long again!

[Guest guest]

With all this talk about behavior, vision and executive functioning I went

back and read one or two of my posts. I realize it's so hard for me to really

share Patty. Patty's " behaviors " are definitely CHARGE but because she is

" mild " people just don't see them as behaviors that are interfering to her. But

they are! People don't even see them as behaviors. They can see them as lack

of ability, or things Patty can control but chooses not to. There is always

that fine line with Patty. I wish they could just be easily identifiable to

others. Most of all when she is having difficulty with anxiety and such, her

executive functioning goes out of whack along with everything else and she

appears more disabled then she really is.

Having said that I have to add something else in all this. While it is

wonderful that Kim is going to build her dream for Dylan and CHARGErs that just

doesn't jive with Patty's dream. In fact that would be oppressive to her. Her

dream is to live independently, away from us, in an apartment with a supported

living option. Her dream is to also have a career, appropriate social and

community opportunities, and continue some sort of secondary education being

college or technical training on computers. She has the possibilities,

potential,

and the right to build on her dreams. She is going to have to work twice as

long and twice as hard but she should be allowed to do just that. But she can't

achieve her dream without the understanding of who and all she is. It is

terrifying for me to let go but it's more terrifying for me to hold on to her.

That too would be oppression. I have found often there is " oppression " solely

due to the lack of understanding of CHARGE in relation to each individual.

Just as Kim works so hard to achieve Dylan's dream I do the same for Patty.

We all do the same for our children. We just have different dreams. And I

think that's great! We can't have unrealistic expectations for Patty because

that would place unreasonable demands on her. But we also can't deny her

" abilities " and must continue to make sure we do not deny our obligations to

her.

Nothing about this is easy, but specialists have been learning and paving the

way for our children. There already ARE a few answers out there. These

answers help remove oppression as much as possible. Patty and Dylan are

different

individuals. That's another thing we fight for, individuality.

I still haven't done it. I still haven't really shared " Patty. " But I am

living and fighting for her and her dream. And through this I dream of what is

going to happen in the future for all of you who have younger children. I

hope you all have realistic dreams. But keep that dream one step ahead of what

is occurring to/for your child at that moment. And goodness gracious, find the

specialists in CHARGE to help you all realistically dream.

Bonnie, Mom to a 22, Patty CHARGE 20, and wife to