Get Lucky

A huge storm hit the Cities here.  Over 500,000 people were left without power including us, mature trees were downed, and basements were flooded.  Fortunately, our property didn’t sustain any significant damage aside from the inconvenience of having no power for almost 24 hours.  Some folks won’t have power until Wednesday.  Milly and Grace got a taste of what life is like without their beloved technological gadgets, and I will now be reminding them of this experience the next time they fall victim to summer ennui.

I left my husband to care for the restless natives yesterday morning because I had a date with a girlfriend! We were going shopping.  When she found out that we would likely have no power in the evening and possibly into Wednesday she invited us all over for dinner.  Everyone let out shouts of glee (my husband let out a sigh of relief) when I announced that dinner would be at her house.  As we waited at a stoplight, the new Daft Punk single began playing on the radio.

I really, really like Daft Punk which is odd because I’m not a fan of house music or electronica, but it matters not.  I like Daft Punk.  I might even LERVE them.  And their new album? ERMIGERD…Daft Punk collaborated with Nile Rodgers, a man who seems to have discovered the Fountain of Youth because he almost looks the same now as he did back in his Studio 54 days! What do you get when Daft Punk collaborates with Nile Rodgers? Hmmm…I do believe on American Bandstand the kids would say, “It’s got a good beat, Dick.  And I can dance to it.  I like it, Mr. Clark.”  Aaaw yeah, you can dance to it alright, and that’s just what we did in the van yesterday.  Even my husband.  Except for Doireann who proclaimed that this song could not possibly be Daft Punk.  She’s usually the naysayer in the family.  Grace did something that looked like the Funky Chicken.  Eadaoin bobbed her head and bounced her shoulders.  Milly looked like she was having a seizure, and my husband did the White Man’s Overbite.  Me? I just sang along and pined away for a dance floor.  As I was singing I realized I was singing about “getting some” and “getting lucky”.  I was essentially singing the Player’s Mantra:

She’s up all night ’til the sun
I’m up all night to get some
She’s up all night for good fun
I’m up all night to get lucky

I wondered if anyone else was paying attention to the lyrics, and then I turned around and looked at my kids.  Doireann was frowning while everyone else was getting down in the back of the van.  I shrugged and remembered that I used to sing along to all the songs from “Grease”.  I thought that movie was the best movie ever made.  I knew every word to every song.  I pretended to be Olivia Newton-John while spending hours alone in my room singing and dancing.  I loudly and proudly sang:

You are supreme, the chicks’ll cream, for grease lightning

and

You know that I ain’t bragging she’s a real pussy wagon 
Grease lightning

It wasn’t until I was a senior in high school watching “Grease” at a friend’s house when I understood exactly what I had missed all those years ago.  I gasped in the middle of John Travolta’s gyrations and squeaked, “He just sang that chicks would cream!!! OHMIGOD! I used to sing that when I was little! That is so gross!!!! I can’t believe…Did he just say a ‘pussy wagon’? Did he really? I’m in shock.”  Because of this very disturbing memory, I now know that my kids aren’t going to understand what “getting some” and “getting lucky” mean.  I turned around and continued dancing in the car, counting our neighborhood lucky that our power was restored just as we walked out the door to go to dinner at my friend’s.  Grace had a good day yesterday.  No one on my street lost a tree or sustained serious damage from the storm, and we got to sleep in an air-conditioned house.

Yeah, we got lucky indeed.

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A Grand Day Out

Not all days are bad around here.  We have good days.  Like yesterday.

Milly was following me around all morning begging to go swimming, but it’s been a bit chilly here.  Any outdoor venue would have cold water.  She might not care, but I won’t be swimming in cold water.  I grew up on the Gulf of Mexico.  I don’t do cold water, and the girls would inevitably drag me into whatever swimming fun they were enjoying.  Grace has managed to achieve the nagging skills of my Norwegian grandmother.  She is tenacious.  It’s like being pecked to death by a duck.

