A Christmas Toast

       You know what's annoying about Christmas?  No, not that.  Or that either.  Or that.  Shuddup already, it's my blog.   What's annoying about Christmas are all those cutesy awful song parodies that are everywhere.  I don't mind the good ones.   Christmas is meant to be merry and sometimes merry=silly, so why not a good bit of parody or satire?  It's cheesy ones that stretch the idea thin and  sound awkward that bug me.   But after eight days of FP in the hospital.  Followed by two days of frantic prepping and shopping and packing to leave for another eight days. A five hour car ride. Followed  by DinkyPants, Hippie Pants, Feisty Pants, and Goo then getting yet another frigging tummy bug.  I am a bit frazzled.  Frazzled enough that, now, Christmas nearly being all wrapped up (snort, see what I did there?) I am in just the overtired, burnt as toast mood to truly appreciate a good (bad) parody.  So here you are, Merry Christmas.

On the twelfth day of Christmas my true love gave to me:

12  dozen cookies designed to stick to my hips (that I ate anyway) 

11 batteries needed

10 days of antibiotics

9 cousins visiting

8 days of FP's IV

7 goldfish swimming (early Christmas present for Feisty Pants)

6 goldfish survivng

5  kids hyped up on candy

4 kids who then got a tummy bug (the candy looked terrible a second time)

3 days with no sleep

2 cranky parents

1 Feisty Pants who refused to wear pants.

 

And to all a good night.  Hope your holiday found you healthy and happy.  And may all your New Years be merry and bright.

 

Wheeee?

               In case you've never had the fun vacation of a kid in the hospital, it's best describe as a roller coaster.  Or a bi-polar episode, maybe.   Lows, highs, and a bit of whiplash.  Let me illustrate the last 48 hours.

Tuesday:                       

                When I woke up this morning,  I fully expected feisty pants to be home by this afternoon.  So I didn't go in to the hospital (her father has been staying this time).  I stayed home and cleaned and tried to catch up on things so that when she got here we could have a fun evening watching whatever FP wanted. But at 10 am no doctor. Same at noon.  And 2 pm.  By five, when the doc did come in, the nurses had noticed a pattern of low sat rates and funny heart rates.   So no discharge.  And I could have blown off the house and spent the day with her. Sigh.  Instead, here I am waiting for tomorrow with only Google and WebMD to keep me company.  Now I am concerned about her brain tumor/ebola/prostate cancer. Great.

            But that's kind of the way it goes with a feisty one.  All the every day trials and tribulations seem magnified because it's more complicated juggling life when you have to add dozens of doctors appointments and medications and therapy sessions.  Then factor in physical logistics,  emotional logistics (some feisty kids find every day situations overwhelming in a myriad of ways), and, my favorite, sleep deprivation.   Now, just to be thorough, throw in all those fears that come nag at you at three am.  What if she is getting worse?  What if they want to ship her out?  What if we have to skip Christmas this year?   How much snoring and farting can an 11 month old dog do at 3 am, anyway?  (Maybe that last one is just at our house.)

 

Wednesday:

                      So after trying to keep busy and get some holiday stuff done (What day can be a complete waste if it ends with washing chocolate out your hair?) I tried to get up early and rush in to stare at my kid and worry in person.  Only to find her looking normal.  Her sick version of normal, but normal nonetheless. Sat rates still suck, but holding on the O2.  Cranky as hell, but that won't change until the say the magic word (discharge).  Heart rate down a little bit.  Still a very sick kid.  But not dangerously so.  And still willing to argue a little bit with the doctor.  (Nuh-uh, she is too ready to go. Just that no one asked HER.   And btw, owowowowowow her IV site is just KILLING her, maybe they should take it out???)   So, now I can breathe. 

                      And, that's also the way it goes with a feisty one.  Just when you're ready to face whatever.  You've girded your loins and screwed your courage to it's sticking place.  Put on your best brave face and waited for someone in scrubs to ruin your day/week/year/life.  They don't.   You catch your breath and reboot.  And get a little break in the storm.  And the day seems blissfully uneventful. And my three am demons get a little smaller and less loud.  If only I could also dampen the sleeping noises (and smells ) of Cheweverything Pants.
                          

In which the Monster finally blinks

           Which philosopher was it who said, "if stare into the abyss long enough, the abyss stares back into you"?  Prolly Nietzsche or one those fun dour ones.  I get it's mostly a poetic way to say, " stop dwelling on the negative there, Debbie Downer."  But damn, it sure feels like we've been staring into the abyss alllll weekend long.  Sigh. Feisty Pants is actually doing much better.  Better enough that they are discussing paroling her soon.  Which means she is also now better enough to complain 24/7 about being tortured and imprisoned, umm, er,  I mean hospitalized.

          So, hopefully, we will be home in time to have a somewhat organized Christmas. And find the cat, who has escaped and is sulking under our back porch because the only two humans he likes haven't been home since last week. Maybe actually finish a cookie. Or wrap a gift. My in-laws will be doing the holiday after the holiday, thank heavens, so I might actually be prepared by then. (This is, at least, the lie I am telling myself.) My folks are used to me and will just roll their eyes and think, "We'd knew she be all hurry up and never done".  Everyone else will have to roll with it if we show up in dirty sweats with half made gifts,  looking like refugees from  some very smelly disaster.  

           I used to try to still be as close as possible  to whatever passes for normal when Feisty Pants was younger.  Foolish of me.  I was tired and over stressed and just made myself ( and everyone else around me) miserable when I never met an impossible illusion of what I thought was organization.  Now, eff it.  We try to show up.  On time. And be somewhat reasonably presentable. Preferably with no weird biological substances in our hair .  Doubly preferably with no one screaming. Triply preferably with none of the screaming being aimed at me. Anything else is a fun goal but we make no promises. And anyone who does not understand is just gonna have to deal with it and/or suck it. I don't care which.  This year my Christmas gift is having her home and anything else is simply details.  So if we are too messy, too loud, too chaotic, too casual, just consider us the embodiment of Christmas present.  The children who accompanied that spirit were poor homeless waifs so we already look the part.

And the Monster looks right back...

           So I haven't posted in a week and half.  Mostly because I am Busy with a capital B, gifts and cards and baking,  but also because I was a bit lazy I think.  But today, sigh, oh today, I will have hours to post.  Mostly because I am sitting in an ER waiting for the ambulance to bring in Feisty Pants from school.  Ambulances seem quick, but there are forms to fill and sign and their top priority is getting the patient to the hospital safely, so it takes longer than you think.

            Feisty Pants seemed ok, but with a slightly runny nose, this morning.  Not unusual for her. But within an hour of getting there, her sat rate dropped and her temperature spiked.  To effing 105.  So the school called us, then 911.  We grabbed a taxi and are now sitting here in the ER waiting room doing just that. Waiting. I hate waiting. It's always so much worse in my head than in real life.  And Feisty Pants is adventure enough without my imagination/anxiety adding it's two cents. She can go from fine to omg call the paramedics in a few hours.  Today she beat that record.  Fine to oh shit in an hour  flat. I am sure she has scared the nurse and her teacher too.   They haven't seen her pull such a 180 turn before.              

            Well now it's hours later. I was interrupted by the arrival of the Feisty Pants express. And as I expected,  a very stunned nurse. She had never seen Feisty Pants pull the omg trick before.  Sigh. We have. Too many times.  Today's version was fine to fever of 105 in an hour. So far they have done the x-rays and the blood cultures.  They have filled the forms and started the IV.  Started the antibiotic and given something for pain and fever.   Then gave something to "help her relax and maybe sleep" HA. HAHAHA.  Not going to happen folks. FP hates ambulances and hospitals and medical personnel.  Right now she is not even too sure about Goo and I. And so we spent the morning listening to her complain.  About her pain. About the needles.  About the fact that we couldn't leave. Six hours later and she is still complaining.  I don't blame her one bit.  I'm ready to pull up a seat and help her sing the blues.  Her father has been awake 24 hours and is singing his own blues.  We are in a good place.  They are doing all the right things.  She will mend and the fact that she has strength to bitch nonstop is a great sign.  But I gotta be honest.  Today sucks. Watching your kid be sick and in pain never ever ever gets better.

Looking the monster right in the eye.

