Re: //Residential Schools?

[Guest guest]

Hi ,

Is the ARC (Association for Retarded Citzens) the same thing as the Mental

Health/Mental Retardation Office that you mentioned?

In NJ, we have an ARC office in each county that offers respite services,

sometimes early intervention/camps, etc. -

To:

From: micks76hd@...

Date: Tue, 25 Oct 2011 14:22:33 -0700

Subject: Re: Residential Schools?

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]

The ARCV is a private not for profit. IT should not be the county/state

MR?MH?ID?DD department .

On Tue, Oct 25, 2011 at 9:13 PM, McDonnell

wrote:

>

> Hi ,

>

> Is the ARC (Association for Retarded Citzens) the same thing as the Mental

> Health/Mental Retardation Office that you mentioned?

> In NJ, we have an ARC office in each county that offers respite services,

> sometimes early intervention/camps, etc. -

>

>

>

>

>

>

> To:

> From: micks76hd@...

> Date: Tue, 25 Oct 2011 14:22:33 -0700

> Subject: Re: Residential Schools?

>

>

>

>

>

>

> 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]

No, the ARC is not involved, to my knowledge, in the schooling process.  All of

's schooling has been handled through his caseworker/school district and

the LIU (Lincoln Intermediate Unit) program.  ARC has Camp Pennwood in our area

for summer campers Monday through Friday. They also help with Special Olympics.

 We also have the Best Buddies program in our area.  I guess I was under the

assumption most areas have these programs, but unfortunately they don't.  I

don't know what I would have done without all these agencies.  

When was born, at the age of three weeks, UCP (United Cerebral Palsy)

began his therapies and from there we were very lucky to have a very good MH/MR

caseworker to help guide us.  Also I got information from PEN (Pennsylvania

Education Network).

There are alot of resources out there, as I said before, you just have to do

alot of research.  I know it takes time, but they just don't dish this stuff

out. Caseworkers are overloaded and budgets are continually cut.  It is sad.

________________________________

To:

Sent: Tuesday, October 25, 2011 9:42 PM

Subject: Re: //Residential Schools?

 

The ARCV is a private not for profit. IT should not be the county/state

MR?MH?ID?DD department .

On Tue, Oct 25, 2011 at 9:13 PM, McDonnell

wrote:

>

> Hi ,

>

> Is the ARC (Association for Retarded Citzens) the same thing as the Mental

> Health/Mental Retardation Office that you mentioned?

> In NJ, we have an ARC office in each county that offers respite services,

> sometimes early intervention/camps, etc. -

>

>

>

>

>

>

> To:

> From: micks76hd@...

> Date: Tue, 25 Oct 2011 14:22:33 -0700

> Subject: Re: Residential Schools?

>

>

>

>

>

>

> 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]

They DO?

Sent from my iPhone

>

> Hi ,

>

> Is the ARC (Association for Retarded Citzens) the same thing as the Mental

Health/Mental Retardation Office that you mentioned?

> In NJ, we have an ARC office in each county that offers respite services,

sometimes early intervention/camps, etc. -

>

>

>

>

>

>

> To:

> From: micks76hd@...

> Date: Tue, 25 Oct 2011 14:22:33 -0700

> Subject: Re: Residential Schools?

>

>

>

>

>

>

> 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

>

>