Monday, August 18, 2014

Monday Morning

                      Oh dear lord, do I have a case of the Mondays today.  sigh....  Feisty Pants, by contrast, is giggling and happy.  Thank goodness.  Yesterday she spent three hours straight whining and crying.  (Headache- it took two doses of ibuprofen and one of tylenol to finally beat it into submission.) It's her first official day of break and there is a Dr. Who special on to keep her occupied.  I, however woke up to Goo yelling about her g-tube leaking.   ALL. OVER. THE. FEEDING. SEAT. AND. FLOOR.  Her food is a special high calorie formula- read that as incredibly thick and sticky. Five phone calls to the doctor later we finally figured out and fixed the problem.  He wasn't in the office but the secretary was relaying messages back and forth which just made it all more complicated.  But it was messy and time consuming and not helped by Cheweverything Pants who just wanted to get right into the mess and "help".  Did I mention this stuff is STICKY? 
                   So I just get that mess cleaned up and FP finally fed when  I go to do the laundry and realize I am out of laundry detergent.  I make my own which is cheap and easy, but again, time consuming.  Just get THAT taken care of and laundry started when I step on something sharp.  I thought it was a small rock or (ewww) a piece of cat litter. (It's a zoo around here.)  Without even thinking, I tried to brush it off with my other foot.  Only to stab myself in the ankle with the little finishing nail I had actually stepped on.  So, now I have bled all over the kitchen floor.  And Cheweverything Pants is trying to help with THAT mess too.  It's not even noon.

                  Really, I shouldn't whine too much.  We didn't have to shlep to an ER or GI Lab to get the tube replaced.  Nothing was insurmountable, just tedious and time wasting.  But I did waste the most productive time of my day. (I tend to be umm, errr, a tad cranky in the morning so I keep my head down and concentrate on work.  Beats getting arrested for randomly slapping people.) This will probably end up coming out of our sleep later as we adjust our schedules to finish the work we didn't get done this morning.  Sigh, at least it's not hot today.   Then I probably would have simply burst into flames.  And then have to clean up that mess too.  Maybe, somehow I am burning off some karma.  In that case, deal.  Seems fair.  C'mon lottery winnings.

Sunday, August 10, 2014

Day Seven of Feisty Pants' Captivity

                      Well, I have not posted as much as I wanted to this week.  I really do try to post at least twice a week.  I like to shoot for three, mostly for the self discipline, but that rarely happens.    And the fact that I am sure you are waiting with baited breath for my every syllable.  (What do you mean, not really?!?)  But Feisty Pants has been sick again and home all week.   She has not been kidnapped - don't believe her.  Either her sinus infection never really cleared or was a tad antibiotic resistant or it was just a new one. (You never really know with Feisty Pants.  She can go from fine to OMG call the doctor in a matter of a few hours.)  So we have been home most of the week.  I keep trying to explain to Red Chief that she is not being ransomed but she does believe me. I also try to explain that if she is a captive audience, so am I, but that does not matter either.  She KNOWS it is all a plot to bore her to death.  She couldn't go to school, where the new boy in class is cute.   She couldn't go anywhere exciting (which is defined this week as "anyplace not at home").  Worst of all, no bike rides.  How rotten can we be?  She should run away from home.
                       I shouldn't bitch too much though, really.  She is not in the hospital.   The first five years of her life, she spent  the first week (at least) of August hospitalized.  So merely spending a day at the doctor's office as an outpatient is not awful.  A Feisty Pants who is bitching and complaining is a Feisty Pants who is not too sick.  I worry when she stops complaining.  That means she is either too sick or she is plotting.  Either way, I am in trouble.  It's just that I cannot get anything accomplished.  Between running to suction or help her blow her nose or stopping her from throwing herself off furniture or, my favorite, putting her darn g-tube back in (TWICE this week), we are not getting a lot done here.  As the antibiotics kick in, and she starts to feel better, she gets more bored and antsy.   As I type this, she watching tv and kicking her father saying, "Goo, bath. Hurry. NOW."  Explaining that we are waiting for the water heater to heat back up (we have just finished cleaning)  is making no difference to her at all.  Fifteen minutes is a lifetime when you are eleven and bored.
                         But she is, thankfully, on the mend and definitely better.  So, back off to school in the morning.  Back off to her normal routine of not cooperating with therapists as opposed to not cooperating with parents.  And chatting with her friends.  And making flirty faces at the cute boy.  And, maybe, just maybe, a miracle will occur and I can get something done around here by the end of the week.  Just in time for her summer session to end and her to be boredboredBORED for the last two weeks of her summer before the new school year starts and I have the blizzard of paperwork to shovel out from under again.  Feisty Pants' idea of running away from home is beginning to have its merits...

