Patty's needs as an adult

[Guest guest]

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.

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