I Home School

I'm homeschooling.

There are handfuls of people who probably think I shouldn't be homeschooling. I don't know this for a fact as no one has said this directly to me. But I have heard some things.  I also sense the ideas in questions I receive when I talk about Marie.

Those concerns, questions and opinions are battles for me.

Simply going to church is a battle.  Everywhere my family goes there are concerns, questions and opinions.  When these things are brought to my attention, my defenses shoot up high and fast.  This makes me difficult to talk to. I have answers for most questions and concerns that come my way because it all gets repeated.  New town, same story. And that's okay because God is alive in our home.

I don't think I have made it clear how much homeschooling has lessened stress for me at home.

When Marie was in public school, the bus picked her up and dropped her off.  I woke up early to get her showered, dressed and fed. Mornings were the worst for us. I tried many ways to encourage her to pick up the pace and get things done so she would be on time. Lists, pictures, nagging, doing it all for her.  S-T-R-E-S-S

But then I had the entire day to myself. Wooo!!!! Yet by the time 3:30 would roll around I could feel the stress of what was to come creep up on me. What was it going to be today?  Did she eat her lunch on the bus? Did she sneak some nail polish on the bus and eat that instead? Did she pull her hair out of her nice up-do again? What about her "friends?" Did she kick anybody today? Was she disruptive in the classroom again? Are the buttons ripped off her new shirt? There was just about always something that would be wrong. Some of it was minor, as you can see.  But other times it wasn't so small.

After she got home there was a rush of things for me to deal with. Her appearance (torn clothing ect.), the report of her day, finding things in her backpack that aren't supposed to be there, looking at the homework hoping she would understand it.

Between getting home from school and bedtime there was a very small window to deal with what happened in her day, to get her homework done and to eat dinner and go to bed on time.  Forget playing.

S-T-R-E-S-S

Now we home school. It's not perfect.  It's not stress free, by any means. But it's working for us.

We get up leisurely now. Our schooling doesn't have a definitive start and end point.  For instance, this morning she is going to be starting an hour and a half late because I have had a rough morning. There are some days where we don't get to school at all. Don't worry, that doesn't happen often.

Homeschooling is helping to improve my relationship with Marie.  That seems backwards, even to me. While we have our really bad days, we also have good days.  This morning, with Denai sitting on my lap, I asked Marie to refill my coffee cup. That's progress. It's progress for her brain and it's progress in our relationship. When I ask her to do something that is for me, (it's almost a selfish thing) it's a small way that I show I'm willing to accept her and what she has to offer in my life.

While the stress from her public school days are gone, there is still stress being home all day together. She finds things to eat when she feels she won't be caught. (She will actually get up and look through stuff to find something.) If I leave the room, she likes to behave inappropriately - which is really irritating. She struggles with the most basic schooling concepts and I just want her to GET IT. She takes a really long time to learn.

Ultimately, that is why I home school. She takes a really long time to learn.

In math I have spent an entire math working with her on 1 + 0 = 1. I have learned that she learns well visually.  So we use blocks on the carpet to visually see that a number plus nothing equals that same number in the number sentence.  It's hard for her to understand which is frustrating to me because I don't see how it's a difficult concept.  However, she's starting to get it.  Slowly.

So, I home school. It's the right decision for us right now.

What Changed?

Many families can go camping - or go on a number of other activities and vacations - and have a lovely time.  Typically, I would say there is always an amount of stress involved in getting everyone and everything ready to go - especially with small children who "help" or older children who can't be bothered to be removed from personal comfort.  Yet, overall, families move on and have wonderful experiences together.  Some would even call it relaxing and peaceful.  That's why we, the Sexy family, enjoy camping so much.

Yet it's not all that peaceful and relaxing.  At least, not for me.  And if I'm feeling grumpy, for example, it plays into each family member and even effects the friends we are visiting with.

For me, family activities are tense and stressful with very little release.

