Re: A.S. not A.S.

May 24, 2009

Our 15 1/2 yr old is not able to safely reside in the family home at this time (it's been like this since age 10).

He is living in a center right now that doesn't believe he has A.S. but the truth is, the simple fact he DOES is

driving him literally insane in that setting. Because one has to utilize the help of the system, and there are so

few places that specialize in A.S. (the one about 3 hours from our home won't take him because he is also a

type I diabetic which STINKS for him and us!)......that there really are not many options. We feel he has been

progressing where he is, but now, they are trying to make him NOT A.S. / expecting him to conform to their little

box, and that just isn't going to happen, so his hand movements are up, he has been running away (literally walks out the

door to walk around but comes back because he cannot stand the noise or kids arguing, etc. ).

Last week, he was getting kicked and punched by a peer, never crossed his mind to yell at staff for help, once he was sick of it,

he took his belt off and hit the peer (requiring him to need staples in his face) but the peer then took the belt and

started beating our son with it until staff finally noticed and stopped things / took other peer to hospital for staples. It is

frustrating to say the least because how can one have Autism one day, not the next? No one that has ever worked with him

or us the past five years gets it, and is just as frustrated and angry as we are / feels bad for us. Have any suggestions

at all on what we can do? I am tired of being the crazy mom or dad with the support of everyone on the team BUT the place he

lives (the DHS worker, attorney for our son, home workers, etc., all side with us / refuse to deny the diagnoses; it makes NO SENSE

to them either but in all their efforts, this bold headed psychiatrist just won't listen to us, period!!!!).............frustrating!

Thanks.

Ruthie & Dolezal

Mom to two with A.S. (15 and 8), one normal 6 year old, and baby to be delivered 10 days from TODAY).....

May 24, 2009

Aw, Ruthie, I had been wondering where you were. I thought

maybe you had already had the new baby. I don’t have any suggestions but will

keep your family in my prayers.

From:

[mailto: ] On Behalf Of BRYAN DOLEZAL

Sent: May 24, 2009 07:35 AM

Subject: RE: ( ) A.S. not A.S.

Our 15 1/2 yr old is not able to safely reside in the family home at this

time (it's been like this since age 10).

He is living in a center right now that doesn't believe he has A.S. but the

truth is, the simple fact he DOES is

driving him literally insane in that setting. Because one has to utilize

the help of the system, and there are so

few places that specialize in A.S. (the one about 3 hours from our home won't

take him because he is also a

type I diabetic which STINKS for him and us!)......that there really are not

many options. We feel he has been

progressing where he is, but now, they are trying to make him NOT A.S. /

expecting him to conform to their little

box, and that just isn't going to happen, so his hand movements are up, he has

been running away (literally walks out the

door to walk around but comes back because he cannot stand the noise or kids

arguing, etc. ).

Last week, he was getting kicked and punched by a peer, never crossed his

mind to yell at staff for help, once he was sick of it,

he took his belt off and hit the peer (requiring him to need staples in his

face) but the peer then took the belt and

started beating our son with it until staff finally noticed and stopped things

/ took other peer to hospital for staples. It is

frustrating to say the least because how can one have Autism one day, not the

next? No one that has ever worked with him

or us the past five years gets it, and is just as frustrated and angry as we

are / feels bad for us. Have any suggestions

at all on what we can do? I am tired of being the crazy mom or dad with

the support of everyone on the team BUT the place he

lives (the DHS worker, attorney for our son, home workers, etc., all side with

us / refuse to deny the diagnoses; it makes NO SENSE

to them either but in all their efforts, this bold headed psychiatrist

just won't listen to us, period!!!!).............frustrating!

Thanks.

Ruthie & Dolezal

Mom to two with A.S. (15 and 8), one normal 6 year old, and baby to be

delivered 10 days from TODAY).....

May 24, 2009

Bless you and your family, Ruthie… this can’t be easy on any of

you. I don’t have much to offer, but just wanted to let you know you and your

family are in my prayers, and I hope you are able to figure things out for the

best interests of ALL of you. Good luck on that upcoming new little one Find

time to look after YOU (not always easy, but so important!)

All my best,

=)

From:

[mailto: ] On

Behalf Of BRYAN DOLEZAL

Sent: Sunday, May 24, 2009 10:05 AM

Subject: RE: ( ) A.S. not A.S.

Our 15 1/2 yr old is not able to safely reside in the family home at this

time (it's been like this since age 10).

He is living in a center right now that doesn't believe he has A.S. but the

truth is, the simple fact he DOES is

driving him literally insane in that setting. Because one has to utilize

the help of the system, and there are so

few places that specialize in A.S. (the one about 3 hours from our home won't

take him because he is also a

type I diabetic which STINKS for him and us!)......that there really are not

many options. We feel he has been

progressing where he is, but now, they are trying to make him NOT A.S. / expecting

him to conform to their little

box, and that just isn't going to happen, so his hand movements are up, he has

been running away (literally walks out the

door to walk around but comes back because he cannot stand the noise or kids

arguing, etc. ).

Last week, he was getting kicked and punched by a peer, never crossed his

mind to yell at staff for help, once he was sick of it,

he took his belt off and hit the peer (requiring him to need staples in his

face) but the peer then took the belt and

started beating our son with it until staff finally noticed and stopped things

/ took other peer to hospital for staples. It is

frustrating to say the least because how can one have Autism one day, not the

next? No one that has ever worked with him

or us the past five years gets it, and is just as frustrated and angry as we

are / feels bad for us. Have any suggestions

at all on what we can do? I am tired of being the crazy mom or dad with

the support of everyone on the team BUT the place he

lives (the DHS worker, attorney for our son, home workers, etc., all side with

us / refuse to deny the diagnoses; it makes NO SENSE

to them either but in all their efforts, this bold headed psychiatrist

just won't listen to us, period!!!!).............frustrating!

Thanks.

Ruthie & Dolezal

Mom to two with A.S. (15 and 8), one normal 6 year old, and baby to be

delivered 10 days from TODAY).....

