Sunday, July 26, 2015

Howling at the Moon

           So, originally I wanted to make this about Feisty Pants' fabulous day off  (eat your heart out Ferris) wherein she went to the movies and shopping and had a blast.  (Shout out to the amazing adults who made that happen!)  Then I thought I would add a few more ideas of how to slay the beast of brain drain.  (I am still researching ideas and will come back to that, promise.)  But then I saw something that struck a nerve and now THAT is what I want this post to be about.  I saw two somethings actually, and they both pissed me off to no end.  I want to talk about the obnoxious, pervasive, hideous, soft bigotry towards the disabled.
          The first something was a post on Facebook by a family that bills itself as the Hartley Hooligans.  They are a family with two daughters with MSG and the Mom's posts are funny and awesome and bad-ass.  If you don't follow them, you should.  The latest was a post on the occasion of her eldest daughter's fourteenth birthday in which she basically told the doctor who dismissed her then infant daughter's potential and life to go suck it.  I literally applauded the post. (She couldn't hear me but so what.) What then followed in the comments was other parents of feisty ones discussing their experiences of doctors who gently said horrible, dickish things for their own good.  I even added mine.  We had reports of doctors who advised "letting nature take its course"  and "concentrate on healthy babies".  I can personally attest to "it is acceptable to turn off the life support if you wish"  and (my fave) "You need to know you are probably taking her home to die".  Oh, and let's not forget "I am sure you are ok with anything that would stunt her growth" (uhhhh, no I am not ok with that. Jerk.)   Here's a hint, dear physicians.  You think you are being careful and non-judgmental.  You are not.  THESE ARE DICK MOVES.   WHAT YOU ARE REALLY SAYING IS THAT THESE DISABLED HUMAN BEINGS ARE NOT WORTH THE EXTRA MEASURES OF EXPENSIVE CARE. If ANY human is not worth it than NO human is worth it.  How dare you say otherwise, especially when it comes to our disabled children?!?  Whom, exactly, are you saving the expensive care for, hmmmmmm?????  Someone who has something to offer other people? Why do you assume my child does not have such potential????  Who the eff are you to make that judgement anyway???  And, might I ask, why oh why would you feel the need to give us dire predictions?  Do you think we are foolish and not capable of understanding the seriousness of the situation?  Or is it just that we are not freaking out and wringing our hands so you don't think we are truly scared enough?  Must we be a voice for your fears to make YOU feel better somehow?  
             The second thing that made  me grow fangs and howl at the moon this week was some network's new show Tut.  (About Tutankhamen) I am sure it's simply a soap opera, probably riddled with typical fallacies (cue the old canard of artistic license).  But here's the thing, in the ads he looks pretty and physically perfect.  Tut wasn't.  Tut was disabled.  He had a genetic condition causing a club foot and more than likely an intellectual disability.  He had to walk with a cane.  Dozens were found in his tomb. He would have had serious back problems.  And yet he ruled.   And so did Julius Caesar, who had a seizure disorder.  Michelangelo, Isaac Newton and  (probably) Thomas Jefferson all had Aspergers.  Nicola Tesla had severe OCD.  Homer was blind.  Helen Keller was deaf and blind.  Franklin Roosevelt was paraplegic.  Lord Byron had a club foot. John Nash had schizophrenia. John Milton was blind.  Monet's fading eyesight made his paintings more unique as he aged. Beethoven wrote the Ode to Joy as he went deaf. I could do this all day but I bet you get my point.  Every single one of these people made amazing contributions to art, history, science, literature  in spite of, or even BECAUSE of their disabilities.   And yet we whitewash disability right out of our history.  WHY?  We do it because then we can look at the disabled and dismiss them with pity and fool ourselves into thinking that that is NOT prejudice.  That it's ok to not make the efforts needed educationally, medically, financially to include them in society. That we are not total dicks for doing so.   We cripple our own souls so we can not look at other people as equals because they are disabled. This is evil.  As a species, we should hang our heads in shame.


Saturday, July 18, 2015

Staving off the beast of boredom

      Feisty Pants is off at the movies and doing some shopping. Having a blast without those annoying parents to tell her what to do, or worse, what NOT to do.  I hope she is having a great time and not doing heroin or picking up fast boys or doing tequila shots.  You never know, she went with her teacher and nurse for the outing. (A dedicated special ed teacher and a private duty nurse?  Sounds like a wild bunch to me.)  But I thought I would take advantage of the relative quiet and look up some things for her to do when the next dead zone hits.  The next one at the end of the summer session of school is three weeks this year. Usually Feisty Pants is bored stiff by the end of the fourth day.  By the end of two weeks she is certain we are trying to kill her with boredom.   Joyously, I have three weeks to fill.
                   So, to that end these next couple of posts or so will be about things you can do to hopefully entertain and provide mental stimulation to any bored kid.   I haven't managed to get these organized by age or activity this time.  Mostly because it's hot and we are all cranky.  Besides rules are for squares and mean old fart parents or so says FP.  So, eff it, here they are, in no particular order.  And if you have any better ones, show off by sharing them in the comments.  You have nothing to lose but your kid's eyerolls and whines of "but there's nothing to do."

