Starting On a Healthier Road

I took Beth to a nutritionist on Monday. We checked in and she filled out the paperwork, then we waited to be called.

Claire (she looked like she was around 30) came out to get us and took us into a private room. She talked with Beth about why it's important to eat healthy, and asked her why she wants to lose weight. She spoke directly with Beth the whole time and Beth answered every question. 

When Beth went dairy free I typed up a list of things that she could eat. It's on her bulletin board and she's starting to make better choices when she shops. 

One thing Claire gave her was a list of what each food offered: protein, carbs, good fats, and how eating them together is better. Plus portion control, what to do if she's still hungry after she eats... things that sound better coming from someone other than your mom. 

We were in there for over an hour and Beth seemed to be pretty excited about it. On our way home we stopped at the grocery store for just a few things and one thing I grabbed was an apple. Beth asked me about the pears and when I pointed to them she said, "No, not that."

"Those are pears Beth. What were you thinking about?"

"They're like apples."

I pointed across the aisle and asked if she wanted a peach or nectarine? 

"Yes. A nectarine."

She had to use two hands to put the twist tie on, but she was excited about buying a nectarine! 

Tonight we did our weekly shopping. It was kind of weird, do you have a regular routine when you go grocery shopping? The Safeway we go to has two entrances and I had to put a letter into the blue mailbox that's on the other side of the parking lot, so we went in the other door, and started our shopping at the other end of the store. We started on the deli side instead of the produce, went down the aisles from the other direction, we saw the store from a whole new perspective! It was like we'd never been there before!

We loaded everything in the back of the car and after we got in she tells me, "I did not buy my licorice." (She usually buys two pounds every week.) "What?! Beth that's fantastic! That was a great choice!" And I gave her a high-five.

Here we are on the road to a healthier lifestyle!

Shopping Like A Kid vs An Adult

You ever have one of those nights where you wake up very early and you just lay in bed thinking about life? Happens to me fairly often but I had an interesting one a couple months ago. It was a Thursday morning. Grocery Shopping Day.

I was thinking about Beth and the choices she makes while shopping. I thought about how it all seemed to start when we bought her a refrigerator, and some kitchen cabinets and a microwave. And we gave her the authority to start buying her own food.

And I thought about all the times, the years I've spent trying to advise her on what foods to buy, what foods are healthy and which foods are not. All the times I've coached her, encouraged her, got angry at her, educated her. And how tired I was of doing it. And how tired she was of hearing it.

There comes a time in your adult child's life where you have to take your hands off and allow them to make choices. Whether they're good choices or bad choices. Even choices that are different from what you would make in that situation. At some point you have to step back, and let your adult kids be adults. As hard as it might be. 

And as I laid in bed early that morning, I believe the Lord dropped an idea into my mind. An idea that might help Beth make better choices.

When we're kids we want the cookies and cake and ice cream and sugar. And we beg mom and dad to buy it for us. But as adults we realize those aren't healthy and we need to limit how much we eat of that stuff. 

I realized I've been trying to force Beth to shop like an adult. 

And we can't force anyone to do anything. Oh we can advise and encourage and educate, but we can't force. Not in a healthy relationship anyway. And shopping was becoming stressful for both of us.

So I apologized to her. Said I was sorry for trying to force her to buy certain foods. And I told her she's the only one who can choose what she's going to buy.

And a few times since then, as we're walking into the store, I remind both of us that it's that time again where we need to decide if we're going to shop like a kid or an adult.

And you know what? She's slowly making changes. And our grocery shopping is becoming much more fun!

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.   

Child-Like Or Childish? And Where Do You Draw The Line?

I've read some blogs and Facebook posts from parents who are angry that someone said their son or daughter with special needs was like a child. Some of the phrases I've read - and heard, "They will always be like a child" "Perpetual children" and "So child-like."

But I wonder if some parents think it means their child is childish. 

When I hear phrases like that said about Beth, I try to remember the heart of the person saying it and 99% of the time, they're not being mean or facetious. They just notice a child-like innocence about Beth that honestly, most adults no longer have.

Beth isn't cynical
She doesn't look for the bad in every situation
She looks at the heart of a person
Doesn't care what clothes you wear
Won't judge you by your shoes
She forgives easily (when she understands the situation)

But you know what, Beth also has a lot of childish qualities. 

She still eats garlic bread by taking a huge bite right out of the middle. When I suggested she cut the second piece, she did but she wasn't thrilled about her mom telling her how to eat.

She eats too many sweets. Her idea of a snack is a half a bag of marshmallows. And when I suggest to her that those are not healthy and she shouldn't eat them, she gets mad at me. 

Then I have to remember, "How did I feel when I was in my 30's and my mom would tell me how to live my life?" Course, now I realize my mom was right, but at that time, those poor decisions were mine to make and I was gonna make them if I wanted to!

That's one of the privileges of finally becoming an adult. We get to make our own decisions! Good or bad. No more mom and dad telling me what to do, I get to choose for myself!

So where do I draw the line with Beth? When do I let her make those poor decisions like a real adult and when do I step in and tell her how to live her life?
 
That is the age old question for every parent of a child with special needs.

I remember when she was a teenager and still wanting to watch kids shows, like Dora the Explorer. I would occasionally let her, thinking she knew all the answers and maybe it made her feel smart. I don't know. But I also remember finally saying no. I would turn on something a little older like iCarly. And I noticed those were the shows she really liked and she never went back to the younger ones. 

I will always step in when I see Beth being childish, but I believe she will always be child-like. And I'm okay with that. 

