Let There be Light, Comin' Up on Forty, and Trying Something For the First Time

Hi,

It feels like forever since I've been on here. I've got more time on my hands but I'm sure filling it up fast!

 

Beth's and Sharaya's birthdays are in a couple of weeks so we've been working on that. They're two years apart but Sharaya's is October 6th, and Beth's is the 10th. Beth turns 40 (!!) so we've got a few surprises planned.

I've been making my own greeting cards for many years and for the first time ever I'm going to try selling them. Our church has been hosting a holiday market every October and that's also coming up in a couple of weeks. It's a lot different making them for fun, vs needing a certain amount and having a deadline. I've reserved a little 6' table at the market and I'm trying to figure out how to fill it up. Many of the sellers have two-to-three times that much. I went to Hobby Lobby yesterday and got some fall flower arrangements that match my cards (sunflowers, etc.) and little boxes to display the cards. I'm excited, and nervous at the same time.

 

When Beth isn't at work or bowling or church... she sits at her desk, watches TV and draws. She has stencils and draws the alphabet over and over. It's a common thing among people who have Down Syndrome. Not necessarily drawing, but things with repetition. That's why the same schedule each day works best for them, rather than constant change. Beth is right-handed and her ceiling light is on her right, so she wears a light, like a miners light on her head. Hers is attached to a soft headband. Well I have a lamp at work that I thought she might like, it's got a USB port where she can charge her phone. And it can sit on her left so her right hand won't block the light while she writes. She chose the pink one of course and it arrived the other day.

So far she loves it. I hope it works for her. New things are sometimes hard for her to accept into her already set routines.

I should get started on my day. Even though it's already noon on a Saturday. I'm tellin' ya the days are absolutely flying by! I hope you have a great weekend!

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!