Saturday night was our second night camping with our friends and I was almost begging Mr. Sexy to put the two girls to bed early so I could finally relax.  Denai was exhausted anyways but putting her to bed before the sun leaves typically proves difficult.  Marie, on the other hand, was a gem.  No signs of grumpiness there.  However, she tends to be my main source of tension these days.  So bedtime is something I always look forward to.

Mr. Sexy has been telling me often I need to relax.  WE need to relax.  But it ain't all that simple.

Something has changed between me and Marie and I have been spending a lot of time deep in thought about what it is.  A few months ago I was getting into the habit of being purposeful in my loving actions towards her, regardless of what feelings were feeling like.  The heart changes began immediately and true connection starting peeking its head out.  I saw glimpses of a genuine relationship with huge potential.  In each other we were finding small pieces of comfort and humor.

That's all gone now.  I feel as if I have gone backwards a year or so.  There are huge feelings happening to me and I am getting lost in it.

After visiting a class on spiritual warfare this weekend (read about the author, Dr. Karl Payne), after seeing the pain in Mr. Sexy's eyes every day, I have realized what it is that has changed.

I gave up.

I accepted.

I welcomed.

I have become completely complacent in my relationship with Marie.  There are two feelings at play now.  Numbness (if that's even a feeling) and anger.  I feel numb to her when she isn't around (you know, the sleeping part).  I feel angry when I see her.

I know how this sounds.  I even know what you are thinking.   I know because everything, EVERYTHING has been said to me when I begin to discuss the deep, dirty issues that life offers.  In order to put anyone's uneasy mind at rest, Mr. Sexy and I are seeking help in all avenues.  He is in counseling, we are meeting with a behavioral specialist (appointment is today YAY!), we are also seeking help spiritually and I am slowly making my way back to counseling.

I have a line from a song in my head.  I'm not exactly sure what it means, especially out of context:

Slow down, let my heart catch up to your heart.

(You can preview this song, Bethany, for yourself.)

It's playing over and over and over again.

Perhaps I need to slow down and fill my mind with the Holy Spirit.  Only through His strength will I be able to fight of those who torment my mind with all these huge feelings.

I have been thinking and talking a lot about feelings lately.  It was only a handful of years ago that I learned and realized that feelings are just that.  Feelings.  When they are good, it's awesome.  But they aren't always good.  Sometimes it's bad, like anger.  Good or bad, feelings are not to be trusted.  In my experience, feelings should not be trusted.  Period.  Unless weighed in with something else.

Fighting the feelings is exhausting work.  But hey, giving in to the feelings leaves me just as tired!  Either way, it's a battle.  So if it's going to be hard work either way, shouldn't I choose to challenge the big feelings and fight off the untruthfuls?  As I am typing this, I'm thinking, duh!  How dense are you?!  But that's no way for me to talk to myself.... or is that something else filling my mind with more hurtful thoughts and feelings?

Life is messy.  It's so messy.  Oftentimes it feels (there are those feelings again) like we are going to be lost in the storm forever.

I'm thankful for friends who can sometimes see more clearly than I.

I know it seems impossible, but you will make it through this. 

You will figure this out. 

I believe in you. 

I love you. 

These are the thoughts we should be focusing on.  

I Do What I Want

I'm trying something new these days: I'm doing what I feel like doing.

Life is stressful.  It's more stressful than I tend to admit.  I am reminded of this when I meet new people and I hear comments like, "Wow, I can't believe you do all that!"  I'm not trying to toot my own horn here (as much as I like to do that sort of thing) but I often downplay those kinds of comments.  I say stuff like, "Well, homeschooling Marie is pretty easy because what she's learning is so basic and we do it over and over and over again."  In reality, however, it's extremely difficult and my emotions play a large role in that.

I'll use our recent weekend as an example.

Second night kids roasted hot dogs and we adults had steak
and corn on the cob.  Uber yummy.

