CHARGE: Re:: An upsetting experience I had yesterday.

[Guest guest]

How about reporting it to Adult protective services with the goal of

having him assigned a protective payee That would take away the

usefulness of his check to the family. And then hopefully he could get

out in a community placement before he is 50. Kim/Michigan

CHARGE: Re:: An upsetting experience I had

yesterday.

Hey guys,

I had something happen yesterday that is more than likely what

got

me on that soapbox in previous post.

I have a therapy dog and go to the psychiatric floor of local

hospital once a week. Yesterday there was a young man from my

town

that I have known for a long time. He is mentally challenged and

deaf. He is completely deaf and does not speak at all. He is

about

the same age as . Needless to say he latched onto me right

away.

When staff found out I could sign it became evident to me that

no one

was able to communicate with him at all. I know him well enough

to

know that he can not read or write very well. I told them I

could

talk with him but that I could not act as an interpreter. By

this

time he was holding on to my hand and crying. I did take him

aside

and just signed with him to try and calm him down. He told me he

got

in fight with sister at home, sorry, upset, no more fight, want

mom.

I did translate to him that mom was on her way and that he would

have

meeting with doctors who would help him. No one mad at him just

want

to make things better. Mom showed up and right away said to me

" Oh

you can sign much better than I can. " I ask one of the nurses if

they

had an interpreter coming and she tells me they called one but

they

didn't show up. (not sure if they were just covering) but I do

know

he had just come in the night before and it is extremely hard to

get

interpreters on short notice. I didn't go into the meeting with

them

because I am not a certified interpreter. They came out of

meeting

and mom took him home that afternoon.

I know of this family. I have tried working with them in the

past to

get this young man out into the community with signing support.

The

problem is I believe the family depends on some of his SSI to

live.

Everytime I have had contact with him he is a little clingly but

happy and sweet in nature. From what knowledge I have the home

situation for him is not a real stable one. The family signs in

a

home sign to deal with him which makes it extremely hard to get

things across to him sometimes. If I keep my sign very simple he

can

understand me but does not catch on if you use to much spelling

sign.

It's a case where there is so much potential for him but instead

I

find him in the psychiatric unit of the local hospital, afraid

with

no way of knowing whats happening. I tried again to talk with

his mom

about community placement. I offered my help but I really don't

expect to hear from her. It's just so frustrating.

mom to (31)

[Guest guest]

Kim,

I have made Pa Protection Advocacy aware of this situation in the

past. The problem is that this as in allot of cases the family

situation is all that the individual is conscious of. You see it in

foster care allot. The child is being abused or neglected but will

still yearn for their parents. The child is not emotionally muture

enough to realize what they want is that " dream family'where they

will be loved and cared for. They can only connect with what they

know as their family. When parents are in threat of loosing their

child they will become, in words, what that child wants. This is the

case of my friend. The family has kept him so tied within the

disfunctional circle that when someone talks with him about leaving

home he becomes confused and frightened. In order for Pa Protection

Advocacy to be able to help, my friend has to communicate his need

and willingness of wanting help. The family make sure that doesn't

happen by filling him with fear of the outside world away from the

family.

I work with Pa Protection Advocacy and Pa Parent to Parent as an

advocate and memtor. Unfortunatly I have seen to many cases where

parents look at their own needs above the needs of their adult child

with MR or they simply have gotten caught up into being the only

caregiver/support for their child that they refuse to seek outside

help that is available due to their own distorted reasoning. It

doesn't help that either when you have parents who seek help are told

their is no money for community supports or a long waiting list for

services. Never enough money..... by the MHMR agency that is suppose

to be helping them. I have seen elderly parents give up because they

become to exhausted fighting the system. They die never having the

piece of mind of a resolution to what will happen to their child.

I've had one 74 yr. old mother tell me she's prays that her son will

die before her so she won't have to die worrying about the

continueation of proper care. This is wrong....The federal and state

government need to fund the need. End the waiting list for services.

I am only one person and I get so very tired of the constant fight.