May 24, 2009

Oh, Dear Ruthie,

My heart cries for you and your family.I don't know the whole story why you son is where he is ....but I will pray for all of you. The place does not sound right for him. I don't like the fact that the kids are picking on him and hitting him to the point he took his belt and hit the boy back....where is the staff???? Is there anywhere else he can go? I don't understand why they are saying your son is not A.S. when you have all the other who say he is....did they do a psych. eval. on him?????

I had questioned the psychiatrist about my son's dx....because my son is not the "typical". My son tries to be very social....but he has many of the signs or symptoms of AS. Anyways he told me...AS is basically lack of communcation function or deficiency...the spectrum is very WIDE...and not all fix neatly into the circle...if you know what I mean...so I don't think they know what they are talking about. Some kids are severe and others are not....my son doesn't do a lot of what others kids do but he has some of the symptoms...so those people probably don't even know what they are talking about.

Can you move him? Find another place ...even if it is further away???? In the mean time I am sending you hugs and kisses and lots of prayers.

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: O'Brien <nicole.obrien@...>Subject: RE: ( ) A.S. not A.S. Date: Sunday, May 24, 2009, 8:39 PM

Bless you and your family, Ruthieâ€¦ this canâ€™t be easy on any of you. I donâ€™t have much to offer, but just wanted to let you know you and your family are in my prayers, and I hope you are able to figure things out for the best interests of ALL of you. Good luck on that upcoming new little one Find time to look after YOU (not always easy, but so important!)

All my best,

=)

From: [mailto:AspergersSu pport@group s.com] On Behalf Of BRYAN DOLEZALSent: Sunday, May 24, 2009 10:05 AM Subject: RE: ( ) A.S. not A.S.

Our 15 1/2 yr old is not able to safely reside in the family home at this time (it's been like this since age 10).He is living in a center right now that doesn't believe he has A.S. but the truth is, the simple fact he DOES isdriving him literally insane in that setting. Because one has to utilize the help of the system, and there are sofew places that specialize in A.S. (the one about 3 hours from our home won't take him because he is also atype I diabetic which STINKS for him and us!)......that there really are not many options. We feel he has beenprogressing where he is, but now, they are trying to make him NOT A.S. / expecting him to conform to their littlebox, and that just isn't going to happen, so his hand movements are up, he has been running away (literally walks out thedoor to walk around but comes back because he cannot stand the noise or kids arguing, etc. ). Last week, he

was getting kicked and punched by a peer, never crossed his mind to yell at staff for help, once he was sick of it,he took his belt off and hit the peer (requiring him to need staples in his face) but the peer then took the belt and started beating our son with it until staff finally noticed and stopped things / took other peer to hospital for staples. It isfrustrating to say the least because how can one have Autism one day, not the next? No one that has ever worked with himor us the past five years gets it, and is just as frustrated and angry as we are / feels bad for us. Have any suggestionsat all on what we can do? I am tired of being the crazy mom or dad with the support of everyone on the team BUT the place helives (the DHS worker, attorney for our son, home workers, etc., all side with us / refuse to deny the diagnoses; it makes NO SENSE to them either but in all their efforts, this bold

headed psychiatrist just won't listen to us, period!!!!). ......... ...frustrating! Thanks. Ruthie & DolezalMom to two with A.S. (15 and 8), one normal 6 year old, and baby to be delivered 10 days from TODAY).....

May 25, 2009

OMG....all the symptom you said are part of the syndrome...it does hit you smack in the face...why don't they get it? Why is he there? May I ask?

My concern for him is that the staff seems to LAX....make a stink about the kids picking on him and that he had to start fighting back because the kids were picking on him. I would bring this out...point out how UNSAFE this is for your son...that would be my biggest concern..

Tell his case manager that he needs out of there and placed somewhere SAFE...tell them that you will SUE if anything happens to your son. I don't mean to scare you but they are not listening and sometimes you just need to threaten them with a lawsuit to get them to wake up.

Hugs a million times over and over

xoxoxo

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: O'Brien <nicole.obrien@ eastlink. ca>Subject: RE: ( ) A.S. not A.S. Date: Sunday, May 24, 2009, 8:39 PM

Bless you and your family, Ruthieâ€¦ this canâ€™t be easy on any of you. I donâ€™t have much to offer, but just wanted to let you know you and your family are in my prayers, and I hope you are able to figure things out for the best interests of ALL of you. Good luck on that upcoming new little one Find time to look after YOU (not always easy, but so important!)

All my best,

=)

From: [mailto:AspergersSu pport@group s.com] On Behalf Of BRYAN DOLEZALSent: Sunday, May 24, 2009 10:05 AM Subject: RE: ( ) A.S. not A.S.

Our 15 1/2 yr old is not able to safely reside in the family home at this time (it's been like this since age 10).He is living in a center right now that doesn't believe he has A.S. but the truth is, the simple fact he DOES isdriving him literally insane in that setting. Because one has to utilize the help of the system, and there are sofew places that specialize in A.S. (the one about 3 hours from our home won't take him because he is also atype I diabetic which STINKS for him and us!)......that there really are not many options. We feel he has beenprogressing where he is, but now, they are trying to make him NOT A.S. / expecting him to conform to their littlebox, and that just isn't going to happen, so his hand movements are up, he has been running away (literally walks out thedoor to walk around but comes back because he cannot stand the noise or kids arguing, etc. ). Last week, he

was getting kicked and punched by a peer, never crossed his mind to yell at staff for help, once he was sick of it,he took his belt off and hit the peer (requiring him to need staples in his face) but the peer then took the belt and started beating our son with it until staff finally noticed and stopped things / took other peer to hospital for staples. It isfrustrating to say the least because how can one have Autism one day, not the next? No one that has ever worked with himor us the past five years gets it, and is just as frustrated and angry as we are / feels bad for us. Have any suggestionsat all on what we can do? I am tired of being the crazy mom or dad with the support of everyone on the team BUT the place helives (the DHS worker, attorney for our son, home workers, etc., all side with us / refuse to deny the diagnoses; it makes NO SENSE to them either but in all their efforts, this bold

headed psychiatrist just won't listen to us, period!!!!). ......... ...frustrating! Thanks. Ruthie & DolezalMom to two with A.S. (15 and 8), one normal 6 year old, and baby to be delivered 10 days from TODAY).....