We went camping and it was fun!  When it came to sleeping through the night, Mr. Sexy and I were worried about Denai.  We knew Michael would sleep like a rock and assumed Marie would be too scared and cold to venture out of her tent to "explore" and scavenger for "snacks."

I used the word, assume.  Don't miss that.

Saturday morning arrived and I opened the trunk of our mini van to get out the breakfast goodies.  My heart started to pound through my chest, my hands felt clammy and my ears were burning.  Marie did, in fact, have it in her to go through the trouble of finding food even in 30 degree weather.  (It may not have been that cold but it was pretty darn cold at night!)  She ate 2 protein bars, 3 nutri-grain bars and our bag of hot dog buns.  All of these packages were sealed as of the night before.

She spent the entire morning sitting on her hands in a chair while the rest of us ate breakfast.  Then when we got home she wrote 100 sentences: I will not be sneaky.

Breakfast time.

It's now Wednesday and I'm still having trouble letting go of what happened camping.  I'm still reminded of the erasers, too.  I just don't understand it.  Not one little bit.  In my non-understanding I'm frustrated.  With the frustration I find anger.  And when I allow anger to be in control, the Sexy household isn't all that fun.

So like I said earlier, I'm practicing doing what I feel like doing.

Not in bad way, though.

For instance: Monday I decided should be a no school day so that's what we did.  I had two easy-to-reach goals which I accomplished.  Everything after was gravy.  Yesterday I didn't feel like spending 5 hours in the den trying to teach Marie about capitals and lowercase letters like I have been doing for months now.  So I didn't.  She performed her computer work and I let our school day end with that.

This concept of doing what I feel like doing isn't a long term solution to life problems and it won't work for everyone - at least, not all the time.  But for now it's helping me to relax during my day and realize that life isn't just about the accomplished tasks.  It's okay to take a break.  Maybe that's what I need in my days right now.

I'm linking up with My Sweet Peanut because it turns out I blogged about the topic:

Frustration 

Bed Wetting and Eating

Things have been going okay.  Good, actually.  We have had happiness and successes these past few weeks.  Marie told me she loved me and she even looked at me in the eyes when she said it.  Typically she says those three words to empty space in front of her after leaving the room I'm in.  I only know they are meant for me because she says my name, "Mom."

Two days ago she peed her bed.  She had gone just about two weeks of being dry.  I was disappointed.  I still am, in fact.  I don't understand this struggle so it takes a lot of work to let it go. Marie's pediatrician was the first one to mention constipation as a major component to Marie's consistent bed wetting.  So, Marie's nighttime routine now ends with pooping.We gave Marie some medicine for a short while and ever since we have made sure she poops every night.  After she is all ready for bed we tell her to go poop and she sits on the toilet until it happens.  Sometimes it will take an hour.  Sometimes 20 minutes. We discovered, however, that we need to check the toilet to make sure it happens.

 Well, two nights ago Marie flushed on her own.  Since she has been so consistent Mr. Sexy and I didn't see it as a big deal.

The next morning she was soaked.

Did she poop the night before?  We'll never know.  I didn't ask her because, frankly, she won't give me a straight up answer regardless of whatever the truth is.

And now it's been a few days.

I'm sitting at my desk and looking at remnants of pencil erasers.

After dinner she does homework.  Last night she also ate some eraser.

When I ask her about this kind of stuff I can tell immediately what the answer truly is by her demeanor.  If she blankly stares and then looks around, trying to figure out a "correct" response, I know she has no idea what I'm asking her about.  BUT if she presses her lips together, gives a sigh, looks down, I know that she knows EXACTLY what happened.

Her first response is, "I," at which point I remind her (in that overly stern mommy tone I harbor) that one word makes no sense.

She then says, "I do not eat it."  This is the response she knows I want.  She knows she wasn't supposed to eat the eraser.  So, like any very young-minded child she attempts to tell me the best possible "truth" and the result is she ends up telling me, "I ate it."

