Wednesday, October 30, 2013


            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.

Monday, October 28, 2013

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.
 
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.)
 
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.
 
Clinicaltrials.gov- just what it says.  A site to search for clinical trials and recruiting studies.
 
Feeding Tube Awareness Foundation-  a great site when starting down that g-tube journey or to network with other parents.
 
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.
 
United Cerebral Palsy-  Feisty Pants has CP but usually there is a site for every particular  condition.  (Just google the "name of condition" +advocacy)

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.

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.

Saturday, October 26, 2013

         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.

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.

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.

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.

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.

         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.



Wednesday, October 23, 2013

   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.

Monday, October 21, 2013

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.

Friday, October 18, 2013

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.

Wednesday, October 16, 2013

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.

Monday, October 14, 2013

Bullies

                Sigh... I was reading about those horrible letters given to disabled people in Washington (Oregon?) where it was implied that the disabled people were moochers and somehow ought to be judged by their neighbors to see if they were deemed worthy of the label.  And now I would like to have a conversation about bullies.  I don't just mean your run of the mill give me your lunch money kind.  I mean the otherwise normal people who don't seem to be complete jerk offs until the second they feel threatened.  Which is usually how they feel A LOT.  I've been thinking about why there seems to be so much of this awfulness lately. I am sure part of that is simply that we are becoming more cognizant of the problem.  We are discussing it and therefore we notice it more.  Some, of it is all the things we are thinking of like the anonymity of the comment section of websites.  Some of it is grumpy old upper middle class white guy anger at the fact that they are aging and the fact  that racism and sexism, while still pervasive and awful, are simply less fashionable.  (It must be hard to live in a world where it no longer automatically means you get a head start on everybody else because you're male, white, and belong to the local version of the right religion) And I am personally convinced there is bully muscle in your brain- the more exercise it gets, the bigger and stronger it is.
                 We are at least beginning to deal with the issue of bullying. But so far it's been mostly "what to do about it when it happens in school" conversation with our kids.  That's great, but I don't think it's enough.  I worry we are not having the right conversation yet.  We need to be talking about power  because that is what bullying really is all about.  When some people don't feel powerful, they act like bullies in attempt to gain some. And, lots of times, it works.  Its a cheap and easy form of psychological power, like junk food for the mind.  But it's still power.  And just like junk food it so terribly bad for everyone.  It warps our minds and souls the way junk food warps our bodies.
                   None of what I just wrote is new. Not one word. So why all of sudden do we seem to have forgotten that?  Is the anonymity of the net that allowed people to turn into trolls online now spreading to real life?  We have people completely demonizing the poor as if we are going run out of food tomorrow.People who claim the government we all pay for should not provide services. (Really??  What other function does it serve???  It's government's only purpose. We all put in our dollar and the roads get paved.) We lionize successful sociopaths like Ayn Rand and Donald Trump but demonize teachers who work their tails off for our children and the cops and firemen who pull our tushies out of all sorts of trouble.  People who are armed to the teeth fear the idea that we might want to even question why they need to have enough ammo to blow up a small nation.  People who fear other religions so badly they want to police them.  Some of it is of course, self aggrandizement, if every one is out to get you, why gosh darn, you must be important.   Some of it is simple immaturity. They are psychological teenagers who do not like he fact that rules apply to them and if you want the autonomy of adulthood you have to take the responsibility too.  Mostly, I suspect, it is that for whatever reason they feel small and powerless and that feeling just pisses them off to no end.  My friend, Awesome Pants, says she suspects it is because we have forgotten how to feel shame at own behavior and how to use that do better instead of just to get a reality show gig.
                    In the end though, it doesn't matter.  What matters is what we do about it.  We need to use the internet to bring back our sense of community.  We need our institutions to serve all of us not just the rich and powerful.  We need to start rewarding useful people instead of pretty but empty people.  We need to recognize that EVERY child is a vast untapped pool of potential and as adults our responsibility is to learn to draw that out.We need to look our children in the eye and say "Yeah, its pretty messed up, but we're working on it. And you will too."  Because NOTHING beats feeling powerless like finding out you have the power to change something, anything for the better.

Friday, October 11, 2013

Anything I Can Do to Help?

