I’m not gonna lie.  I am writing this one a day ahead so I can hit publish in the morning before I head out of town for a night.

So if it feels like I’m phoning it in, well, I am.  You got me.

Here’s my summer reading list.  I’m too tired to link it up to Amazon, so you’ll have to copy/paste.  Sorry.  I said I was phoning it in.

The Guernsay Literary and Potato Peel Pie Society – best book I read all summer.  It is the post WWII tale of a writer who discovers the incredible story of the residents of the British island of Guernsay during the occupation.  Get it.  Read it.  Now.

The End of the Affair – another post WWII story, this one of the affair between a man and woman and the effect it has on both of them spiritually.  It was somewhat tedious, but I liked it.

The Wind-Up Bird Chronicle – translated into English from Japanese; a 1980’s-era story of a man who is unemployed and the strange characters he encounters day to day.  This book was too…ethereal? for me.  It is described as “dream-like” but that translated into disconnected and unrealistic to me.  There was value in some of the lessons he learns, but I couldn’t make it to the end.

Gap Creek – pioneer-era story of a girl’s journey to womanhood through various trials during the early years of her marriage. Loved it.

That’s it for my summer.  The list seems short, doesn’t it?  Ah well, I’ve had a few other things on my plate.  I am currently reading The Group.  This book was given a cameo on Mad Men recently, so I knew I had to run right out and get it.  It was written in 1963 about a group of Vassar grads making their way in the world during the Great Depression.  I’m about halfway through and I’m really enjoying it.  It’s surprisingly provacative when one considers the publishing date.  I’ll be sure to give a full report when I’m finished.

Sweet Pea and I are making our way through the Nancy Drew series.  I think we’ve read 6 or 7 so far.  I’m going to write an entire blog about the world according to Nancy Drew but in the meantime suffice it to say things have changed since those innocent days of sleuthing in River Heights.

Happy Reading!!

]]> http://kathrynsmoore.wordpress.com/2009/11/14/what-ive-been-reading-lately/feed/ 2 kathrynsmoore http://kathrynsmoore.wordpress.com/2009/11/12/please-understand-that-she-is-not-herself/ http://kathrynsmoore.wordpress.com/2009/11/12/please-understand-that-she-is-not-herself/#comments Fri, 13 Nov 2009 04:37:15 +0000 kathrynsmoore http://kathrynsmoore.wordpress.com/?p=783 ]]>

One of God’s greatest gifts to me in this journey is the friends He has given me who understand my trials with Sweet Pea.  I have three close friends who have children with issues similar to Sweet Pea’s.  So similar, in fact, we often comment that these girls could all be sisters.

Of these three phenomenal ladies, one is a recent reconnection.   We haven’t seen each other since high school, but she found me on facebook, started reading my blog, and quickly contacted me about the incredible resemblances in our daughters.   We have become cheerleaders for each other, pushing ourselves through the tedious afternoons and difficult nights.  Sometimes we offer wisdom, and other times we just recommend the perfect cocktail, but at all times she gives me strength, and I hope I do the same for her.

One of the things she and I talk about the most is the judgment we perceive from those around us.  The looks at school, the store, the gym, the neighborhood.  Mental illness is an “invisible disability”.  You would never look at a picture of our beautiful children and suspect there was a problem.  But the sad truth is these children are sick.  Their brains don’t work like everyone else’s; the chemicals are imbalanced, the neurons misfire and all hell breaks loose. 

Another of these amazing ladies recently gave me a selection to read from a Miss Manners book she had borrowed from the library entitled Miss Manners’ Basic Training:  The Right Thing To Say.  (Don’t be scared – this isn’t one of those “your kid needs manners” stories.)  The section was from the chapter entitled Covering for Others.   The author’s intent is to address issues with an elderly person who has dementia, Alzheimer’s, etc., but my friend suggested it applied to our children as well.  I am going to quote directly because I think it’s the most effective (and also I’m too tired to paraphrase):

Anyone close to a person with such a problem is going to spend a lot of time apologizing…The key phrases are “She doesn’t really mean it,” “Please understand that she is not herself,”…”It’s not that you did anything – it’s just the way she is now.” 