She has a history of eating things whether it's binging in the kitchen in the middle of the night, snacking on crayons in bed, or now, eating erasers while I'm upstairs doing other things.  This behavior is progressing steadily.

What the hell am I to do?  Never leave her alone ever?  Send her to a special school because maybe then can figure it out?

Mr. Sexy's idea is to take everything edible out of her reach.  It's such a broad idea I can't figure out exactly what that would mean or what it would look like.  Our current night time system is that she has a few barriers so she can't get up and wander around, which is when she is most likely to get into mischief.  So do we take all "edible" items out of the entire downstairs where she spends most of her time?  She has eaten books before.  And toys.  We have lots of books and toys and papers and crafty things down here.

Mr. Sexy and I decided before we do anything drastic we need to go back to the specialist.

This most recent incident proves that Marie is in no way eating out of hunger.  She is eating because..... who the hell knows.

But I'm pissed.  And I don't have time to be pissed.  I don't even have time for venting on this blog.

 I am learning the part of Elaine from Arsenic and Old Lace to perform in their last show on Saturday.  The girl who plays that character is sick so while I joked with Mr. Sexy about that being a fun challenge, he told the directors who ran with the idea!

So for now, Marie gets no privacy unless she is in her room.  Her room is actually the one place where there is nothing "edible."

Side note:  I didn't write this post for advice.  I don't mean to be rude but we get a lot of advice.  At this point, I am only interested in the advice of someone trained in this area of eating what shouldn't be eaten and trained in special needs.

R is for Rewards: My Journey Through Parenthood

R is for Rewards.

I have found that a reward system for my kids work great.  It coincides with the idea of consequences.  The key is knowing what motivates my kids.  Some rewards are unhealthy, some they will work very hard for and some they won't give a flying hoot about.

For instance, Marie has an obsession with food.  Therefore, I don't offer her food rewards of any kind.  She does love stickers which is an incredibly easy reward to offer for something tiny like blowing her nose on her own or for getting a perfect score on a quiz or worksheet.  Then there are some bigger rewards she would just die for: The movie Frozen.  Time to make jewelry with her gazillions of beads.  A shopping excursion or a trip to the salon.  Those are pretty big deal rewards for her.

Michael is a little more complicated.  He is moody and broody at times so different rewards engage him.  Today he was not happy about speed walking through the mall.  All we had to do was pick up my wedding ring and then we were done and headed to 5 Guys for lunch.  So we were speed walking - which is close to running for small people.  After getting our ring I decided: "Hey!  Whoever gets to the van first gets a peep!"  We brought some easter loot on our day trip into the "big city" and Michael was most excited about the peeps.  This worked magnificently.  He ran and gloated about winning and then ran some more.  Yup, he won.

What kind of rewards work for your kids?

This is the A-Z blogging challenge so go ahead and read the introduction and see a list of all my A-Z posts.

5 Hearts: One Team

"Remember, we're a team, babe."

I forget that we're a team.  I forget that I don't fail alone.  I don't succeed alone.  WE fail.  WE succeed.

Since we have been together I have seen my struggles with Marie as just that.  MY struggles.  What I'm only beginning to see after all this time is that my struggles are his struggles too.  I have never really allowed myself to lean on him.  I have leaned on others, of course.  For the most part I have scared those people away.

Something has been clicking lately, though.  Maybe it's because we moved into a house in the woods with little distractions.  Maybe it's having Mr. Sexy home for dinner every night.  Maybe it's homeschooling Marie and seeing how the public school system has failed her.

In some ways I lean on Mr. Sexy in a way that is unfair.  There are thoughts, feelings and emotions that I have that are hurtful toward Mr. Sexy as her daddy.  She and him have a heart connection.  They have "the fluffy's" that I don't yet share with Marie.  Perhaps I never will which is a very realistic possibility.  Yet we all still need to live together, respect each other and care for each other.  Even if we don't all have a love connection .

