Wednesday, January 22, 2014

A Recent Text

Beth likes to walk to a local drug store to buy markers or whatever. It's about 3/4 of a mile from our house and it's downhill all the way there so you know what that means for the walk back. :) She goes there a lot in the summer but it's winter here now so it gets dark at 4PM.

Here is a recent conversation we had via text:

B: Can I go to Bartell Drugs to get my stuff please?

Me: I will take you after work. Do not go by yourself.

B: Okay fine. And you no fun.


It seems the older I get, the less fun I am. :)

Monday, January 20, 2014

If I Could Go Back and Do It Again... Language

Beth doesn't know how to hold a conversation.

I know that may sound strange to some, so let me explain.

Her main vocabulary consists of:
"Now what?" (If you're doing something when she walks in.)
"I knew it." (If you get something to eat or drink or clean up a spill...)
"I don't know." (Her answer to almost. every. question.)

She's gotten to the point where she states the obvious. If I get up to do dishes, she will ask, "Are you gonna do dishes?" If I'm putting on makeup, "Oh yea. Doin' your makeup."

I've noticed recently she doesn't know how to have a real, deep down, conversation. She will ask questions: "Are we going to church tonight?" "Can we go shopping today?"

And we ask her questions: "How was work tonight?" What did you do with the kids today?" And those are usually met with two or three word sentences.

Now, she is getting better and I think that's what caught my attention. She is trying to use more words and engage in conversation. I have to read her lips when she speaks or I can't understand her. And I'm always asking her to repeat it. Sometimes I give excuses like the dishwasher is running or I couldn't hear her over the radio. The other day she even told me, "I think your hearing is bad." I didn't know if I should tell her the truth, or be excited about the sentence she just said!"

And all this has me realizing that we never taught her how to have a conversation. I mean, our other girls just learned it by watching and doing I guess, but Beth just, for whatever reason hasn't learned that skill. I automatically think back to when she was growing up and try to pinpoint the moment we missed. Or the time in her life that we should have been doing it. At 7 or 8 years old? Or would she have needed to be older? And how should we have done it? Have mock conversations with her, trying to think of different scenerios? While we were out, we'd show her how to order from a menu, and then be patient as she said it herself; we'd look at her so the waitress would look at her instead of us, things like that. But basic, everyday conversation? We missed it completely.

She took speech and language classes all through school, were they inadequate? Or was it over her head? Is 'having a conversation' something they even teach in OT? Why didn't I think of this during all those IEP meetings?

And language is SO important in life! As you well know. Speech can be everything. We hope and pray our children learn the words and learn to say them. But if they don't know how to use those words in conversation, what good are they?

I'm not sure what the answer is. Not sure what we should have done differently. But if I could go back and do it again, I'd definitely make that a priority in her life.

Wednesday, January 15, 2014

"Those People"

The parking where Diana works can be minimal sometimes so she occasionally parks a couple blocks away and walks.

Today she was met by a young man about 18 who asked her if she was the one driving the van with the Down Syndrome Awareness ribbon on it. She told him yes and he said he was interested in talking about those people.

She told him she had a sister who has Ds and he said he thought they were a drain on society.

Wait, what?!?

He asked her if she could 'do anything'?

Seriously?!?

Diana told him that yes, she does things and even has a job, which she noticed he didn't seem to as it was the middle of the day and he was just hanging around on the sidewalk.

He walked with her the two blocks to her work and then had the gall to ask for her number. She obviously declined.

He then walked away.



There's a lot of things I could type here. Some are not nice and may shock my friends and family, so I'll refrain. But I wonder where he learned that mindset, that idea that people with Down Syndrome can't do anything. Does he live under a rock? Has he never seen anyone who has Down Syndrome? He really thinks they can't do anything??? It's sad and it's false and it's heartbreaking.

I know we've come a long way with awareness and acceptance since Beth was born, but obviously we haven't come far enough.

Sunday, January 12, 2014

The Longest Time

I do believe this is the longest I've gone without writing a post. My sister arrived on Christmas Eve and was here for more than 2 weeks. We'd get up in the morning, she'd fix coffee and I'd have tea, then we'd sit at the kitchen table talking for hours. She left on Friday night and I have to go back to work tomorrow. Ugh. Can't believe it's over.

Our computer died. That was fun. Although we did go buy a new one yesterday! This new laptop has a touch screen and I've really enjoyed working on it. We are learning Windows 8 and the keyboard has lights behind it. It really is nice.

I got a new smart phone for Christmas and have been learning how to use it. Technology sure is an interesting thing. When it works, it's wonderful. But when you don't know how to use it...

I have a few pictures for you... but can't figure out how to get them from my phone to my blog. My first instinct is to plug my phone into the computer, upload them... I still have so much to learn. :)