So, I have been reading more and more about what we should be doing as Americans to improve our educational system.  Over and over I hear people mention the idea of longer school days and longer school years.  I get why people want to talk about these ideas but I would like to point out a few things.         

             First full disclosure, my daughter is  (as anyone reading must know by now) disabled and therefore gets the majority of her therapy in school.  The upshot of this is that she already basically goes to school year round.  She gets a few weeks at the end of the normal school year and then a few weeks at the end of summer off. Other than that she goes all year.  I DEFINITELY think this is genius. Feisty Pants gets this wonderful opportunity because they don't want her to start sliding backwards so to speak, physically due to missing therapy.  As a natural result, she also does not backslide intellectually.  All kids should have this advantage.  It also would be easier on parents who work outside the home. Good daycare is often hard to find and even harder to afford.  Add to that, all the kids who need that school lunch and breakfast to make up for a lack of resources at home. (1 in 6 kids in the US live in poverty, I believe) and a year round school seems like a win/win for everybody.

         Having said that, a longer school year is not the same thing as a longer school day.  Our kids are already over scheduled in general.  And we are all underslept as a society, imho.  Maybe I'm old and crotchedy but I think we put too much pressure on kids anyway. Dance, athletics, clubs, music lessons, etc etc etc.  When do they get time to just be kids?  C'mon people, we have all seen (or should have seen) the research saying that kids need time to get bored and to have to entertain themselves, it's how they learn to be creative.  God knows we need them to be creative.  They are gonna have a big job running/ fixing things when we hand the world over to them.

         And speaking as a mom who has raised one kid who never fits the mold (too smart,too artsy, too flighty) and is raising one with no mold to fit (too feisty and different doesn't even begin to cover her), we need something that works for ALL kids from Hippie Pants to Feisty Pants to the straight A Ken and Barbie down the street.  We need to find a way for our schools and our teachers to be allowed to be creative.  Standardized testing is not working.  All we are doing is teaching kids how to take tests.  We need to go back to teaching them how to think not what to think.  And that means unchaining the hands and minds of our teachers.The best teachers I have ever seen all shared one thing in common. They were creative.  They found ways to incorporate the lessons in ways the kids thought of as fun projects instead of boring classes.  It is amazing to watch children blossom and work their cute little tushies off without even realizing how much work they are doing.  Why on earth are we not letting our teachers do this ALL THE TIME??  And while we are at it, why don't we pay them what they are worth?  Think about it, who is we all quote when we want to seem smart? Plato, Aristotle, Socrates.  Teachers- thousands of years later.  The people we want others to know we know, so we look smart, are teachers.

Some links for all the feisty ones out there.

  While I am still feeling smug for doing something five year olds do with ease (links are hard whinewhinewhine)  I decided to do another post I have been thinking about for a while.  The following are some links to great sites for parents of disabled kids.  This definitely only a beginning, but here a few that leap out at me immediately.

 

Wrightslaw-  a site run by a legal firm that specializes in educational advocacy for special needs kids.  Lots of links to articles and tips for becoming a better advocate for your child especially in the IEP process.  They also offer books and seminars if you are interested.

click here- Wrightslaw

 

SenSwitcher- a fun program for small children or kids with visual impairments. Provides great visual stimulation for kids.  (Older kids with normal vision may be bored but not always.  I have seen adults play with it.)

click here- SenSwitcher

 

Explore.org- not just for kids.  Has a section of live webcams for all sorts of things.  Jellyfish, Coral reefs, Beluga whales, puppies, bears, etc.  The jellyfish cam keep Feisty Pants entertained (and provides the exact right kind of visual stim for her)  for like, forever.  I defy you to try one of the live cams and not become completely entranced.- note this link I think takes you directly to the brown bear cam (the last one we were watching) but if you scroll down the page you can easily see the links to all the other live cams.

click here- Explore.org live cams

 

Clinicaltrials.gov- just what it says.  A site to search for clinical trials and recruiting studies.

click here- ClinicalTrials.gov

 

Feeding Tube Awareness Foundation-  a great site when starting down that g-tube journey or to network with other parents.

click here -Feeding Tube Awareness

 

My Child Without Limits.org- a site for kids 0-5 years with developmental impairments or disabilities.  Great for the preschoolers, but a good starting point to jump off to other sites. too.

click here- My Child Without Limits

 

United Cerebral Palsy-  Feisty Pants has CP but usually there is a site for every particular  condition.  (Just google the "name of condition" +advocacy)

 click here- UCP

Self Advocacy Association of New York State-  because nothing is so empowering as finding out how to use your voice or helping someone else find theirs.  If you don't live in NY, just google self advocacy + name of your state.

click here-SANYS

So, I figure this is a good start.Woefully incomplete but a good place for beginnings.  Feel free add your own faves in the comments.  I'd love to see what jumps into your mind first.

