Re: placement

[Guest guest]

I have the exact feelings inwhich you described in this message. And I am so thankful that your response was sincere and truly from the heart inwhich most of our hearts feel. I think that when we are so unsure with our guilt and responsibilities for our children we turn to someone that is in the same situation to help us see we are not always alone in our battle of Autism. Thank you!> > From: tishannepatterson <tishannepatterson@ ...>> Subject: Re: placement> To: AutismBehaviorProbl emsyahoogroups (DOT) com> Date: Thursday, September 11, 2008, 8:53 PM> > > > > > > My heart felt thoughts go out to you as a single parent dealing with > a family crisis. Being at the helm of all the descisions and > especially one about placing your child is tremendous stress. I hope > what ever choice you make, you realize you are not alone in your > struggle to do whats right as a caring,loving parent. If you do place > your son being an active parent by phone and

visiting will always be > better then an absent parent. You can only do what is right for your > family and go from there. It will be hard to cope with either way. I > have a son who is autistic and is placed away from home,he is 10. I > have a cousin who was deaf. He went to live at a school for the deaf. > His family needed those years to learn how to communicate and they > spent their years learning to sign while he was gone. He came home > for holidays and they sent picture letters often,he grew up away from > home. In hollywood the stars have respite,resorts and schools for > their children while they are busy with acting careers,rehabs ect. No > one ever questions their choices or time away from their children. > The best way I found to get the help and support I needed for my > family and child with autism when he began attacking us was

calling > the medics. The ER Dr.s will make that much needed paper trail. The > doors for help and services open then. I could never secure what was > needed through our pediatrician, behavioral therapist or social > workers and programs. The ER Drs can also give you an emergency > medicine for violent attacks that will help your child and you to be > safe. Ask about a drug called Zidus. Stay away from Lorazapam because > your child may loose his inhibitions and become more dangerous to > your family or himself. There is always an underlying cause of > aggression. It will take plenty of your input and many Dr.s to find > the core cause. They may take him inhouse for this time of discovery > for tests and observation. Make sure your calls and visits are > specifically for autism with aggression against you and your family. > The super strength

our children get from adrenaline during a rage can > make them very strong and it can wear you out and it hurts. Your > other child needs a safe place to go or a room with a lock during the > most extreme times. I had to learn how to pin my son because I am not > big or strong enough to fight him. This was so scarry. I cried and > cried after the medics came to help us. It was so hard yet I knew it > was the right thing to do,the only thing I could do. No matter what > choice you make it will be the best you could do. Also have you > applied for social security disability? Your child may be eligible > for financial and medical help. If you have a mental health crisis > line number call it when ever you need to. Its a paper trail history > that will open doors for you and bring you answers. You are not alone > and my thoughts and prayers are with

you and your family during your > hard times and happy ones.> Best wishes,> Tishanne> > > From: stacie <hawkie6@ >> > Subject: Re: placement> > To: AutismBehaviorProbl emsyahoogroups (DOT) com> > Date: Thursday, September 11, 2008, 1:34 AM> > > > > > > > > > Oh my! I am so sorry you are going through this! Where are you at > in Illinois? I live in Aurora! What residential place is it that you > could send him to?> > Stacie > > Sent via BlackBerry by AT & T > > > > ------------ ----> > From: "skyzalex" <skyzalexyahoo (DOT) com>> > Date: Thu, 11 Sep 2008 02:55:56 -0000> > To: <AutismBehaviorProb l emsyahoogroups (DOT) com>> > Subject: placement> >

> > > > > > I was hoping that maybe I can get some support or suggestions, > seeing > > we all seem to be the only ones to understand our situations. I > have > > a son whom is almost 8 years old and Autistic. I am single parent > and > > also have a 11 yr old. I have been fighting for many years for > help, > > services for him. Well finally there was a partial residential > > program that was willing to take him. Then guaranteed that this was > > the appropriate program. I also had some friends come with to > > meetings, that maybe they would hear things that maybe a desperate > > mother may not see, and they would see it in another perspective. > > Well my son is high functioning, It took me about 4 years alone, > with > > bearly much support, lots of trial and error (too many

errors!!) > but, > > finally we would be able to sit down and eat out, go to the stores > > and not have to rush as fast as possible, so he wouldn't have a > > meltdown and we wouldn't get everything we need, many meltdowns on > a > > daily basis ect..I am sure you know exactly what I am talking > about. > > Well he was having maybe two meltdowns a month, and yes they were > bad > > but only lasted sometimes 15mins and was easily redirectable but > hey > > thats great and I was happy. Well..he went to a life skills > training > > program, which he would be home on weekends, holidays, ect. And > they > > told me he was a perfect fit. I told them that I do not want him > with > > children on the spectrum that were severe, only because we all know > > that Autistic children

