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A Muddy Adventure and A Bedwetting Update

We bought a new truck. Isn’t it spiffy? 

So it’s not brand new off the car lot and shiny and smelling like that new car smell we all love.  The door handle may be broken and the steering wheel may be upside down but Mr. Sexy says it runs great.  It was in our price range (of very very cheap) and Mr. Sexy is good at fixing cars. And apparently, he’s not a minivan type of guy.  I guess he prefers a jeep or truck.  Go figure.

Today was our first day of our new schedule of me sleeping in a bit and only leaving the house to pick Michael up from his half-day kindergarten.  I was REALLY excited for tomorrow when Mr. Sexy would be taking Michael to school and Michael would get to experience the joys of a stick shift for himself.

Well, as I was in the middle of making dinner, Mr. Sexy calls to tell me he got stuck.  On Rudd Road.  It’s a back road that will take you to our house.  What am I saying.  EVERY road is a back road out here off the high way.  But Rudd is different.  I think I went on it once by accident and ended up backing out because it was too scary.  But Mr. Sexy is a boy.  And he likes to do boy things.  So he took his new toy out on the crazy road we will tell everybody NOT to take.  EVER.

And what do you know?  It got stuck in mud.

As Mr. Sexy was telling me this over the phone I saw that Denai had peed all over the kitchen floor (I was letting her butt air out and took it a bit too far).  The french toast was burning on the stove at that point and then I noticed the ground beef juices were all over the fridge because there was a hole in the bag.  This was all happening at the same time.  It was a crazy short period of time.

So after dinner and after our family hike around the property Mr. Sexy and Michael set off to get the truck unstuck.  Mr. Sexy didn’t want to take Michael at first because it was quite a hike and already getting late.  But Michael was begging and begging and we are always trying to encourage him to want to do these kinds of things – like hiking, working on the cars with dad, riding bikes, running the dog crazy, all that boy stuff.  So off they went together.  I was a little nervous.  It was dark and I wanted both of them to have a good time.

Well, I think they did.  They came back exhausted having hiked to the truck and back again.  They also came back having a great bonding experience.  It may appear small tonight.  But as my two favorite boys go off together again and again it will turn into something great.  I’m really excited about their relationship.

So, my husband, in my sweet opinion, did a not very smart thinking by taking Rudd Road home  today.  BUT it’s ok.  I wouldn’t even change it.  My boys had an adventure tonight.  And I’m proud of both of them.

From our family hike after dinner.
He was all about running and climbing and jumping EVERYWHERE.

Bedwetting Update

Mr. Sexy and I are thinking Marie’s bedwetting issues are directly connected to her bowels which was pointed out by her doctor about a month ago.  We had her on some medicine which made her have to poop ALL THE TIME and it got so bad she started having poop accidents at night!  Augh!  So we quit with the meds.  And she was dry.  Every night.  She was dry.  WOOOOO!!!!

Then we weren’t so on top of making sure she pooped every day.  Things got stressful with her getting up at night and now she can’t leave her room at night.  She has been peeing her bed.  
Last night, however, we put her in the bathroom for like an hour and she POOPED.  AND her bed was dry this morning. 
So tonight, we stuck her in the bathroom for like an hour (maybe not that long) and she POOPED!  Soo…fingers crossed????

Airing My Dirty Laundry
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Bed Wetting is Still an Issue

This has been a hard week.  But what’s new right?

Finding Winnie’s dog food and dog treats in Marie’s bed this week crossed the line.  Again.  And I was done.  This just couldn’t continue.

We have been recording her activities at night which has been interesting.  She seems to have a pattern of when she gets up and she seems to be looking for something.  Food, of course.  Or anything edible.  Also she crawls up the stairs (being sneaky even though she is alone) which has a locked door at the top so she can’t raid the kitchen.

Eating a little bit of dog food never hurt anyone.  But binging on it would.  Like when Marie ate her vitamins last year.  Thankfully she didn’t eat the whole bottle but she did eat enough to make her throw up at school.  So Mr. Sexy agreed with me that it would be okay to create a barrier so Marie could no longer leave her room at night.  This way we are able to focus on her bed wetting issue. (We are working on two behavior issues at a time.  One big one and one small one.  We have charts and an awards system and everything.  It’s kind of like a fun game.)

