Sunday, November 29, 2015


        Not that I am lazy or anything, honest.  But it has been forever since my last post.  But hey, holidays.  First Feisty Pants has been home for an eon now.  (Just ask her, she has been bored FOREVER now.) Actually since Tuesday, but that's a million years in bored preteen time. And, since we didn't go out this Thanksgiving (My first choice, but the universe did not want to play turkey ball with me) I ended up cooking for what seemed two centuries. All of which meant I fell behind on all the other crap I gotta deal with around this zoo (and the city frowns on burning dirty laundry instead of washing it, go figure) so I am behind here too.  Sorry if I let anybody down (I am just soo sure this is the highlight of your existence.  No, no, don't answer, I'll just take the sound of crickets as an affirmative.)
          Anywhoo, since it is Thanksgiving I thought perhaps I would list out some things I am thankful for. Really I should do this more often, but, in my defense I forget to do so. Plus apparently I am a slightly reprehensible human being who needs an occasional reminder to be grateful.  (I don't want to hear it, you guys sometimes suck too, I SEE your facebook posts... just saying...)
To that end:
 Thank you, Universe for the following:
1) The news that coffee can help you live longer.  (Have you seen that study?!? go look it up, I'll wait)  Holy Cannolis, I have never felt more like a highlander in my life.  We live on coffee. Cut me and I bleed starbucks.  If you see wild lightning coming from my kitchen, no worries. I have just slain Goo in ritual combat. There can be only one.
2) Jim Henson movies- I do not know what tv executive has decided to spring Jim Henson on us this Thanksgiving, but may the gods bless his fuzzy little heart.  The ONLY time Feisty Pants has not complained this last week is when she had the Macy's Parade, Labyrinth, a Muppet movie, and Turkey Hollow to keep her amazed. It's the only time I was able to get anything done around here. I may have to stalk and kidnap Kermit and the gang.
3) People in Binghamton named Rhonda. - seriously.  I never met anyone named Rhonda before I lived here.  Now, I have met three.  All have been in the medical profession (two nurses and an occupational therapist).  All are really good at their jobs.  And all three have remarkably been able to understand Feisty Pants' garbled speech and actually listened to her, much to her delight.  And their listening has made their care of her better, much to Goo's and my delight.
4)  It's finally starting to get cold.  Not cold enough for me (I am the one in my backyard doing a snow ritual) but cold enough at night to start killing mildew.  If this keeps up, we might make through the holidays intact. Santa could bring me the gift of no antibiotics.  That would truly be a holiday miracle.
How about you? What are you thankful for this delightful Holiday season?


Wednesday, November 18, 2015

Waiting Rooms

             Sigh... as I sit here, writing this, I am waiting for a taxi to take us to Syracuse for an ent appointment for Feisty Pants. A taxi that is now 30 minutes late. It takes an hour and half to get there. We have an appointment in an hour and 15 mins.  This kind of crap makes me crazy. I hate waiting. I especially hate waiting times that are thrust upon me. And.... it's finally here.
             So.  Now it's about four hours later.  Four hours, one very exciting cab ride (We actually got there just in the nick of time), a doctor's appointment and a long ride home later.   The doctor's appointment took all of ten minutes. The doctor never even actually touched FP or anything.  Not that it went badly.  We went for a consultation about Botox. Which we are going to get done.  In three weeks. Which is fab. They will botox her salivary glands and that will help to control her secretions and hopefully lead to less pneumonias.  (This has worked in the past.)  But this initial consult could have been done over the phone.  Or better yet, if the doc wanted to lay eyes on her via Skype.  Then we wouldn't have had to drive three hours for a ten minute meeting.  And Feisty Pants would not have cried all the way there. (Botox shots for CP and salivary problems are painful and she very clearly remembers getting them in the past.)  Most of all, we would not have had to watch Goo, whose nickname should be NeuroticallyPrompt Pants, seethe all the way there because he thought we were going to be late.
          To make matters even more fun here in Feisty Pants Land, we have another appointment that will go about the same way on Thursday.  FP is having her G-tube changed.  It's a REALLY simple procedure.  Painless and takes all of about a minute.  But the appointment takes FOREVER.  First we get to the hospital GI lab, full of grumpy older people who had to fast to be there and who do NOT want to watch cartoons and don't appreciate FP complaining nonstop that she does.  While I fill out about 30 minutes worth of paperwork.  Then a nurse has to go over every question I just answered like I am a spy being debriefed.  (What exactly is going on these labs I don't know about?!?)   THEN we go back to a procedure room where Feisty Pants finally gets to watch good stuff  but then Goo is now complaining about the wait and when can we go find coffee anyway.  Then the doc finally strolls in as if he has been waiting for us, takes approximately 90 seconds to do the tube change and strolls on outta there like he just dropped the mike.  While we wait for the discharge paperwork.
          Much like people who are not poor do not realize how expensive it is to be poor (poor people get charged more for EVERYTHING while being told it's their fault) extremely busy people find their lives consumed by stupid time wasters. I know we always seem like we are in a giant hurry.  That's because we are. We sleep in shifts and have to arrange everything around FP's eating and med schedule.  So if we seem a little manic it's because we are trying to get so much stuff done in very small windows of opportunity.  We are actually trying to be very patient with you.  So how about you all show a little love back and get off the stick, please?