But then I meet another wonderful individual and a wonderful

struggling family.

mom to (31)

>

> How about reporting it to Adult protective services with the goal of

> having him assigned a protective payee That would take away the

> usefulness of his check to the family. And then hopefully he could

get

> out in a community placement before he is 50. Kim/Michigan

>

> CHARGE: Re:: An upsetting experience I had

> yesterday.

>

>

>

> Hey guys,

>

> I had something happen yesterday that is more than likely what

> got

> me on that soapbox in previous post.

>

> I have a therapy dog and go to the psychiatric floor of local

> hospital once a week. Yesterday there was a young man from my

> town

> that I have known for a long time. He is mentally challenged

and

>

> deaf. He is completely deaf and does not speak at all. He is

> about

> the same age as . Needless to say he latched onto me

right

> away.

> When staff found out I could sign it became evident to me that

> no one

> was able to communicate with him at all. I know him well

enough

> to

> know that he can not read or write very well. I told them I

> could

> talk with him but that I could not act as an interpreter. By

> this

> time he was holding on to my hand and crying. I did take him

> aside

> and just signed with him to try and calm him down. He told me

he

> got

> in fight with sister at home, sorry, upset, no more fight,

want

> mom.

> I did translate to him that mom was on her way and that he

would

> have

> meeting with doctors who would help him. No one mad at him

just

> want

> to make things better. Mom showed up and right away said to me

> " Oh

> you can sign much better than I can. " I ask one of the nurses

if

> they

> had an interpreter coming and she tells me they called one but

> they

> didn't show up. (not sure if they were just covering) but I do

> know

> he had just come in the night before and it is extremely hard

to

> get

> interpreters on short notice. I didn't go into the meeting

with

> them

> because I am not a certified interpreter. They came out of

> meeting

> and mom took him home that afternoon.

>

> I know of this family. I have tried working with them in the

> past to

> get this young man out into the community with signing

support.

> The

> problem is I believe the family depends on some of his SSI to

> live.

> Everytime I have had contact with him he is a little clingly

but

>

> happy and sweet in nature. From what knowledge I have the

home

> situation for him is not a real stable one. The family signs

in

> a

> home sign to deal with him which makes it extremely hard to

get

> things across to him sometimes. If I keep my sign very simple

he

> can

> understand me but does not catch on if you use to much

spelling

> sign.

> It's a case where there is so much potential for him but

instead

> I

> find him in the psychiatric unit of the local hospital, afraid

> with

> no way of knowing whats happening. I tried again to talk with

> his mom

> about community placement. I offered my help but I really

don't

> expect to hear from her. It's just so frustrating.

>

> mom to (31)

>

>

>

>

>

>

>

>

[Guest guest]

victoria u r wonderful and those mums r so right some of them y people say

it here one of my mums friends was how will she get her vegys now no normal

mum would coment to my mother how am i gonna do that lol

>

> Kim,

> I have made Pa Protection Advocacy aware of this situation in the

> past. The problem is that this as in allot of cases the family

> situation is all that the individual is conscious of. You see it in

> foster care allot. The child is being abused or neglected but will

> still yearn for their parents. The child is not emotionally muture

> enough to realize what they want is that " dream family'where they

> will be loved and cared for. They can only connect with what they

> know as their family. When parents are in threat of loosing their

> child they will become, in words, what that child wants. This is the

> case of my friend. The family has kept him so tied within the

> disfunctional circle that when someone talks with him about leaving

> home he becomes confused and frightened. In order for Pa Protection

> Advocacy to be able to help, my friend has to communicate his need

> and willingness of wanting help. The family make sure that doesn't

> happen by filling him with fear of the outside world away from the

> family.

