Monday, July 6, 2015

One In a Million - The Weekend in Pictures

 
On Friday Diana and I took Allie to the beach.
 

 
 
 
I bet the streets of our home town looked a lot like the streets of yours on Saturday!
And like the streets of a million small towns across America this weekend!
 

 
 

 
 
Did Captain America come to your town too?
 
 
 
 
Sharaya drove and Diana & Allie rode in a car from the dealership they work for.
It's hard to tell, but they're in there! :)
 

 
 
 
The view from our seats!

 
 
 
 
 
Then on Sunday, Beth offered to take us out to her favorite restaurant, Old Country Buffet.
(She calls it Pass The Plate.)

 
 
 
 
Chuck, Beth and I had this morning off (Monday) so we went out for yogurt and then down to the water front for a while.  
 



 
I hope you all had a wonderful weekend too!

Wednesday, July 1, 2015

Tic Toc

Beth doesn't know how to tell time. They taught it to her in school and we tried to reinforce it at home, but she just never 'got it'.

She can't tell time, but she loves the clock! Beth likes knowing when to leave, when to eat, when to bathe. We have a few analog clocks around the house but most of them are digital. And it's the digital clocks that Beth understands. Well, 'understand' might be too strong of a word. She reads the numbers and that helps.

I write her notes each day to tell her when her bus will pick her up. We tell her what time she needs to be upstairs so we can go shopping. She wants to know what time we'll be home from work, and what time dinner will be ready.

For many years, Beth would eat lunch at 2:30. Every day. Didn't matter if we had all gone out to a restaurant at noon, on the drive home she would announce, "It's 2:30!" We'd tell her that she just had lunch and she'd respond with, "Oh."

I haven't figured this one out yet but some nights we'll all be playing board games and she'll begin to announce the time, "It's 8:45. It's 8:52. It's 9:04." Okay Beth, is something going to happen? Why are you telling us the time? "I dunno." She just loves the clock.

For this reason, I don't know why it took me so long to figure out I should use the clock when it comes to her TV.

Maybe it's just me, but as the night wears on, I feel the TV should get quieter. Everything else winds down at the end of the day, so the TV should as well. But Beth just gets louder. Not only is her TV blaring, but she's yelling and screaming and laughing and whooping, she's really loud!

For years, I've told her to turn her TV down. Night after night. For years. Literally.

Chuck and I lay in bed at 11:30 at night, tossing and turning, trying to sleep over all the noise. (It doesn't help that her living room is directly below our bedroom!) Then I'm out of bed and headed down the stairs, "Please turn your TV down."

She reluctantly picks up her remote and slowly turns it down. Back upstairs I go.

But recently I got the idea to have her turn her TV down at certain times of the night. I checked her TV one evening to see how loud it was and I think the volume level was 50. Then I asked her if she would turn it down to 45 at 9:30. She said okay!

Then I asked her if at 10:00, she would turn it down to 42.

And to quote Elliot from ET, "It's working!"

Why did it take me so long to figure this out? :)

Monday, June 22, 2015

My Other Girls, They Just Know This Stuff

Beth received a gift card to a local movie theater and all of her friends are talking about Inside Out. Beth REALLY wants to go see that movie! So I told her that we'd look into it when I got home today.

I had her pull up a chair to the computer and showed her the Google list of theaters.

I told her there are different theaters; Lowes, Regal, etc. and her gift card is to Regal. It's the same as if she got a gift card to Target, she couldn't use it at Penney's.

So we looked at the different theaters near our home, but they weren't playing the Inside Out movie. Then we found one a couple cities away, so we looked at all the different times it was playing at that theater.

I explained how we'd have to change her schedule to be able to go to that particular theater, but she wasn't sure she wanted to do that.

So I told her simply, what her options were:
1. We could wait until it's playing at a theater closer to home.
2. We could go to the other theater but she'd miss her karaoke group.
3...

She was quiet for a few seconds then said, "I wanna think 'bout it."

Okay, no problem.

Now, if this were Sharaya and Diana, they would have known where it was playing, bought the tickets on-line and driven us there themselves.

With Beth? Things are just... different.