           So, Thanksgiving has come and gone. Two holidays and so far no hospitalization this fall.   If we make it to New Years, Chris Hardwick needs to show up and award points.  If we make to Easter with none, I want medals and a brass band.  When you have a kid with special needs you get very good at short range tactical thinking. How to fit five or six out of town appointments with specialists in into a week, max.   How to pack at three am for an out of state hospitalization (that one you learn the HARD way.)  Exactly who must be called when you disappear for a week or two so no one freaks out and thinks you're angry at them/dead/abducted by aliens.   But regular long range plans are hard for us.  They take a leap of faith you sometimes don't realize you need.  You have to learn how not to overpack for visits to relatives. (Hint, you don't need all the equipment and you can put pertinent medical info on a thumb drive now, so no paper either.)  You have to remember not every gasp or freak out on the part of others means an emergency, sometimes they just don't know what our normal looks like.  You have to realize that gosh, darn it, other doctors in other towns went to med school too and did not just go to the barber's school of small pox and leeches.  But it is hard, you know.  You watch a kid like mine with a mixture of awe and fear at all times.  It's like Feisty Pants is the toughest Faberge Egg in the bunch. She is resilient and tough and feisty in ways I can only hope to be when I grow up, and yet a cold could lead to medivac helicopters and ventilators. 

             I write all this , by the way, not to bitch or whine  (I don't care what the rest of the freak commune masquerading as my family here says. Don't listen to them.)  I write all this because I want this blog to be an honest account of what the journey is really like with a special needs kid.  It is at all times a heady mix of fun, fear, and crazy.  It's not all beer and skittles but mostly because of our reaction to the circumstances, not the circumstances themselves.  And I listed fun first for a reason.   I have learned to take my victories and joys where and when I find them and that attitude has let me relax be a better parent.

             But, the holidays are upon us.  And my two smallest budgets, time and patience, are even more taxed than usual. There are relatives to visit and presents to make and/or buy.  Cards to write.  People to see.  Lists to accomplish.  A million things I need to remember that I know I won't remember until it is too late. And now, sigh, in the last few weeks we have all battled a tummy bug and then followed that up with a cold for good measure.  There were no issues that led us to an ER or hospital stay.  But there have been so many in the past.  At exactly this time of year.  So even though, we sailed through with no problems or complications, I will spend the rest the year looking at my feisty one with a slight amount of trepidation knowing that this time, we dodged a bullet.   And it could easily be next time, that we do not.          

              

Rhythms

             So, we have managed to survive the great ebola/rabies/bubonic plague outbreak of 2014.  No one had to be hospitalized.  The couch survived. We've even managed to almost put the house back into what we claim passes for order around this zoo.  We have had to do a gazillion loads of laundry but that's only because no one would agree to my proposal of piling anything smelly in the backyard and lighting it on fire.

            Ahhh, well, time to get back into the swing of things.  Stuff yourself like a turkey day is next (wait, no...) THIS week. The pies will not bake themselves.  Nor will the Christmas presents we are making make themselves. (Trust me, I keep trying, Scanners style, but so far, no dice. Sometimes the universe just won't cooperate.) 

            Well, nothing for it but to roll up our sleeves, dig in, and get done what we have to.  There's an odd rhythm to being the parent of a disabled kid.  At least one like mine.  When you have these sudden health crises that seem to drop out of the blue and take over your life for a while, life takes on  a weird, not quite syncopated tempo.  We have spent  weeks and months in the hospital, where life is odd and the outside world seems to be on hold.  I wonder if it's what life feels like to an astronaut in space or a soldier in war.  You have your own day to day rhythms but they are different from any other part of your life.  When you get back home it feels different.  You feel out of sync for a little while.  If it's been a long stay for us, we have to almost learn a new routine.  Like a kid going back to school after the summer.   And the same brain drain seems to apply.  Don't ask me to remember little things from before Feisty Pants' last illness.  Especially if we have just returned from an in-patient stay.  I may start to remember eventually, but right now I am trying to remember the names of those pesky other people I live with.  And where I keep my clean socks.  And, especially, I am trying to solve the mystery of why I don't have any clean socks.  Exactly who is wearing them when I am not here- the dog???  And even though, we did not have to take FP to the hospital this time, we were all sick for about a week all told.  The same weird brain drain seems to have hit us this time too.
            So, let's make a deal world.  I'll remember to make all the pies and try to not bitch too loudly about cooking Thanksgiving dinner if you all ignore the fact that I probably will have no socks under my boots and my shirt's likely to be inside out.   Otherwise, I am exactly the type of meanie to throw a pie or two.

It must be the holidays!

         Well now, we have had an eventful week.  Feisty Pants had Veterans Day off, and so did Hippie Pants, so we spent the morning raking leaves and doing yard work.  Then Goo, who was on a "let's get this stuff done kick" (and who was gently reminded with a kick to his shins by FP), dragged out all our Christmas stuff out of our attic.  So we put the tree and lights up too. (You're welcome, neighbors! ) The day was long, especially for Goo, but Tuesday evening we were feeling down right cheerful and Christmasy. (Shut up, that is too a word.)

        The universe has rewarded all our hard work and bon vivance (that is also a word, so still shut up) by giving us a few days off.  As in nothing's getting done now because we all have ebola.  Or the plague. Or zombie flu. Or whatever hideous, awful, literally gut wrenching virus is going around here right now.  I shouldn't whine too much.  No one is having terrible complications, especially FP. It doesn't last forever.   It only feels that way.  And we have been very lucky.  Feisty Pants is having only minor, if messy, tummy troubles. Goo and I did not get it at the same time, so while it makes for a very loooonngg couple of days for one of us, we are able to handle it without having to beg relatives for favors.  It does make me worry what one is supposed to do when a minor crisis becomes a major dilemma because you have a special needs child.  I cannot just hire a babysitter. Seriously, it cannot be legally done. You have to be trained on her machines. We had to take classes on them before we ever allowed to bring her home as a baby.  Nursing care is usually available but hard to arrange, so by the time it is set up, the crisis has passed.  We are so lucky that Hippie Pants is close enough to help on the mornings she doesn't work. 

         But, we are indeed lucky, and so far, fingers crossed, in eleven years we have yet to hit a snag where we couldn't find a solution.  We will recover, even if we all whine the entire time.  It is just a nasty tummy bug.  We did, after all, get our major work for the week done beforehand.  But if you are new to the caring for a feisty one, make sure you have plans for the crazy stuff.  Like what to do if you all get some horrible zombie flu at the same time.  Or someone needs an emergency appendectomy.  Or gets hurt because some idiot did not see the 6'3"  man in the bright blue coat and white helmet on the big silver and black scooter and hits him with her car thus putting one his arms out of commission for three months.  Or any of a billion things that complicate all our lives on a daily basis.  Otherwise, what is a minor (or even major) complication becomes a tsunami of "how the hell will I ever get this done?"

Trailblazing

           If there is one thing I have more than enough of in my life, it is frigging paperwork.  I like to think I am a decently moral person.  I hope I was the same in any past life.  But, alas, I must have been a book thief or some horrible weeny mean  governmental pencil pusher because I am certainly paying penance for it now.  We all have annoying forms to fill at some point.  But I never had so many forms with so many levels of inanity as I do with Feisty Pants.

           I get some of it.  It's awful, but the reality is disabled children are our most vulnerable members of society and, as such, are often prey for the worst among us.  Paper trails help keep track.  It makes sure people are paying attention to those who have little or no voice.  It is supposed to mean that those who fill out such forms have seen the kiddo involved. That paperwork should exist.  But I routinely fill out STUPID forms with silly questions and no one gives you bonus points for being funny. Although I must admit, I will be a bit of a smarty pants if I think can get away with it.  I know it's childish, but when I have to answer a legal form that asks me what language my then 2 month old speaks, I answer gibberish.  The person receiving the formula didn't appreciate it but tough.  And do not ask me to fill out a form I don't actually have to.  I used to politely explain that I did not work for whoever wanted some form I was not responsible for.  Now I just laugh maniacally and hang up on them.  What is some random clerk going to do, fire me?

           The craziest form so far was when I got randomly audited for our taxes and had to prove that Feisty Pants EXISTED.  With two statements from people who dealt with her on a professional basis.   Feisty Pants has been in therapy from the time she was 2 months old.  Children under three are provided early intervention by the state. Since three, she has been in special education.  There is a lot of paper work involved.  All overseen by the state we live in.  Bet you can't guess who audited us.  All they would have had to do was look at their own damn paper work.  Her former teacher provided me a letter of such brilliant, cutting wit I am surprised the auditor did not need stitches.
          And now, sigh, I am looking at a new Tolstoy novel's worth of paper again.  This time from a governmental agency that wants to make sure she still disabled. Because cp and brain injuries clear up on their own, donchyaknow.  As if I wouldn't  be shouting it from the rooftops and doing cartwheels down my street if she did.   And they want to know things like, "How many time has this child been hospitalized?" (We lost count after 2 effing dozen about when FP was three. )  Or, " How many times has the child seen a doctor in the past two years? ( About as often as I change my undies.) On and on, ad nauseum. Sigh.  So if you drive past our house and see Feisty Pants and me roasting marshmallows in the driveway,  I just bet you can't guess what we are roasting them over.