I couldn’t take them out swimming yesterday so I suggested an outing to a neighborhood just a few miles from our house.  It has a sort of Main Street lined with shops, a gourmet ice cream shop, an independent children’s bookstore, and even a children’s toy store! For the adults, there are boutiques, restaurants, and a few cafés.  This wonderful spot is nestled in a gorgeous neighborhood lined with beautifully maintained American Foursquares, Victorians, and mature trees.  It reminds me just a bit of the Southern neighborhoods I knew as a child with their mossy Live Oaks and sprawling porches.  Milly and Grace reluctantly agreed that my suggestion was a suitable consolation.

First order of business? The toy store, of course! There was a sidewalk sale, too! The weather was finally warm and sunny, and it was such a pleasure to be outside.  Next up: ICE CREAM! This particular ice cream shop is local and makes their own flavors.  One also doesn’t know what flavors will be offered on a day-to-day basis.  I am absolutely enamored of a certain chocolate ice cream flavor with all sorts of chocolate pieces and salted caramel thrown in, but, alas, it was not on the menu yesterday.  We all had to be flexible and try something new.  I know, life is hard…sigh…

Grace and Milly compromised and actually let me go into a boutique!! GASP! They fussed quietly until they looked around a bit. Their X chromosomes were activated by the scented candles, scarves, and Anne Taintor memo pads.  Suddenly, they were oohing and aahing over the adorable earrings and retro toys: “Mom, look at this! Isn’t this cute?” It warmed my heart.  Of course, I had to buy something! This is now in my possession:

Teatanic Tea Infuser

I needed another tea infuser, and this fit the bill.

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The beloved bookstore’s reading nook

Finally, we made our way to the celebrated children’s bookstore.  This bookstore is unusual in that it is the home to many animals including one very bold hen.  Historically, many chickens have called this bookstore “home”.  I’m not sure why the proprietor of this store has chosen to keep chickens here specifically since they also keep ferrets (an animal that would surely eat the chickens)…and chinchillas…and doves…and a very large tarantula…and four Manx cats…and I’m leaving other members of the menagerie out, but you get the picture.  The chickens have always roamed freely throughout the store like they owned the joint as have the cats.  I’ve always wondered how the two species have managed to live together harmoniously.  We’ve been visiting this store since Doireann was a toddler, and Eadaoin has always loved this place except for one thing–the fancy chickens.  That’s what she used to call the chickens when she was about 2 years-old.  I would lead her into the store through the little purple door designed especially for children.  Her eyes would light up and off she would run until she saw “the fancy chicken”.  She would then shriek and run around the store screaming, “The fancy chicken! The fancy chicken!”  The staff would have to find the fluffy, white chicken named Elvis and put HER in her cage.  Yes, Elvis was a girl, and she was indeed fancy.  She was also a sweet hen.  She never pecked or chased anyone.  I grew to like her very much.

I cannot say the same for Bollina, the new hen stomping around the premises.  Bollina knows no fear.  She stares young children in the face.  When they attempt to chase her, she stands her ground and lets out a squawk.  This bird means business.  She’s intimidating for such a small creature.  Admittedly, I’m a little scared of chickens after a run-in with a rebellious rooster on my grandfather’s family farm as a child so I tend to steer clear of them desiring to give them a wide berth.  Yesterday, however, Bollina set her sights on my toes…

We were standing in the fantasy section next to a group of adults when I heard a guttural chicken squawk.  I looked around and saw the hen strutting about ten feet away from me.  Milly grabbed my arm to pull me away.  “She’s fine.  She’s just walking around,” I said attempting to reassure her.  The hen promptly noticed the twinkle of my toe ring and made a beeline for my feet, her head lowering, preparing to peck.  I actually panicked.  I stumbled backward and made some weird noise as I attempted to escape the hen who was now almost running toward me.  The other adults had begun to laugh because, I’ll admit it, the situation was funny.  As I turned to quickly walk away, I hit my wrist on a shelf, cried out, stumbled again, stepped on my own foot, and gave the adults another reason to laugh at me.  The chicken was still in hot pursuit, and I had begun to run.  Milly was way ahead of me. “Mama! She’s after you! You have to get away from that mean chicken!”

