live in maryland. Just a thought.

We went through what you are feeling this past year with Jake when he hit

puberty. It lasted about 8 months and now things have leveled out again. It is

a roller coaster. There are some on this site who have their kids in programs

and it is a very hard decision. It is only one that each individual family can

make. I wish there were more schools for our kids. I wish there were more

options especially as they grow and get too large for us to handle.

Know, that you are not alone in feeling this way. It is not about how much you

love your child. Some times it is the very thing that you love them so much and

just want something better for them than what we can physically and emotionall

(when we are so tired we cannot function) give anymore.

You can get your school to provide that he goes to KKI, but you have to proof

that they are not giving him the education that he needs. That they are

failing. You have to do that pretty much at any of the programs anyway. At

least with that he would still be close. Just a thought.

Holly

Residential Schools?

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

Amy, I forgot to add about funding.  If you can prove the school district he

attends is not meeting his needs, they would have to pay the tuition for Quinn

to attend a school that can.  If he would go residential, our funding for

to stay on campus comes from CCBH (Community Care Behavior Health) which

I believe is nationwide.  Your MH/MR caseworker should be familiar with all

these organizations and if they aren't, ask for someone that does know about

these schools.  I am a very demanding advocate for .  I found out the

hard way that they don't just offer this stuff, you really have to stay on your

toes, do research and don't accept no for an answer.  Resources are out there,

WE just have to go after them for what is best for our kids AND us.  If you

don't take care of yourself, you can't take care of anybody else.

, son of

________________________________

To: " " < >

Sent: Tuesday, October 25, 2011 12:38 PM

Subject: Re: Residential Schools?

 

Hello group,

In this area, I have had some experience.  My son, , 20, resides at

Devereux-Kanner Learning Center in West Chester, PA.  When he hit puberty,

everything went downhill.  He refused to go to school and missed a year and a

half.  His behavior was uncontrollable.  He became physical with me and was

basically non-compliant with anything.  He would go AWOL that I would have to

call the police to help me find him.  After his birth, I did some research in

schools for our children to be prepared for the future. His father and I visited

Devereux and was impressed with the campus, program and staff.  We made the

very difficult decision to take him there on October 12, 2007.  I cried the

whole way home.  Partly because I felt I was " deserting " him and partly out of

relief because I knew he would be safe and get the help and education he needed

for the future.

Finally, this Spring, we made the decision of trying to transition him home.

 The school had felt they met his needs and we felt he was ready.  In March,

we started bringing him home every other weekend.  Then we extended visits home

for longer periods.  We now have been having meetings to acquire TSS and BSC

services for him to return to York and attend the York Learning Center through

the LIU programs.  It appears he may be home for the holidays.  It has been a

long and complex journey, but I hope that it works for all of us.  I am excited

about him coming home, but also alittle apprehensive.   We have become

accustomed to being able to come and go as we please, but he is our child and

our responsibility.  At some point, after he is finished with school in two

years, we will begin looking at group homes.

Our (the group) lives are something that people do not understand unless you

live it.  They can say anything they want " I can imagine what you are going

through " ....... ha.ha.  They don't have a clue.  I have no regrets for being

blessed with .  I feel I have learned as much from him as I have tried to

teach him.  He also has alot of health problems and we have become very

familiar with Hershey Medical Center (the best!) and other doctors too numerous

to name.

Hang in there Amy.  Do some research for a place close to where you reside.

 Devereux is a two hour drive for us, but it is not far from the northern

border of Eastern land.  There are other schools around the Philadelphia

area also.  Some close to Devereux.  If you desire more information, like a

contact or telephone number there, I'd be glad to put you in touch.  Your MH/MR

caseworker should also be able to assist you.

, mother of DS/ASD/Epilepsy...... etc.

________________________________

To:

Sent: Tuesday, October 25, 2011 9:37 AM

Subject: Re: Residential Schools?

 

Amy, have you checked into sending him to the Kennedy Krieger schools? They are

way more involved as far as programming. It wouldn't be residential but you

might see improvement at home with more intensive school programming during the

day. Especially if you live in maryland. Just a thought.

We went through what you are feeling this past year with Jake when he hit

puberty. It lasted about 8 months and now things have leveled out again. It is

a roller coaster. There are some on this site who have their kids in programs

and it is a very hard decision. It is only one that each individual family can

make. I wish there were more schools for our kids. I wish there were more

options especially as they grow and get too large for us to handle.

Know, that you are not alone in feeling this way. It is not about how much you

love your child. Some times it is the very thing that you love them so much and

just want something better for them than what we can physically and emotionall

(when we are so tired we cannot function) give anymore.

You can get your school to provide that he goes to KKI, but you have to proof

that they are not giving him the education that he needs. That they are

failing. You have to do that pretty much at any of the programs anyway. At

least with that he would still be close. Just a thought.

Holly

Residential Schools?

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

Hi ,

I think the main problem is I live in the wrong state. We don't even have a

caseworker! We did consider at one point moving to PA but it was just too

complicated, now I wish we had There seem to be a lot of good schools in

PA, but I wonder if MD would pay for them.

The thing is that I think Quinn needs more than just what they can give him

at school. He needs someone to teach him to / help him live at home. He

needs consistent potty training and eyes on him 24 hours. I just tried to

take him to the potty and I feel like I ran a marathon. He won't keep his

hands out of the toilet and he tore up the bathroom. I just don't have the

energy for that, maybe it is because I also have another son with Autism,

maybe it is because I have severe arthritis that makes me weak and

exhausted. Maybe I am just not strong enough

We got a referal to a Social Worker at KKI, but they never called for an

appointment. She just sent a list of places that provide respite, great and

how do I pay for that? Sigh...

Amy

_____

From: [mailto: ] On Behalf

Of michelle conaway

Sent: Tuesday, October 25, 2011 4:40 PM

To:

Subject: Re: Residential Schools?

Amy, I forgot to add about funding. If you can prove the school district he

attends is not meeting his needs, they would have to pay the tuition for

Quinn to attend a school that can. If he would go residential, our funding

for to stay on campus comes from CCBH (Community Care Behavior

Health) which I believe is nationwide. Your MH/MR caseworker should be

familiar with all these organizations and if they aren't, ask for someone

that does know about these schools. I am a very demanding advocate for

. I found out the hard way that they don't just offer this stuff, you

really have to stay on your toes, do research and don't accept no for an

answer. Resources are out there, WE just have to go after them for what is

best for our kids AND us. If you don't take care of yourself, you can't

take care of anybody else.

, son of

________________________________

From: michelle conaway <micks76hd@... <mailto:micks76hd%40yahoo.com> >

To: " <mailto:%40yahoogroups.com> "

< <mailto:%40yahoogroups.com> >

Sent: Tuesday, October 25, 2011 12:38 PM

Subject: Re: Residential Schools?

Hello group,

In this area, I have had some experience. My son, , 20, resides at

Devereux-Kanner Learning Center in West Chester, PA. When he hit puberty,

everything went downhill. He refused to go to school and missed a year and

a half. His behavior was uncontrollable. He became physical with me and

was basically non-compliant with anything. He would go AWOL that I would

have to call the police to help me find him. After his birth, I did some

research in schools for our children to be prepared for the future. His

father and I visited Devereux and was impressed with the campus, program and

staff. We made the very difficult decision to take him there on October 12,

2007. I cried the whole way home. Partly because I felt I was " deserting "

him and partly out of relief because I knew he would be safe and get the

help and education he needed for the future.

Finally, this Spring, we made the decision of trying to transition him home.

The school had felt they met his needs and we felt he was ready. In March,

we started bringing him home every other weekend. Then we extended visits

home for longer periods. We now have been having meetings to acquire TSS

and BSC services for him to return to York and attend the York Learning

Center through the LIU programs. It appears he may be home for the

holidays. It has been a long and complex journey, but I hope that it works

for all of us. I am excited about him coming home, but also alittle

apprehensive. We have become accustomed to being able to come and go as we

please, but he is our child and our responsibility. At some point, after he

is finished with school in two years, we will begin looking at group homes.