Tuesday, November 10, 2015


               Ahhh November.  You are such a fickle bitch.  First you come on all strong and wonderful.  You entice me with your dark chilly evenings that hint at snows to come.  You bring gorgeous starry moonlight nights unencumbered by loud, annoying people or worse, loud, annoying mosquitoes. You arrive with a mysterious barrenness and brisk winds that speak of winter and tell us it's time to batten down the hatches and remind us why we love our couches and spouses.  (Hint- they are both fuzzy and warm.) You smell like the earth has turned into one giant pumpkin spice latte.   And just when I am all infatuated with your dark mysterious looks and smoldering gazes with hints of frost, you drop a crap ton of leaves on my backyard, bring the temperature up into the 60's and grow leaf mold like it's your job to get my kid all sick and snotty.  Thanks.  Bitch.
                I shouldn't complain too loudly. I really shouldn't.  We have some crappy Novembers where Feisty Pants was in the hospital, sometimes for the whole month. I have had Thanksgiving dinner in more hospitals and Ronald McDonald Houses than I care to think about.  This a minor illness.  A simple sinus infection (FP is prone to those) due to her allergies caused by the (you guessed it) leaf mold.   It is just that I adore cold weather and now that it is finally my turn to wax rhapsodic about the outdoors, my kid has to go and get sick and now all I can obsess about is those Novembers when we were crashing in hospitals and sitting eating dinners by a sedated kid on a ventilator and worried about her and about exactly what the teens at home were up to without us to supervise.  (The only thing scarier than coming home to a wrecked house when you've been out of town while a teen was home is coming home to a spotless house when you have been out of town and a teen was home.)
                Nothing to do about it really, but give myself the old "it's just a fancy cold" pep talk  and keep on moving.  Feisty Pants only missed one day of school.  She still got to go to a party. (I wanted to keep her home but she threatened to go nuclear if she was stuck with her boring old parents one more day.  She just could not even.)  The antibiotics are kicking in so I think we shall all survive with our minds intact. If this is as bad as my November gets I will take it and be very grateful.

                But why, oh why, does it seem that all the alluring beautiful ones are just trouble waiting to happen?