May 25, 2009

>

> We are advocating to get him out of there but his DHS worker is not ready to

yet; she is still fighting

>

> for him in there; we love him being close, just that they are such horrible

communicators, and not willing

>

> to accept FACT he has A.S. in the first place;

Hi Ruthie; I remember you from before. Can't forget a name like yours. I

just wanted to wish you luck. Sounds like your son would be better off at home

with a good IEP in the local school. And it sounds from your other son's

experience that he could get that, right? Is that what you are thinking? Maybe

you will just have to be patient and carefully jump through all the DHS worker's

hoops to get him out as soon as possible.

Ruth

May 25, 2009

absolutely NOT; he cannot live at home safely; he is a danger to himself and others OFTEN, and we just

cannot have him home anymroe right now; and, he does not have an IEP or a 504 with his 12 diagnosis including Type I

diabetes; have spent over $10,000 just in lawyer fees to try for 'em; spent another school year trying and fighting....even though

he runs from school 3-6 times a month, can't get one; he does that because of the environment and overwhelmed, but no, we do

not want him home; we fought like HECK to get him in to the system....he is legally mentally ill and when those parts of him come

over, he can be off a day to months and months, and cannot be in the family home unless we want to hire people to stay up 24/7,,,,,,,,

Ruthie

From: me2ruth@...Date: Mon, 25 May 2009 14:15:58 +0000Subject: Re: ( ) A.S. not A.S.

>> We are advocating to get him out of there but his DHS worker is not ready to yet; she is still fighting> > for him in there; we love him being close, just that they are such horrible communicators, and not willing> > to accept FACT he has A.S. in the first place; Hi Ruthie; I remember you from before. Can't forget a name like yours. I just wanted to wish you luck. Sounds like your son would be better off at home with a good IEP in the local school. And it sounds from your other son's experience that he could get that, right? Is that what you are thinking? Maybe you will just have to be patient and carefully jump through all the DHS worker's hoops to get him out as soon as possible.Ruth

May 25, 2009

How old is your son???? I can't believe that the state won't do anything....he sounds so violent and I too would be frightened. Did you call the State Assistance office? Does he have a medical card? My son does. What about MH/MR? There has to be someone that can help you....did you call you local state representative? He/she may have some ideas. You case sounds so awful...there must be some place for him as he is not funcitoning well at home and I fear for your safety as well as the emotional state of all you!!!!

Jan

I will pray for you and your family also!

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

absolutely NOT; he cannot live at home safely; he is a danger to himself and others OFTEN, and we justcannot have him home anymroe right now; and, he does not have an IEP or a 504 with his 12 diagnosis including Type Idiabetes; have spent over $10,000 just in lawyer fees to try for 'em; spent another school year trying and fighting.... even thoughhe runs from school 3-6 times a month, can't get one; he does that because of the environment and overwhelmed, but no, we donot want him home; we fought like HECK to get him in to the system....he is legally mentally ill and when those parts of him comeover, he can be off a day to months and months, and cannot be in the family home unless we want to hire people to stay up 24/7,,,,,,,, Ruthie

From: me2ruth (DOT) comDate: Mon, 25 May 2009 14:15:58 +0000Subject: Re: ( ) A.S. not A.S.

>> We are advocating to get him out of there but his DHS worker is not ready to yet; she is still fighting> > for him in there; we love him being close, just that they are such horrible communicators, and not willing> > to accept FACT he has A.S. in the first place; Hi Ruthie; I remember you from before. Can't forget a name like yours. I just wanted to wish you luck. Sounds like your son would be better off at home with a good IEP in the local school. And it sounds from your other son's experience that he could get that, right? Is that what you are thinking? Maybe you will just have to be patient and carefully jump

through all the DHS worker's hoops to get him out as soon as possible.Ruth

May 25, 2009

I hope I didn't upset you...when I said SUE....I don't know what DHS is but i was and am concerned by when you said he was being hit and finally had to resort to his belt. I feel there is a lack of staff or control....how did they not see this...that is all I meant...sorry if I offended you.

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: O'Brien <nicole.obrien@ eastlink. ca>Subject: RE: ( ) A.S. not A.S. Date: Sunday, May 24, 2009, 8:39 PM

Bless you and your family, Ruthieâ€¦ this canâ€™t be easy on any of you. I donâ€™t have much to offer, but just wanted to let you know you and your family are in my prayers, and I hope you are able to figure things out for the best interests of ALL of you. Good luck on that upcoming new little one Find time to look after YOU (not always easy, but so important!)

All my best,

=)

From: [mailto:AspergersSu pport@group s.com] On Behalf Of BRYAN DOLEZALSent: Sunday, May 24, 2009 10:05 AM Subject: RE: ( ) A.S. not A.S.

Our 15 1/2 yr old is not able to safely reside in the family home at this time (it's been like this since age 10).He is living in a center right now that doesn't believe he has A.S. but the truth is, the simple fact he DOES isdriving him literally insane in that setting. Because one has to utilize the help of the system, and there are sofew places that specialize in A.S. (the one about 3 hours from our home won't take him because he is also atype I diabetic which STINKS for him and us!)......that there really are not many options. We feel he has beenprogressing where he is, but now, they are trying to make him NOT A.S. / expecting him to conform to their littlebox, and that just isn't going to happen, so his hand movements are up, he has been running away (literally walks out thedoor to walk around but comes back because he cannot stand the noise or kids arguing, etc. ). Last week, he

was getting kicked and punched by a peer, never crossed his mind to yell at staff for help, once he was sick of it,he took his belt off and hit the peer (requiring him to need staples in his face) but the peer then took the belt and started beating our son with it until staff finally noticed and stopped things / took other peer to hospital for staples. It isfrustrating to say the least because how can one have Autism one day, not the next? No one that has ever worked with himor us the past five years gets it, and is just as frustrated and angry as we are / feels bad for us. Have any suggestionsat all on what we can do? I am tired of being the crazy mom or dad with the support of everyone on the team BUT the place helives (the DHS worker, attorney for our son, home workers, etc., all side with us / refuse to deny the diagnoses; it makes NO SENSE to them either but in all their efforts, this bold

headed psychiatrist just won't listen to us, period!!!!). ......... ...frustrating! Thanks. Ruthie & DolezalMom to two with A.S. (15 and 8), one normal 6 year old, and baby to be delivered 10 days from TODAY).....