Birdseed ornaments: You will need:a loaf of thick stale bread (think day old french bread), peanut butter, birdseed, twine. (optional: cookie cutters)
To make: Cut one inch think slices of bread. (You could be all fancy schmancy and use the cookie cutter to shape them)  Spread with peanut butter.  Sprinkle very liberally with birdseed.  Chill until firm.  Flip over and repeat on back side.  Hang with twine from trees.

Easy paper lantern- you can do these two ways, simply make the paper lantern and use as a decoration OR go all the way and make them actually light up.  You will want adult (or at least, older kids) to supervise that.
You will need: Construction paper or thick gift wrap about the same size, glue, scissors.  (Stop there if you want the really easy version) empty tuna or cat food cans (Need I say clean?) battery powered tea lights.
To make: Fold the paper in half length wise and crease.  While folded, cut slits from the center to about an inch from the edge.  Make the slits about an inch apart. Unfold paper and glue short end together, forming a tube.  Glue the bottom of  the tube to the can.  (So the can forms the bottom of the lantern)   Glue another strip of paper (1/2 inch wide by six inches long) to the top for a handle.  Drop in a tea light to light.

Summer snow- This one is messy so of course the kids will like it.
You will need: Baking soda, shaving cream. BIG bowl or bucket.
To make: Empty can of shaving cream into bowl.  Add about 2 cups of baking soda.  Stir in slowly until you get a consistency you like.  Take outside and annoy the neighborhood with snowballs.  (You're welcome neighbors! )

Saturday, July 11, 2015

Back to Life

         There's an old Soul II Soul song that starts out, "Back to life, back to reality..."  It kind of sets the tone for the week.  Feisty Pants' summer session of school has started.  The therapies are back up and running.  And although we are busy, we are still getting more sleep than we did during the break.  And even though it is frigging summer (ick ick ick) and way too summery for my liking, things seem to be settling back into our school routine rather nicely.
          Feisty Pants is now sleeping better (THANK YOU THERAPY).  Complaining less of how boring and awful her parents are.  There are TWO cute boys in her class this summer.  That's not even counting her "bus boyfriend".   ('Cause when you're that adorable, that's how you roll.)  She even has plans to go see the Minions movie without her pia parents - the hallmark of a truly entertaining outing.  "'Out you, Mom, 'out YOU!"  meaning without me.  As I am the most awful, smelly albatross of a parent to ever hang around making my children's lives a misery.  (I am incorrigible that way.)  She is even showing off new verbal skills this week.   If, of course, you take a new swear word as a verbal skill.  And I am.  We did explain swear words are for speech therapists because they appreciate the effort it takes but since she only swore at her father, and she was repeating a word he had just said, I let it slide.  (Only giving her a quarter for making me laugh counts as letting it slide, right?)
          So far, the only minor hiccup was that she got sent home early on Thursday due to a power outage at her school.   Which she liked in theory.   Until she realized it meant being home with me.  She was little disappointed though, when the NYSEG guys said a transformer blew and she missed it.   I mean really, what's the point of something blowing if you don't get to watch it blow?  Feisty Pants said it was verrrrrryyyyy borrrrring.  She did not get to see anything blow up at all. Just a bunch of guys working.  They weren't even cute in her book, just old.  The summer session is supposed to be the fun one.  What the heck.  They could at least let her see something blow up.

           Ahh well, but now it's Saturday.  And she hasn't complained yet today of terminal ennui.  We even found Hocus Pocus on tv, so she is happily ensconced in witches and zombies.  (My kids due tend to skew more towards Wednesday Addams than Barbie.) So I get to have five minutes to try to finish this.  Maybe there is something to be said for simply enjoying life on a lazy July afternoon. 