mimic..and my son gets really emotional if > he > > is around a child whom hurts themselves (which is so odd, because > he > > bites himself, screams, you name it he has done it) Well he really > > freaks out when others do it..well they told me that there was no > > children in this program that would raise any suggestion that he > > would not be a perfect fit with them. Well guess what. My son was > not > > a fit and went backwards almost immediately, he started wetting his > > pants, they shadowed him in every aspect, I haven't had him > connected > > to my hip like he was when after the 1st week since he was about 5 > > yrs old. He lost all knowledge, and lets talk about working hard on > > redirecting him, thats hard work at first but he was easily > > redirectable before the program, I could not

redirect him at all. > He > > wouldn't dress himself, he wouldn't grab his own snack or drink > > anymore, it was like the struggle and hard work and all of the > > beatings I had endured over the years was for nothing!!! Well I > > talked to the center and they said even though he knew his schedule > > and how to do things, he didnt master them and they all get > > shadowed..I explained he wets his pants and acts like he doesnt > know > > when to go unless directed. He has been potty trained with very few > > accidents in a year. He was mild autistic to severe in just a few > > weeks and He is big and I was scared to have him in the car. And > > wanted to cry. He attacts me constantly now, and his sister, better > > yet he never hit another person besides us, well now he does..he > > attacted his sisters

friend and now he wants to hump everything and > > everyone. Well needless to say I took him out. They were not happy,> > > > Sent via BlackBerry by AT & T> >>

[Guest guest]

I just moved here about a month ago. I was living in Warrenville. I would love to get together sometime. I think that would be great!! I was so nervous to send a response on this group seeing that some people are not so supportive. I also got a mean response on what I sent and I don't see how people can join a support group and not offer support. But let me know how I can send you my phone number privately so that way the non supportive people do not call me with mean messages.

From: stacie <hawkie6aol (DOT) com>Subject: Re: placementTo: AutismBehaviorProbl emsyahoogroups (DOT) comDate: Thursday, September 11, 2008, 1:34 AM

Oh my! I am so sorry you are going through this! Where are you at in Illinois? I live in Aurora! What residential place is it that you could send him to?Stacie

Sent via BlackBerry by AT & T

From: "skyzalex" <skyzalexyahoo (DOT) com>Date: Thu, 11 Sep 2008 02:55:56 -0000To: <AutismBehaviorProbl emsyahoogroups (DOT) com>Subject: placement

I was hoping that maybe I can get some support or suggestions, seeing we all seem to be the only ones to understand our situations. I have a son whom is almost 8 years old and Autistic. I am single parent and also have a 11 yr old. I have been fighting for many years for help, services for him. Well finally there was a partial residential program that was willing to take him. Then guaranteed that this was the appropriate program. I also had some friends come with to meetings, that maybe they would hear things that maybe a desperate mother may not see, and they would see it in another perspective. Well my son is high functioning, It took me about 4 years alone, with bearly much support, lots of trial and error (too many errors!!) but, finally we would be able to sit down and eat out, go to the stores and not have to rush as fast as possible, so he wouldn't have a meltdown and we wouldn't get

everything we need, many meltdowns on a daily basis ect..I am sure you know exactly what I am talking about. Well he was having maybe two meltdowns a month, and yes they were bad but only lasted sometimes 15mins and was easily redirectable but hey thats great and I was happy. Well..he went to a life skills training program, which he would be home on weekends, holidays, ect. And they told me he was a perfect fit. I told them that I do not want him with children on the spectrum that were severe, only because we all know that Autistic children mimic..and my son gets really emotional if he is around a child whom hurts themselves (which is so odd, because he bites himself, screams, you name it he has done it) Well he really freaks out when others do it..well they told me that there was no children in this program that would raise any suggestion that he would not be a perfect fit with them. Well guess what.

