Yes, Virginia...

               So, I guess we call Christmas a success this year.  No one was in the hospital. (Last year, my mother was in and she is still pissed about that.)  Both my brothers could make it. (We do Christmas at my folks.)  The kids seemed to be having a blast.  My nephews got helicopters and cameras that seemed to occupy them.  A note to the world- NEVER tell a six year old with a new camera you don't like having your picture taken.  They instantly morph into paparazzi of the most ardent sort. At last count, he had over two hundred pictures of me.  Feisty Pants got some crazy doll that flies.  (It's like a cross between a fairy and a fragile glass seeking missile)  Best of all, the six year old shutterbug brought MAGIC REINDEER CORN.  Which Feisty Pants had asked for.  Apparently, it's a thing now.  His had glitter and everything.  OK, it's not really glitter. It's the MAGIC, duh.  Or so FP informed me.  They had a blast spreading it out on my parents'  lawn.  The children later pronounced this a successful mission as a few hours later they peeked out the patio doors to find deer in the backyard eating it. (I did say it was Mayberry.) And there was enough food to feed an army.  And enough cookies and goodies to give all of Pennsylvania type 2 diabetes.  And, it snowed on Christmas Eve.

                 So, so what if there were ten people sharing a house with one and half bathrooms.  And so what if what one those people is VERY pregnant.  And so what if Goo and I didn't get much sleep.  Especially Goo.  So what if Feisty Pants discovered boys have cooties.  And her new favorite phrase is "mack you one" (I'll smack you one.)  So what if all the adults discovered they are really still 12 years old inside when playing scattergories and the letter to start all the words is F.  So what if there was no internet connection and I came home to 1500 emails.  And 35 phone messages.  And a dead mouse in the foyer. 

                   The absolutely most remarkable thing about this Christmas is that it wasn't remarkable in any way.  When you spend your life as that kid's mom, the one who needs a million exceptions to every situation, the one for whom every action is a million times more complicated, the one whose life is filled with weirdness and medical devices and personnel; it's heavenly to be boring and hectic and normal.   To find out my kid gets a little bratty if she thinks she is not being watched..  To notice my nephews sometimes dismissed her because she's a GIRL with real live girlcooties not because she's disabled.   To have to reprimand her for threatening to smack somebody instead of trying to pull out her g-tube. So, yes, Virginia, there is a Santa Claus. I know this because he brought me a big bag of nothing unusual this Christmas.  And I am so very grateful.

Last Minute Gifts

             As I sit in my very comfy house, whining and bitching about all I have to get done before I leave to go to my folks, perhaps I should take a few moments to NOT be a complete a-hole.  Don't get me wrong.  This is not a vacation.  Moms never really get a vacation to begin with and with Feisty Pants, you're actually just working from a new location.  It's a business trip.  But I am going from one comfy house to an even comfier house with food  you would give your right arm for and the only fee is watching my mouth and trying not piss off my conservative relatives at the dinner table.  (I was an obnoxious smart aleck of a little kid, and as the youngest girl of my generation on the larger side, probably a bit more indulged than was good for teaching me manners.)  But I thought that rather than sliding into any more of an annoying funk (whinewhinewhine I have too much to do, packing is haaaard) perhaps I should share some favorite charities.   They could use the shout out.  I could use a little sunshine for my soul.  You can always use them as last minute gift ideas. (Most give you an option to print out a certificate stating that a donation has been given in your recipient's name.)  So in no particular order, here are some of my faves:

 

 

The Greater Goods Site-  I've mentioned this one before.  They are made of awesome.  Anything you buy supports their work.  And they have a list of specific charitable actions to support. Just search the column on the far left for "Gifts that give more".  Feed a horse for two weeks. Vaccinate a certain number of kittens or puppies. Fund a clinic etc.  Some even let you pick the exact dollar amount.  And they all send a link to a print out to put in a card if it's a gift. This link specifically goes to the Hunger Site, but you can follow the tabs across the top to better direct where the money goes

Greater Good Store

 

Covenant House-  a great organization for homeless youth.  The things homeless children go through is awful.  They are preyed upon in ways that would give you nightmares and yet, when we see a homeless teen, we think delinquent.  What we should think is helpless.  They help those children that we as a society have thrown away.  Even if you never give again, give here.

Covenant House

 

 

Kiva-  They specialize in microloans to the poor on five continents.  You can absolutely change a life for the better forever for as little 25 bucks.  They work with microfinance organizations worldwide and 100% of your donation goes to the loan.  They even send the gift card (via email) to your recipient for you.

Kiva

 

Saint Judes Childrens Research Hospital-  they do good work, save children and never charge the families.   What more do you need to know?

St. Judes

 

Shriner's Hospitals for Children-  What Saint Judes is to cancer, Shriners is to orthopedics and movement disorders.  Here you'll be helping kids like Feisty Pants.