Having Down Syndrome Doesn't Matter

When Beth was born we were told all kinds of things, some were true but others turned out to be false. One thing was that if you allow her to do it in your home (excessive hugging or whatever) she'll think it's okay to do it in public. Which, turns out is true for any child not just someone with Down Syndrome.

We were told she'd never have long hair. That one was not true.

Something else they told us at the hospital was that Beth was going to be more like the people in our family, rather than other people who have Down Syndrome. 

She'll have our traits and characteristics and habits and be more like us; Down Syndrome will tell us the shape of her eyes, but not decide her personality. That little extra chromosome will dictate the size of her hands but it won't tell us if she'll grow up to be a motivational speaker. Our family unit will dictate her behavior and choices and actions, and for some reason that surprised me. I don't know why, I guess as a 23 year old, brand new mom hearing that diagnosis for the first time I just figured that people with Down Syndrome were all the same. But they're as different from one another as the rest of us!

Beth has developed some good traits and some not so good. Made good choices and bad choices. Which again, can be said of any one of us! When it comes to developing habits, an extra chromosome doesn't make that much of a difference.

What Would You Have Done?

I try to treat Beth the same way I treat my other daughters. But let's face it, Beth isn't like my other daughters. Here's what happened:

We came home from church last night and I made hot tea for everyone. I took Beth's downstairs and saw a large cookie that she had bought at the coffee stand. I checked the nutrition label and it was packed with calories and sugar. I told her that she shouldn't eat it, that it was very unhealthy but that she was an adult. She was smart enough to make her own choice about it and that I wasn't going to tell her what to do. I put the cookie down and went back upstairs.

Our middle daughter is married with a daughter of her own. I certainly don't tell her what she can and can't eat. Our youngest will be 22 next month and I don't tell her what she can and can't eat. But Beth isn't like my other daughters.

Beth has Down Syndrome and it can impair her judgement. It can cause confusion about right and wrong. The 'I want it' urge is sometimes much stronger than the 'what is healthier for me'. The 'I'm an adult and can do what I want' sometimes beats out the, 'I need to make better choices for my life'.

But my other daughters make poor decisions. As much as I want to tell them, "DON'T DO IT!!" I have to allow them to learn from their choices, good or bad. As all moms know, we sometimes bite our tongues, we look the other way. We have to, in order for our kids to grow up to be independent and contributing members of society.

But Beth isn't like my other daughters. That little extra sometimes keeps her from seeing the consequences of her actions. So do I keep 'teaching, instructing, deciding for Beth? Is that what I signed up for when we brought her home from the hospital? Do we, for the rest of her life, tell her what to eat, what not to eat, what to wear, what not to wear, what to do, what not to do?

But Beth is 28. When do I let her make poor choices? What do I do when she doesn't understand the consequences of those choices?

You'd think that after all these years I'd have it all figured out. But I don't.

After the cookie situation last night, I crawled into bed and wondered if I had done the right thing. Should I have just taken it away? Should I have just said, "No you're not eating this?" She's 28! If my other daughters eat things that aren't healthy, I don't say anything. If they do something that might risk their health, I don't say anything.

But Beth isn't like my other daughters.

Renewing

I went downstairs last night to remind Beth it was daylight savings. We changed her clocks and I told her what time to set her alarm. She had to wake up early this morning because she was greeting at church!

When we got there, she put her bag and coat on her seat (Youth section, second row, far right. Been sitting there for many years.) Then she came out to the foyer and just stood by the window. I hesitated to go over to her cause I knew she didn't really wanna see me. But she was just standing there alone. I pointed over to the greeters who were gathering by the information booth and told her that she'd be praying with them in a few minutes.

I saw Bonnie, one of the head greeters tell another greeter, "I better go over and talk to her. She probably doesn't know where to go." Bonnie looked at me and we both smiled. She headed over to Beth and that's when I walked away.

A few minutes later I walked through the foyer and saw Beth praying with everyone. It was good to see her taking part in an adult activity.

Last night I explained that her routine would be a little different today but that it would be okay. Instead of going to the coffee shop before service, she would have to go before Sunday school. And she was okay with that!

After Sunday school we went to the grocery store and she bought herself some canned fruit and some pringles. I was able to talk her into buying a package of 6 small, they're not cans, more like plastic containers of Pringles instead of the tall can. She tends to eat the whole thing at once. This way she can take one individual container when she goes somewhere. Pringles aren't the healthest food for her, but that's why she also bought the fruit. Also, instead of her usual soda, she bought an individual orange juice to take to art and karoake! (On Wednesdays, she has an art class and karaoke class. She's gone for about 9 hours.)


She just called. "Dad? It's me, Beth." :) "I'm ready for you to pick me up." Choir rehearsal is over and she's ready to come home.

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She needs to renew her Food Handlers Card in order to help with Thanksgiving. There's a class tomorrow night at church, but I hear you can now take the class on-line. Not sure what we're gonna do yet. If she doesn't do it on-line tonight, we'll probably go to the class tomorrow. She had a card once and took the test with her job coach. I think it was when she was working at Auntie Annes Pretzels. I'm not sure how her job coach did it, if she talked her through the test, double checking her answers, 'Are you sure you wanna mark B? Let's think about it first.' Am I gonna be be able to coach her like that? Can I give her hints? I'm kind of nervous about doing it in a classroom setting. I like the idea of doing it on-line.

A friend told me you watch a short video, then answer 5 questions. Then another video and 5 more questions. I like the idea of short segments. It'll make it easier for her to remember what she's just watched.

So, I don't know. I'll let you know what happens!