Our (the group) lives are something that people do not understand unless you

live it. They can say anything they want " I can imagine what you are going

through " ....... ha.ha. They don't have a clue. I have no regrets for being

blessed with . I feel I have learned as much from him as I have tried

to teach him. He also has alot of health problems and we have become very

familiar with Hershey Medical Center (the best!) and other doctors too

numerous to name.

Hang in there Amy. Do some research for a place close to where you reside.

Devereux is a two hour drive for us, but it is not far from the northern

border of Eastern land. There are other schools around the Philadelphia

area also. Some close to Devereux. If you desire more information, like a

contact or telephone number there, I'd be glad to put you in touch. Your

MH/MR caseworker should also be able to assist you.

, mother of DS/ASD/Epilepsy...... etc.

________________________________

From: Holly <hdgiglio@... <mailto:hdgiglio%40gmail.com> >

To: <mailto:%40yahoogroups.com>

Sent: Tuesday, October 25, 2011 9:37 AM

Subject: Re: Residential Schools?

Amy, have you checked into sending him to the Kennedy Krieger schools? They

are way more involved as far as programming. It wouldn't be residential but

you might see improvement at home with more intensive school programming

during the day. Especially if you live in maryland. Just a thought.

We went through what you are feeling this past year with Jake when he hit

puberty. It lasted about 8 months and now things have leveled out again. It

is a roller coaster. There are some on this site who have their kids in

programs and it is a very hard decision. It is only one that each individual

family can make. I wish there were more schools for our kids. I wish there

were more options especially as they grow and get too large for us to

handle.

Know, that you are not alone in feeling this way. It is not about how much

you love your child. Some times it is the very thing that you love them so

much and just want something better for them than what we can physically and

emotionall (when we are so tired we cannot function) give anymore.

You can get your school to provide that he goes to KKI, but you have to

proof that they are not giving him the education that he needs. That they

are failing. You have to do that pretty much at any of the programs anyway.

At least with that he would still be close. Just a thought.

Holly

Residential Schools?

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

Amy,

Call the KKI Autism clinic or the Down Syndrome clinic and see if they can help

you. Tell them you dont want a social worker, you want someone who can help you

find out how to get him into a school setting like they have at KKI. Schedule a

tour of their school and get more information. The schools will tell you who to

talk to and how to get in. They are usually the most help if you go directly to

the school you want. land does not have the best as far as public school

settings but there is funding when you child is NOT getting what they need. You

just have to find it and they dont make it easy to find. Since KKI is near you

and the have both types of clinics I would start there. We did move to PA for

the very reasons you speak of when we were moving to that area. Even though my

husband worked in Hunt Valley. It was better for us to live in PA for Jake. We

knew that going in. Maybe there are others on this site from land that can

help point you in the right direction also?

holly

Residential Schools?

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

Hi Amy,

How old is Quinn and what part of MD do you live in?  I believe that it would

not matter if you put him in school in another state, the district would still

have to pay for it.  They are responsible for his education until he is 21

years of age no matter what.  If they cannot accommodate him at school, they

have to meet his needs somewhere else.  It falls under the " No Child left

Behind " .  You sound like you are overwhelmed, and that being said, you need

some help.  Do you not have a Mental Health/Mental Retardation Office in your

county?  If not, locate the closest one to you and don't give up until you get

help.  Sometimes I would call EVERYDAY, several TIMES A DAY.  So they knew I

meant business.  And if nobody called me back, I would end up going to the

office and sitting until someone saw me.  Some people and places hated even

hearing my name let alone seeing me come.  You just can't back down and give

up.  It's hard being a parent to

these kids sometimes, but if we do not advocate for them, they can't do it for

themselves.   has a pretty full life after alot of rollercoaster rides,

but he has alot to deal with yet in the future.  Our next big step after he

returns home will be for him transitioning to his new school for the next two

years.  After that, we hope we can attain a job coach and find some type of

employment for him either at a workshop or in the public.   needs

constant prompting to stay on task and he is a 24/7 job.

I agree, we get tired and just want to throw in the towel, but we can't.  This

is a good support group to find out info and vent.  Use it to your advantage.

 I don't post often, but when I have some input on something I know about, I

chime in.  Luckily, York also has a Down Syndrome Association group we belong

to.  All ages are welcome and they do all kinds of activities.   also

has been involved in the Special Olympics which was beneficial.  Just keep

looking for things to help YOU and Quinn.

________________________________

To:

Sent: Tuesday, October 25, 2011 4:58 PM

Subject: RE: Residential Schools?

 

Hi ,

I think the main problem is I live in the wrong state. We don't even have a

caseworker! We did consider at one point moving to PA but it was just too

complicated, now I wish we had There seem to be a lot of good schools in

PA, but I wonder if MD would pay for them.

The thing is that I think Quinn needs more than just what they can give him

at school. He needs someone to teach him to / help him live at home. He

needs consistent potty training and eyes on him 24 hours. I just tried to

take him to the potty and I feel like I ran a marathon. He won't keep his

hands out of the toilet and he tore up the bathroom. I just don't have the

energy for that, maybe it is because I also have another son with Autism,

maybe it is because I have severe arthritis that makes me weak and

exhausted. Maybe I am just not strong enough

We got a referal to a Social Worker at KKI, but they never called for an

appointment. She just sent a list of places that provide respite, great and

how do I pay for that? Sigh...

Amy

_____

From: [mailto: ] On Behalf

Of michelle conaway

Sent: Tuesday, October 25, 2011 4:40 PM

To:

Subject: Re: Residential Schools?

Amy, I forgot to add about funding. If you can prove the school district he

attends is not meeting his needs, they would have to pay the tuition for

Quinn to attend a school that can. If he would go residential, our funding

for to stay on campus comes from CCBH (Community Care Behavior

Health) which I believe is nationwide. Your MH/MR caseworker should be

familiar with all these organizations and if they aren't, ask for someone

that does know about these schools. I am a very demanding advocate for

. I found out the hard way that they don't just offer this stuff, you

really have to stay on your toes, do research and don't accept no for an

answer. Resources are out there, WE just have to go after them for what is

best for our kids AND us. If you don't take care of yourself, you can't

take care of anybody else.

, son of

________________________________

From: michelle conaway <micks76hd@... <mailto:micks76hd%40yahoo.com> >

To: " <mailto:%40yahoogroups.com> "

< <mailto:%40yahoogroups.com> >

Sent: Tuesday, October 25, 2011 12:38 PM

Subject: Re: Residential Schools?

Hello group,

In this area, I have had some experience. My son, , 20, resides at

Devereux-Kanner Learning Center in West Chester, PA. When he hit puberty,

everything went downhill. He refused to go to school and missed a year and

a half. His behavior was uncontrollable. He became physical with me and

was basically non-compliant with anything. He would go AWOL that I would

have to call the police to help me find him. After his birth, I did some

research in schools for our children to be prepared for the future. His

father and I visited Devereux and was impressed with the campus, program and

staff. We made the very difficult decision to take him there on October 12,

2007. I cried the whole way home. Partly because I felt I was " deserting "

him and partly out of relief because I knew he would be safe and get the

help and education he needed for the future.

Finally, this Spring, we made the decision of trying to transition him home.

The school had felt they met his needs and we felt he was ready. In March,

we started bringing him home every other weekend. Then we extended visits

home for longer periods. We now have been having meetings to acquire TSS

and BSC services for him to return to York and attend the York Learning

Center through the LIU programs. It appears he may be home for the

holidays. It has been a long and complex journey, but I hope that it works

for all of us. I am excited about him coming home, but also alittle

apprehensive. We have become accustomed to being able to come and go as we

please, but he is our child and our responsibility. At some point, after he

is finished with school in two years, we will begin looking at group homes.

