Martha, Ellen, Chantelle,....

[Guest guest]

Martha, Chantelle, Ellen,....

I have been trying to figure out how to put into words what I have been

finding out this past week. You guys are hitting it right on the spot and

evoking

emotions within me. I've kind of been insulted lately. I can feel in my

bones that this will be a long post so bare with me.

Lately I have had the opportunity to chat with people and " friends " from the

town we moved from. I've also met with both friends and strangers in the

deaf/blind world. Through these conversations there have often been many

" slips "

about me as a mother for Patty. Apparently word is out there that I am a

" fighter " and won't back down. Apparently there is still discussion that I

don't

accept Patty's disabilities. UGH!!!!! I hated that statement then and I hate

it now. It's even been said that there is a nice political way to push for a

child's rights and then there's my way to do it. How insulting is that!

My gosh that hurt me. Some of these statements were from parents (I thought

were my friends) who have gone to due process for their children and won. Yet

I never really told them how hard it was for Patty to receive services. But

I didn't go to due process because I was afraid of that " fight " and what it

would do to Patty. I tried to keep it " friendly. " The worse part of this is it

is all gossip. How can that gossip continue even having moved out of the

state? And yet even worse is that this assumption about me has grown now into

the adult world.

Sure I fought for Patty. You betcha. I had to as no one else did. Sure I

tried to be nice, I tried to work together, I tried every avenue there was.

But with that I also wouldn't accept or allow Patty to receive an inappropriate

education-ever. I knew programs, I knew laws, I knew her rights, and more

importantly I knew when I was being manipulated or being lied to. Sure I

questioned authoritarian figures-when they were obviously wrong. It wasn't

insulting. It was just facts. If I allowed what they offered for Patty she

never

would have come this far. We lived a life of " I told you so! " We still do.

I made sure that I complimented those who did great jobs. I sent flowers and

thank you cards.... But when something was wrong I did not allow that to

continue. I brought in people to teach about CHARGE, I brought in a phenomenal

person to do a " Futures Personal Plan, " we called in an outside specialist to be

a mediator, we did it all the right way, and the kind way. Know what they

said-It was all a waste of their time.

When being pushed into the corner though you bet I would not allow that

either. How is that being an aggressive person? How is truth and honesty being

hard? How is it that being a parent of a child who has disabilities and

advocating for their rights being wrong? If I did all of these and still am

called

pushy, hard, stubborn, then I guess I'll take that title.

If I give honesty and respect then I expect the same. More than that I

expect respect to/for/with my child. I expected it then, now and I will expect

it

always. I had expected that those who worked with her would learn about her.

That's their job. No more and no less. If someone isn't doing their job

then I cannot be at fault no matter how hard they try. Unbelievably when Patty

graduated we even had a specialist who said with more children who have CHARGE

now coming up in the ranks they thought that they should learn more about it.

What about learning about my child when they were working with her?

Know where I found the help? Not only from my own research, education and

learning processes but from the Regular Ed teachers. That continued to the day

she graduated-with a regular diploma and on time. We had the best educators

in the state, and the worse administrator there was. SPED wasn't accepting of

Patty. Educators were. It is the people who were WRONG that apparently

continue to complain. But my gosh we moved away and moved on. I am surprised

that

they haven't. I do have to harden my heart with things like that or it would

sadden me too much.

Patty proved her potential and accomplished great things on her own, and

continues to but still they can't see it. She did great things not because of

them, but often in spite of them. Do they think we are making it up? Gosh it

hurts that even now they still don't believe in her. They obviously won't get

it

because that just might mean they were wrong.

No, Martha, I am not going away. How in the world can I? I am a mother. It

would be so easy to give up and back down. It would be so easy not to care.

It would be so easy to........... Oh sometimes I wish I could.

But I can't. Patty deserves a life as a respected human being. No more, no

less. Each and every one of our children do. CHARGE doesn't go away. I want

to scream that from the top of the world. Patty doesn't go away and so I

cannot go away. That doesn't mean I am not a nice person. My gosh I think I

care too much about peoples feelings, even mean people. But I cannot allow my

daughter to be denied her rights. I cannot allow my daughter to sit at home and

not have a fulfilling life-whatever that may be for her. I cannot allow

those who are out there and not fighting for our children, though it is their

job,

to take the easy way out.

Know why people think we are pushy? Because the parents out here are worn

down. They are tired. They are scared. They are alone. And they don't know

better. It is only with information that we can achieve things for our

children. So if they want to assume anything about us now, I guess they can.

Sure I

am pushy. I push for truth. I push for respect. I push for equality. I

push for services. I push for human acceptance. I push for what is known to be

right.

Martha, I am tired too but I can't give up. I am tired of the " I told you

so " but still I have to go on.

I push for Patty.

You go on and push for . Do the right thing, for the right reason.

It's called CHARGE! But behind the CHARGE are people. Gosh darn it they are

people!

Chantelle, Belinda, Ellen, Chip, Patty, .......Don't give up. Keep on going

positively down this road. If people don't accept you, move on. There are

many, many others who will.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to