May 25, 2009

Mack will be 17 in September. He does qualify for Office for Citizens with Disabilities, but so far all they have offered is a stipend for us to pay $6/hr for someone to give us 21 hours if respite a week. We have not used it because agencies want $15/hr minimum & even more when they hear about the violence. Besides they want to be paid directly from OCDD or Medicaid waiver. Mack got the AS diagnosis 2 years ago & the waiver waiting list is 12 years.He is also on waiting lists for group homes, but by the time his name comes up for an adolescent home, he will be 18 & need an adult home. Who knows how long that list is.My husband is supposed to start making more phone calls this week. I have been the one running the show for the last 6 years & on my doctor's advice have removed myself from it. I hang out in my bedroom with the door locked if my husband is not home. I feel like a prisoner here which is why I am considering finding an apartment nearby as an oasis for myself!We can use all the prayers we can get. Sent from my iPhoneBlessings, DonnaOn May 25, 2009, at 2:20 PM, rushen janice <jrushen@...> wrote:

How old is your son???? I can't believe that the state won't do anything....he sounds so violent and I too would be frightened. Did you call the State Assistance office? Does he have a medical card? My son does. What about MH/MR? There has to be someone that can help you....did you call you local state representative? He/she may have some ideas. You case sounds so awful...there must be some place for him as he is not funcitoning well at home and I fear for your safety as well as the emotional state of all you!!!!

Jan

I will pray for you and your family also!

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

absolutely NOT; he cannot live at home safely; he is a danger to himself and others OFTEN, and we justcannot have him home anymroe right now; and, he does not have an IEP or a 504 with his 12 diagnosis including Type Idiabetes; have spent over $10,000 just in lawyer fees to try for 'em; spent another school year trying and fighting.... even thoughhe runs from school 3-6 times a month, can't get one; he does that because of the environment and overwhelmed, but no, we donot want him home; we fought like HECK to get him in to the system....he is legally mentally ill and when those parts of him comeover, he can be off a day to months and months, and cannot be in the family home unless we want to hire people to stay up 24/7,,,,,,,, Ruthie

From: me2ruth (DOT) comDate: Mon, 25 May 2009 14:15:58 +0000Subject: Re: ( ) A.S. not A.S.

>> We are advocating to get him out of there but his DHS worker is not ready to yet; she is still fighting> > for him in there; we love him being close, just that they are such horrible communicators, and not willing> > to accept FACT he has A.S. in the first place; Hi Ruthie; I remember you from before. Can't forget a name like yours. I just wanted to wish you luck. Sounds like your son would be better off at home with a good IEP in the local school. And it sounds from your other son's experience that he could get that, right? Is that what you are thinking? Maybe you will just have to be patient and carefully jump

through all the DHS worker's hoops to get him out as soon as possible.Ruth

May 25, 2009

First, Donna....we have 'similar' stories.... IS biologically mine, was every form of abused by his bio-father,

so he has all fo that on top of AD, Type I diabetes, PTSD (probable), Dysnomia, Depression, Dyslexia, Processing issues,

ADHD, memory problems, anxiety, abuse of child, family relationship issues, sensory problems, vision issues, and the like!

I guess if you can afford to PAY for residential and stuff, that is okay for you; if you can afford it, I would

be looking in to the place specifically for kids with A.S. then in Cortdelane, Idaho-----your step-son sounds like

our son.....our son has been in and out of the system since 10 years of age, resided in PMIC for 19 months, then

residential for a year, with 3 hospitalizations leading up to that (but we commited him, and then the state steps in

and pays because WE CANNOT AFFORD TO PAY!)...........he came home for 19 months, and was on the MHW (we are

in Iowa; wait was about 3 months at the time; it is about a year right now; I fill out paperwork bi-monthly so if he is

in treatment when his name is up, he is on the list again not too terribly far out)........Our son will be getting adult services,

and I have been assured there is NO 12 year waiting list here, but again, we have our son in the system already; his worker

is already working on it. WE WORK TOGETHER; we have had psyche evals, done all that, and she knows we are amazing, so

we work TOGETHER now, and she knows he cannot come home.

To finish our son's history, he then did shelter on and off and was in 59 days; our worker MADE us bring him home to keep

from loosing his waiver; he made it HELL but made it about 2 more months at home before landing at shelter again, 2 days

later, in the hospital (about 5th time in less than year at that point) and we were told to commit him again, so we did, and

he went to MHI (mental health institute----most strict setting next to prison). From there, he went residential again, and that

is where he is now. No PMIC'S would take him then but this residential place would, so he is there; he CAN go PMIC again now; he

has done excellent there / made HUGE improvements through MHI; only issue we feel left is fact this place DENIES he has AS which STINKS

for him and is not meeting his needs because of that.

As for how you get the help, you press charges, you have the police escort him to the hospital; when there is abuse in the home, he

needs to go there. You take him to the shelter; then professionals are witnesses, and when he runs from there, etc., the records grow,

and in our case, our son ended up in the hospital. In the hospital, our son told the psychiatrist he has had for 4 years now that he was

going to kill him (and much worse than that) so we had no problems progressing. We did have problems getting DHS to accept our

case, as they want him to stay home because we are great parents, have a great home, ladaladala..........we have 2 young sons

in the home, and his abuses them BESIDES us, and we just keep fighting, fighting and fighting. Our son has DEATH PLANS in details for us

when he is angry, so our worker has NO PLANS FOR HIM TO EVER BE IN SOCIETY, unsupervised, or home to live again at this time (and is

100 percent committed to finally keeping our family and us safe!!!!).

The best thing you can do is advocate for yourselves. Fact you state you cannot press charges for threats is completely untrue as far

as I know; and it can get him committed / put in to a more strict, immediate hospitalization stay (like MHI---3 months is the average stay) for

SURE!!!!! When you put him in the hospital, you go to the court, tell them you want to fill out committal papers, and do it!!!! A judge hears your

case, and you share the main safety concerns but in the paperwork and verbally you must say the following phrase: JOHNNY is a danger to

himself and others...........word it any other way, sugar coat it, and JOHNNY will be coming home with YOU again!

