Sunday, September 30, 2012

Content

M's fourth birthday is a week from tomorrow.  He decided on a super hero birthday party way back in June, when we were planning L's "choo-choo duck" pool party.  I really love celebrating my boys' birthdays and always let them choose the theme.  This one snuck up on me a little, but I'm excited.  I can hardly believe he's turning 4.

I think I have settled on what I will do for his birthday cake, too!  If we had never gone dye-free, I probably would be planning some cool Captain America's shield cupcakes.  (I had a picture here but it wasn't mine and I just read a scary article and don't want to make any trouble, so I'll let you do your own googling.) Of course, the night before I'd be cursing myself for choosing something so complicated, and they would never actually turn out this cute, but it's no fun without a challenge, right?


But since I don't know where to find natural dye in Bangkok (and I wouldn't want to pay 35 dollars for a set, even if I did) I need something simpler.  Like a friendly, neighborhood spiderweb cake.  I could do it easily without using any dye or other additives, and it would fit right into the superhero theme.  I haven't decided whether I'll make it a chocolate cake with just spidey's web as the icing, or if I'll ice it with chocolate frosting first and then add the web on top.  Decisions, decisions!  (I had another picture here... just google spiderweb cakes.  I'll take a picture this weekend and put it up.)


As I sit here planning his party, I feel overwhelmed with blessings.  We aren't rich, but we can afford special treats for birthdays without a second thought.  We have friends who love us and will join us to celebrate, even on short notice. (Sorry guys, it's next Sunday!) and we have a home to welcome them in to.  We have beautiful, healthy children. And since we have found a way to help M deal with his self-control and emotions, we won't spend the entire party apologizing for him and sending him to time out. We are truly blessed.

The funniest part, though, is that normally my mind would still be fixed on those Captain America cupcakes. Even with a long list of things to be grateful for, I would allow myself to get caught up on the one thing we couldn't have!

My book group is reading Linda Dillow's "Calm My Anxious Heart" this month.

Books like this help me see the big picture.  I am a person that is easily distracted by details, and I have a bad habit of giving negative things more than their fair share of my attention.  This book has challenged me to stop complaining and choose a perspective of gratefulness.  As I imagine lighting the candles on M's spidey cake and singing happy birthday to my sweet four-year-old, I feel truly content.

Saturday, September 29, 2012

Just a regular bloody lip

I guess I'm still skittish from L's seizure last week.

Though he rarely suffers from them now, there was a time when every bump was a threat and every scary dog was a trigger.  The last two months have been a welcome reprieve, but it only took one to get me right back to my old mindframe.

Today L was climbing over me in bed, and he lost his balance and faceplanted hard on my chest.  When he stood up, blood was streaming from his lip, and he had that look in his eye.  I instantly went into seizure mode.

But before I could scramble up and get him into the recovery position, he caught his breath and cried.

Exhale.  I forgot that this is normal.  Seizures aren't normal for us, anymore.


He stopped crying when he saw himself on the camera.
Right here, Mom, pray.  Hurt right here.

Seizures will probably always be a part of the background, but thank God they are no longer front and center.  Today it didn't have to be about RAS.  It was just a regular bloody lip.

magic chocolate

Most Feingolders have a trick up their sleeve to help their child get through reactions.  While we don't actually follow the Feingold program, it is very similar to how we eat, and we can learn a lot from them.

We're going to pick up some Epsom salts one of these days to give that method a try, and of course we have our young coconut, but the one I hadn't really tried was baking soda.  They say 1/4 to1/2 teaspoon of baking soda mixed into honey or jam (or anything you can think of to get it down) helps kids dial it back when they're having a reaction.

Today M told me he was having a reaction and put himself in time out on the piano bench.  I don't know what he had eaten, but I believe him.  His eyes weren't swollen, thankfully, but he was weepy and overreacting, he had been blowing up at L all morning, and just didn't feel like himself.  I'm proud he's starting to recognize the symptoms.

The other day on the Feingold facebook group, someone commented about mixing baking soda into a little bit of melted chocolate and honey to make a candy that masks the taste.  Genius!   I gave one to M this afternoon and made a few extra to keep in the freezer for emergencies.   