Monday, August 4, 2014

Nothing Personal

                      So.... the physics equation as been solved.  It's another sinus infection (with, perhaps, a touch of bronchitis.)  So a new round of antibiotics- a different one in case it's a touch of resistance from the last sinus infection instead of a brand new separate one.  But that's really no big deal with Feisty Pants, so not what I want this post to be about.  Instead I want to talk about exactly how stubborn special needs kids can be. (She's been a little cranky this weekend. Can you tell?) I was reading an article on how special needs kids are much more likely to be the victims of child abuse than typical kids.  They are also WAAAAAAAAYYY more likely to be punished in school and receive harsher punishments for the same infractions as typical kids.  (Honestly.  You can look it up but then you will need to give your soul a bath.  Don't worry, we will wait here.)   That seems counter intuitive.  One would think (or hope?) that we would be less likely to be harsh and inflexible with the vulnerable in our society but statistics prove otherwise.  And that got me thinking.   Surely, we human beings, on the whole, are not that awful and horrible that we are simply bully the vulnerable because we can.  Because they are vulnerable. I used to think it was because caring for someone with special needs was stressful and since, humans are fallible, some of us just cannot handle the stress well and lash out.  (And that some of us are just awful.)  But research seems to point to the fact that it's not quite that simple.  It seems on some level to also be about misinterpreting the behavior of those with special needs.   People don't understand why those with special needs may behave in ways that will make no sense to you whatsoever.  And that led me to thinking about stubborness.
                   Case in point, this is a conversation I had with very smart eleven year old daughter.  I came down from the shower last night to Feisty Pants yelling "Ummy, C'mere. Ummy!" (Mom, come here.) She wanted to bitch about about her father. "Goo told me. He TOLD ME!!!! (meaning he scolded her)  When asked why, she told me she threw herself off the couch and got hurt. (Not badly, just a boo-boo)  After he told her NOT to do so. Which she then did because she was mad that he had made her put clothes on after her bath.  (My kids are hippies.  They'd be barefoot and naked all day if we let them.)  So I asked her: "Did you know you shouldn't do it?"  (yep)  "Did you know you would get hurt?" (yep)  "Were you just told not to and yet you did it anyway?"(yep)  So why shouldn't Goo scold you?"  (dirty look)  "Did it accomplish anything but make your night worse?"  (really dirty look)  "Was this a good idea in any way at all, hmmmm?" (dirty look and tongue stuck out at me)  That's probably NOT normal  behavior for most eleven year olds.  They'll rebel and be sassy but not by hurting themselves.  Mine will.  And it's because she cannot slam her door or post how awful we are on her fb account or text her friends that we don't understand her and are evil and boring.  It's no fun and pointless to run away from home if some adult has to push your wheelchair for you.  What she can do all by herself  is throw herself out of furniture and give us a heart attack.  Just to prove we are NOT the boss of her, and that IS normal for an eleven year old to want to do.  If it only hurts for a few minutes it just might be worth it in her mind.  Because she IS that stubborn.  Most special needs kids are.  But we, as the mere mortals dealing with them, had better learn that it's not personal.  It's not about us. They are just being who they are.  Why should any kid automatically have to fit into our molds?
                   And that is the paradox of disabled kids.  You see, these kids survive amazing odds.  They handle illnesses that most don't survive.  They have pain tolerances that put adults to shame.  They get up every frigging day and struggle against awful odds and survive and thrive again and again and again.  They do not do it by being flexible and easy going.  They do not do it by being wishy washy. They do it by having a toughness and resilience that is awesome and staggering in its scope, like a tsunami of self will and determination.   And turns them into stubborn pains in the butt.  And we, as parents of these feisty ones, had better learn to laugh and roll with it or we will drown in it.  It isn't personal.  They didn't turn it on and point at us, so they cannot turn it off either.