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Bollina the Bold Chicken

In a few seconds, I came to my senses.  What was I doing running in a children’s bookstore? Running away from a chicken? Alright, so she reminded me of a tiny Velociraptor capable of eviscerating me on the spot, or, at least, eating my toe; but, I’m an adult.  I needed to get a grip.    I picked a spot near the toddler books and sat down.  Strangely enough, Bollina the Bold Hen strutted right up to me and looked at me.  Milly was scared and suspicious.  “Mama, this is a bad idea.  Get away from her!” I used my gentlest voice and asked Bollina why she insisted on pecking at my toes.  That chicken listened intently, cocking her head just like my Australian Shepherd used to do when I said a word she recognized.  She made little cooing noises as I spoke to her.  She approached me, pecked me gently on the knees, checked out my purse, and, finally, curled up next my knees, fluffed herself, and closed her eyes.  She let me pet her fluffy rump, and we communed awhile, just the two of us.  Milly observed my Chicken Whispering and decided to sit down next to me.  “Maybe she’s not so bad.  Maybe she’ll sit next to me if I talk softly to her.”  Grace was dubious.  “I don’t trust that chicken,” she said from a distance.

Sadly, Grace’s instincts were right.  As soon as I made an attempt to stand, Bollina began pecking wildly at my knees.  Grace and Milly decided that it was time to leave all this wild rumpus behind.  Bollina stalked all three of us to the exit, but we made it out the purple door toes intact although Grace and Milly argued about who would go out the little purple door first: “No, I was gonna go out the door! I wanna open the door myself!”

wild-rumpus-books

Around here, we really do have to take it one day at a time.  One hour even.  When we have a time of stability, it feels miraculous.  Yesterday was relatively normal for our family even counting Bollina the Bold Chicken.  It seems that someone is usually chasing someone, distracted by something shiny, or squawking.  No wonder the chicken fell asleep sitting next to Milly and me.  She was right at home.  You know what? I don’t mind that at all.

photo

Springtime Grace. This is such a hopeful image to me. Look for beauty in the quotidian. It’s there…

Odds and Ends

First things first, I just drank what has to be the most disgusting smoothie on record.  I’ve been stressed a fair bit lately so I’m trying to increase my nutrient intake.  A kale smoothie sounded like just the thing.  I’m really regretting it now.  One word: NASTY.

We’ve had a lot of activity around here lately now that school is out.  I posted recently that Dr. Awesome was concerned that Grace was showing signs of some kind of neuromuscular problem largely because Grace has trouble swallowing.  She also has a tendency to slur her words.  On top of that, Grace’s gait is, for lack of a better word, “wonky”.  Doireann says that Grace suffers from “duck butt”.  What she’s trying to say is that Grace’s back is arched causing her posterior to extend outward much like a duck’s rump.  So, when she walks her rear end bounces up and down a bit like a duck’s.  This overextension of her spine seems to cause her to keep her legs locked so that she walks from her knees rather than her hips causing her to slap her feet down when she walks.  So, really, she walks a bit like a duck combined with the character of ‘Shaggy’ from “Scooby-Doo”.  It’s positively weird.

