Wednesday, May 27, 2015

It's the Time of the Season

              It's the time of the season for heatstroke apparently.  Or whiplash, depending on the day.  One day the overnight low is 30 and I have to cover my plants.  The next day (literally!) it's 84 and humid  and we are all dying from the heat. Next week- locusts. But don't worry, at least we will have some shade from the swarm.  So while we are all digging out our a/c's and finding where the heck our flip-flops have gotten to over the winter, I thought would write a post on heat related illness.  Trust me, heat exhaustion SUUUUUCCCCKKKSS.  You hurt and everything feels awful and you throw up a lot.  At best it is miserable.  It can be very serious.  If you are disabled or elderly, it is downright dangerous.  The best way to deal with any heat related illness is to manage to avoid it in the first place.  Keep cool.  Stay hydrated.  Stay indoors when the sun is at its hottest.  Turn the darn a/c on.  Can't do that?  Hit the nearest air conditioned public place.  Window shop at the mall. Go to the movies. Head for the public library.  Or find someplace to get wet- public (or private, if you are lucky) pools.  Splash pads at your local park.  A sprinkler in the backyard.  Water will cool you down quicker than air and is always a perfect ploy for a cranky kid (or grown up for that matter).
              But, say all that didn't work and the summer has become the kryptonite to your feisty one.  What then? First, learn to tell the difference between heat exhaustion and heatstroke. You may be able to deal with heat exhaustion at home (BUT FIRST, CALL THE DOCTOR ANYWAY).  If you suspect heatstroke, get your feisty kid's tushy to the ER stat.  (or grandma or yourself) Seriously, don't muck about.  Heatstroke can be fatal.  It really is that dangerous.
Symptoms of Heat Exhaustion: thirst, weakness, headache and irritability, nausea and/or vomiting, muscle cramps. increased sweating, cool/clammy skin, elevated temperature under 104 (103 in babies)
What to do: CALL the doc.  Right away.  Then hydrate and cool.  Cool baths, cool showers, get where it's cool.  Follow the doc's advice. This is even a good excuse for Hippie Pants' favorite dinner- popsicles and ice cream sundaes.  Get cool and stay cool. Tylenol for the headache.  (Which is a bitch, trust me)
Symptoms of heatstroke: severe headache, weakness, dizziness, lethargy, rapid shallow breathing, vomiting, flushed hot dry skin, can lose consciousness, temp over 103, possible seizures, may not sweat.
So, there, now that I am done yelling at you.  Stay cool. Stay safe. Have a great summer in whatever level of Hades this heat season turns out to be.  If you get bored, swing by.  We'll invite you in for a dinner of popsicles and whatever we don't have to heat up.


Wednesday, May 20, 2015

For sale, CHEAP

          I love my kid. I truly, truly do. Forget whatever romance movie, hallmark card, valentine's day crap you learned about falling in love with your significant other/emergency contact person.  You do not know what it's like to really fall in love until you look into your child's eyes for the first time.  Feisty Pants is awesome and sly and amazing.  I even love her sister, Hippie Pants, who is funny and kind and smells good all the time. Having said that, if I don't frigging get a break from the bitching soon, I am running away from home. Or selling them at a yard sale cheap.  If you buy them both, I will throw one slightly used and dented Goo for free.
              Sigh.  So Feisty Pants is sick again. Not scarily so.  It's merely an upper respiratory infection/sinus infection/really bad cold.  She is just sick enough to be stuck at home on oxygen and antibiotics.  And mad about it. Everyone else on the entire planet is out riding their bikes.  But no, not her.  Everyone else on the entire planet is going to her cousin's most awesome birthday fete and FP has overheard her mean parents wonder if they will make it or not. Who cares if she is still on oxygen and just exactly what are they implying about a week of antibiotics and they know what that means, hmmmmmm?!?  And she is being so cooperative right now.  FP has even managed to clearly verbalize a new sentence. "I sick. Leave alone!!!"  She is even interspersing this with "Come here. Nownownownow!"  Just to show how hard she is working at communicating.  But is she getting ANY respect for all her hard work? No, just unreasonableness from those old farts. Why should she get dressed, not pull her feeding tube, not whine twelve hours straight, not sing opera at 3 am??? How dare we torture her with boredom and pants and food?!?   So what if she is sick and needs the rest, sleep is for kids who get to do things and she NEVER EVER EVER gets to do anything fun. EVER.  And her head hurts.  So please hold her.  But don't touch her because she is sick and you are all annoying right now.  Why aren't you holding her?
            Sigh, this is one of the paradoxes of disabled kids.  The determination that keeps them going through illness, disability and often pain, is the same stubbornness that makes their parents softly bang their heads against the wall.  Nothing for it really.  You just gotta learn that it is not personal, it shall too pass, soon enough,  the kid will be feeling better, happier and finding new and more exciting things to bitch about.  Until then there is always coffee, chocolate, and tequila.  On second thought, forget the tequila.  That may be part of how we ended up with these kids anyway.