Sunday, November 1, 2015


      Oh, but it has been a lovely weekend.  Often, when you have a feisty one (or even if you don't) life gets so hectic you forget to take joy in the absence of a catastrophe.  This Halloween was awesome.  Feisty Pants went as Wednesday Addams.  Goo was a low rent Uncle Fester.  (He let us put make up on him, bless his whining little heart, and discovered he is not really a fan of wearing makeup.)   Hippie Pants was a beautiful Morticia.  And Dinkypants was totes adorbs as Pubert.  We had a blast making Jack O' lanterns and  turning tp rolls into scary eyes looming at you in the darkness.   (Take an empty tp roll, cut eyes out and insert glow stick -in the dark it looks just like eyes staring you.)  It was dark, and chilly, perfect spooky weather. The only minor incident was Dinkypants found where we had hidden the candy bowl and had a wee bit of a sugar high. (Am I mean thinking it was funny watching his mother try to corral him?) We love Halloween here.  It's the only day of the year we come close to passing as normal.  We even fun watching the live exorcism on tv on Friday, although FP was disappointed that nothing burst into flames when the priest was sprinkling the holy water.   Best of all, the night coincided with the end of daylight savings (NOW that's a demonic scourge upon humanity.) so an extra hour of sleep (cue sounds of angels singing and contented sighing.)
       But now it's November, and we have a few weeks until the Holiday Express comes roaring back with its chaos and food and crazy relatives and gift buying, making, and giving.   Not that the holidays aren't a beautiful form of chaos and love, but chaos nonetheless. A few weeks of simply raking leaves and battening down the hatches for winter.  A few weeks of quiet dark evenings and blissfully boring weekends.  Of eating up all the Halloween goodies and arguing over who is bringing the pie for Thanksgiving.  These quiet down times are what sustains anyone who has to live with incipient chaos like a disabled family member (or anything that brings  the uncertain into one's life.)  When you live life rolling with its punches, you learn that you have to savor the quiet moments when you get to just stand still for a minute in between one crisis and the next...
       And, so , we are going to enjoy the hell out of this lovely in between time.  No one is sick at the moment.  No grand death march of appointments for a few weeks.  No trying to make everybody fit in the schedule or please every crazy relative for at least a few weeks.  Just quiet blissful boring November. We will argue over football and watch tv and pretend to be normal. I will listen to my loony family dig out Christmas carols early to annoy me. Feisty Pants will have a blast nagging her father about "Kistmas Lights!!!"  I have to be honest here, Halloween is starting to feel a lot like Christmas to me.

Monday, October 26, 2015

Sliding into home

         Whew... it has a crazy couple of weeks.  First we had a buttload of appointments.  Feisty Pants has a severe scoliosis and may be having surgery after the first of the year. So there were consultations and x-rays and all day long appointments to deal with.   In another city.   On the Goo's birthday.  For which the universe gifted him 48 hours without any sleep. Then there was the flu shot parade.  The flu sucks worse than the shot so off we all go every fall. Three shots, three appointments. Not a biggie but that's three day's worth of transportation and time to arrange.  Except this time, Feisty Pants -who has fluctuating muscle tone due to her CP (read that as her muscles will loosen or tighten up almost at random) tightened her legs up at random just as she was getting the shot. So it hurt.  And she cried for the next twelve hours straight.  All the way home from the doctors.  All the way to the grocery store.  All the way home.  All the way until she fell asleep that night.  If CP were a person, I would have punched it in the face.  
        Then, because it is not crazy enough, one day last week the brakes on FP's nurse's car went out.  The universe had better NOT mess with that lady. She is amazing with my child and deserves roses and chocolates and cute boyfriends NOT bad brakes on her NEW car. Or heavens forfend, an accident. Oh and Hippie Pants did not want to be left out of the chaos, so she has some awful stomach bug and/or ebola and/or the plague. We love her but she is in exile right now and will not be out of banishment until she behaves and stops being contagious.    

            I shouldn't bitch .  I really shouldn't.  These are all minor troubles and the Bataan Death March of our last couple of weeks seems to be over.  (And it sooooo unlike me to complain, I know. I know. I'm such a saint.) It's just that when you seem to live on the raw edge of your patience and nerves, it never takes much to upset the apple cart and overwhelm you.  We sleep in shifts, are sleep deprived on the best of days, and never seem to have to time to finish the everyday stuff, let alone the crazy stuff that life hands out to us all. I do not know how anyone with two feisty kids can manage it. I have one feisty one and am usually lucky to be able to find my ass with both hands and a flashlight. But, I know the crazy won't last forever.  The hectic pace of the last couple of weeks is slowing down.  The brakes were fixed. Goo got some sleep.  Tummy bugs, like all things, will pass.  Halloween will come on the weekend, so no squeezing it in around school and therapies.  Best of all, we will be turning back the clocks soon so I will have an extra hour in my weekend. (Yay, sleep!) The first two weeks of November never looked so blissfully uneventful. Our October has been like running that last mile of a marathon or hitting a triple in the last inning of a game.  Sliding into the home plate of November has rarely looked so good. 

