A Love Without Limits - Paul and Kris Scharoun-DeForge

Have you heard of these guys? I read about them in the Readers Digest this month.

They are celebrating their 25th Valentines Day as husband and wife but they won't be together this year because Paul has dementia. He was moved into assisted living and it broke Kris' heart.

"He opened up my world," Kris said. "I looked into his eyes and I saw my future."

There is a picture of them sitting on the couch, her head is resting on his shoulder and her hands are wrapped around his arm.

They both have Down Syndrome.

It goes on to talk about how he proposed, how they worked together to organize their wedding and how they have served each other for the last 25 years.

I couldn't help but think of Beth and Nick. Of how different their relationship is from Paul and Kris.

The first few years that Beth and Nick dated, he talked non-stop (seriously!) about getting married. How they would get married and move to L.A. and he would become a firefighter and they'd live in a $500,000 home... none of it was realistic and he didn't want to talk about what a real marriage could be like. Even the good things! I understand having goals and reaching for the stars and all that, but no matter how much you tried to talk about this realistically or ask him honest questions about it, he would argue with you and insist this would happen. His mom finally put her foot down and told him no more talk of marriage. Not for a while anyway. We know neither one of them is ready for marriage (mentally or emotionally) let alone moving to another state by themselves.

Nick is very controlling and Beth is very meek. She often gets angry at him because he texts her almost constantly but she never says anything to him about it.

Beth won't look at Nick. Her head is usually down and she'll kind of grunt but they don't have conversations. Not face to face anyway. When they're with each other, she barely looks at him.

In fact, I've had her practicing saying Hi to herself in the mirror. To look at her face, or her chin or nose if looking at her eyes is too hard and say "Hi!" Just to get comfortable with looking at a face when she talks. 

It's things like this that show us they're just not ready. And that breaks my heart for both of them.

Their first date - on her birthday 2014

  
Last month he was banned for a week from All Aboard because they can't keep their hands off each other. Beth was put on a separate bowling lane for the same reason. Last week we stumbled upon... a situation... that has us concerned. Right now it's harmless (because neither one of them drive and they live 45 minutes from each other) but it could lead to some more serious issues.

There's just so many things going on right now with the two of them and I don't know if it's going to to escalate or eventually die down and become nothing.

I'm so torn because they are both adults. I feel for them, I understand what they're going through. But, even though they're adults they don't understand the full impact of some of the choices they're making.   

Social Secretary

Beth and Nick met when she was 30 and he was 28. We never thought she'd have a boyfriend, she'd been single and happy for so many years we figured it would be that way forever!

Both Sharaya and Diana dated and had guy friends but Beth never did. When Beth was in her early 20s she would occasionally say she wished she had a boyfriend but even stopped saying that after a couple of years.

It was hard for her when Sharaya became engaged and got married. Then when Sharaya got pregnant, she remembers Beth not talking to her for months. Was she jealous? Angry? Maybe both. But eventually she was thrilled to become Aunt Beth and loves to play with Allie. She became content with her life and it's routines and schedules.

Then Nick appeared on the scene. He has changed everything! I've become Beth's Social Secretary, so to speak.

She'll come to me and say, "I want Nick come over on Tuesday." I'll check my calendar and we'll find a Tuesday that works for us then I'll write down the details.

"What do you want to do when he comes over?"

"I want him ride my bus with me." 

"Oh, so you just want him to ride the bus with you after bowling so you can spend some time together?"

"Yeah."

So then I text his mom and let her know of our plans and give her the dates and times to see if that works with their schedule.

Once all the plans have been made, I'll go down and tell Beth the details.

"After bowling on Tuesday, Nick will come here and you two can have lunch together." I'll make sure she has enough food for the both of them and that it's something they both like.

Of course, I'll come home early that day to make sure they're not home alone for too long. And I will tell her what time I will be here too. And I will go downstairs as soon as I get home to let them know I am home and that they are no longer alone.

(Beth recently wrote a prayer request at church that could be considered *ahem* R-Rated.) Oh Lord, help!!

"They Remind Me of Me"

Our Sunday school class was really full this passed weekend, we had 6 students and 4 teachers! We had one 5 year old and the rest were 12, 15, 20, 21 and 30.

We had a teachers meeting last night and one of the things we talked about was possibly needing to split the class into two, younger and older. There are 2 other preschool / Kindergarten aged kids plus a 5th grade boy (I'm SO thankful they all didn't show up on Sunday!) so separating the students would give us two relatively good sized groups.

One of the teachers asked what Beth thought about having such a diverse group each week. I'd never thought to ask her so this morning I did. She was eating her bowl of Cheerios and I asked her if she liked having the different age groups in our class. She said no, that she only liked having the little kids. When I asked her why she didn't want the older kids in our class, her response surprised me. She didn't hesitate in her answer, "They remind me of me."

I'll admit I was a little stunned. All sorts of thoughts ran through my mind and then Chuck asked from the living room, "Beth do you like the little kids better because you feel more like a teacher with them?"

"Yea."

"And with the older kids, you feel like you're just a part of the class?"

"Yea."

At that point her bus arrives so I wasn't able to ask her any more, but I've been thinking about this all day. They remind me of me. I wonder if it's like watching yourself in a mirror as you go about your day, seeing everything you struggle with played out right before your eyes? Like when you watch yourself in a video and see all your inadequacies?

Do any of the other kids feel like this? What can we do to change it?? I've got to find a way to help them see themselves the way God sees them, amazing, caring, beautiful people with gifts and talents that He wants to use to bless others.

One Day

One day we woke up, put on a wedding gown and tuxedo and said vows to the person we love.

 

This day, 31 years later, we put on jeans and t shirts and took our van to the shop. We walked around the mall and went out to lunch. Eight hours and $500 later, we drove home.

Not as exciting as that first day, but special none the less. :)

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!

It Has to End Today

Beth missed her bus again today.

Her alarm went off, she got out of bed, turned it off and went back to sleep. I went down to her room at 9:15 and she was still asleep. I took off her covers and turned on the light. Told her she had to get up or she'd miss her bus. Went down again at 9:30... still asleep. This time I shook her and reminded her just how much she loves karaoke and art and how she'd miss seeing all her friends. She had to get up now!

At 9:45 her bus was due to arrive and she was still asleep. So, I called DART and told them not to come. I went back down and turned off her light. She sat straight up, threw the covers off and started getting dressed. I told her it was too late, she had missed her bus so she could just go back to sleep.

Five minutes later she was upstairs, completely ready to go. I told her again that it was too late. Sorry Beth, but there's nothing I could do!

This is my life. Day after day. Week after week, I go downstairs and try to get Beth out of bed. For work, for church. And to be honest I'm tired of doing it.

So this afternoon we had a talk. I explained that she is an adult now. She kind of has her own apartment. She goes to work. She gets a paycheck and has her own debt card. She does a lot of things that adults do. But she still won't get out of bed in the morning. I told her that she has an alarm clock, just like other adults. MY mom doesn't come wake me up in the morning. I don't go to Sharaya's house and wake her up. Because we are adults. Now our alarms wake us up.

I told her that today was the last day I was going to wake her up. Starting tomorrow, if she doesn't wake up when her alarm tells her to wake up, then she will miss her bus. And if she misses her bus, she doesn't go to work. And she doesn't get paid. And she doesn't get to go shopping.

She's an adult now and this is the way it is for adults.