Wednesday, July 1, 2015

The Dead Zone

            We are in the dead zone at the moment.  The regular school year is over.  Summer school doesn't start til next week. Kids who are disabled often go to school year round, Feisty Pants included. ( A great opportunity I think should be offered to most kids.)  So, since we are in the summer doldrums, we do what most other parents of feisty ones do and try to cram in all our appointments and errands and what-not into these two weeks or the other three week break at the end of summer.   To that end, today was our second trip to Syracuse this week.  A colossal waste of time, if you ask me, but the Universe did not ask.  So we crawled out of our comfy house waaay too early and went to hear one more doctor look worried and try not to say she did not have a frigging clue what to tell me. 
             Sigh, it's so frustrating.  For the doctors, for Feisty Pants, and for cranky parents who, frankly, would rather NOT be shlepping to freaking Timbuktu for no damn good reason.  I don't mind the schlepping, if it produces results.  We used to take Feisty Pants to Philly twice a year.  It took a whole week, no one got any real sleep.  (Try to imagine your entire family, sleeping and working in shifts trying to live in ONE room for a week) BUT.  It did mean that FP got the coordinated care she needed and did NOT end up in the hospital for about six months.  And then we did the trip again.  But, New York, who seems to be trying to starve the care of the disabled, will not let us take her to Philly anymore.  I am NOT kidding.  Early Intervention and specialty care are literally being slowly starved of funds.  Those involved in making the decision to do that while they trumpet New York's tax breaks  and budget surpluses on tv while claiming poverty when it comes to schools and health care for the disabled deserve a special place in hell.  And it does NOT make any good sense money wise.  It was cheaper to take her to Philly twice a year than it is to pay for ONE hospital stay.  We are now up to three or four hospital stays a year.  They are paying for four years worth of care every year to save a few cents on the dollar on an asinine fee quibble with the right place.
             The state even recognizes that Feisty Pants does not have a lot of options.  They stated that there was ONE ( a whole whopping ONE) hospital in New York state capable of handling her care.  And we tried that hospital.  They made several recommendations but insisted on a sleep study before attempting anything with FP.  Then failed to schedule said study.  Then, when we called repeatedly, apologized and said it would be scheduled.  It wasn't. Then they stopped returning our calls altogether.  They even did NOT return a call to Feisty Pants' pediatrician when he called.  (Some professional courtesy.)  I suspect, but do not know for certain, that it's because we turned down their one recommendation that would have been very lucrative to them. 
              So, now we are stuck returning to a place that does not want to admit they can't really handle her.   But knows they cannot really.  And I know they cannot really.  And we all smile and shake hands and try to muddle through best as we can.  And they grimace and say "We really cannot provide the kind of coordinated care we would like to offer her, but we are way too small."  And the state says "continuity of coordinated care would be nice, but isn't really necessary."   Right wing pundits say, "America's health care does not need changing.  We have the best health care in the world!" 

              And I say, "What the f%*# good does having any health care system do if the people who need it are not allowed anywhere near it?!?"

Monday, June 22, 2015

And the clock strikes twelve

              I was going to make this post about Feisty Pants' review of binge watching a season of Game of Thrones (which I thought be funny) but her entire view of it was summed up in, "Not enough dragons"  so no. (And don't bitch at me, she doesn't see that well so she misses most of the stuff she shouldn't see)  Then I was going to get her to review a movie or two but she summed up Captain America as "Ok, but not as pretty as Thor," and another movie as "fine until it bored me," so now I gotta come up with something else.  Perhaps I will make this post about very effing twelve years old she is. Of course, then I have to come up with spelling out the sound of her eye rolling.
              In some ways she is still just a tiny thing.  She is officially short.  (Diagnosed with "short stature" due to the cp and repeated infections which stunted her growth.)  She is rather thin.  Cp, again.  She absolutely cute and feisty which seems to add her "aren't I just a pixie" demeanor.   Her speech is garbled and her face, while beautiful, is not always expressive to an outsider.  Which again, makes her seem younger.   But she is tough as nails.  And in some ways, a little world weary.  (How many emergency helicopters have you ridden on?  How many times has an ER doctor popped a hole in your shinbone while you watched him?)  Feisty Pants even has the dark sense of humor of someone who has been there, done that, got the stitches to prove it.   And she is most certainly twelve.  Superheroes are now judged on whether they are pretty on top of super.  Side eye is now an art form.  She was seen holding hands with a boy at school.  And another boy gave her his phone number.   Which she promptly brought home and used as a reason why she needs her own facebook account. ("Not fair.  Can't talk phone.")

               So now, we are distinctly looking down the barrel of puberty, whether we like it or not.   And whether her father is ready for another teenage girl or not.  (At least, so far, this one does not slam doors)  And just to drive the point home, today she asked her father to buy her a beer.  Those people on the tv ad were dancing on a beach and they looked like they were having fun.  When told NO, she said she would simply ask someone else to do it, because summers are made for parties.  There is no finer example of  an incredible combination of naivete and too cool for the universe diva-tude as a twelve year old girl.  And now Feisty Pants has got in spades.  May the Universe have mercy on us all.