The apologies made to oneself (the caretaker)  – “I know she doesn’t mean it”…”It’s not really her speaking” – are the hardest to accept.

Even as the mother of a child with an invisible disability it can be hard for me to remember that this isn’t her fault.  She isn’t doing it on purpose.  If she could be “normal”, she would.  I know she would rather be calm and happy than fractured and raging.  It’s easy to blame her though.  It’s so easy to say “if she would just…” and then fill in the blank with all the million simple things she could do to change her situation.  But that’s the point, isn’t it?  She can’t change it because her brain doesn’t always function like it should.   It’s more than just ADHD. 

My child has mental illness.

Please understand that she is not herself.

Sweet Pea hates homework.  Despises it.  Loathes it.  I encourage her, cheer her, reward her, help her, but she still hates it.  I tell her not to procrastinate.  Let’s get it done!  I say.  Then we can do other things that are fun!!

Dear Pot, meet Kettle, aka Funny Girl. 

I have homework for our therapy tomorrow and I haven’t even started it.  I’ve thought about it, but I haven’t done it.  Hubs called today to confirm the assignment.  He’s done.  I’m not.  Because I’m a procrastinator.  The worst kind of procrastinator.  I’d be happy to do it in the waiting room tomorrow morning. 

BUT, since writing is a confession of sin, I figured I would confess it and then own it.  So, I admit it.  I put things off.  And now I’m going to do my homework, right here in front of God and everyone. 

The assignment:  Write your house rules, noting which ones are negotiable and which are non-negotiable.  Then write positive and negative consequences that you currently use and whether or not they are effective. 

Here goes.

Any minute now I’m going to start typing.

I’m getting there…

UUUUGGGHHHHHHHH!!!!

Okay.  The House Rules:

1.  Safety First.  Stay in the house unless you have permission to go out.  No hitting, kicking, biting, etc.  No throwing items which can break things.  You may not hurt yourself or others.  NON-NEGOTIABLE.

2.  Take Medicine when it is given.  NON-NEGOTIABLE.

3.  Wear Hearing Aids to school.  NON-NEGOTIABLE.

4.  Do your homework each afternoon.  I am here to help you.  If we get it done then you can play.  If you don’t get it done, you do not get screen privileges or friend time.  Negotiable.

5.  Speak with Respect to mom, dad, and friends.   Speak calmly and we will listen.  If you need to scream, go in your room and close the door.  (Unfortunately negotiable, as there are plenty of times where we are all yelling at each other.)  If you need help with a friend I will gladly assist. 

6.  Respect other people’s property.  If something is not yours, please do not touch it.  This includes mom’s purse, dad’s wallet, mom’s phone, etc.  If you need something that is not yours, please ask.  Negotiable.

7. Please Obey our instructions.   We don’t ask much, so when we ask you to do something, we need you to do it.  We all have responsibilities that we don’t like, but we have to do them.  If you feel that an instruction is unfair or if there is a reason why you can’t do it right then, calmly ask if we can discuss it.  If you ask calmly, we will say yes.  We want to discuss, not argue.  If you argue we will ask you to go to your room until you are ready to discuss instead of argue.  Negotiable.

Positive Reinforcers: 

Earning something specific and tangible works best.  (ex:  iTunes gift card, My Meeba, webkinz, etc.)

Earning a privilege can work but can also backfire (ex:  sleepover with friend but then sleepover goes bad)

Negative Reinforcers (Consequences): 

 No screens (I think this is harder on us to enforce than it is on her to withstand)

No outside playtime (Hard b/c lately no one is available to play anyway)

“Grounded” – never works; too broad

Spanking – never works; only increases the behavior

Safe hold – necessary but doesn’t work

I may come back to this later tonight for some editing.  We’ll let it set for a bit and see how I feel about it.  Anyway, it’s DONE.   (Editor’s note:  I came back and added #6 after an oh-so-fun struggle over my iphone.  Geez.)

Now I can go do something fun!!