Tuesday, May 12, 2015

Cranky Mom Blues

          So as I type this, we are sitting in the middle of a dentist's office watching Feisty Pants act as if she is being waterboarded.  She just loves the dentist. Goo is busy wrestling her into a good position where she is accessible to the dental assistants and yet cannot slug/pinch/kick them.  At least in theory. In reality, it's more akin to wrestling a squid, a squid that can bite, pinch, kick, thrash and screech.  I perform my usual oh so helpful task of guardian of the suction machine, holder of extra paper towels, and temporary office decoration.   This is a great dental office, so they will be kind and quick and not even complain when her aim is true.   And yet no matter how long it takes, it certainly feels like eons while she thrashes and shrieks.  
             I have not much to do, except sit here feeling unhelpful.  So I have time to think of all the things I wish the universe has but doesn't. Like changing tables for kids bigger than 35 pounds. (Go ahead try to change a kid in pull ups when they are 12 years not 12 months.  Bathroom floors are disgusting. I won't put my purse on one, let alone my kid.  FP passed getting changed on my lap 11 years ago.)   Toothpaste and fluoride treatments in flavors my kid likes. (They make vodka in whipped cream flavor.  Why not fluoride?   You can get latex gloves in banana flavor. Why not toothpaste?)  Mostly I sit around in moments like these and wish the medical profession as a whole researched cures instead of treatments.  I long for the day when there is either a stem cell treatment for CP or, at the very least,  a quick solution for the spasticity that contorts her muscles and limbs and makes her life painful on top of difficult.  I also wish for a roomba like coffee maker, that would follow me around and dispense lattes on command no matter where I am, kinda like a labrador crossed with a barista.  (We try to schedule appointments first or last thing so we give up less sleep.  This one is unbearably early.  I am so cranky I don't even like ME right now.)
              Really, I am just whiny.  It's a dentist appointment not an ER visit.  She is not even close to sick.  They are not hurting her.  Feisty Pants is merely pissed at the world and not afraid to let us know.  But some days just seem longer than others.  In a few hours, we will be home, done with this for at least six months and almost caught up with our daily routine.  But I do want those who don't travel down life's roads with a special needs kid to know that sometimes it is a wee bit tiring.  So, please, have a little mercy on us. Kindness doesn't cost a thing and saves us cranky parents a lot of bail money.