I did some research as to what might cause neuropsychiatric symptoms, trouble swallowing, and neuromuscular problems, and, lo, I found this: Wilson Disease.  I was intrigued.  I wondered if the doctors overseeing Grace’s care at any of the facilities Grace had ever stayed in had tested her for Wilson Disease.  I also remembered that a pediatrician at one of the inpatient facilities where Grace stayed last August approached me regarding some of Grace’s lab results.  Her eosinophils were too high.  She strongly suggested that we change her diet.  Grace was already gluten-free, but she contended that casein in dairy products could cause mood disturbances in some children.  I have an ASD child, and the “mood-casein” link was not unknown to me; but, mood disorders and casein? That seemed a little extreme in my opinion.  I remarked that eosinophils were a marker of allergy; it was ragweed season.  Grace was allergic to ragweed.  She seemed very focused on the issue of casein and Grace’s mood.  Keeping the swallowing issue in mind, I found that there is such a thing as Eosinophilic Esophogitis.  I, therefore, asked Grace’s pediatrician to test Grace for Wilson Disease and EE so that we could rule out those two conditions which would allow us to know what steps to take next.  It was also another clarification.  When you have a young child with such a burdensome diagnosis such as a schizophrenia spectrum disorder, people are always looking to explain the diagnosis away.  Sometimes there are other explanations like Wilson Disease.  In this case, however, all of Grace’s lab results were normal including her eosinophils which means that it was her allergy to ragweed which was most likely causing their elevation last August.

What are the next steps? A swallow study has to be scheduled.

Something else is also on the treatment menu: skills training.  What is skills training? Skills training teaches a person how to use what they know in the moment that they need it.  If you’ve ever gone to therapy or read a self-help book, then you’ve probably come across some kind of “how-to” advice:

  • When you begin to feel angry, here are five things you can do to control your temper.
  • When you begin to feel sad, here are three things to tell yourself so that you are not overwhelmed.
  • When you feel your anxiety begin to take over, here are the steps you need to take to stay in control.

Well, it all sounds so good when we’re calm and in our happy place.  Skills training represents that space between the rubber and the road.  A therapist hangs out in your home with you and intervenes when you begin to need those five steps and shows you how to use them in the moment.  Skills training is the implementation part of the process.  The field work, if you will.  It’s exactly what Grace needs.  Hell, I think we all need it.  Skills training is what stops you from telling your significant other that you hate the way they chew their food and, oh yeah, they’re clumsy in bed; it equips you to find your “thinking brain” when the heat is on rather than lashing out with your reptile brain.  I am looking forward to seeing how it will help Grace on a day-to-day basis.

In order to qualify for skills training, we had to suffer through yet another diagnostic assessment (DA) to ensure that it was a good fit for us.  Grace’s case manager recommended it for us, and we’ve been trying to set it up for a few months now.  A woman from the organization providing the services came to our home last week to complete the DA.  She was very nice, and the DA was easy.  We’ve done so many at this point, and I’d already emailed her a tome of documentation.  She just needed to fill in the blanks.  Aside from setting up a start date for Grace’s skills training, something extremely valuable came from this in-home visit.  This woman may have solved one of Grace’s on-going problems for me.

Grace struggles with a strange kind of meltdown.  When she’s faced with a decision that requires her to choose from many options, she usually becomes confused.  She then turns inward, begins saying awful things about herself, and then freefalls into some kind of anxiety or depression-driven cycle that manifests as mood lability mixed with weeping.  She will not be able to speak very much or even tell you what she needs.  It’s very hard to reach her when she’s like this.  This is often the precursor to a mixed state, and this is often when we have to break out the Seroquel (quetiapine) to sedate her.  This happened last week whilst we were out in a public space.  We had to cut our outing short, and I actually heard myself say, “Grace, we have to leave.  You’re scaring the normies.”  Not my finest parenting moment to be sure.  It was like she went from calm and docile to “One Flew Over the Cuckoo’s Next” in 0.65 seconds.  Eadaoin and Milly were with me.  It wasn’t a great afternoon.  What must we have looked like? It wasn’t pretty.