How to Traumatize Other's People's Children Without Even Trying

               If I ever want to be the next John Carpenter or Wes Craven, I won't have to look far for inspiration.  All I will have to do get a transcript of any one of Feisty Pants' visits to the (insert dramatic music cue here) dentist (insert roll of thunder, flash of lightning).  It's a classic horror tale.  All the elements are there.  The day starts out seemingly normal.  The office seems fine, friendly even.  Everything is all right -at first.(Cue shot of overly dramatic prairie dog) Then, like all good horror stories, it begins to seem anxious and the tension builds.  The nice office staff suddenly seem creepy.  Feisty Pants begins to express her anxiety softly at first, but then loud enough that she is whisked away into a back room and doors quickly shut so other kids won't be frightened.  Too late. They already are.  They've seen her face full of suspicion and fear.
              Next comes the really scary part for the other kiddos.  As they begin to ... (wait for it) clean her teeth, she starts howling and bitching.  LOUDLY.   Then the dentist, who actually is a very nice man calmly proceeds to say things that must seem weird to an outsider.  Things like, "I know your scared but must you bite?"  Or, "Oopsy, that's a lot blood for that. Suction, please"  All while Feisty Pants is screaming, "You done? Get done! Go home now!" or "Done. Be Done!" or the ever popular, "Goo! I want GOO! GOONOWNOWNOWNOWNOW!"  And, remember boys and ghouls, her speech is very garbled. When agitated, she sounds like she is crying and whining.  And that's BEFORE she has a mouth full of dental instruments.  Sometimes she kicks too.  So let's see... That's weird dental instrument noises, check.  Child shrieking and seemingly moaning, check.  Suction noises, the mention of blood, and the occasional bang and thump, check.   Yup.  That should just about do it for scary movie noises.  And we are waaayyyyy off in the very back of the dentist's office.  I think that's because the office staff are trying to dampen the noise down so as not to scare the other kids.  Fools.  Those kids all know that's where the dungeon must be kept.  They put all the screamers back there.
               And just when the tension cannot get any higher, it's abruptly quiet. That's almost as freaky as the all the noise was.  I'm sure some kid thinks Feisty Pants has died of fear or been smothered to keep her quiet.  And then, the nice dental hygienist who has been talking in that annoying voice all grown ups get when trying to jolly some little kid (but, let's face it, big people, only comes across as creepy)  tries to cheer Feisty Pants up with a new toothbrush and a sticker or toy.  Feisty Pants, for her part, happily accepts- mostly because she knows they are all done mucking about with her mouth and she can go home now.  And we make the next appointment and stroll on outta there.   With all the little kids in the waiting room looking at Feisty Pants with big serious eyes and slightly worried expressions.  Feisty Pants, who is now in a terrific mood, gives them a wide grin.  By the way- have I mentioned she doesn't swallow properly?  So she gives them a wide grin with a little trickle of blood running down from the corner of her mouth.
              The last couple of times we were there they had us leave by the back door.  I really wonder why.

 

 

November

               So, another Halloween has come and gone.  No one was in the hospital.  No one cried or threw up.  And our jack-o-lanterns made it through the weekend without violence or bloodshed. (Or is that pumpkin guts-shed?)  So, I am officially calling the Season of the Witch a success.  I am a little scared to do that only to wake up tomorrow to some awful horror or fever or "pea soup scene from the Exorcist" style crisis.  But we had a GRAND weekend and I wanna revel in the gratitude a little bit.   We have now hit a fabulous in between moment of the year and I am going to bask in it as long as the Universe allows me to do so. 

              The rush to fall and Halloween is done.  Christmas frenzy is not yet up and running no matter how much  the big box stores want you to think so.  It's still too early to start prepping for stuff yourself like a turkey day.   The clocks have been reset (YAY extra hour of sleep HUZZAH!) and it's cold and blustery outside.  Sigh, long contented sigh.  I am one of those weird freaks who LOVES the cold and dark of the year. A cold November is one of my happy places.  All you sun bathers dreaming of sunny climes and sandy beaches can have them.  I could shack up with a polar bear and be thrilled in an ice age. As long as it's cold enough to kill the leaf mold, Feisty Pants does not wheeze.  This so much more civilized than when she was younger and we spent this time of year camped out in ER's and peds wards.

              And so, not much to rush around doing right now.  As long as Feisty Pants isn't sick, we will just go about our routine.  Therapies and a few doctor's appointments.  One dentist visit to make it through, hopefully with out traumatizing the other kids there.  (Feisty Pants is not a fan of the dentist and makes sure to let everyone know it.)  Some leaves to rake.  A few chores to finish before the snow starts to fly.
            Feisty Pants herself is in good mood too.  She got to be a Ninja Turtle.  (Leonardo, cause he's the leader, of course.)  She originally wanted to be a voodoo doll but no one else wanted to do a voodoo theme AGAIN.  Both she and Hippie Pants go as a theme somehow, so she settled for TMNT because they are (and I'm quoting here) "bad azz".  She is also all excited because she got to break out her new winter coat which is frigging neon pink.  I'm allergic to pink, especially on girls, which just makes that more fun for FP.  She thinks she is being as rebellious as hell.  Do me a favor .  Don't tell her otherwise.  She  is having way too much fun being sure she is a bad azz.  And I just maybe, might get a few minutes to sip some tea and enjoy all her bad azzness.

            

Five Little Pumpkins (Halloween, take two)

           Five little pumpkins sitting on a gate... Actually, that first pumpkin is right in that it is getting late.  As in getting ready for Halloween.  But, if you are perpetually last minute like we are, then heck, you're right on time for carving those pumpkins.   So to help you with your last minute spooky prep, here are some great pumpkin links.

 

Pumpkin Stencils:

HGTV's 24 free printable pumpkin stencils- classic Halloween themes:

HGTV free pumpkin stencils

 

WWFs free pumpkin stencils- 9 nature themed stencils:

WWF nature themed pumpkin stencils

 

Better Homes and Gardens page of pumpkin ideas- includes links to free stencils for every level of skill and ambition:

BHG free pumpkin stencils

 

 

           What to do with those pesky pumpkin guts and seeds-  Compost the guts.  Next spring's plantings will thank you.  As for the seeds, roast those little suckers up. An easy peasy, yummy, good for you snack!

Roasted pumpkins seeds: wash and drain (very well drained) seeds. Preheat oven to 300 degrees.  Toss seeds with 2 tbs melted butter (or oil if you prefer) and a little salt.  Spread in a single layer on cookie sheet and bake for about 45 minutes.  Want to get fancy?  Add cinnamon and 1TBS sugar (for sweet) or garlic powder ( for savory and, bonus, keeps away those pesky vampires) when tossing in the butter and salt.

 

            Don't know what to do with those left over pumpkins AFTER Halloween?  I take our carved ones and simply fill them with bird seed or corn and leave them for the squirrels.  But if you have any of those little ones often left uncarved, you can simply cut the top off, clean them out, and stuff them for dinner.  I like rice or barley with garlic, onions, mushrooms, any veggies you have left lying about, sausage (for the carnivores) and a little allspice and maple syrup.  Simply saute the sausage and veggies. Mix with precooked rice or barley, stir in some allspice and maple syrup.  Stuff into the little pumpkins and bake at 375 until the pumpkin is soft on the inside (like you would expect any squash to be when done.) Smells like autumn, tastes fabulous, and if you don't fess up, the kids never know exactly how healthy it is for them.

Halloween, take one

              We're a little nuts for Halloween around here.  I know, you're shocked.  Quiet, straight laced us?!? Get all nerdy and put on funny outfits and wallow in scary and spooky and chocolate?  Us?  Yup, believe it or not, Halloween is just our thing.  (Seriously, I even love the week after Halloween. All my kids' favorite things go on clearance at the stores. I do half my Christmas shopping then.) And since we do adore Halloween, I have been saving all sorts of links and ideas and tips for the next few posts. If my saved emails were a person, it would be Tim Burton in drag. So please, bear with me as I try to whip into shape this giant trough of pumpkins, spooky awesomeness and glitter that is my inbox right now. 

             I thought I would start first with some cheap and cheerful costume ideas. You make an of these at the last minute and in under an hour.  (Trust me- we do EVERYTHING last minute and under an hour.)

1) Ghost- an oldie but a goodie.    You can either go the Charlie Brown route and simply cut eye and nose hole (in not quite the middle) and throw over your kid/yourself.  Or, you can do what we did with Feisty Pants, which was cut a hole in the center of a sheet like it was a poncho.  We then powdered her hair and face with white powder and added a bit of eyeliner for that extra cool dead girl look.   We cut a tombstone out of cardboard and attached it to her goodie bag. She chose RIP , made up a century old death date and used Abby Normal as her nom de dead.  Steal some chains from your local teen or dog walker to finish the look.  You can get an old tacky floral sheet and go as an ironic ghost if you are so inclined.