Sunday, May 10, 2015

Mother's Day

            Since it's Mothers Day, I should be writing this about my mom or some such.  But she wouldn't see this. My parents have no computer.  My father claims to be a Luddite but I'm convinced he's mostly afraid to get one in case my mother discovers Amazon. Mom takes his word for it that she doesn't want one, although I suspect she would LOVE one and love Amazon.  In Mom's defense, she is from an area so rural that where she grew up didn't have electricity until she was about 12. (We used to tease her and tell her she was from the Waltons until she pointed out that those people had light bulbs and radios.) It's probably good that she doesn't read this. I never have to worry about her being appalled by my smart mouth or bad attitude. (Thanks, Mom!)  Besides, not having the interwebs frees up a lot of time for her to have a social life with our bazillion relatives, so she is off gallivanting about Ohio at a cousin's wedding; kissing babies, hugging relatives, giving small children large amounts of candy and then handing them back to their parents all sticky and hyper.  Generally enjoying herself.    
           But now it's Mother's day, and I should be writing some ode to moms in general about how we moms are all awesome (We are.) How we moms all work so damn hard (We do.)  How being the parent of a special needs kid is astounding and humbling and we all deserve nobel prizes and/or sainthood  for sheer ultimate mommyness. (We do) (Even there, my mother has me beat- she had four kids- my sister had Down Syndrome, my older brother has spina bifida, my younger brother was a six month preemie back in 1976.  Honestly, the woman is a bit of an over achiever.)  But, she is off for the weekend and won't read this anyway so now I am stuck for an easy topic.
           So I guess, instead of writing some ultimately self congratulating "aren't all moms AWESOME?" piece (Cue that damn lego song, or better yet, don't.) maybe I should flip the coin and write a thank to my kids.  Yes, I created you.  And yes, you two girls had damn well better appreciate that and how hard I work.  But let's face it, this journey that is our crazy family wasn't exactly your idea to begin with.  So maybe once in a while, I ought to be grateful for the two of you.  So to that end... 
            Thank you, Hippie Pants. You are amazing and kind have the most generous heart I have ever seen in a human being.  You would bring home strays when you were two (animal, human, reptile, you didn't care) and you always said the same thing.  "He's so hungry, Mommy, can we feed him?"  You stopped eating meat when you were six ("That's just MEAN.") You have such a generous spirit that you are even a good sport when your sister comes up with a clever burn. Or blames you for her crimes.  Not everyone would laugh if their sister lied all the time and said you did anything that happened that was naughty or told everybody that she knew they were adopted because their sister is such a freak.  Or laugh even harder at said kid sister's utter dismay when she finds out that (horrors!) you really are blood siblings.  Your spirit really is comprised of glitter and rainbows.  Don't let the world muddy it.  If you keep sparkling, it will shine back.
               And thank you, Feisty Pants.  Thank you teaching me that stubbornness really is a virtue.  And that defiance is an art form.  That cheerfulness and love can be the most fun way to give the Universe the finger.  That you can truly look daunting challenges right square in the eye and moon them and still look utterly adorable whilst doing so.  Your incredible joy at life and independence is contagious and gets my cranky, tired ass out of bed every morning.  I sometimes wonder with you whether I am raising Professor X or Professor Moriarty , but either way the ride will NOT be boring.  Thanking for teaching me that joy shines from within not without.

             So, thanks to you. I love you both.  Now, what did you get me???

Saturday, May 2, 2015

Dancing as fast as I can

           So, when we last left our intrepid feisty adventurers, Penelope, having gone for a walk, was lying unconscious at the edge of a field.  Well, sort of.  If Penelope is the name of our computer. And, if "unconscious" means the main hard drive of said computer died.  We only have 37 hard drives in the darn thing. (Fine, five hard drives, but that's still a ridiculous number...)  And, of course it had to be the one that held our operating system.  And, naturally, the only other one big enough has all our music which we would have had to give up to use. We have hundreds , if not a few thousand, of songs.  Soooo either we had to give up the computer that has our music while we ordered a new hard drive or just tank our entire music collection.  Feisty Pants was not amused.  Or willing to give up music for the week it took to get everything up and running again. Or willing to not complain nonstop about our horrible new version of abusing her with boredom.
          Not that I blamed her. When you cannot count on your body to cooperate  or vision to work at any given moment, something constant like her hearing becomes incredibly important.  We all respond to music, but Feisty Pants seems to have an incredible connection with song.  The science behind it is pretty solid and amazing too.  There are astounding links between music education and math scores.  Between music and memory. Between music and brain development.  (You can look it up, we will wait here...)   In fact, we do a type of therapy called The Listening  Program. Designed by a neurologist, it consists of classical music with subtle  undertones designed specifically to provide deep brain stimulation.  It has made a big difference for her.  We really can tell if we miss a day or two.  Walking and moving around provides a LOT of brain stimulation.  So does stereoscopic vision.  When those two things are absent from your life, you really crave brain stimulation.  Like, all the time.  ALL.THE.TIME.   A few days without enough stim and Feisty Pants is grumpy and moody.  A couple more days on top of that and sleep is elusive.  Which means its now elusive for us parents, too.  And we get so much to begin with.