       So I get asked this question a lot.  "Anything I can do to help?'  It's sweet and amazing, and usually very welcome.  But, sometimes I am a wee umm,  er, hyperfocused so I cannot get right back to you on that.   So, while I have five minutes I thought I would maybe stop to answer your query.
    Usually, the answer is a resounding yes.  However a more specific answer is little more complicated.   Often, its just get out of the way and pretend you didn't just hear me swear or pretend I do NOT smell like combination of stale coffee and angst.  Also, watch your toes. There is a reason I don't drive a car but no one makes you get a driver's license for a wheelchair so you are all your own safety wise.  (Good luck with that- and don't bother to sue I have no money)  Opening doors and holding elevators is always appreciated.  But beyond simple things like that , there is actually several things you do to help any parent with a sick or disabled child.
      First of all, take a breath, relax and have a little mercy.  I don't know about other parents but you know that day when you just seem to do everything wrong because you're tired and late and in a hurry?  That's my norm.  I am usually sleep deprived and overscheduled.  I can't find my keys, Feisty Pants usually found some new bizarre way to ruin her outfit right before we need to leave for some appointment.  And at any random moment, she can and will decide to bitch up a storm about whatever is bugging her this second and needs to be fixed nownownow.  Please give us a second to deal whatever fire needs to be put out before we can deal with you.  You are probably some one I need to deal with and are probably important but you will not figure out how to escape from your wheelchair or have a shrieking meltdown because I didn't undo your legstrap this second.  Or throw your expensive eyeglasses into traffic because its fun when Mommy says THOSE words.  Or choke and need to be suctioned so you don't stop breathing at random intervals. And btw, sorry if I seem distracted, but I do have one eye and/or ear on her.  The sound of someone stopping breathing is NOT a gurgling choking noise.  The sound of not breathing is silence and I am always always ALWAYS listening for it.  You will never be more important than FP's next breath.  And I am not one damn bit sorry for that either.  (Or as my friends say, "when the Zombies rise,  Mikki's tripping everybody")
          Also, if you really want to help. There are about a gazillion things you can do that won't take up too much time or cost you very much money.  Live near a Ronald McDonald House or something similar?  Drop by a dollar store pick up a few bars of soap or bottles of shampoo, ten pack of razors, a few decks of cards, things like that and go drop them off.  Save the pull tabs from your soda cans and energy drinks and drop them off too. (They recycle them for money.)  Drop off old books or a book of stamps at your nearest hospital or nursing home.  I have a lovely friend (Hi Celtic Pants) who once swung by an ER we were in and dropped off two coffees and a couple of cheeseburgers to my husband and I before disappearing in cloud of thoughtfulness like a grown up's fairy godmother.  You don't need to be a millionaire or a genius or a saint to make a difference.  A little imagination and some patience will do wonders.

Wednesday, October 9, 2013


      So today I want to write about  a policy issue.  (Anyone who knows me is rolling their eyes and thinking, "It took you THIS long??")  It's seems like not a big issue, but it is near and dear to my heart.
      I want everyone to support the idea of paid sick leave.  Seriously. Sign a petition or two (or twelve).  If you look around on the net, you will find many.   Bug your workplace, bug your congresspeople, bug everyone who sits still long enough.  It's not a huge change for the modern workplace.  Chances are if you are even lower level management you have it already.   Not for all the obvious reasons- you know, where daycares and schools don't allow sick children to stay so their parents have to stay home with them.  Or the fact that so many people cannot afford to lose even one day's pay, let alone 2 or 3 days while they are contagious or to simply feel better.  Or the fact that it makes sense for businesses too.  A person who can stay home when ill will not give half your workforce their illness. Even if the sick people come to work, they will NOT be as productive.  Would you rather have a few missing and 3/4 of the people still as productive as ever or EVERYONE doing bad work because they are sick and miserable?  Which do you think will cost you more in the long run? -hint I already know THAT answer.  And if you don't know that answer, you should.  Go look it up- we'll wait.
      And I don't even want you to support paid sick because it simply the moral and decent thing to do.  (Exactly what kind of evil d--k wants to force people to work when sick, anyway??  Since when did being a successful human being mean proving you are a miserable pr--k, when did we start worshipping the bully???) 
      Nope, I want you to support paid sick leave because its the best thing you can do for your own health. You don't want to catch what every else has. I don't want you to catch what everyone else has.  And I REALLY don't want you to give Feisty Pants what everyone else has.  The very people who tend NOT to have paid sick leave are the very people who clean our homes and schools, serve us meals, prepare our foods, check us out and bag our foods at the store.  The very people who cannot afford to take a day off are the people who touch our bodies, our things, our food on a daily basis.  If all of us could afford to stay homewhen ill, we will not be touching things when sick that you will be taking into your house and your mouths.  And lest you think, it's just a cold probably,  what is a bad cold to you is often a death sentence to a premature baby or an ailing grandmother or a disabled person.  What is bad cold to you was a 40 THOUSAND dollar medivac helicopter ride, 10 days on a ventilator and two weeks hospitalization to my then four year old little girl.  And it's something you can do something about.   You can sign a petition or write a letter. (I recommend Momsrising.Org. They rock!)  You can save lives (perhaps even your own) without even getting up from your computer or putting on real clothes or anything. You can make a difference from home with bothering to even get dressed or leave the house.  How much does that rock??