                       

Friday, August 1, 2014

Physics

             Sigh.... double sigh... sigh again.  I knew this week was going too well.  It's not too hot.   The nights have been cool and sleepable.  (Shut up -that is too a word.)  Our only appointment this week was canceled. No one threw up.  Nothing broke down. Nothing burst into flames that wasn't supposed to burst into flames.  We got some bike rides in.  We got a few chores done.  We even started to catch up on paperwork.  We only had to deal with one state agency and the person at said agency was pleasant, prompt and efficient.  I've only had one nagging computer issue. (This paragraph will be in a smaller font for no reason I can fathom, at least on my machine.)   All this good stuff of nothing new should have been my clue.    Of course Feisty Pants would develop some new tic that makes us all nervous.
             When you are a special needs parent, you get very, very good at the big things.  The oh my god the helicopter's coming things.  The call 911 and get the oxygen going things.   The she's been transferred to Timbuktu where's my suitcase things.   You get really good at the tiny things.  Paint in her hair?  Clap for her- it meant she actively participated in school.  Coughed ick all her shirt at the store?  Hit the dollar store for a tee and change in the car.  We can always tie dye it later if it's ugly.  Said a new word clearly?  A new word that is NOT um, err, mother superior?  Calmly explain that swear words are for saying to speech therapists.  They'll appreciate the effort it took.

                    What you are not good (at least what we are not good at) at are all the weird, in between things.   Is it a minor cold or the start of pnuemonia?  Is she crying due to allergies or is she about to have a medical crisis?  Is she hiccuping because occasionally human beings do that or because her stomach meds need to be changed?  In this case, is she getting sporadic low grade fevers because she is working on molars (happened before)? Or is she getting them due to microaspirations due to not swallowing well (happens occasionally)? Or is she reacting systemically to an allergen in her environment (yup, we do that one too)?  Is she just been physically stressed due to her last illness and is what one doctor called "temporarily temporally instable" (seriously)?   OR, since she just got off antibiotics, have we gotten into a superbug and the antibiotic didn't work and she is about to get really sick (been there too, dammit)?    We cannot tell right now.  And will not know until she either gets better or gets worse.  Sigh.

                      So here we go again.  It's time for special needs parent physics.  You'll sit around and stare at your kid and do math at five gazillion miles an hour in your head.  Do I have cab fare on me?  Is the cell phone charged?  Where's the med list? Is it up to date? Is that a cough? What's her sat rate? What's her temp? Is she cranky because she's sick or because I'm annoying her every five seconds?  Do she look pale to you?  Do her eyes seem less bright? How about now?  Now?  Is she sleepy because she doesn't feel good or simply because it's nighttime and I've bugged her alllll day?  And Feisty Pants is feisty and eleven, so she will milk it.  "Don't feel good, need a donut"  "I'm sick, put on dizzy (disney)".  I'll be lucky this weekend if I'm not the thing bursting into flames.

Sunday, July 27, 2014

Papercuts

                You ever have one of those days that feel like you did something very wrong in a past life?  A thousand things go wrong and you can't seem to keep your stride?   Nothing major - no, then you would have leave to complain.  Just all the little things. And if you bitch, you sound like a whiner. Yup, it's one of those days.  My friend, Celtic Pants, refers to them as "death by a thousand paper cuts".
                 We've had to switch our weekend around.  For a great reason- a party, for goodness sakes.  But originally, I thought it was on Saturday, so when a dear friend we don't get to see often invited us to his going away barbecue I bowed out.  Only to find the original party (a baby shower) was on Sunday.  So we did not get to say goodbye to our friend and I feel really stupid.  Oh, and I thought the shower was coed.  So Goo and I tried to arrange our day so we could both be there. (We sleep in shifts- this means the time schedule is now like algebra.)  It's not coed.  So, Goo will get a real night's (day's) sleep but he doesn't know it's not coed so he may have a freak out if he wakes up and we are just gone.  And that means I am doing all the lifting and hauling with Feisty Pants- not normally a big deal here at home but can get tricky in a public place.  Baby changing tables are not meant to hold a 65 pound preteen.  Floors are dirty.  Wrestling her in and out of cars by myself is tricky when she is actively pulling a houdini on me.  Not taking her is not going to happen.  We already were evil and made her miss one event this week.  A second miss and she will definitely disown us due to our incorrigible boringness.  And it's hot.  And my head aches. And Feisty Pants has spent the morning whining because her head aches.  But don't worry, I am not gonna whine here at all. I would just put on my big girl panties and deal with it but this morning I could not find them at all.
                Ah well, c'est la guerre. I really am just whiny.  The caffeine and ibuprofen should kick in any minute now. (Really, any minute NOW, Universe, thank you.)  FP will get to see her cousins and have some fun just being one the gang. There will be good food and yummy cake and lots of relatives. And since it is family, the hosts, who are big mushballs, will make sure all the kids who show get some prize from the games, so FP will come home with some trinket clutched like a trophy to show off for the rest of night.  And Goo will get some sleep and happily forage a sandwich so I will even get of out cooking for the evening.  And all it really costs me is little bit of juggling our crazy schedule around.  Really, though, Universe, if you are going to see fit to give me a complicated kid and adhd, couldn't you have given me patience too? 