I wish I was having a reaction. ;)
I'd like to try it again before I declare it a miracle cure, but there were no more tears or outbursts for the rest of the day.

(Note: I feel compelled to warn here that while baking soda is safe and natural, it does warn on the box about not using it as an antacid more than 7 times a day, not using the maximum recommended dose for more than 2 weeks straight, and not giving it to children under the age of 5. M will be four next week, but since he only got 1/8 of a teaspoon, I'm not going to worry about it.)


Thursday, September 27, 2012

When I was young we called these kids stubborn...

There is a misconception, even sometimes within the medical community, that RAS is caused by stubborn toddlers and permissive parents. 

I've been told L is spoiled, and that if we just put our foot down and ignore his seizures, he'll improve.  I've been laughed at for talking about "a tantrum" like it was a medical condition.   I've been warned that L has found a way to attract attention and he'll keep "holding his breath" as long as he keeps getting it.

It's true that L's seizures are caused by lack of oxygen to the brain.  But L doesn't hold his breath.  His heart stops.  His breathing stops.  He cannot cause a seizure because he wants to, and he can't stop one if he tries.

Needless to say, I am not a big fan of this misconception.
 
And it would be so easy to make this post about how RAS is a real medical condition and the breath-holding is a stubborn kid's trick.  But even if it is intentional, breath-holding has real effects, and in some cases, it's severe enough to cause seizures.  The families dealing with breath-holding are probably suffering just as deeply as we are.

It's hard to be a mom dealing with a difficult medical condition.  Movies like Despicable Me that make light of breath-holding don't make it any easier for anyone.

 

Blues Brothers

This is why I don't like going to work


Wednesday, September 26, 2012

lessons from Pinterest

He was excited.  A balloon AND science?
Emboldened by our awesome pinterest-inspired science activity earlier this month, I couldn't wait for M to ask to "do science" again.  I had already found the perfect thing:  Baking soda/vinegar balloons.

No, the balloons don't fly (she never said they did, but that's Pinterest for you!) but M remembered the baking soda and vinegar combination, and the addition of the balloon guaranteed a success.

The balloon blew up by itself!





































It was a hit, and I had this takeaway:  If someday, against all odds, some particular post from my blog goes viral on Pinterest and everyone misquotes me and then people come here and post complaints about it, I am going to channel this woman.  What a gracious response.

Tuesday, September 25, 2012

Time for me

I forgot to take a picture last night,
so how about some Pinterest humor?
Yesterday I met with 'my' book group for the first time in over a year.  Oops, sorry girls!

I understand and agree when other women write and talk about the importance of "mommy time" or "me time" but I never seem to be able to manage it on any kind of regular basis.  The thing is, I can see why stay-at-home moms, in particular, would need to carve out time for girlfriends, alone time, or -let's be honest- just a break.  But I am already away from my kids all day long.  They're still asleep when I leave for work in the morning, and if I go to book group, or a baby shower, or dinner at a friend's house, they're already in bed by the time I get home.  It's a whole day of their lives that I am not a part of.   I've read about how parents these days take ourselves too seriously and that every little thing we do doesn't matter the way we imagine it does.  It makes sense.  Our parents didn't worry like this.  I still don't like to be away too often.

But whenever I do take time for myself and my friendships, I am always so glad I did.  Yesterday, we discussed the book "The Spirit Catches You And You Fall Down," our book for the month.  But we also talked about our families, our pregnancies, our struggles... And I have to admit: It was wonderful to not think about anyone or anything else.  Our stories weren't interrupted and abandoned because of potty breaks and time-outs.  The mall was closing around us as we talked, and talked, and talked.  Not surprisingly, my kids woke up this morning happy and unscarred.

I can't promise that I'll go to every book group from here on out.  But I'm having dinner with friends a week from today, and I know it's going to fill me up in a way that makes me a better mom.  Even if the kids are already asleep when I get home.

What's your take on "me time"?  What do you do to recharge?


Sunday, September 23, 2012

Cinnamon pumpkin seed butter

Shh!  I had to use the empty seed packet because
I forgot to take the the picture before I started.
It's almost October, and in Bangkok, there is no such thing as Fall weather. So we fake it with air conditioning and fall food.