Saturday, October 10, 2015

Restraint and Seclusion (because I cannot use swear words as a title)

      This one may be a bit hard to write.  Not that I can't prattle on about damn near anything, but because it's hard to write about this subject with resorting to swear words and banging my head off the keyboard.  Both of which actions make the spellcheck/autocorrect feature lose it's little mind.  (Last time it had to be talked down from a ledge. It doesn't appreciate the way I spell swear words and guttural shrieks.)  But I want to talk about restraint and seclusion in schools. 
       Disabled children can be stubborn.  (Ok, let's be honest they make stubborn into an art form. They have to or they wouldn't survive and thrive.)   That, along with trouble in communication, often makes for sometimes erratic and uncontrolled behavior.  Having said that.  THESE ARE CHILDREN FOR F'S SAKE. We expect children in general to behave better than adults (When is the last time you were given a time out for swearing or being cross or acting selfishly, hmm????)  We seem to expect disabled children to be passive little tiny tim's with never a bad moment or cross word for anyone.  And frankly, we are all jerks for doing so.   So why oh why do we have these god awful restraint and seclusion policies for disabled children in schools?   I can understand a meltdown is hard to deal with but guess what folks, that's why we adults have all the power and money and cooler toys and no bedtimes.  We deal with the hard stuff.  I could possibly see removing a child until the meltdown is over (which by the way is NOT a temper tantrum, learn the difference or just shut up already.  You're not cool and adult when you spout mean nonsense.  You're just mean, Madame Umbridge, so pipe down.)  Disabled children are more often punished and more harshly punished than their more typical peers for the SAME infractions.  It's not about them.  It's about we adults being cruel.  So to that end New York State is investigating the use of restraint and seclusion in schools.  The following is from my local Independent Living Center's  newsletter. Much thanks to STIC for the permission to use! 
       From AccessAbility, the newsletter of the Southern Tier Independence Center :
Disability Rights New York, the official New York State Protection and Advocacy Agency for people with disabilities is investigating inappropriate use of restraints or time out rooms in schools across the state. They are seeking information on recent cases: those that occurred during the previous school year or earlier this fall. 
    If you report a case DRNY, they will help you to decide "next steps which may include accessing the school and student records or filing a complaint with NYSED, or a range of other options"  They will protect your identity if that's what you want.
     Julie Keegan, Surpervising Attorney for the developmental disabilities P&A program at DRNY, said, " Assessing what's happening or not happening in actual cases provides an important context for the survey information we collected last fall (we had over 300 responses!). I would really appreciate you help in this effort. It will make a big difference in this very problematic area of behavior invention."
Contact Julie at:
(518)432-7861 voice
(518)512-3448 TTY
(800) 993-8982 toll free
(518) 427-6561 FAX

Sunday, October 4, 2015

YAY! October!

          So, yay, it's October!  And it is starting to get chilly!  And all the 'pooky shows are back to keep Feisty Pants happy. And she has decided on a relatively easy Halloween costume that won't kill us trying to make or buy. (Don't ask, it's a secret for now she says.)  So you'll have to excuse me while I snort a few lines of apple pie and pumpkin spice while digging out my ugly comfy boots and yummy sweaters and flannels.  The whole world feels like a comforting cup of chai tea right now.  As the lovely writer once put it, "I'm so glad I live in a world where there are Octobers."  And Feisty Pants isn't even too sick yet, in spite of the leaf mold beginning to burgeon and the goldenrod blooming across the street from our house.  The kids have been back to school long enough to trade germs. She has a sinus infection, but that's nothing for fall.  So the fact that FP has a minor infection and is on antibiotics really isn't that big of deal.
        So, in order to celebrate, here are some fun, octoberish things to do to while away a fun chilly spooky evening.
1) Pumpkin Stencils- what Halloween is complete without a jack'o'lantern or three or a dozen?  Here are some great sites to find a stencil.  If your kids are too little or just not able to carve, use the stencils as a paint/marker stencil.  You can even break out the old Mr. Potatohead toy and use the parts to decorate.  OH and by the way, have you guys seen the teal pumpkins yet?  Pumpkins painted teal and placed with your other jack'o'lanterns are meant to symbolize that people inside have some non-food type treats for little kids with sensory issues or food allergies.  Seems like a cool way to signal inclusion.

Alternatively, you can just google the phrase"images + pumpkin stencils" and print whatever suits your fancy.

2) Fun fall crafts:  This site has loads of cute, fun craft ideas for kids.  Best of all, they are cheap and cheerful.  Have at it and have fun.

So there you go.:) I hope to follow this up with some fun Halloween treats but if this month stays this fabulous, we'll probably be in the backyard monkeying around with leaves, so no promises.  Happy Autumn!!!