YOU ARE NOT ALONE, and that is why the battle is SOOOOOOOOO hard. Your son is mentally ill (it sounds like and I believe professionals would

support that with all the diagnoses) and this is what mental illness looks like; add A.S. to it all, and we just have a mess-----there is life after

it all but they are our children regardless of where they live............I know that for sure...........we provide all my son's things, clothes (even though

he gets a clothing allowance through DHS, etc.----we don't utilize DHS for anything, in our opinions, other than services-----we just cannot have

him abusing us in the home, destroying our property, making it so we can not work or hold down jobs, etc; he is more than anyone can handle on their

own safely or in the home, PERIOD. He needs constant supervision, and we cannot do that.

YOU NEED TO TELL THE PEOPLE YOU TALK WITH THAT YOU ARE CONTEMPLATING MOVING OUT, YOU ARE AFRAID HE IS GOING TO KILL YOU,

HE WOULD HAVE KILLED YOU IF YOUR SON WERE NOT HOME TO CALL POLICE AND MAKE HIM STOP STRANGLING YOU, OVER AND OVER AND OVER. Should NOT be like that but that is reality.......................you HAVE TO DO THAT THOUGH. In fact, I would call DHS myself, and insist

upon talking with a worker and get the ball rolling but you really need the commital, shelter reports, everything you can get to get them

motivated to take your case on.

GOOD LUCK, and hang in there. I know it is tough. Also, do things always for you, and stay sane. If you appear the least bit like you are loosing your mind, it will become all about you, and the focus shifts to YOU instead of the child, and this child needs help. GOOD LUCK

Ruthie Dolezal

From: donnalmoore@...Date: Mon, 25 May 2009 15:22:51 -0500Subject: Re: ( ) A.S. not A.S.

Mack will be 17 in September. He does qualify for Office for Citizens with Disabilities, but so far all they have offered is a stipend for us to pay $6/hr for someone to give us 21 hours if respite a week. We have not used it because agencies want $15/hr minimum & even more when they hear about the violence. Besides they want to be paid directly from OCDD or Medicaid waiver. Mack got the AS diagnosis 2 years ago & the waiver waiting list is 12 years.

He is also on waiting lists for group homes, but by the time his name comes up for an adolescent home, he will be 18 & need an adult home. Who knows how long that list is.

My husband is supposed to start making more phone calls this week. I have been the one running the show for the last 6 years & on my doctor's advice have removed myself from it. I hang out in my bedroom with the door locked if my husband is not home. I feel like a prisoner here which is why I am considering finding an apartment nearby as an oasis for myself!

We can use all the prayers we can get.

Sent from my iPhone

Blessings, Donna

On May 25, 2009, at 2:20 PM, rushen janice <jrushen > wrote:

How old is your son???? I can't believe that the state won't do anything....he sounds so violent and I too would be frightened. Did you call the State Assistance office? Does he have a medical card? My son does. What about MH/MR? There has to be someone that can help you....did you call you local state representative? He/she may have some ideas. You case sounds so awful...there must be some place for him as he is not funcitoning well at home and I fear for your safety as well as the emotional state of all you!!!!

Jan

I will pray for you and your family also!

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

absolutely NOT; he cannot live at home safely; he is a danger to himself and others OFTEN, and we justcannot have him home anymroe right now; and, he does not have an IEP or a 504 with his 12 diagnosis including Type Idiabetes; have spent over $10,000 just in lawyer fees to try for 'em; spent another school year trying and fighting.... even thoughhe runs from school 3-6 times a month, can't get one; he does that because of the environment and overwhelmed, but no, we donot want him home; we fought like HECK to get him in to the system....he is legally mentally ill and when those parts of him comeover, he can be off a day to months and months, and cannot be in the family home unless we want to hire people to stay up 24/7,,,,,,,, Ruthie

From: me2ruth (DOT) comDate: Mon, 25 May 2009 14:15:58 +0000Subject: Re: ( ) A.S. not A.S.

>> We are advocating to get him out of there but his DHS worker is not ready to yet; she is still fighting> > for him in there; we love him being close, just that they are such horrible communicators, and not willing> > to accept FACT he has A.S. in the first place; Hi Ruthie; I remember you from before. Can't forget a name like yours. I just wanted to wish you luck. Sounds like your son would be better off at home with a good IEP in the local school. And it sounds from your other son's experience that he could get that, right? Is that what you are thinking? Maybe you will just have to be patient and carefully jump through all the DHS worker's hoops to get him out as soon as possible.Ruth

May 25, 2009

I was NOT offended in the least; in fact, we agree 100 percent with you

about being PO'ed about our son having to use the belt; we are MORE

frustrated with the fact that he has A.S. and the fact to scream for staff,

help is not in his thought process....so that is awful! DHS, which I explained

more in the original post is Department of Human Services in Iowa, KS it is

Social and Rehabilitation Services, it is where you go for food stamps, waivers,

child care assistance and programming, call for child and adult abuse, that place

in YOUR state. We fought HARD to get our son in to the state's custody for

services / funding source for programming; we cannot afford to private pay (it is about

$200 per day and no insurance pays for any of it here anyway---someone else stated

they pay what insurance doesn't but we don't have the luxary; our insurance pays for meds,

and is still PRIMARY insurance but it does NOT pay for our son's treatment. At this time,

his DHS worker is not planning on him leaving treatment; we are working on adult living for him

because he doesn't take meds nor remember to do it on his own, etc. Since age 10, he just

keeps deteriorating and deteriorating.

The hardest part is that this weekend, he lost home visits; I am 100 percent bed rest but our DHS

worker agreed we both needed to go, so we have to pay sitters to watch our 2 young sons, and 11 days

before our baby is born, I WENT WITH MY HUBBY ANYWAY to see him, and we saw the 15-30 year old son

this weekend; could go right now, and he may be our 2 year old version of himself...........call this second, and

talk with a 30 year old for a few minutes and end with the five year old; so we never know what we are going to get;

it is hard to leave him there when you see the older him; you just want to love him, hug and kiss 'em, and

bring him home and love 'em; reality is, he could be beating or killing someone with his mouth, actions, or words in a few

minutes, days, or weeks. So, it is very, very hard, as like MOST real parents, my kids are everything to me, and I never in

a million years believed I WOULD NOT BE RAISING THEM MYSELF, but we just cannot do so safely; that is a hard thing

to handle but we are amazing at it now; very used to it. But, I love and have a special bond with this child that I don't have

with the other children...............I also KNOW before they call me when things are wrong (MOST OF THE TIME); sometimes I

call them before they call me.........I just refuse to give up, but I do a lot of hard work on myself to keep myself sane; EVERY

DAY I have a five minutes of sanity (a bath or extremely hot and relaxing shower for example); I MUST do this.......and I

find time to do things for me; same with my husband...............it is HARD but much better than when I was a single mom; IT WAS

NEARLY IMPOSSIBLE THEN.

