Friday, September 26, 2014

This is Our Life Now

As Beth approaches 30, I'm reminded of all the things our future might hold.

I go to Facebook and read blogs about the milestones of children who have Down Syndrome, those who are struggling to find their place in school, the issues parents have with their child's IEP, who to invite to the birthday party, tying shoes, riding bikes, making friends... all those things that used to be SO important to us.

But that was many years ago.

It almost seems like a different life. A different family.

Now my thoughts are on aging and everything that comes with it. What issues will we face? What will Beth's 'senior years' look like?

I'm part of a group on fb called IDSC - Parents/Caregivers of Teens/Adults. IDSC stands for International Down Syndrome Coalition. It deals with all the things that come with having - or caring for - an older child with Ds.

I find this is where I spend a lot of my time. This is where were are now. We're past puberty, past all the school drama and fighting for Beth's rights, past all the growing up years.

This is our life now. From here on out, we deal with employment, health, social services.

And aging.

As nervous as all of you are about the growing up years, I'm just as nervous about the aging process for Beth. And I'm a little shocked at how fast it arrived.

Sunday, September 21, 2014

If You Read This Post, The Words Might Get Stuck in Your Head! But it'll be Worth It

Saturday was the big day, Beth played Frenchie in a production of Grease Lightening. (I guess, due to copyright laws, they couldn't officially call it Grease, but that's what it was.) :)

Beth did great! All the kids were wonderful! Kids. They're all adults but they'll always be our kids.
Sometimes it was hard to hear them because there was no microphone but we all know Grease by heart anyway.

The musical numbers were the best! Everyone sang, including the audience! The kids all had a great time, they laughed and danced, such a great way to spend the afternoon!

I have SO many pictures, but I'll just share a few.

Sonny getting stopped in the hallway by Principal McGee
"Yes ma'am, I mean no ma'am, I mean yes ma'am."
"Go Greased Lightening, you're burnin' up the heat lamp trials!"
The sleep over at Frenchies:
"Have you ever had a drink, Sandy?"
Everyone in the malt shop
"My parents want to invite you over for tea."
"I don't drink tea."
Frenchie's guardian angel
"Beauty school drop out, go back to high school."
(Yes that's Beth.)

"Doin' the hand jive!!"
The final school announcements
"Oh Blanche, stop blubbering!"
The big finale
"We go together like rama lama lama ka dinga dinga dong.
Remembered forever as
shoobop shoo wadda wadda yippity boom de boom..."


And if you now have the words to that song stuck in your head,
you're welcome. :)
Grease is the Word!

Saturday, September 13, 2014

Trying to Navigate Change with Someone Who Thrives on Consistancy

I've been looking at this blank page for a few minutes, knowing I need to write something but honestly, I got nothin'. Let me go back to the beginning of the week and see if anything develops. :)

Beth and I did our usual grocery shopping. I don't know if I've ever told you what she buys. It's usually the same thing each week. Two frozen dinners, (she has certain days of the week that she eats these for lunch) fat free fig newtons, raisins, syrup, one lunchable and a Sprite (for Wednesdays when she's gone all day) the chips... that's new. I really didn't notice them when I took the picture. Hmm. I wonder why she bought those?

There is a rhyme and reason for everything in Beth's life. When she was born, they told us that we'd need to be consistent with our teaching and discipline but they never said anything about the rituals and patterns she would create over time. Course, 30 years ago they didn't know nearly the amount they know now about people with Down Syndrome. It amazes me the advances they've made.
(Beth just came upstairs so I asked her why she bought the chips. "My sister. They're her favorite." Now, Beth hasn't had these before that I'm aware of and she said she hasn't tried them yet, but that would explain it. Diana must have told her as they walked past them in the store one day. Beth rarely changes her routine. There really is reason for everything.)
Her weekly schedule is what it is and should remain that way forever. If Beth has her way, that is. But we all know life doesn't stay the same. Changes come, we adapt, okay sometimes we rebel, but we try to adapt because change is a part of life. Trying to navigate that change with someone who doesn't adapt is very tricky. It takes planning and patience. Have you ever tried to plan for change before it happens? Usually all we can do is reassure her and list the steps of events about to happen.
I don't know how many of you watch Dora the Explorer but that program presents a challenge "We must get the baby bird back to it's mother!" then lists the steps to achieve that goal: "We have to go over the bridge, through the forest and across the river! Bridge, forest, river! Bridge, forest, river!" Can I just say, this works brilliantly for my adult daughter who has Down Syndrome! The simple steps, the rhythm of repetition and the glorious goal at the end!  
A problem arises when you come out of the other end of the forest and there is a huge mountain between you and the river. A mountain that clearly wasn't on the map! When was this map made anyway? There's no mountain here! And good luck trying to get that thing folded back up again... stupid map.
Okay, where was I? Oh yea, the mountain. The rhythm has been thrown off and panic begins to set in. That's when, as a parent of a child with Down Syndrome, you have to gently add a new step, create a new rhythm and make THAT the new normal. Over and over and over.
Thankfully the only change that has occurred for her lately is the play she'll be in next week, Grease Lightening. She decided she didn't want to add Special Olympics bowling on top of that so we didn't go to the first practice. Her coach called though and said she they can use her average from last year for the couple of weeks she'll miss, so she decided to be in Grease next week, and then to go Special Olympics bowling after that.
So... Grease, bowling, gold medal! Grease, bowling, gold medal!