A girl’s gotta do what a girl’s gotta do, and sometimes, a girl’s gotta go shopping.

Especially if said girl will be in Manhattan in 22 DAYS (!!!) and has an obsession with being fashionable every moment that her feet are on the ground in that glorious city. 

She might need some new jeans…

And a new top…

(Don’t worry Mom, I’ll be wearing a nice warm coat over it!)

She’ll probably have to have some slouch boots for daytime…

And high-heeled boots for night…

And untold other accoutrements that every chic girl needs to see the City in style.

A friend of mine wrote today that writing is a confession of sin.  Well, today I must confess that I tend to overpack, especially for New York.  But not this year.  This year I’m turning over a new leaf.  ONE COAT.  That’s it.  It’s charcoal grey, so everything I’m bringing has to go with gray.  No browns.  No brown boots, no brown skullcaps, nada.  Solamente shades of greys, blacks, purples, blues, greens, fuschias, etc.  It doesn’t seem limiting on paper (er..screen) but I assure you it is.  This is truly monumental for me, and I’m bound and determined to make it happen.  Period.  That’s it.

Which is why I’m not showing you the adorable yellow sweater I picked up today, or my cool lace-up brown boots, or my orange STOPTHEMADNESS!!!  No brown.

Just grey.

Funny, my mood is grey too.  But not for long…

Can you hear it?  Ba-ba-badadadadah! Start spreading the news!!!

***Important disclaimer for my Hubs, who I’m quite sure is hyperventilating by this point.  All of the above items were purchased ON SALE at rock bottom prices.  There’s no need for panic.  Put the phone down.  No really, put it down.  You know you love me…don’t even try to deny it.

My favorite song in A Chorus Line is At the Ballet.  Three girls sing about the various difficulties in their lives, then each describes how her “safe place” was ballet class.  No matter what was going on outside, everything is beautiful at the ballet.

That’s how I feel about theater.

I was in an extremely intense rehearsal process (read:  six days a week) when all hell broke loose with Sweet Pea recently.  I told my director, but no one else.  I needed to NOT have to answer questions.  I wanted to walk in the door and just do my job; focus on something completely different. 

There is something about the smell of the musty theater that sucks me in.  I leave the fresh air of the outdoors and my eyes adjust to the dark light.  I drop my bags and breathe…ahead of me lies two hours of hard work, but I am only responsible for myself, and there’s freedom in that.  I hoist myself onto the jagged stage.  As I stretch I think about all the other performers who have worked on this stage…what were they thinking and feeling…what did they leave behind…

The director molds me like clay.  Sometimes with gentle pushes, other times with firm twists and punches.  It can hurt.  I am a perfectionist; I want it right, and I’m not always patient in the process.  I fight back tears when I’ve tried it over and over and still can’t get it the way she wants it. 

Sing it again, say it again, do it again. 

Again. 

AGAIN!

Louder, please. 

Softer. 

Bigger! 

More subtle. 

Faster there. 

Slow that down.

You’re thinking too much!

Let go.

And just when I think I’m never going to get it, she looks at me and smiles.  You’ve got it.  That’s it.  It’s there.  Now don’t change a thing.

There is something about having someone else in control, and being someone else at the same time, that takes the pressure of my life off my shoulders for a few hours.  Granted, there’s a new pressure, but it’s pleasurable even in its pain.  With every line that I say, every note that I sing, every dance step, every pratfall, I leave the realities of my life behind. 

Maybe I’m running away, but I won’t apologize for it. 

Because at the end of every night I take off my dance shoes and stuff them in my bag, gather my script and all my notes, pick up my water, and head back out the door.  Away from the clarity of the stuffy theater.  Back into the fresh air of my complicated life.

How about some pics from my recent show?? 

Judy Denmark.  The talentless mother of a talented kid, who is very afraid for her daughter to be in show business.  (Note:  I actually cut my hair for the show!!  I wasn’t having a good hair day on the matinee these pics were taken, but I usually had a bouffant/flip for the first act.  You can see it better in the pic above than in the one below.  Also, that is a vintage silk shantung dress that was so fragile it ripped every night during a fall sequence at the end of the first act.  The costumer patched it over and over just to get it through the run.  It was beautiful, and I completely destroyed it with my antics and sweat.)