Our (the group) lives are something that people do not understand unless you

live it. They can say anything they want " I can imagine what you are going

through " ....... ha.ha. They don't have a clue. I have no regrets for being

blessed with . I feel I have learned as much from him as I have tried

to teach him. He also has alot of health problems and we have become very

familiar with Hershey Medical Center (the best!) and other doctors too

numerous to name.

Hang in there Amy. Do some research for a place close to where you reside.

Devereux is a two hour drive for us, but it is not far from the northern

border of Eastern land. There are other schools around the Philadelphia

area also. Some close to Devereux. If you desire more information, like a

contact or telephone number there, I'd be glad to put you in touch. Your

MH/MR caseworker should also be able to assist you.

, mother of DS/ASD/Epilepsy...... etc.

________________________________

From: Holly <hdgiglio@... <mailto:hdgiglio%40gmail.com> >

To: <mailto:%40yahoogroups.com>

Sent: Tuesday, October 25, 2011 9:37 AM

Subject: Re: Residential Schools?

Amy, have you checked into sending him to the Kennedy Krieger schools? They

are way more involved as far as programming. It wouldn't be residential but

you might see improvement at home with more intensive school programming

during the day. Especially if you live in maryland. Just a thought.

We went through what you are feeling this past year with Jake when he hit

puberty. It lasted about 8 months and now things have leveled out again. It

is a roller coaster. There are some on this site who have their kids in

programs and it is a very hard decision. It is only one that each individual

family can make. I wish there were more schools for our kids. I wish there

were more options especially as they grow and get too large for us to

handle.

Know, that you are not alone in feeling this way. It is not about how much

you love your child. Some times it is the very thing that you love them so

much and just want something better for them than what we can physically and

emotionall (when we are so tired we cannot function) give anymore.

You can get your school to provide that he goes to KKI, but you have to

proof that they are not giving him the education that he needs. That they

are failing. You have to do that pretty much at any of the programs anyway.

At least with that he would still be close. Just a thought.

Holly

Residential Schools?

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

Amy,

I dont know if this will help but maybe a starting point where someone can

direct you in the right direction for help. It's the land Respite

Coalition 

http://respitecoalition.org/about

Best and warmest regards,

Phoenix, AZ mom to 8 years old (DS/ASD)

 

Villanueva

erika@...

Tel.

www.viajestogo.com

________________________________

To:

Sent: Tuesday, October 25, 2011 6:23 AM

Subject: Residential Schools?

 

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

This may also give you some help.

 

http://www.pathfindersforautism.org/articles/view/respite-services-in-maryland

 

It lists some funding sources for respite in MD. For us respite has been

crucial. It was a struggle to find and qualify but it was SOOO worth it.

 

Hugs,

To: " " < >

Sent: Tuesday, October 25, 2011 2:28 PM

Subject: Re: Residential Schools?

 

Amy,

I dont know if this will help but maybe a starting point where someone can

direct you in the right direction for help. It's the land Respite

Coalition 

http://respitecoalition.org/about

Best and warmest regards,

Phoenix, AZ mom to 8 years old (DS/ASD)

 

Villanueva

erika@...

Tel.

www.viajestogo.com

________________________________

To:

Sent: Tuesday, October 25, 2011 6:23 AM

Subject: Residential Schools?

 

So things here have been really tough, and they just seem to be getting

harder

I was wondering if anyone has sent their child to live somewhere else before

they turned 18? I just can't imagine taking care of Quinn everyday for the

next 10 years if things don't change a lot. I love him so much, but even

changing his diaper takes so much out of me because he doesn't cooperate and

even runs away. He is a big boy, almost 60 lbs and only 7

I wish there was a way for him to be in a program like he is in at his

school, but all the time. I think he would be a lot happier that way too.

We get no respite or any kind of aide except for his school day.

I can only imagine what the amazing residential schools I have seen online

cost. Who would pay for that? Could I get the school district to? I know

it is a good thing that kids with disabilities are not atomatically sent to

live in institutions anymore, but here I am with no help and there seems

like there is nowhere for Quinn to go

We live in land if that makes any difference, maybe it is different

elsewhere but that is how it is here.

Thanks,

Amy

[Guest guest]

you are quite correct that one needs to be a tough negotiator to

advocate for our children.

We MOVED to Chester County to be in proximity to several schools so that

we would have a choice for our son. We looked at Devereaux, Camphill,

, Melmark and Elwyn. There is also Cardinal Cushing.

What isn;t true is that all states have this option. IMHO _ not anywhere

near true! We lived in VA

( only one option for over 18 that was a possibility, but no funding)

before PA (the best for funding thru school and state working together) and

now live in GA.(Only one school that could be a possibility (again Devereaux

but not suitable for our son) No place as has many options as PA/NJ (there

are a couple of places in NJ, there used to be one in DE as well. land

has a few - if one can access them.

On Tue, Oct 25, 2011 at 4:39 PM, michelle conaway wrote:

> **

>

>

> Amy, I forgot to add about funding. If you can prove the school district

> he attends is not meeting his needs, they would have to pay the tuition for

> Quinn to attend a school that can. If he would go residential, our funding

> for to stay on campus comes from CCBH (Community Care Behavior

> Health) which I believe is nationwide. Your MH/MR caseworker should be

> familiar with all these organizations and if they aren't, ask for someone

> that does know about these schools. I am a very demanding advocate for

> . I found out the hard way that they don't just offer this stuff, you

> really have to stay on your toes, do research and don't accept no for an

> answer. Resources are out there, WE just have to go after them for what is

> best for our kids AND us. If you don't take care of yourself, you can't

> take care of anybody else.

>

> , son of

>

> ________________________________

>

> To: " " < >

> Sent: Tuesday, October 25, 2011 12:38 PM

>

> Subject: Re: Residential Schools?

>

>

> Hello group,

>

> In this area, I have had some experience. My son, , 20, resides at

> Devereux-Kanner Learning Center in West Chester, PA. When he hit puberty,

> everything went downhill. He refused to go to school and missed a year and

> a half. His behavior was uncontrollable. He became physical with me and

> was basically non-compliant with anything. He would go AWOL that I would

> have to call the police to help me find him. After his birth, I did some

> research in schools for our children to be prepared for the future. His

> father and I visited Devereux and was impressed with the campus, program and

> staff. We made the very difficult decision to take him there on October 12,

> 2007. I cried the whole way home. Partly because I felt I was " deserting "

> him and partly out of relief because I knew he would be safe and get the

> help and education he needed for the future.

>

> Finally, this Spring, we made the decision of trying to transition him

> home. The school had felt they met his needs and we felt he was ready. In

> March, we started bringing him home every other weekend. Then we extended

> visits home for longer periods. We now have been having meetings to acquire

> TSS and BSC services for him to return to York and attend the York Learning

> Center through the LIU programs. It appears he may be home for the

> holidays. It has been a long and complex journey, but I hope that it works

> for all of us. I am excited about him coming home, but also alittle

> apprehensive. We have become accustomed to being able to come and go as we

> please, but he is our child and our responsibility. At some point, after he

> is finished with school in two years, we will begin looking at group homes.

>

> Our (the group) lives are something that people do not understand unless

> you live it. They can say anything they want " I can imagine what you are

> going through " ....... ha.ha. They don't have a clue. I have no regrets for

> being blessed with . I feel I have learned as much from him as I have

> tried to teach him. He also has alot of health problems and we have become

> very familiar with Hershey Medical Center (the best!) and other doctors too

> numerous to name.

>

> Hang in there Amy. Do some research for a place close to where you reside.

> Devereux is a two hour drive for us, but it is not far from the northern

> border of Eastern land. There are other schools around the Philadelphia

> area also. Some close to Devereux. If you desire more information, like a

> contact or telephone number there, I'd be glad to put you in touch. Your

> MH/MR caseworker should also be able to assist you.