Thursday, July 24, 2014

Guilt Trip

         So, today I am the worstest,most borrring mom EVER.  Just ask Feisty Pants, she will happily tell you how her father and I are abusing her with boredom today.  We suck.  We are terrible, awful, no good, miserable monsters masquerading as pathetic excuses for parents in particular, and human beings in general.  We have ruined her life forever.   We kept her home on the bestest, most awesomest field trip of the year and we shall surely rot in the fires of perdition for it. We did not let her go to the fair.
           She goes every year. Her whole class goes. Her whole school goes.  The whole world goes today.  And we made her stay home.  Why?  Because we are evil that's why.  Her class made matching tie dye t-shirts to wear today.  She was gonna get to ride a pony.  There would be cotton candy and smelly chickens.  There would be rides.  But she is missing alllll of that just because we are obviously mean.  Forget the fact that she cannot get on any of the rides.  Forget the fact that actually gets bored by noon and complains the rest of the day.  Forget the fact that the sawdust and fried foods and random animals seem to set off her asthma. If it's hot, she comes home with a headache.  Especially pay no attention to the fact that Feisty Pants has been antibiotics for 8 days now and is having what I shall euphemistically call digestive issues (because "Dear God, what is that coming out of her now?!?" seems melodramatic).  We are simply keeping her home to day to ruin her life because we are miserable and want her to be sad too.  Just ask her.  She will tell you.
           Actually, she is not quite that bad.  She has refused to get dressed today.  ("No go? No clothes!")  She did tell me to "Get outta da way! and "chhhhhh" (she cannot say shh) every time I got near the tv.  We did try to explain this morning and apologize.  When we asked if she understood why, she nodded and said, "Uh-huh, you're EBIL (evil)" but no one got kicked so I'll call it a fair trade. I really do feel bad.  It always seems to happen this way.  There is always some event she is missing out on because she gets sick at the last minute or (like in this instance) the cure has become as bad the illness itself.    If she's smart, she will try to leverage this guilt trip into a real trip like a day at the local splash pad or a shopping excursion.  Just don't tell her I said so, she is tough enough negotiator without any encouragement.

             

Sunday, July 20, 2014

May I see a whine list?

         Well, it's been a bit of an eventful weekend.  At least at the start,  the microwave died in a horrible icky smelling way.  (What on earth is in those things?!? It burned out and said goodbye via a horrible rotting burning tire odor.  Honestly, I didn't know whether it was broken or possessed by demons.)  Feisty Pants' allergies finally did catch up with her and now she is on antibiotics.  Not a huge deal but she had a sinus headache and literally cried for eight hours straight.  Then in the wee hours of Friday morning, Goo went to hook up Feisty Pants for a feeding and found her g-tube had fallen out and was broken.  Which means an ER trip.  At 1 am.  Where the on call doctor did NOT really know how to replace one in real life -just kinda on paper.  I am not sure if he appreciated Goo's slightly sarcastic tone as he explained it, either.  (But the intern sure seemed to like it.) And then, we sent FP into school,  feeling like Mommy and Daddy Dearest, because the orthotocist is supposed to be getting her new knee immobilizers and he only goes to her school on Fridays.  She didn't even get them. sigh.....              
        I realize I'm basically whining here.  Nothing insurmountable or truly awful has happened.  My daughter is home and basically fine, if very whiny from the heat and her headache.   The microwave has been replaced and no one had to die of cold coffee or from being forced to cook at the stove (the horrors!).  Cheweverything Pants hasn't even demolished anything new this week.   We even managed to get some things done around here. I should call it a win.   But is seems like it's been a long hard struggle to get everything done.  And it has all been accomplished to soundtrack of a very bitchy whiny nonstop complaint as only a preteen girl can do in her best dolphin speech. (Good or bad, anything that agitates/excites a preteen girl makes them instantly revert to their former life as a really loud dolphin.)  Goo, the dear oh so foolish adult male that he is, thinks that talking logically to her will somehow help.  Really, he should know better, this is daughter number two.  He's just throwing gasoline on that fire.  If he tells her to "calm down" we will all have to beat him to death with sticks.  For his own good of course.
         Nothing to do really, but batten down the hatches and wait for the storm to pass.  The tylenol will kick in and lessen the little one's headache.  Eventually, she will whine herself to sleep.  Then, hopefully, the tylenol will lessen my headache.I cannot just throw choclate at her but noting says I can't lob some in my own direction.  A few days and this will all pass.  Probably just in time for the antibiotics to really do a number on her tummy and upset the other end of the apple cart.