When I explained this dynamic to the woman doing Grace’s DA she listened carefully.  She then said:

“I could be mistaken, but this is what I think is happening.  I read Grace’s neuropsych report.  Usually, a person with such poor executive function and low working memory has a lower IQ.  In other words, they are usually low functioning.  But, Grace is high functioning except that her executive functioning is in the toilet.  In the case of a lower functioning person, if they were faced with decision making and found that they could not decide, then they might have a tantrum and move on.  Grace, however, is of above average intelligence.  She knows that she should be able to make decisions, but she can’t.  She knows that she should be able to function, plan, and remember.  So, in the moment, when she attempts to access her brain’s executive function and finds that she cannot, she becomes anxious.  She then begins to tell herself that she should be able to do it.  She gets stuck on that one thought.  Then, the depression begins to kick in with the negative thinking.  That’s when you lose her.”

This was a revelation to me.  I think that she’s right.  I asked her what I should do for her in those moments.  She said there was nothing I could do.  I should let her go.  Let her freefall and medicate her.  Skills training would work with her on this.  She would have to learn to compensate for her deficiencies as she matured.  She’s only 12.  Let us remember this.  This is hard stuff to master even for an adult.

So, that’s where we are.  In the meantime, Eadaoin decided to try cutting.  She carved a sad face on her thigh and then promptly told me about it.  I called her shrink.  I am working on making arrangements for in-home supports for her through the organization providing skills training for Grace.

My husband also decided that now is the right time to act like one of these:

douche

(credit: Cj de Silva)

We are working on it.  It’s taking time.  Learning to un-douche oneself is more of an art than a science it seems.  I am not enjoying myself.  Not one bit.  But…that’s a different blog post altogether, isn’t it?

You know what is enjoyable though? Watching Henry Cavill for almost two hours in “Man of Steel”.  Aaaaw yeah…

henry01

Decidedly NOT a douche.

Flarp!

A few nights ago,  after putting Grace and Milly to bed, I was sitting at the table reading the paper (Yes, I read the paper) while Eadaoin studied.  I noticed that she was playing with a fidget while finishing up.  In case you aren’t familiar with the term ‘fidget’ or ‘fidget toy’, a ‘fidget’ is essentially something that one plays with or uses to occupy one’s hands while engaging in something else.  Adults often doodle, use stress balls, or chew pen caps so that the part of their brains that requires occupying is satisfied.  Once that is achieved, the capacity to concentrate increases.  Children on the autism spectrum or who have ADHD, sensory processing disorders, learning disorders, and the like often use fidgets to aid in their concentration and stress management.  Both Grace and Milly rely on fidgets as coping skills.  I keep a “fidget box” full of surprise fidgets as part of a reward system, and both Grace and Milly think it’s the coolest thing ever.  Of course, I have to hunt high and low for new fidgets, but it’s fun.

So, there I was noticing that Eadaoin was playing with one of Grace’s fidgets, and then I heard a noise.  The fidget…farted.  “Eadaoin, what was that?”  She laughed uproariously.  “Mom, it’s the Flarp! It’s noise putty.  It makes noises.  See?”  And then she did it again.  She began to repeatedly shove her fingers into the container making this putty produce very realistic sounds; something on par with sounds I only hear emanating from the bathroom when my husband grabs his iPad and announces that his coffee has kicked in.  We girls then make it a habit to avoid the bathroom and hallway for at least ten minutes after he’s exited said bathroom due to what I feel might be hazardous waste contamination resulting in a need for the Silkwood Shower.  “Do you want to try?” Initially, I was repulsed.  Hell, no! The Flarp was so shiny and smelled strangely.  Then again, I was curious.

