Re: Re: Transportation and Home based funding

[Guest guest]

It sounds like you are doing a great job assisting in expanding his

independence and you are also doing a great job of managing the funding.

By the way, and Noah, though they have different diagnoses, sound very

similar!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Transportation and Home based funding

IPADDUnite

Date: Saturday, September 27, 2008, 3:38 AM

>I have a problem deciding what is the responsibility of a " parent "

to any child, as opposed to what I should be paid for doing so I only

charge for things that I wouldn't have to do for her if she were

a " typical " young adult. Also, she does get SSI and pays me room and

board. I guess in this area I fall into the " I'm so happy to get

something, and I don't want to lose it " position. We will be doing

her annual plan in a few weeks and I have learned a lot from this

group on what to add to that plan. If it's in there, then I will

feel better about claiming it. I also understand a little better how

teachers feel about writing the goals update. Now that my time has

come to status the goals written, and we have not accomplished them,

I feel like I am a failure, even though these same goals have been in

her IEP for years, and I actually know she will probably never

accomplish them. We need to keep working on them none the less. How

do other parents deal with this?

> Gloria, why are you not claiming the rest of

the funding yourself? I am sure you provide help 24/7 and could

claim the money for help with meals, laundry, personal hygiene,

banking, whatever you have to do to assist.

>

>

[Guest guest]

Same here, Cindi...I am very grateful for the funding and for all my friends on

IPADDU for helping to further our knowledge and expand ours and our children's

horizons.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Re: Transportation and Home based funding

I have looked at our son like a brick building...and we, his parents are the

mortar! If we remove the mortar, the support, 24-7 he is going to fall

apart like a house of cards. Adam leaves for work every morning handsome as

can be, confident. EVery night he checks in with us, " do I need a shower "

Yes,every adult needs a shower every night. He shaves on his own, but every

night his father checks his shave, often me when Art is out of town,to make

sure he doesnt have a patch. What I am saying is He is 21. I have two

other sons, and he see how little I have had to do for them. We take

ourselves out of the equation..can Adam do this without us. If the answer

is no, that goes into our HBSS as grooming or community skills,or social

planning and it is all legitimate. at least acccording to our SF and other

sources. Art, the dad is PSW.Adam can walk up the street to get a

haircut, cut but the night before there is about an hour of money coaching.

He leaves with the right outer wear, after we spent the morning listening to

the weather on the radio and quiz, do you need a parka or the rain coat. If

our young adults did not have us constantly coaching I fear what their lives

would bbe like. But this all goes under quality community life, which HBSS

affords us. And I am very thankful for it. Cindi

[Guest guest]

Thanks Ellen.  I know we all are doing the best we can or we wouldn't be here. 

It is funny how our kids can be so different but yet so much alike.

Shirley

From: freddybearluv2002 <prentice50aceweb (DOT) com>

Subject: Re: Transportation and Home based funding

IPADDUnite@gro ups.com

Date: Saturday, September 27, 2008, 3:38 AM

>I have a problem deciding what is the responsibility of a " parent "

to any child, as opposed to what I should be paid for doing so I only

charge for things that I wouldn't have to do for her if she were

a " typical " young adult. Also, she does get SSI and pays me room and

board. I guess in this area I fall into the " I'm so happy to get

something, and I don't want to lose it " position. We will be doing

her annual plan in a few weeks and I have learned a lot from this

group on what to add to that plan. If it's in there, then I will

feel better about claiming it. I also understand a little better how

teachers feel about writing the goals update. Now that my time has

come to status the goals written, and we have not accomplished them,

I feel like I am a failure, even though these same goals have been in

her IEP for years, and I actually know she will probably never

accomplish them. We need to keep working on them none the less. How

do other parents deal with this?

> Gloria, why are you not claiming the rest of

the funding yourself? I am sure you provide help 24/7 and could

claim the money for help with meals, laundry, personal hygiene,

banking, whatever you have to do to assist.

>

>

[Guest guest]

I have seen tandems at all the big bike stores. I know some families who have

had to have them custom made...depending on size needed. I couldn't tandem with

Noah because I am short, he is much taller and heavier. It would be hard for me

to be the lead rider. I would probably kill myself trying! Of course, then he

would qualify for funding for housing! Black humor on a cloudy Sunday!

