Monthly Archives: August 2010

OPERATION SKINNY JEANS

John and I came upstairs after watching TV the other night and found a note hanging at eye-level in the kitchen doorway.

 

I laughed out loud and called into the other room to see if John had seen it.  “Yes,” he replied, “but I didn’t read it.”  I noticed Lily’s clever engineering, dangling the notebook at just the right height from the balcony above using fishing line.  Fishing line?  I didn’t even know we owned any fishing line.  I imagined Lily scurrying around quietly, carrying out her plan, while we thought she was asleep.  
Lily is always hatching some kind of strange but clever plan.  Sometimes, I’m not sure she consciously knows she’s planning something.  It’s like something inside her compels her to carry out these creative missions without any forethought.  She never tells us when one of her plans is underway, so then she gets frustrated if we unknowingly interrupt her or if say, Dad throws away the special stick she was saving to carve into a native American fishing spear, or we’ve moved (aka put away) the tape, glue, paper, pipe cleaners, etc. that she had planned to use for some masterpiece.
A FEW OTHER MISC. MYSTERIOUS PLANS
PURPLE ANKLES
Last summer, Lily kept complaining about growing pains.  One day, when I dropped her off at daycare, I noticed a flash of purple peeking out of her socks.  I called her back to the car and discovered that her ankles were wrapped with purple duct tape.  “It makes my legs feel better and makes me run faster,” she told me.  She probably kept that tape around her ankles for a week.
OLD SPICE
This summer, we went away for the weekend as a family.  The first night, when we laid down in the hotel room, I noticed that Lily had a little plastic makeup bag she kept opening and sniffing.  Weird. When I asked her what she was doing, her little sister told me that Lily was smelling what was inside the bag to remind her of home.  Lily wouldn’t tell me what was in the bag, but she said that it relaxed her.  OhhhKaaay.  Whatever it was, I knew that somehow she secretly scrambled around the house to prepare it before we left. The girl can barely remember to put on shoes before we leave the house, but she sure didn’t forget to mix up some homemade spices and put them in a makeup bag so she could sniff them in a hotel room.  I still don’t know exactly what was in the bag and I guess I don’t really want to know, but when we came home I did find an empty jar of mustard seed.
KITCHEN CONCOCTIONS
Many of Lily’s mysterious plans involve cinnamon, lemon and the kitchen. I had to put a ban on her concoctions for awhile because of the messes she left behind.  She’s definitely not a ‘by the book’ cook.  She dreams up crazy drinks and soups that are actually pretty delicious.  One night, she was especially excited to have us sample the dessert she had made. She coated Honey Bunches of Oats with melted chocolate chips, put the mixture inside a biscuit-cutter to form it, sprinkled it with kosher salt and put it in the freezer to set up.  It was really good!
BEAR CUB REPORTER
I came home from work this week and was greeted by Lily wearing a suit jacket and skirt and carrying a notebook and pen.  She told me that she was a newspaper reporter and wanted to interview me about the recent rash of bear visits in our neighborhood.  Later that night, she presented us with her newspaper article, which for a twice exceptional kid who has difficulty with writing because of her fine motor issues and Executive Function problems, was amazing.
GET THE SKINNY
Back to the skinny jeans–we bought her a few pair for school.  Lily puts her outfits together like she cooks.  Crazy combos that work, usually involving a jaunty hat and a poncho flourish.  She definitely has a funky style, but I know her skinny jean note was prompted by the approach of middle school.  Argh.

A Taste of 6th Grade

John took Lily to 6th grade orientation today.  Sounds like it went well.  She seemed excited and confident when she was telling me about it tonight.  When I left this morning, she ran out to the car and told me that she was scared to go to orientation.  I told her that was normal and reminded her that her dad was probably nervous about it too.  He doesn’t like new situations either.  She wanted to review where everything was at school, so we drew a map and talked it through.  

John said she remembered where everything was and showed him all her classrooms.  She’ll be in the two Gifted and Talented classrooms for most of the day, which we’re hoping eliminates some of the classroom-switching chaos.  As a twice exceptional kid, Lily doesn’t do well with transitions and change, especially when she’s overwhelmed in a loud, crowded situation.  

Lily practiced opening her locker and saw a lot of her classmates she knows from elementary school. Dad said the orientation was crowded and sweaty and loud, but that Lily handled it really well–didn’t get overwhelmed.  Help from the new meds?  Can’t tell yet.  But she did seem less tired tonight.

Sleepy Pete

Summer’s almost over, time to make yet another attempt to dial in Lily’s medication.   We haven’t found the right meds yet.  We’re been trying since 2nd grade and now she’s going into 6th.  We’ve tried almost every kind and have come to the conclusion that stimulants just don’t seem to work for her.  Some of them suck all the personality out of her;  she withdraws into a hoody with dark circles under her eyes.  Others seem to make her more irritable and moody.  All of them take away her appetite and make it even more difficult for her to sleep.  

Lily’s never been a great sleeper.  As an infant she needed lots of movement to fall asleep–rocking, walking, jiggling and once she finally fell asleep she was easily awakened by the slightest noise.  Friends would describe taking their baby to parties with them and letting the kid sleep in front of the speakers.  We had to tip toe around the house to keep our baby asleep.  

As a toddler, we worked hard to establish a regular bed time with minimal parental book-reading and drink-getting.  Eventually, Lily was easy to put to bed, but it took awhile for her to finally fall asleep.  She is still that way and has a hard time settling down at night.  I’ve heard that a lot of kids and adults like Lily have a hard time turning their brains off at night.

This leads me back to Lily’s medication.  After meeting with her psychiatrist, we decide to try another direction, a non-stimulant drug called Intuniv.  Intuniv is a long acting form of Tenex (guanfacine). Although Tenex is primarily used to treat high blood pressure, it is often used to treat children with ADHD.  Lily’s doctor thinks that could help with the anxiety of starting 6th grade.  Lily has been on it a few days and has been sooo drowsy.  I come home from work and she can hardly keep her eyes open until bed time.  Hmmm… we’ll have to keep a close eye on that.

Dreading the start of middle school

The countdown is on.  The day I’ve been dreading all summer is just around the corner… Lily starts middle school in a week and a half.  I’ve heard that there are other parents who actually look forward to sending their kids back to school.  I can’t imagine that, because for me, the school year is a lot of hard work and with Lily starting middle school, it’s going to be even more stressful.

This morning, I set up a special visit to her new school.  I know Lily needs extra time to learn her way around.  We walked around to all her classrooms and she was okay for awhile, but eventually she got overwhelmed and started to get upset.  She wanted to know exactly how things were going to happen, where they were going to happen, when they were going to happen… starting with getting off the bus–step by step.  I tried to do that and she seemed to calm down.

We still have 6th-grade orientation and back-to-school night before the first day of school, so I’m hoping that helps.  I mean, this is a twice exceptional kid who has months of adjustment every school year and this is at the same elementary school she’s been attending since Kindergarten.  A new school, plus all the added Executive Function demands of middle school… could be a rough transition.

That’s actually an understatement.  I’ve been trying to plan for her middle school transition for more than a year.  I shopped around for public schools, got Lily several evaluations, found her a psychiatrist, a psychologist, taught myself to advocate for her at school using www.wrightslaw.com and the book Wrightslaw:  From Emotions to Advocacy, shopped around for private schools, wrote demanding letters, attended many meetings, helped write a Behavior Support Plan and helped write a comprehensive IEP.  Thousands of hours and dollars later, I feel like we have good support in place for her, but the real test comes in a couple of weeks….

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