A little bit of cinnamon and honey turned our staple pumpkin seed butter into a fall treat.

One packet of pumpkin seeds (pre-shelled unless you're crazy) blended with a drizzle of honey, a sprinkle of cinnamon, a crank of sea salt, and a splash of coconut oil. Very precise of course!

I ate it with sliced apples and imagined brisk Washington autumns.

I will make it this way from now on, but only until February.  Fake-fall food in Spring?  Ridiculous!




The future

Sometimes we get little glimpses of the future.  Thanks, Uncle Brett, for at least 20 minutes of fight-free playing.

Saturday, September 22, 2012

Perspective

After 69 days seizure free, L had a seizure Thursday night.  Sixty-nine days is the longest he's gone without a seizure since he was first afflicted about 18 months ago.  Still, it's hard not to see it as a failure.  My failure.  The boys' diet had been imperfect over the weekend, L missed his nap that day, and the boys were worn out and testing the limits as we tried to pick up the last few things at the grocery store.

L and Whim bashed heads over the shopping cart's toddler seat, and once again, L and I ended up on the floor, his body contorting in my arms in a way that will always be familiar, no matter how long a reprieve he manages. 

My first response was to blame myself and look for things I could do differently to assure it will never happen again.  But I'm recognizing the faults in that way of thinking and choosing a different perspective.  At the time we started the diet, L was having several seizures a day.  It's not unreasonable to assume that, had we not started the diet, he might have had more than 200 seizures in those same 69 days.
Day 2: more beautiful moments
We have filled those 69 days with beautiful moments, and on many of those days, seizures never even crossed my mind.

When his seizures were at his worst, if you would have asked me what I'd do to buy him 69 seizure-free days, I would have done almost anything.
With that perspective, 1:69 is looking like a pretty good ratio.



Friday, September 21, 2012

The Hulk

Last Sunday, M chose this mask from a lineup of every superhero imaginable.

I don't have to wonder why.






Whim is teaching M ways to overcome his reactions.  He talks about growing up with reactions just like M's, and I don't doubt it.  But without the benefit of the diet, he had to learn ways to manage his impulses.  And get kicked out of multiple schools in the meantime.

Communicating with M in a way only a Papa could, Whim has turned M on to the idea that having a reaction is like Bruce Banner changing into the hulk.  At first, it's out of his control, but he learns to manage it.  Whim is teaching M to close his eyes, breathe, and pray when he feels a reaction coming on.  At almost-four years old, he has never (yet) used reactions as an excuse for misbehavior, but regardless - he needs to learn that he can choose to behave, no matter what he has eaten.

It's hard for me to hold M accountable for what he does when he's "under the influence" of food additives.  When I see him melting down over shirt tags or going right back to the same misbehavior seconds after being disciplined, to me he looks like the victim.   I want to tell him that it's not his fault.  I want to lash out at the companies that sell crude oil disguised as food additives.  But instead, we pray with him.  We talk to him about consequences.  We pull patience out of places inside us we never knew we had, and we hold him to the same standard we do when he has eaten clean.  He has to learn that he is responsible for his choices no matter what.

Days without incident.  0.

69 days. Restart.

I hate seizures. 

Wednesday, September 19, 2012

The reminder weekend

I hinted in my post the other day that our weekend at the beach may not have been 100% awesome.   

Even though we did have plenty of nice moments like these:











We also needed an awful lot of these:





















The waitstaff told us that every dish the hotel served was prepared with MSG.  Of course we ordered separately, but somehow M still ended up with bad reactions for about 3 days.   The coconut has saved us many times, but this time, while it can probably be credited for keeping me from completely losing my mind, it wasn't enough to fully control his reactions.  (I think next time I might try the baking soda and honey, too.  It can't hurt, right?)

This weekend gave us a good reminder.  M was overly emotional and broke down whenever he was frustrated or had to change plans.  On Sunday (a full day after he had eaten any offending food) he was constantly in trouble - pestering people, hands all over everyone, impatient, unresponsive to discipline... It was a sober reminder of what our lives used to be like every day.  I'm so thankful to God that we have found this solution for him. 