2)Gargoyle- Plain grey sweats serve as the basis for this costume. FP already had these so we spent a total of three bucks that Halloween.  We bought a dollar store devil mask, used a extra pair of her sister's fairy wings (Yes, my eldest had spare fairy wings, why do you ask?) and a can of silver hair color (the spray on kind at the dollar store.)  We simply sprayed everything silver, including Feisty Pants' hair.  If you don't have hippie, artsy teens at your house, you can easily make wings by shaping a wing out a wire coat hanger (make two) and stretching a pair of colored tights over the frame.

3) Need an idea for a duo?  Red sweats or a red union suit or red footie pjs make a great basis for Thing 1 and Thing 2.  Spray on blue hair color and make two circle labels out white construction paper or cardboard and you're good to go.  This also works as an excuse if your kids are heathens.  You can just say they are really into their characters.

4) Dead anything- seriously, it's Halloween.  Got any outfit or costume that looks a bit generic. PERFECT- go as a dead one of those.  Suit?  Go as a dead executive. Uniform of some sort? go as a dead one of those. Mailman, garbageman, hunter, cheerleader, prom dress, or old church clothes?   Anything screams Halloween if you look dead.  Put on very pale make up, use blue or green or grey eyeshadow as blush.  Smudge the eyeliner.  Throw on some red paint or fake blood.  If you're good at make up, craft a scar or three.  Make up a gross, horrifying story of how you died, and boom, you're the next hit at the party.

                     So, there you go, have fun, be safe and don't take any wooden silver pennies for the ferryman.  Happy Haunting!

 

Treadmill

           Well, they weren't kidding when they said this was a supercold.  Feisty Pants is handling it well. But, but, but.... she is whiny and wheezy and achy and out of sorts.  Mind you, I know we have dodged a bullet on this one. Even a tiny bit worse would have meant an er visit, chest x-rays, and more than likely,  an admission.  And every day she seems progressively better.  It's just that we seem stuck on the O2/ fever treadmill.  FP either wheezes and pants when we try to take off the O2  or she randomly pops a temp thus eliminating the idea of going anywhere for five minutes, let alone going to school all day. 

               I feel terrible for her nurse, too.    The woman is sweet and kind and FABULOUS at her job.  And every night, we are calling her up and telling her not to come into work the next day.  It must be like winning a crappy lottery every night.  Or hearing the worst joke ever. ( Riddle me this, who's gonna get to sleep in but miss a day's pay, AGAIN?)  The school hired her through a temp agency, so I hope they can just send her to another assignment for the day.  Hopefully, without said assignment being so fabulous we lose her over it. (Does that make selfish?  Don't answer, I actually don't care...  I love the way that nurse works with my child.)

               I shouldn't whine too much either, really.  Feisty Pants is on the mend.  The torrent of goop coming out of her face is now clear, not scary,icky colors.   She is much more talkative (read that as bitching up a storm because we are tormenting her with our boringness.)  She won't leave the cannula on for more than 30 seconds.  These are all great signs in a medically fragile kid. If you have the energy to misbehave, you are feeling better.  Not being a pain in the tush is a danger sign.  They are either sick or plotting.  Oh, but I cannot seem to get anything done around here.  FP is literally tied to her O2 supply right now.  If she is tied to the house, so am I.  Normally I have no problem with that.  I like the idea of spending my days in my backyard or just strolling my neighborhood.   But the second the choice is out my hands, I turn into Feisty Pants and hate it.  What if I wanted to hike the Himalayas or walk to Macchu Pichu?  (You don't know. I could too want that.)  The work around just seems to be piling up too.  I swear the Universe thinks "Aha, she's NOT hiking the Himalayas this week.  Let's send  a million more emails that seem urgent until she opens them. And break something easily fixable, but time consuming.That way she won't be bored."
              It also doesn't help that weather has been strange all week.  Too hot at night too sleep with the windows closed.  Too rainy to sleep with them open. (It's OCTOBER, Universe, where are my chilly, creepy, ghostly nights??)  So I am tired and cranky on top of it all.  Poor Feisty Pants, she really is stuck in the house with miserable, cranky old farts.  She needs to get better and plot her escape.

That Scary Time of Year

         Sigh, double sigh, effing sigh again.  Feisty Pants is sick as dog so now I am nervous.  I would have been nervous Friday, but I was way too busy. (Today is a little quieter so I have time to worry. ) She came home early from school on Wednesday.  A fever, but with no other symptoms. Unless you count crabby as a symptom.  I don't.  If I did, I would think we were all sick, all of the time.   We gave her ibuprofen and she would seem fine.  The motrin would wear off and she would cry. But that was all.  For 48 hours.  Friday morning she became mucus-y and goopy and even crabbier. So we called the doc, made an appointment for that very afternoon and then had to jam all our normal Friday stuff in the day somehow. (Grocery shopping, laundry, errands, etc.)  This doesn't sound like a big deal.  Have I mentioned we do not own a car?  (It's simply an extra expense that we don't need. We live in a small city so it's a luxury, not a necessity.)

         Since we were not sure how bad she is going to get, we felt we had to get our stuff done that we had planned. If she were to end up hospitalized, nothing gets done.  Sometimes you can tell an illness is going to be a doozy.  Sometimes you can sense it will not be a big deal.  This one is viral and a little unusual, so we had to hedge our bets. Sooooooo... We dragged Hippie Pants out her bed and nice warm apartment to come watch Feisty Pants and Cheweverything Pants extra early. We then literally powerwalked/hauled ass to do our errands and the grocery store, shopped, came home, and put everything away.   We then did as much laundry as you can in an hour and a half.  Grabbed a taxi and headed for the doctor's office.  Where our pediatrician was not in (Of course, why get sick when it's convenient?  That takes all the sport out of it.) so we saw one his partners who had NOT seen FP before.   To his credit, he did not freak out.  He did however, take a long time- normally a rare and FABULOUS quality in a doc but damn it made the afternoon longer.  Then all over the hospital complex to hit the pharmacy and do what errands we had there. Then waited an hour and a half for the cab back, because obviously we had time to kill not having anything to do.  Then stuffed more laundry into the machine, stuffed Goo into bed (he had been up 26 hours at that point), stuffed FP's oxygen onto her face a million times.  She tends to be a tube puller when cranky. Oxygen, g-tube, feeding adapter, IV's, it's all a tube to be yanked and thrown when she's annoyed.  Oh, and babysat Dinky Pants so his parents could get some stuff done that they didn't do because they were at my place babysitting Feisty Pants.  He's crawling/almost walking now, so he's almost quicker on all fours than I am on twos.   And does not approve of the flavor of puppy food we get Cheweverything Pants.  And told us so in no uncertain terms.  Cheweverything Pants, for her part, does approve of the flavor of laundry detergent we use, which she told us by trying to eat half of FP's clothes.  Fridays are just party time at our house.

            But now, its the weekend, and we managed to get most of our crap done without causing too much mayhem and bloodshed.  Feisty Pants has a nasty, nasty cold. The doctor referred to it as a supercold.  And because it's Feisty Pants, put her on an antibiotic.  It sounds counter intuitive to treat a virus with an antibiotic, but not in FP's case. It's often not a question of IF she will develop a secondary infection from a virus, but when she will get it.  This tactic will hopefully keep her out of the hospital.  And, thankfully, this antibiotic is not one the ones that gives her "digestive issues".  (Most do.)  The doctor, very kindly, warned us that this virus seems to take about a week to clear maybe longer in Feisty Pants' case.  That gives me a time frame in which to NOT worry so much if she seems to take forever to get better.   And everyone has been warned we are plague house (That is what that big x on my door means, right??)  so we probably won't have a lot of people in and out.   If we do, they can't bitch if FP coughs all over them and they turn into zombies.  So, it's now quiet, and we have time to sit around and watch Feisty Pants wheeze and sneeze and cough and complain that everything sucks. And I have time to sit around and wonder what "supercold" means- EV- d68? Ebola? RSV? (Not likely, we have had that one- you can't get that again.  Can you?  Are they sure?)  Ahhhh well, nothing for it but sit around catch up on episodes of the Strain and Walking Dead.  Now, those viruses seem to suck.   Good thing they're not real.  (Are they? Are they sure?)

