Barnmaven

So, it wasn't ghosts

For months now we've been having problems with our electricity.  Weird problems.  The lights will flicker dramatically for a few seconds and then half the house will lose power.  It will stay off anywhere from 10 minutes to several hours, and then pop back on like nothing ever happened.

None of the circuit breakers trip when these power losses occur.  Flipping the breakers on and off does nothing to make the power come back on.  Occasionally, like yesterday, it will come on if you flip on a single light -- the light comes on and so does everything else.

But the parts of the house that go out are not all on the same side.  The TV in the corner of the living room goes and the entry way light - but not the table lamps on the other side of the room.  The hood light on the stove goes out - but not the stove.  My bedroom lights and my bathroom lights go, as does my bedroom TV and the hall light, but the kids' bathroom right next to mine and the kids' rooms all work fine. 

This is annoying enough for obvious reasons - blow-drying your hair in the morning when there is no power anywhere near your mirror is a seriously inconvenient thing to cope with.  Many a morning I've had to stand in the kitchen with my little round magnifying mirror.  Not being able to watch a show when the kids have everything else tied up - or even worse, having the bedroom DVR shut off in the middle of recording this week's episode of Game of Thrones -- that's seriously impacting my world.  But the worst, the absolute worst part of it is how it impacts the kids.

My son's classroom is designed around helping children with autism learn social and behavioral skills.  Everything is based on positive discipline.  The kids have several tools to earn prizes.  Sticker books for a toy out of the classroom toybox, a penny board for bigger rewards at the end of a day if enough pennies are earned.  Race Car Man's challenge has been to earn the letters K-I-N-D-L-E every day.  If he displays an expected behavior - complying with a request, transitioning from a task, being kind to another student, working on the task at hand -- he earns a letter.  If he earns all of the letters, that evening at home he can do his favorite thing -- play Roblox on the computer, or Skylanders on the Wii.  It started off as earning Kindle back when I first got the Fire and he wanted to play on it all the time.  Currently he is obsessed with gaming, and it is enormously motivated to earn the privilege of playing. 

Imagine a day when he has been great -- TERRIFIC in fact, and he comes home excited to continue the level he had to stop in the middle of on his Skylanders game last night because it was bedtime.  He turns on the Wii, turns on the TV, powers up the Portal of Power, and puts the chosen Skylander on it.  He starts playing, and he's having a great time.  "Mommy!" he'll call out.  "Look what I got for Gill Grunt in my upgrade!"  If I don't come running, he'll pester me until I look.  He's enjoying his reward, rightfully earned.  Suddenly and without warning, the power goes out and his game cuts off. 

This would be hard enough for a neurotypical child.  For a child with autism, it is akin to the end of the universe.  You can imagine the screaming.

If we were lucky, the power would come right back on.  If we were not, it would be out for hours and my son would be nearly inconsolable.  If he and his sister were playing the game together I 'd have two upset children howling at the same time.  You probably don't want to check my store receipts to see how much the consumption of wine and comfort food increased since this started happening.

We had some very miserable nights the last few months.

Our first assumption was that it was spikes or lags from the utility district.  We've had a lot of new construction in our area the last few years.  A 5 acre field that used to have grapevines on it was turned into a small development for about 12 big houses, and there are similar developments popping up everywhere.  After all, the additional users has had a huge impact on our internet service.  Five o'clock rolls around and the internet slows to a damn crawl anymore.  (Hel-loooooo Charter?  Upgrade your lines already!)

I called the PUD and they sent a guy the same day.  He looked at the power pole in the pasture and the transformer on the street, took some readings at the box on the house, and told me he could find nothing wrong.  He determined the problem must be in the house.

I called an electrician.  They dispatched a technician to diagnose the problem.  He couldn't really find anything but made a couple of recommendations.  When I had the money to implement, I scheduled the work.  The guy came out yesterday and did his thing.  I paid him and he went on his merry way.

I left shortly after that to pick the kids up from school and came home 15 minutes later to find half the house was dark and unresponsive.  SHIT.  I flipped a few breakers, went to my bedroom and turned the light on - and everything came back.  OK.  Hopefully this was just a fluke because someone was working on the box?  Of course not.  We went to Race Car Man's therapy appointment and came back again to a house without half its power.  My son had earned his reward in school and been very good for his therapy appointment, and he was itching to play Skylanders, so you can imagine the level of meltdown.  I called the electrician back.  He said he would come as soon as he could.  The power didn't come on for a couple of hours, but managed to resurrect itself ten minutes before he arrived.