M's first homework

This is an old picture, but it's the one we
chose for the project

M had his first homework today for his preschool co-op.  He had to answer the following questions for a project they're going to do in two weeks (for F week.)

These are M's exact answers with no prompting from me.  Number 6 is my favorite, but 5 is a close second.


1. How old are you? I am three years old.
2. What is your favorite toy?  Airplane.  I have one.
3. What is your favorite food? Noodles
4. What do you like to do with your family? Read books together
5. What is something you don't like? Additives (I swear I did not coach him on this)
6. What do you want to be when you grow up? A boy
7. What weather is your favorite and why? Sunny because that's my favorite.  Because I love sunshine.  {sings} Please don't take my sunshine away.

Monday, September 17, 2012

When did he get so big?


The one in which I want to kill the doctor

After L's first seizure, I waited.  It's hard to match the anguish of a mother powerless to protect her child from a looming danger.  And even though the doctor said that first seizure was a fluke, I knew we were dealing with something real.  I felt dismissed and disrespected and wanted to dig my nails into the door casing and refuse to leave until she promised to help him, but I latched on to one thing she had told me: "Two seizures without known triggers signaled epilepsy."  So I waited for him to have another seizure.  It wasn't that I wanted him to have epilepsy - I just wanted some answers, and I knew we wouldn't get any until he had another one.

L's second seizure was in July of 2011.  He was just over a year old and we were visiting the States during my school break.  After a long day of sightseeing at Pike Place market, we stopped at the Gap on our way back to the hotel.  Typical, scampy L kept trying to crawl out under the stall door while I was changing.  Over and over, I'd let him get just inches from freedom, then pull him back inside.  He was one part amused, one part irritated, but kept it together until I accidentally stepped on his finger.  After a long, silent cry like I had seen that day in the car, he fell into another seizure.

The main difference between this seizure and his first was that he made some eerie moaning sounds during this one and afterward, when he came to, his cry was pitiful and heartrending.   I don't remember that agonizing cry after his first seizure, but it has happened every time since, so I probably just missed it that day in the relief of seeing him "come back to life."   The moaning remains a mystery to me, as it happens during some seizures, but not others, without any rhyme or reason.

We were already on our way back to Bangkok, and we made an appointment almost as soon as we arrived.  I felt almost triumphant.  He'd had his second seizure; now she owed me some answers.  Instead, it was more of the same.  She didn't think it was epilepsy, since both "seizures" seemed to be triggered by pain and frustration.  She mentioned Breath Holding Spells and told me that in a nutshell a) he was spoiled and b) we shouldn't let him cry so much.

Furious, but still hoping to come away with something useful, I asked if there was any medication that could help him.  She paused and answered wryly, "There's no medication to make children stop crying."

There are a lot of things I could say about this woman, but in the end, I'm grateful to her as one piece of the puzzle.  Her mention of Breath Holding Spells is what ultimately led me to discover Reflex Anoxic Seizures (thank you, Google!)  And once I was fairly certain it was what we were dealing with, I made an appointment at another hospital, specifically requesting a doctor that was known for listening.   We got our diagnosis within a few months, and the rest is history.




Sunday, September 16, 2012

Not worth it

Ever since we cut out the additives, I have been making more and more foods from scratch.  Some things, like sunflower seed butter, are amazingly easy.  It's over a hundred baht for a jar much smaller than a jar of baby food.  If I'm feeling snacky, I can go through that much in one day.  I buy packets of sunflower seeds for around 30 baht and make it myself in less than 5 minutes.  Fresh, healthy, cheap, additive-free.

You can't always find shelled sunflower seeds, though, and a few weeks ago Whim brought home two bags of seeds, still in the shells.  This morning, I wanted to make chocolate chip dip, so I tried shelling them myself in the food grinder.  I've decided that this is one thing that is NOT worth doing myself.  I don't know how much I'd save by my shelling my own seeds every time, but however much it is is not worth it. 

After over an hour of grinding, picking through the shells for usable seeds, and regrinding the shells that were still whole, I had a measly palmful of seeds at the bottom of the dish.  A whole bag yielded less than a quarter cup of seeds!  I gave up and decided to make sunflower/sesame butter instead.  I hope it works just as well.