 

        

Synonyms for Boring

        Well, Feisty Pants had a busy weekend. We attended a baby shower this weekend.  She was thrilled.  Last weekend, she had some weird bug -a tummy bug, we think, and so was stuck at home. Anything is better than being stuck at home .  Heck, she got stuck in an elevator (only for a few minutes) which she found funny.  Anything that freaks out an adult is a great thrill for her. Dinky Pants was there and created some mild mayhem as only a nine month old can do.  That delighted her even more.  Best of all, Feisty Pants has made some leaps in her speech as of late, so the mom to be, who is a friend of Hippie Pants, was there to be awed and amazed by FP's new verbal skills.  In her mind, all those presents and games about babies were just filler between elevator adventures and showing off and cake.

        Sunday was our typical Sunday.  Football and cleaning. Seemed to take forever but we finished and no one cried or threw up or had a temper tantrum.  The kid was pretty good too.  And that was our almost exciting weekend. (She says just one fun thing alllllll weekend doesn't count.)  Now it's another Monday night. As I sit here attempting to type this on my phone, Feisty Pants is sitting here dozing on the couch beside me. Missing one of her favorite shows (Spooky Hollow-it is not Sleepy Hollow she says, because there is nothing sleepy about it. )  But it is Monday night, she had a busy day at school and then massage therapy today.  Not a bad end to a busy day and a busy weekend.

           And that's the point of this post.  There a million ways you are forever different from other parents when you have special needs child.  But sometimes  more importantly, there are a BILLION ways that you are just like everyone else.  We love, eat, argue over football, hang out, embarrass our children with our oh so freakish existence.  We bore them and nag them and annoy them with our presence and horrible rules.  Just like every other weird, boring, embarrassing parent.
           And on this boring Monday in boring October,  when everyone is boringly well, a night of listening to my eleven year old dozing on the couch is absolutely boringly awesome. Tonight boring is a synonym for beautiful.

Whistling Past the Graveyard

              So, it's fall now.  Part of me is doing  cartwheels and waiting with maniacal glee for cooler weather and colored leaves and Halloween.  Part of me is holding my breath to see how Feisty Pants will handle the annual leaf mold/cold sharing/mildew wheezing season that is October and November for her.   I cannot complain too much yet.  Until she was six, it was a guarantee that she would spend most, if not all, of October and November in and out of the hospital.  Her record best is 10 days on a ventilator for pneumonia, five days regular admission after that only to be discharged and 48 HOURS later be sent back into an ER, helicoptered AGAIN back to the same hospital that had just discharged her for another 14 days on a  ventilator due to a virus she picked during the first hospital stay.   The very first Halloween she was not hospitalized, she came down with swine flu.  (We all did- that was a fun week.) 

              But although, I do tend to worry about colds and flu and such, I try not to freak out.  I've learned the hard way not to turn into Monk/Howard Hughes.  I used to try to sterilize everything in the house, but that's a fool's errand.  You cannot really control everything.  The chemicals irritate Feisty Pant's lungs and make her more likely to get the very problems we are hoping to eliminate.  So we caught our breath and rethought our plans.   No harsh chemicals.  Hand sanitizer for those who touch her. A round of flu vaccines for everyone who spends a lot time around FP every year, and don't bitch because I don't care.  Leave your really smelly artificial perfumes at home, please.  (Really smelly natural ones are ok.) It works for us, it works better for her.  I sleep easier at night.

              BUT BUT BUT -and there is always a but- every time I turn around there is some head line from the worst case scenario crowd that seems to want to give a special needs mom nightmares.  SARS, bird flu, swine flu, RSV, Ebola, and now, EV-D68.  It's often hard to see which ones are important and which ones are simply headlines that sell well.  I get why we all do it.  News is a BUSINESS after all and they are all competing for our attention.   Fear sells well.  It seems urgent, even when it isn't .  Fear is seductive and self aggrandizing.  (Why, if everything is out to get me, I must be important!)  SARS was terrible for those who got it.  Bird flu is much ado over very little.  Swine Flu sucked to get BUT we all sailed right through it.  (Sort of, in a whiny, cranky, sit around in your pj's and shiver for a week kind of way- but NO respiratory complications.) RSV is actually scary.  To you and me, it's just a bad cold so we don't really take it seriously. To the disabled or infants- it's a life threatening illness.  (And the cause for the second half of that marathon hospital stay I mentioned up there in paragraph one.) Ebola is awful, but containable and treatable if we all get off our collective butts and do what needs to be done.  That leaves EV-D68.   This fall's flavor of scary.
             So, as a public service and to sort of whistle past the graveyard as it were, here is a very non-scientific overview of what we know.  I will post a couple of links at the bottom to actual facts and figures.
             Enterovirus-D68 is respiratory virus that can quickly spread through droplet contact.  Think sneezing, coughing, spittle, unwashed hands and unwashed surfaces.  In its mild form it is a cold.  Runny nose and slight fever.  In its severe form it causes wheezing, asthma attacks and breathing problems.  Children and teenagers are most likely to get it.  (Once you've had it you build an immunity to it.)  It is most prevalent in summer and fall.  We are now seeing an outbreak that is quickly spreading and is confirmed in New York state. (Where we live.) The best defense is common sense.  Wash your damn hands.  A lot.  Don't share tissues, plates, utensils, cups etc with someone with a cold.  (Most people don't.  But most people aren't under five- and those little buggers share EVERYTHING) Teach your little ones some basic sniffles hygiene and nag them about it.  Use hand sanitizer and clean all those counters and desk tops.   If you get a cold- STAY HOME.   SERIOUSLY, you're not toughing it out.  You're risking someone else's health. Please don't do that.  If you get a cold and it seems to be affecting your breathing, get a hold of your doctor and do what needs to be done.  My guess is this is one of those viruses that, if severe, is treated by supportive care- oxygen, nebulizer treatments, steroids, until it runs its course. Which should not be too scary if treated quickly.  Links are below.  If you need me or Feisty Pants, we'll be in the backyard watching leaves, coated in Purell.   If you come by, please use hand sanitizer or you will subject to a cleaning by Cheweverything Pants.  That alone should kill anything.  Lord knows, her breath can.  You've all been warned.

Center For Disease Control- EV-D68

NY Stat Dept. of Health -EV-D68

          

             

Yay!! Fall!!

                  Since today is the official last summer (Would the last one out of the pool please remember to turn off the frigging heat?!?) and tomorrow is therefore the return of sweater weather and cute boots and thank goodness, autumn. (Yay! a round of pumpkin spice anything please.) I thought I would post a few fun fall crafts.  They are easy, cheap and in no particular order.

 

1) Coffee filter leaves- no color in your yard yet?  No problem- make your own version of nature's best trick.  You will  need coffee filters, markers and a spray bottle filled with water.   Simply cut out leaf shapes out of the filters, get the kids to color them with markers (the more colorful the better) and mist with the water.  The colors will run making for beautiful leaves when dry.  You can even use these for the next craft...

  2) Leaf wreath- you will need fall leaves (real  or make your own), circles cut of anything stiff (manilla folders, cardboard,paper plates,card stock, anything really), and glue.    Simply let the kids glue the leaves onto the circles and hang when finished.  VERY easy and quite beautiful.

3) Fall trees- you will need glue, paper, twigs, and either leaves or tissue paper.  Simply glue the twigs to the paper as the tree trunks and branches, glue on the leaves (or tissue paper cut into random shapes) for the leaves.  These are actually quite pretty.   You can spray on spray glitter for a frosty effect.  (You could actually do that with any of these crafts.)

4)Fall sensory jar- you will need a jar with lid. ( Any somewhat large clear jar with a lid will work. Just make sure you can get the objects in the jar) plastic fall themed items- buttons, beads, plastic leaves or flowers (you can easily take apart a plastic floral spray from the dollar store) just think in fall colors.  Some glitter. ('cause what doesn't need some glitter?) and glue for the lid.  Simply fill a clean jar most of the way with water (you could add a few drops food coloring if you so desired), add the leaves, beads, buttons etc.  And some glitter. Glue the lid on. (You should probably do this one, grown up.)  When the glue is dry, these make great calming toys for kids, especially kids with sensory issues.

5)Bagel bird feeder ring- (You can use pine cones too, if you have any)  You will need a bagel (or each feeder ring), peanut butter, bird seed, and string to hang.   Put the bird seed in a large bowl or cake pan for this one.   Simply slather the bagel (or pine cone) in peanut butter, then roll in the bird seed till completely covered.  Tie the string to hang and hang from a nearby tree.

6) Pumpkin spice cocoa- (Yup, I went there.)  Simply make any cocoa you love.  Add a tablespoon of canned pumpkin and a dash or three of pumpkin pie spice (or just wing it and add cinnamon and a dash of ginger and nutmeg)  Save the rest of the pumpkin in your fridge to add to your coffee, chai tea, more cocoa, whatever.

 Happy Fall everyone!!!!