My son was not a fit and went backwards almost immediately, he started wetting his pants, they shadowed him in every aspect, I haven't had him connected to my hip like he was when after the 1st week since he was about 5 yrs old. He lost all knowledge, and lets talk about working hard on redirecting him, thats hard work at first but he was easily redirectable before the program, I could not redirect him at all. He wouldn't dress himself, he wouldn't grab his own snack or drink anymore, it was like the struggle and hard work and all of the beatings I had endured over the years was for nothing!!! Well I talked to the center and they said even though he knew his schedule and how to do things, he didnt master them and they all get shadowed..I explained he wets his pants and acts like he doesnt know when to go unless directed. He has been potty trained with very few accidents in a year. He was mild

autistic to severe in just a few weeks and He is big and I was scared to have him in the car. And wanted to cry. He attacts me constantly now, and his sister, better yet he never hit another person besides us, well now he does..he attacted his sisters friend and now he wants to hump everything and everyone. Well needless to say I took him out. They were not happy, but neither was I. I told them in the begining that we will not go backwards and asked them if they would move forward with him and they said oh yes. But when I talked with them after the 2nd week they said that they do this with all the children. They never told me that. So now I am with no services, because this is funded by the state. Well I had a meeting with a service which helps get DHS funding for Illinois and she said that I can get him in a residential. A full time residential. And I am at a loss. I know that I can not handle

him. I am small and little and not that strong. I know that as he gets older that I can not safely do it, especially with my daughter, but I was hoping as we all do that he could stay with me always. Now after his major meldowns and him attacking us constantly I dont know what to do. I figured I had a few more years before this, but now I am considering it now. I feel like I am making a mistake if i do, but what if I make a mistake not taking the full residential. With this state funding is far and few and if I dont get it now, It may be years of waiting like I already waited 3 years for this horrible agency. And I can hardly handle him now, and I can not jeopardize his well being and my daughters, and last mine. Please send advise.

[Guest guest]