>

> , mother of DS/ASD/Epilepsy...... etc.

>

> ________________________________

>

> To:

> Sent: Tuesday, October 25, 2011 9:37 AM

> Subject: Re: Residential Schools?

>

>

> Amy, have you checked into sending him to the Kennedy Krieger schools? They

> are way more involved as far as programming. It wouldn't be residential but

> you might see improvement at home with more intensive school programming

> during the day. Especially if you live in maryland. Just a thought.

>

> We went through what you are feeling this past year with Jake when he hit

> puberty. It lasted about 8 months and now things have leveled out again. It

> is a roller coaster. There are some on this site who have their kids in

> programs and it is a very hard decision. It is only one that each individual

> family can make. I wish there were more schools for our kids. I wish there

> were more options especially as they grow and get too large for us to

> handle.

>

> Know, that you are not alone in feeling this way. It is not about how much

> you love your child. Some times it is the very thing that you love them so

> much and just want something better for them than what we can physically and

> emotionall (when we are so tired we cannot function) give anymore.

>

> You can get your school to provide that he goes to KKI, but you have to

> proof that they are not giving him the education that he needs. That they

> are failing. You have to do that pretty much at any of the programs anyway.

> At least with that he would still be close. Just a thought.

>

> Holly

>

> Residential Schools?

>

> So things here have been really tough, and they just seem to be getting

> harder

>

> I was wondering if anyone has sent their child to live somewhere else

> before

> they turned 18? I just can't imagine taking care of Quinn everyday for the

> next 10 years if things don't change a lot. I love him so much, but even

> changing his diaper takes so much out of me because he doesn't cooperate

> and

> even runs away. He is a big boy, almost 60 lbs and only 7

>

> I wish there was a way for him to be in a program like he is in at his

> school, but all the time. I think he would be a lot happier that way too.

> We get no respite or any kind of aide except for his school day.

>

> I can only imagine what the amazing residential schools I have seen online

> cost. Who would pay for that? Could I get the school district to? I know

> it is a good thing that kids with disabilities are not atomatically sent to

> live in institutions anymore, but here I am with no help and there seems

> like there is nowhere for Quinn to go

>

> We live in land if that makes any difference, maybe it is different

> elsewhere but that is how it is here.

>

> Thanks,

>

> Amy

>

>

[Guest guest]

Yes, we also looked at Melmark and Cardinal Cushing, but Devereux seemed to meet

's needs the most and was in proximity to where we live.  It has worked

out well for us.  Yes, I am finding out through this support group that we are

lucky to live in PA with all the help we've received.  With the " No Child Left

Behind " in place, I don't understand how any school district can not be

responsible for a child with special needs.  All children are entitled to a

free education until they are 21.  This is the law, or so I thought!  

Yes, I've grown some tough skin since 's birth.  I don't back down too

easy when it comes to him and his needs.  That goes for schools, doctors,

anything.......  I had one doctor call a Mongoloid once.  He's lucky he

is alive.  That term went out with the dinosaurs.  Our kids are smarter than

some people give them credit.   is aware when something is awry.  I know

we can only protect them so far and kids can be cruel, but at least society is

beginning to recognize this.

, mother of DS/ASD/Epilepsy.......etc.

________________________________

To:

Sent: Tuesday, October 25, 2011 9:38 PM

Subject: Re: Residential Schools?

 

you are quite correct that one needs to be a tough negotiator to

advocate for our children.

We MOVED to Chester County to be in proximity to several schools so that

we would have a choice for our son. We looked at Devereaux, Camphill,

, Melmark and Elwyn. There is also Cardinal Cushing.

What isn;t true is that all states have this option. IMHO _ not anywhere

near true! We lived in VA

( only one option for over 18 that was a possibility, but no funding)

before PA (the best for funding thru school and state working together) and

now live in GA.(Only one school that could be a possibility (again Devereaux

but not suitable for our son) No place as has many options as PA/NJ (there

are a couple of places in NJ, there used to be one in DE as well. land

has a few - if one can access them.

On Tue, Oct 25, 2011 at 4:39 PM, michelle conaway wrote:

> **

>

>

> Amy, I forgot to add about funding. If you can prove the school district

> he attends is not meeting his needs, they would have to pay the tuition for

> Quinn to attend a school that can. If he would go residential, our funding

> for to stay on campus comes from CCBH (Community Care Behavior

> Health) which I believe is nationwide. Your MH/MR caseworker should be

> familiar with all these organizations and if they aren't, ask for someone

> that does know about these schools. I am a very demanding advocate for

> . I found out the hard way that they don't just offer this stuff, you

> really have to stay on your toes, do research and don't accept no for an

> answer. Resources are out there, WE just have to go after them for what is

> best for our kids AND us. If you don't take care of yourself, you can't

> take care of anybody else.

>

> , son of

>

> ________________________________

>

> To: " " < >

> Sent: Tuesday, October 25, 2011 12:38 PM

>

> Subject: Re: Residential Schools?

>

>

> Hello group,

>

> In this area, I have had some experience. My son, , 20, resides at

> Devereux-Kanner Learning Center in West Chester, PA. When he hit puberty,

> everything went downhill. He refused to go to school and missed a year and

> a half. His behavior was uncontrollable. He became physical with me and

> was basically non-compliant with anything. He would go AWOL that I would

> have to call the police to help me find him. After his birth, I did some

> research in schools for our children to be prepared for the future. His

> father and I visited Devereux and was impressed with the campus, program and

> staff. We made the very difficult decision to take him there on October 12,

> 2007. I cried the whole way home. Partly because I felt I was " deserting "

> him and partly out of relief because I knew he would be safe and get the

> help and education he needed for the future.

>

> Finally, this Spring, we made the decision of trying to transition him

> home. The school had felt they met his needs and we felt he was ready. In

> March, we started bringing him home every other weekend. Then we extended

> visits home for longer periods. We now have been having meetings to acquire

> TSS and BSC services for him to return to York and attend the York Learning

> Center through the LIU programs. It appears he may be home for the

> holidays. It has been a long and complex journey, but I hope that it works

> for all of us. I am excited about him coming home, but also alittle

> apprehensive. We have become accustomed to being able to come and go as we

> please, but he is our child and our responsibility. At some point, after he

> is finished with school in two years, we will begin looking at group homes.

>

> Our (the group) lives are something that people do not understand unless

> you live it. They can say anything they want " I can imagine what you are

> going through " ....... ha.ha. They don't have a clue. I have no regrets for

> being blessed with . I feel I have learned as much from him as I have

> tried to teach him. He also has alot of health problems and we have become

> very familiar with Hershey Medical Center (the best!) and other doctors too

> numerous to name.

>

> Hang in there Amy. Do some research for a place close to where you reside.

> Devereux is a two hour drive for us, but it is not far from the northern

> border of Eastern land. There are other schools around the Philadelphia

> area also. Some close to Devereux. If you desire more information, like a

> contact or telephone number there, I'd be glad to put you in touch. Your

> MH/MR caseworker should also be able to assist you.

>

> , mother of DS/ASD/Epilepsy...... etc.

>

> ________________________________

>

> To:

> Sent: Tuesday, October 25, 2011 9:37 AM

> Subject: Re: Residential Schools?

>

>

> Amy, have you checked into sending him to the Kennedy Krieger schools? They

> are way more involved as far as programming. It wouldn't be residential but

> you might see improvement at home with more intensive school programming

> during the day. Especially if you live in maryland. Just a thought.

>

> We went through what you are feeling this past year with Jake when he hit

> puberty. It lasted about 8 months and now things have leveled out again. It

> is a roller coaster. There are some on this site who have their kids in

> programs and it is a very hard decision. It is only one that each individual

> family can make. I wish there were more schools for our kids. I wish there

> were more options especially as they grow and get too large for us to

> handle.