What a Pain

                    Sigh.  So, Feisty Pants has been extra, extra feisty today.   She's been making a concerted effort to work hard and be good lately.  And goodness knows, that is WORK for her. No one in our family has ever been known for obedience or compliance.   But, today, sigh, today she has spent  the day oh so obviously trying to be good but not quite making it.   By the end of the evening she was literally screaming in her feeder seat for an hour straight.  We couldn't find anything wrong.  It's not too hot.  We couldn't find any cramping.   Her tummy seemed fine.  We gave her tylenol to be sure.  (When she is cranky, she automatically tells you everything hurts- including eyelashes, toenails, hair and eyebrows.)  I think perhaps she just had a case of the mondays and needed to blow off some steam in a primal shriek sort of way.  For an hour straight.   Lucky mommy and Goo, she sang us the Lament of Feisty Ones everywhere.  Not everyone gets to hear that rare folk song.

                   But, it did get me thinking.  With kids as tough as Feisty Pants it is hard to suss out pain.   And when FP is frustrated, every thing is pain to her.  So what do you do when you can't find the cause or soothe the boo-boo or it's simply taking forever for the tylenol/ibuprofen/heroin to kick in?  Distract, distract,distract. So I thought I would pass along the great distraction tips I've picked up from the bazillion peds wards we have hung out in along the way.

1) A warm bath/shower.  There aren't enough words to describe how soothing this is.  Personally, I think it hits a primal floating in the womb nerve we all never lose.  The warmth is relaxing and helps unloosen tension and muscle spasms.  You can even add a cup of epsom salts for the magnesium.  It will help the muscles relax if sore and an promote sleep. Or a bit of eucalyptus oil/herbs for sinus issues or whatever cold they are all sharing at school this week. 

2) Massage- GENTLE, forget all that rough crap you see on tv or in spas.  Those people went to school to do that safely.  But a gentle massage is soothing and may help release toxins from the body.  The act of touch alone is necessary for all kids.  Use some coconut oil with a few drops of lavender oil/chamomile oil and watch the kids melt.  This one is FABULOUS for a cranky baby or toddler.

3)Music- (the great distractor!!) pick a beat to match the mood you want to produce.  Catchy pop tunes for an upbeat mood.  Soft lullabyes or singer/song writer love ballads for soothing.  Put it on and sing and dance for your kid.  Who cares if sound like a frog or look like a complete dork??!?  You kid won't judge that much, and later, I guarantee they will remember fondly that you were willing to dork out just for them.

4)Bubbles- I bring these up a lot BUT thats 'cause they are awesome.  They are quiet and distracting.  I don't even care if we get them all over my floor.  It will easily mop up and then I have a somewhat clean floor for a change.  Besides bubbles don't usually hit the floor  here.  Cheweverything Pants is sure they are aliens and must protect Feisty Pants from them by eating any she can find.  Feisty Pants find this HILAROUS.

5) Ice- if it's a bruise, bump or strain, ice is a sensible idea to begin with.  It's also great on bee stings and bug bites.  But here's the kicker, sometimes ice works best as a distraction. Kids tend to play with and it keeps them occupied.  And it makes them feel like they are doing something to help themselves thus giving them a sense of control over the problem.

6)Hot water bottle/warm rice bag- great for tummy aches or ear aches.  The warmth is soothing and again, there is the idea of control. Which is very calming

                      So, there you go.  Some quick down and dirty tips on how to not lose your mind until the moment passes and the pain reliever kicks in.  For the record, Feisty Pants made it through her awful torture of dinner.  Snuggled with me for little bit while complaining no one ever listens to her then cuddled on the couch with Goo.   She is now perfectly content watching some sci fi move about "a cool guy with robot finders (fingers)".  That must have been the problem all along.  Not enough robot fingers.

Therapy

               I was originally going to make this post about what a crazy week we are having.   Feisty Pants is back in school.  Therapy has started up again.  We have a snowstorm of paperwork to fill out.  And a bunch of doctor's appointments (they tend to come in waves).  And the grents came up for a surprise visit this weekend.  Grents is how FP pronounces "grandparents".  So we are crazy and tired and underslept and overscheduled.   Or as we call it, life.   But eff that noise, I want to talk about therapy.

             When Feisty Pants was born she went without oxygen for about 10 minutes.  That is an eternity.  Most don't survive.  Of those who do, we were told that most babies with that bad of a traumatic brain injury are "neurologically devastated".  In fact, I was told, "you need to know you are likely taking her home to die". (She's eleven and a half years old as of yesterday. All you pessimists can go suck it.)  But the one silver lining was this advice: "Get her into therapy NOW, it's her only shot."

               So, that is what we did.  We brought her home at six weeks old.  By eight weeks, we had her in therapy.  I have learned over the years to be a complete glutton for therapy.  Physical therapy, occupational therapy, visual therapy, speech therapy, massage therapy, music therapy,  and when we can, aquatherapy.  I would do hippotherapy if I could arrange for it. I've even learned to stomp my feet and throw a fit to have therapy when she is in the hospital. 
                So, what is the upshot of all this?  Well, when we first brought her home, all we knew was that we THOUGHT she could hear.  (not swallow, or see, or feel, or understand)  Within a few months, we knew she could hear, we knew she see some but not all colors (not movement), she definitely had feeling (I mean as in sense of touch, not emotions.)
                  Now, eleven years later, we know she's smart. Whipcrack smart.  Her hearing is better than most people's.  Her muscles rebel and don't obey but not due to lack of will.   And her vision has been an amazing journey. First, she learned to see blue and green.  Then she began to exhibit signs of seeing sloooow movement.  Then we found she could see outline and shape.  And then sat at that point for several years.  And I would have been okay with it.  But about 6 to 9 months ago, she began to refuse her glasses.  This has gotten worse over time to the point where she will not wear them at all.  In fact she insisted they made things worse.  So, back off to the low vision specialist we went.  That was this morning.  We got up early.  (Or stayed up late, in Goo's case.) Climbed into a cab that smelled  like a cow with a bad nicotine habit.  And rode way too far for anyone's comfort.  To meet with her doctor who listened carefully to everything we had to say, and began what is a routine exam for kids like mine.  (Can you see these stripes?  How about these ones?)  Five minutes in she looked at us and said, "I am not kidding. I have goosebumps.  This is astounding."  Feisty Pants has really bad vision.  But it has improved at a rate no one thought would ever happen.  And we really have no idea how much better it can get. 
                    And, THAT, boys and girls, is what this has all been about.  All the therapies, all the work, all the crazy schedules, and all the fighting with my stubborn feisty one who hates to cooperate with any boring adult.  Because, instead of not knowing and fearing what the future will bring for her, we sometimes get to sit around and not know, but HOPE, what she damn well might be able to accomplish for herself.  And that hope is a better high than heroin.  A bigger rush than adrenaline.   It's like college graduation and falling in love and eating dark chocolate and winning the lottery and fireworks all rolled into one.  Therapy is the key to ever achieving that zen like bliss.  
                   We even got to have a riding off into the sunset moment.  (Ok- it was a noonday sun, but who cares?) As we climbed back into the smelly cow of a cab, Feisty Pants looked me dead in the eye and said "told you".  Damn right Feisty Pants, you sure did.

                         

Bath Seat Blues

               Okies, so this post is shout out for anyone with info.   Feisty Pants is getting bigger and has become hard to hang on in the tub.   So now we are looking for some adaptive equipment.  But it's a tad complicated.   Allow me to explain.

              When we bought our house (a 1925 two story, four square, EJ house) , it had been adapted for the elderly man who had lived in it previously.  Read that as the bathtub had been removed replaced with a step in shower stall.  A small shower stall.   After we had Feisty Pants, it became apparent that this would not work for us.  We needed  a bathtub.  She has spastic CP and could use the occasional soak in warm water.  Besides no shower chair fit in our little shower.  An insurance program helped to cover the cost and provided us with a walk in bathtub.

              It's awesome.  It worked great for her. It has a built in seat and she could sit on my lap and we could exercise her legs or massage her back. It has worked well for the last 8 years.  BUT now she is almost 70 pounds and hard to hold as she squirms and giggles and is full of soap.  So we need to find a bath seat that fits a walk in tub.  Regular shower chairs will not work.  They need more floor space than my tub has.  A potty/shower chair (yes, that is indeed a thing) doesn't fit the space.  What we need is basically a bath lift.
              A bath lift (think along the lines of a pool lift or ski lift chair) would work perfectly.  Even more importantly, we think we know how to get it funded.  BUT- and there is always a but (sigh), when researching them on line I seem to have hit a snag.  (And I think I get only shot at this type of equipment and then the insurance says forget it. )They all give a lift of about 22 inches.  The height of a regular bathtub.  Which I do not have.  I do NOT NO NOT want to remodel my only bathroom again.  So, I turn the universe at large, and if you are still reading this , you random lovely internet person.  Does anyone know if this type of lift:

 

Will work with this type of tub?:

 

Hit me up the comments, (or FB -search for Mikki Chalker of Binghamton NY)  any info would be awesome. Thanks. Peace.

