RE: Patty's needs as an adult

[Guest guest]

Bonnie-

This was very helpful. Thank you for sharing it. And please thank Patty

for allowing her life to be shared so freely. You both know her life has

had a huge impact on Aubrie's by giving us a bit of a roadmap.

Blessings to you both -

Love

Michele W

[Guest guest]

Bonnie

Very eye opening to how life as an adult with charge impacts their

lives and ours.

Clearly it does not really get any easier, our role as an advocate for

our children goes on until were gone or no longer able to fight!

What worries me most in my early years as a parent to Amélie and

Charge, is who fights their corner when were gone...morbid I

know...but always bothering me!!

My thirteen year old eldest daughter le says 'dont worry mum I

will take over if anything happens to you or dad' but I dont want

Amélie to become a burden to her sisters later in life either.

Basically your story rekindles my worst fears of life with charge and

grwoing up in an already difficult world even more challenging for a

person with Charge.

But thank you for sharing this as reallity is so very necessary, and

hopefully things will get better for all our kids.

love Les x

>

> Someone asked me a long time ago what Patty needed as an adult. Recently

> we

> have been going over this again, and again, and again. A while ago Patty

> attended a program for the deaf/blind and they too asked what she needed.

> This

> was two years ago and I wrote to that program. Sadly this wasn't a

> good fit for Patty, they just didn't understand CHARGE and sure as heck

> didn't

> empower Patty. Of what we wrote she needed little was done. Sure there

> were

> a few things but a few do not make good.

> Anyway, we found the letter. I've deleted a few things to not sadden

> Patty.

> It was just a negative experience that she'd rather forget.

> I thought you guys would find the letter informative as your children get

> older. I would bet they too have the same needs.

> Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

> Here it is:

> It must be known that we as a family are in the process of changing our

> (mom

> and dad) title from Patty's conservators to her guardians due to her

> multiply disabling condition. All must communicate with us as well as her.

> Training at ...... must be done with a transition plan in place for Patty

> to

> live in an apartment near Watertown/Boston area and NOT living with her

> parents. If there isn't a transition plan then she does not go. The plan

> must

> include an apartment, social activities, vocational training, orientation

> and

> mobility, medical interventions, advancing in her education, etc.

> Apartment

> living is appropriate for her and can be done with continued training and

> supervision. (She has lived for a year being basically alone in our house-

> we

> work). When she lives near Boston she should be followed by her service

> provider, MA Commission, but should also have a provider from .... To take

> her

> grocery shopping, check up on her, etc…. Patty has the capabilities and

> the

> right to have as independent and fulfilling life as possible.

> Health issues continually arise. Someone needs to know CHARGE and how she

> specifically fits with that as well as understanding her ADD, OCD, and

> anxiety. She is on new meds which are working well. Although Patty

> knows CHARGE

> she does not know the entirety of how she " fits " all of it. This is due to

> the complexity of her syndrome. It should be understood that Patty

> continues

> to learn, to advance and to gain skills.

> Training she still needs:

> It is not ok for her to buy clothes in the mens dept. There are socially

> acceptable dress rules, no hat, etc and this needs to be continued to be

> taught

> to her, not ordered but taught. Yet everyone must understand when she is

> stressed it is harder for her to control her attire sensory issues.

> ORGANIZATION, ORGANIZATION, ORGANIZATION, throughout all aspects of her

> life. We currently use Microsoft outlook even for daily chores.

> Deaf/Blind issues in home, work and community still need to be taught how

> to

> deal with and how to advocate for herself. Although she does well there

> remain barriers.

> She needs social opportunities both at ....... and set up for opportunities

> in the MA area. NO MORE BEING ALONE!!!!

> Although she does quite well she needs further training on Technology!!!

> Tech. also should be used for her organization.

> She needs more training on Money management.

> Is there a community college nearby? Can she take one course?

> She needs to continue to improve her english and writing skills.

> She needs to continue to improve her math skills.

> Sleep is vital to her health and her emotional stability. She must be in

> bed

> by 9 on weekdays and 10 on weekends. Once a month she can stay up late

> but

> no later than 12. She may not get out of bed before 5 am. This needs to

> continually be a focus for her to realize it is not healthy to do. She

> gets out

> of wack otherwise.

> She needs to try a variety of jobs of interest which are appropriate for

> her. Some ideas Patty suggests are working in a hospital with children,

> working

> on computers, working with children who are deaf or deaf/blind.

> Orientation and Mobility continues to be a need especially for pubic trans

> portation, including Boston…

> Patty needs to cook meals independently and make sure she keeps a healthy

> diet. If Patty doesn't make her own meals she can not just get served in

> the

> cafeteria. She has to be taught she can't just eat pastas and soft foods

> which help in her swallowing but do not keep her healthy. She needs

> proteins,

> fruits and veggies.

> Patty needs recreation opportunities.