Flarp

What happened? Once I got started, I couldn’t stop.  I made the Flarp produce the grossest, nastiest noises.  My husband was cheering me on from the bedroom.  “Aaaaw yeah! That was awesome!”  Eadaoin nearly fell from her chair laughing so hard.  I giggled and groaned.  Even the ever-serious Doireann sneaked in to watch us.  She looked shocked.  “Oh my gosh…Mom! That is so gross!”  Yes.   Yes, it was.  But, you know what? Even she couldn’t resist the tractor beam-like attraction of the Flarp.  She, too, had to find out what unnerving, disgusting noise she could make Flarp produce.  Of course, Eadaoin and Doireann don’t often play nicely, and in a matter of moments they were threatening each other with the Flarp.  “I’ll put it in your hair!”….”I will cut you!”….”I wonder if it sticks to skin?”….”Back off of me! Back off of me now!” I had to step in and tell them to knock it off in my own way:

“Lower your weapons, ladies! Put down the Flarp! Holster your noise putty there, Tex! I see a tumbleweed blowin’ in from the West! I’m gonna turn the hose on you two if you don’t knock that off!”

My husband seemed to think our repartee was amusing, but he doesn’t know it’s normal for us.  He’s been gone too much, and when he’s here, he’s often not really listening.  There are better ways to dismantle conflict than threatening children with intimidation.

Flarp is a bit magical.  It has distracted Grace for a week now in her moments of stress and even distracted me for a a few minutes from thinking about how stressed I am about my current circumstances.  It’s got a weird name, a weird smell, a weird texture, and makes very weird noises.  I don’t know why “DO NOT EAT” is written directly on the container because, I can assure you, ingesting this stuff is not a temptation unless you enjoy eating your own snot.

I have a weird fantasy that I might attend a dinner party wherein many nouveau riche social climbers would attend.  I could sneak in and deposit numerous containers of Flarp throughout the venue.  Some curious soul would open up a container, and the Flarp would let loose a horrifyingly Flarpish noise.  The music would stop.  The guests would look around in disgust, and the innocent victim would cry out, “It wasn’t me, I promise! I was the Flarp!”  Hilarity would ensue.

I’ll admit it.  I have a certain person in mind to star in this scenario.  A few years ago I was invited out to lunch by a woman I hadn’t seen in a few years.  She wanted to have lunch at her country club which seemed okay.  I grew up in a deeply Southern “country club” neighborhood, and I ended up working at the country club in high school.  Working at a country club is very revealing.  There were only white people as far as the eye could see if you catch my meaning.  I hightailed it out of the neighborhood and state two days after I graduated and never looked back.  So, this foray into the country club culture was more annoying than anything else.  What I figured out is that I was on an audition of sorts.  She was sizing me up for “friendship” and future socializing “appointments”.  I found this to be completely unrelational and phony.  I decided to sabotage myself by simply being myself.  After having grown up amongst this type of personality, I know the rules.  One can be many things, but never be yourself.  Consequently, she never called me again.  Thankfully…So, imagining this woman “flarping” in public in view of all her country club friends gives me a strange Schadenfreude-like glee that makes me giggle.  For the record, I was never a Queen Bee or Mean Girl in high school.  I have no idea why my imagination has concocted this ridiculous scenario or why I’m blogging about it.  For some reason though, it’s become a visual earworm, and I snicker whenever I imagine it.

Life is just strange, and people are stranger.  This is why Flarp is necessary.  It’s silly, and silliness is important because life can be all too serious.

Empowered Relationship: Part II

I wanted to post this article because it’s simply one of the best I’ve ever read on intimacy in relationships.  After my last post, I thought this would be an appropriate follow-up.  It’s empowering, informational, and, admittedly, rather long.  So, read it in a few sittings if you must, but, by all means, read it.  I’ve read numerous articles and books on relational intimacy, and this ranks in the top 3.  I’ll tell you this: It really helped me acquire some new language around my own expectations, my thoughts and feelings, and how to discuss them in terms of conflict resolution with my husband.  The result? We had a great discussion as well as a bit of a breakthrough! So, read it!!!

Intimacy: The Art of Relationships

Resource: Intimacy: The Art of Relationships–How relationships are sabotaged by hidden expectationsLori H. Gordon, Psychology Today