 
(Thnx Google)

Wednesday, June 17, 2015

Rope Swings and Railroad Tracks

A few nights ago we finished dinner and Diana says, "You wanna go for a hike?" So we hopped in her car and headed for a place known as The Bluff.
 

We'd been here before, in the Fall when the path was covered in gold.

 
 
 
As you come out to the bluff, to the left there's a set of stairs that look inviting and pique your curiosity!
 
 
 
It's a beautiful forest, there are so many birds and you can hear the small river running back and forth on either side as you hike down the trail.
 
 
 
 
 
We walked over small, man-made bridges, plus fallen trees and rocks. The trail would get narrow, then open up again. The temps have been so warm here lately, but it was so cool and beautiful among the trees!
 

 
 
 
About half way down we came across a rope swing!
No. I did not. :)

 
But here's a picture of Diana swinging on it when her, Sharaya and Allie were here a few weeks before!
 
 
 
 
The trail ends up at Puget Sound, right by the railroad tracks.
 

 
 
 
Back up at the top of the bluff, looking down at the forest we just walked through.
It really was a beautiful day for a hike!
 

Wednesday, June 10, 2015

The Young Mom Nodded Yes, But I Know She Didn't Agree With Me

Earlier this year I was asked to help at a MOPS (Mothers of PreSchoolers) program that meets at our church. MOPS reaches out to young moms and gives them a break away from their kids for a couple of hours. They have breakfast, do crafts (really nice, adult, hang-in-the-living-room-worthy crafts!) and spend time talking with other young moms.

A few months into it, I was asked if I could come and help out with MOPPETS. That's the childcare that happens while MOPS is meeting. There's a 4 year old boy M, who has autism and he's becoming too much for the teachers. The class he's in has 13-15 kids and the teachers are struggling to teach and try to help M at the same time. Poor mom was being called out of MOPS time after time because he was throwing tantrums and screaming and sending the rest of the class into chaos. They didn't know what else to do so could I come help and be a one-on-one with M?

Absolutely!!

So back in January I began helping in the classroom, assisting M when needed. He wears headphones to help lessen the noise, but he still would become overwhelmed when the noise level escalated. I was able to take him to our sensory classroom, where he would instantly relax, quiet down and begin to play with the various toys. After a few minutes, we'd head back.

Every other week for the last 6 months, M and I would discover new toys, read about bears and practice playing with other kids. When M was alone, he was an absolute doll, but put him with other kids and his senses just became so overwhelmed he would have a melt down. That's when I stepped him, removed him from class for a few minutes and allowed him to take a breath and relax.

Each week he became more tolerant of the noise level and he stayed in the classroom for longer periods of time. I absolutely LOVED watching him grow and expand his ability to handle stressful situations. Mom would come to pick him up and with tears in her eyes, thank me for allowing her to stay for the whole meeting. One time she told me that M was such a handful at home and she didn't get out much other than MOPS so she looked forward to it every time they'd meet. I could tell she was so overwhelmed with caring for him.

A few times I had to go get her due to a poopy diaper and as we would walk into the room, her face would sink, her smile would disappear and she would look at me like I had punched her in the gut. Then I would tell her that he just needed a change and her face would brighten and she would bounce up from her chair, "Oh! Let me grab my bag!" As they'd come out of the bathroom, he would pull away from her and run back to me, "Let's go see my friends!" A smile would spread across her face and she'd head back to her friends!

I'll tell you, it was exhausting, but I loved doing it so much!! Seeing him change and knowing mom was getting a break, it really did something in my heart.


(This is what I'm supposed to do with my life. Not just MOPPETS, but for families. The Lord has put such a desire in my heart for families with children who have special needs. Specifically those at our church. We not only need to minister to the kids, but also to their parents. We need to offer them friendship, time away, and peace of mind. We need to let them know they are loved and that they're not alone on this journey. This has become such a passion for me and I know I'm e-x-a-c-t-l-y where the Lord wants me.)


