Saturday, April 19, 2014

Some last minute egg ideas.

      So, to all of you over-organized, over-achievers out there.  You know who you are, all you folks putting the finishing touches on your homemade centerpieces while your lovely homemade pies cool on your spotless countertops.  You loonies sweetly tucking junior into bed in his nice clean jammies as he drifts off to sleep uncomplaining.  You are officially dismissed. I hope you have a beautiful Easter and let me know how it goes once the meth wears off.
       As for  the rest of us, well this post is for you  If you are anything like us, you are not ready.  The baskets haven't been found.  Half the candy has mysteriously disappeared. The kids are fighting and you forgot the effing eggs.   I can't help you with most of it. We are busy solving the mystery of what Cheweverything Pants did with my shoes.  And the children are complaining about headaches. (ahhh Spring.)  But I can give you some last minute egg ideas. So here goes.
         First, crayons are your hidden weapon in making cool eggs.  Cheap crayons are best for this.  (Like the ones restaurants give to kids to keep them occupied.) They are waxy and that's what you want.  Let the kids (or you) draw on the undyed eggs whatever suits their fancy- names, faces, swirls,flowers, polka dots, anything goes.  The wax will keep the dye from sticking and make them look very arts and craftsy.  Then just pop them in the dye and and boom. Oh, and don't forget stickers.  We have stickers everywhere here in FeistyPantsLand (Fp is bribable so we keep them like currency)  Take Feisty Pants' word for it, glittery stickers make everything more awesome.
        As for the dye- some quick ideas for when you don't have or don't want a dye kit from the store:
       1)Simple dye from food coloring- simply mix 1/2 cup water, 1 tablespoon white distilled vinegar and approximately 20-25 drops food coloring.  You can mix to form your own colors and darken or lighten as you wish.
      2)For the uber natural types- all natural egg dyes.  Start with two cup water and two teaspoons white vinegar (for each dye)then add the coloring agent and boil for 20-30 minutes and strain.
  For blue- 2 cups chopped red cabbage.  For yellow- two tsp turmeric. For purple- 2 cups blueberries. For pink- four beets chopped.
      3) Kool-aid (not just for teens hair anymore!) any packet unsweetened kool-aid mix and 2/3 cup water.  Easy peasy and you probably have some in the house right now.
           There you go... Hope I helped.  Have a happy Easter!

Tuesday, April 15, 2014

A Few Notes from FiestyPantsLand

            Well, we have survived seven days here in FeistyPantsLand so far we have managed to keep her mostly occupied.  Several walks, including one good long one.  She is having fun deciding on how she wants to color eggs this year.  Her and her sister will debate forever and then do it the same way they always do.  I think the debate is part of the fun. No bike rides yet- we simply haven't found the time to wash it and adjust the seat and pedals  and belts and pads.  (Adaptive bikes have a lot to be adjusted on them)  And so far only one incidence of violence.  To be fair, Goo should know better than to mess with Dr. Who time even if he was only accessing the on screen tv guide.  Fangirls  have their priorities, you know. Besides his shins will survive.  Feisty Pants can't kick that hard anyway.  And I'm happy to see her aim is improving.
             And it has been almost a week.  Feisty Pants officially hit bored to the point of mischief only thia afternoon.  Almost seven whole days with only one complete thwarting of a machine.  Today's flavor of rebellion and  resistance?  Sticky.  She managed to unhook the food pump from her adapter and escape her feeder seat all in one swift coup de gras.  A personal favorite activity of hers.  Her new cohort, Cheweverything Pants, even managed an assist by tracking through the mess and leaving sticky formula paw prints everywhere.  Nice to see some teamwork around here.
             I would have liked to managed a post earlier than this. It's been since last Wednesday.  Surely you must be in withdrawal from the lack of my oh so eloquent wisdom.  (Yes, I did type that with a straight face.  Why do you ask?)  But the computer is giving us conniptions and we've all been stuck (shudder) interacting with each other.  However, I am hopeful we've got that worked out, for the most part, and we can get back to the twenty first century. 
               Other than that,  we are blissfully boring.  No one is ill. The only truly crazy thing is the weather. So we have time to argue over Easter dessert and plan on our fancy schmancy egg designs.  (All the crayon art a hard boiled egg can hold.) May your Easter week be just a happy and boring.

