Sunday, January 30, 2011

You Know You're Old When.....

Beth was invited to a birthday party this coming weekend. Chuck will be out of town but I told her I'd definitely take her. It'll give me a chance to do some networking and maybe find some friends for her to hang out with.

This morning we were in our Sunday school class waiting for the kids to arrive and Beth pointed to Diana, "Maybe I take her instead." "Take her where Beth?" "To Sarah's birthday." "Hey! I thought I was gonna take you!" She shook her head, "Maybe". "What, you'd rather take your cool sister than your old mom?"


So I stuck my tongue at her.

Friday, January 28, 2011

Fun Photo Friday!

This is Beth and her cousin KJ making cookies.
Beth loves to cook.

She doesn't use the stove alone
and does most of her cooking in the microwave.
But she sometimes helps us with dinner
and is a wiz when it comes to cracking eggs!

When we make cookies, her favorite part....
is licking the beaters! :)

Wednesday, January 26, 2011

To Answer Your Questions: Lenox and No :)

I've had a couple of you ask questions - my first Q&A post! WooHoo!! It's the simple things that make me happy. :)

The first question came from Leah at The Garden of Eagan. She is thinking about getting an alarm clock for Angela. You can read Angela's blog It's My Life Mom here.

Beth's alarm clock is a Lenox Sound. It's got AM/FM Radio and a CD player. I usually set the time for Beth, but she can set the alarm. Hold the Alarm button, then push another for Hour. Then she stops and shakes out her hands. :) A second time she holds the Alarm button and pushes the Minute button. More shaking of the hands. She occasionally double clicks the Set button so I still go down each morning while she's still asleep to check, but 95% of the time, she does it right. The CD player no longer works so we need to get her a new one. I'm a little nervous about that. I'm going to look for one very similar to the one she has.

This one is pretty old, but she knows how to use it. Familiarity is huge in Beth's life. If she's comfortable with something and knows how to use it without help, we tend to keep it until it dies. Using it by herself makes her feel independant. That's so important to her and to us. 

And I just have to show you, she keeps her clock on her nightstand, right below..... Nick!

The other question came from Becca at The Bates Motel. She asked if I knew many older people with Down Syndrome or if most of the blogs I follow have younger kids. The latter is correct. I wonder if most people, well maybe not most, but some people who have older kids with Ds even have blogs. Computers weren't around when Beth was growing up. We got our first home computer when Beth was in Junior High. And it was one of those big, old, gray monsters with a dot matrix printer. I think dot matrix is right, the paper had the holes down the sides and you had to rip the page.... well anyway. I would love to find some blogs from parents who have adult children with Down Syndrome. I only follow two or three but even they are younger than Beth. I feel like the Grammy of the Ds blog world. :)

So if any of you know of blogs from parents of adults with Ds or the even the adults themselves, please let me know. I'd love to get in touch and find out what life has been like for them.  

Thank you for your questions! Makes me feel needed! :)
Have a good day!

Wednesday, January 19, 2011

The CW from DDD Comin' for the ISP

I'm getting ready for Beth's ISP today. Her Individual Support Plan. Her Case Worker, Job Coach and her Coaches supervisor will all be here in a couple of hours to see if Beth is still in need of support from the state.

It's denied each year, (we agree to it) mostly because Beth still lives at home and we still 'support' her. She gets monthly SSI checks (which she gives a part to us for her 'rent') plus she gets her paycheck from work every two weeks. She has plenty of money to live on and she likes living at home. We like it too. :) If she were living in a group home environment, her support would be different.

But once a year we have to sit down and hash out all the details. How does she get around to doctors appointments and to work? Does she shower independantly? Can she cook her own meals? And this one gets me every time.... 'When did she last have her toe nails clipped?" Yep, they wanna know!

So I'm getting ready for their arrival. Bathrooms cleaned... check! Dishes washed.... check! Toe nails clipped.... check! :)

Monday, January 17, 2011

Her First Kiss

Beth desperately wants a first kiss.

