Day 5 of my captivity….

21 Oct

The jailer is in a good mood, probably because her form of torture is so very entertaining to her.  I did try to wrestle her away from the torture device only to lose. I can feel my brain slowly oozing out one ear.  I don’t know how much longer I can last….

Maura’s still sick.  Barely.  Just a slight temperature, but enough to keep her home.  She’s in a great mood, but the constant stream of “Dinosaur Train”, “Winx” and “The Rescuers” has erased any knowledge I gained in college.

We did go to the doctor yesterday, to make sure there wasn’t some underlying cause for the fever.  Ear infections and strep were ruled out, but there is a virus going around and it seems to have gotten hold of the girl.  This morning she still has a very slight temperature, which means yet another day home from school.

We’ve hit the phase of me going stir crazy and her well enough to be strong-willed.  I’m also saying ridiculous things like “No, we aren’t watching “Mulan” in Spanish.  You can’t speak Spanish because I can’t speak Spanish.”.

(Maura is into turning on the closed captioning, and knows how to change languages on Netflix.)

(And it’s nothing against the Spanish language.  But if the girl decides to speak it, I will need to learn it first.)

I’ve now decided that I really need to learn how to bi-locate.  This way, I can be home with the little sicko, but also run out and go grocery shopping, or write, or do something besides plot the demise of every whiny little dinosaur on that friggen dinosaur train.

 

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No rest for the wicked

19 Oct

I had a lovely birthday week last week, with friends and wine and desserts and french toast and a pomegranate – but all that ended Friday afternoon.  That’s when I went from totally relaxed and feeling zen about life to Super Spidey Senses, Alert!

Of course it had to do with Maura.

Friday afternoon, I took her with me to the chiropractor (we’re hoping to get her used to how things work there so our chiropractor can work with her as well) and from the get-go, I felt something wasn’t right.  She was spacey in the car.  She was very quiet.  I tried to chalk it up to maybe she was tired, maybe she was nervous about being in a doctor’s office.  But at one point, she seemed twitchy and pale, but then a moment later was all “Ooo, I’m watching Magic School Bus on your phone, best thing ever!” perky.

I told the chiropractor that she might just be screwing with my head.  He laughed and said “Welcome to parenthood.”

She wasn’t.

We got home, she went and watched tv, all seemed well enough, I tried making evening plans with a friend, went to deal with something first…and found Maura laying on the couch, watching tv, complaining “Oh my head!”

Well shoot.

Took her temperature – 103.

And thus ended my plans for the weekend.  Instead of going out with a friend, I stayed home and cuddled Little Miss Feverish as she made four hundred demands on me (which is fine, I know she’s okay as long as she’s got an opinion.)  Friday night we put her to bed only for her to shiver at the cool blankets (which explained the earlier twitchiness, she was shivering…sigh..).  I got her settled.  She went to sleep.  I went to sleep.  I woke up at 5 am to peek in on her.  She was fine.  She slept in until 10 am, where we then transferred her back to the couch and demanded to watch “Winx”.  She vomited every so slightly, which is understandable – those long legged vapid “Winx” fairies make me slightly nauseated as well.  I hung out with her all day, watching my shows on my tablet with headphones and knitting while she watched her shows on my desktop. Every ten to fifteen minutes I stopped all my things to get up and meet a demand – tucking her back in, finding a different show for her, or trying to convince her that laying down would help her head stop hurting. And so the day went on. Eventually we tucked her back into her bed, where she went right to sleep.

Until 5 am this morning, when she did a belly flop onto our bed, right between us.

She was feeling vastly better.  It showed in her little perky wake up call as she crawled between us, elbowing us in the kidneys along the way.  Once she was certain we were awake, she decided to crawl back out of our bed, elbowing us in the kidneys again, and went back to her room to play.  Knowing we wouldn’t sleep because she could be wandering the house, Josh lured her back to our room with promises of a movie.  I found something for her to watch, and we tried to go back to sleep as she spent the next three hours elbowing us, poking her toes into my legs, using my hip as a pillow, elbowing me some more, stealing my blanket, poking her toes into me some more, trying to steal my blanket even more, and  taking over at least my side of the bed.  I’m not sure what she did to her father, but he’s probably equally as bruised up as I am.