Monday, June 15, 2015


           Okies, people.  So I was writing about the heat.  (It is too writing and NOT whining, shut up.)  But then we were rudely interrupted by a lung infection.  And then my whining about that. But now I am done digressing.  So, since no matter how much I hope and wish, winter is not coming back for like, forever, I figured I just give in and look up some yummy popsicle recipes online.  I refuse to turn my oven on if it's over 80.  Some days it's even too hot to grill.  So how does one load healthy food into the fam without living on yogurt and salads? I could live on them but the rest of the inmates here seem to think they need something different after a few days of "but THIS salad is completely different".  
            Personally, I just resort to lying. Or more precisely, to neglecting to tell them exactly how healthy the "junk" food I have "compromised" on really is.  (Fink on me and you will all be on my list) I have no regrets either.  They think they are having a dessert for dinner.  I did not have to risk spontaneous human combustion.  These are actually pretty healthy considering we are having popsicles for a meal.  So here some yummy ideas for your "omg, it's too hot to even contemplate cooking" meal (or even just want a healthy snack.) You will need either a popsicle mold (You can find them everywhere this time of year.) or just use freezer safe cups. The trick with cups is to cover tightly with saran wrap and then poke the sticks in. The saran wrap will hold it up. (mostly)  You can  even use a pretzel rod for a stick if you don't any popsicle worthy sticks lying about.  You could also freeze them in small tupperware dishes and call it Italian ice.
              Basically what you will be doing is making a smoothie and turning it into a popsicle so if you have a better recipe than these, have at it. Or better yet, stick it in the comments and show off your smoothie cred.  The basic instructions are chop ingredients, mix in blender, pour into molds and freeze.  How many they make depends on your mold size.  By the way, if you can sneak some veggies, by all means do it.  I recommend starting with some carrot or cucumber.  Yummy, healthy and hard to detect.  I can no longer do that as someone here finked (You still suck for that GOO) and now they all watch me like hawks.
Chocolate Banana:  eight ounces greek yogurt (plain, vanilla, or banana would work), four ounces almond milk,  four medium bananas (the riper the better), 2 ounces nut butter (any) and two tbs cocoa powder.
Pina Colada: eight ounces greek yogurt (lemon, coconut or pineapple), four ounces pineapple juice or crushed pineapple, 2 ounces flaked coconut
Tropical Bliss: eight ounces greek yogurt (any flavor -I would recommend passionfruit), four ounces canned tropical fruit (or fresh, whatevs), four bananas
Apple Pie: eight ounces  vanilla greek yogurt, four chopped apples, 2 tsp raw honey, 1 tsp cinnamon.


Monday, June 8, 2015

And now it's raining pollen

                 So sigh, it's been a couple of weeks since I posted.   It's not due to laziness or lack of discipline, I swear. ( Seriously.  Don't listen to anything these so called people who live here say.  They are not to be trusted with their opinions at all.  Hell, they demanded to be fed daily. Like every single day.)  Actually Feisty Pants had decided to celebrate the fantastically high pollen levels around here by getting sick.  REALLY sick.  First,  she developed some sinusy, bad cold deal and was stuck at home on oxygen for a week.  Then she seemed to get better and went back to school. But she wasn't actually better.  Just plotting new and interesting ways to brew pneumonia.  So just when we thought we were all done, boom, in the hospital for a week.
                 She developed a fever Saturday morning.  So off to the doc's we went. That's a story in and of itself.  To make a long story short don't you dare act like I am the one in the wrong if don't answer your own answering service when I know you are open for urgent visits and then get all haughty when I show up and DEMAND that you see my kid. We all know that I don't have Muchausen's, Feisty Pants really is medically fragile, and frankly, the only difference between our views of my being a bitch are that I think I deserve a medal for it.  It is not my fault your answering service did not follow protocol and told me you were closed when I knew you were not. It was you or the ER and I did not think she needed the ER.  Those places are germ factories and we only go there when we have to.  We expected to be sent home with a different antibiotic and were all surprised when she was admitted.  But such is life with a feisty one.  It's always surprising in both bad and good ways.             
                But four days of IV antibiotics and three of IM antibiotics (read that as a shot in the hip) when the iv failed have put FP back on the good side of illness so we are home and back into our routine.  Back to school and therapy.  Back to being completely fed up with those boring old farts she lives with.  Mastering the art of the side eye when your annoying parents spout absolute nonsense.  Mastering the art of scoping out cute boys at school.  Discovering music that no one else has ever been cool enough to listen to no matter what they claim. (Holy Cannoli, there is a song entitled Puff the Magic DRAGON!  Who knew?) You know all the important things in life when you are twelve.
                   And here's to hoping we old farts can back to what passes for normal around here.  Catching up on cleaning and yard work that lay neglected while we were gone.  Explaining to the critters that we really are still in charge.  Catching up on sleep (please oh please oh please).  Maybe even writing a post or two.   Well, here's to hoping anyway.