         Ok, I guess I seem  kinda bitchy from my last two posts.  I know, you're thinking "No way!  You're just a ball of sunshine, you are".  But, alas, if you look carefully, it's there.  I just hide it well.  So, perhaps, to alleviate what negativity I seem to be accumulating, this one will be about things we can do to spread a little change for good.

          To that end,  I am going to try to post links where you can go and spread a little good or at least fight a little evil.   We all feel better when we work to make the world a better place.

 

Care2.com- LOVE this site. Links to free donations,lots of articles on healthy living, lots of petitions.  And every little thing you do earns butterfly points which you can then spend to make even more free donations.  You'll make the world a better place. You'll feel great.  And it's all free.

click here- Care2.com

The Great Good Site- lots of links to free donations (just follow the tabs at the top) and if you want to shop, a store whose proceeds go to some great charities.  I've spent many a Christmas budget here- and never regretted it once.

click here- The Greater Good Site

Freerice- For those of you who don't already know this site, it is awesome. You answer questions about vocabulary, geography, math, science, languages, etc.  For every right answer, you get a little smarter and the World Food Programme gets ten grains of rice. A great site for kids.

click here- FreeRice

FreeKibble-  Feisty Pants picked this one as her favorite.(You can make the dog bark and kitty meow. Also It was started by a schoolgirl, so GIRLPOWER.) You answer a trivia question and right or wrong you give a donation of pet food to a shelter.

click here- Freekibble

RedJellyFish- Hippie Pants likes this one.  (Her quote "FEED ALL THE MONKEYS!!")  You can click to donate to feed a chimp and to save rainforest.

click here -Red Jelly Fish

         So there you go.  A few clicks of your mouse, a few minutes of your time and you have done your bit to make the world better. And in case you wonder why I do seem to harp on making a difference or beating back the darkness or making the world a better place. It is because of this.  Because every single day, I get up and watch my youngest child struggle to move and work  to get her point across when she is hard to understand.  Some days I watch her struggle to find a comfortable place to sit. Some days I watch her struggle to simply take her next breath.  I wonder why there is suffering in this world. I have come to this conclusion.  The reason there is suffering in the world is so that you and I will see it, roll up our sleeves, and FIX IT.   Now, let's all roll up our sleeves and get to work.

   Ye gods, If I hear one more allegedly thinking person whine about how Obamacare is such a disaster one more time I will hit them with Feisty Pants' suction machine.   CTFD, people.  I have seen the most ridiculous crap - people are using the ACA as an excuse to do horrendous things. That does not make it the fault of the ACA or the government in any way shape or form. I know of someone whose insurance premiums were raised BEFORE the ACA was EVER VOTED ON OR SIGNED INTO LAW.  The company claimed it was because of the ACA.  Really, do they have a TARDIS?  Are their insurance rates immune to the time-space continuum?  Are their employees wizards?  How does that work exactly?

                Now, companies are whining and complaining that they have to provide insurance to their employees.  So what?!? I would like to point two things. One- in a capitalist economy, capital is NOT sacred.  That is why its meant to be available to anyone who is willing to work for it.  Only socialists and oligarchs think that capital is sacred. A socialist believes it to be sacred and therefore should be held in trust by the state for all of us to share.  Oligarchs believe it to be  so sacred only a few should allowed to place their hands upon it ever.  (And betcha can't guess which few) Which are you?   And- two-  so what if it is an expense for you?  What's next? Should we abolish wages and other operating expenses just for you?  Some executives more and more remind me of spoiled teenagers- they want all the privileges and power of adulthood but none of the responsibility- like obeying the law and paying their fair share.  And by fair share, I mean living wages and taxes, dammit.     