Have to make it thick or the dip is too runny!


Saturday, September 15, 2012

Fairytale days

I have this love/hate relationship with some of the blogs I read.   On the one hand, I love reading blogs about happy women with gorgeous, healthy children and thoughtful husbands.  Who doesn't like pictures of cheerful, well-groomed children playing on freshly-cut grass and eating ice-cream cones?  I'm inspired by their creative ideas, tidy homes, handmade gifts...

But sometimes it just doesn't feel real.  Aren't their kids ever bratty?  Don't they ever let their kids skip baths and sleep in their clothes and eat pb&j sandwiches for breakfast because they are out of milk and eggs?  Surely I'm not the only mom who doesn't make sensory tubs and themed lunches and seasonal hearth displays? 

I know the truth, though.  Everyone else is stumbling through the best they can, just like I am.  One reason I know this is because, this weekend, without really meaning to, I started planning one of those fake blog posts in my head. We went on a retreat to a nearby beach this weekend with my coworkers, and I took advantage of the perfect lighting and lovely scenery to take some beautiful pictures of the boys.  I was envisioning a post about getting away and how much the boys love the beach and how we need to do this more often.  The pictures I was mentally selecting painted just the right picture, and other pictures that didn't fit the theme were passed over.


Picture I chose: carefree beach boy
Picture I passed over: crying because he got splashed by a wave





Picture I chose: content and peaceful
Picture I passed over: "Up me! Up me"





My perfect "Whim, jr" picture of M.   Actually, I deleted about 11 pictures of him
refusing to pose with Papa and finally settled on this. I love it anyway.






People just don't blog the moments that don't paint that perfect picture.  And I do understand that.  We've all be taught not to air our dirty laundry.  And who wants to see pictures of someone else's kids being brats (especially when they've been dealing with their own kids all day.)

But it's real.  And I don't have much time to devote to reading fairytales about what parenting would be like if kids were always adorable and patience was limitless.  Besides, even though my life isn't perfect, I do get some pretty picture-perfect moments.

Wednesday, September 12, 2012

The spirit catches you and you fall down

My book group is reading "The Spirit Catches You and You Fall Down" by Anne Fadiman during the month of September.

Actually, I'm being generous with myself by calling it my book group.  I joined last year but only went to one meeting.  I love to read and I do read the books every month, but somehow I just don't ever manage to make it to the meeting.  There's a lot of reasons: I only see my kids a few hours a day after school, and I feel guilty when I miss that time with them.  Whim needs a break after being with the boys all day and when I go out, he has to manage the boys on his own all evening, too.  It's expensive.  And even though I like it, it's draining for me to spend time with people after school.

Anyway.  This month, I'm not going to miss it.  I'm only 75 pages in, but I feel a connection to this story.  Anne Fadiman writes about a Hmong family's struggle to juxtapose their cultural understanding of epilepsy with the American medical system.

Again, L has RAS, not epilepsy, but I'm going to go out on a limb here and say that there probably aren't going to be many books out there about southeast Asian kids with RAS.  The Thailand and seizure connection is enough, and the third-culture element is icing on the cake.  I'll take what I can get.


Tuesday, September 11, 2012

Preschool week three

He was concentrating
M went to his third week of preschool today.  He had a run-in with additives last night and Whim said this morning was rough.  I was worried it was going to be an awful class and sneaked a peek at my instagram about halfway through, hoping to see anything that would assuage my fears.  I had to brush away tears when I saw the following pictures.












He was participating

He was excited
He was listening

He was calm and comfortable



















































































I had my doubts that M would ever be ready for something like this.  I've never been happier to be wrong.

Saturday, September 8, 2012

Epilepsy in Thailand

L has RAS, not epilepsy.  But nobody's ever heard of RAS, so when they hear that L has seizures, they think of epilepsy.  I don't mind.  There are differences, but when it comes down to it, no matter what the underlying cause, the seizure is what people remember.  And since most people associate seizures with epilepsy, even though Lennon isn't epileptic, perceptions of epilepsy affect him, too.

The real Thai word for epilepsy is โรคลมชัก (rok lom chak)- a compound word made of the words disease, faint, and seizure.  The faint and seizure disease.  It makes sense.