>

> I work with Pa Protection Advocacy and Pa Parent to Parent as an

> advocate and memtor. Unfortunatly I have seen to many cases where

> parents look at their own needs above the needs of their adult child

> with MR or they simply have gotten caught up into being the only

> caregiver/support for their child that they refuse to seek outside

> help that is available due to their own distorted reasoning. It

> doesn't help that either when you have parents who seek help are told

> their is no money for community supports or a long waiting list for

> services. Never enough money..... by the MHMR agency that is suppose

> to be helping them. I have seen elderly parents give up because they

> become to exhausted fighting the system. They die never having the

> piece of mind of a resolution to what will happen to their child.

> I've had one 74 yr. old mother tell me she's prays that her son will

> die before her so she won't have to die worrying about the

> continueation of proper care. This is wrong....The federal and state

> government need to fund the need. End the waiting list for services.

> I am only one person and I get so very tired of the constant fight.

> But then I meet another wonderful individual and a wonderful

> struggling family.

>

> mom to (31)

>

>

>

> >

> > How about reporting it to Adult protective services with the goal of

> > having him assigned a protective payee That would take away the

> > usefulness of his check to the family. And then hopefully he could

> get

> > out in a community placement before he is 50. Kim/Michigan

> >

> > CHARGE: Re:: An upsetting experience I had

> > yesterday.

> >

> >

> >

> > Hey guys,

> >

> > I had something happen yesterday that is more than likely what

> > got

> > me on that soapbox in previous post.

> >

> > I have a therapy dog and go to the psychiatric floor of local

> > hospital once a week. Yesterday there was a young man from my

> > town

> > that I have known for a long time. He is mentally challenged

> and

> >

> > deaf. He is completely deaf and does not speak at all. He is

> > about

> > the same age as . Needless to say he latched onto me

> right

> > away.

> > When staff found out I could sign it became evident to me that

> > no one

> > was able to communicate with him at all. I know him well

> enough

> > to

> > know that he can not read or write very well. I told them I

> > could

> > talk with him but that I could not act as an interpreter. By

> > this

> > time he was holding on to my hand and crying. I did take him

> > aside

> > and just signed with him to try and calm him down. He told me

> he

> > got

> > in fight with sister at home, sorry, upset, no more fight,

> want

> > mom.

> > I did translate to him that mom was on her way and that he

> would

> > have

> > meeting with doctors who would help him. No one mad at him

> just

> > want

> > to make things better. Mom showed up and right away said to me

> > " Oh

> > you can sign much better than I can. " I ask one of the nurses

> if

> > they

> > had an interpreter coming and she tells me they called one but

> > they

> > didn't show up. (not sure if they were just covering) but I do

> > know

> > he had just come in the night before and it is extremely hard

> to

> > get

> > interpreters on short notice. I didn't go into the meeting

> with

> > them

> > because I am not a certified interpreter. They came out of

> > meeting

> > and mom took him home that afternoon.

> >

> > I know of this family. I have tried working with them in the

> > past to

> > get this young man out into the community with signing

> support.

> > The

> > problem is I believe the family depends on some of his SSI to

> > live.

> > Everytime I have had contact with him he is a little clingly

> but

> >

> > happy and sweet in nature. From what knowledge I have the

> home

> > situation for him is not a real stable one. The family signs

> in

> > a

> > home sign to deal with him which makes it extremely hard to

> get

> > things across to him sometimes. If I keep my sign very simple

> he

> > can

> > understand me but does not catch on if you use to much

> spelling

> > sign.

> > It's a case where there is so much potential for him but

> instead

> > I

> > find him in the psychiatric unit of the local hospital, afraid

> > with

> > no way of knowing whats happening. I tried again to talk with

> > his mom

> > about community placement. I offered my help but I really

> don't

> > expect to hear from her. It's just so frustrating.