I know what you mean Rhonda! It is very hard and I really hope that you will not have to place him and he can stay home with you!StacieSent via BlackBerry by AT&TDate: Fri, 12 Sep 2008 06:31:32 -0700 (PDT)To: <AutismBehaviorProblems >Subject: Re: placement I know. I keep thinking every time and as he gets bigger, what will I do. Actually this morning was not good. But yesterday after school he was fine. He had no meltdowns. Which was wonderful. He just started a new school this year. We just moved, but to a house that he has known for 4 years. And he has not had a meltdown from this new school yet. Thats why I keep telling myself its possible that he can remain in the home, but then it seems when I think that almost immediately he has a meltdown that is powerful. I think I just hope too much and then when this happens I just let myself down, knowing inside that I will not be able to handle him. But he is funny, he loves to joke, he is very smart, he has such a kind heart and loves to help people and is amazing. I just can't image my life with out him. As I am sure all of us do. I think that I hang on because people keep telling me that its the inevidiable that he will be placed, because I can't handle his aggression. I would always be in his life no matter what I could never just place him and that is that. I would have to talk with him, visit, everything. This is very hard. From: tishannepatterson <tishannepatterson@ yahoo.com>Subject: Re: placementTo: AutismBehaviorProbl emsyahoogroups (DOT) comDate: Thursday, September 11, 2008, 8:53 PMMy heart felt thoughts go out to you as a single parent dealing with a family crisis. Being at the helm of all the descisions and especially one about placing your child is tremendous stress. I hope what ever choice you make, you realize you are not alone in your struggle to do whats right as a caring,loving parent. If you do place your son being an active parent by phone and visiting will always be better then an absent parent. You can only do what is right for your family and go from there. It will be hard to cope with either way. I have a son who is autistic and is placed away from home,he is 10. I have a cousin who was deaf. He went to live at a school for the deaf. His family needed those years to learn how to communicate and they spent their years learning to sign while he was gone. He came home for holidays and they sent picture letters often,he grew up away from home. In hollywood the stars have respite,resorts and schools for their children while they are busy with acting careers,rehabs ect. No one ever questions their choices or time away from their children. The best way I found to get the help and support I needed for my family and child with autism when he began attacking us was calling the medics. The ER Dr.s will make that much needed paper trail. The doors for help and services open then. I could never secure what was needed through our pediatrician, behavioral therapist or social workers and programs. The ER Drs can also give you an emergency medicine for violent attacks that will help your child and you to be safe. Ask about a drug called Zidus. Stay away from Lorazapam because your child may loose his inhibitions and become more dangerous to your family or himself. There is always an underlying cause of aggression. It will take plenty of your input and many Dr.s to find the core cause. They may take him inhouse for this time of discovery for tests and observation. Make sure your calls and visits are specifically for autism with aggression against you and your family. The super strength our children get from adrenaline during a rage can make them very strong and it can wear you out and it hurts. Your other child needs a safe place to go or a room with a lock during the most extreme times. I had to learn how to pin my son because I am not big or strong enough to fight him. This was so scarry. I cried and cried after the medics came to help us. It was so hard yet I knew it was the right thing to do,the only thing I could do. No matter what choice you make it will be the best you could do. Also have you applied for social security disability? Your child may be eligible for financial and medical help. If you have a mental health crisis line number call it when ever you need to. Its a paper trail history that will open doors for you and bring you answers. You are not alone and my thoughts and prayers are with you and your family during your hard times and happy ones.Best wishes,Tishanne> From: stacie <hawkie6@... >> Subject: Re: placement> To: AutismBehaviorProbl emsyahoogroups (DOT) com> Date: Thursday, September 11, 2008, 1:34 AM> > > > > Oh my! I am so sorry you are going through this! Where are you at in Illinois? I live in Aurora! What residential place is it that you could send him to?> Stacie > Sent via BlackBerry by AT & T > > ------------ ----> From: "skyzalex" <skyzalexyahoo (DOT) com>> Date: Thu, 11 Sep 2008 02:55:56 -0000> To: <AutismBehaviorProb l emsyahoogroups (DOT) com>> Subject: placement> > > > I was hoping that maybe I can get some support or suggestions, seeing > we all seem to be the only ones to understand our situations. I have > a son whom is almost 8 years old and Autistic. I am single parent and > also have a 11 yr old. I have been fighting for many years for help, > services for him. Well finally there was a partial residential > program that was willing to take him. Then guaranteed that this was > the appropriate program. I also had some friends come with to > meetings, that maybe they would hear things that maybe a desperate > mother may not see, and they would see it in another perspective. > Well my son is high functioning, It took me about 4 years alone, with > bearly much support, lots of trial and error (too many errors!!) but, > finally we would be able to sit down and eat out, go to the stores > and not have to rush as fast as possible, so he wouldn't have a > meltdown and we wouldn't get everything we need, many meltdowns on a > daily basis ect..I am sure you know exactly what I am talking about. > Well he was having maybe two meltdowns a month, and yes they were bad > but only lasted sometimes 15mins and was easily redirectable but hey > thats great and I was happy. Well..he went to a life skills training > program, which he would be home on weekends, holidays, ect. And they > told me he was a perfect fit. I told them that I do not want him with > children on the spectrum that were severe, only because we all know > that Autistic children mimic..and my son gets really emotional if he > is around a child whom hurts themselves (which is so odd, because he > bites himself, screams, you name it he has done it) Well he really > freaks out when others do it..well they told me that there was no > children in this program that would raise any suggestion that he > would not be a perfect fit with them. Well guess what. My son was not > a fit and went backwards almost immediately, he started wetting his > pants, they shadowed him in every aspect, I haven't had him connected > to my hip like he was when after the 1st week since he was about 5 > yrs old. He lost all knowledge, and lets talk about working hard on > redirecting him, thats hard work at first but he was easily > redirectable before the program, I could not redirect him at all. He > wouldn't dress himself, he wouldn't grab his own snack or drink > anymore, it was like the struggle and hard work and all of the > beatings I had endured over the years was for nothing!!! Well I > talked to the center and they said even though he knew his schedule > and how to do things, he didnt master them and they all get > shadowed..I explained he wets his pants and acts like he doesnt know > when to go unless directed. He has been potty trained with very few > accidents in a year. He was mild autistic to severe in just a few > weeks and He is big and I was scared to have him in the car. And > wanted to cry. He attacts me constantly now, and his sister, better > yet he never hit another person besides us, well now he does..he > attacted his sisters friend and now he wants to hump everything and > everyone. Well needless to say I took him out. They were not happy,> > Sent via BlackBerry by AT & T>

[Guest guest]

Hi Rhonda,

I feel sorry tha tyou had thsi experience. Sometimes a program doesn't

realize what impact the environment has on people's functioning. Being

shadowed constantly can be a major stressor for someone who is autistic, and

that may cause them to fall apart and not display the skills that they do

have. Then the staff may think oh he can't do this cause we don't see him

doing it, and shadow him even more. Also indeed hte imitating might be a

problem (it'snot a bad problem for me but I can understand it would be for

someone else), or he gets stressed out from the other children and then

melts down. I have a similar experience at the current place where I am,

which is a locked psychiatric ward (with absolutely no understandign of

autism anyway, so that's another problem): many of the othe rpatients are

manic or psychotic and therefore quite irritable, scream, make noises, etc.