Her temperature’s now only 99.5.  Just enough to probably keep her out of school tomorrow.  She is feeling great today.  The parental units are considering an iv hook up for their coffees and feeling like death warmed over spread thinly across toast.

Once, as an adult, I was re-reading the Little House series, and in the book where Laura gets pregnant, she wrote a line about how if you want to dance, you have to pay the piper, or something like that.  And I laughed, realizing what she meant.  But really, all of life is that like.  We dance, then we pay the piper.  No rest for the wicked.  There’s always something.  Those kids will screw with your head.  Welcome to parenthood.

Just tween enough to be slightly annoyed that I'm taking her picture, lol!

Just tween enough to be slightly annoyed that I’m taking her picture, lol!

IEP Season

14 Oct

Maura’s IEP is coming up.  At the sight of those letters – short for Individualized Education Program - every parent of a child with an IEP just shuddered.

So the idea that I’m here, going “Eh” over the IEP, is amazing, even to me.

Back in Michigan, we had to fight for everything for Maura.  Not just us as parents, but some of those working with her had to fight to make sure she got what she needed, what she actually needed.  Not just what the barest of minimums forced them to give.  I went into every IEP knowing how so many people had our backs, were going to make sure Maura had as much as they could give her, and I appreciated every one of them for working with us, and for Maura.

But it was draining.  And disheartening.  I cried – and I never cry at stuff.  IEPs made me cry.  I had to make sure I did my homework, had The Binder with all of Maura’s stuff in it, I would contact people by email, then print out every email conversation and put it in the binder.  I had a book to guide me through the legalities of the IEP.  I talked to people, to outside therapists and other parents, to find out what they thought Maura would need, what their kids were getting, what worked for them.  Then, when the day of the IEP came, I’d arrange for babysitting, because I knew I’d be there for hours.  Seriously.  Four hours once, with fourteen people. They never had a conference room big enough for Maura’s IEPs.

Why so long and so many?  Because at the time, the school didn’t have children with special needs, not like Maura’s.  It was her and one other student her age with the same levels of disabilities, and they weren’t sure what to do with them.  We were the proverbial guinea pigs the entire time we were in Michigan – for the new special ed preschool program, for the new resource room in the elementary school they had to create to handle a child like Maura, for inclusion to this degree.  It was a bit scary, I can admit that.

So four hour IEPs that left me feeling unsure became the norm.  Battles with the special ed director became the norm.  Ranting about the special ed director (who at one point told me my signature wasn’t necessary for the IEP) became too much of a norm.

To sit here, four years later, and have an IEP looming and the thought of it doesn’t make me want to drink?  That is still a gift I can’t get over.  I cherish the idea that I don’t have to worry and wind myself up and gird loins for battle.  I love the idea that an IEP doesn’t have to mean instant crazy-making.  I could hug each member of our current IEP team who make all this non-craziness possible.  I wish that every parent could have this good of an experience.  And I will never take it for granted, because I know that this could all change.  I could go back to the old ways, the tension and the tears and the loins girded for battle.

I’d rather not though.  I’d rather keep our new nice IEP ways.

Oh, I’ll have notes.  Suggestions as to how to help Maura grow and mature.  Questions as to why she’s being such a pill at school (go figure, she’s an angel at home!).  Questions about her future in this program (which I’m not doubting, she’s earned her place in the life skills program, just that she’ll be transitioning to middle school next year.)  And a couple apologies for being a slacker parent this year (though in my defense, I never even saw the paperwork sent home the other day, just the mangled note saying “Please send completed forms back…” – Maura beat me to her folder and took care of the forms for me.  Oops.)

The IEP will be a meeting as to how we can all help Maura grow.  As it should be.  And I am thankful for it, and this program Maura’s in, every single day. Because I know it could be worse.  I have been there.  And I never want to go back.

 

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