Speaking of bedwetting…she hasn’t wet the bed in weeks.  Easy peasy.  I wanted to discontinue our chart system with the bed wetting and instead focus on the getting-up-at-night issue.  But after some discussion Mr. Sexy and I agreed we need to finish it out with the bedwetting.  She needs the success of not wetting her bed for 30 days at which point she gets her reward: A new bed, new bed sheets, new pillow, the WORKS.

Three nights ago we created a barrier so she can’t wander around downstairs for half an hour at a time.  Two nights ago she wet her bed.  I had to search and sniff around  because it wasn’t that potent.  Last night she wet her bed again.  This time it was more obvious.

It’s a frustrating and curious turn of events.  On one hand I feel like she’s being a brat by deciding to pee since she can’t leave her bedroom.  On the other hand, we took away the control of her leaving her room at night so now she is taking back control of peeing in her bed.  I’m no psychologist.  I’m pretty clueless on the “why” for all these things.

So we are back to square one with the bedwetting.  Maybe tonight will be a dry night…

It’s a Crowd in Here: 5MF

Today’s Word: Crowd

My mind feels crowded.  Mr. Sexy has begun some major behavior modifications for Marie.  I’m part of that process, too.  I’m grateful that I haven’t had too much thought into the making of the plan.  I am just following directions and doing what I’m told.  The best I can at least.

Today is Day One.

And it’s already been taxing.  I have a huge list of behaviors I get to ignore.  Some of the biggest ones are Marie’s constant popping of her wrist and toys and how much she plays with her mouth and face.  I get to put a tally mark on the white board each time I ignore the behavior and each tally mark is one point.  You know what that means right?  Points mean rewards!  Mr. Sexy has a reward system for me and I have no idea what it is.

It’s still hard though.

Marie has a reward system too although she doesn’t know it yet.  Mr. Sexy will have to explain it to her when he comes home tonight.  I don’t understand his chart he made for her. lol  But basically, Marie has two behaviors that she is working to overcome.  The BIG one is bed wetting.  The not-so-big one is licking her lips.

OMG.  I just realized I don’t have to be ignoring her licking lips fettish!  Mr. Sexy will laugh hard when he reads this.

Anyways, she has a goal for how long she goes without doing those behaviors. The licking lips behavior probably sounds weird and silly.  However she is CONSTANTLY doing what I call “weird things” with her mouth which causes very dry lips and dry skin around her lips.  I moisturize and chapstick her which helps.

Oh yeah.  I also get to give Marie stickers throughout the day if she does anything remotely positive and good.  She is working on her school and says, “There is a problem.”  So I say, “Go get a sticker.”  This makes me laugh.  She gets a sticker for having a problem? Haha No.  She gets a sticker because she actually told me there is a problem!  That is a major positive for her.

I have over gone my 5 minutes.  But as you can see, my mind is very crowded.  Mr. Sexy has already given me “permission” to make myself a margarita.  Not that I need his “permission” in the first place.

Happy Friday!  I’m looking forward to my weekend!

Linking up with Lisa-Jo for 5 minutes of unedited writing.  It’s a fun challenge!

Five Minute Friday

My Ruffled Feathers

I need to talk very frankly right now.  If I wind up hurting someone’s feelings I’m sorry.  I share intimate details about my family with whoever wants to hear which leads way for offhanded comments.  A lot of the time I can shrug them off.  Today, however, that just isn’t the case.

I remember the first time I met Marie.  She was 7.  It was my turn to watch the kids upstairs during Care Group (like a Bible study).  She was loud, obnoxious and she had control over the entire room by singing loudly and rocking in her rocking chair.  She didn’t care to quiet down even when I asked her nicely and sweetly.  Oh boy!  I was finally able to entice her and all the other kids with a book.  And then Marie, with her hair in a fro from a long day of school and play, was in my lap and in my face.  It was so, so awkward for me!  She was way too big for my lap but in her mind it was the best spot.  I did finally ask – actually demand – that she sit on the floor so I could see the book. I really love this memory and I hold on to it.  It’s the memory of our first connection.  She felt safe to throw herself into my lap.  It made me feel special, like she liked me.