Then I may have a meltdown in response to that, and staff need to manage my

behavior. Well that doesnt'say anything about my behavior in places where

there aren't fifteen other rather unstable patients, etc. Fortunately the

staff here realize this, but it's hard to communicate to other places who

might accept me.

Also re the staff constantly shadowing him, the staff may need to observe

him in order to determine his present level of daily living skills, but if

you know that he's clearly mastered a skill, I would say you should be able

to agree with them that they will not shadow him during tha tskill but check

on him to see fi he's done it correctly, or something. When I went for life

skills training (full-time residential, it was in fact an apartment living

situation - I was 19-21 then), all prospective clietns were also asked about

their starting level of functioning in various areas. I did still have a

hard time talking the staff otu of too much shadowing when not needed, but

at least they knew (from me and a previous facility) my skills in many basic

areas..and then int his case there is even the issue that you have observed

your son for years and are not the client himself (like I was, in which case

I could've said that I mastered a skill when really not knwoing that I did

it incorrectly). They really should have discussed these issues with you

prioer to his admission.

Also I'm disappointed that they wouldnt'give you any information about the

clientele. I understand their point of not violating privacy, but they could

give you a general outline without giving out identifable information. For

example when I went to the life skills/independent living training program,

they did tell me that they used to have more blind/visually impaired clients

but at that moment I was the only blind person in the program and the

majority were mildly intellectually disabled or had survived traumatic brain

injury, so I probably was higher-functioning than them in many respects.

This program is ver individualized (as I said, apartment living for young

adults), so I didn't mind that at the time, but I and my parents would

certainly have minded if I'd been 7-years-old.

Astrid

astrid@...

http://www.astridvanwoerkom.com/

placement

I was hoping that maybe I can get some support or suggestions, seeing

we all seem to be the only ones to understand our situations. I have

a son whom is almost 8 years old and Autistic. I am single parent and

also have a 11 yr old. I have been fighting for many years for help,

services for him. Well finally there was a partial residential

program that was willing to take him. Then guaranteed that this was

the appropriate program. I also had some friends come with to

meetings, that maybe they would hear things that maybe a desperate

mother may not see, and they would see it in another perspective.

Well my son is high functioning, It took me about 4 years alone, with

bearly much support, lots of trial and error (too many errors!!) but,

finally we would be able to sit down and eat out, go to the stores

and not have to rush as fast as possible, so he wouldn't have a

meltdown and we wouldn't get everything we need, many meltdowns on a

daily basis ect..I am sure you know exactly what I am talking about.

Well he was having maybe two meltdowns a month, and yes they were bad

but only lasted sometimes 15mins and was easily redirectable but hey

thats great and I was happy. Well..he went to a life skills training

program, which he would be home on weekends, holidays, ect. And they

told me he was a perfect fit. I told them that I do not want him with

children on the spectrum that were severe, only because we all know

that Autistic children mimic..and my son gets really emotional if he

is around a child whom hurts themselves (which is so odd, because he

bites himself, screams, you name it he has done it) Well he really

freaks out when others do it..well they told me that there was no

children in this program that would raise any suggestion that he

would not be a perfect fit with them. Well guess what. My son was not

a fit and went backwards almost immediately, he started wetting his

pants, they shadowed him in every aspect, I haven't had him connected

to my hip like he was when after the 1st week since he was about 5

yrs old. He lost all knowledge, and lets talk about working hard on

redirecting him, thats hard work at first but he was easily

redirectable before the program, I could not redirect him at all. He

wouldn't dress himself, he wouldn't grab his own snack or drink

anymore, it was like the struggle and hard work and all of the

beatings I had endured over the years was for nothing!!! Well I

talked to the center and they said even though he knew his schedule

and how to do things, he didnt master them and they all get

shadowed..I explained he wets his pants and acts like he doesnt know

when to go unless directed. He has been potty trained with very few

accidents in a year. He was mild autistic to severe in just a few

weeks and He is big and I was scared to have him in the car. And

wanted to cry. He attacts me constantly now, and his sister, better

yet he never hit another person besides us, well now he does..he

attacted his sisters friend and now he wants to hump everything and

everyone. Well needless to say I took him out. They were not happy,

but neither was I. I told them in the begining that we will not go

backwards and asked them if they would move forward with him and they

said oh yes. But when I talked with them after the 2nd week they said

that they do this with all the children. They never told me that. So

now I am with no services, because this is funded by the state. Well

I had a meeting with a service which helps get DHS funding for

Illinois and she said that I can get him in a residential. A full

time residential. And I am at a loss. I know that I can not handle

him. I am small and little and not that strong. I know that as he

gets older that I can not safely do it, especially with my daughter,

but I was hoping as we all do that he could stay with me always. Now

after his major meldowns and him attacking us constantly I dont know

what to do. I figured I had a few more years before this, but now I

am considering it now. I feel like I am making a mistake if i do, but

what if I make a mistake not taking the full residential. With this

state funding is far and few and if I dont get it now, It may be

years of waiting like I already waited 3 years for this horrible

agency. And I can hardly handle him now, and I can not jeopardize his

well being and my daughters, and last mine. Please send advise.