 

 

 

Thanks

                     It's been a while since I did any kind of post about being grateful.  When I started this blog, I thought if I could throw a post in about gratitude every so often that it would be a decent thing to do maybe I would start thinking along those lines and be a better human being.  Apparently I'm just not that nice of a person.  Sigh.  I really should not have to remind myself to do this once in a while.  But it seems I do.  So here goes, my latest overdue gratitude list.

                     First, a belated shout out to my daughter's now former teacher.   I wanted to send a note at the end of the year because after three years of educational bliss, Feisty Pants is moving along to the next teacher.  But I got busy.  And I am awful. You cannot have any idea of what an amazing difference you have made in her life.  My daughter is notorious for refusing to cooperate with basically, anything she does not damn well feel like cooperating with.  Nazi villains in movies could not get her to talk.  Her first three years at school, she refused to say a single word.  The school had pretty much given up on her.  We got her into your school and your program and you had her talking in three days.  And excited about school.  And excited about learning.  You are Annie Sullivan and Mr. Rogers and Obi Wan Kenobi all rolled into one.  When Feisty Pants becomes an evil overlord, we are cloning you first.  Thank you. No wait, I don't usually call people by their real names (I feel it's kinda not fair of me to tell someone else's story) but in this case, I want to shout it from the rooftops.  Thank you, Jane Tilleman, for being one the best thing things that has ever happened to my child.

                    Thank you, and happy friendship anniversary (frieniversary?) to Awesome Pants.   I cannot believe I have known you thirty years.  Thirty. Frigging. Years.  You really are one of my tribe.  Anybody else I have known longer and still hang out with happen to be related to me. When I met you , you were a shy but feisty baricua straight outta Brooklyn.  Having just fallen of the turnip truck on the way into town, I was in awe at your poise and openness.  Thirty years later you have become a true wise Latina (in the words of another wise Latina) and I am still  a little bit in awe of you.  Thanks for being there and being you. 

                  Than you Feisty Pants, for your new obsession with caramel ice cream.  (We make our own ice cream here and let the kids pick the flavor.)  When I drag my cranky mom butt out of bed in the am and come downstairs for coffee, it's pretty nice to be able to throw a spoonful a caramel ice cream in it and have one decadent mother of a cup first thing.  That was clever of you to think of and makes my day just a little nicer. Thanks, kiddo.

                  Well, that wasn't so hard after all.  And I really do feel more peaceful and zen like.    So, thanks to anyone out there reading this.  I really do appreciate all of you too.  Peace. 

Scars

                Well now,  we have had an eventful afternoon.  Feisty Pants must have been wishing for something exciting to happen and it did.    One of our local hospitals has a movable mammogram.  Basically, it is a big Winnebago with a mammogram machine inside it.   They use it for outreach and screenings for breast cancer (duh).  Today, however, it was more like something out of the Road Warrior.  (Mad Max and the Mammograms of Mayhem?)  As it was driving past my house, it hit my cable and phone lines and snapped them in half.  It even pulled the junction boxes right off the side of my house.  Shook the whole neighborhood.  And scared the dog.  Feisty Pants was thrilled.  Then she realized we have no cable.  She is no longer thrilled at all.  Even a bike ride did not cheer her up.  Not even the two trucks and three workmen trying to piece it all back together are interesting her anymore.  Normally she likes tv but is not so attached to it.  But she is eleven, so the minute she is told she cannot have something she is dead certain that is ALL she ever wanted in her whole life.  And right now, that is tv.

               I have to say, I know how she feels.   Normally, I could give a rat’s fanny about the phone.   I have hard time paying attention to what is said to me (as opposed to what I see.)  So phones are work.  But the minute I cannot call 911 from a landline, I get very,  very nervous.  Losing electricity to run her machines (food pump, pulse oximeter, suction machine, nebulizer, etc.) is a seriously big deal.  But having those machines in your house automatically comes with a contingency plan.  (Legal forms and everything.)  Not having access to 911 is a bigger deal.  I have a cell but with an out of state number and no idea if that changes how 911 operates for me.  I don’t want to find out the hard way.  Forget the fact that she is not sick now.  Forget the fact that it’s summer and that’s a GOOD time of year for her, health wise.  Forget the fact that we haven’t had to call 911 since she was five.  All those horrible nights of running hellbent to call 911 and start cpr come flooding back in a horrible rush of Dear God, What if??

             That’s what this post is about I guess.  The fact is that there are some things that will be forever different for you once you are the parent of a special needs kid.  This weekend there was an accident on my street .  A drunk driver slammed into a telephone pole.  I heard a bang then what sounded to my groggy ears like my kid crying (it was the driver screaming for help outside) and then heard my husband call 911. I flew downstairs is an adrenalized rush only to have Goo tell me to be quiet before I woke up Feisty Pants who was sleeping and breathing peacefully.  It has been years since we had that kind of crisis.  But it never leaves you.  There are a million joys in parenting any child.  Mine is no different in that respect.  But there are a million ways it is different.  Some of them you’ll be proud of.  Some of them you won’t notice until someone else points them out.  And some will just be there, like a scar you hardly notice until it gets cold (or the phone goes out) and then it aches in ways you forgot you knew. Not much for it though, but to borrow a cup of determination from your kid and roll with it.  Trust me, they’ve got tons to spare.

Rainy Days and Saturdays

         Ahhh rain...  I used to LOVE rainy days.  And storms.  And wind.  And most of all, snow storms.   (I am told this an adhd trait.  Nonsense.   I like to think it simply means I have a discerning soul.)  But rainy days are not quite the friend they used to be.  Rain and humid/damp days mean MILDEW, especially in my 90 year old moldy, musty house.  And that means a sneezy, wheezy Feisty Pants. Which in turn means a grumpy Feisty Pants.   It does not help that it also means no bike rides for FP, who has watched every interesting show EVER made for tv and played with any toy worth playing with and done everything fun to do EVER and now has nothing to do or watch or see.  Plus, by some hideous quirk of fate, her parents are the most boring people who ever existed.  Even the dog has died of boredom. (Read that as spent the day snoring on the couch.)  Bubbles are not bubbly enough, paint is not artsy enough, and tv sucks until 8 PM (When the new Dr. Who comes on).  Eight pm is, however, CENTURIES away and she will been driven mad with boredom by then.

             So, all of this horrible, terrible, obviously terminal ennui has sent me running the interwebs to scour for a cure or, at least, some interesting ways to keep Feisty Pants from succumbing until the sun comes back or the Tardis arrives.  I am passing some along in no particular order in case you are mean and boring too.

1) Bubble wrap painting:  This one's been making the rounds on facebook.  You simply need paint (probably fingerpaint will work best), large sheets of paper and bubble wrap.  Wrap bubble wrap around feet and /or hands (use a bit of tape to keep in place) squeeze some paint onto the paper and let the little ones go to town.  I wouldn't do this on a carpeted floor, but we are philistines with all hardwood here so we like this. If you're fussy, try spreading out an old sheet on the floor first to keep the mess contained. 

2) Edible tinkertoys- For this all you need are marshmallows and pretzel sticks.  You can throw in some berries if you really want to be fancy.  The kids simply poke the sticks into the marshmallows and build to their heart's content.  They can even eat their buildings.  You could even substitute cut fruit and cheese cubes for th marshmallows and call it the most fun lunch ever.  

3) Fridge Art- I got this from my grandmother who had nine kids and over thirty grandkids.  By the time I was around (I am the youngest girl of my generation, second youngest overall) she knew every trick in the book.  Once a month, she would hand me a box of crayons and have me draw a scene on the side of her fridge. (Some theme pertaining to the month)  I got the thrill of drawing right on an appliance.  (It's like being asked to go ahead and draw right on the wall!) She got a quiet afternoon with no whining.  If you use the cheap waxy crayons, it's amazingly easy to clean with windex. 

4) Recycled crayons- you will need broken crayons and a lightly oiled muffin tin.  Have the kids gather up all the broken crayon odds and ends. Make sure to remove any of the paper labels.  Simply place the pieces into the muffin cups. (They don't need to be filled.)  Let the kids decide on color combos, etc.  Then place the muffin tins in a large cake pan.  Add hot (stove hot, not tap hot) water to the cake pan and let the crayons melt together.  When cool, simply pop out the new crayons and have fun.  You could even simply place the muffin tin directly into the oven and bake to melt, but I am unsure at what temperature. I'd guess 250 and keep an eye on them, but I am guessing here. If anyone reading this knows -hit me up in the comment section.