          But, we are back, and up and running again. The music is playing again so FP has stopped bitching nonstop. And I can finally stop wracking my brains to keep entertaining her.  I have finally (almost) caught up on my emails. Maybe now that the music's playing again, I won't have to dance so damn fast.

Friday, April 17, 2015

Maybe we should be paying more attention to this

Thanks to MommyGreenest for the heads up on this!

Thursday, April 9, 2015

To Be or Not to be (Tested)

                Well, Easter has come and gone.  The sugar/chocolate/ham express has made its way too big, way too full of sugar and junk delivery.  The children have been shaken out of their Willy Wonka stupor, been dusted off and sent back to school and work and lives.  We are about to rush headlong into warmer weather (bleah) and (GASP) IEP season. For the uninitiated, that's when schools and parents hunker down like disgruntled warriors at a peace treaty signing, umm err, I mean sit down and discuss what goals need to be met in the upcoming year.  Not that I am expecting any major skirmishes there.    Feisty Pants is in a good placement for her.  But disabled kids bring out the wonky in everyone and it's always a bit frazzling to have to compromise like a real grown up when it comes to your kid's future.  And, I, apparently, am a giant pain in the ass, um er, a strong advocate for my kid.  Seriously, I have been told that has been written in some of FP's medical records. ("Mother is a strong, vocal advocate."  I guess bitch didn't seem like real medical terminology. )    
                So, no, I am really not expecting any battles.  We are all on the same side here and I am "strong and vocal" when I have to be.  No, my dilemma this year is a little more esoteric.  The test or not to test.  I am very unsure about the new common core testing.  We do need some testing you see.  We need to know our schools are working for our kids.  We especially need to know how the disabled students are faring.  Their education and their futures depend on good goals in their IEP's.  BUT this new emphasis on testing in New York (where we live) seems out of line with how far it should be taken.  We seem to be moving from testing for educational purposes to educating for testing purposes.  And Governor Cuomo's desire to slash public education and replace it with more charter schools is abhorrent.  Trust me on this, all charter schools do is create more of a caste system where the disabled, the different, the poor, the minorities are left out in record numbers. It is the opposite of the American ideals of equality and opportunity for all.  And my baby, my youngest child, will be the first to take the hit.  Profit has no business in certain areas of life.  We shouldn't sell our vote.  We shouldn't sell our organs.  We shouldn't sell slaves.  We shouldn't sell dangerous drugs. Even though it all would be immensely proftable. We know this already. Yet then why do we think we should sell our children's futures to the lowest bidders?  Which is why many parents are opting out of the testing as a way to show that we will not have this dismantling our of children's schools and futures.  They are doing so to show the powers that be in Albany that we all are truly displeased with the idea of ruining public education.
                But.  But.  But -Feisty Pants needs to have good tests so we know where she is progressing and where we need to focus our efforts with her.  Education is so important for all children.  It is more important for my kid who already has a million strikes against her.  But I fear these tests my kid so needs to ensure her education is sound will be the very weapon used to dismantle her entire future.