I'm protected by SpamBrave

http://www.spambrave.com/

[Guest guest]

> Why would you take an 8 year old mildly autistic son who has 2 meltdowns a

> month that last 15 minutes and >place him in a residential facility paid

> for by the state?

Some possible reasons (and I'm not speaking for Rhonda here, just offering

my ideas):

1. The child may have other issues with their autism that cannot be

addressed in the regular home/school environment. Meltdowns are not the only

problem an autistic might face. He might have significant social isolation,

anxiety or depression, he might be falling behind on daily living skills

(after all, the program Rhonda put her child into, is supposed to be a life

skills " program), or somethign else. While it wasn't autism-related, I

myself went for part-time residential life skills training at a rehab center

(for the blind, I'm also blind), funded by the state, because I was having

problems with, oh well, life skills. Not even immediate problems, but I

anticipated problems if I didn't go to the program. I was older (19), and my

situation was therefore likely different (I was makign the transition into

adulthood), but just to say, it doesn't require that you first get totally

stuck before you can get into a program. Ideally, children and adults with

disabilities should be able to get the help/training they need *before* the

situation gets totally out-of-control.

2. The school district may have pressured the parent. Sometimes school

districts have their reasosn for not wanting to deal with a particular

child, or have (incorrect) prejudices about tht child's needs, or whatever.

I for example was advised to ontinue full-time special education (funded by

the state) in seventh grade by two different psychologists on grounds that

have little to do with academics (likfe skills, mostly), and no regular

school would accept me with these recommendations.

3. The program may have misrepresented itself, which Rhonda says was the

case in her situation. Sometimes program directors mislead parents or

clients just to get clients so they will get money from the state for (oh

well, that's how I've come to think). This is how the special ed people

worked, too (the first psychologist who advised against regular ed, worked

for the special ed school I attended at the time, and would just love to

have me for a student because it gets them fundign). But even if the

programs aren't malevolent, they may look at your child with a particular

color glasses on, that sees only the part of your child that could fit their

program (or only the part in which the child doesn't fit the program, if

they want to turn him down), so they may say he's a perfect fit on the basis

of a few arbitrary aspects of the child's situation, rather than looking at

the complete picture.

4. The parent may have issues of herown that make it harder to deal with

this child than another parent might. This is not meant to judge the parent,

because the parent's situation does influence the child's situation. A child

lives in a family, and if the family dynamics are not ideal for tha tchild

(for which no-one is to blame!), that may necessitate placement where, if

the family dynamics were different, the child might stay at home.

5. The services options may be different for different families. I for

example don't really desperately need to be in a psych hospital anymore, and

certainly not on the locked ward, but given my services needs, there is no

way I could live (within the outlines of my country's healthcare system)

outside of a 240ghour support setting. All places that I'm eligible for,

have waitign lists, and the open resocialization ward that I was supposed to

go to as an interim, has just turned me down (on unclear groudns, which I

filed a complaint about). The particular healthcare/services sytem in

Rhonda's particular county/state may just necessitate residential placement

if her son's service need is going to be met at all, and that does not say

that residential placement is ideal for Rhonda's son.

Lastly, a parent (or adult autistic seeking services) should not need to

justify their decision like this. I do ask parents about their reasons for

choosing a particular placement, but I do this so that I might be able to

give them information about appropriate alternatives. I am against

unnecessarily restrictive environments, too, but I do realize that

sometimes, within the particular bounds of that person's/family's situation,

it is the only option or hte lesser of two evils. Or maybe there are truly

alternatives, but the parent/adult is not aware of them, and this is not a

character flaw.