Shriners Hospitals

 

 

Donors Choose-  dedicated to helping kids by helping teachers.  You pick an individual project to donate to.  You get updates from the teacher on progress.  You often get the best thank you notes (with pictures) when the project is accomplished.  This gives back several times over.  Once when you give, again when the project is completed, and in the long run, the community as a whole benefits.  When you help kids, it pays us all back.

Donors Choose

 

The Impact Project-  a local Southern Tier organization.  They are a faith based group of volunteers who want to share their beliefs about religion and fellowship by doing good deeds.  They specialize in fixing and adapting homes for the elderly and the disabled.  They are awesome and really, really good at what they do.  (And since the whole point of religion is commune with the divine by learning compassion for each other, it heartening to see people just, well, get it.)

The Impact Project

 

So there you, go.  Last minute gifts for you if you need them.  Perhaps a little good karma for me.  Definitely good karma for you if you give.   Spread the love, it will come back multiplied.

 

Superglue

        So I am trying to write a few posts ahead of time.  We will be at my parents' place for the week.  They live in Brigadoon/Mayberry/the twelth century.  So I probably will not have an internet connection.   So, I am gonna try to figure out how to post on the fly.  I think it will be easier if a few of them are written before hand.  Luckily, it's Christmas time so I have a bazillion ideas for that subject.   (My new fave idea- telemarketers bugging you?  Hand the phone to the nearest young child and tell them its Santa.)

       But all this bustle and hurry makes me think of the pressure we put upon ourselves at the holidays.  So,  I thought I would make this post be about pressure and memories.  I think most parents put a lot of pressure on themselves to make the holiday just so and very special. It's even worse if you have a disabled kid and already start out halfway to guilt city to begin with.  Now you want to make the holiday super duper special. Eff that nonsense.  (Elf that s&$t?)  The kids will let you know what's special and it's not usually the fussy stuff you're losing your mind trying get just so.  My kids love lights and holiday music and Christmas specials on tv.  Preferably with popcorn or roast chestnuts to stuff into their craws while watching.  Nothing else required thank you.  Give them Charlie Brown or Prep and Landing and the tree lights on and a bag of popcorn  and all is right in their world.  Feisty Pants refers to White Christmas as "that nuggle movie"  (snuggle) because she makes her father cuddle with her while they watch it.  They have seen it together 25 times.  She is ten.  It really isn't ever about the gifts.  And if it is, we have failed somehow.

           And just to prove my point, I would like to share my favorite Christmas memory.   It is brought up every Christmas dinner, much to the delight of the youngest at the table and my father's chagrin.  My mother is allergic to pine trees.  Every year, she would break out in hives decorating the tree.  But she didn't like the artificial ones. Not real looking.  Finally, one year, she found this gorgeous artificial tree. It even smelled of real pine.  We had it forever.  Then one year as she was putting up, one of the bottom branches broke.   Superglue had recently come out.  My mom decided to glue the tree branch.  (Each branch fit into the trunk invidually. Said branch had simply snapped in half.) So she had my dad lie down on his stomach with his arms around trunk of the tree. (The tree was up except for this last branch.) He held the branch in place and my mom glued it. He held it for about a minute to set.  My mom goes, "Let go of the branch, Jack."  Nothing happens.  My mom said, "Let go now,  Jack"  He said, "I can't" She goes, "Quit kidding around now!"  To which my father replies, "You've glued me to the damn tree."    She had. Hijinks ensued.    Nothing she tried would unstick him.  He had to be cut off with a razor blade.   Everytime he said "this is NOT funny"  my older brother and I would fall down laughing. (In retrospect, we were evil children.) So, see, it's not about the presents, or the perfect table, or Martha Stewart's favorite cookie recipe.  It's about making your kids and nieces and nephews squeal and howl at the idea of their dignified Grandpa being superglued to the tree. So, a toast to Christmas please.  Raise your glass and say to hell with perfect.  To hell with pressure we don't deserve.   Here's to a Christmas with laughter and food and just enough superglue to make it interesting.

Magic Corn

         So my kids are nuts for Christmas.  I know all kids who celebrate Christmas go through that stage.  The difference is mine never grow out of it.  I blame my side of the family.  I would blame genetics, but I am an adoptee so no luck in finding a scapegoat there. hurrumph  It has to be nurture.  My mom's family is Pennsylvania Dutch. A big PD family.  (not kidding- I have over 40 first cousins- not second, not third, none of that removed stuff)  You've all seen  My  Big Fat Greek Wedding?  We have My Big Fat German Christmas.  My mother put a second oven in her house just for holiday dinners.   And now Feisty Pants has caught the fever.  So we have to get the lights lit BEFORE Dark.  We have to make cookies at least twice a week.  (C'mon Ummy, it's kismass)  And, she has informed us, we have to find "magic corn" for the reindeer, otherwise how will they fly to the next kid's house, hmmm???  And none of our carrots nonsense, thankyouverymuch, she saw Santa Claus is Coming to Town so she isn't fooled one bit.