Sunday, September 7, 2014

Overwhelmed... and Trying to Remember to Breathe

I've been thinking about this blog for the last week. I know I've needed to write and I've wondered about what to write. I started this blog as a way to help parents of kids who have Down Syndrome. My daughter is grown and...

See, even that, I just want to erase it. My mind has been jumbled lately and I've had a hard time focusing. I wrote a great post in my head the other day, while laying in bed. Then I fell asleep for the night and when I woke up... it was gone. It was relevant, current, exactly what many moms and dads are going through right now... and at the time I remember thinking it was the perfect post but do you think I can remember now, what it was about? Not even a little.

Chuck is losing his job in a few weeks. The company he's been with for 19 years is closing his department and he'll be out of work by the end of the month. He's been applying for jobs and going on interviews but hasn't received any offers yet. I know this hasn't taken God by surprise. Every day of our lives have been written by the Lord, but it took us by surprise and it's been hard not to freak out. When I let myself really think about it, I start to panic so I have to always keep in mind that God is in control and He has a plan for us.

Part of my job is event planning for our business meetings. These events are full time in themselves but I still have to make time to do my regular job. Today was our business meeting (we have 3 a year) and this week has been so stressful for me. Our linen order was never delivered so I went in on my day off and spent a couple of hours on the phone with the linen service company. Come to find out, we did put in an order, but their rep is on an extended leave and never told us, so our order has been sitting in her inbox. Thankfully the linens arrived in time. Plus the attendance exploded this time and instead of setting the room for 85, we had to prepare for 190. Just a little stressful to say the least.

Our Special Connections ministry hasn't been going as I hoped. The Lord is showing me things I need to be doing differently and I've been in a lot of prayer over that. So many additional things that I really don't think I can do. But He reminds me that it's not me doing it, it's Him working through me. We are His hands and feet and if I truly believe that, I have to let Him do His work, using me where He needs me. He will sustain me and strengthen me when I need it.

For 2 years now, Chuck has been working two jobs so I'm doing 99% of the work around the house. Cooking, cleaning, grocery shopping, laundry, yard work... it's become so exhausting. Day in and day out. And Chuck, some days he leaves here at 6 AM and doesn't get home until midnight. Only to be up and gone the next morning at 6:00. This last stint, he worked 13 days straight. (In fact, he's at work right now, while I type this!) So by the time he does get an evening off, he's thoroughly worn out. His second job is very part time and even if he goes to work there full time, it won't even begin to make up for the money he makes at his main job. And because he is working part time there, we're not sure he can get unemployment.

I'm trying to be careful and not get so busy that I burn out. I know too many people that can't say no and it really begins to change them. You can become bitter and angry by always saying yes so I'm truly cautious of that. I've never been one to over do it, but lately we seem to be getting so busy. Some days it seems the stress level is through the roof.

I'm trying to remember to breathe. And to stop and smell the flowers. To really take the time to enjoy what the Lord has given us. Our home, our family and friends. We really are blessed. When I think of what others are going through, single moms, women whose husbands are gone weeks at a time, kids in and out of the hospital, I know my life isn't that difficult.

But sometimes we get so caught up in our circumstances, it's hard to see the blessings.

Monday, September 1, 2014

"I Can't Believe It"

This girl...

is going to be 30 next month!
Where did the time go?!?
Even she's walking around the house saying, "I can't believe it. Ina be 30."