Astrid

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Thank you very much for responding. I think that its great to actually get information with someone on the spectrum. You could actually give your perspective on many issues, inwhich us as parents with children can not articulate their feelings. The program viewed him in school and at home for months prior. They knew that he could write, dress, brush his teeth ect. But phs meltdowns would be so extreme and so fast (they didn't last long maybe 15min-35mins, considering the earlier years were hours) that he would take objects like chairs, dishes, whatever and try to attack me with. He would bite me to the point sometimes a tooth may fall out. This happened a few times, he could over power me at times. ph also has a sister which at times he would in a middle of a meltdown just run to find her in the house to attack her. But on the majority he is just the

most wonderful and enjoyable child I have ever known when he has his good days. He also has problems with hurting himself during these times. ph does not understand reality. He is so fixated on the Muppets, he believes these characters are real. When I try to explain that they are pretend he will go off. He will tell me that they are coming over for a party and he will get things ready for them and when they don't show he has a major meltdown. I have to pretend at times to call Jim Henson (which I know whom is not alive) and find out why tehy didn't show. He does not understand cause and effect, and he always has to be right and control every situaltion. Well this program knew this. I wanted him in a program which could help him cope, focus and teaching him more about cause and effect. They said that they could do it. I told him he gets meltdowns and has alot of anxiety around other children whom hurt themselves and can not verbalize and would

not find it appropriate to place him in a program that he would be around this all the time. And they told me time and again that they will focus on these things. They never told me that they would begin from the begining of life skills and then focus on the main goals later, much later. So he began to regress all of the skills he had aquired over the years and it seems like he lost everything. I talked with them and they said that they shadowed him and then in October I can come and train and they will show me how to do it. I said absolutely not will I shadow him..he already knows how to do these things. And now its as if he lost all skills. And I had questioned them on why have they not focused on the goals inwhich we discussed prior to his entrance. They told me that all children no matter what starts from the bottom and works their way up. I told them that they had misinformed me on the true aspect of the program, and that they told me that they

would take him from where he is at and work ahead. Well it got so hard for ph that when he came home on the weekends he would meltdown all day, I mean hours then take a very short break (maybe 10 mins) then go at it again for a few more hours all the way into the next day. I told the program he will not return. He started the program at the end of July and at the end of August I took him out. I had asked him to use his words and tell me why he was doing these things, he said he was too old for the training center and he was mad and angry at me. I found out that all the children in the program was severe and he was the only high functioning child. And they knew that he wouldn't have been in this program if this was the case, but they told me that they couldn't tell me due to confidentiality reasons but "He was a perfect fit." I believed them. But I know I did the right thing by taking him out. He has meltdowns everyday which are hard, because he can

over power me most of the time. I am single and have another child and his father has not been in the picture at all for about two years. ph has not seen him. So after being on waiting lists for three years I trusted the words of this program and now the state just dropped all funding unless its an emergency. So we have no services and depending on what an emergency is we may not have any. So I just will do the best I can for everyone involved and hope his aggression lessens so he does not overpower me to where there is deeper trouble. I hope this may clear up why I wanted him in a program to help him move ahead and have a chance to go as far as he can, but what happened was I trusted a company who promised me and his school that they would move him ahead. Now I get beat up all day long and the damage in the house is horrific and my daughter stays in her room most of the time and said she stays there because of ph. I would never just put him

somewhere for the sake of doing so. I wanted a program that could give him a better chance.

Subject: Re: placementTo: AutismBehaviorProblems Date: Saturday, September 13, 2008, 2:36 PM

Hi Rhonda,I feel sorry tha tyou had thsi experience. Sometimes a program doesn't realize what impact the environment has on people's functioning. Being shadowed constantly can be a major stressor for someone who is autistic, and that may cause them to fall apart and not display the skills that they do have. Then the staff may think oh he can't do this cause we don't see him doing it, and shadow him even more. Also indeed hte imitating might be a problem (it'snot a bad problem for me but I can understand it would be for someone else), or he gets stressed out from the other children and then melts down. I have a similar experience at the current place where I am, which is a locked psychiatric ward (with absolutely no understandign of autism anyway, so that's another problem): many of the othe rpatients are manic or psychotic and therefore quite irritable, scream, make noises, etc. Then I may have a

meltdown in response to that, and staff need to manage my behavior. Well that doesnt'say anything about my behavior in places where there aren't fifteen other rather unstable patients, etc. Fortunately the staff here realize this, but it's hard to communicate to other places who might accept me.Also re the staff constantly shadowing him, the staff may need to observe him in order to determine his present level of daily living skills, but if you know that he's clearly mastered a skill, I would say you should be able to agree with them that they will not shadow him during tha tskill but check on him to see fi he's done it correctly, or something. When I went for life skills training (full-time residential, it was in fact an apartment living situation - I was 19-21 then), all prospective clietns were also asked about their starting level of functioning in various areas. I did still have a hard time

