Sunday, October 4, 2015

YAY! October!

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

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

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

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

Thursday, September 24, 2015

Why she was wearing that stethoscope

        So I wanted to address the controversy about what the two co-hosts on the view said about nurses. It's a day late and a dollar short, I know, but what do I do that isn't.  To be fair, I suspect the women didn't have a lot of experience with nurses and what they do all day. I also suspect they simply take turns on that show saying crazy things in the name of ratings.  ('"Look, aren't we all just opinionated and fearless here, or what?")  My guess is they draw straws or mascara wands or some such and short stick has to say something asinine.
         But, in order to help allay their oh so obvious ignorance of what nurses do all day. (FFS they referred to scrubs as a "costume" and did not realize nurses, along with respiratory techs and cnas, also wear stethoscopes.  Hell, I have two sets just for Feisty Pants.) I thought I would point out some very large and important differences between nurses and doctors. So here are just a few of them right off the top of my head:
1) Doctors get all the credit- Nurses do all the work.   This is not a slam against doctors. They are overworked and spend a lot of time poring over charts, writing orders, and trying to give and guide the best medical care they can.  But make no mistake, it is NURSES who get off their butts and give that care.  They spend all day with their patients, most of it on their feet. They see the results of the meds and treatments long before the doctors do.  As a result, they always make better diagnosticians than doctors do.   ALWAYS- and the good docs know this. If you are ever at a hospital that does not give nurses the respect they deserve- run don't walk to the nearest exit.  You are not getting quality care.
2)  Nurses tend to be more empathetic.  Doctors try and care but spend all day looking for the anomaly (medicine is a science of averages) and reading the charts.  Nurses, by spending more time with each patient, get to know them as human beings.  And nurses, like therapists and respiratory techs, are focused on maximizing care and potential. That may seem like a small difference but it is an amazing difference in healing as both a science and an art.  Docs are not going to hold your hair and help you get cleaned up if you are throwing up in reaction to the anesthesia.  Or bring you coffee because they know you have been up all night with your sick kid. The doc may have sympathy but the nurses get shit done. 
3) I have only ever had a nurse say anything rude to me once.  Many years ago.  And another nurse stepped in to fix that before it got out of hand. Doctors say stupid crap all the time. ALL. THE. TIME. I have a running list.  I am surprised I have never smacked a doctor. I have never had a nurse ask me if "anyone is really in there?" in reference to FP's personality or intelligence.  Never asked me if I would rather withhold care if she ever needed intubated (IN FRONT OF HER NO LESS).  Never tried to bully me for telling them no.  Once a doctor said this to me, "Gee, you seem to know your stuff medically with this kid. Ever think of being a nurse?" I said, "No, you could not pay me enough to kiss doctor's butts all day long."  (It was a hospital where they did not treat their nurses well)  After the doc left the room, the nurse high fived me.
4) Nurses save doctor's butts all the time.  I cannot tell you how many times I have heard a nurse nicely say "but Doctor, this patient is allergic to this medication."  Or " doctor, do you think I should I ask  a respiratory tech to come take a listen to this patient breathe?" Or "doctor did you want me to (insert procedure said nurse knows full well needs to be done but doc hasn't thought of it yet)"   This is the nurse gently saving the doctor from making what could be a large mistake.  And a good doctor damn well knows it.
             Listen, none of this is meant as disrespect towards docs.  They perform great work and are vital to society.  But when the zombies rise, I want some nurses and cnas and therapists on my team, that way I KNOW we will all survive.

Saturday, September 19, 2015

A Taste of Fall

               So Feisty Pants missed another party today.  My nephew's daughter turned one .  Feisty Pants is either nursing a mild cold or a nasty allergy attack.  No fever but icky things are running out of her nose.   If it's a cold, we didn't want to give it to everyone else. If it's allergies, we didn't want everyone else's germs to turn FP's sniffles into something worse. If it's ectoplasm, she is a gifted psychic medium and then obviously movie style hi jinks would ensue at any gathering. Which means another day without cake and stuck with her evil parents.  She is understandably thrilled.  Thank goodness for the Dr. Who marathon.   That is the only thing that has kept her from firing us squares and blowing this popsicle stand of dullness.  Well, that and cooking which is had kept her at least mildly entertained.  Feisty Pants sees cooking as one big fun science experiment and she is kind of a science geek.
                So to that end, here are a couple of fun fall themed recipes we tried out today.  They kept FP chuckling and happy I think because they gave her a sense of accomplishment and not because she slipped the poison in when we were not looking. Meh, either way they are tasty. Enjoy!

Apple Ham Paninis- 
You will need:  One loaf French or Italian Bread, thinly sliced apples (macs or granny smith), sliced deli ham, sliced cheddar, sliced onions (optional), honey mustard dressing
Slice the bread in half length wise. Spread thinly with dressing.  Layer on apples, ham, cheese, onion.  Toast in panini press.  (If you don't have one just use a foreman grill or use a griddle and weigh down with a bacon press.)  Serves four with a salad or two if one of you is Goo.

Crockpot Cider-
 This one is great for a party.  And it makes you house smell amazing!!! (Beats cleaning.) You could cut it down and do this in a small pot on the stove if you like.  Just simmer it on low.
You will need: 1 gallon apple cider.  1 TBS. Vanilla.  1/2 cup honey OR 1/2 cup sugar.  1 TBS allspice. 2 TBS cinnamon.  1 can pumpkin puree (optional)
Throw everything in the crockpot and simmer until the house smells like autumn in heaven.

Fried Apples-
You will need: Five or six apples, half stick of butter, half cup brown sugar, loads of cinnamon.  (calorie counting is for squares)
Core and chop the apples into chunks.  Melt butter in frying pan.  Toss in apples, sugar, cinnamon.  Cook on medium, Stir a lot.  When apples have softened and sauce is starting to thicken, it's done.  Put on anything and everything. (I suggest ice cream or pancakes) Enjoy.   

Thursday, September 10, 2015

To whom it may concern

         Well, it's been almost two weeks since I've posted.  First we have been crazy busy trying to fit in a gazillion appointments before school started.  Then the computer died so we were sans  proper interwebs for the week.  But now we are back up and humming along and school started today so my excuses for procrastination are now null and void.  It's probably actually a good thing I did not blog earlier because the last appointment pissed me off to no end.  This pause has forced to think about what I really want to say instead of just telling a certain doctor  to eat a bag of dicks.  (I should ask you to pardon my nsf your w language. But I am not sorry.)  So instead, what I am going to do is make a list of things I wish people would do when encountering Feisty Pants. 
So to that end: 
Dear teachers, educators, and school personnel:   For the most part, you guys are without a doubt the good guys.  You have been amazing and dedicated and awesome. But a couple of things.  One, don't think my disorganization is a sign of uncaring.  Feisty Pants has parents who have ADD and are sleep deprived, we forget and/or lose everything.   If its's important, write it down and e-mail us.  That way we won't forget.  Also, Feisty Pants is a genius at making people think she cannot do much.  Especially mentally.  Never forget that this is a kid who can get out of  a car seat in 2 minutes flat and escaped a wheelchair whilst belted in in the time it took me to cross an intersection.  She also invents funny insults for family members.  Humor is a sign of intelligence.  Obnoxious, snarky humor even more so.  Oh, and a special note to administrators.  I get you don't see her as much as the people who spend all day with her so you don't see her in all her glory, but trust me this girl is COLLEGE BOUND.    If we can do this in a spirit of cooperation and harmony, great.  If we have to do it with me dragging everybody kicking and screaming along our path, I am completely ok with that.  Respect her education or listen to me bitch ad infinitum.  Either way works for me.

Dear medical personnel:   Again, for the most part you guys are pretty awesome too.  But when you suck, you really suck.  I appreciate that Feisty Pants stymies most of you.  You spend ten to twelve years of life working your butts off only to be presented with the living conundrum that is Feisty Pants.  She gets sick when she shouldn't, sails through problems that should equal ICU stays, and in general causes you to lose sleep and sometimes hairlines.  It doesn't help that FP sees you all as the enemy and at best, ignores you and pretends you don't exist in the hope that you will be insulted and go away.  But she is not just a medical puzzle or cautionary tale.  She is a living, breathing, FEELING intelligent little girl.  You need to remember that.  And, frankly, I am NOT NOT NOT interested in your fears.  Don't give me dire predictions to "make me see how serious it is".   I ALWAYS take her health care seriously.  I just don't freak out easily.   And I lose respect for you when you do.  Also, tell all your medical brethren that the next moron who says a dire prediction in FRONT of the 12 year old girl, or in fact, talks as if she is not there in the room with you at all, is getting one of two things.  I will either smack you one or mail you a bag of phallic shaped gummies with a note that says eat this.  (depends on whether I have bail funds at the moment..)  You have been warned.

Sunday, August 30, 2015

In which Feisty Pants is bored bored bored

                 Well now, we are well into our longer summer break.  Three weeks this year instead of two, and Feisty Pants is kind of done with it.  Sunshine is boring.  Rain is boring.  TV has gotten boring.  (Not enough spooky yet.)  Walks are now boring.  Goo is very boring.  I am the avatar of boring.  Hippie Pants works all the time so she is really boring.  And Dinky Pants just chases Cheweverything Pants around and that has gotten boring too. The only thing that is not yet boring are old videos from the eighties.  Apparently, the Beastie Boys are awesome.  And I am a liar liar pants on fire when I say I was a fan of them when I was a teen because I have never ever been that interesting. EVER.  Who am I trying to kid here?  I was born old and boring and  Feisty Pants is not fooled one bit by my lying shenanigans.
                    So, in order to try desperately to entertain the littlest rebel in the house I am back to scouring the interwebs for something educational and fun in order to provide at least enough brain stim to keep her from singing opera at three am. I have gotten desperate enough to let her sing but until you have heard a kid  with CP sing on both the exhale AND the inhale you have not really understood opera. The neighbors don't seem to understand opera at all at three am and want to know why we are strangling cats.  It gets a wee bit awkward.  To that end, here are three new activities I hope help to keep your feisty ones from breaking into arias in the wee hours of the morning.

1) Pumpkin cake (SUPER EASY)- this one has been making the rounds of FB as of late.  It looked easy so we tried it.  Feisty Pants gives it two thumbs up.
You will need- cake mix (yellow is probably better), 15 oz can of pumpkin.  That's it. 
     1) Mix the pumpkin into the cake mix  . Batter will be thick. 
     2) Spread in a greased  9x12 cake pan. Bake at 350 for about 35 minutes. 
     We sprinkled cinnamon and allspice on top because pumpkin SPICE dammit.  You might want a frosting.  (We didn't bother.)   

2) Bubble blowers- you will need some plastic soda  or water bottles, duct tape , stickers (optional), a large dish or pie tin, bubble liquid.  
     1) Have a grown up cut a straight line cut about halfway down the water bottle.  You are basically cutting the bottom half of the bottle off. (recycle or reuse the bottoms but keep the tops) 
     2) Wrap a piece of duct tape around the edge of the cut so it is not sharp.  The, kids can then decorate the bottle more duct tape or stickers or what have you.
     3)Pour bubble liquid in the dish.  Place the large opening into the liquid.  The kids can blow bubbles by blowing on the spout.  Repeat as necessary until fun ensues.

 3) Carbon dioxide balloons- you will need balloons, water/soda bottles, an ounce of water per bottle, a tsp of baking soda per bottle, lemon juice (or vinegar) and a straw. 
     1) Stretch the balloons out so they will inflate easier.  
     2) Add the water to the empty bottle, add the baking soda and stir with straw until dissolved. 
     3) Add lemon juice (or vinegar) and quickly cap bottle with balloon.           

Saturday, August 22, 2015

Special Hot Dogs

                       Feisty Pants woke up around six thirty this morning. Not that unusual for her.  She is much more of a morning person than I ever will be.  I blame her father.  Left to his own devices, Goo would be an early riser too.  Hippie Pants and I are more "children of the night" types.  But I digress.  This isn't about what weirdos Goo and Feisty Pants are (and you cheerful early birds are, indeed, weirdos).   This about what Feisty Pants said to her father at the crack of "what the hell time is it?" and it's implications.
                       Feisty Pants woke with her usual call of "giggle...giggle. GOOOOOO..giggle giggle"  There is just something odd about people who wake up giggling.  It is not normal.  Normal people wake up saying "Crap. I'm awake. "   Feisty Pants uses cheerfulness as a way to rebel, I swear.  Anyway, so her father goes to her to get her dressed and her day started.  He asks casually, "What do want to wear?"  She answers, "Summting warm because I'm a special hot dog."  "You are a special hot dog?"  "Yes ! giggle giggle giggle..."  So they decided on PJ pants and a t-shirt.  While dressing her, he said, "So exactly HOW are you a special hot dog?"  (wait for it...)  Feisty Pants looked him dead in the eye and says, "Because I'm CHILLY!!!!!" and then laughed so hard she almost had to be suctioned.
                      I did not find this all that unusual.  Feisty Pants is a big bottle of awesome sauce with an obnoxiously cheerful, quirky sense of humor.  And she has made up jokes before.  She once told her class that her sister was adopted and she knew it because her sister was a freak .  But today was the first time I was struck by the implications of it. You see, Feisty Pants has VERY garbled speech.  And her face is not all that emotive.  Both characteristics are caused by the CP.  Sometimes, it takes her a LOOOOONNNNGGG  time to get control of her body and make it do what she wants, like gesture or sign or speak.  Again, CP.  Unfortunately, human beings don't realize how quickly we communicate.  So when she doesn't answer right away, people move on and assume she CANNOT do it or she is not in there or she simply is cognitively incapacitated.  BTW, I have noticed that the more intelligent the individual is, the more  likely they will assume Feisty Pants is not smart.  It's like they assume everyone will communicate as quickly as they can. It's so frustrating to have to explain to a seemingly well educated person, like, say, a doctor, that she is indeed in there. Especially the second time I have to do it.
                     I am reminded of a story told by the parent (whose name I cannot remember) of a son with CP who said he was told his son was not cognitively intact when the dad knew he was.  He finally took his son to a group of scientists at a college looking for a way to help him communicate.  (This was years ago before good alternative com devices were around.)  The scientists said, "How do we know he is in there?"  The father said, "Tell him a joke."    They did.  The son laughed.  The scientists helped build him a device.  So humor is absolutely a sign of intelligence. 
                    So today, my "neurologically devastated"  daughter "who will never do much"  (actual quotes from doctors who should know better) made up a corny joke to tell us.  And I feel like a million bucks.  Or a special hot dog.  And the doubters can all go suck it.        