Monday, October 7, 2013

          Today is kind of a bitch. Not a scary ambulance ride bitch, just a "sigh, did that break and who do I have to pay now?" bitch. I don't want to get into it. Let's just say we all have crappy days and leave it at that.  What I do want to do is defy the crappiness. So, I  want to write about what I appreciate.  Maybe a list...
       1)  I really love boring days.  I dunno, maybe I'm old.  (Although, I like to think of it as a being a frigging grown up)  But after the crazy roller coaster that was Feisty Pants until she was six, I like boringness.  It's not that I want everything to be the same. It's that I like having the idea of possibilities.  I could go for a walk. Or take a shower.  Just have an evening where we argue about a football game instead of what time to take FP to the ER.  The girls and I like to think we're crafty. I like the idea I could get a whim and paint something.  Even if I never really have the time. It's the possibility that tantalizes me.
         2) I love my neighbors.  I've said it before. It bears repeating. They are kind and helpful.  And most of all, incredibly tolerant. They didn't complain when sirens and cops and ambulances were here ALL the time.  They didn't complain when Feisty Pants was small and all her therapists and social workers and various teachers etc, would come to the house about a million times a week and take up all the parking in the neighborhood.  I wonder if they thought we were a drug den.  Cars in and out all the time and sirens at 3 am.  When FP got to the point that we could her take out and about in the neighborhood for  walks etc, they all said "Oh, NOW we get it."  And then started mowing my lawn and helping with snow shoveling. They take nice to whole new level.  If I could bottle and sell whatever amazing sense of decency they have, I could not only get rich, but save the whole darn world.
         3) I love the Library of Congress. They have a program for the visually impaired where you can get a digital reader and free digital downloads of any book. Feisty Pants has a cortical visual impairment- which means her eyes work, but her brain doesn't  quite know how to put the picture together.  We were lucky enough to be picked for a digital reader early in the program and voila, just like that, I found out I have a kid who likes Harry Potter and Captain Underpants for more than half an hour at a time(no surprise for those).  But also, I have a kid who LOVES Shakespeare and Dickens. BTW- they now have a FREE app for the digital reader that turns your smartphone or tablet into a reader and allows access to the same library for books.  I cannot find the link yet.  If I do I'll post it the comments. Or if you do- feel free to post it in there  too.  
           Huh, whaddya know...  just three things and I do feel better. And I didn't even get into how my coffeemaker is practically my boyfriend. Let's make this a conversation.  What everyday things do you appreciate most?