                    So there you go, that should get you through at least an afternoon.   If these don't work you, you can always send your kids over here to listen Feisty Pants complain about how they don't know anything about boredom because she is stuck with us and we are the most borrrrring people who ever existed.

Monday Morning

                      Oh dear lord, do I have a case of the Mondays today.  sigh....  Feisty Pants, by contrast, is giggling and happy.  Thank goodness.  Yesterday she spent three hours straight whining and crying.  (Headache- it took two doses of ibuprofen and one of tylenol to finally beat it into submission.) It's her first official day of break and there is a Dr. Who special on to keep her occupied.  I, however woke up to Goo yelling about her g-tube leaking.   ALL. OVER. THE. FEEDING. SEAT. AND. FLOOR.  Her food is a special high calorie formula- read that as incredibly thick and sticky. Five phone calls to the doctor later we finally figured out and fixed the problem.  He wasn't in the office but the secretary was relaying messages back and forth which just made it all more complicated.  But it was messy and time consuming and not helped by Cheweverything Pants who just wanted to get right into the mess and "help".  Did I mention this stuff is STICKY? 

                   So I just get that mess cleaned up and FP finally fed when  I go to do the laundry and realize I am out of laundry detergent.  I make my own which is cheap and easy, but again, time consuming.  Just get THAT taken care of and laundry started when I step on something sharp.  I thought it was a small rock or (ewww) a piece of cat litter. (It's a zoo around here.)  Without even thinking, I tried to brush it off with my other foot.  Only to stab myself in the ankle with the little finishing nail I had actually stepped on.  So, now I have bled all over the kitchen floor.  And Cheweverything Pants is trying to help with THAT mess too.  It's not even noon.

                  Really, I shouldn't whine too much.  We didn't have to shlep to an ER or GI Lab to get the tube replaced.  Nothing was insurmountable, just tedious and time wasting.  But I did waste the most productive time of my day. (I tend to be umm, errr, a tad cranky in the morning so I keep my head down and concentrate on work.  Beats getting arrested for randomly slapping people.) This will probably end up coming out of our sleep later as we adjust our schedules to finish the work we didn't get done this morning.  Sigh, at least it's not hot today.   Then I probably would have simply burst into flames.  And then have to clean up that mess too.  Maybe, somehow I am burning off some karma.  In that case, deal.  Seems fair.  C'mon lottery winnings.

Day Seven of Feisty Pants' Captivity

                      Well, I have not posted as much as I wanted to this week.  I really do try to post at least twice a week.  I like to shoot for three, mostly for the self discipline, but that rarely happens.    And the fact that I am sure you are waiting with baited breath for my every syllable.  (What do you mean, not really?!?)  But Feisty Pants has been sick again and home all week.   She has not been kidnapped - don't believe her.  Either her sinus infection never really cleared or was a tad antibiotic resistant or it was just a new one. (You never really know with Feisty Pants.  She can go from fine to OMG call the doctor in a matter of a few hours.)  So we have been home most of the week.  I keep trying to explain to Red Chief that she is not being ransomed but she does believe me. I also try to explain that if she is a captive audience, so am I, but that does not matter either.  She KNOWS it is all a plot to bore her to death.  She couldn't go to school, where the new boy in class is cute.   She couldn't go anywhere exciting (which is defined this week as "anyplace not at home").  Worst of all, no bike rides.  How rotten can we be?  She should run away from home.

                       I shouldn't bitch too much though, really.  She is not in the hospital.   The first five years of her life, she spent  the first week (at least) of August hospitalized.  So merely spending a day at the doctor's office as an outpatient is not awful.  A Feisty Pants who is bitching and complaining is a Feisty Pants who is not too sick.  I worry when she stops complaining.  That means she is either too sick or she is plotting.  Either way, I am in trouble.  It's just that I cannot get anything accomplished.  Between running to suction or help her blow her nose or stopping her from throwing herself off furniture or, my favorite, putting her darn g-tube back in (TWICE this week), we are not getting a lot done here.  As the antibiotics kick in, and she starts to feel better, she gets more bored and antsy.   As I type this, she watching tv and kicking her father saying, "Goo, bath. Hurry. NOW."  Explaining that we are waiting for the water heater to heat back up (we have just finished cleaning)  is making no difference to her at all.  Fifteen minutes is a lifetime when you are eleven and bored.

                         But she is, thankfully, on the mend and definitely better.  So, back off to school in the morning.  Back off to her normal routine of not cooperating with therapists as opposed to not cooperating with parents.  And chatting with her friends.  And making flirty faces at the cute boy.  And, maybe, just maybe, a miracle will occur and I can get something done around here by the end of the week.  Just in time for her summer session to end and her to be boredboredBORED for the last two weeks of her summer before the new school year starts and I have the blizzard of paperwork to shovel out from under again.  Feisty Pants' idea of running away from home is beginning to have its merits...

Nothing Personal

                      So.... the physics equation as been solved.  It's another sinus infection (with, perhaps, a touch of bronchitis.)  So a new round of antibiotics- a different one in case it's a touch of resistance from the last sinus infection instead of a brand new separate one.  But that's really no big deal with Feisty Pants, so not what I want this post to be about.  Instead I want to talk about exactly how stubborn special needs kids can be. (She's been a little cranky this weekend. Can you tell?) I was reading an article on how special needs kids are much more likely to be the victims of child abuse than typical kids.  They are also WAAAAAAAAYYY more likely to be punished in school and receive harsher punishments for the same infractions as typical kids.  (Honestly.  You can look it up but then you will need to give your soul a bath.  Don't worry, we will wait here.)   That seems counter intuitive.  One would think (or hope?) that we would be less likely to be harsh and inflexible with the vulnerable in our society but statistics prove otherwise.  And that got me thinking.   Surely, we human beings, on the whole, are not that awful and horrible that we are simply bully the vulnerable because we can.  Because they are vulnerable. I used to think it was because caring for someone with special needs was stressful and since, humans are fallible, some of us just cannot handle the stress well and lash out.  (And that some of us are just awful.)  But research seems to point to the fact that it's not quite that simple.  It seems on some level to also be about misinterpreting the behavior of those with special needs.   People don't understand why those with special needs may behave in ways that will make no sense to you whatsoever.  And that led me to thinking about stubborness.

                   Case in point, this is a conversation I had with very smart eleven year old daughter.  I came down from the shower last night to Feisty Pants yelling "Ummy, C'mere. Ummy!" (Mom, come here.) She wanted to bitch about about her father. "Goo told me. He TOLD ME!!!! (meaning he scolded her)  When asked why, she told me she threw herself off the couch and got hurt. (Not badly, just a boo-boo)  After he told her NOT to do so. Which she then did because she was mad that he had made her put clothes on after her bath.  (My kids are hippies.  They'd be barefoot and naked all day if we let them.)  So I asked her: "Did you know you shouldn't do it?"  (yep)  "Did you know you would get hurt?" (yep)  "Were you just told not to and yet you did it anyway?"(yep)  So why shouldn't Goo scold you?"  (dirty look)  "Did it accomplish anything but make your night worse?"  (really dirty look)  "Was this a good idea in any way at all, hmmmm?" (dirty look and tongue stuck out at me)  That's probably NOT normal  behavior for most eleven year olds.  They'll rebel and be sassy but not by hurting themselves.  Mine will.  And it's because she cannot slam her door or post how awful we are on her fb account or text her friends that we don't understand her and are evil and boring.  It's no fun and pointless to run away from home if some adult has to push your wheelchair for you.  What she can do all by herself  is throw herself out of furniture and give us a heart attack.  Just to prove we are NOT the boss of her, and that IS normal for an eleven year old to want to do.  If it only hurts for a few minutes it just might be worth it in her mind.  Because she IS that stubborn.  Most special needs kids are.  But we, as the mere mortals dealing with them, had better learn that it's not personal.  It's not about us. They are just being who they are.  Why should any kid automatically have to fit into our molds?

                   And that is the paradox of disabled kids.  You see, these kids survive amazing odds.  They handle illnesses that most don't survive.  They have pain tolerances that put adults to shame.  They get up every frigging day and struggle against awful odds and survive and thrive again and again and again.  They do not do it by being flexible and easy going.  They do not do it by being wishy washy. They do it by having a toughness and resilience that is awesome and staggering in its scope, like a tsunami of self will and determination.   And turns them into stubborn pains in the butt.  And we, as parents of these feisty ones, had better learn to laugh and roll with it or we will drown in it.  It isn't personal.  They didn't turn it on and point at us, so they cannot turn it off either.