Something to Say

As we have mentioned here before, one of our daughters is profoundly retarded. She doesn’t speak and can only sign approximately 20 words right now. She did have more, but she regressed when we moved last. Shifting environments has a deleterious affect upon the mentally retarded, and it will take us some time to bring her back up to her previous accomplishments.

She does laugh, giggle, cry, pout, vocalize with an “I want that” noise and a distinctly different “I don’t want that and don’t you try to give it to me” noise. She makes up signs. Some of them make sense (the sign she made for ‘tea’ looks like somebody shaking out a teabag), and some of them we have never figured out.

Some of her made up signs I think she made up just to make me look bad. She makes these gestures at strangers, and the strangers look at me and say, “What is she saying?” I have to shrug my shoulders and say I don’t know. In fact, even as I type this I think she must be reading my mind, because she is smirking at me. Perhaps she’s not really reading my mind, but only plotting her next trick.

She hides things. Of course, we always catch her, because she’s so pleased with her tricks that she starts giggling while she slowly makes her way to the hiding place she has in mind for somebody else’s precious belonging. We hear that particular giggle and know we should investigate.

She pinpoints what it is that will particular bothersome to a person, and that’s how she teases that person. For the First Girl and I, she finds our books and removes the bookmarks, losing our places. For a sartorially splendiferous friend, she would find his sartorially splendid leather coat, wave it at him in the manner of a bull fighter flourishing a red cape- and drop it on the floor the moment she got his attention. For a pregnant and easily nauseated friend, she would stand firmly in front of her and put her finger up her nose, holding it there and smirking.

When she decides guests have outstayed their welcome, she brings them their car keys and points to the door.

The last time a qualified professional tested her I.Q. we were told that the results of the test indicated that our daughter could not do anything we had taught her how to do, because she was profoundly retarded. I was asked if there was anything specific I’d been trying to teach her that I needed help with (we homeschool, the testing was through the public school). I said, yes, that I wanted her to learn to undo her seatbelt and wasn’t getting very far. They told me kindly that I probably shouldn’t bother. It was a waste of my time and hers, and was not something she would ever be able to do. We left the appointment and drove home. When we pulled up into the driveway, she undid her seatbelt.

She has Cerebral Palsy, too. In her case it’s very mild. It means she walks very slowly and never runs. It means that some of her difficulty with sign and speech might be the C.P. rather than the retardation, but nobody knows for certain. It means she needs a leg brace. If it were worse, it would mean she could barely communicate at all, since nearly all of her communication is so physical. She needs her hands, her arms, her body language, the ability to turn her head this way and that, the facial muscle control necessary to make her smirks, her grins, her self-satisfied little gloating smiles, and her sad faces, her pouty faces, her gloom and despair they won’t give me a cookie faces. I wonder about people like her who don’t have the physical range of motion and expression she does. What do they wish they could say but can’t?

She used to have a t-shirt with a slogan I loved- it said, “Not being able to speak does not mean I have nothing to say.”

Too many people do not believe that. Too many people think life is all about the mind and think very little of the heart and soul.

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(Untitled)

Overheard at the Common Room:
The Boy: “Whosits! We’re going to do the experience!
JennyAnyDots: “No, we’re going to do the experiment
The Boy: “We’re going to do the experywent.”
JennyAnyDots: “No, Boy, ex-per-i-ment.”
The Boy: “Es-per-i-went.”
JennyAnyDots: *sigh*

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So, we went to the Shedd Aquarium a few days ago. It was wonderful, and here are two pictures:

Those are the absoballyloutly lovelry dolphins, during a training session.

And that is the sea turtle, Nickel. She was badly hurt because a motor boat ran into her, and because of that she has buoyancy problems, which causes her back end to float way higher than her front end.

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Further updates

“I Hope” posted this to the comments sections in the next post down:

There’s a new website with concise information on senate and congressional contacts. www.helpterri.com

It provides phone numbers as well as pre-formed, editable email text to send.

Thanks again for the Proverbs quote. It, sadly, is perfect for this situation.

Here’s the link in hyptertext:

Help Terri

Here’s the Bible verse from Proverbs again, for those who may have missed it the first time:

Prov 24:11-12
Deliver those who are being taken away to death, and those who are staggering to slaughter, O hold {them} back.
If you say, “See, we did not know this,” does He not consider {it} who weighs the hearts? And does He not know {it} who keeps your soul? And will He not render to man according to his work?
(NAS)

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STaying current for Terri

To keep up to date with Terri’s situation (they have stopped feeding her), see:

Terri’s Fight

Blogs for Terri

These blogs also have action items- things you can do to help, in addition to fasting, prayer, and getting the word out.

I thought I had mentioned this before, but a quick hunt didn’t turn it up. Kate Adamson was also diagnosed as being braindead and had her feeding tube removed for eight days. She was aware but unable to communicate. Now she communicates with passion.

See:
Recovered “Vegetative” State Patient Speaks

She Recovered from a Persistant Vegetative State (a transcript from an appearance on the OReilly show)

A Painless Death?

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SueBob’s Website

Suebob posted to the comments of the very long Terri Schiavo post below (the Proverb for the Day entry). Here’s what she says:

Thank you for the link to my blog. If anyone has a question as to my representation of health providers like nursing homes and hospice providers, I invite you to my firm website:

http://www.garloward.com/

I agree that people can easily misrepresent themselves on the internet–so I thought that I would clear up any doubt.

I’m glad she shared that- I had just come back from her website and was going to post her blog again. There’s a good deal worth reading there, especially today.

Please check it out:

SueBob’s Diary

She is good.

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