Figures.

He still couldn't find the problem, but while he was looking, it went out again.  He tested the incoming power to the breaker panel and guess what?  We were getting almost nothing in on the left side of the panel from the lines to the house. 

After a rather terse conversation with the PUD, two very nice gentlmen arrived and worked on overtime hours to fix what turned out to be corroded and loose wires at the transformer.

Somehow I don't think they're going to reimburse me the $500 I paid to the electrician for something I didn't really need, but I'll forgive them since all I really wanted was for the screaming to stop.

Common Ground

My children have spent the last three hours not fighting.

Let me repeat that slowly, for those of you who might not grasp the improbability of that statement.

MY CHILDREN HAVE NOT FOUGHT IN WELL OVER THREE HOURS.

I'm sure you realize how bone-deep I wish that I could chalk this one-in-a-million event up to my stellar parenting, the ungodly amount of money I've spent on doctors, therapy and medication or even the alignment of the planets.  Alas, all for nought.  (Well, probably not for nought, but you know I'm all about the drama, kids.  Get real.)

Why, then, you ask, are my children getting along so well?

(You did ask, right?)

 

Or, as I like to phrase it, EVERYTHING OLD IS NEW AGAIN AND SPEED RACER ROCKS THE CASBAH.

Climb into the time machine and let us take a trip back to 1971.

I am almost six years old.  I have fallen off a horse and (as we later find out) broken my arm.  As my mother frantically dials the doctor to describe my symptoms and ask what she should do, the only thing preventing me from shrieking like a banshee and ripping the bag of ice off my forearm is the fact that my crush , my love, the man I fully intend to someday marry is on television.   His show comes on and I am spellbound. 

He is Speed Racer.

Who does that crazy chick Trixie think she is, horning in on my boyfriend?

Its 1972 and me and my best friend Rich Butler play Speed Racer endlessly.  We turn my rope swing into an elevator that we ride down to the lab where we do crazy modifications on the Mach 5 and turn it into a space ship, a submarine, a horse drawn buggy, an armored tank.  We fight evil.  We win races.  GO SPEED RACER, GO!

It is 2011.

My son, he is in love.  The object of his affection?  A car.  Oh, not just any car, mind you.  The Mach 5 has been replaced, in Speed Racer:  The Next Generation, by the Mach 6. My son is rapt, and I can see he imagines himself behind the wheel, navigating every turn, repelling every danger. He is a hero.

My daughter?  She is in love as well.

Somebody needs to tell her that Speed Racer is already taken. 

 But it won't be me.  I'll gladly trade away my first crush for the blissful quiet that ensues when one cartoon wraps itself around this generation's heart and gives them, for one afternoon, something they can agree on.  SPEED RACER IS WICKED AWESOME.  And my kids are not fighting.

Boat...missed

Maura Kelly missed it by MILES.  Not only in her article denigrating overweight people and whether or not a television show should be showing displays of affection between them, but in her "apologetic" remarks that were edited into the post.

Ms. Kelly believes that anyone who is overweight can change that problem simply by eating unprocessed, healthy foods and exercising. 

Ms. Kelly said in her apology that she thinks its "great to have people of all shapes and healthy sizes represented in magazines (as, it bears mentioning here, they are in Marie Claire) and on TV shows--and that in my post, I was talking about a TV show that features people who are not simply a little overweight, but appear to be morbidly obese. (Morbid obesity is defined as 100% more than their ideal weight.) "

While I concur that for many people who struggle with weight that much of the issue can be addressed by addressing issues of diet and exercise, for many other people the issue is far more complex than calories in vs. calories out.  It is.

When we focus only on the mechanics of obesity - diet and exercise - we miss the mark by miles.  No one becomes morbidly obese by accident.  Nobody just 'forgets' to eat right.  Its just not that simple.

Unless we address important underlying issues, we won't get anywhere.  Until healthy food is more readily available and affordable than high-calorie, high-fat, high sugar crap, we won't get anywhere.  When its cheaper to buy a Big Mac than it is to buy a healthy meal, we won't win this battle.  When people in economically depressed areas don't have access to fresh fruits and vegetables, when the food that they can buy in the highest quantities are the foods with the lowest nutritional value, we won't succeed.  Until we address the issues of self hatred or PTSD that haunt many people with eating disorders such as bulimia or anorexia, we won't get anywhere.  Until we stop bombarding our young people with the idea that unless they are physically perfect they're worthless, we won't get anywhere.