The love connection, for me, took a few weeks into Michael's life for me to find.  I had spent my entire pregnancy regretting mistakes and feeling embarrassed.  So when baby arrived he didn't feel like mine.  At first.  But the love connection happened.  It grew and grew and grew.  With Denai the love connection was immediate.  I had a wonderful pregnancy full of excitement and hope so when she was born I was enthralled to hold her in my arms and call her MINE.

Marie is different for obvious reasons.  I didn't give birth to her.  I didn't grow her in my body.  I wasn't there to see her take her first steps or learn her first words.  I wasn't there to teach her how to go to the bathroom or how to behave when wearing a skirt.  I showed up when those skills were already being taught if not already engrained in her mind.  I never had the chance to allow a love connection.  I have tried to force it which was never fun.  Even if our impromptu dance party appeared fun by smiles and laughter I knew I was forcing my arms to swing back and forth and for the smiles and laughter to come out.

Yesterday was a failure.   After watching the video footage from that night I saw that she spent twenty minutes in the den.  I couldn't see what she was doing but I could guess after seeing remnants of eaten crayons in Marie's bed.  This made me mad.  Very mad.  I did not respond in a loving manner.  I responded based on how I felt.  Thus, I failed.  We failed.

I do believe that we each should take personal responsibility for our actions and that one day we will all be held accountable.  When I make a mistake I should take responsibility and not blame something or someone else.

At the same time, a family is one unit.  We are not alone in that unit.  We celebrate together, we lift each other up and we work together to grow and be closer.  So as we all make mistakes and say mean things to each other, I would say that constitues as a failure.  As we enjoy time together playing games, I would constitue that as success.  So as a family we should be lifting each other up through the good and the bad.  It's not just my job to make good choices.  It's Marie's job too.  And Michael's.  And Mr. Sexy's.  And one day very soon Denai will be joined in the mix.

"I'm sorry we failed."

It felt weird to say that yesterday.  I knew he wasn't the one who got angry at Marie.  He wasn't the one who ate the crayons and tried to hide it.  But he is part of this family.  And we are a unit.

We fail together.  We succeed together.

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!

Issues of Self-Control

A big part of my blogging journey via Risk Rejection is to continue writing as I did last year about my daily life.  I tend to write from very strong emotions and sometimes it seems I have a lot of negative emotions.  I am overall a happy person and enjoy my life (even with all the bugs in my house) but it's true: I do deal with a lot of negativity in my emotions.  Every day I learn how to deal with them in a better way, a healthier way.  And today - this morning - is a prime example.

To you, it's just a little bit of cheese.  In fact all it was were crumbs - the leftovers from my breakfast.  To me, it's not just a few crumbs of cheese.  It's disobedience.  It's ANOTHER weird food issue/incident.  It's Marie making another bad choice, one she has made countless times over the years, and when I ask her why she did it, I get the same answer: "I don't know."

It's down syndrome.  Friends can tell me it's not just down syndrome.  Other kids struggle too, kids who are perfectly "normal."  But she has down syndrome so her brain works in ways I don't think I will ever understand. Therefore, she has an obsession with food that Mr. Sexy and I have yet to figure out and overcome.

As I was brushing Marie's teeth this morning I thought it was gross that she still had bits of food on her tongue from breakfast.  Wait a minute.  That's weird.  I asked her once what she ate.  She immediately lied about it as I expected.  I asked again and this time she gave a big sigh and looked down at the counter.  Oh yeah, I was on to something.  After a few minutes she did tell me she ate cheese.

It took a split second for me to go from relatively calm to shaking and hot with anger.  An immediate time-out was in order for both of us.

"Time-out!"  

I shut the bathroom door and basically ran down the hallway to call Mr. Sexy so he could help me diffuse the situation.  Talking to him didn't really help.  (Sorry babe.)  He was pretty stressed out with work and his answer was, "We should deal with it tonight."  The thing is Marie probably wouldn't remember the incident by the end of the day.