                  I'm not saying it's perfect. It's not. Perfect would be a good single payer system where everyone rich or poor had equal access to health care.  But it does do this.  It gets rid of pre-existing conditions as an instrument of unfairness, a weapon used to keep the poor in poverty.  It means children like my daughter will not be doomed to having to spend the their entire lives as either rich or - and this is more likely- poor.    Because a preexisting condition is not simply an added expense, it some cases it is a lifetime sentence.  Many people need their medical care simply to continue to live.  Not to live better, not to live longer- but to sustain life at all.  And not always the people you think. Many people walk around daily because of medical intervention that keeps them that way. And when they don't have it, they will die.  So many have to either find a way to pay exorbitant, no I think a better word would be extortionate rates for this care or stay poor enough to get help with their insurance.  Disallowing pre-existing conditions means my child will have a more level playing field. One where she will succeed or fail because of her efforts and her talents and her ambitions maybe even blind luck.  But she will not succeed or fail because she has to take into account whether or not she will be able to afford yet another round of antibiotics or a new suction machine or whether she has to give up and move into a nursing home because she cannot afford an aide to help stay at home or get to college or go to work.  This gives my child a much better chance at a whole complete independent life.  And I would be a horrible parent if I didn't fight tooth and nail any thoughtless bastard who wants to take that away from her.

Warning, rant approaching...

Pssst....Pssst... Hey, Covidien, and my local home health equipment dealer, and New York State.  Wanna know a secret???  These new food pumps?  THEY SUCK.  OMG. They are awful. Seriously.  What is wrong with you people???

                    Actually, I know what's wrong. And since this is probably the only way any of you are gonna ever listen, I am gonna tell you.  First of all, the pump (not going name names but it rhymes with schmangaroo schmoey) is AWFUL. The old pump (The Ross Patrol pump) was not perfect but it could be managed.   The new pump SUCKS.  Its annoying.  It tries too hard to be idiot proof and ends up being idiotic. Its like going from a pc to a mac. (and  I HATE macs.  I'm a pc girl allll the way.)  It does not understand the difference between a continous feed and a truly intermittent one. If you follow the badly written manual's instructions, when it gets to the end of a feeding IT JUST BEEPS ONCE AND STARTS ALL OVER AGAIN.  That's effing dangerous. It took my computer tech husband an hour of monkeying around with it to figure it out. And it's not at all like the manual says. Also, you cannot properly clean these new food bags without taking forever.  With the old Ross bags, you could break the safety band and let hot water rinse through.  With the new bags you have to hook it to the machine and HOLD the button down while the water SLOWLY drains through- at least 10  mins per feeding with Feisty Pants very thick formula.  And since my hands are busy holding down buttons and standing still, that's 10 minutes six times a day- an HOUR of my day YOU waste and I cannot get back. Your suggestion of emptying the bag out and then  just rinsing what is in the tube itself is ludicrous.  CHOP (Children's Hospital of Philadelphia) did a study a few years back- bacteria begins to grow in food bags even when "properly cleaned" after just four hours. Which is why they use a new bag every four hours.  My daughter's insurance pays for one bag per day.

                      Also, when I got stuck with this pump I despise, I called every home health company in my area.  They are all using this ONE pump.  No choice to consumers. WTF is wrong with you???  I was told by several vendors that NY says that if you deal in durable medical equipment you have to have a technician on staff well versed  in said piece of equipment.  And you are all apparently such cheap twits, umm, errr, money conscious managers that you will train your techs in one maybe two machines of any type.  Exactly what made all you companies decide this was the ONE pump you were willing to offer? I suspect all sorts of shenanigans on this one. (Note to any up and coming companies out there, I have no loyalty to any company that has no loyalty to consumers-  first DME company willing to actually be flexible and use more than one machine, I will drop the old company faster than a hot potato.)

                        Soo, to all three of you, since you did not give me any choice in the matter, please be advised of this. If my immunocompromised daughter come down with ANY kind of illness I can trace back to this awful awful pump, I will sue the living hell out of everyone involved with making us use it.   Just so you know.

Waiting

               Sooo ok, as I sit here, I am on hold with a doctor's office.  No biggie, it's only been ten minutes and it's for a routine matter involving scheduling a flu shot for Feisty Pants.  But it does remind me of something I DESPISE about the medical profession as a whole. So this little shout out goes to all the administrators in hospitals and medical office complexes out there. 