>

>

>

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

>

[Guest guest]

Bonnie,

You have written an ISP plan in this letter for Patty. Make many

copies...Send them to every one, the head of you county agency, the

head of your MR region, the head of your state Dept. of Public

Welfare. Make Patty's name and story known through the system.

Letters to the editors of your paper are good also. Does your ARC

have a publication? State ARC usually have periodic publications.

Send it in to them.

ISP is Individualized Service Plan that details needed enviorment in

community living. This is what must be followed to the Tee when

waiver is sucured. 's ISP reflects his life. There are meetings

every four months attended by , myself, MR agencies casemanager,

staff working in the home, and supervisor (my girl )

During these meeting everything is reviewed. Goals reached are noted.

We brainstorm ideas for things that have not been reached yet. Most

important tells us what he wants to happen in his life and we

than try to bring those things about. It is how the system is suppose

to work....We use both deaf and hearing interpreters so we are sure

's visions ,ideas, needs are the most important issue at hand.

Self Determination is a word to use in every sentence. It is Patty's

life. She has a right to all her dreams.... Stars are never to high

as long as we have the strenght to reach for them. The battles she

has already fought in her life entitle her to happiness.

I'll be calling next weekend. Excellent work in that letter....Good

luck in your meeting....

>

>

> Someone asked me a long time ago what Patty needed as an adult.

Recently we

> have been going over this again, and again, and again. A while

ago Patty

> attended a program for the deaf/blind and they too asked what she

needed. This

> was two years ago and I wrote to that program. Sadly this

wasn't a

> good fit for Patty, they just didn't understand CHARGE and sure as

heck didn't

> empower Patty. Of what we wrote she needed little was done. Sure

there were

> a few things but a few do not make good.

> Anyway, we found the letter. I've deleted a few things to not

sadden Patty.

> It was just a negative experience that she'd rather forget.

> I thought you guys would find the letter informative as your

children get

> older. I would bet they too have the same needs.

> Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

> Here it is:

> It must be known that we as a family are in the process of changing

our (mom

> and dad) title from Patty’s conservators to her guardians due to

her

> multiply disabling condition. All must communicate with us as

well as her.

> Training at ...... must be done with a transition plan in place

for Patty to

> live in an apartment near Watertown/Boston area and NOT living with

her

> parents. If there isn't a transition plan then she does not go.

The plan must

> include an apartment, social activities, vocational training,

orientation and

> mobility, medical interventions, advancing in her education,

etc. Apartment

> living is appropriate for her and can be done with continued

training and

> supervision. (She has lived for a year being basically alone in

our house- we

> work). When she lives near Boston she should be followed by her

service

> provider, MA Commission, but should also have a provider

from .... To take her

> grocery shopping, check up on her, etc…. Patty has the

capabilities and the

> right to have as independent and fulfilling life as possible.

> Health issues continually arise. Someone needs to know CHARGE and

how she

> specifically fits with that as well as understanding her ADD, OCD,

and

> anxiety. She is on new meds which are working well. Although

Patty knows CHARGE

> she does not know the entirety of how she “fits†all of it.

This is due to

> the complexity of her syndrome. It should be understood that

Patty continues

> to learn, to advance and to gain skills.

> Training she still needs:

> It is not ok for her to buy clothes in the mens dept. There are

socially

> acceptable dress rules, no hat, etc and this needs to be continued

to be taught

> to her, not ordered but taught. Yet everyone must understand

when she is

> stressed it is harder for her to control her attire sensory

issues.

> ORGANIZATION, ORGANIZATION, ORGANIZATION, throughout all aspects of

her

> life. We currently use Microsoft outlook even for daily chores.

> Deaf/Blind issues in home, work and community still need to be

taught how to

> deal with and how to advocate for herself. Although she does well

there

> remain barriers.

> She needs social opportunities both at ....... and set up for

opportunities

> in the MA area. NO MORE BEING ALONE!!!!

> Although she does quite well she needs further training on

Technology!!!

> Tech. also should be used for her organization.

> She needs more training on Money management.

> Is there a community college nearby? Can she take one course?

> She needs to continue to improve her english and writing skills.

> She needs to continue to improve her math skills.

> Sleep is vital to her health and her emotional stability. She must

be in bed

> by 9 on weekdays and 10 on weekends. Once a month she can stay

up late but

> no later than 12. She may not get out of bed before 5 am. This

needs to

> continually be a focus for her to realize it is not healthy to

do. She gets out

> of wack otherwise.

> She needs to try a variety of jobs of interest which are

appropriate for

> her. Some ideas Patty suggests are working in a hospital with

children, working

> on computers, working with children who are deaf or deaf/blind.

> Orientation and Mobility continues to be a need especially for

pubic trans

> portation, including Boston…

> Patty needs to cook meals independently and make sure she keeps a

healthy

> diet. If Patty doesn't make her own meals she can not just get

served in the

> cafeteria. She has to be taught she can't just eat pastas and

soft foods

> which help in her swallowing but do not keep her healthy. She

needs proteins,

> fruits and veggies.

> Patty needs recreation opportunities.

>

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

>

>