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.

                       

Physics

             Sigh.... double sigh... sigh again.  I knew this week was going too well.  It's not too hot.   The nights have been cool and sleepable.  (Shut up -that is too a word.)  Our only appointment this week was canceled. No one threw up.  Nothing broke down. Nothing burst into flames that wasn't supposed to burst into flames.  We got some bike rides in.  We got a few chores done.  We even started to catch up on paperwork.  We only had to deal with one state agency and the person at said agency was pleasant, prompt and efficient.  I've only had one nagging computer issue. (This paragraph will be in a smaller font for no reason I can fathom, at least on my machine.)   All this good stuff of nothing new should have been my clue.    Of course Feisty Pants would develop some new tic that makes us all nervous.

             When you are a special needs parent, you get very, very good at the big things.  The oh my god the helicopter's coming things.  The call 911 and get the oxygen going things.   The she's been transferred to Timbuktu where's my suitcase things.   You get really good at the tiny things.  Paint in her hair?  Clap for her- it meant she actively participated in school.  Coughed ick all her shirt at the store?  Hit the dollar store for a tee and change in the car.  We can always tie dye it later if it's ugly.  Said a new word clearly?  A new word that is NOT um, err, mother superior?  Calmly explain that swear words are for saying to speech therapists.  They'll appreciate the effort it took.

                    What you are not good (at least what we are not good at) at are all the weird, in between things.   Is it a minor cold or the start of pnuemonia?  Is she crying due to allergies or is she about to have a medical crisis?  Is she hiccuping because occasionally human beings do that or because her stomach meds need to be changed?  In this case, is she getting sporadic low grade fevers because she is working on molars (happened before)? Or is she getting them due to microaspirations due to not swallowing well (happens occasionally)? Or is she reacting systemically to an allergen in her environment (yup, we do that one too)?  Is she just been physically stressed due to her last illness and is what one doctor called "temporarily temporally instable" (seriously)?   OR, since she just got off antibiotics, have we gotten into a superbug and the antibiotic didn't work and she is about to get really sick (been there too, dammit)?    We cannot tell right now.  And will not know until she either gets better or gets worse.  Sigh.

                      So here we go again.  It's time for special needs parent physics.  You'll sit around and stare at your kid and do math at five gazillion miles an hour in your head.  Do I have cab fare on me?  Is the cell phone charged?  Where's the med list? Is it up to date? Is that a cough? What's her sat rate? What's her temp? Is she cranky because she's sick or because I'm annoying her every five seconds?  Do she look pale to you?  Do her eyes seem less bright? How about now?  Now?  Is she sleepy because she doesn't feel good or simply because it's nighttime and I've bugged her alllll day?  And Feisty Pants is feisty and eleven, so she will milk it.  "Don't feel good, need a donut"  "I'm sick, put on dizzy (disney)".  I'll be lucky this weekend if I'm not the thing bursting into flames.