talking the staff otu of too much shadowing when not needed, but at least they knew (from me and a previous facility) my skills in many basic areas..and then int his case there is even the issue that you have observed your son for years and are not the client himself (like I was, in which case I could've said that I mastered a skill when really not knwoing that I did it incorrectly) . They really should have discussed these issues with you prioer to his admission.Also I'm disappointed that they wouldnt'give you any information about the clientele. I understand their point of not violating privacy, but they could give you a general outline without giving out identifable information. For example when I went to the life skills/independent living training program, they did tell me that they used to have more blind/visually impaired clients but at that moment I was the only blind person in the program and

the majority were mildly intellectually disabled or had survived traumatic brain injury, so I probably was higher-functioning than them in many respects. This program is ver individualized (as I said, apartment living for young adults), so I didn't mind that at the time, but I and my parents would certainly have minded if I'd been 7-years-old.Astridastrid@astridvanwoe rkom.comhttp://www.astridva nwoerkom. com/

placementI was hoping that maybe I can get some support or suggestions, seeingwe all seem to be the only ones to understand our situations. I havea son whom is almost 8 years old and Autistic. I am single parent andalso have a 11 yr old. I have been fighting for many years for help,services for him. Well finally there was a partial residentialprogram that was willing to take him. Then guaranteed that this wasthe appropriate program. I also had some friends come with tomeetings, that maybe they would hear things that maybe a desperatemother may not see, and they would see it in another perspective.Well my son is high functioning, It took me about 4 years alone, withbearly much support, lots of trial and error (too many errors!!) but,finally we would be able to sit down and eat out, go to the storesand not have to rush as fast as possible, so he wouldn't have ameltdown and we wouldn't get

everything we need, many meltdowns on adaily basis ect..I am sure you know exactly what I am talking about.Well he was having maybe two meltdowns a month, and yes they were badbut only lasted sometimes 15mins and was easily redirectable but heythats great and I was happy. Well..he went to a life skills trainingprogram, which he would be home on weekends, holidays, ect. And theytold me he was a perfect fit. I told them that I do not want him withchildren on the spectrum that were severe, only because we all knowthat Autistic children mimic..and my son gets really emotional if heis around a child whom hurts themselves (which is so odd, because hebites himself, screams, you name it he has done it) Well he reallyfreaks out when others do it..well they told me that there was nochildren in this program that would raise any suggestion that hewould not be a perfect fit with them. Well guess what. My son was

nota fit and went backwards almost immediately, he started wetting hispants, they shadowed him in every aspect, I haven't had him connectedto my hip like he was when after the 1st week since he was about 5yrs old. He lost all knowledge, and lets talk about working hard onredirecting him, thats hard work at first but he was easilyredirectable before the program, I could not redirect him at all. Hewouldn't dress himself, he wouldn't grab his own snack or drinkanymore, it was like the struggle and hard work and all of thebeatings I had endured over the years was for nothing!!! Well Italked to the center and they said even though he knew his scheduleand how to do things, he didnt master them and they all getshadowed..I explained he wets his pants and acts like he doesnt knowwhen to go unless directed. He has been potty trained with very fewaccidents in a year. He was mild autistic to severe in just a

fewweeks and He is big and I was scared to have him in the car. Andwanted to cry. He attacts me constantly now, and his sister, betteryet he never hit another person besides us, well now he does..heattacted his sisters friend and now he wants to hump everything andeveryone. Well needless to say I took him out. They were not happy,but neither was I. I told them in the begining that we will not gobackwards and asked them if they would move forward with him and theysaid oh yes. But when I talked with them after the 2nd week they saidthat they do this with all the children. They never told me that. Sonow I am with no services, because this is funded by the state. WellI had a meeting with a service which helps get DHS funding forIllinois and she said that I can get him in a residential. A fulltime residential. And I am at a loss. I know that I can not handlehim. I am small and little and not that

strong. I know that as hegets older that I can not safely do it, especially with my daughter,but I was hoping as we all do that he could stay with me always. Nowafter his major meldowns and him attacking us constantly I dont knowwhat to do. I figured I had a few more years before this, but now Iam considering it now. I feel like I am making a mistake if i do, butwhat if I make a mistake not taking the full residential. With thisstate funding is far and few and if I dont get it now, It may beyears of waiting like I already waited 3 years for this horribleagency. And I can hardly handle him now, and I can not jeopardize hiswell being and my daughters, and last mine. Please send advise.I'm protected by SpamBravehttp://www.spambrav e.com/