Blossoming

Lately people have been coming up to Chuck and I, telling us about their conversations with Beth. Some we know fairly well, others we barely know! But Beth is going around engaging people in conversation, connecting with them...

We have a small coffee shop at church and every Sunday Beth buys a drink. She usually just goes up, orders her drink and leaves. Recently the barista, P, asked her how bowling is going and if she ever got her bowling shoes. (P is also a co-worker who I had told about waiting 2 months for the shoes to come in...) Beth started telling her all about the shoes and even pulled out her phone to show her pictures! P had never seen Beth open up to her like that before!

Chuck and I are in a small group during the week and one of the other couples has attended our church for quite a while but we've never hung out together. Don't really know them very well. One night at our group J tells me that Beth came up to her and another lady on a Sunday morning and announced, "I'm back!!" The two ladies nervously looked at each other not really knowing what she was talking about and asked her what she meant. Beth told them that she had been sick and had missed the previous Sunday. Oh! They asked her how she was doing and she told them all about it!

We have another friend, C, who we know well, they've been to our house and we've been to theirs. Well, one day she decided to give Beth her phone number and told her that she could text her anytime. She hasn't regretted it... so far. :) She'll come tell me about some of the texts she gets, long, conversation type texts. Texts that I've never gotten from Beth! Mine are usually just a few words, but not with C! C gets full conversations about work and art class...

This has been so encouraging for us! Beth was like this growing up, talkative, friendly, and it's so good to see her coming back out of her shell!

Isolated

When I think back to when Beth was born, I get the feeling of isolation. Not that we were isolated necessarily, but compared to today I remember it as a lonely, isolating time.

I've written about this before, how if you needed help with something you picked up the phone and called. If you were curious about your child's diagnosis, you went to the library and looked through the card catalog for the books about children with special needs. Or in our case, 'Mongoloid children.' Yes, it was called that even as recent as the 80's.

My 1992 Websters Dictionary says, "Down's Syndrome: mongolism, a type of congenital mental retardation." That's what we had to base our ideas of the future on.

Nowadays parents ask a question on Facebook, "My child is doing such and such, do your children do this? What experience have you had with this?" And in minutes there is a thread of comments a mile long. Encouragement, resources, referrals.

I sometimes feel a little sad that we didn't have those kinds of connections. I wonder how different Beth's life would be if we had.

I guess we're coming up on World Down Syndrome Day. I said that slowly, out loud to myself the other day. World Down Syndrome Day. World. The United Nations has declared it so.

The United Nations!

My first thought was, 'the United Nations know we exist??' This is so mind boggling to me. I think of when Beth was 3 and she was playing in the front yard with the neighbor kids. The United Nations was the last thing on my mind. Let alone the world. I was just living day by day, trying to navigate this world of special needs. What did I need to do tomorrow? Why did I need to do it and what impact would it have on my daughter?

But I guess some parents decided more people needed to know about our kids who have special needs. They've advocated and lobbied for support and acceptance and awareness. Something I could never do, but am so thankful that they did. And now we have World Down Syndrome Day. That's just remarkable. Such an accomplishment.

Well done parents. Well done.

Copy Cat

Kids imitate. They watch and they follow to help them know what to do and how to act. Beth has this down to a science.

If we're in the car on a warm summer day and I happen to roll my window down? She will also roll her window down. Then she'll study my window and roll hers up about 1/2 inch. Then she'll look at mine again and roll hers down 1/4 of an inch... it has to be exactly the same.

The other day we were sitting at the table having breakfast and I picked up my cup to take a sip of tea and she picked up her cup. I held mine in my hand as I looked out the window and she just kept sort of glancing over at me. I took another sip and so did she.

I have to be so careful about the things I say or do!

It Made Me Realize Just How Far She's Come

We had Beth's annual assessment this week. The Support Intensity Scale assessment.

Beth's case worker comes to the house and they ask all kinds of questions about all kinds of things. Some of them seem a little strange, but they need to find out exactly how much support she needs for everyday life. That way they can decide how much financial aid to give her.

There are questions about health and safety: 'if Beth was home alone and there was a fire, would she know what to do?' (She told him she'd run out of the house and call 911.) He seemed impressed.

Protection and advocacy: 'if someone came to the door and told you they'd give you money if you gave them your debit card, what would you do?' (She said she wouldn't open the door. She'd just stay in her room.)

Community living: 'if she was summoned for jury duty, would she be able to serve or would she need help?' (I told him she had been summoned and we both went to the courthouse and they dismissed her from serving.) (Beth wouldn't have been able to serve. She just doesn't have the mental capacity.) He sounded surprised that she had actually been summoned. He's was young and has probably asked that question of a lot of clients and didn't expect to hear that answer. :)

They need to know if she needs help taking a shower or getting dressed; getting on and off the bus; making friends. Does she ask for help at work, is she able to read a menu... he was here for an hour asking question after question.

He has the notes from previous years assessments and I was really surprised at how much Beth has changed the last couple of years. She's no longer depressed. She is doing phenomenally at work. She is becoming more outgoing at church.

(Chuck and I are in a home group and one of the ladies told us that Beth came up to her and gave her a hug one Sunday! We don't even know J very well, but Beth has adopted her! Then J told us that Beth went up to her another time and announced, "I'm back!" and proceeded to tell her that she had been sick and had missed church... my mouth fell to the floor!) Our Beth!

It was a very good assessment this year. She's come such a long way and we hadn't even noticed!After it was over, Beth and I went out to lunch and then did a little shopping at an antique store not far from our house. Not a bad way to spend a Wednesday.

"It's Just Not Me."

Okay, I took your advice and decided to email the pictures to myself. I looked at my phone and realized I didn't know HOW to email. :)

Diana helped me... no that's not true. Diana did it all, then showed me what I needed to do. Gotta be honest here! She emailed the picture, then showed me how to do it and I did it! I emailed a picture to myself, woohoo!

Now my pictures are saved in my Pictures Library on my computer. I am now going to attempt to retrieve them from the library and post them here.

Here goes!

Well... it brought up Sky Drive, which is where I've gone at times to view my pictures but when I clicked on the Pictures link, it said there was nothing there. Sigh.


I think I figured it out! Although I hit a few links so hopefully I'll remember what I did next time! Dontcha love old people! :)

Here is the long awaited picture of Beth with her pink hair. In this one she's looking at my sister and smiling. In the other photos she's looking at me, and so she's not smiling and they look like mug shots. I'm not posting them because they are still on my phone and it will take me weeks to get them uploaded here. :)

 

When I asked Beth how she liked having pink hair, she didn't say anything. I told her that she could wear it that way when she goes bowling and she said, "No thanks. It's just not me."

 

 



 

Beth had an eye appointment earlier this week. She has severe astigmatism in her right eye which is why it floats toward her nose. It shows up a lot in pictures. Her prescription has changed slightly so she'll be getting new glasses. She picked out some plastic frames that are very different from the metal frames she's been wearing. They look really good on her though. I thought they looked very natural on her. I'll try to get a picture of her when they come in. By the time I get it uploaded, you should see it in about 6 months!! :)

Technologically Challenged

I've been putting off writing on here because there is a photo I want to upload of Beth. (My sister brought up a box of temporary hair coloring and we tried a few strands on Beth's hair.) But we have a new computer and I've been trying to learn Windows 8 and just the thought of uploading a photo in this new format makes me nervous! :)

We also got smart phones. For the first time ever, I'm able to go on-line with my phone, take pictures, upload them to facebook and even send an e-mail!! With! My! Phone! I know, I'm really dating myself.

But I decided to Just! Do! It! Upload the picture and write a blog post!

I got out my camera but couldn't find the chord. I looked and looked but it wasn't where it was supposed to be: in the little cloth pouch by the computer. I finally found it under the computer desk, in the bin that holds all of our chords and chargers and... I got everything hooked up but couldn't for the life of me find the photo! I looked in a few folders but it just wasn't there.

Then I remembered.

I took the picture with my phone.

Ummm, how do I get pictures from my phone to my computer? Does my phone have a chord that I plug into the computer? I think I can upload the photo directly from my phone to my blog, but I have no idea how to do that yet!

Sorry guys. You're gonna have to wait a while longer to see that picture!

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. :)

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.

"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.

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. :)