She went to the movies today with Diana and they saw Gullivers Travels. I guess there is a kissing scene and Beth didn't like it at all! Not because she didn't like them kissing, but because SHE wanted to be the one getting the kiss.

Before she can have that first kiss, she needs a boyfriend. Before she can have a boyfriend she needs to meet a boy. The problem is.... she is very shy. She's painfully shy! She hardly talks to anyone. At church, at work, at karaoke. She just doesn't talk. It's gonna make it kinda hard to get that first kiss!

It's so hard to see her upset, but there's not much we can do. I'm not one for setting up 'dates' for my kids. And besides, I don't know any 20 something boys with Down Syndrome! :)

Saturday, January 15, 2011

Side Bar Stories

I've recently added links to my side bar about Beth's growing up adventures. You know, potty training, the first time she rode the bus to school, etc.

I write this blog to help you in this journey of raising a child with Down Syndrome. Beth is 26. For those of you with younger kids, I've been there, done that. Bought the t shirt. Cleaned up that mess. Cried those tears. Felt that fear. You're not alone. Anything I can do to help?

Wednesday, January 12, 2011

Snowflakes in Seattle! Oh, and Jello

Last night the snow fell in Seattle. We usually don't get a lot, certainly not like Colorado or Minnesota! But we do get some every year. Last night was beautiful. We turned off all the lights and sat at the kitchen window, watching the snow fall. It's so peaceful and amazingly quiet! I love how there are no cars, no birds, not one sound, yet the world is changing dramatically! I also love how our yard then looks as good as our neighbors. :)

Beth takes a lunchable when she goes to karaoke and art each Wednesday. A lunchable and a Sprite 0. Always. Every Wednesday the same thing. A lunchable and a Sprite 0. Except today. We forgot to get it when we went to the store this week. She was so disappointed last night! She started suggesting things she could do instead; walk to Wendy's and buy lunch (there's a Wendy's across the street from All Aboard, where she does karaoke) or maybe go to the donut shop next door and buy lunch. But we said no to both of those ideas.

I told her that even though lunch was going to be different today, it would still be okay. She would still ride DART, still be with her friends, still sing and do art. The only difference would be her lunch. Diana went through the pantry with her trying to find something but Beth just wasn't interested in any of it. She finally decided to make jello. She could take a small bowl of jello with her to All Aboard. Hey, fat free, sugar free jello? Sounds good to me! So we made jello. Okay, she made jello and I took pictures. :)

Here she's reading the note I leave her every night. Tells her the day, the time to set her alarm and the time her bus will be picking her up. Plus I write about meetings or things happening that night. She likes to know about things ahead of time.

Puttin' 'em in the fridge.

Watching the snow fall.

In the Spring this is a maroon azalea!

Our palm tree - before I brushed off the snow.

Along with the snow, we had howling winds and the power went out for a while!

Hope you all had a good night!

Saturday, January 8, 2011

Why Do I Always Feel So Guilty?

Beth spends most of her time at her apartment. (Our daylight basement.) Her bedroom is down there, her livingroom, kitchenette, etc. So when she comes upstairs and just hangs out, I feel the need to hang with her.

I've been working upstairs, cleaning, doing laundry and about the time I sit at the computer or turn on the TV, that's when she appears and sits at the table. I've tried sitting there with her but she doesn't talk. We sit and listen to each other breathe.

I try to ask questions, "How did you sleep last night?" "Did you have a good day at work?" "What happened at bowling?" I usually get one word answers, "Fine." "Yea'. "Nothin'".

So we sit. And we breathe.

Today I didn't. She sat at the table and I continued watching the Seahawks. And I felt SO guilty! My daughter wants to spend time with me, wants to maybe say something and I'm just sitting here! But I had been cleaning all morning and was sitting down for some lunch. She eventually got on the computer, but that guilt! It's pretty powerful stuff!