I felt I had to do something.  But what?  I wanted to punish her and I wanted the punishment to hurt her so she would remember the pain and not make that bad choice again.  Well, that's no way to get a child to fix their mistakes.  And do I really want Marie to make good choices out of fear?  That type of obedience will never stick.

Now let me explain where I'm coming from here.

Back when Marie was just 5 years old she would get up in the middle of the night and raid the fridge.  By raid I mean she had every single item out of that fridge and ALL of it was headed to her tummy.  This habit continues today.  We currently have some safeguards in place so she can't get to food after bed time and we are hoping to work on the issue this summer.

It's not just at nighttime that she likes to grab an inappropriate snack.  Sometimes it's early in the morning on her way to the laundry room and no one is around.  Sometimes it's when Nanna turns her back in the kitchen and then a cake pop has disappeared.  And sometimes it's while I trust her to be putting away dishes and not to snack from the crumbs on the counters.  It's an issue of self-control.  She doesn't have it.

So back to my room and blood-boiling anger and feeling totally alone in the situation.  I had just used the one life-line I felt I had and it didn't help.  I paced my room and I grunted out of frustration.  That's a better choice than full out screaming in my opinion.  I took some big deep breaths which only produced frustrated tears.  I felt helpless because my emotions were so overwhelming I thought they would eventually completely take over.

I wanted so badly to come up with a good consequence for Marie that would impact her but not cross those lines into fear-parenting.  I just couldn't think straight.  I paced, I grunted, I breathed big and deep and I cried.  I was fighting against my sinful nature.  This isn't a new fight for me but that doesn't make it any less difficult.

As I used my de-stressing techniques my heart slowed and I cooled down.  Sentences.  I used to have Marie write sentences.  Yes!  That would work!  Sentences are not fun AND she could practice the correct action in her head during each one.

I was still pissed but no where near the boiling point any more.  I was the one in control.  I felt ready to get Marie, sit her down and explain her consequences.

But first, I had to tell her good job for telling me the truth.  I'm sure that bit of the conversation sounded pathetic as she was sad and I was mad.  But I tried.  Thank you so much for telling me the truth.  Telling the truth is always a good choice.  I think I said those lines like three times hoping she would see that I actually was proud of her for that.  Maybe I can talk to her about it again later and she will give me a real smile.

Then I laid out her consequences:

1. She is not allowed in the kitchen until I decide (basically when I'm ready to let go of the incident)

2.  Because she has shown she doesn't know how to handle food properly, I will be feeding her during lunch and dinner.

3.  She will write 100 sentences.

I'll bet some of you are reading this and thinking I'm a terrible mom because these consequences may
seem harsh to you.  But the fact of the matter is Marie MUST learn to control her urges to eat food.  I honestly don't care AT ALL that she snacked on cheese.  I care that it's all part of the pattern of sneaking food into her belly when no one is around.

My hope is that if Mr. Sexy and I can I have regular, serious consequences for this particular behavior then by the time she is ready to move out (this WILL happen) she will have an appropriately learned behavior of when to eat and how to eat.

Again, eating a little bit of cheese isn't a huge deal.  But eating an entire jar of peanut butter is.  Drinking an entire bottle of chocolate syrup isn't that great for you.  Eating half a bag of that cheap-o bubble gum isn't great for your stomach and neither is eating an entire jar of vitamins.  Marie has done all these things and more.

So eating a little bit of cheese, right after breakfast, while she is putting away dishes and I'm taking  care of the baby, it's a big deal.      


Disclaimer:  I understand that all our kids go through these issues.  But Marie is 12 and she still continues to eat inappropriately whether it's an entire loaf of bread she snuck to her room or crumbs of cheese she stuffed in her mouth as soon as I left the kitchen.  I truly desire her to have self-control and the ability to make wise choices.