And most importantly, every time we send people who aren't thin the message that their weight is more important than who they are as a person, we won't win this battle.  Stop overlooking fat people.  Not only do they have feelings too (which honest to GOD should go without saying), they are more than likely FAR more sensitive to comments about their appearance than YOU are. 

Don't tell me that an actor who happens to be overweight is less deserving of being in a sitcom than an actor who is thin.   Dont' tell me that a brilliant, funny, beautiful heavy person isn't a better actor and more worth my admiration than some skinny, pretty trainwreck like Lindsey Lohan.

What I want for the people I love is for them to be happy where they are, with who they are.  If they're not happy in the skin they're in, I support anything they need to do to get to that point.  But its not my job to tell them how they should look, how they should feel, what they should eat, how they should exercise.  I choose my friends by far more complex criteria than their physical appearance. 

Fact is, if you look at a person who is overweight and ALL you see is their weight?  You feel superior because you're thin and they're fat?  You think you're a better person?  You're more screwed up than they are.  Period.  Shut the hell up and go look in the mirror.  Point your judgmental finger at yourself and solve your OWN problems.  Look in your soul and find a little compassion.  Stop making assumptions about how that person got to be where they are in life.  Accept that the world isn't going to conform to your demands and expectations, and open your mind to the thought that people who don't look like you have every bit as much value, are every bit as smart, creative, funny, capable and wonderful as anyone else.

Maura Kelly, you missed the boat, sweetheart.  Its not as simple as food, and its not as shallow as representation.  Its about throwing aside the assumptions of your own experience, seeking the humanity that exists in each and every one of us and honoring that FIRST.   Its about opening your mind to the idea that beauty wears many faces and they don't all look like YOU.

 

***thanks to Adrienne and her amazingly well-written blog post for bringing this subject to my attention and my soapbox to my feet.

Holding tight to now

I save laundry folding for nighttime.  I pile everything on top of my bed, pour myself a glass of wine, and put in my latest Netflix DVD.  Its become a very relaxing exercise, methodically folding and piling up this and that, and if the movie’s good enough, the laundry’s folded before I know it.  (Putting it away, that’s a whole different kind of chore and I detest it, but that’s sort of beside the point.)

Last night I had a mountain of laundry to fold and no movie to watch, so I channel flipped until I noticed Discovery Health was airing a program about bipolar children.

I wasn’t able to catch all of it as I was also managing baths at the time, but I did catch a fairly good portion of it.  Enough to make me feel both sad and lucky all at the same time.  Once again, I felt part of a club I have no desire to be in.

When my daughter was first diagnosed, one professional suggested I check out the CABF mailing lists.  I did, for a week or two, then I funneled the subscriptions to a folder to read later, and eventually unsubscribed.  Its not that there isn’t value in connecting with parents of other bipolar kids – they are often the only people who understand what life can be like when things are really at their worst for families like ours.  Its that some of the outcomes were so depressing for me to read I practially lost the will to live just reading the emails.  Children the same age as mine in residential treatment.  Children threatening to kill their siblings.  Suicidal nine-year-olds.  Its heartbreaking, and as I was trying to wade through the daily grind of diagnosis and treatment, it just wasn’t helping me.  I needed to be able to envision a positive future for my daughter.  Even though I know that all of these issues and more are possible, I don’t believe its useful to dwell on the worst-case scenario.  Be aware of it, yes, think of how you might handle it if it arises in the same way you do fire drills so that when the house is burning you don’t forget how you’re getting out.  But to immerse myself daily in the pain and anguish of parents who themselves felt no hope left me feeling hopeless too.   My energy was required by my child and her needs, and I couldn’t find the words to offer them support or to even explain my own story and what we were going through. 