I didn’t know she had down syndrome at the time.  I only knew there was something different about her.  At this point her dad (Mr. Sexy) made me nervous and I was embarrassed to ask what I thought was a silly and rude question: What’s wrong with her? (Okay, that sounds a little rude.)  I’m pretty sure someone even told me what she had but it was so … weird … to me that the name didn’t stick at all.

“She doesn’t look like she has down syndrome at all!” 
(This is not an exact quote from anybody in particular.)

Mr. Sexy and I get these comments all the time.  I didn’t realize why it ruffles my feathers just slightly until Mr. Sexy said it like this: I feel like it undermines our struggles. 

That may not be true.  It may be illogical.  It may not be fair.  But that is truly how it feels.  I struggle day in and day out with the fact that Marie has down syndrome.  She does things all the time that are not typical of the normal kids.  Her face twitches, she licks her lips so much they are constantly flaky and dry, she doesn’t speak well considering her age, she is generally slow and simple and she will eat herself sick.  I don’t say these things to be mean or diminish who she is in any regard.  I am simply calling it like I see it.  She has down syndrome.  These are some of the attributes that come with it.  And yeah, they are the negative ones.

All this to say: It doesn’t take much effort to realize there is something about Marie that is different from your neighbor kid next door.  It only takes a few minutes of talking to her or watching how she behaves or even by hearing me talk about her to see it.

It’s okay not to understand it.  It’s okay to ask about it – although I understand that would be scary especially if you don’t know the parents!  (I was afraid to talk to her dad about it at first.)

But someone telling us Marie doesn’t look like she has down syndrome ruffles my feathers.  That is basically saying they don’t know our family in the slightest.  And that’s okay too.  We don’t have to be friends with everybody.  But why broadcast that ignorance?

“My kid does that all the time!” 
(This is not an exact quote from anybody in particular.)

Again, I hear this A LOT.  And I get it.  People want to relate.  I’ve done this too!  We want to have something to say.  We want to try to encourage or make light of a situation.

But again, hearing this statement rubs me wrong and usually I can brush it off.  But today I’m having a difficult time doing so.

I think Mr. Sexy still says it best: I feel like it undermines our struggles.

This may be wrong, irrational, unfair and you may not understand it.  But I have to be brutally honest today.  I HAVE TO BE.

I classify many of Marie’s behaviors as weird.  Marie does weird things.

When your kid is three and learning about play dough she has to eat it.  It’s a right of passage.  She may nibble on it for years to come.  But there comes a point when she realizes it’s too salty and it’s not meant to be eaten.  So she stops.  Well, Marie doesn’t stop.  So while your kid can make the connection that it’s time to grow up a little, my kid can’t make that connection so she turns into a teenager doing things your kid has forgotten they ever did!

Marie wets her bed.  She is 12.
Marie at a bandaid today.  She is 12.
Marie at a tube of Chapstick, Neosporin and diaper cream on Sunday.  She is 12.
The day before that she shared a carton of ice cream with our dog.  She is 12.

I have a huge list of weird things Marie has done or eaten.  I don’t think my list would bore you either.  But for the sake of time, let’s move on.

Every time she does something weird it hurts.

I want better for her but have no idea how to make that happen.

My hurt quickly spirals into anger.

That anger results in broken relationship.

So as I continue to share the deep struggles I have with my daughter I will be working to grow a tougher skin.  It’s just that today is not that day.  Today I’m weak from the exhaustion of the fight against down syndrome.  I do fight it.  I want to erase it.  Ignore it.  Squeeze it out of her.

But I can’t.  I know this truth in my head.

Emotionally, however, I’m still choosing to fight a fight I won’t ever win.

How lame is that?!

Disclaimer: I know that nobody has intended to ever hurt me or my family with comments.

Binge Eating and Down Syndrome

A few nights ago I found an empty carton of Dreyer’s Chocolate Chip Cookie Dough ice cream hidden under Marie’s bed.  I only knew to look for something when I discovered chocolate in her sheets.  The carton was basically full; I was the only one who had eaten out of it and I eat only a few bites at a time right out of the carton.

Marie sneaking food into her room, into her bed, into her stomach is not new.  Yet I still become terribly angry.  Her past binges, such as when she ate Mr. Sexy’s birthday cake, come back.  I work very hard to forgive and realize where Marie is at with these issues.  So far I feel completely helpless and struggle with letting go of the past because it feels like she will battle binge eating for the rest of her life.