Also, my hubby and me also do a lot of dating, getting sitters for the boys, and when we cannot afford it, we can, do, and must! Sometimes,

we stay home and do nothing but at least we are home, in our bedroom watching a movie or something and the kids (and sitter) know it is

our date.............sad, but movies and dinner out can be ridiculous, even at Mc's these days! So, that is something I strongly suggest!

We were NOT offended by your comments though; TAKES A LOT FOR THAT TO HAPPEN FOR ME!!!!

Ruthie

From: jrushen@...Date: Mon, 25 May 2009 12:28:37 -0700Subject: RE: ( ) A.S. not A.S.

I hope I didn't upset you...when I said SUE....I don't know what DHS is but i was and am concerned by when you said he was being hit and finally had to resort to his belt. I feel there is a lack of staff or control....how did they not see this...that is all I meant...sorry if I offended you.

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: O'Brien <nicole.obrien@ eastlink. ca>Subject: RE: ( ) A.S. not A.S. Date: Sunday, May 24, 2009, 8:39 PM

Bless you and your family, Ruthie… this can’t be easy on any of you. I don’t have much to offer, but just wanted to let you know you and your family are in my prayers, and I hope you are able to figure things out for the best interests of ALL of you. Good luck on that upcoming new little one Find time to look after YOU (not always easy, but so important!)

All my best,

=)

From: [mailto:AspergersSu pport@group s.com] On Behalf Of BRYAN DOLEZALSent: Sunday, May 24, 2009 10:05 AM Subject: RE: ( ) A.S. not A.S.

Our 15 1/2 yr old is not able to safely reside in the family home at this time (it's been like this since age 10).He is living in a center right now that doesn't believe he has A.S. but the truth is, the simple fact he DOES isdriving him literally insane in that setting. Because one has to utilize the help of the system, and there are sofew places that specialize in A.S. (the one about 3 hours from our home won't take him because he is also atype I diabetic which STINKS for him and us!)......that there really are not many options. We feel he has beenprogressing where he is, but now, they are trying to make him NOT A.S. / expecting him to conform to their littlebox, and that just isn't going to happen, so his hand movements are up, he has been running away (literally walks out thedoor to walk around but comes back because he cannot stand the noise or kids arguing, etc. ). Last week, he was getting kicked and punched by a peer, never crossed his mind to yell at staff for help, once he was sick of it,he took his belt off and hit the peer (requiring him to need staples in his face) but the peer then took the belt and started beating our son with it until staff finally noticed and stopped things / took other peer to hospital for staples. It isfrustrating to say the least because how can one have Autism one day, not the next? No one that has ever worked with himor us the past five years gets it, and is just as frustrated and angry as we are / feels bad for us. Have any suggestionsat all on what we can do? I am tired of being the crazy mom or dad with the support of everyone on the team BUT the place helives (the DHS worker, attorney for our son, home workers, etc., all side with us / refuse to deny the diagnoses; it makes NO SENSE to them either but in all their efforts, this bold headed psychiatrist just won't listen to us, period!!!!). ......... ...frustrating! Thanks. Ruthie & DolezalMom to two with A.S. (15 and 8), one normal 6 year old, and baby to be delivered 10 days from TODAY).....

May 25, 2009

I've addressed this in another e-mail but it is a battle; our story is / was as

awful or worse, and it takes A HECK OF A LONG TIME TO GET THE CHILD OUT;

our 15 year old was repeating all forms of abuse he learned while visiting his

biological father's home to our then 3 year old son including sexual abuse, and

we thought the system would come and get him the next day; HELL NO THEY DID NOT;

we had to have him home another 6, and 3 hospitalizations before they would help, and it

was only because we did commital papers, etc., so you would just not believe the hell that

parents of mental illness parents go through! It is HORRIBLE.............and there are a lot of us.

N.A.M.I.: look that up that is a great place and resource; in YOUR COMMUNITY they

can tell you places to go, take the child, etc.; stand for National Alliance of the Mentally Ill;

they have classes for free, support groups, and is run and classes done by people just like me (I

was going to train to do it and our son just keeps making us too busy so we / I end up not at the time)

but everyone doing it, lives with the reality of every single day mental illness with family members, work,

etc..............great resource to check in to!!!!!

Ruthie Dolezal

From: jrushen@...Date: Mon, 25 May 2009 12:20:31 -0700Subject: Re: ( ) A.S. not A.S.

How old is your son???? I can't believe that the state won't do anything....he sounds so violent and I too would be frightened. Did you call the State Assistance office? Does he have a medical card? My son does. What about MH/MR? There has to be someone that can help you....did you call you local state representative? He/she may have some ideas. You case sounds so awful...there must be some place for him as he is not funcitoning well at home and I fear for your safety as well as the emotional state of all you!!!!

Jan

I will pray for you and your family also!

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

absolutely NOT; he cannot live at home safely; he is a danger to himself and others OFTEN, and we justcannot have him home anymroe right now; and, he does not have an IEP or a 504 with his 12 diagnosis including Type Idiabetes; have spent over $10,000 just in lawyer fees to try for 'em; spent another school year trying and fighting.... even thoughhe runs from school 3-6 times a month, can't get one; he does that because of the environment and overwhelmed, but no, we donot want him home; we fought like HECK to get him in to the system....he is legally mentally ill and when those parts of him comeover, he can be off a day to months and months, and cannot be in the family home unless we want to hire people to stay up 24/7,,,,,,,, Ruthie

From: me2ruth (DOT) comDate: Mon, 25 May 2009 14:15:58 +0000Subject: Re: ( ) A.S. not A.S.