Saturday, August 15, 2015

Magic Moments

             So, today I did not get to go to a wedding.  I also didn't get to go to a memorial service.  And although they probably both involve cake somehow, the wedding was likely to be more fun.  The wedding was out because Goo had the memorial service (for his uncle) and it takes two to bring Feisty Pants anywhere.  The memorial was out because it is very hot and humid today, which means Feisty Pants is cranky and wheezing.  Since I didn't know the a/c situation at the service and there would be lots of people with all their germs (you all have cooties where Feisty Pants is concerned)  and their perfumes and deodorants and various chemicals we all carry, we decided it was best to stay exiled here in air conditioned Feistypantsland. Missing a gathering is less stressful on everybody than ending up sick because of a gathering.  Parents of feisty ones miss all sorts of gatherings due to both physical and emotional logistics.   Sometimes we miss them from simple exhaustion.   But make no mistake, we MISS them. It's not personal, I promise. Feisty Pants was not thrilled by our new assassination attempt.  (She is sure we are trying to kill by boring her to death.) However, rather than sit around feeling bored and sorry for ourselves, FP and I have decided to think about all the things we do get, that you probably never will.
              I'm not even talking about the crazy ones.  Not the bet you never saw someone do cpr on your kid ones.  Not the how many helicopters has your three year old been on ones.  (Feisty Pants used to be like a mini Vietnam vet, she would get frightened at the sound of loud lawn mowers.  We'd have to cover her ears if a helicopter went by.  She thought they were coming to take her away.  Again.)   Not even the doing the happy dance because you found a vending machine with peanut m and m's at three am ones (yay protein...) or because the soup in the hospital cafeteria was actually hot and tasty.  No, I mean the everyday things that amazing and astounding when experienced by someone who has to see the world in a much different way than you or I ever will.   One of the best parts about being a parent is experiencing the world brand new through your kid's eyes.  When the eyes belong to a feisty one (literally or figuratively) it will absolutely blow your mind.
               When Feisty Pants was about 17 months old, I took her outside in the rain.  She was amazed.  She has cortical visual impairment (her eyes work but her brain doesn't put the picture together well).  She understood water comes out a faucet but the idea of water coming out of the sky?!?  Holy Cannolis was her mind blown.  She couldn't for the life of her figure out where it was coming from.  It was magic, pure and simple. For fifteen minutes, I was a wizard and we danced in the rain.
                Or, when FP was in the NICU, the nurses would tell me when her sister had arrived on the floor the NICU was on.  NICU's are always hidden away behind locked doors and hushed hallways.  Less commotion for fragile babies that way.  Hippie Pants would arrive with her father when he got out of work.  (I went over about noon most days)  The nurses would tell me "Your daughter is getting off the elevator now."   I assumed they had cameras or something.  Turns out they didn't.  The nurses were watching FP's stats on the monitors.  Her breathing would slow but her heat rate and sat rate would rise.  All signs of being alert but calm.   The nurses said siblings did that to the babies.  Not the moms and dads, siblings.  Almost like they know their teammates.  
               I know of parents of kids with autism who talk of magic moments when the kids are happy and calm, usually concentrating on exploring the world in some minute detail.  They talk about watching their kid and being in awe of exactly how at peace they are.
              My sister, who had Down Syndrome, never met a human being she could not make a connection with or find common ground. (Hi Marc, wherever you are)  Most mornings, I cannot stand myself without three cups of coffee and a splash of holy water.
              Well, those are the magic moments we thought of to while away a boring stuck in the house afternoon.  What are your favorite magic moments with your unique visionaries?  Share in the comments.  Tell them to your friends or kids.  Go on, ask them what their moments are.  Get the conversation started.  You will learn something fun.