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.

             

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! )

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. 

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?!?"