>

> Know, that you are not alone in feeling this way. It is not about how much

> you love your child. Some times it is the very thing that you love them so

> much and just want something better for them than what we can physically and

> emotionall (when we are so tired we cannot function) give anymore.

>

> You can get your school to provide that he goes to KKI, but you have to

> proof that they are not giving him the education that he needs. That they

> are failing. You have to do that pretty much at any of the programs anyway.

> At least with that he would still be close. Just a thought.

>

> Holly

>

> Residential Schools?

>

> So things here have been really tough, and they just seem to be getting

> harder

>

> I was wondering if anyone has sent their child to live somewhere else

> before

> they turned 18? I just can't imagine taking care of Quinn everyday for the

> next 10 years if things don't change a lot. I love him so much, but even

> changing his diaper takes so much out of me because he doesn't cooperate

> and

> even runs away. He is a big boy, almost 60 lbs and only 7

>

> I wish there was a way for him to be in a program like he is in at his

> school, but all the time. I think he would be a lot happier that way too.

> We get no respite or any kind of aide except for his school day.

>

> I can only imagine what the amazing residential schools I have seen online

> cost. Who would pay for that? Could I get the school district to? I know

> it is a good thing that kids with disabilities are not atomatically sent to

> live in institutions anymore, but here I am with no help and there seems

> like there is nowhere for Quinn to go

>

> We live in land if that makes any difference, maybe it is different

> elsewhere but that is how it is here.

>

> Thanks,

>

> Amy

>

>

[Guest guest]

The key is our children are netitled to FAPE _ free appropriate education -

not the best - not even better.

But PA s/d seem more willing to recognize what they cannot do. My son did

have to attend an IU school first before they were persuaded that they were

at risk - both physically and mentally to say nothing of the suuit I had

planned for abuse by continuing to educate my son in a sub human manner!

They were happy to pay for him to go to Elwyn - altho he only went as a day

student.

On Tue, Oct 25, 2011 at 10:52 PM, michelle conaway wrote:

> **

>

>

> Yes, we also looked at Melmark and Cardinal Cushing, but Devereux seemed to

> meet 's needs the most and was in proximity to where we live. It has

> worked out well for us. Yes, I am finding out through this support group

> that we are lucky to live in PA with all the help we've received. With the

> " No Child Left Behind " in place, I don't understand how any school district

> can not be responsible for a child with special needs. All children are

> entitled to a free education until they are 21. This is the law, or so I

> thought!

>

> Yes, I've grown some tough skin since 's birth. I don't back down

> too easy when it comes to him and his needs. That goes for schools,

> doctors, anything....... I had one doctor call a Mongoloid once.

> He's lucky he is alive. That term went out with the dinosaurs. Our kids

> are smarter than some people give them credit. is aware when

> something is awry. I know we can only protect them so far and kids can be

> cruel, but at least society is beginning to recognize this.

>

> , mother of DS/ASD/Epilepsy.......etc.

>

> ________________________________

>

> To:

> Sent: Tuesday, October 25, 2011 9:38 PM

>

> Subject: Re: Residential Schools?

>

>

> you are quite correct that one needs to be a tough negotiator to

> advocate for our children.

>

> We MOVED to Chester County to be in proximity to several schools so that

> we would have a choice for our son. We looked at Devereaux, Camphill,

> , Melmark and Elwyn. There is also Cardinal Cushing.

>

> What isn;t true is that all states have this option. IMHO _ not anywhere

> near true! We lived in VA

> ( only one option for over 18 that was a possibility, but no funding)

> before PA (the best for funding thru school and state working together) and

> now live in GA.(Only one school that could be a possibility (again

> Devereaux

> but not suitable for our son) No place as has many options as PA/NJ (there

> are a couple of places in NJ, there used to be one in DE as well. land

> has a few - if one can access them.

>

> On Tue, Oct 25, 2011 at 4:39 PM, michelle conaway <micks76hd@...

> >wrote:

>

> > **

>

> >

> >

> > Amy, I forgot to add about funding. If you can prove the school district

> > he attends is not meeting his needs, they would have to pay the tuition

> for

> > Quinn to attend a school that can. If he would go residential, our

> funding

> > for to stay on campus comes from CCBH (Community Care Behavior

> > Health) which I believe is nationwide. Your MH/MR caseworker should be

> > familiar with all these organizations and if they aren't, ask for someone

> > that does know about these schools. I am a very demanding advocate for

> > . I found out the hard way that they don't just offer this stuff,

> you

> > really have to stay on your toes, do research and don't accept no for an

> > answer. Resources are out there, WE just have to go after them for what

> is

> > best for our kids AND us. If you don't take care of yourself, you can't

> > take care of anybody else.

> >

> > , son of

> >

> > ________________________________

> >

> > To: " " < >

> > Sent: Tuesday, October 25, 2011 12:38 PM

> >

> > Subject: Re: Residential Schools?

> >

> >

> > Hello group,

> >

> > In this area, I have had some experience. My son, , 20, resides at

> > Devereux-Kanner Learning Center in West Chester, PA. When he hit puberty,

> > everything went downhill. He refused to go to school and missed a year

> and

> > a half. His behavior was uncontrollable. He became physical with me and

> > was basically non-compliant with anything. He would go AWOL that I would

> > have to call the police to help me find him. After his birth, I did some

> > research in schools for our children to be prepared for the future. His

> > father and I visited Devereux and was impressed with the campus, program

> and

> > staff. We made the very difficult decision to take him there on October

> 12,

> > 2007. I cried the whole way home. Partly because I felt I was " deserting "

> > him and partly out of relief because I knew he would be safe and get the

> > help and education he needed for the future.

> >

> > Finally, this Spring, we made the decision of trying to transition him

> > home. The school had felt they met his needs and we felt he was ready. In

> > March, we started bringing him home every other weekend. Then we extended

> > visits home for longer periods. We now have been having meetings to

> acquire

> > TSS and BSC services for him to return to York and attend the York

> Learning

> > Center through the LIU programs. It appears he may be home for the

> > holidays. It has been a long and complex journey, but I hope that it

> works

> > for all of us. I am excited about him coming home, but also alittle

> > apprehensive. We have become accustomed to being able to come and go as

> we

> > please, but he is our child and our responsibility. At some point, after

> he

> > is finished with school in two years, we will begin looking at group

> homes.

> >

> > Our (the group) lives are something that people do not understand unless

> > you live it. They can say anything they want " I can imagine what you are

> > going through " ....... ha.ha. They don't have a clue. I have no regrets

> for

> > being blessed with . I feel I have learned as much from him as I

> have

> > tried to teach him. He also has alot of health problems and we have

> become

> > very familiar with Hershey Medical Center (the best!) and other doctors

> too

> > numerous to name.

> >

> > Hang in there Amy. Do some research for a place close to where you

> reside.

> > Devereux is a two hour drive for us, but it is not far from the northern

> > border of Eastern land. There are other schools around the

> Philadelphia

> > area also. Some close to Devereux. If you desire more information, like a

> > contact or telephone number there, I'd be glad to put you in touch. Your

> > MH/MR caseworker should also be able to assist you.

> >

> > , mother of DS/ASD/Epilepsy...... etc.

> >

> > ________________________________

> >

> > To:

> > Sent: Tuesday, October 25, 2011 9:37 AM

> > Subject: Re: Residential Schools?

> >

> >

> > Amy, have you checked into sending him to the Kennedy Krieger schools?

> They

> > are way more involved as far as programming. It wouldn't be residential

> but

> > you might see improvement at home with more intensive school programming

> > during the day. Especially if you live in maryland. Just a thought.

> >

> > We went through what you are feeling this past year with Jake when he hit

> > puberty. It lasted about 8 months and now things have leveled out again.

> It

> > is a roller coaster. There are some on this site who have their kids in

> > programs and it is a very hard decision. It is only one that each

> individual

> > family can make. I wish there were more schools for our kids. I wish

> there

> > were more options especially as they grow and get too large for us to

> > handle.

