Beth's Case Worker

Every January since Beth graduated from high school we have an assessment done with Beth's case worker. They come to the house and go over a list of things that Beth is doing or is unable to do. 

Does she cook her own meals? (In the microwave, yes)

Does she need help getting dressed? (No)

Can she make her own doctor's appointments? (No)

Does she take medication on her own? (Yes)

How would she respond in an emergency? (Not sure)

Can she take public transportation alone? (No)

Pages and pages of questions, all determining her abilities which in turn determines how much money she would receive from DDD - The Department of Developmental Disabilities.

And every year they ask if Beth needs extra assistance. And every year I say no, we're doing well.

But the last six months or so I've been thinking how Beth might respond better to someone else helping her with her food choices, her activity levels, and hygiene. No forty year old wants their mom telling them what to eat or when to go to bed at night.

T has been her case worker for many years now and we really liked him. I emailed him earlier this year to ask about changing her waiver. The waivers represent different levels of assistance. That's when he told me he's moved to Eastern WA and Beth will be getting a new CW. It wasn't easy telling Beth that news.

I got a call a few weeks later from A, the new CW. She introduced herself and we set up a time to meet. Less than a week later we got a letter in the mail telling us A was no longer our CW. 

I called them to ask about our meeting, will we need to reschedule with someone else, and was told that letter was a mistake. They were only supposed to send that out to A's old clients. A is still our CW and our meeting is still on. Whew!

The meeting was for last Monday, February 24. I got off work early and as I'm pulling out of the church parking lot A called. She's not feeling well. Could we postpone the meeting an hour, and have it over the phone. Absolutely! No problem at all.

Chuck, Beth and I are sitting at the kitchen table, phone ready when our meeting time came and went. About 20 minutes after, I texted her and asked if everything was okay.

She felt so bad! Said she had taken some medicine and had fallen asleep. Could we reschedule for later that afternoon. Unfortunately Chuck and I had to get back to work so now our new appointment with the new case worker is scheduled for this Thursday, the 6th.

I'm really hoping to get an assistant for Beth. Someone to come by once a week or twice a month, just to help her clean her apartment, teach her good health habits, maybe take her shopping, to the movies. I think it will be good for both of us.

A Difficult Decision

Fourteen years ago I felt the Lord tell me to start a Sunday school class for kids with special needs. I've been leading this class almost every single Sunday since then.

We began with one student and grew from there. Chuck, Diana and Beth all helped for the first few years and as other teachers joined, they were able to step back. We've been in three different classrooms, each new one having more amenities than the last. Each new room was a better fit for the students we had at that time.

Most students were younger grade school age and over time would grow mentally and emotionally where they could attend the typical classrooms.

The years before covid we had 5-6 leaders and up to 10 students at a time. Most of the students had mild autism and participated in the Bible study and crafts, snack, etc.

(This was taken in 2018. The classroom looks so different now.)

Post covid - everything changed. Only one teacher came back after covid, and the students mental and emotional state is different. The students have behaviors that are very complex. They come into the room, pick up the first thing they can get their hands on and throw it across the room, shattering it against the wall.  Or they give an ear-piercing scream and wipe everything off the table because another student took something they had planned to use. Or they crawl under the large round table, lay on their back and using their feet begin pushing on the table causing everything on it to slide to the other side, triggering the other students to scream or yell... 

This ministry is for the parents as well, allowing them to bring their kids to a safe, quiet space so they can spend a couple of hours in the main service worshiping and being filled with the word of God. We try hard not to contact them during service but lately we're doing it more often than we'd like. Last Sunday we put up with a lot of poor behavior from one student but when they tried to bite the other teacher, that's when I called the parents.

I find myself just standing in front of the door all morning (many are runners) and I just observe the students and try to stop behaviors before they happen. How do I 'teach' in that environment? The kids will throw tantrums, and kick and sometimes you're in the way and get kicked. I'm not even sure I understand the behavior, where it stems from, what triggers it, let alone how to deal with it. I've heard that students all over the U.S. (and maybe around the world) are struggling with the aftermath of covid and I get it. I just don't know how to address it.

I'll be honest, I've been trying to lead this class under my own power for many years. I haven't prayed like I should: for the other leaders, the students, their families. I haven't been regularly seeking the Lord for guidance... and I'm weary. I'm burned out and exhausted. I find myself dreading Sunday mornings. Not surprising.

So I've made the decision to close the class for a time of restructuring. I've got to spend some time in fasting and prayer, seeking the Lord for HIS vision for this ministry. He's already shown me three areas to focus on: recruit volunteers, provide training, and change the room a little to accommodate the students we have now. I've added things over the years but I still have a lot of things for four- to nine-year-olds. Now the average age is nine - fifteen. 

Please pray with me that I follow the Lord's leading this time; that people who have a heart for kids with special needs will volunteer; for me to find specialists to come in and train us to lead post-covid students; and for the next fourteen-plus years to be even better than the first!

Me, Beth and Kathy - she was the first non-family member to join me in this ministry.

Champions, Family, Moving

We had breakfast with Sharaya and Ally this morning, then headed to the movie theater to see Champions. Have you seen it? Some of the language was a little crude but overall it was a great movie. A man who didn't know anything about people with special needs ends up coaching their Special Olympics basketball team. He learns a lot about what's really important in life. Thankfully I remembered to bring tissue!