Last night, I expected that the show I was about to watch would be much of the same.  In some ways, it was – the little boy they featured in the first vignette was working on entering his sixth hospitalization, at the age of nine.  NINE.  In case that doesn’t shake you up, let me repeat it:  HE IS NINE YEARS OLD AND SINCE HE WAS DIAGNOSED FOUR YEARS AGO HE HAS BEEN HOSPITALIZED SIX TIMES.  That’s appalling.  The next story was a little more hopeful, a bright and articulate girl, talking about how things were for her when she was younger.  And they played a tape of her mid-rage, she was maybe three or four in the video.   I had to catch my breath – the sound she was making, sort of a mix between grunt, yell, growl – was exactly the sound A makes when she rages. I have never heard another child make that same sound.  Then her mother talked about how she was afraid to lose her job because she was getting called every day to get her daughter from daycare because she was having rages, and I just laughed and cried at the same time.  I felt like I could be her in-real-life BEST FRIEND, because I so remember those days.  The weeks where I had to leave partway through the day more days than I made it to five.  The fear that my employer was going to lose patience with me and find another employee with “normal” kids.  I got exactly what she dealt with and I know if I sat down and had coffee with her, our parenting challenges would seem very much the same.

What made watching this girl on the TV different and better was that I could see how much improved she was from her preschool years, and I see the same thing in my daughter.  I know it has been a struggle, and I am not living in denial that we likely have a great deal of challenge ahead of us as puberty starts messing with her body’s metabolic abilities and throwing her medications out of whack.  I know that there very well may be times in the future where we will struggle mightily.  But I look at her now, and as I listen to this other little girl, a few years older than my own, I feel really and truly hopeful.   This little girl on the TV, this little boy, they have wonderful parents.  Smart, caring, lovely parents, people who are keeping their backbone straight while they cope and work to do the very best they can for their child.

Even when the outlook is mixed, I have faith that those children will do the best they possibly can because their parents are engaged, and they were engaged early.  Before we reached the point where A could start recognizing and taking responsibility for her own behavior (and she does, oh God, she really does, its incredible to watch right now), way before that we, J and I, we engaged.  We sought medical interventions.  We did (and do) therapy.  We pay attention to school and we talk to her educators.    Even now, living apart, we communicate about how she is doing.  Issues of concern are raised and discussed.  Its crucial, this part of parenting her.  There’s no doubt in my mind that if we did not do these things that our daughter would be nowhere near  where she is today.

The other thing we did was to not assume the doctors know everything.  Pediatric Bipolar is still in the discovery stages.  Symptoms present far differently than in adults and there's still so much to be learned.  Ultimately, I know my child better than any doctor, therapist or psychiatrist, especially if this professional happens to be issuing instructions to us after knowing my child for only the half hour we've been in their office.  I know my child better than anyone else, and I feel most comfortable working with medical people who get that.  I appreciate my input being treated with respect and acknowledgment.  Its fine if we disagree, so long as we all remember that final decisions rest with me and with her father.  Never EVER be afraid to disagree with your child's caregivers or to seek second or even third opinions. 

Read everything you can find.  More people need to write books about pediatric bipolar, because it seems I've run out of any new options on Amazon.  Amazon must be looking desperately for new authors, because I think they paid an entire year's salary after my bipolar book shopping spree.

Don't rule out medication.  We don't medicate so that she will be more manageable for us, although that's certainly a side benefit.  We medicate because she is happier, she functions better, she is more capable when she is medicated. 

Whether or not a parent decides to medicate, the goal is to help your child live the best life that they possibly can.  Of course this might not resemble what life looks life for “normal” kids, but that’s not the goal.  My daughter is uniquely herself, and her issues make it more than inadvisable for me to compare her progress against children who do not share her illness.  I don’t even think I can measure her against other bipolar kids, because this disease has such varying levels of acuity that it would be impossible to determine what other kid might be exactly like her.  I can only measure her against what I know of her, about her.  And I see that she is shining with a radiance I never knew she could display.  She is mostly happy.  She has her off days, when her pendulum swings her toward the low end of the spectrum.  She might be crabby, fight with her brother, talk back when asked to do a simple task.  But where a year or more ago these small incidents might have turned into tantrums or full-blown rages, now they are minor moments of disconnection and perturbation in the backdrop of an otherwise sunlit day. 

I want to hold onto these moments with both hands, never let them go.  Not let the inevitable slip of time and tide move us past these golden moments into the uncertain waters of the future.  And I know that I cannot.  What I can do is have faith in what he have done so far, what SHE has done, and trust that we will continue, as we have, striving to do better. 

 

How to get more sleep

1.  Put the kids to bed early later than usual at midnight.

2.  Have your last glass of wine no later than 7 pm right before bed.

3.  Make your bed your personal space, only for sleeping Eat in bed, read in bed, drink in bed, watch movies and talk on the phone.