> >

> > Know, that you are not alone in feeling this way. It is not about how

> much

> > you love your child. Some times it is the very thing that you love them

> so

> > much and just want something better for them than what we can physically

> and

> > emotionall (when we are so tired we cannot function) give anymore.

> >

> > You can get your school to provide that he goes to KKI, but you have to

> > proof that they are not giving him the education that he needs. That they

> > are failing. You have to do that pretty much at any of the programs

> anyway.

> > At least with that he would still be close. Just a thought.

> >

> > Holly

> >

> > Residential Schools?

> >

> > So things here have been really tough, and they just seem to be getting

> > harder

> >

> > I was wondering if anyone has sent their child to live somewhere else

> > before

> > they turned 18? I just can't imagine taking care of Quinn everyday for

> the

> > next 10 years if things don't change a lot. I love him so much, but even

> > changing his diaper takes so much out of me because he doesn't cooperate

> > and

> > even runs away. He is a big boy, almost 60 lbs and only 7

> >

> > I wish there was a way for him to be in a program like he is in at his

> > school, but all the time. I think he would be a lot happier that way too.

> > We get no respite or any kind of aide except for his school day.

> >

> > I can only imagine what the amazing residential schools I have seen

> online

> > cost. Who would pay for that? Could I get the school district to? I know

> > it is a good thing that kids with disabilities are not atomatically sent

> to

> > live in institutions anymore, but here I am with no help and there seems

> > like there is nowhere for Quinn to go

> >

> > We live in land if that makes any difference, maybe it is different

> > elsewhere but that is how it is here.

> >

> > Thanks,

> >

> > Amy

> >

> >

[Guest guest]

Someone on this list got a grant for 20 hours ABA in the home each week. Maybe

that could help, while you look for a residential placement?

Sent from my iPhone

> Hi ,

>

> I think the main problem is I live in the wrong state. We don't even have a

> caseworker! We did consider at one point moving to PA but it was just too

> complicated, now I wish we had There seem to be a lot of good schools in

> PA, but I wonder if MD would pay for them.

>

> The thing is that I think Quinn needs more than just what they can give him

> at school. He needs someone to teach him to / help him live at home. He

> needs consistent potty training and eyes on him 24 hours. I just tried to

> take him to the potty and I feel like I ran a marathon. He won't keep his

> hands out of the toilet and he tore up the bathroom. I just don't have the

> energy for that, maybe it is because I also have another son with Autism,

> maybe it is because I have severe arthritis that makes me weak and

> exhausted. Maybe I am just not strong enough

>

> We got a referal to a Social Worker at KKI, but they never called for an

> appointment. She just sent a list of places that provide respite, great and

> how do I pay for that? Sigh...

>

> Amy

>

> _____

>

> From: [mailto: ] On Behalf

> Of michelle conaway

> Sent: Tuesday, October 25, 2011 4:40 PM

> To:

> Subject: Re: Residential Schools?

>

> Amy, I forgot to add about funding. If you can prove the school district he

> attends is not meeting his needs, they would have to pay the tuition for

> Quinn to attend a school that can. If he would go residential, our funding

> for to stay on campus comes from CCBH (Community Care Behavior

> Health) which I believe is nationwide. Your MH/MR caseworker should be

> familiar with all these organizations and if they aren't, ask for someone

> that does know about these schools. I am a very demanding advocate for

> . I found out the hard way that they don't just offer this stuff, you

> really have to stay on your toes, do research and don't accept no for an

> answer. Resources are out there, WE just have to go after them for what is

> best for our kids AND us. If you don't take care of yourself, you can't

> take care of anybody else.

>

> , son of

>

> ________________________________

> From: michelle conaway <micks76hd@... <mailto:micks76hd%40yahoo.com> >

> To: " <mailto:%40yahoogroups.com> "

> < <mailto:%40yahoogroups.com> >

> Sent: Tuesday, October 25, 2011 12:38 PM

> Subject: Re: Residential Schools?

>

> Hello group,

>

> In this area, I have had some experience. My son, , 20, resides at

> Devereux-Kanner Learning Center in West Chester, PA. When he hit puberty,

> everything went downhill. He refused to go to school and missed a year and

> a half. His behavior was uncontrollable. He became physical with me and

> was basically non-compliant with anything. He would go AWOL that I would

> have to call the police to help me find him. After his birth, I did some

> research in schools for our children to be prepared for the future. His

> father and I visited Devereux and was impressed with the campus, program and

> staff. We made the very difficult decision to take him there on October 12,

> 2007. I cried the whole way home. Partly because I felt I was " deserting "

> him and partly out of relief because I knew he would be safe and get the

> help and education he needed for the future.

>

> Finally, this Spring, we made the decision of trying to transition him home.

> The school had felt they met his needs and we felt he was ready. In March,

> we started bringing him home every other weekend. Then we extended visits

> home for longer periods. We now have been having meetings to acquire TSS

> and BSC services for him to return to York and attend the York Learning

> Center through the LIU programs. It appears he may be home for the

> holidays. It has been a long and complex journey, but I hope that it works

> for all of us. I am excited about him coming home, but also alittle

> apprehensive. We have become accustomed to being able to come and go as we

> please, but he is our child and our responsibility. At some point, after he

> is finished with school in two years, we will begin looking at group homes.

>

> Our (the group) lives are something that people do not understand unless you

> live it. They can say anything they want " I can imagine what you are going

> through " ....... ha.ha. They don't have a clue. I have no regrets for being

> blessed with . I feel I have learned as much from him as I have tried

> to teach him. He also has alot of health problems and we have become very

> familiar with Hershey Medical Center (the best!) and other doctors too

> numerous to name.

>

> Hang in there Amy. Do some research for a place close to where you reside.

> Devereux is a two hour drive for us, but it is not far from the northern

> border of Eastern land. There are other schools around the Philadelphia

> area also. Some close to Devereux. If you desire more information, like a

> contact or telephone number there, I'd be glad to put you in touch. Your

> MH/MR caseworker should also be able to assist you.

>

> , mother of DS/ASD/Epilepsy...... etc.

>

> ________________________________

> From: Holly <hdgiglio@... <mailto:hdgiglio%40gmail.com> >

> To: <mailto:%40yahoogroups.com>

> Sent: Tuesday, October 25, 2011 9:37 AM

> Subject: Re: Residential Schools?

>

> Amy, have you checked into sending him to the Kennedy Krieger schools? They

> are way more involved as far as programming. It wouldn't be residential but

> you might see improvement at home with more intensive school programming

> during the day. Especially if you live in maryland. Just a thought.

>

> We went through what you are feeling this past year with Jake when he hit

> puberty. It lasted about 8 months and now things have leveled out again. It

> is a roller coaster. There are some on this site who have their kids in

> programs and it is a very hard decision. It is only one that each individual

> family can make. I wish there were more schools for our kids. I wish there

> were more options especially as they grow and get too large for us to

> handle.

>

> Know, that you are not alone in feeling this way. It is not about how much

> you love your child. Some times it is the very thing that you love them so

> much and just want something better for them than what we can physically and

> emotionall (when we are so tired we cannot function) give anymore.

>

> You can get your school to provide that he goes to KKI, but you have to

> proof that they are not giving him the education that he needs. That they

> are failing. You have to do that pretty much at any of the programs anyway.

> At least with that he would still be close. Just a thought.

>

> Holly

>

> Residential Schools?

>

> So things here have been really tough, and they just seem to be getting

> harder

>

> I was wondering if anyone has sent their child to live somewhere else before

> they turned 18? I just can't imagine taking care of Quinn everyday for the

> next 10 years if things don't change a lot. I love him so much, but even

> changing his diaper takes so much out of me because he doesn't cooperate and

> even runs away. He is a big boy, almost 60 lbs and only 7

>

> I wish there was a way for him to be in a program like he is in at his

> school, but all the time. I think he would be a lot happier that way too.