Friday, October 4, 2013

Presenting Feisty Pants

         So thinking aloud,  I asked FP what I should write about this time. Her answer was her typically shy response of "ME!!"  So we decided to do it interview style. It looks like a short session but this took about an hour.  Her speech is garbled and she intersperses words with signs.  So, without further ado.  May I present Feisty Pants...
  Interviewer (aka Mom): First,  is it alright if I call you Feisty Pants?
  FP: "Yep.  Well, a little bit."
  I:What would like people to know about you?
  FP:"I'm ten. I love my bike and my sister.  And you're mean for not taking me for a bike ride"
  I : "We did not go for a ride because you tried to throw yourself off the bike"
  FP: "Nuh-uh.  And soo? You're still mean"
  I:  Do you mind if people ask you questions about your wheelchair?
  FP: "No, I mind when big people don't let me get out"
  I: Ok, but what about kids asking questions?
  FP: "Its ok,  they can go for a ride with me. Pick me up. Now.. Ummy.(that's me) Now.    nownownownownow.  I wanna see."
  Interviewer: Boy, you're cranky., aren't you? (picks up Feisty
pants)
  FP:"No, I'm  good now. I can see. Where's me?"
  I: It's just words.  We can add a picture if you like.
  FP: "Yep, do it. go" (Go is an all purpose word for FP, in this case  meaning do it NOW)
  I: What do you like to do?
  FP: " I like bike rides.  <gives look>  I like music. I like Derr Who (Dr. Who). I like art. <stomps foot for emphasis.>"
   I: Is there anything else you would like to tell people about disabled kids? < Feisty Pants picks up phone>And please leave the phone alone.
   FP:" We're smarter than you think.  Where's Goo? (That's her dad) <throws phone on floor> Goo, you, now, nownownownow.
 
And with that, Feisty Pants made a grand exit.
 

Wednesday, October 2, 2013

A little perspctive from the back side of the chair

           We all get a little wonky around disabled kids.   Mostly, in good ways. We want to help or be friendly, but don't know what to say or do.  Even other parents of disabled kids. Personally,  I'm terrible- really.   I get so focused on what I am doing that I wouldn't notice a full grown t-rex walking down my sidewalk. Or that I just ran over your foot with FP's wheelchair.  Or that the other parents don't always get why I am staring at their kid's equipment. ( I am always on the hunt for a better equipment for my kid. So, what I am doing is trying to find a logo or brand name to go home and google.  I am really NOT some durable medical equipment creeper, I promise.)
           But, anyways, lots of people want to help but really don't know what they can do.  So I thought maybe a little perspective from the back end of the wheelchair could help.  
            First of all, go ahead ask questions.  Just try to realize what you sound like.   Think like a kid. SERIOUSLY.  Kids say, "Why is she in a wheelchair?"  Or "Why can't you walk?"  Or "what's that thing?" whilst pointing at a piece of equipment.  Simple, direct questions that automatically break the ice and let Feisty Pants speak for herself.  They're all like miniature Zen philosophers with big open minds and hearts. It's very cool and naturally inclusive.  Adults say, "Poor thing. What's wrong with her?"  Nothing, Feisty Pants is a big bottle of awesome sauce who happens to be disabled. What the hell is wrong with you that you say dumb things at thirtyfive?  I actually was once leaving a hospital ER at 2 am with FP, when some complete stranger ran up grabbed both her hands and began calling upon Jesus to protect her at the top of her lungs.  Lovely sentiment. Scared the CRAP out of a six year old who doesn't like to grabbed by STRANGERS. Especially at  2 AM.  Doubly so at 2 am after spending the evening being poked and prodded with needles.
           And on a completely personal note, don't tell me you know how I feel.  Usually, NO you don't.   Until you have sat in an PICU  three hours away from home in a raging snowstorm wearing sandals (because that's the first thing you grabbed when you ran out the door) after 72 hours with no sleep, watching medical personnel do frigging CPR on your baby 2 and a half weeks before her first Christmas, YOU DON'T KNOW HOW IT FEELS.  And I don't know how it feels to prepare my child for a group home because their disability has made it impossible for me to care for them at home. Or how it feels to have a teenage kid with autism have a meltdown in public. Or how it feels to prepare a child for their inevitable death from cancer or SMA.  How those parents ever get out of bed astounds me. All we can do stand back in awe and respect.  How about we all just say "anything I can do to help?"  Chances are, if you can, some parent will  let you know. 
         Oh, and one more thing. Try to just be a nice person. Be a mensch.  We're usually underslept and overscheduled. And overstressed and underfunded. And just like everybody else, we are all just trying to muddle through best we can.  A little bit of random kindness goes a long way.  It makes ANY harried parent's day a little bit easier and it makes the kind person's day a little bit happier.   That's probably a good idea for any situation.