Wednesday, April 9, 2014

This is not a Drill

     AHHH AHHHH AHHHHH... this is not a drill.  Feisty Pants is out of school for the next two weeks.  This does not sound like a big deal to you.  There will be no outside of school appointments (that I can remember anyway.)  So, Goo and I will get a little more sleep.  In theory, at least.  Especially Goo.  FP  is on her Easter break with a few days tacked on to either end due to her nurse's schedule.  No one is sick.  Spring is warming up so there may be bike rides.  We can spend the time doing fun spring time crafts and waiting for the Easter Bunny to fill our craws, er, I mean baskets with chocolate.  And take Cheweverything Pants for walks.  Sounds heavenly.  In theory -cue ominous music and roll of thunder.
                 In reality, Feisty Pants is a "high stim kid".  Which means she craves brain stimulation  all the time.  ALL. THE. TIME.  She doesn't walk unaided and has cortical visual impairment.  Walking and seeing clearly are both difficult tasks requiring lots of brain power.  Thus giving the brain plenty of stimulation. (There is a good physiological reason why a walk clears your head.) But she cannot get that and so, her brain craves input.  ALL. THE. TIME.  This is not a bad thing.  In fact, it's usually a great thing.  We want to rewire her brain and achieve independence.  Brains rewire through constant stimulation.  Her internal motivation is easily supplied by this need for input.  I can only imagine how hard it must be for parents whose kids don't want the stimulation or are touch defensive. It must make their jobs sooo difficult and discouraging. But Feisty Pants gets bored easily.  And has a hard time moving herself to manipulate her toys and entertain herself.  Music is awesome- but only gets us so far.  ( We do a form of music therapy called the Listening Program.  We even play music in her sleep. )  TV, cartoons especially, is actually good visual stimulation for her.  (How many parents can say THAT??)  But again, it's only good so far.  She needs sunshine, and fresh air and to MOVE MOVE MOVE.  But she weighs sixty five pounds or so- that's lot for me to pick up. She has spastic cerebral palsy- which makes it harder.  She cannot do things that people instinctively do when carried like bend at waist easily or mold herself into my arms which would make it easier.  And Goo and I sleep in shifts so it's only one of us to do the lifting and hauling.  And, silly mommy that I am, I intentionally encourage my daughters to talk to adults, even to complain. I want them to expect their voices to be heard.  So she will bitch.  A lot.  At me.  About how borrrrrreeeddddd she is.
                         Not that I want to sound like one of those parents who don't really like their kids.  I  actually like my kids' company. They are funny and honest and cool in ways I cannot figure out how to be.  And I'm grateful- every complaint is a sentence I was told she would not utter.  Every sneer is a statement about her self determination. Every whine is a moment of self actualization, whether I appreciate or not at the time.   I just feel I cannot accomplish anything with out neglecting something- her therapies, the housework, those pesky other people who live here.  Nothing for it then but compromise where we have to.  If you come to the house- and we are sitting around a dirty house in our ratty pjs bingewatching zombies or bigfoot- but Feisty Pants has a smile on her face, don't you dare say a word.  Or I will take it as a sign you are volunteering to help clean.  You have been warned. 