But what does everyone call epilepsy?  โรคลมบ้าหมู (rok lom baa mu)- meaning "crazy pig fainting disease".  I hate it.  It's not a cruel slur; it's the word even sweet, old grannies would use.  Whim claims that no one thinks of madness or pigs when they use the word (just like we don't think of boards when we say the word cupboard) but I can't believe that.  Epilepsy has an undeserved stigma here, and maybe one way to change that would be to start by challenging the harmlessness of such an insulting name.

He may be a little odd, but don't call him a crazy pig!

One thing food colors are good for

Hey, it changed to green!
Today, M asked if we could "do science."  A few weeks ago, we played with the dry ice that came in the Haagen Dazs take-home bags, making smoke and listening to the spoons ringing, and I'd told him we were doing science.

Today we didn't have any dry ice, so I pulled out an idea I'd seen on pinterest.  We had food coloring in the fridge that I knew we'd never use again, so the dropper volcanoes were perfect.

M loved squirting the colored vinegar into the baking soda and seeing the colors fizz and change.  He also made some clever observations like, "Colors are not good for eating, but they're good for science."

I agree, bud!

Thursday, September 6, 2012

Miss Mom and The Little Prince

Living in Thailand, our boys have been raised to call the adults in their lives Auntie and Uncle.   Relatives and close friends, naturally, but also friends' parents, our neighbors, the guards, store clerks, random passers-by.

When M came back from his first day of preschool, he called me Miss Mom.  Miss.

 
Something about it just pricked my heart.  Obviously there's nothing wrong with him knowing the word Miss, but it made me sad somehow.  I wondered how exactly he came to learn it.  Did he accidentally call the teacher Auntie and get corrected?  Did he listen to another child use the word and try it out hesitatingly?   I realized that this was the first of a lifetime of things that would happen for him, outside of the home, that I will only ever be able to guess at.

I'll pick him up after school, and when I ask him what he did today, he'll say, "Nothing."

"The little prince, who asked me so many questions, never seemed to hear the ones I asked him. It was from words dropped by chance that, little by little, everything was revealed to me."  Antoine de Saint-Exupery.



Wednesday, September 5, 2012

The one where I sound crazy


We have a secret weapon that we use when M gets into additives.

I've heard about Epsom salts, baking soda and honey, seltzer water.  None of them have sounded particularly impressive or inspiring.  But then again, neither would coconut, and the fact is, it's our miracle cure.

I don't know anything about why this works on a chemical level, but young coconut can pull M back from the edge after he's eaten something he shouldn't.  I had a hunch a few months ago when -two mornings in a row- M woke up sweeter and more under control than I'd ever seen him.  I wracked my brain to figure out what might be different, and the only thing I could come up with is that he'd had young coconut as a snack the evening before, both nights.  I've tried it several times since - he has never woken up "off" the day after having young coconut before bed and it has helped him pull himself together many times.

Thai people say that coconut water cleanses us of toxins.  That's the kind of thing I rolled my eyes about a year ago.  Now, M dutifully takes a few swallows of young coconut any time we can feel a reaction brewing.  I'm not interested in using our miracle cure as a safety net, allowing us to go back to processed, unhealthy foods.  But I sure am grateful to have something to help us when the accidents happen.

Here in Thailand, a young coconut is cheaper than a coffee and about as easy to find.  I'm not touting young coconut as an expensive, exotic, superfood cure-all. We eat it all the time anyway, which is how we stumbled upon its super power.  I wonder what other foods act as natural detoxers?

Monday, September 3, 2012

Pick your poison

We're all sick. 

M and L got sick first, then shared the germs with uncharacteristic generosity.  Actually they love sharing.  Especially food.   That's probably what got us in to this mess.

So Whim and I are out of energy, and it's more tempting than ever to just give them something to eat without worrying about additives.  Not to mention medicine.  I'd love to be able to give them a spoonful of cough syrup and call it a day.  But the last time we gave the boys typical dye-filled medication, M's eye swelled shut for 6 whole days.  On the sixth day, I couldn't take it anymore.  His eye opened up a crack within an hour of his first skipped dose.  The next morning he looked normal again.