> We get no respite or any kind of aide except for his school day.

>

> I can only imagine what the amazing residential schools I have seen online

> cost. Who would pay for that? Could I get the school district to? I know

> it is a good thing that kids with disabilities are not atomatically sent to

> live in institutions anymore, but here I am with no help and there seems

> like there is nowhere for Quinn to go

>

> We live in land if that makes any difference, maybe it is different

> elsewhere but that is how it is here.

>

> Thanks,

>

> Amy

>

>

[Guest guest]

Hi Amy

Rushing around doing stuff this morning that need tending asop, but I will

write our experience later this morning. Maddie is at Melmark, in

residential for the past year. I'll give our story and see if it helps you.

Hugs,

Donna

> So things here have been really tough, and they just seem to be getting

> harder

>

> I was wondering if anyone has sent their child to live somewhere else before

> they turned 18? I just can't imagine taking care of Quinn everyday for the

> next 10 years if things don't change a lot. I love him so much, but even

> changing his diaper takes so much out of me because he doesn't cooperate and

> even runs away. He is a big boy, almost 60 lbs and only 7

>

> I wish there was a way for him to be in a program like he is in at his

> school, but all the time. I think he would be a lot happier that way too.

> We get no respite or any kind of aide except for his school day.

>

> I can only imagine what the amazing residential schools I have seen online

> cost. Who would pay for that? Could I get the school district to? I know

> it is a good thing that kids with disabilities are not atomatically sent to

> live in institutions anymore, but here I am with no help and there seems

> like there is nowhere for Quinn to go

>

> We live in land if that makes any difference, maybe it is different

> elsewhere but that is how it is here.

>

> Thanks,

>

> Amy

>

>

[Guest guest]

Amy,

We placed Maddie at Melmark on September 9th of 2010. She had been a day

student there for 10 years, so her transition was so smooth, we just couldn't

believe it. I won't go into the personal aspects of how we made our decision

(it's in a prior post months ago anyway), but suffice it to say that we didn't

make it lightly or quickly. However I did have a sort of epiphany. Like

Quinn, Maddie (18 at the end of November) is still in diapers and weighs a lot

more than me. She has a lot of behaviors that are extremely challenging but

the most urgent of them has always been her craving for dangerous activity

(running in traffic, climbing out windows, roof walking.....just to name a few).

I believe my " epiphany " and therefore change of heart came about right after she

climbed out the car window I was driving on the expressway at rush hour (only

those who've experienced Maddie know how fast and slick she is....like a mouse

with no bones she squeezes through anything). Her quality of life factored

in big time for us....she essentially had none since to keep her safe we had to

lock everything up and lock her in from things. So we started the process.

It turned out that the quickest (and most acceptable to us) route was through

RTF (residential treatment faciity) placement. It's a category that typically

is utilized for kids with emotional and unstable behaviors, not for kids with

MR. Maddie is living at Engle House at Melmark, which holds all the RTF

kids; she is the only one from Philadelphia at the moment. CBH (Community

Behavioral Health) pays for the residential piece and the school district

continues to pay for the educational piece. The other kids who come from

surrounding counties or states are paid for by other sources, a large one here

being Magellan. Now, the bad part for us parents is that RTF is designed to

be a temporary placement (12 to 15 months), and obviously our kids aren't going

to get " fixed " and sent home. For instance, we feel pretty confident that the

danger seeking behavior in Maddie isn't going to go away. Maybe it will

eventually, but she is 17 and it started since she could walk and has only

gotten worse as she ages and gets smarter in figuring out how to do

EVERYTHING!!!!!! We will cross that bridge when we come to it. Our

argument will be that the initial reason for placement remains; she is unsafe at

home. And we are prepared to fight with everything we have, not just for her

safety; she has an amazing quality of life there. Her room and house is like

a dorm, and she loves all her caregivers and even her dormmates. Yes, she

still pulls all her stuff, but she has at least one person with her constantly,

and often (especially on outings) two or three. She is happy to see us, and

happy when we take her back. We call every day (talk to staff....Maddie is

non-verbal and won't let you put a phone to her ear) and bring her home every

Sunday to see her siblings. I always say that if we had to put together a

proposal to God for how we wanted this to look, we couldn't have written it this

good!!!! At the moment, she has the best of both worlds.

If you have any further questions, please feel free to ask ,or email me

privately. It's brutally hard stuff, but sometimes it works out wonderfully.

Hugs,

Donna

> Hi Amy

> Rushing around doing stuff this morning that need tending asop, but I will

write our experience later this morning. Maddie is at Melmark, in

residential for the past year. I'll give our story and see if it helps you.

> Hugs,

> Donna

>

>

>

>> So things here have been really tough, and they just seem to be getting

>> harder

>>

>> I was wondering if anyone has sent their child to live somewhere else before

>> they turned 18? I just can't imagine taking care of Quinn everyday for the

>> next 10 years if things don't change a lot. I love him so much, but even

>> changing his diaper takes so much out of me because he doesn't cooperate and

>> even runs away. He is a big boy, almost 60 lbs and only 7

>>

>> I wish there was a way for him to be in a program like he is in at his

>> school, but all the time. I think he would be a lot happier that way too.

>> We get no respite or any kind of aide except for his school day.

>>

>> I can only imagine what the amazing residential schools I have seen online

>> cost. Who would pay for that? Could I get the school district to? I know

>> it is a good thing that kids with disabilities are not atomatically sent to

>> live in institutions anymore, but here I am with no help and there seems

>> like there is nowhere for Quinn to go

>>

>> We live in land if that makes any difference, maybe it is different

>> elsewhere but that is how it is here.

>>

>> Thanks,

>>

>> Amy

>>

>>

[Guest guest]

Hi Donna,

You sound like you are on the same path as our family.  , 20, has been at

Devereux for over four years and we are now in the process of transitioning him

home.  (You can read from my previous posts to Amy).  Luckily, it sounds like

PA is a state for our kids to grow up in.  I never realized that so many other

states did not have the same resources.  We hope will be home by the

holidays, but Devereux will only discharge him if we have TSS and BSC services

in place.

I'm glad Maddie made such a smooth transition.  Ours did not go as smooth.

  did not, and still has not, enjoyed living at school and returning him

there after a visit was a nightmare, but with him knowing we are working on

bringing him home, his trips have become much more easier.

He has two years of school left, so our next big transtion will finding

either/or a group home or work placement with a job coach.

, mother of , 20, DS/ASD/Epilepsy.....etc.

________________________________

To:

Sent: Wednesday, October 26, 2011 12:03 PM

Subject: Re: Residential Schools?

 

Amy,

We placed Maddie at Melmark on September 9th of 2010. She had been a day

student there for 10 years, so her transition was so smooth, we just couldn't

believe it. I won't go into the personal aspects of how we made our decision

(it's in a prior post months ago anyway), but suffice it to say that we didn't

make it lightly or quickly. However I did have a sort of epiphany. Like

Quinn, Maddie (18 at the end of November) is still in diapers and weighs a lot

more than me. She has a lot of behaviors that are extremely challenging but

the most urgent of them has always been her craving for dangerous activity

(running in traffic, climbing out windows, roof walking.....just to name a few).

I believe my " epiphany " and therefore change of heart came about right after she

climbed out the car window I was driving on the expressway at rush hour (only

those who've experienced Maddie know how fast and slick she is....like a mouse

with no bones she

squeezes through anything). Her quality of life factored in big time for

us....she essentially had none since to keep her safe we had to lock everything

up and lock her in from things. So we started the process. It turned out

that the quickest (and most acceptable to us) route was through RTF (residential

treatment faciity) placement. It's a category that typically is utilized for

kids with emotional and unstable behaviors, not for kids with MR. Maddie

is living at Engle House at Melmark, which holds all the RTF kids; she is the

only one from Philadelphia at the moment. CBH (Community Behavioral Health)

pays for the residential piece and the school district continues to pay for the

educational piece. The other kids who come from surrounding counties or

states are paid for by other sources, a large one here being Magellan. Now,

the bad part for us parents is that RTF is designed to be a temporary placement

(12 to 15

months), and obviously our kids aren't going to get " fixed " and sent home.