Well, Monday was the last MOPS meeting for this year and as mom came to get M, she thanked me again, for allowing her this chance to rest and be with other moms. M was trying to squirm from her grasp and becoming frantic that he didn't have his papers and craft from our class. His voice was getting louder as mom tried to tell him that she had everything and it was time to go. I reached into her bag and pulled out his papers, "See M? Mom has them! It's okay to go home now." He immediately calmed down and got into the back of the stroller. (His baby sister was in the front.)

With tears in her eyes, she looked back at me and said their family was moving to another state. (I had wondered if he would be back next year.) I told her I would miss them and she said, "Yea, now he will be someone elses..." and she paused.

I said, "Joy. He will be someone else's joy."

She pursed her lips and nodded yes, but she didn't say anything more.

With that, she turned and the three of them headed down the hallway to the elevator.

Friday, June 5, 2015

Independence is the Goal but Not Always the Outcome


We strive for independence. We try to teach so she can do it herself one day. We're patient as she struggles and struggles and then one day... success! Independence is achieved in that area! But one area Beth will never have independence in, is transportation.

The DART bus takes her where she needs to go for the most part, but anything spur of the moment? She's dependent on us.

If she gets home from work and remembers she needs something from the store? She has to ask us and hope we're willing to take her.

If she opens her fridge and sees she's out of something, she has to wait until we're going to the store before she can go too.

Have you ever been dependent on someone else for your transportation? It's a very humbling situation to be in. To always be asking, sometimes pleading for them to take you somewhere? You know you're putting them out, asking them to go out of their way to accommodate you and that's so hard!

I've been trying to take her places right when she asks. Even if the last thing I want to go is put my shoes back on, get back in the car and drive somewhere, I'm doing it.

Last night Diana took her to... actually I don't remember where they went. Target? The mall? Wherever they went, it was somewhere fun. As Beth says, "There's shopping, then there's 'shopping for fun'!" I think Beth bought a movie and a CD. Movies and music are her life!

Chuck worked at Centurylink for 19 years and took the Metro bus to work almost every day of those years while I took our van to work. When they closed his department, he got a job driving for Metro! Ironically, he can't take the bus to work anymore. Here in Seattle, you can't take the bus, to drive the bus. Hmm, I did not know that.

So Chuck took the van and I... walked. It's only about a mile but I was very limited in what I wanted to carry with me back and forth to work. Sometimes Diana would drive me, I asked friends at work for rides occasionally, but that was hard to do, ask people for rides. We've since bought a second car but walking back and forth to work reminded me what dependence feels like.

Dependency is hard, but in some ways it's needed in society. Without it, others can't give of themselves. We can get pompous and proud, and being humble goes right out the window. I'm not sure where I'm going with this except to say, I'm trying to be more spontaneous when Beth needs to go somewhere. 

 
 

Friday, May 29, 2015

Her Co-Workers Don't Know What To Think

Beth's job coach, C called me the other day to tell me that Beth absolutely l-o-v-e-s her new job!

At the old location she would fold approximately 250 boxes per 3 hour shift. She's been at this new location now a little over a month and already she's folding 350 boxes in the same 3 hour shift!

C told me that she saw Beth's co-workers eyes get as big as saucers as they watched her fold boxes. When the store manager agreed to hire Beth, she was the first person with special needs to work there and they had no idea what to expect. They were shocked at how many she was folding! She was going so fast, that they were running out of space to put them all! Finally C asked if she should start folding a different size and they said, "Yes please!" They just stood there, watching her work!

She is blowing them away with her ability to do the job and do it well.

Beth is changing the culture where she works and showing that people with special needs are just like everybody else. Capable, eager to work and deserving.

 

Saturday, May 23, 2015

I Know They're Out There, So Where Are They?

Beth, Diana and I went to the grocery store recently and there were so many people that looked at Beth. As I'm walking toward them, I can see their eyes are on her. 'They probably haven't seen anyone with Down Syndrome in a while, if ever,' I thought to myself.

Then I realized I hadn't seen anyone with Down Syndrome in a while either. In fact, I hadn't seen anyone else with Down Syndrome in months! Well, that's not entirely true.

There's one man who works at our grocery store and he and Beth know each other from back in high school. He and I will sometimes talk when I'm there, just about work and his love for music.