> >

> > mom to (31)

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

, I will agree, you are one in a million and we need a million

more just like you! I am a Voc. Rehab Counselor by day and see these

situations come up often too. Our goal is always to get a protective

payee assigned (usually someone like you) and soon the family is happy

to give him up since he now serves no purpose since they no longer " get

to use his money as they please " . And coming from Child Welfare years

before I know what you mean about kids who have unconditional love for

their not so deserving parents. You are such a busy person what a God

send you must be to folks! I enjoy so much reading about your

achievements with you have great ideas and give hope and

inspiration for the rest of us. When you told your story about the home

where resides and how and the others were involved with

planning and hiring of staff I was so inspired! That indeed would be my

dream for my son also and to know the path has been laid already is a

great thing! We too have been fighting since my son was 4 (sued the

school system back when he was 5 for services even got the pleasure of

getting the Director of Special Ed (who was no good) canned) Of coarse I

also see that it never ends that we have to always climb back on our

soap box. I do get tired and rest then get enough strength and climb

back on. We now have been blessed to have a terrific teacher who is

degreed in HI and Cognitive behaviors and she is absolutely a perfect

fit for my son. She is discussing coming to California with us in July

for the CHARGE conf. which would be wonderful! I give you lots of

credit for because you did not have this web site which is just

awesome to have. We did not have a correct diagnosis until my son was 2

1/2 and then it was someone like you who diagnosed him while we were

waiting to see the developmental specialist at Riley Children's hospital

in the waiting room a lady who had in the past done respite care for a

CHARGE kiddo asked us if he had CHARGE since he looked a lot like the

kid she had taken care of. We said dunno and when we went in to see the

doctor we mentioned this to her and voila he is a 100% classic CHARGE'r

kid. Life is crazy how things work out in the end! We attended the

CHARGE conf. in Indy and that was a world of knowledge, now at our

fingertips. I am thankful for this organization but look up to those of

you who have struggled with older CHARGE children who did not have this

great advantage. Keep up the great work!! You have a wonderful gift!

Kim/Michigan CHARGE'r soon to be a teenager Ugh!

CHARGE: Re:: An upsetting experience I had

> yesterday.

>

>

>

> Hey guys,

>

> I had something happen yesterday that is more than likely what

> got

> me on that soapbox in previous post.

>

> I have a therapy dog and go to the psychiatric floor of local

> hospital once a week. Yesterday there was a young man from my

> town

> that I have known for a long time. He is mentally challenged

and

>

> deaf. He is completely deaf and does not speak at all. He is

> about

> the same age as . Needless to say he latched onto me

right

> away.

> When staff found out I could sign it became evident to me that

> no one

> was able to communicate with him at all. I know him well

enough

> to

> know that he can not read or write very well. I told them I

> could

> talk with him but that I could not act as an interpreter. By

> this

> time he was holding on to my hand and crying. I did take him

> aside

> and just signed with him to try and calm him down. He told me

he

> got

> in fight with sister at home, sorry, upset, no more fight,

want

> mom.

> I did translate to him that mom was on her way and that he

would

> have

> meeting with doctors who would help him. No one mad at him

just

> want

> to make things better. Mom showed up and right away said to me

> " Oh

> you can sign much better than I can. " I ask one of the nurses

if

> they

> had an interpreter coming and she tells me they called one but

> they

> didn't show up. (not sure if they were just covering) but I do

> know

> he had just come in the night before and it is extremely hard

to

> get

> interpreters on short notice. I didn't go into the meeting

with

> them

> because I am not a certified interpreter. They came out of

> meeting

> and mom took him home that afternoon.

>

> I know of this family. I have tried working with them in the

> past to

> get this young man out into the community with signing

support.

> The

> problem is I believe the family depends on some of his SSI to

> live.

> Everytime I have had contact with him he is a little clingly

but

>

> happy and sweet in nature. From what knowledge I have the

home

> situation for him is not a real stable one. The family signs

in

> a

> home sign to deal with him which makes it extremely hard to

get

> things across to him sometimes. If I keep my sign very simple

he

> can

> understand me but does not catch on if you use to much

spelling

> sign.

> It's a case where there is so much potential for him but

instead

> I

> find him in the psychiatric unit of the local hospital, afraid

> with

> no way of knowing whats happening. I tried again to talk with

> his mom

> about community placement. I offered my help but I really

don't

> expect to hear from her. It's just so frustrating.

>

> mom to (31)

>

>

>

>

>

>

>

>