            Hi there, dude (or lady) in a suit who probably works really hard and just thinks they're being extra efficient.  OUR TIME IS VALUABLE TOO.  Seriously, stop forcing doctor's offices to over schedule patients. I hear doctors and their employees complain all the time about people who show up late or cancel or just don't to bother to show up at all.  And it is indeed, incredibly rude.  But why is it I never hear you comment on the parent of some sick kid who has been there for an HOUR in your waiting room with a crying baby?  Do you realize what it's like to be sick and miserable and have to sit there on those always uncomfortable seats having to be quiet and behave? Especially, if say, you're five years old? Once, when feisty pants was little I sat in the waiting room of a medical lab for over an hour- with a very sick little girl with pneumonia, on oxygen, with an order that had STAT written across the top in big bold red ink and your employees acted like it wasn't in any way urgent.  (Another doctor- a stranger- who happened to be there for a blood test of his own, took one look at FP and started yelling until someone took care of her immediately or for all I know we could still be there in that purgatory of a waiting room.  BTW- in case I never thanked you Doc, Thanks!) You're worse than airlines with overbooking.  I know it's the insurance companies insisting on you seeing as many patients in the shortest amount of time.  But I bet you there could be a way if we ALL rebelled to put an end to it once for all.  (Maybe, next time someone sues over a misdiagnosis you could turn around and sue their insurance provider for forcing you to not spend enough time to do the job right? just saying.)  

            And for the love of all that is good and holy in this world, hire enough people to run your offices.   I watch the office people scramble all the time to try to deal with all the scheduling and billing and phones and charts while cranky parents and crankier patients who HATE waiting want to be taken care of right NOW.  Your answer to this, dear administrators seems to be not to hire more people, but to put in a frigging annoying automated phone system that makes the wait EVEN longer.  You guys should have to work in a busy doctor's office for a few weeks before you are allowed to run a clinic system or hospital.   You might make better, more humane decisions.  And you should have to deal with a severely disabled patient and their caregivers  and their feedback SEVERAL times during that period. With a case like Feisty Pants, time is always of utmost importance.  If I can get her to the doctor and get the tests and meds we need and nip an illness in the bud before it turns into pnuemonia, we can usually keep her out of the hospital.  But if I cannot get past the phonelines and office staff (not usually an issue but occasionally I get some newbie who thinks I don't really mean it when I say "She needs to be seen right now" or somehow thinks I am an overdramatic parent.) make no mistake, a cold turns into a lung infection and often a ER visit, and transfer to a bigger far away hospital.  I once sat on the phone for over two hours before I gave up hope of ever speaking to a human being.  Hint to other parents- know what I do for that issue?? If can't get through after 20 mins and FP needs to be seen  I just show up. Seriously. I show with a sick kid in a wheelchair and an oxygen tank and her suction machine and say, "I tried to get through but couldn't so I decided to save you some time and here we are" Big smile.  "How soon can you get me in?"  Then I sit where they have to watch her cough and stare at them until they take us back to see the doc.  I have no shame or scruples when it comes to FP's medical care. The difference, dear administrators, between you and me is that I think that is a virtue.  And the better you staff those offices, the less likely you have to deal with me.

Wisdom from my favorite guru.

Just some collected bits of wisdom from Feisty Pants over the years.  I thought perhaps I would list some so that we can all benefit from the little quirky Zen master.

                -English boys are cute because they're English.

               - If you meet Bigfoot and he smells, don't tell him because it might hurt his feelings and then he will go away.

               - Hug your Goo when he smells good.  (Goo is her word for daddy)

               -Art is IMPORTANT. (this is ALWAYS said while stomping foot for emphasis)

               -It's not Sleepy Hollow, it's Spooky Hollow cause there ain't nothing "sleepy" about it.

               -Everything should smell like fall. Unless it's Christmas, then it should smell like Grandma's.

               -Don't wash off glitter, that wastes it.

               -Dogs are nicer people than people.

               -Don't mess with Derr Who(dr. who)- he has a SCREWDRIVER.

               -Football players run better with nice hair.            

                     -Maybe all the grumpy people DO need to eat a snickers.

               -Spooky things are awesome because you can cuddle on the couch when its spooky and then  it's all cozy.

               -Skulls are awesome cause they are spooky and friendly.  (when asked how- she pointed and      said, "See? They smile")

                -Sometimes you do have go to bed and think about stuff.

                -Fish are kind.

                -EVERYTHING tastes better with chocolate chips on top.

                -If you meet a ghost say "hi".  Then run.

               - If you're not going anywhere then you don't have to wear pants.  Unless it's cold, then wear pj pants.

                -You can't be sad when a fat puppy wiggles.

                -If you are really sad, you gotta sing the worm song.

               

So there you have it.  The great secrets of life from a ten year old.  You're welcome.