>> We are advocating to get him out of there but his DHS worker is not ready to yet; she is still fighting> > for him in there; we love him being close, just that they are such horrible communicators, and not willing> > to accept FACT he has A.S. in the first place; Hi Ruthie; I remember you from before. Can't forget a name like yours. I just wanted to wish you luck. Sounds like your son would be better off at home with a good IEP in the local school. And it sounds from your other son's experience that he could get that, right? Is that what you are thinking? Maybe you will just have to be patient and carefully jump through all the DHS worker's hoops to get him out as soon as possible.Ruth

May 25, 2009

Ruthie,

If nothing else my psychiatrist can testify to what this is doing to me, I am

diagnosed as bipolar and he refuses to increase my meds and says this child

needs to be out of our home. He has never met the child and yet he fears that

he will one day kill me.

My husband sees it in the middle of the crisis, but then just refuses to take

the action necessary to make anything happen. So, I end up having to do it.

Then that brings on the guilt that I am making him choose between him and his

child.

Just yesterday he said that if he had just one reason he would change his mind

about Mack having to leave. I asked him if he was asking me for that reason and

he said he would take it from anyone: me. Mack, our other son, God, whoever. I

just flat told him that I was not buying the guilt anymore and that I was not

going to tell him that we were the best place for Mack anymore. I told him that

I didn't care if he paid his crazy ex-wife to take him, I can't live with the

child anymore and it is affecting my health and safety, as well as our family.

If he wants me and my son who he adopted when we married, then he has to decide.

It is in his hands to decide who he wants to be his family.

I am just tired of having to be the one who has to talk to all the agencies and

authorities about Mack. It makes me feel like I am the evil stepmother. It is

time for my husband to step up to the plate. If he is not willing to, then I am

prepared to leave. I am tired of being abused by this child that I have tried

to help and then being the one who has to bring in the heavy artillery while my

husband is still trying to find one more reason to not take action.

I am going to forward your email to my husband for him to read. Maybe it will

spur him into some kind of action. He says that it needs to happen, but he

doesn't want to be the one to make it happen.

In the meantime I simply refuse to be alone with the child. I won't join family

events that include the child. I am making it very clear that I want nothing to

do with him. Maybe this is wrong, but it is the only way I can get my poing

across.

I am a special ed teacher with 30+ years experieince with children with multiple

disabilities, autism, and behavior problems. My older afopted son who is still

at home has Fetal Alcohol Syndrome and we have gone through some problems with

him. But none like these. I have a 27 yo adopted son who was also violent and

spent a year in a wilderness camp, But by far this child is more violent and

harder to handle than any that I have come across.

I am close to losing my husband, my health, my sanity and possibly my life

because of this child.

Thanks for all the words of advice. If my husband will not pick up the ball and

carry it, then I will have no choice but to do so.

Donna

---- BRYAN DOLEZAL <DOLEZAL123@...> wrote:

>

> First, Donna....we have 'similar' stories.... IS biologically mine, was

every form of abused by his bio-father,

>

> so he has all fo that on top of AD, Type I diabetes, PTSD (probable),

Dysnomia, Depression, Dyslexia, Processing issues,

>

> ADHD, memory problems, anxiety, abuse of child, family relationship issues,

sensory problems, vision issues, and the like!

>

> I guess if you can afford to PAY for residential and stuff, that is okay for

you; if you can afford it, I would

>

> be looking in to the place specifically for kids with A.S. then in Cortdelane,

Idaho-----your step-son sounds like

>

> our son.....our son has been in and out of the system since 10 years of age,

resided in PMIC for 19 months, then

>

> residential for a year, with 3 hospitalizations leading up to that (but we

commited him, and then the state steps in

>

> and pays because WE CANNOT AFFORD TO PAY!)...........he came home for 19

months, and was on the MHW (we are

>

> in Iowa; wait was about 3 months at the time; it is about a year right now; I

fill out paperwork bi-monthly so if he is

>

> in treatment when his name is up, he is on the list again not too terribly far

out)........Our son will be getting adult services,

>

> and I have been assured there is NO 12 year waiting list here, but again, we

have our son in the system already; his worker

>

> is already working on it. WE WORK TOGETHER; we have had psyche evals, done

all that, and she knows we are amazing, so

>

> we work TOGETHER now, and she knows he cannot come home.

>

> To finish our son's history, he then did shelter on and off and was in 59

days; our worker MADE us bring him home to keep

>

> from loosing his waiver; he made it HELL but made it about 2 more months at

home before landing at shelter again, 2 days

>

> later, in the hospital (about 5th time in less than year at that point) and

we were told to commit him again, so we did, and

>

> he went to MHI (mental health institute----most strict setting next to

prison). From there, he went residential again, and that

>

> is where he is now. No PMIC'S would take him then but this residential place

would, so he is there; he CAN go PMIC again now; he

>

> has done excellent there / made HUGE improvements through MHI; only issue we

feel left is fact this place DENIES he has AS which STINKS

>

> for him and is not meeting his needs because of that.

>

> As for how you get the help, you press charges, you have the police escort him

to the hospital; when there is abuse in the home, he

>

> needs to go there. You take him to the shelter; then professionals are

witnesses, and when he runs from there, etc., the records grow,

>

> and in our case, our son ended up in the hospital. In the hospital, our son

told the psychiatrist he has had for 4 years now that he was

>

> going to kill him (and much worse than that) so we had no problems

progressing. We did have problems getting DHS to accept our

>

> case, as they want him to stay home because we are great parents, have a great

home, ladaladala..........we have 2 young sons

>

> in the home, and his abuses them BESIDES us, and we just keep fighting,

fighting and fighting. Our son has DEATH PLANS in details for us

>

> when he is angry, so our worker has NO PLANS FOR HIM TO EVER BE IN SOCIETY,

unsupervised, or home to live again at this time (and is

>

> 100 percent committed to finally keeping our family and us safe!!!!).