Monday, April 7, 2014

More Howling

          Since I appear to be on a bitchy roll here, I want to discuss something that has been making me effing crazy ever since Feisty Pants started regular (irregular?)  school.  I mean that as opposed to pre-school.  We did not have this problem there.  It has to do with society in general and the bus company in particular.   STOP FRIGGING TREATING MY CHILD'S EDUCATION AS IF IT WERE DAYCARE.    Frigging seriously, just stop it.   My child's education is different in a thousand ways- big and small, but it still is her education and I take it seriously. 
           What's going on, you see, is that the bus company plays fast and loose with Feisty Pants' pick up time to leave school.   They keep picking her up BEFORE her day is actually over.  And not just by a few minutes, either.  More like half an hour.   And that is pissing me off to no end.   They do for two reasons.  One, they are suffering from institutional thinking.  They probably think they are efficient and getting kids like mine home safely and quickly without interfering with the schedule of the typical kids.  Two, they also feel its okay to mess with my kid's education because it really doesn't matter, poor thing is probably tired.  After all, she is disabled.
             This is the part where I officially grow fangs and howl at the moon.  I don't give a rat's fanny how you want to do your job.  You do not have the right to short change any child's education so you can be done a little quicker or more smoothly.   This is their effing education.  You serve these children and get paid for it.  YOU compromise, not them.   And, secondly, even more importantly, HOW DARE YOU assume my child can just miss almost half a day a week because you damn well feel like it?  That's how much it amounts to.  Thirty minutes a day times five days a week.  That's 2 and 1/2 hours  week.  Four weeks a month.  Ten months a year.  I'm not even counting the summer session. (FP goes year round to school. But the summer session is much more laid back.  So I'll be generous.) That's about 100 hours of  school she is missing because you think her education doesn't matter.  At six hours per day that's about SIXTEEN AND ONE HALF DAYS A YEAR that you are stealing from her education.   You don't have that right.  You especially don't the right to steal that from a disabled child.
                I have bitched and bitched.  Everyone very politely blows smoke up my butt but nothing is changing.  So now, I am done howling.  Now you see my fangs. The bus company (mistakenly) thinks it is protected by its point of service contract against any legal repercussions. Although, I would argue that by violating my daughter's constitutional right to an education they have unclean hands and therefore should NOT be protected by any contract, especially one I did not ever sign.  But whether it's the bus company or my local district who would pay is irrelevant.  If this does not stop., I am going to ask that you give my child back the hundred hours a year (times every year she has been in your school district) by simply paying for a private tutor to come to my house and teach her.  There is a LOT of precedent lately for courts ordering this kind of reparation. I want my daughter to have a complete independent life where she takes care of herself, and has a job, and pays taxes, and annoys her fellow citizens by being bitchy and outspoken.  Education is the key and she has a legal right to it.   Which do you think will be cheaper for you, dear school administrators, by making your bus company do the right thing or by my making the bus company and you do the right thing in court?