It's a trade-off.  The medicine will eliminate some of their discomforts while compounding others.  And when it comes down to it, I'd rather they suffer the effects of their colds than react to the chemicals in the medication.  If we were talking about a serious, risky illness then I'd be willing to compromise.  But is it so bad to expect two healthy young boys to weather a cold without Red 40 and Yellow 6 every 4 hours for a week?  I think not.

I did find this home remedy on Pinterest that might do the trick.  Doesn't it look much more appealing?

Saturday, September 1, 2012

Party Cereal

Yesterday at the grocery store, M spotted this and excitedly asked for Party Cereal.


(Sorry!  I will take a new picture this weekend when we go back to the grocery store!  It's a box of life cereal completely festooned with balloons and confetti.)

 
Party Cereal!  He made that up himself.  I was 50% pleased with how stinking adorable my son is and 50% pissed at Quaker.   Why do they have to put two artificial colors in a grain-colored cereal?  It isn't just the colors either, it's also the 18-ingredient-long-list on the side of the box.  And you know they have a team holed up in an office somewhere who are paid to figure out exactly what box design is going to attract the greatest number of people, regardless of what's in the cereal or even what it tastes like.

M likes the taste of additive-free shredded wheat, puffed grains, and corn flakes.  He isn't dissatisfied with his current breakfast cereal situation.  But he sees this colorful, exciting box of Party Cereal and he wants it.

Instead of just saying, "No, that cereal has additives" and moving on (which thankfully M understands and accepts without complaint) I told him a little more.  I told him that some people who make cereal are bad guys, and that the people who made this box of cereal were a tricky kind of bad guy.  They made the cereal box look so fun to trick people into choosing it, even though it has additives.

M usually chooses not to eat additives without any prodding because he knows they make him miserable, and he didn't want it when he knew it had colors in it.  But he was particularly interested in the cereal bad guys.  Did I oversimplify?  Yeah.  But bad guys are important to M right now and I knew he'd understand it that way.  I want him to feel like he's making choices about good, healthy food, not just being stuck with whatever foods are left after everything fun and exciting has been ruled out.  

Hogwarts Express party

I was really only poking fun at myself when I said that this Christmas I could do something fun and call it a tradition.  But I did it.  This blog has been good for me!

Today is Sept. 1 and M and I are celebrating Hogwarts Express day in style.  Harry Potter movies and treats in bed.  L will be up in a few minutes and even though he may not follow the movies the way M can, anything that involves popcorn definitely has his seal of approval!


Disciplining with RAS

Is there anything worse than watching your child collapse into a seizure?  What about the pain of knowing, as their eyes roll to the side and they writhe painfully, that the seizure was your fault?

Most parents of children with RAS have probably felt this way more times than they can bear to admit.  I caused L's second seizure by stepping on his finger as he crawled around a GAP changing room floor.  (Needless to say, I left without any skinny jeans that day.)  I've triggered seizures by leaving a room without telling him I'd be right back, changing his clothes, misunderstanding him, startling him with loud noises, holding him in my lap in a taxi when he wanted to explore the dirty ashtray... but those were all accidental and unintentional.

How can you discipline someone this cute?
What about the seizures I've triggered by disciplining him?  We all know consistency is key when it comes to discipline, but I'm sure I'm not the only mom who has worried about causing a seizure as I deliver a harsh warning or a swat to the bottom.   Disciplining our children is already such a personal decision, and parents have to choose the method that feels right to them.  The natural response of wanting to avoid another seizure can tempt us to let things slide.
For me, I finally decided two things.

One: there are two choices when it comes to L.  A few years down the road, he can be a naughty, undisciplined boy who has seizures, or he can be a polite, well-behaved boy who has seizures.  There is no third option where he doesn't have seizures.   Of the two, there is no question what we want for him.

Secondly: when I discipline L and he has a seizure, I didn't cause the seizure.  I haven't ever caused any of his seizures.  He has an awful disease, and that horrible disease causes his seizures.  Though it may just be a matter of semantics, it helps me keep the right perspective.

His seizure are outside of my control.  As his mom, all I can do is prepare him the best I can for a good future, seizures or no seizures.  And training him to be obedient and well-behaved is one of the best things I can do for his future.