          I must admit it's kinda fun, watching kids discover anything new and amazing to them.  And, it's even nice in Hippie Pants' case, to see them not become jaded and cynical about holidays.   It's cute watching FP get all excited about her new ugly sweater for her class' sweater parade and how she will get to wear pajamas to school her last day for the school-wide pajama party.   (Whoever thought that party up for Christmas is a genius!  The kids wear pjs, eat popcorn and watch movies for the party.  They are all excited and no parent has to lose their mind over making cookies.)  She is especially excited because she was afraid she was going to miss Christmas because she was in the hospital last week.  (She told us this after we came home.)

           So, I guess I have to admit I am looking forward to it too.  The kids are happy and chatty.  The house smells like it should (cookies and bread instead of our usual failed chemistry experiments)  It is cold and snowy ( That always cheers me right the hell up)I am sure by the end of the week, I'll be crazed with trying to finish baking, and pack to go to my folks, finally be done with gifts, not to mention wrapping and cards and relatives and phone calls.  And usually something really nutty that makes for an amazing story years later when its finally funny.  (Not kidding, I have dozens. )  But right now, it's quiet.  And there is snow on the ground.  And the big kid has left to go home after watching Christmas specials while cuddling with her sister.  And the little one is asleep.  And Christmas music is playing.  And the house smells like the bread Goo is baking.  And it's ten degrees outside, so no mildew to make Feisty wheeze. It's a grand in between moment.   And I am going to make some tea and savor it. And try to figure out some magic corn.  Before my mother blows up something in her kitchen for the second time this week.  (I wasn't kidding about those wacky stories.)  I wish you a moment of calm in the chaos.  Peace.

Falling of the wagon

        So, we have fallen off the wagon, so to speak.  Feisty Pants has been in the hospital all week. Sigh... It always sucks.  I shouldn't bitch too much.  She wasn't transferred out of town.   She never stopped breathing. There were only two IV placements. It was simple in and out type of deal. A few days on an IV antibiotic and home to finish recuperating.  I am grateful.  We have some scary, scary episodes. This was NOT one of them.

        But, sigh, it never gets easier.   It never gets easier holding her hands while she cries as they stick with her needles.  It is never fun, hearing her beg to go home.  I hate not being able to pick her up or have her sit on my lap because there are too many tubes and wires tying my child to the hospital bed.  I can never get the sound of my youngest and more vulnerable child saying "please stop, please stop" to some medical procedure she hates out of my head or soul.  And, I don't even have the luxury of resenting those who do this to her.  They are, for the most part, dedicated professionals who take great pride and great care in giving top notch medical care to children.  And, trust me, nobody, not even the jackasses, goes into pediatrics for the money or their ego.  When we hit the ER this week, we had nurses, therapists and phlebotomists from all over the hospital swinging by to see "our girl"  and make sure she was getting good care. 

         And now we are home.  In time for my in-laws  early Christmas celebration this weekend.  In time to try to finish our gift making binge.  In time to try to run a marathon of finishing for the holiday.  And to let Fiesty Pants' bruises from the needles heal.  And to let her lungs finish healing (it was pneumonia, probably viral to start -viruses just kick her butt)  And mostly, in her mind, to give her one good day of snuggling on her father's lap watching whatever the hell she wants to because she has damn well earned the right to monopolize the tv tonight.  (It's apparently going to be a Cops, Bigfoot, Dr. Who kinda night.)

         So, in case you ever wonder why we spoil our feisty ones.  In case you ever wonder why we seem to be raising little Bond villains.  In case you wonder why we let them get away with some crap we would not tolerate from anybody else for even one moment.  It is because we watch our very vulnerable children go through a million little hellish moments of one kind or another.  Often, one right after the other.  And when we finally get to leave, they look their torturers right in the eye and say "thank you" for their help.  It all just seems so damn unfair, you want something to go their way for a change.   

For that moment when they tell you...

      So, the universe has decided that you have the parental skills (or least the potential) for raising a disabled child and has handed one to you.  After the first reaction of "Wait, what?!? Who, me?!?", what do you actually do?  Some advice if you don't mind.

               First, take a really deep breath.  Get used to feeling of having the rug pulled out from under you.  It's gonna happen a lot- in both bad and good ways.  You will learn to ride it out. You will find a new normal.  Try yoga or meditation, if you need to.  (Although any exercise will help.)

               Next, go ahead- mourn the death of your expectations.  We all have them for our kids.  Disabled or not.  The child you thought you had either did not exist or no longer does.  Acknowledge it, and then let it go.   What you have instead, is something different and much more precious.  If you allow yourself time to grieve for a little while, you will be able to see the beautiful unique child you actually have.  I have two daughters, the youngest one is disabled.  I am actually much more relaxed with the disabled child and I suspect that makes me a better parent to her. Seriously, Hippie Pants is a genius but artsy and flighty.  I wish I had allowed her to be herself instead of ALWAYS stressing about her grades which were never a true reflection of who she is. (Sorry Hippie Pants, but you were my learning curve.  Think of it as the good karma you earned for your little sister, if it helps.)

               Now, go get some different expectations, not the ones you thought you needed like  crawling at x number of months, piano lessons at x years.  GET BIGGER, BADDER, BETTER ONES. SERIOUSLY.  Think happy, healthy, moral adult.   You are not raising a disabled child.  You are raising an independent bad ass adult.   Disabled child is simply the raw material you were handed to do this with.  Make bad ass grownup your mantra.  You're gonna need it when dealing the well meaning morons who you will be trying not to smack all the time.

                  Next, understand that people come in three catergories when dealing with the disabled.  This is most obvious when dealing with the medical profession or education.   They are the following:

1) "OMG that child is disabled. Freak out now. This is not a drill"  -  These are well meaning idiots.  They are the doctors who want to immediately jump to the most dire procedure.  The social worker who wants to help you find a boarding school when your kid is a few months old.  The other kid's parent who doesn't allow their child to ask questions. Sometimes its the drama queen parent of another feisty child who wants you to participate in their anxiety.  Learn to have patience, but call them on it.  They need an education in not being timid.  Most, of all don't let them freak you out.  Their fear can be contagious.

2) "What do you expect?!?  She is disabled after all." - There is a special place in hell for these complacent bastards.  These are doctors who say stupid things like "I'm sure you are okay with anything that stunts her growth"  (No, Dr Mengele, I am not okay with ANYTHING that could limit my child's potential.)  Or, the supposed learned educator who decides because she cannot reach your child, there is nothing to reach for. (Threatened to go to court over that one.)   Always nail these jerks straight to the nearest wall.  Better yet, take their proverbial heads home and mount them on pikes in your front yard as a warning to next jerk who is willing to do a half assed job with, for, or around your kid.Worst of all, sometimes its YOU.  ("I'm sure you tried your best, honey" you say when you kinda know they didn't but are too tired to argue.)  NEVER drop your guard on this one.  Complacency is not your friend.  Disabled people have to over come barriers we don't even normally see.  They are gonna need  strength for that fight not crippling sympathy.  You do NO child, special needs or typical, any favors by not teaching them to shoot for the stars.  So what if they fail?  They'll learn to pick themselves up, dust themselves off, and try again.  It's called being a person. 

3) "Umm, hi, I don't know what to do here..." - This is everybody else not in the two above catergories.  They are actually kind of ok.  Really.  I am more surprised by the number of people who turn out be decent human beings when given the chance, then the number who don't.  We are, at our most basic level, simply banding primates.  And that's actually a pretty cool thing.  People who simply roll up their sleeves and try to help out.  And be cool and inclusive.  The ones who get we are all trying to muddle through together.  They may say silly things or step on your toes occasionally, but for the most part they are helpful and kind.  Be patient and kind back.   You owe your kid a chance to get to know and be part of this crazy world.  And these are the ones who will let them in.

                  Oh, and a few last words on this.   We are all freaks in some way.  Not one of us is perfect.  Your child's not perfect is no better or worse in the long run than anyone else's not perfect.  Learn to dance to your own damn rhythm and let them dance to theirs.  Also, get one healthy vice; (notice I said HEALTHY) coffee, crossword puzzles, knitting, yoga, blogging, competitive ironing, underwater basket weaving, whatever.   Something that is all yours.  Something you can do anywhere you are.  It will let you not get swallowed up when things get crazy.  Good luck and remember to have fun with the weirdness. 

                                          

Gifted

          So this year, we are trying to have a different sort of Christmas.  And so far, to my surprise, I think we are managing it.  Money's tight.  (If you have a disabled kid and aren't actually a robber baron, money is always tight.)  And not just for us. It seems tight everywhere this year.  And I for one, am sick to death of rich greedy people trying to equate spending our money with patriotism or caring.   Especially since it only seems to be about those things when flowing into their coffers. Jacob Marley, where are you when we need you?  Anywhoo, all those stores being open and making their employees miss Thanksgiving is kinda the impetus I needed to opt OUT of the annual feeding frenzy/hunger games of shopping.  So me and Bob Cratchit and Tiny Tim  (HP and FP) are making as many of the gifts as we can this year.

        We usually try to make some of them.  Usually with results straight out of some wacky sit-com.    There were the fudge pops that were supposed to melt into your coffee but melted at room temperature.  Candles that smelled like rotting crayons.  (Is zombie a yuletide scent or is it more autumnal?)  Body oils that smelled like flowers and feet.  (My friend Celtic Pants took to calling me the mad alchemist that year.)  The six dozen peppermint and vanilla candy cane shaped cookies that took FOREVER to make and actually came out great- until my dog ate them.  The earrings with posts that were actually not made out of sterling silver as promised by the craft store clerk and gave the wearers a rash.  Really, other families have carols and hymns, we have a laugh track and slide whistle noises.

         But, so far so good.  Two of our projects have been successes.  We have high hopes for the third and fourth ones.  The gremlins must have gotten a little lost.  We're about 3/4 done with our gift list and not had to scrap anything and start over or call 911. I am calling it a success.  Eff perfection. God and the Universe are gonna have to grade me on a curve.  If they wanted perfect, they wouldn't have given me children AND adhd.  Besides Fiesty Pants is in love with cooking (amazing for kid who doesn't even really eat normally) and some of what we are doing is mix of cooking and chemistry.  So if I blow up the kitchen, I'm just gonna tell people we were trying to provide brain stim instead of shopping.  And if it works, I will never tell a soul that I simply learned to type EASY in big capital letters when I googled diy and homemade gifts.  Shhhh... it'll be our little secret.  

 Okies, so Goo (the hubby) is a genius. And so is my dad. Seriously.  For months now, I have wasted an awful lot of time  cleaning out and hating on Fiesty Pants' food pump.  The bags cannot be cleaned properly without wasting a lot of my day. And then lo and behold, they figured out how to bypass the safety feature.  (Don't lecture me on why we should not bypass a safety feature.  This stupid feature caused me to lose sleep and that's WAAAYY more dangerous, trust me.  My friends were starting a bail fund for me just in case.)

         So, I am gonna try to post pictures on how to do it.  My dad gets the credit on figuring out how we should be able to do it.  Goo figured it out from there.  So, for all of you stuck with this model (let's again call it  Schmangaroo Schmoey) here is how its done.

  When the pump is done and you want to clean the bag. Remove it from the pump. Rinse the bag itself several times with hot water. Then refill partially with hot water.  Find a place to hang like this:

       
Note- the end needs to drain into a sink. Otherwise you're back to wasting time.

Take the round part of the tubing.  I call it the safety doohickey.  But Goo is a computer tech and therefore anal about correct terms and says it is a safety valve.  Turn it around to see the safety valve.    Carefully with the tip of a butter knife (NOT NOT NOT a sharp knife), turn it 1/4 turn (90degrees)      

from this:

to this:

Allow the water to drain out completely.  Then simply reverse the turn back to the original position- like the second picture shows.

Easy peasy.  And  I didn't have to kill any nerdy tech types over it.  Just kiss the one holding a butter knife.  Huzzah!!!

Whew...

             So, after the craziness that was last week I thought perhaps we should take a breath and pause for a moment as it were.  From Turkey Day to Black Friday to Cyber Monday.  What an orgy of consumption. Whew.  Glad that's done.  It seems to bring out the worst in us.  I feel like we all need a good shower and to go to bed and think about how we all behave.  So, what's the emotional equivalent of alka-seltzer?

Seriously, anyone?

             Hmm, well barring anything better, perhaps the good old  standby of some gratitude for the universe.  So here's my latest round of much too belated thank yous.

               Thank you.   Thanks to  all those people whose jobs make them have to be available on holidays- nurse, doctors, waiters in restaurants open on holidays, kitchen staff in nursing homes, policeman and fireman and all those who sign up for the job knowing they will be at work or on call on Christmas and New Years and every other weekend and holiday. It's often not fair, but you never show it and often make other families holidays possible at all.   And especially thank you to those who should not have ever been asked to work on a holiday.  To all the retail workers and shift workers who have to not spend a holiday with their families because of someone else's greed.  It is DEFINITELY not fair and you deserve better.  (Personally, I am boycotting any store that was open on Thanksgiving until waaayy after the holidays perhaps permanently.  I don't want you to do well, you bunch of Scrooges.  My dollar may not count for much, but I sure as hell am gonna vote with it)  And to those stores who did choose to stay closed on Thanksgiving, THANKS, it's nice to see businesses act with some class. 

              And speaking of class, thank you to all those who work paid and unpaid for non-profits.  Whether anyone agrees or disagrees with your cause or charity, you are working with your heart and soul to try to make things better and that says something good about your intentions and soul.  I especially want to thank those who work for organizations who do e-activism.  You guys work really hard, for free or smaller salaries than a corporation would offer, all so annoying nags like me can try to do our part and make the world a better place.  With every petition I sign or link I post, I think of you guys who made it possible for me to have it so easy.  I don't even get out of my pjs or put down my coffee, to do my part.  Thank you so much.

                 And thanks to all those people in government service who work really hard and never get thanks from anyone.  When you mess up, everyone rides you forever and never lets anyone forget.  But when you do well, things run so smoothly , we don't even notice you are there. Meanwhile, the legislators, who work way less than you and get paid more, act like you are incompetent to make each other look bad.   I don't why you are all not bitter.  But time and again, you simply do your damn job without asking for thanks.  Thank you for making civilization run smoothly.

                  Most especially, thank you to volunteers who work in soup kitchens and homeless shelters and hospitals and places like Ronald McDonald House.  Thankfully, I don't know what it's like to be on the streets, but I do know what its like to be suddenly hours away from home with no real place to stay or idea of where to go for a meal or a shower or a bed.  Leaving a hospital after a reallllly long day of watching your kid be seriously ill and then finding a quiet room with a bed is like finding Shangri-La. 

                   More than anything though, thank you Universe.  Thank you for being wild and wacky and awesome.  And most of all, thank you Universe, for the fact that we were not in a hospital or Ronald McDonald House or crazy mall or ambulance or any of those places that have to stay open on holidays.   Thank you for arranging it that I got to stay at home and whine about cooking and the loud cats and my nutty family.  It was a good holiday.  And thank you for reading this. 

Morality

              Well, now, had an interesting conversation with Feisty Pants the other week.  She was happily sitting and watching tv when she burst into tears.  A cry /whine when she is upset or angry is typical, actual tears are not.  FP is one tough little kid. So we went running to see what was wrong.  When asked she said she was awful. Actually, what she said was "awful. ooooey oooey oooey."   That's her word for ouch.  We said "what's wrong?".  She said, " 'mergency.  Need a donut".  Both my kids are Daddy's girls, but this is getting ludicrous.  Especially since, because she made her father laugh really hard, she got an emergency donut.  And now gets an emergency donut every week at the grocery store.  Well, until this week, when FP informed her father that she needed an emergency cupcake.  Her sister, however might need an emergency donut so we should pick one of those too.  What is it about ten year olds that they are all such cunning little buggers?

                  I do worry with FP that we are not giving her enough of a moral foundation.  Her sister was easy.  Hippie Pants was born trying to save the world.  She was bringing home strays by the time she was two.(ANY strays- people, frogs, kittens, anything that stood still long enough.  And she always said the same thing.  "Mommy, he looks hungry. Let's feed him") HP stopped eating meat at age six- the day she found out where it comes from. ("That's just MEAN!!!")  Feisty Pants, however, is well, mostly feisty.  She doesn't like what she thinks is rude.  ("How ROOO") But that's not quite the same as empathy.

                And, it's hard you see.  It's really hard not to applaud  no matter what she does.  She's little. She's adorable.  She's feisty as hell.  And having watched her go through everything she has been through, it's really hard not to do cartwheels for any evidence of self determination or action at all. Or to get angry or stern when she quickly grows snarky and defiant to some adult who is treating her like an imbecile or an infant.  I want to smack them too.  So, this post is in a sense, an apology for whatever type of junior Bond villain she is quickly becoming.  I'll work on her empathy and manners.  You'll work treating her like an equal.  And hopefully, her father will only get her an emergency donut, and not that dynamite she has been asking for.

BDC

                So, New York State wants to close Broome Developmental Center  (and the State Psychiatric Hospital).  They say its for sound reasons.  Most people around here are up in arms about it one way or the other.   I can understand everyone's concerns, BUT here's a parent's take on the idea.

                 IT SUCKS. BIG TIME.  I understand some of New York State's reasons. Not all of them mind you.  I don't believe we need to close services to our most vulnerable residents just so some company or rich a$$hole doesn't have to pay a cent in taxes.  I'm a capitalist. I don't mind people making money as long as I don't have to act as if said money is  sacred.   I especially cannot stand tax evaders.  And just because your pet lobbyist managed to convince lawmakers to make your tax evasion legal does not make it not be tax evasion.  It just makes politicians hookers.

               Now, when you say you want keep people at home and move them out of institutions, great!  I'm all for people being comfortable and safe in their own homes.  Everyone deserves that.  And we should not keep the centers open just to provide jobs.  It is not the job of the disabled to make jobs for others. But here comes the big BUT.  BUT  THEY WILL STILL NEED SERVICES, SPECIALIZED SERVICES THAT YOU HAVE NOT MADE PROVISIONS TO PROVIDE FOR.  And we do not trust you do so.  You have a long history of making promises to the vulnerable that you do not keep.  Everyone remembers the mentally ill being tossed into the streets without their medications or any help.  And now, it looks like you doing the same damn thing all over again. Only this time, you doing it to the disabled.  Including disabled children.  My child is already not receiving specialized care she needs because you have decided to be frankly, a bunch of cheap bastards.  Seriously, she was getting to the see the specialists she needed and getting the services they provide, when you took the option of taking her out of state away.   The specialists here CANNOT proivide the care she needs.  Because by the way, you will not allow it.  You will not let her get botox treatments without anesthesia.  She cannot have anesthesia without certain tests that we have not been able to get done.  And btw, she has reacted badly and gotten gravely ill due to anesthesia before.  So, in effect, you have simply made impossible for her to get the medical care she needs.  All so you can trumpet your cost saving measures.  But how much does it have to cost our children so some rich business does not have to pay a tax.  I pay my taxes. Why are they exempt?  (And don't parrot that "job creator" nonsense.  Businesses only create jobs when they have no choice. They don't want to create costs and employees are a cost for them.  If profit equaled jobs we would be awash in jobs right now.  Profits for companies are a fifty year high.  Jobs are not. Ergo, the equation is not true.)

                  And this doesn't even begin to question the services that can be only found at a BDC in the area at all.  Where are these kids going to get services like aquatherapy??  These therapies aren't games for us, its not an extracurricular activity.  These therapies are the difference between a life of dependence or independence.  How dare you take them away?!?

                    And what of the Forensics Unit at BDC?  Exactly where are they going to go?  People too dangerous and damaged to be let into the community?  Where are you going to put them? 

                   How short do you think our memories are?  I will not forget who you stood for and with when I am standing in the voting booth.  And as long as I have breath to speak for my child, you can be damn sure I not going to let anyone else forget either.

Grateful

                  I have to admit I should be better at gratitude than this especially at this time of year.   I have way too much to be thankful for to be so cranky.   Feisty Pants is not sick.  Everyone seems to be fine.  But I'm a little stressed. Usually we go out for Thanksgiving dinner, but nope not this year.  If you've never done it (and can afford it) you should go out for Thanksgiving.  Blasphemy, I know.  But, you say, what about the wondrous smells, and cheery warm kitchens and setting the table???  Bullocks.  That just tells me you are not the cook at your house.   Thanksgiving is crawling out of bed at crack of dawn to wrestle a giant carcass into a hot oven, cook like an Elizabethan servant, work your tushy off only to be rewarded by your nearest and dearest morphing into locusts like a reenactment of a biblical plague.  Bah Humturkey.  Call me a heretic but I'd rather sleep in, put on clean clothes and go out.  Besides, Thanksgiving is supposed to be about gratitude and it seems to have somehow devolved into how much can I stuff into myself before going on a giant shopping binge like some sort of hunter/gatherer on crack. 

                         Well, nothing for it then but to make it our own.  First, the turkey. OUT.   Hippie Pants is a vegetarian, Feisty Pants is basically one too. I don't like turkey. So we are having ham.  We will do Christmas Dinner twice this year.  Next, no waiting all day while kids lose patience.  We will do it at 2pm.  People seem to think that's odd. Too Bad. Works for us.  There will be a big dinner. We will all be together. It will be in the end, a lovely day.  And that's kinda the point of this post.  You have to learn what is really important and what is not when it comes to your traditions.  If you have a disabled kid you will spend enough time not fitting other's expectations.  If you keep trying to be just like everyone else, you'll just make yourself crazy. Trust me, you have enough on your plate.  Eff em.  If pizza makes you all happier than turkey, than put the cheese on in the shape of a Pilgrim Hat and call it a celebration of the tomato harvest.  We're ALL freaks in some way. Embrace it and move along. You don't have time for worrying about crap.  You will figure out which traditions really matter to you and those ones you should guard with your life.   We could give a rat's fanny about turkey and pilgrims but our Christmas tree is already up.  And Hippie Pants still dresses up on Halloween and takes her little sister trick or treating.  I have a relative who cooks a big Thanksgiving, not for the holiday itself, but the more relaxed "leftover day" (as she calls it) the next day.  She says its her favorite holiday of the year.  That's a tradition I could get into.

                           So, whatever your particular holiday tradition, I hope yours is happy. And virtually stress free.  And for the record, I am grateful.  I am grateful for my girls.  And the snow that is falling as I type.  And the fact that while I bitch about the cooking I will be doing, I have plenty to cook.  I am grateful for the creative outlet this blog gives me. I am really grateful for my new coffee maker.  And I am very grateful for all of you.  Thank you for reading. I wish you peace.

                           

Babytalk

                Okies now, something has been bugging me and I want to get it off my chest.  STOP BABYTALKING AT MY KID.   It's annoying at best and oftentimes, downright infuriating.  I know why everyone does it.  It's because Feisty Pants' speech is garbled and her face does not have a lot of the micro-expressions that animate the human face.  So, people incorrectly assume that she is not intellectually intact.  BUT, while it is human nature, it is also infantilizing and disempowering to her. So stop it already.She is going to have it hard enough finding her power, and getting others to see it by the mere facts of being disabled and a girl.  I will simply not allow the world to teach her that she should respond to it like a helpless child for the rest of her life.  We already do the world's girls a disservice with that power limiting crap already.

               So, to that end, it stops here now.  I've asked nicely a million times.  I've parroted my catchphrase matter of factly a billion times. (She's 10 years not ten months.)  It's not working.  Either you are not hearing me or you don't believe me when I say she is in there. I no longer care which.   She is now ten and should be learning to behave in more grown up ways. (Being polite even if upset.  Using her manners correctly.  Behaving even when she doesn't feel like it.  And working to change what she does not like  instead of accepting it or having a fit.)  And since I expect it of my child, I now expect it of all of you too. I don't care if you believe me.  And I don't feel the need to explain that we have lots of evidence to back up our beliefs either. Why should I have to?   Do I ask you for evidence that you are a real live grown up when we encounter you?  If I babytalked at you the way you all seem to be babytalking at her, you would think I was either rude or crazy.     You will act like a frigging grown up too, world.  You will treat others as you wish to be treated.  You will talk to her as if she were a child not a baby.  Or will have to simply understand that you are obviously not capable of logic and explain in my VERY LOUD IRRITATED MOMMY voice that you are acting like a judgemental teenager and perhaps you, world, need to stop and think about your rudeness.  Because, obviously, if we are children for the rest of lives, that is what we should expect from grown ups right???