>

> The best thing you can do is advocate for yourselves. Fact you state you

cannot press charges for threats is completely untrue as far

>

> as I know; and it can get him committed / put in to a more strict, immediate

hospitalization stay (like MHI---3 months is the average stay) for

>

> SURE!!!!! When you put him in the hospital, you go to the court, tell them

you want to fill out committal papers, and do it!!!! A judge hears your

>

> case, and you share the main safety concerns but in the paperwork and verbally

you must say the following phrase: JOHNNY is a danger to

>

> himself and others...........word it any other way, sugar coat it, and JOHNNY

will be coming home with YOU again!

>

> YOU ARE NOT ALONE, and that is why the battle is SOOOOOOOOO hard. Your son is

mentally ill (it sounds like and I believe professionals would

>

> support that with all the diagnoses) and this is what mental illness looks

like; add A.S. to it all, and we just have a mess-----there is life after

>

> it all but they are our children regardless of where they live............I

know that for sure...........we provide all my son's things, clothes (even

though

>

> he gets a clothing allowance through DHS, etc.----we don't utilize DHS for

anything, in our opinions, other than services-----we just cannot have

>

> him abusing us in the home, destroying our property, making it so we can not

work or hold down jobs, etc; he is more than anyone can handle on their

>

> own safely or in the home, PERIOD. He needs constant supervision, and we

cannot do that.

>

> YOU NEED TO TELL THE PEOPLE YOU TALK WITH THAT YOU ARE CONTEMPLATING MOVING

OUT, YOU ARE AFRAID HE IS GOING TO KILL YOU,

>

> HE WOULD HAVE KILLED YOU IF YOUR SON WERE NOT HOME TO CALL POLICE AND MAKE HIM

STOP STRANGLING YOU, OVER AND OVER AND OVER. Should NOT be like that but that

is reality.......................you HAVE TO DO THAT THOUGH. In fact, I would

call DHS myself, and insist

>

> upon talking with a worker and get the ball rolling but you really need the

commital, shelter reports, everything you can get to get them

>

> motivated to take your case on.

>

> GOOD LUCK, and hang in there. I know it is tough. Also, do things always for

you, and stay sane. If you appear the least bit like you are loosing your mind,

it will become all about you, and the focus shifts to YOU instead of the child,

and this child needs help. GOOD LUCK

>

> Ruthie Dolezal

>

> From: donnalmoore@...

> Date: Mon, 25 May 2009 15:22:51 -0500

> Subject: Re: ( ) A.S. not A.S.

>

> Mack will be 17 in September. He does qualify for Office for Citizens with

Disabilities, but so far all they have offered is a stipend for us to pay $6/hr

for someone to give us 21 hours if respite a week. We have not used it because

agencies want $15/hr minimum & even more when they hear about the violence.

Besides they want to be paid directly from OCDD or Medicaid waiver. Mack got

the AS diagnosis 2 years ago & the waiver waiting list is 12 years.

>

> He is also on waiting lists for group homes, but by the time his name comes up

for an adolescent home, he will be 18 & need an adult home. Who knows how long

that list is.

>

> My husband is supposed to start making more phone calls this week. I have

been the one running the show for the last 6 years & on my doctor's advice have

removed myself from it. I hang out in my bedroom with the door locked if my

husband is not home. I feel like a prisoner here which is why I am considering

finding an apartment nearby as an oasis for myself!

>

> We can use all the prayers we can get.

>

> Sent from my iPhone

>

> Blessings, Donna

>

> On May 25, 2009, at 2:20 PM, rushen janice <jrushen@...> wrote:

>

> How old is your son???? I can't believe that the state won't do anything....he

sounds so violent and I too would be frightened. Did you call the State

Assistance office? Does he have a medical card? My son does. What about MH/MR?

There has to be someone that can help you....did you call you local state

representative? He/she may have some ideas. You case sounds so awful...there

must be some place for him as he is not funcitoning well at home and I fear for

your safety as well as the emotional state of all you!!!!

>

> Jan

> I will pray for you and your family also!

>

> Janice Rushen

>

> " I will try to be open to all avenues of wisdom and hope "

>

> absolutely NOT; he cannot live at home safely; he is a danger to himself and

others OFTEN, and we just

> cannot have him home anymroe right now; and, he does not have an IEP or a 504

with his 12 diagnosis including Type I

> diabetes; have spent over $10,000 just in lawyer fees to try for 'em; spent

another school year trying and fighting.... even though

> he runs from school 3-6 times a month, can't get one; he does that because of

the environment and overwhelmed, but no, we do

> not want him home; we fought like HECK to get him in to the system....he is

legally mentally ill and when those parts of him come

> over, he can be off a day to months and months, and cannot be in the family

home unless we want to hire people to stay up 24/7,,,,,,,,

>

> Ruthie

>

> From: me2ruth (DOT) com

> Date: Mon, 25 May 2009 14:15:58 +0000

> Subject: Re: ( ) A.S. not A.S.

>

> >

> > We are advocating to get him out of there but his DHS worker is not ready to

yet; she is still fighting

> >

> > for him in there; we love him being close, just that they are such horrible

communicators, and not willing

> >

> > to accept FACT he has A.S. in the first place;

>

> Hi Ruthie; I remember you from before. Can't forget a name like yours. I

just wanted to wish you luck. Sounds like your son would be better off at home

with a good IEP in the local school. And it sounds from your other son's

experience that he could get that, right? Is that what you are thinking? Maybe

you will just have to be patient and carefully jump through all the DHS worker's

hoops to get him out as soon as possible.

>

> Ruth

>

May 25, 2009

I used to attend NAMI meetings but it seemed their focus was on families who qualified for Medicaid or SSI. Our income is to high. Too high for public, yet the rest of us would live in poverty after paying Gor the programs he needs. The longest hospitalization he has had was 10 days. He is a model patient in that short of a stay. Now 16 months in residential he showed the behaviors. They released him even though the incidents had not decreased since admission. I believe it was because we were a private pay & only paid $600/month. We were the only private kid there. The state would pay $5000/month, but the state would not pay for him to stay there. If the state took custody they would have to spend 3 months reevaluating him & thenplace him wherever there was an available bed. I had already investigated all the other facilities & knew this one was best & he had been on the waiting list for 3 years.That's why I am so frustrated now!Sent from my iPhoneBlessings, DonnaOn May 25, 2009, at 5:11 PM, BRYAN DOLEZAL <DOLEZAL123@...> wrote: