Saturday, April 19, 2014

He Calls Me Friend

Allie was here yesterday. We played outside, she rode her bike, we played Barbies and we colored Easter eggs.

 
 
 
There were a lot of stickers and Allie wanted to use every one! That girl loves her stickers. :)
 
 
 
 
The finished product.
 
 
 
 
I was able to talk with Allie a little bit about the real reason for Easter. Last week she came over and showed me her palm branch she had made at church. She told me the whole story, then I took her out to the backyard and showed her our palm tree. I told her that these were the real branches that they waved when Jesus rode in on the donkey. She was amazed! When she came yesterday, she ran out in the backyard and told me, "This is the real tree, Nana!"
 
We talked about how on Good Friday we remember that Jesus died on the cross for our sins. He did it so we could have a relationship with God the Father. Then... on Sunday we celebrate Jesus rising from the dead! He's alive and wants to be our friend!
 
What a blessing that simple message is. We can have hope because He loves us. We can have peace of mind because He is our Creator and knows us better than we know ourselves. We can have an anchor in the storm because He is our Rock. He's written every day of our lives and we can go to Him with things get tough.
 
Most of all, He calls me friend.
 
I pray you have a very blessed Easter.
 

Monday, April 14, 2014

A Quick Trip to the Store

Beth called me at work today and asked if we could go shopping. She needed to buy her lunchable for Wednesday. So after work we hopped in the car and went to Safeway.

First she picked out some yogurt. My camera makes a very loud click when I take a picture and she immediately spun around, "I heard that!" :) She also bought her lunchable (pizza!) a 7-Up, some fig newtons and ranch dressing. She puts ranch dressing on everything.

 
 
 
Then it was off to the cashier. Just as I snapped the picture, she turned and asked if she should get cash back. I said no because she has $40 in her pocket.
 
 
 
We checked out and were headed to the door when she reminded me, in a somewhat panicked voice, "My medicine!" One of the main reasons we went there was to get her refill of her thyroid medicine. She hung out with the cart while I ran to the back of the store to the pharmacy. Just before we walked out I asked if I could get one more picture.
 
"Suuuure."
 

Friday, April 11, 2014

A Few Pictures!

Yes, I'm learning more each day about how to upload, download and move pictures around on this computer. I took some of Beth the other day in our backyard wearing her new glasses. She really likes them and can see so much better.


She was flipping her hair back. :)

 
 
 
 
 
 
 
 
 
Here is a before photo. These were wire frames.
 
 
 
An update on the production of Grease. She has been rehearsing as... Frenchy, played by Didi Conn in the movie. I'll let you know if she gets the part!!

Friday, April 4, 2014

It Just Wasn't the Same for Beth

I'm working on Beth's scrapbook. It's one of her throughout school, a little late, I know. Eleven years late to be exact. But she'll definitely be surprised when she gets it! :) She was my first and I had no idea what pictures to take or mementos to save for a scrapbook but it's finally coming together.

As I'm doing it, I can't help but compare hers to Sharaya and Diana's books. (Those were done and given to them when they graduated.) Their books are filled with pictures from field trips and choir, basketball and yearbook staff.

Beth's is rather... boring. There were no field trips. No extra-curricular activities.

I'm realizing how much Beth actually missed out on at school. She was always in special ed classes, separated from the rest of the population (except for lunch) and I remember asking the teachers why the seniors in Beth's class never went to Senior Class assemblies. Or had their picture taken with the Senior class. Why they didn't take part in Spirit Week? I was never given a straight answer.

Now I realize the logistics of taking a group of high schoolers who have multiple special needs out to the zoo or a ball game can be overwhelming. Maybe they just didn't have the staff to do it, I get that, but why couldn't they have taken the 3 or 4 Seniors to the Senior Class photo? Or the special Senior Assemblies? Or taken the kids to their class events? I think that has all changed at the high school now but it kind of hurts when I think about the way it was for Beth and her friends.

I've always known Beth missed out on things in school but as I make her scrapbook, each page is a reminder of just how much she missed. And I'm sure it's bothering me more than it will ever bother Beth. She was very happy at school. One thing she did do was take her camera to school and I have lots of photos that she took of her friends and teachers. Lots of unfocused, uncentered pictures, but they're hers and I'm including every one!

Can I just say, keep fighting for your kids to have the same education as their peers. They will all experience it differently but I believe they should all have the experience.

Tuesday, April 1, 2014

What Month is This??

It's been such a long time since I've posted anything. I remember I need to post when I'm in the shower, or riding in the car. Not very convenient places to pull out the laptop...

We're all doing fine. Beth continues to work, and go to karaoke and art and bowling. She is coming up on her 1 year anniversary at work! The longest she's ever held a job! We're so proud of her and are planning a surprise for her.

Her karaoke group is planning a production of Grease, one of Beth's favorite movies! She first wanted to try out for the part of Sandy but is now talking about Patti Simcox, the bouncy cheerleader. Not sure what roll Beth will get but the tryouts begin tomorrow.

I've been working a second job (part time) doing data entry for a friend's business. That's something I could do for hours without even blinking an eye. I LOVE data entry.

I'm still not comfortable with photos on this computer, or on my phone! I've taken pictures of Beth with her new glasses, but just the thought of getting them onto this blog terrifies me. I just don't want to take the time to figure out all the steps. I'm making a photo book for Chuck's sister and I must have spent 2 hours trying to get the photos from my thumb drive to Shutterfly. For the life of me I couldn't figure it out! Finally saved them to my desktop but even THAT didn't work. I was on the verge of tears when I just had to walk away. Chuck looked at it when he got home and figured out I had saved them as Shortcuts. Sigh. I deleted all of them and had to start again. Ugh!

Our basement is flooding, did I tell you? We have a daylight basement and I went down to the craft room to work on a scrapbook and the carpet is soaked. Had a friend come take a look and he couldn't find anything that might be causing it. He went under the house to check pipes but everything is bone dry under there. He suggested moving a downspout from next to the house and divert it so the water drains away from the house, but that was the only thing he saw. We're hoping and praying it's not a cracked foundation.

BUT, it's Spring in the great Northwest! The last couple of days have been sunny and in the high 50's. Flowers are starting to bloom, the air is drying out, it's really been glorious!

I think about you all more than you know! I hope you're doing well! Til next time...

Saturday, March 15, 2014

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!

Saturday, March 8, 2014

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.

Wednesday, February 26, 2014

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!

Friday, February 21, 2014

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.

Friday, February 14, 2014

"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!! :)