For instance, we feel pretty confident that the danger seeking behavior in

Maddie isn't going to go away. Maybe it will eventually, but she is 17 and it

started since she could walk and has only gotten worse as she ages and gets

smarter in figuring out how to do EVERYTHING!!!!!! We will cross that bridge

when we come to it. Our argument will be that the initial reason for placement

remains; she is unsafe at home. And we are prepared to fight with everything

we have, not just for her safety; she has an amazing quality of life there.

Her room and house is like a dorm, and she loves all her caregivers and even her

dormmates. Yes, she still pulls all her stuff, but she has at least one

person with her constantly, and often (especially on outings) two or three.

She is happy to see us, and happy when we take her back. We call every day

(talk to

staff....Maddie is non-verbal and won't let you put a phone to her ear) and

bring her home every Sunday to see her siblings. I always say that if we had

to put together a proposal to God for how we wanted this to look, we couldn't

have written it this good!!!! At the moment, she has the best of both worlds.

If you have any further questions, please feel free to ask ,or email me

privately. It's brutally hard stuff, but sometimes it works out wonderfully.

Hugs,

Donna

> Hi Amy

> Rushing around doing stuff this morning that need tending asop, but I will

write our experience later this morning. Maddie is at Melmark, in

residential for the past year. I'll give our story and see if it helps you.

> Hugs,

> Donna

>

>

>

>> So things here have been really tough, and they just seem to be getting

>> harder

>>

>> I was wondering if anyone has sent their child to live somewhere else before

>> they turned 18? I just can't imagine taking care of Quinn everyday for the

>> next 10 years if things don't change a lot. I love him so much, but even

>> changing his diaper takes so much out of me because he doesn't cooperate and

>> even runs away. He is a big boy, almost 60 lbs and only 7

>>

>> I wish there was a way for him to be in a program like he is in at his

>> school, but all the time. I think he would be a lot happier that way too.

>> We get no respite or any kind of aide except for his school day.

>>

>> I can only imagine what the amazing residential schools I have seen online

>> cost. Who would pay for that? Could I get the school district to? I know

>> it is a good thing that kids with disabilities are not atomatically sent to

>> live in institutions anymore, but here I am with no help and there seems

>> like there is nowhere for Quinn to go

>>

>> We live in land if that makes any difference, maybe it is different

>> elsewhere but that is how it is here.

>>

>> Thanks,

>>

>> Amy

>>

>>

[Guest guest]

Hi Amy,

I'm in land. My son is 11 years old, and I'm concerned that he may need to

eventually go to a residential facility. The Benedictine school in Ridgely,

land is the only option I know of for our kids in this area. Has anyone on

this list heard anything about the Benedictine school? I know Dr. Capone used

to periodically visit the school.

Also, re PA, I've heard some counties are good for services and schools, but

others are not. Could anyone who's lived in PA provide more info? We're in

Northern land and have considered moving to PA if it would be more

beneficial for our son.

It's my understanding that one of the ways to get a private school paid for is

if the team agrees and puts in the IEP needed services that aren't available at

the public school (such as psychiatric care at the facility). Just a thought.

Please feel free to e-mail me directly.

Take care!

Barbara

[Guest guest]

Barbara, as I explained, our daughter is in residential under the category of

RTF. In order to have it paid for by CBH, it needs to be considered " medically

necessary " . So we essentially have to keep proving that medically, she needs

to be there. We consider her inability to keep herself safe to be a medical

condition. Believe me, it's not an easy thing to get approved. However,

nobody sold it better than Maddie herself....she performed her typical feats for

them. Thankfully, she never made liars out of us.

Donna

> Hi Amy,

>

> I'm in land. My son is 11 years old, and I'm concerned that he may need to

eventually go to a residential facility. The Benedictine school in Ridgely,

land is the only option I know of for our kids in this area. Has anyone on

this list heard anything about the Benedictine school? I know Dr. Capone used to

periodically visit the school.

>

> Also, re PA, I've heard some counties are good for services and schools, but

others are not. Could anyone who's lived in PA provide more info? We're in

Northern land and have considered moving to PA if it would be more

beneficial for our son.

>

> It's my understanding that one of the ways to get a private school paid for is

if the team agrees and puts in the IEP needed services that aren't available at

the public school (such as psychiatric care at the facility). Just a thought.

Please feel free to e-mail me directly.

>

> Take care!

>

> Barbara

>

>

[Guest guest]

OH, and BTW, since it's an " insurance company " paying, we have to go through a

" re-auth " every 90 days. Melmark has to do astronomical amounts of work in

preparation for these re-ups. The hoops to jump through are continual.

D

> Barbara, as I explained, our daughter is in residential under the category of

RTF. In order to have it paid for by CBH, it needs to be considered " medically

necessary " . So we essentially have to keep proving that medically, she needs

to be there. We consider her inability to keep herself safe to be a medical

condition. Believe me, it's not an easy thing to get approved. However,

nobody sold it better than Maddie herself....she performed her typical feats for

them. Thankfully, she never made liars out of us.

> Donna

>

>

>

>

>> Hi Amy,

>>

>> I'm in land. My son is 11 years old, and I'm concerned that he may need

to eventually go to a residential facility. The Benedictine school in Ridgely,

land is the only option I know of for our kids in this area. Has anyone on

this list heard anything about the Benedictine school? I know Dr. Capone used to

periodically visit the school.

>>

>> Also, re PA, I've heard some counties are good for services and schools, but

others are not. Could anyone who's lived in PA provide more info? We're in

Northern land and have considered moving to PA if it would be more

beneficial for our son.

>>

>> It's my understanding that one of the ways to get a private school paid for

is if the team agrees and puts in the IEP needed services that aren't available

at the public school (such as psychiatric care at the facility). Just a thought.

Please feel free to e-mail me directly.

>>

>> Take care!

>>

>> Barbara

>>

>>

[Guest guest]

From my experience in PA - here are the eastern counties most helpful:

Philadelphia, Chester, Montgomery, Delaware. I also hear that Pittsburgh

has some good servies but too fat to commute from MD. Also e=where there

are a number of facilities suitable for many of our children. Many have a

day and residential program.

The medical criteria is generally health and safety: Can a child be kept

healthy and safe at home and or school - as Maddie has proven she cannot

be.

> Barbara, as I explained, our daughter is in residential under the category

> of RTF. In order to have it paid for by CBH, it needs to be considered

> " medically necessary " . So we essentially have to keep proving that

> medically, she needs to be there. We consider her inability to keep

> herself safe to be a medical condition. Believe me, it's not an easy thing

> to get approved. However, nobody sold it better than Maddie

> herself....she performed her typical feats for them. Thankfully, she never

> made liars out of us.

> Donna

>

>

>

>

> > Hi Amy,

> >

> > I'm in land. My son is 11 years old, and I'm concerned that he may

> need to eventually go to a residential facility. The Benedictine school in

> Ridgely, land is the only option I know of for our kids in this area.

> Has anyone on this list heard anything about the Benedictine school? I know

> Dr. Capone used to periodically visit the school.

> >

> > Also, re PA, I've heard some counties are good for services and schools,

> but others are not. Could anyone who's lived in PA provide more info? We're

> in Northern land and have considered moving to PA if it would be more

> beneficial for our son.

> >

> > It's my understanding that one of the ways to get a private school paid

> for is if the team agrees and puts in the IEP needed services that aren't

> available at the public school (such as psychiatric care at the facility).

> Just a thought. Please feel free to e-mail me directly.

> >

> > Take care!

> >

> > Barbara

> >

> >