Long (and somewhat complicated) story short:  Judy’s 8 year old daughter, Tina,  is cast as the understudy in Pippi in Tahiti, The Musical and kills the lead because she so desperately wants to play Pippi.  She is found guilty and sent to the Asylum for the Criminally Talented.  Meanwhile, Judy assumes her former identity, that of Ginger DelMarco, and pursues her career on Broadway, earning two Tony’s and a very ugly personality.  Tina eventually returns and blames her mother for taking HER career.  In the end, Tina is the only one left standing.  It’s (obviously) a dark comedy. 

Ginger DelMarco, being interviewed by a reporter.

Like I said…UGLY.

The challenges in this show were immense but terribly fun.  Judy spoke (and sang) with a high, breathy voice and Ginger in a low, gruff voice.  Judy walked with her butt out, hands in, and feet together.  Ginger led with her hips, always stood at angles, and used her hands wildly.  Judy made me tired…Ginger flat wore me out. 

My brother told me the first weekend to “go kick the show’s ass”…I think I did, but it certainly turned around and kicked me back for the next twelve hours.  This was BY FAR the hardest show I’ve done.  It was mentally, emotionally, vocally, and physically exhausting. 

And I loved every minute of it.

I am an optimist, but I am living with alot of fear right now.  When I boil it all down, it’s fear of failure.  Fear that we have failed her, which makes us failures ourselves.  Fear that she will be a failure.

It is so hard for me to be hopeful about our future.  The research is grim.  Teens with ADHD are 2-4 times more likely to have a car accident, twice as likely to have abused alcohol in the last six months, and three times more likely to abuse drugs other than marijuana.  They are 10 times more likely to get pregnant, and 400% more likely to contract an STD. 

You can see why I’m scared.

Compounding the issue, Sweet Pea has a lot more going on than just ADHD.  She has a significant problem with mood regulation, meaning she reacts to and exhibits her emotions inppropriately.  She has also developed almost paralyzing anxiety (which looks like defiance…go figure).  She does not have many friends, because 10 year olds aren’t likely to be oh-so-patient with a kid who is this different.

And then there’s our marriage.  Hubs and I are under immense pressure at home.  The air is toxic and it is hard to breathe.  We are working daily to keep our relationship healthy but it is nearly impossible sometimes.  The research supports this:  Married couples with a child with ADHD are twice as likely to divorce by the time the child is 8 years old than couples who do not have a child with ADHD.  The stress Sweet Pea brings to our home is incalculable.  It’s also highly unpredictable, so disappointment often hits us when we least expect it.  We make a plan, it fails, we feel like failures, we get angry, we yell, we go to our corners and calm down until it starts again.

Those of you who know me and Hubs are probably thinking “but y’all are so great together…you know God has a plan for y’all…if anyone can make it, you can…”

Let me be clear.  It is my opinion that no matter how perfect, no matter how prepared, no matter how supported, no matter how faithful, no matter whatever, we are not equipped to withstand this pressure.  It is a daily battle so painful I can hardly stand it.  I have tied my rope and I’m hanging on, but there’s not much that is helping at this point.  It is like having a child with cancer and the chemo isn’t working.  And then knowing that there’s no end, because the cancer isn’t going to kill her, it’s just going to ravage her life.  Yes, there are moments of hope, moments when the meds seem to be working, but it always rears its ugly head again.  And again.  And again.

I realize that research isn’t everything, and that she could defy the odds.  I have said it before and I’ll say it again.  WHEN God decides to work a miracle, she will get better.  I believe He can do it, and for whatever reason He is choosing not to.  I’m mad, and He knows it.  I still trust Him.  He knows that too.

Until then, it’s back to the foxhole. 

*****************************************************************************************************************************

BTW, if you didn’t watch this clip yesterday, it perfectly describes my battle with fear right now.  The girl is portraying the fearful; the guy is her fear.  http://www.youtube.com/watch?v=po417XoP0O0

Rather than go into detail about our sleepover failure tonight, I’m choosing to focus on some fun things.  In the midst of all my craziness and anxiety and fear and loathing, here are some things that really do make me happy.  (This list is going to have to count as writing today; it’s the best I can do.)

Mad Men – If you’re not watching Mad Men, I INSIST that you go rent the first two seasons, then catch up on this season.  We’re just about to the final episode.  The acting is superb and the styling is perfection.  I’m seriously hooked.

So You Think You Can Dance – I’m new to this, but I love it.  If you’ve never watched it, here’s an example.  This is a contemporary dance portraying the fearful (played by the girl) trying to overcome her fear (the guy).  You only have to watch the first 1:45. http://www.youtube.com/watch?v=Bwu-YQ9ROpc&feature=fvw

New York City – my every-other-year girl’s trip to NYC is almost here.  I’m counting the days, making lists, obsessing over boots and scarves…I’ll definitely be writing more about this later in the month.

Corn Crack – One bag natural popcorn, one small bag of Fritos, one box of Corn Pops, and one bag of melted white chocolate chips.  Be careful.  We call it crack for a reason.

Sara Bareilles – faves are Gravity (live and studio versions), Between the Lines, and Undertow (only avail on youtube)

Christmas Music – It’s time!!!  Did y’all know Sting has a new winter album?  Sting-a-ling-a-ding-ding!!

Playing Free Cell on my iPhone – I’m so completely addicted. 

And…snuggling with Sweet Pea after a horrible evening.  She always comes back to me, and I to her.  May it always be so.

What makes you happy??

My friend Meg has challenged me to start writing again.  Apparently it’s National Blog Posting Month (NaBloPoMo) and the challenge is to write one post a day. 

Let me tell you how hard this is. 

I have started this particular post five times, and each time I write something I delete it.  I have so much to say and I can’t say any of it.

I am angry.  I’m hurting.  I’m scared.  Every day is so full of emotion that I’m numb. 

She is mine.

Mine forever.

But this isn’t what I signed up for. 

“Oh, you’re so incredible for adopting a child… It takes a special person to adopt…You’ll be wonderful parents…”

I am not a wonderful parent.  I am a parent who is just barely getting by each day.  She is in so much pain, and so are we.  It is literally tearing us apart.  I love her more than words can say, but my love isn’t enough right now.  She needs consistency and structure (but not too much) and WHERE is that happy medium??  We can’t find it.  She rebels against almost everything we say and do, but at night she wants to sleep curled up next to me because she can’t be alone. 

It’s not fair.  I’ve said it before, and I’ll say it again.  It’s NOT fair.  NO ONE should have to go through mental illness.  It is a horrible disease with a stigma so strong that I don’t feel like I can even talk about it. 

I can’t talk about it.

I want to, but I can’t.

I can’t write.

I go to sleep at night composing blogs, but when my fingers hit the keyboard they freeze.

It’s too painful, it’s a mess, it doesn’t make sense…it certainly doesn’t fit together neatly into one little blog.

Her brain is so sick.  And the new medicine isn’t working.  I lost count a long time ago of how many different meds we’ve tried.  Some don’t work at all, some work for a while and then quit working…this newest one threw her into a complete tailspin.  She’s up and down and all over the place -at home, at school… The psychiatrist said to stop the med and let it get out of her system before we start something new.  So that’s 48 hours of sheer torture.  No telling what she’s going through at school right now.  I stayed home today so that I could get bring her home if things got really bad.  So far so good, but there’s still an hour to go…

And the timing of all this couldn’t be worse.  I’m in rehearsal every evening, so hubs is on duty for the worst part of the day.  Bless his heart.  He’s hanging in there like a champ but the reality of her illness is taking its toll and I feel so guilty for leaving them.  I realize theater is my job, and we need the paycheck, but there’s not much comfort in that when I’m driving away each night.

I say a line in my play that keeps going through my mind:  “Exactly, Sylvia.  That’s not the life I want for my daughter.”

This isn’t the life I want for her. 

And yet there’s nothing I can do about it.