4.  Eliminate unnecessary noises Let three large dogs (combined total weight of 215 pounds) sleep with you.  Or rather, wrestle, lick themselves, snore, fart and shed while laying on your bed.

5.  Meditate quietly with your eyes closed Periodically threaten your children with death when they are still whispering and talking across the hall at two am.

6.  Its best to sleep on your back on your left side, then your right side, then your left side, then your back, then your right side.  Rotate every half hour.

7.  Train your body to sleep through the need to go potty get up every half hour (or when you change positions) to pee.

8.  Television should never be watched in bed left on all night so the flickering lights and the muted sound make you think there's someone else in your room. 

9.  Leave your bedroom door closed open so the cats can come in periodically and taunt the new dog.  Then close it in the middle of the night so that they get mad at you and start clawing at the handle.

10.  Get a pet sitter and a babysitter and get a hotel room.

Tonight?  I'm going with option #10.  See you in Portland Charles & Julie!  You don't care if I just sleep the whole time, right?

Miscellany

I'm bummed because it seems not many hits on the blog for yesterday's post on help for Haiti, even though I FB'd AND twittered it.  I hope its just because people were too busy looking up their own channels of donating or doing something to come here and read my blog.  Its hard to imagine being worried about the ordinary minutiae of life when it seems that hundreds of thousands of people are trapped, injured or dying half a world a way.  It certainly puts things into perspective.

Personally, I could use a little perspective, since this week I've really felt up to my ass in alligators.  Or up to my caboose in crocodiles. Whichever metaphor works for ya.  Work has been a trial, and I often think I need a daily refresher in corporate politics.  I love my job, I really do.  I love my company and I love the people I work with.  I'm very fortunate in this economy to have what I have.  But even the best workplaces come with quicksand and politics and people who do things you don't like.  I've had my nose out of joint all week about something, and  I really just need to get over it and move on.  Monday I seriously felt like punching someone in the face.  I dont' get that way at work too often, and when I do it is not pretty.  I practically have to lock my office door and not answer the phone, otherwise I risk saying something really bad to someone. 

Top that off with the kids and/or dogs keeping me up almost every night this week, I've devolved into a shambling, cross-eyed shadow of my former self.  I've become so absolutely inane that yesterday when I heard what Rush Limbaugh and Pat Robertson said about Haiti not only did I lose my temper, but I lost the ability to even TYPE.  I started to write something about it last night and the keyboard was all 87jk7hjjkoip*&9uiohjHUYU.  ZJH897hjaghadf.  38or7uzgknjvxjhauio;hgnlkjlKJL:J:HHH:OIIUUJ. 

See?  Inanity.

I don't even know if I can adequately put into words what an assbag douchenozzle I think Rush is.  That man has made millions off of riling up stupid people with stupid opinions.  He's not THAT ntelligent, he doesn't personally adhere to the values he holds up for the rest of the world, but I mostly dislike him because I think he's a bully.  There is always room in any government for opposition to the current status quo. That opposition is right and it is necessary because it helps keep things in balance.  It gives the politicians a gut check, and I'm all for outstanding reporting and fact-finding to help keep our government honest, no matter what party is running the show.  But outright lies and stories that are only meant to widen the difference between the citizens of this country get us absolutely nowhere.  Nowhere. 

I don't even want to talk about how big a difference, RUSH, there is between waiting three days to make commentary on a terrorist attack where no one was even hurt (well, perhaps the would-be attacker singed his testicles a little bit, but come ON) and getting the word right out there while hundreds of thousands of men, women and CHILDREN FOR FUCK'S SAKE are dying, injured, trapped.  Its like discussing the salient differences between peanut butter and oh, I don't know, CARROTS.  And as for Pat Robertson?  Does anybody even WATCH the 700 club anymore?  Apparently they must, since his idiocy made the news.  Either that or someone suffering from terrible insomnia was sitting on the couch flipping channels, they happened upon the Good Mr. Robertson talking about Haiti and thought "Oh, good, he's going to tell me where I can send some donations, I'll stop and listen!" and instead got an earful of complete and utter batshit idiocy.

See, I start to think about it and I'm all adfkjfdal;aerito;knj.uoit548u904tq09ujkcl and I have to keep backtracking to retype the words I've completely misspelled because I WAS SO FURIOUS I COULDN'T EVEN TYPE.  JJujutg89IOJ789t

45qtagjdas890tj.

So there.

People, PLEASE.  Help out our friends in Haiti.