In fact, last night, I caught her AGAIN.  That’s twice in two days.  Michael invited her upstairs to read with us.  Instead, she left her room, saw a spoon that had old, crusty cheese on it, ate the cheese then went back to her room.  I noticed.  This situation feels hopeless.

We have scheduled a doctor’s appointment so we can discuss this food issue and her bed wetting issue.  We have exhausted all options in trying to help Marie overcome these obstacles.

Her binge eating and bed wetting go back years and years.  Interestingly, however, Marie stopped binge eating and bed wetting when Mr. Sexy moved them away from V (her biological mother).  They lived this way for about nine months.  No urine soaked bed sheets.  No empty refrigerator by morning time (Marie typically binges in the middle of the night).  Then V re-entered their lives.  Binge eating and bed wetting became huge issues once again and have yet to stop all these years later.

I do believe that these two issues are mostly, if not completely, emotionally related.

That doesn’t make it any easier.

Mr. Sexy and I have had a few theories on why Marie continues to struggle.  One huge idea is down syndrome.  Marie seems to have no impulse control.  She sees something she likes so she picks it up and takes it.  Sometimes it’s my bracelet I left on the coffee table or one of Evan’s toys or a leftover egg sandwich she finds in the kitchen.  Most of us figure out these behaviors are unacceptable at a very young age.

While I believe Marie understands these behaviors are unacceptable, even while she is doing them, there is something that pushes her to do it anyways.  Almost like she can’t think clearly.  A connection issue.  The wires in her brain aren’t communicating properly.

Marie is very thin which is not the norm for a person who has down syndrome.  I’m not entirely sure why this is.  When I have asked other parents who have a child with ds they are surprised when they hear my stories about Marie’s getting up at night to eat a loaf of bread or an entire jar of peanut butter.  I used to think this was something lots of other parents experienced.  Apparently it’s not that typical in the ds community.

So that got Mr. Sexy and I thinking.  Marie is thin because we control everything she eats because she has very little impulse control.

 Her first summer visiting her grandparents out of state I freaked out when her Pokni (grandma) was surprised that Marie ate like 3 corn dogs and wanted another.

Marie will almost always say yes to more food no matter what it is.  Most of her conversations, with friends or with herself, revolve around what she has eaten and what is to be eaten next.  Hmmm is this a ds thing or an emotional thing relating to V?

In my experience people who have down syndrome are significantly overweight.  Even the kids.  I don’t have any friends who have a child with down syndrome so I cannot speak to their eating habits and exercise habits.  I only assume a lot of kids who have down syndrome eat a lot and maybe what they eat aren’t the most healthy choices.  Again, I am guessing and assuming here.  I’m very curious on this issue.

If a kid who has ds cannot decipher between hunger and feeling full, who makes that decision?  The parents, right?  Marie honestly cannot accurately tell us how hungry she is or isn’t.  It’s a complete guessing game and if we are unsure we add a little more food to her plate – just in case.

So what if she is obsessed with food because we constantly suppress these desires?  What if we gave snacks throughout her day, candy as a reward for a job well done, soda with lunch, ice cream every night, 3 hot dogs if she wants.

I can tell you one thing.  We would have one unhealthy kid on our hands.

We are not interested in teaching Marie unhealthy eating choices.  We are not interested in allowing her to binge eat in the middle of the night and then pretend it didn’t happen.

Two barf spots in the clean-up process.

The empty carton of ice cream is still sitting on her dresser as a reminder.  This isn’t to be mean or anything like that.  We are aiming to prove a point that she won’t forget.  So far the point is being made.  She doesn’t like to remember when she has made a mistake.  It makes her sad.  Allowing Marie to throw away the container immediately would be like allowing her to forget it ever happened and move on – only to do it again.  In fact, we later realized that our dog shared the ice cream with her and ate so much that she threw up the next day.  Guess who got to clean up that mess?

It feels like everybody has opinions about these struggles.  I am very interested in the opinions and ideas of parents who have experience with down syndrome and impulse control like what I have described here.

Thanks for reading!

Urinealysis

No matter how much I try to prepare for the smell of urine, it doesn’t seem to be enough. I still feel angry, disappointed, discouraged and frustrated.