I know many children who have autism who do tie their own shoes. I would

suggest working with a good OT on that. I may try again with Noah. As you know

I always say, never give up!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Transportation and Home based funding

>

>

>

> >I have a problem deciding what is the responsibility of

a " parent "

> to any child, as opposed to what I should be paid for doing so I

only

> charge for things that I wouldn't have to do for her if she were

> a " typical " young adult. Also, she does get SSI and pays me room

and

> board. I guess in this area I fall into the " I'm so happy to get

> something, and I don't want to lose it " position. We will be

doing

> her annual plan in a few weeks and I have learned a lot from this

> group on what to add to that plan. If it's in there, then I will

> feel better about claiming it. I also understand a little better

how

> teachers feel about writing the goals update. Now that my time

has

> come to status the goals written, and we have not accomplished

them,

> I feel like I am a failure, even though these same goals have

been in

> her IEP for years, and I actually know she will probably never

> accomplish them. We need to keep working on them none the less.

How

> do other parents deal with this?

>

> > Gloria, why are you not claiming the rest of

> the funding yourself? I am sure you provide help 24/7 and could

> claim the money for help with meals, laundry, personal hygiene,

> banking, whatever you have to do to assist.

> >

> >

>

>

>

>

>

>

[Guest guest]

Angel's support living assistant taught Angel how to tie her shoes.  Annie is a

miracle worker.  My husband likes to refer to her as our " Annie Sullivan " .

Finato

www.AngelSpeaks.com

www.wegrowdreams.org

From: Ellen Bronfeld <egskb@...>

Subject: Re: Re: Transportation and Home based funding

IPADDUnite

Date: Sunday, September 28, 2008, 8:39 AM

I have seen tandems at all the big bike stores. I know some

families who have had to have them custom made...depending on size needed. I

couldn't tandem with Noah because I am short, he is much taller and heavier. It

would be hard for me to be the lead rider. I would probably kill myself trying!

Of course, then he would qualify for funding for housing! Black humor on a

cloudy Sunday!

I know many children who have autism who do tie their own shoes. I would

suggest working with a good OT on that. I may try again with Noah. As you know

I always say, never give up!

Ellen

Ellen Garber Bronfeld

egskbsbcglobal (DOT) net

Re: Transportation and Home based funding

>

>

>

> >I have a problem deciding what is the responsibility of

a " parent "

> to any child, as opposed to what I should be paid for doing so I

only

> charge for things that I wouldn't have to do for her if she were

> a " typical " young adult. Also, she does get SSI and pays me room

and

> board. I guess in this area I fall into the " I'm so happy to get

> something, and I don't want to lose it " position. We will be

doing

> her annual plan in a few weeks and I have learned a lot from this

> group on what to add to that plan. If it's in there, then I will

> feel better about claiming it. I also understand a little better

how

> teachers feel about writing the goals update. Now that my time

has

> come to status the goals written, and we have not accomplished

them,

> I feel like I am a failure, even though these same goals have

been in

> her IEP for years, and I actually know she will probably never

> accomplish them. We need to keep working on them none the less.

How

> do other parents deal with this?

>

> > Gloria, why are you not claiming the rest of

> the funding yourself? I am sure you provide help 24/7 and could

> claim the money for help with meals, laundry, personal hygiene,

> banking, whatever you have to do to assist.

> >

> >

>

>

>

>

>

>

[Guest guest]

View full size

Hi Cindi, my is 16.5 and I'm doing this same sort of thing with him.? We

talk and work through the simplest of tasks but if you don't start with small

things the bigger things will never happen.

went to Homecoming this past Saturday with a group from his class, it was

so wonderful to see him so excited, all dressed up just like a young man should

be.?

I'm not sure if this group can see pictures but I'll attach one just in case!?

Yes, I'm proud, we've come a long way!

H.

Re: Re: Transportation and Home based funding

I have looked at our son like a brick building...and we, his parents are the

mortar! If we remove the mortar, the support, 24-7 he is going to fall

apart like a house of cards. Adam leaves for work every morning handsome as

can be, confident. EVery night he checks in with us, " do I need a shower "

Yes,every adult needs a shower every night. He shaves on his own, but every

night his father checks his shave, often me when Art is out of town,to make

sure he doesnt have a patch. What I am saying is He is 21. I have two

other sons, and he see how little I have had to do for them. We take

ourselves out of the equation..can Adam do this without us. If the answer

is no, that goes into our HBSS as grooming or community skills,or social

planning and it is all legitimate. at least acccording to our SF and other

sources. Art, the dad is PSW.Adam can walk up the street to get a

haircut, cut but the night before there is about an hour of money coaching.

He leaves with the right outer wear, after we spent the morning listening to

the weather on the radio and quiz, do you need a parka or the rain coat. If

our young adults did not have us constantly coaching I fear what their lives

would bbe like. But this all goes under quality community life, which HBSS

affords us. And I am very thankful for it. Cindi

------------------------------------