 

 I got word on Thursday that I would be moving desks at work. I have been at my desk in the front office for more than 16 years. And within a week I will be in a quiet 'quad' (with three other admin) on the third floor. Honestly I'm extremely nervous. A person can create quite a routine and rhythm in 16 years. But as I've been processing it, I know I'm going to love it. I can choose my hours because I won't have to fill in for lunches for the other staff in the front office; I will be able to leave my desk whenever needed and don't have to make sure one of us is manning the office at all times; no more double doors opening and closing all day; phones won't be ringing off the hook... When I really think about it I get excited about it. There's going to be a lot of adjusting, but I know it's exactly what I need and I'm going to grow to absolutely love the quiet space!

 

 My view since 2007

 

 Adelaide is learning in leaps and bounds lately! She's a little over three months and is starting to 'talk' a lot! She babbles and coos, it's adorable. She's learned to grip things, she and Poppy are starting to make a connection, and today, she found her thumb!

 

 

Sharaya trimmed Ally's hair the other day. It had gotten pretty long so she cut it and then straightened it. I love this picture of her with Moxie.

 

 Well, it's time for bed. I hope you're having a wonderful weekend!

Thank You

I want to thank you all for your comments and encouragement. Blogger has changed some things and I no longer get your messages in my inbox. I've gone on to come forums and everyone is dealing with this same issue. Maybe it's time to update my blog and make a few changes...

I haven't forgotten about you! I appreciate each one of you! 

One of The Hardest Things We've Ever Done

Beth's job coach, Christine, called me yesterday and told me that Little Caesars has laid her off. Beginning immediately, Beth is out of a job. 

We just told Beth about an hour ago and she sat still and quiet while we explained it all to her. Then she threw her arms around me and sobbed. After a few minutes she stood up, said, "Now it your turn!" and she cried on Chuck's shoulder for a while.

The store got a new owner and she no longer wants boxes made ahead of time. Now when you go into Little Caesars to order a pizza, they will fold the box while the pizza is in the oven.

Today Christine and L, the store manager, spent an hour with the new owner telling her what an asset Beth was to the company and how great of a job she does at folding boxes, but she wouldn't change her mind. Beth was done. 

Beth started working at a Little Caesars in a city about 45 minutes from where we live and she'd be on the bus for 2-3 hours each way. It was long and tiring but she loved the work!
 

 

Then they found a store much closer to home and she worked two days a week. Ironically enough, they just bumped her to 3 days a week. Although that was L the manager who did that. He was just as surprised at the new owner's decision as anyone. 

Beth loved feeling like she was a part of something, loved texting everyone at the end of her shift to tell them how many stacks she did, but most of all she loved that paycheck!

 

After almost 5 years with the company, she's now unemployed. We talked about how her and Christine get to sit down and figure out where she gets to work next. We told her that now maybe her and Nick could go out on dates on Friday nights. And that now every Saturday she gets to bowl both games at Special Olympics! She doesn't have to stop after one game because it's time to go to work.

As I type this I can hear her down stairs squealing and laughing at whatever show she's watching. It'll be quite an adjustment but we know she'll get through it. It would mean a lot if you would please keep her in your prayers.

There Are A Few Changes Coming

I've been a little bored with my blog lately. To be honest, there just isn't that much to write about. I started this blog as a way to share our story. To tell what it's like to live with someone who has Down Syndrome.

There are contrasts between Beth and her sisters that I could write about, but they're not that major and they really don't impact our lives that much. Sharaya and Diana learned to drive, Beth didn't. They go out at night with friends, Beth rarely goes out at night and when she does Chuck and I drive her. They know how much laundry soap to use, Beth uses so much you can smell it clear out in the yard. They know how to spit their toothpaste into the sink, Beth spits all over the faucet and the counters and the mirror... (I swear she's like a sprinkler!)

Their lives are just... different. They would be different even if Beth didn't have Down Syndrome. Beth is a loner. She's like me, she likes her alone time. Life keeps her busy with boring, mundane things and when she gets a few minutes to relax, she likes to be alone. She doesn't talk much and is uncomfortable around people.

There's nothing wrong with that but it certainly doesn't make interesting blogging material.

So, I'm going to start blogging about things that are a little more interesting than toothpaste. Something our family has been doing for more than 30 years.

I know many people dread just the thought of it, but we absolutely love it! Stay tuned!

Writing About Other Stuff Because I Can't Write About The Big Stuff

Saturday was Chuck's birthday. He wanted to go to Moonshine BBQ for lunch so we got there right as they opened. They have the best BBQ! Then we came back here and he opened his presents. He is the hardest person to buy for and he always seems to find out ahead of time, what he's getting! But it's still fun. He loves lemon meringue pie so we buy that instead of cake. :)

We had some family photos taken this weekend. They turned out really good and I can't wait to get them back!

I sprained my ankle as we were leaving to go take the pictures. I told Chuck, "Better my foot then my face!" :) It's still sore today but is definitely getting better.

Sharaya is enjoying her new job. Her and Allie hung out here on Saturday afternoon, she and Diana played cards and Allie and I read a bunch of books.

Diana bought a new car this weekend, it's a Kia Optima. It's smaller than her last car and gets better gas mileage!

Beth and Nick want to go on a date for Valentines Day but I don't think we're gonna be able to make everything happen. I hope we can get them together at least.

Nothing too crazy. Just basic, random stuff.

There is one amazing thing happening around here but I'm not allowed to say. Not yet anyway. :)

So this post will be short and sweet!