I was able to avoid the basement for most of this morning. Then I needed some logs for the fireplace.

As I left the couch headed for the stairs I still felt the smallest sparkle of ‘what if?’. There is always the hope that the basement will not be engulfed with the pungent odor of Marie’s urine. 

That hope disappeared.

I shut her bedroom door quietly.  I shut out the smell, the anger, disappointments, discouragements and frustrations. 

My daughter is 12 and wets her bed almost like clockwork. I say almost because over the last few months she has had short periods of staying dry.  The first time I realized this I almost cried.

 

I was incredibly proud.  I only realized she was dry because she walked by and I smelled… nothing. That’s weird because when she pees the stench is in her sheets, her skin and her hair. After peeing she curls up in her blankets to continue sleeping and doesn’t seem to be bothered. Anyways I smelled her sheets and they smelled like…nothing. This means not only was she dry that night but she had been dry for a while. I had still been making her clean her sheets every morning because I had lost all hope that she would ever be dry. I quit paying attention because it hurt too much.  That may sound selfish but it’s the truth.

I made this a HUGE deal. We called the grandparents, we took pictures and we watched TV in our pj’s because that is what you do when you don’t have to wash your sheets and shower immediately.

She wasn’t peeing herself anymore so she was allowed to wear whichever night gown she wanted (the One Direction nightgown is her “pee nightgown” so only one will get ruined by the urine and frequent washings). Then about a week later, as we were getting used to our new morning routine which was slow, simple and easy, Marie put on her pee nightgown for bed.  She broke the seal.

Since then it’s been hit and miss. For a while it seemed that she peed when wearing her pee nightgown but not when she wore her pretty princess nightgown.  That theory got shot down. Then it seemed like she wouldn’t pee when she went to bed wearing clothes.  That theory proved incorrect as well.  Now Mr. Sexy wants to start all over with her which means waking her up every two hours to pee on the toilet.  When she remains dry for a week she will get up every three hours, then four, and eventually she will be dry all night.

My opinion is that for some reason Marie makes the choice to wet her bed.  She may make the choice based upon what she wears or how she is feeling.  She may make that choice as she goes to bed or maybe she wakes up and decides to pee in bed.  Heck, Michael made that choice just the other morning.  I can understand that it seems easier to a kid to stay in bed and pee than to leave the warm blankets for a cold toilet. But every night making that choice? 

Mr. Sexy has a theory that I scoff at but he truly believes it. Honestly, he’s pretty smart and excellent at reading people. He knows Marie and I better than anybody in this world. And that’s his theory: Her struggles with bed wetting are completely emotional which in large part revolve around her relationship with me. He tells me all the time that Marie and I have desires to connect but neither of us have a clue on how to do it. We constantly miss the mark.

The reason I scoff at Mr. Sexy’s theory is because he is pretty convinced she started staying dry after one night of drunken connection.  Wow that sounds really bad.  Let me explain.

Mr. Sexy was working that night at his second job which left me home with the girls. We had a busy day and Marie didn’t have a chance to work on her homework. So I decided to keep her up and make her get it all finished. The plan was for me to grab a beer and watch TV while Marie worked upstairs.  Instead my beer and I parked at the table with Marie. It was incredible entertainment as I watched her figure out sentences to go with her spelling words.  The beer helped me to relax and ignore the imperfections I seemed to always find in her. Instead I saw a sweet girl working really hard on her homework.

I connected. We connected.

A few hours later she was done with homework and ready for bed.  That is when I laid everything out for her.  I put my heart on my sleeve for her and let her know just what I was feeling. I won’t go into the details just know tears, hugs and smiles were involved.

It was about a week or so after that when I noticed Marie was dry.

Perhaps Mr. Sexy is onto something with his theory. I want to agree with him because it almost makes sense. Marie desires my approval so much and I desire emotional connection with her. Yet it’s still so hard.

I’m incredibly frustrated about the bed wetting.  It’s hard for me to ignore it in the mornings because I’m incredibly disappointed. She is better. She is so capable. I tell her that every morning.  But I also tell her that I am mad that she pees. I know that’s wrong and not a loving way to handle the situation. That’s why I shut her bedroom door in the mornings.  It gives me time to process my emotions so they aren’t so hot for her.