Wednesday, January 5, 2011

A Wounded Member of 'The Club'

Yesterday a lady came into the office where I work. My desk sits behind the receptionist so I don't always see the people she helps. The lady Karen, had been in the office for a few minutes when a co-worker whispered in my ear, "Does her son have Down Syndrome?" I told her I hadn't seen her son so I didn't know. Now I was curious. I decided I needed to use the restroom and walked past them on my way. Her son, he looked like a teenager, was laying on the couch and definitely had Ds.

They were still there when I returned so I sat down in the chair and asked if he was her son. I was looking at him and smiling when I asked. She said yes, then asked in a way that made me think she was tired of people always asking about him. "Yes he's my son. Do YOU have a son with Down Syndrome?" When I told her I had a daughter with Down Syndrome, everything changed. She got a big smile on her face and I could see her relax, "You do??"

We sat and talked for quite a while. Matthew is 23 but has the mental capabilities of a 1 year old. She is the single mom of 4 kids, one is an older daughter who moved out of the house as soon as she could, then Matthew plus 19 year old twin boys. She asked me something that sort of caught me off guard, "Are you still married to Beth's father?" The way she said it, it sounded like it was a rare thing in her circle of family and friends. One of her twin sons helps with respite care, but under the respite rules, she is unable to use that time to work or go to school. You could tell she was tired and lonely.

She pulled a G-tube out of the bag and said that people complain when she feeds Matthew in public. (To be honest, I've heard about g-tubes and seen pictures of them but had never seen one in use.) She attached the tube to the plastic piece on his tummy, opened the small jar of liquid food and poured it in. Matthew began to rock back and forth and she handled that tube like a ninja warrior! She kept moving it so he wouldn't knock it or grab it. I was impressed! She said he's used a g-tube since he was two. I asked her why he had it for so long, but she didn't give me a clear answer.

After a while she stood up and got her things together. I brought over Matthews wheelchair as she grabbed his hands and pulled him up from the couch. She walked him (she was backwards, pulling him forward) over to the chair. He walked like an 11 month old taking his first steps, very slow and deliberate. She sort of swung him around and sat him down.

I got her information and want to call her in a few days. That meeting has me more appreciative of Beth and the life we've been given. I've always told people that for having a child with a disability, I actually have it pretty good. Beth's heart has always been healthy, she hasn't been sick very often and for the most part she is self sufficient.

I haven't stopped thinking about Karen and Matthew. Right this minute she's probably feeding him... with the g-tube. Beth is eating her lunch downstairs. The lunch she fixed by herself. Did she give him a bath last night? Beth took her own shower. I probably won't complain anymore about how much shampoo she uses. Did Karen put him in bed? Does he stay in his bed? I bet she had to put him in a clean diaper before she layed him down. (Last night I went downstairs, gave Beth a hug and told her I was going to bed. I'm not sure what time my daughter went to sleep.) 

Saturday, January 1, 2011

Happy New Year Anyway!

In art class this week, Beth made a 2011 hat and brought home a horn. I was excited to take her picture last night in her celebration gear, while toasting at midnight.

At 11:45 I went downstairs to tell her we only had a few minutes and it was time to come up to the livingroom. I got out the wine glasses and the Sierra Mist Cranberry Splash (it was very good!).

At 3 minutes to midnight I went back down...

"Beth come on! It's time to do our toast!"

Chuck and I counted down, toasted, kissed and drank.

Sharaya and Diana had gone to a movie with friends and came in at that moment. We started talking about their evening and laughed a lot. We sat there for a while when Sharaya asked Chuck to take her home. (Ryan was out helping with the youth group at their church.)

It was about 2 AM when Beth came upstairs. She walked into the office,

"Where's Dad?"

"He took Sharaya home."

"Where's Diana?"

"She went to bed."

Beth held her hand to her mouth like she was drinking from a glass.

"Arent we gonna do the thing?"

Oh well! Happy New Year anyway! :)