Re: Patty's Home!!!

[Guest guest]

Way to go Patty and Patty's family. !!!!!!!!!!!!!!!!

Bonnie, I agree about the education issue. 's medical issues seemed to

overshadow her education as well. She didn't have the CHARGE identification

either. I had to search for preschool programs on my own but found one that she

started the week of her second birthday. I spent lots of time educating her

small school about a mainstreaming hearing imparied student. I bought books that

went from teacher to teacher. She was at that time the only hearing

impared/medically fragile child the school had ever seen. With our urgings she

recieved a good education. Fortunatly times have changed and people have list

like this for support.

update. has decided to change majors from dance eduction to

nursing. She has offically changed for next year.

Nursing was a second choice in high school. We couldn't be prouder. She will be

and excellent nurse because of her personal experince.

Lynn

Patty's Home!!!

Hi all,

We picked up Patty this weekend and brought her to her new home with us here

in the Boston, MA area. She has completed the Helen Keller National Center

training and is now looking for a job around here. She is hopefully going to

work at Pet-CO. We'll see. I am also trying to get her set up with services

here in this state-Deaf/Blind- so she can have orientation and mobility,

vocation, and just to find places where she can be social like she was at

HKNC.

HKNC was absolutely fabulous. Each and every staff member was

exceptional as well. I couldn't say more about the training and experiences

she

received there. HKNC is for older individuals, Perkins is for children who

are

school age. These two are the best in the field. They should all be used for

our CHARGE children.

I couldn't be more proud of Patty. (Or a as well) She has

accomplished what many said was impossible. It is her determination and drive

that just keeps going. Though it was hard to get her this far. We did have

to

push and shove, both her and the system, but look at her now! I just wonder

what is in store next.

I do have a speech to make though, as always. Patty has come miles,

and has miles to go. Even though we have been told she is a mild CHARGEer she

has had all those illnesses, all those medical issues, all those... But here

she is now an adult. We focused on education right from the very beginning.

Thank God. Time went by so quickly. I never thought it would but it did. My

point is that all of us focus on our children's health because we have to yet

our children's education is just as extremely important. And it is important

right from the very beginning. Early intervention is vital. What are we

saving our children's lives for if we aren't also working on their development

as

well. There is so much to our children that I believe one cannot be separated

from another. Patty didn't learn when she had medical issues. Sometimes she

regressed in one area when she was developing in another. It was

interesting. Understanding her, her behaviors, her learning potential, her

joys and her

sadness helped in helping her to be healthy, develop as far and she could, and

be proud of herself along the way. Sometimes it seemed like we were taking

baby steps. Other times I couldn't believe how fast Pat was learning.

It was also sometimes a horrendous battle to get " specialists " or so

they called themselves in our school system in town to understand Patty as a

whole person. It wasn't until Perkins eval when she was 14 that I found true

SPECIALISTS. They just know and did it right-for Patty! Not for us and not

for

the school system, but for Patty. Then she graduated high school and there

were still things she missed learning, like how to cross a city street, how to

socialize with " true " friends, how to be more independent. That is where HKNC

stepped in. They are the true SPECIALISTS for adults.

Our CHARGE group should learn from them. It is vital for all our

children. And then we must not forget our children's behaviors and

understanding

them and how it impacts the rest of their lives as well. Tim will hopefully

be done with the next step in this soon. Then they can put more of it

together.

So there is my speech. Education, education, education. That means

different things for different children. Expressing a need such as being

hungry is

education, doing math is education, learning how to grasp a toy is education,

learning appropriate social skills is education.

Thanks to Perkins in MA and HKNC in NY Patty has experienced more. They are

gifts. They are gifts for all our children.

Bonnie,

Mom to a 21, Patty CHARGE 19 and wife to

[Guest guest]

I've forgotten. How long was Patty at Helen Keller? We're still wondering

about doing that. We learned day-before-yesterday that we've won our case in

the Federal court of appeals, so is safe at Perkins (even if state

appeals, she would " age out " ) before any changes could be made. She had an

adjustment to make at Perkins, and the question, of course, is whether it

would be too hard on her to do the same thing at H.K. I've really got to get

busy on transition issues... Let me know more about H.K. Just feel free to

email me personally. Thanks.

Martha