Thursday, April 3, 2014

Howling at the Moon

       Sigh... double sigh... sigh again...  I am not quite sure where (or more precisely, how) I am heading with this post but bear with me if you don't mind.  I want to discuss a little about something very stressful that happens in every disabled kid's life.  Well, more to the point, something that happens in every disabled kid's PARENT'S life. There has been drama at school.  I don't mean the word drama to sound dismissive. It's not. I just want to make sure I don't tread all over some child's personal boundaries.  So if I sound sarcastic, it's not meant to be. I am trying to speak euphemistically in order to preserve other people's privacy.  Feisty Pants and I (and her nurse who accompanies her to school) missed the starting point, in fact, I think we missed most of it.   We were playing hooky by hanging out in the peds ward at our local hospital.   So I am probably getting things all wrong to begin with.  But we are not missing the fall out from everything and it's stressful.  It's stressful on the nurses at school, it's stressful on the parent's, it's stressful on the administrators.   Feisty Pant's teacher- who is made of awesome sauce, is caught in the middle.  Most of all, this stress is going to trickle down and affect our vulnerable kids.
           So, let's just say it involves some behavioral issues that might lead to some safety concerns.   There should be a logical, reasonable answer to fix this.  But emotions have gotten involved and now the drama is setting in.  (Again, the word is NOT meant dismissively.) But I would like to point out some things .  You see, I grew up with disabled siblings, and the kind of organized parents who pushed hard for their kids so I have seen this my whole life.  Disabled children bring the WONKY in EVERYBODY.  And it's getting wonky here.  But since it's MY blog  and since I am always logical and never wonky (or wrong- why are you rolling your eyes???) and since this is one of those rare occasions where being the mommy has a distinct advantage (who's gonna fire me???), I get to point out a few things.
          One- we parent's of feisty ones are not always logical or easy to deal with.  So what?  We want the sun, moon, and stars for our kids just like everybody else.  But you don't have society acting like you should be grateful for every little pittance or crumb thrown your child's way.   You are NOT called takers or moochers or treated with the mind blowing, INFURIATING passive aggressive bigotry that is the patronization thrown at our children every effing day.  ("poor thing, what's wrong with her?")  Add to that we are overscheduled, underfunded, and stretched taut by schedules and appointments and fighting with insurance and medical professionals and governments and schools on a daily basis.  And lots of disabled kids don't sleep well. So their parents sleep even less.   Every day a disabled kid's parent DOESN'T shoot people from a bell tower is minor miracle in, and of, itself.   If we haven't actually cut you then cut us some slack.  And stop acting like we are out of control because you don't like our tone.  Put on your big grown up panties and deal with us.  We've had to learn to be tough as nails for our kids.  Deal with it.
          Two- on the other hand, parents, we are tough as hell and sometimes that's hard to take.  I am so used to automatically fighting for Feisty Pants that I don't always know when to quit.  Growing fangs and howling at the moon for my kid is my default mode.  I am smart, blunt, aggressive by nature and always in a hurry. That has lead to me being accused of being, as my friend Celtic Pants puts it, as subtle as a brick in the face.  Might I gently suggest we all learn to take a step back and be more cold blooded in our approach?  Maybe we could get things done more easily and quickly by point blank stating what we need.  "I need to know my child will be made safe at all times and what you are doing to achieve that."  "I expect my child to reach college and expect we will all do what it takes to get her there.  How do we accomplish this together?"  People who work for institutions, especially underfunded ones, are stretched taut with their own concerns and may respond better to that style of approach.
         Three- to the people who work at the institutions (schools, hospitals, therapy settings, etc.) No offense, but we don't effing work for you and your rules are NOT our problem.  Just as you should never have to be the parent to our kids, we should never have to follow your policy simply because you have a policy.  Simply put, you are not the boss of me.  I am a real live grown up and understand that your policies and procedures are there for a reason. Usually really good reasons.  But slavishly following them and not stopping to think is frankly, a sign you are just going through the motions and not really doing your job.  Then we have a big problem.  And I am right to grow fangs and howl at the moon.  Or hire lawyers and then things really get contentious.  Our disabled kids fall through all the cracks due to the fact they are disabled.  Staying nimble and learning to be flexible is important.  If you can't do that, transfer out of dealing with Special Ed.
        Now, personally, I have the perfect answer in this case.  (Do I hear another eye roll?!?)  Webcams-  simply get permission from the parents and install a cheap little webcam to the smart board.  Parents could access a website and see how the kids are doing.  Those few bullies (rare, but it happens) who work with disabled kids would be quickly weeded out.  Our kids would probaby be better behaved if we saw what they were trying to pull when we aren't looking.  Schools and teachers would be protected against unfounded accusations.  And parents could volunteer through skyping to read to the kids, lead discussions, show off what they do .  See. Simple. You're welcome.   Next up, I solve world hunger.              

Monday, March 31, 2014

Belated Thank You's

            So, I want to make this post be about all the people I need to thank for all they have done while Feisty Pants was in the hospital.  A little belated I know, but better late than never.  In my defense, it always knocks us off our perch a bit when she is in patient.   It seems to take us forevvvvvvvvver to find our stride again.  It's like stumbling when you are trying to dance.  Other people seem to trip or miss a step or two.  I end up ass over teakettle in the orchestra.  But I digress...
           So, thank you everyone at Lourdes Hospital, your diligence and dedication are beyond compare.  We always bring our beautiful, vulnerable child to you first, and we are never disappointed.  Everyone, from the doctors and nurse to respiratory therapists and X-ray techs to phlebotomists to kitchen staff and housekeeping , everyone is professional and kind.  Not everyone deals with kids well, but even when Feisty Pants is screaming and swinging (or even dropping a f-bomb) not one of you ever bats an eye or even say a cross word.  That takes a lot of patience.  Thank you.
            And thank you, friends and family, for rides to and from the hospital.  It's hard enough to tag team parent in shifts at home.  It's nigh on impossible to walk an hour each way (we have no car) and still get anything done.  People like you rarely get the recognition they deserve,  so, THANK YOU.  It was kind and amazing and awesome.  You all kept saying it wasn't a big deal. Yes, yes it was.  You are big souls for helping.
            Hippie Pants, you didn't feel good all week and a new puppy while fun, is a heck of a lot of work.   Yet you dropped everything and shlepped you and Dinky Pants over here to clean up puddles and keep the puppy from chewing up/peeing on everything.  And you did it without bitching even though you were tired and felt like hell yourself.  Even when I was bitchy.  Thank You.
            Oh, and thank you all the various people who are a part of Feisty Pants' regular routine.  You all have to learn to keep on your toes around FP because we cancel and shift your schedules around often with little or no notice and yet you are always gracious about it.  A special thank you to those people we called two or three times and to those we forgot to call at all, because we forgot where we were on our list of phone calls and tried to just wing it.  None of you called us on it.  That was really nice of you.
             Thank you to the woman who runs the Starbucks kiosk at the hospital, too.   You are always kind and extremely sweet and friendly, no matter how cranky we are (or the bitchy person ahead of me in line is).  That takes a generous spirit to always be that sweet.  If no else noticed, we did. 
             And to anyone else I am forgetting.  Thank you.  I've probably left all sorts of people off this list.  It's not on purpose. I just run out of attention span sometimes.  How about we all just pretend the oscar music started playing and my mic cut off??

Thursday, March 27, 2014

Things that make you go Hmmm

               So, we have noticed something odd here in FeistyPantsland.   Since Feisty Pants has been home from the hospital, the new puppy, Cheweverything Pants, and she have been inseparable.  That's not unusual.  After all, human or canine, puppies love puppies.  The puppy insists on sleeping at FP's feet.  Again, not unusual.  She is even very gentle with Feisty Pants.  STILL not unusual.  What is unusual is that FP stops snoring the minute Cheweverything Pants climbs into her bed.   And breathes quietly all night.  As long as the puppy is with her.  THAT'S unusual.  There's no reason for that that we can think of.
                   Not that we mind, heck no.   Easier, more quiet breathing is AWESOME with a capital AWE.  There is simply no logical reason we could think of.   We even mentioned it to FP's pediatrician this morning at her follow up visit.  His answer- "There is no medical reason for that at all."   He scratched his head, literally.  He did surmise that maybe the puppy's presence was relaxing for Feisty Pants.  So that's as close to an answer as we have right now.  Although as he left, he looked at the resident he had with him and said, "Sometimes medicine has no logical answers for everything." 
                    But that's part of the miracle of pets, isn't it?  That for simply giving some room in your home and some room in your heart, you get paid back about a gazillion times over.  A bowl of kibble and a few pats on the head and in return you get better health, lower blood pressure, less loneliness, lessons on empathy and happiness and living in the moment.  Forget cathedrals or temples or saints or intelligent design, if there is an eloquent argument for the existence of a deity, it lies in the quiet heart of a contented dog nestled at your feet while you sleep.
                   So whatever mojo or non magical phenomenon is going on, we're kinda thrilled. It's a small victory, really.  But anything that makes anything better for Feisty Pants is amazing and very welcome around here.  And if it's something Cheweverything Pants is doing by accident or design, well done Alfie.  (Who's the bestest puppy, ever??? )  Not frigging bad for someone nine weeks old who is still scared of heaters, large leaves, the dark and going down stairs.  If we can just lick house breaking, we are all set.
                 And thank you, Feisty Pants' aunt and uncle.  You simply wanted to get her a great birthday gift.  Everyone remembers their first puppy.  But Feisty Pants' energy and ability to do things is always connected to how well she is breathing at the moment.  You may have done so much more than you know.