When we were out to dinner for Mother's Day, a gentleman came up to our table and waved at Beth. She shyly waved back and I asked her if she knew him and she said, "Not really." He had Ds and looked like he was maybe 40 or even older. He told us that he recognized Beth from Special Olympics. We think he said 'Special Olympics swimming' but Beth was only 9 when she swam in SO, so we're not sure. We talked with him for a minute and then he went back to sit with his family.

So that makes... two. Two people with Down Syndrome in the last, how many months?

I tried looking up the population stats of people with Ds in WA State but couldn't find any data. The Global Down Syndrome Foundation website states, "Surprisingly, the population of people in the United States with Down Syndrome is currently unknown."

I know they're out there. There are a few adults in the All Aboard program, but not a lot. So where are they? How do they spend their days? I'm curious about where they're hiding. :)

Tuesday, May 19, 2015

Mom's Always The Last To Know

Beth's social group All Aboard recently moved to a bigger facility. They've been painting and getting things ready for the kids this week and have been posting pictures on facebook. Since Beth doesn't have a fb page I asked her if she wanted to come take a look at all the photos.

We spent about 10 minutes in front of the computer looking at all the pictures and she pointed out all her friends.

She then heads back downstairs and Diana comes home from work. I start dinner and Diana's checkin' her phone when she yells, "Chickenbutt?!?" (That's the pet name her and Beth have for each other. It really is a term of endearment for them!) Diana runs downstairs and I can hear her and Beth talking for a few minutes.

Diana comes back upstairs and kind of whispers to me, "Did you know Beth has a boyfriend?"

What?!?

"Yea. She was just telling me about him. N sits next to her while they're at All Aboard."

Really?!

"And he holds her hand."

Seriously?!?

"And according to her text, he's kissed her on her head."

Her and I sat up here looking at pictures of all her friends and she never once mentioned him!!

Diana says, "Of course not. You're the mom!"

Beth sent me a text today telling me her score and how she did at bowling. I texted her back and told her that Diana had told me about N and I asked her if he was there today and she wrote back, "Yes crazy mothera!" That was all she wrote!

I came home from work today, she never said a word about him.

We went grocery shopping, still nothing!!

Beth has always wanted a boyfriend and now that she 'might' have one, I don't get to know about him?? Ugh, she's killin' me!! :)

Wednesday, May 13, 2015

The Hard Stuff About Having Down Syndrome

This blog was started as a way to share what we've learned about Down Syndrome and I know I haven't been writing too much about it lately. But that's because our lives are just... our lives. Down Syndrome isn't always the focus anymore because I realize we're the ones with the issues, not Beth.

There was one day recently where the speed at which Beth lives was really frustrating me. We were at the grocery store and I told her I had a lot to buy and only a short time to buy it so we were gonna have to hustle. She got her cart and I got mine. As we're shopping I'm thinking about everything I need to buy and crossing things off my list... We get to the cashier and she begins 'helping' me pull my stuff out of the cart, one by one by one. I took a deep breath and realized she really was moving as fast as she could. Faster than her normal speed. So I thanked her and moved up to pay the cashier. After I paid I moved out to the aisle to give her room at the cashier. She hollered at me, "Hey!" really loud and it made the cashier and bagger laugh. I told her I wasn't leaving yet and that's when she asked if she could get some cash back. I helped her through the process and then we left.

As we're headed to the car she tells me, "I really hustled, huh?" She was so proud of herself and yet I had been so focused on getting everything done that I hadn't really noticed. But she really DID move fast in that store. We left the house, bought a lot of groceries and were on our way home again in just under an hour. I put my arm around her and told her that I was proud of her. That she did great!

So, I'm finding that a lot of the stuff that makes having Down Syndrome hard, isn't always because of Beth. Too often it's because of me. I'm the one that makes it hard.

I'm impatient. I'm frustrated. I have a short temper. My expectations are wrong.

Beth lives her life happily, going about her day to day activities with a smile on her face knowing it's gonna be a good day.

I go about my life angry that someone cut me off on the freeway. Frustrated that the computer is too slow. Worried about tomorrow.

Beth has her routine and is happy to have it. She doesn't have any enemies. No regrets. She's content with her life and the people and things in it.

What a great way to live.