              Sorry, I don't actually mean to seem so bitchy, but it is enraging.  How dare any of us  assume any human being is incapable of anything, until you have evidence to the contrary?  It's just one more way we try limit another's power and that is simply immoral.  And when the Universe has already limited her power in enough ways, it is simply reprehensible that we would add to those limitations.  So, enough already. Stop it.  (Oh and btw, I hate to admit it, but sometimes when she doesn't answer you, she is ignoring you. I'll work on that if you work on your rudeness.)

Holidays are here!

         It's official.  The holiday season has begun.  I know this because we spent the afternoon in an ER.  Mother always said it just wasn't Christmas until someone threw up.   (Seriously, she did. I had a sister who would get soooo excited every Christmas, she would end up sick.  Some people eat too many cookies.  My sister would OD on happiness.)  Not a big deal actually.  Feisty Pants pulled her g-tube (a tube that goes directly into her stomach through which we feed her) one too many times probably, and the balloon that keeps it in place broke.  And that usually means an automatic ER visit.  Believe it or not, she does this a lot.  Gets mad or bored and simply yanks it out and hands it to us.  Also, I think sometimes it becomes itchy and that must drive her crazy.

         So, not much else to do then, but drag Goo out of bed  (he does the night shift with FP and therefore sleeps days) at the crack of noon and schlep her and her entourage (Zippy, suction machine, various equipment, a ginormous purse and two crabby parents) to get it replaced.  The procedure itself takes less than two minutes.  The trip took four hours.  I shouldn't bitch.  Scary visits to an ER have NO wait time.  The fact that it took so long is because it was not all that urgent.  She was breathing fine, not bleeding, and wasn't trying to perform her own rendition of the Exorcist pea soup scene.   I am counting my blessings,  really.

           It's just that I hate wasting time.  I'd rather be working and getting something done.  Even if it's a tedious task. Instead, I am sitting around watching other people work and that's even more tedious.  Worse still, I am sitting around an ER waiting room that is full of sick people.  And I just KNOW at least one of them has that new form of bubonic ebola zombie virus that's about to start the apocalypse.  And I even more sure they will cough/spew/sneeze/bite on us somehow and I will have to attend the end of the world with a fever and chills.  And two whiny cranky daughters who have it too.  My only consolation is that I am merely agitated and bored.(Well, that and the gift shop at this hospital has Starbucks.) I met another parent of a feisty one.  Parents of disabled kids end up running into each other over and over again.  She's in for an abscessed tooth that has become very nasty.   She looks as good as she feels.  I am now a big whiny putz for being bored.

          Update: it's now tomorrow. Sort of.  I started writing this post last night.  And lo and behold, Feisty Pants has a tummy bug.  Don't even tell me that there is a virus running rampant through her school.  Or that if her tummy was agitated and extra acidic, it might have been what popped the balloon on her g-tube.  It's the Holiday Zombie Virus that she got from an ER, I just know it.  Some zombie sneezed on her I am sure.  Happy Holidays!

What they don't tell you...

             I was looking at Feisty Pants' wheelchair today.   Zippy's  (that's its name) one wheel is getting wonky and throwing off the alignment.  I don't steer well to begin with and that is not helping.  So now, I need to call the medical supply company and have it looked at.  We go through this a lot. We use our equipment.  You know,  like nascar drivers use cars, and so tend to be hard on all our equipment.   I don't believe in wrapping children in cotton wool and hiding them away from the universe.  Not even disabled kids, ESPECIALLY not disabled kids.   FP is, before she is anything else, a KID. She likes mud and bugs and roughhousing and loud music and (shudder) fart jokes. (I blame her father for that one.)  So, obviously we are hard on equipment.  And it's hard to roll down hills and ramps at any fun speed while yelling "No brakes. AHHHH" when the alignment is off and you have to slow down to steer.  Faking a crash is a hoot. Real ones suck. Almost as much as having to go slow. (Slow is the worst of all.  Just ask Feisty.)

              But, anywhoo, the point is that I'd like to give a few pointers on equipment.  There is something that bugs the living hell out of me concerning both medical equipment and medical advice.  You never really get any.  At least, not with any USEFUL details.  My daughter has had a wheelchair since she was three.   She spent five years scraping her ankles against the footpedals (cutting the hell out of them in the process) while we went to doctors, specialists, hospitals, three or four different medical supply companies that we deal with on a weekly basis.   And it wasn't until a teacher pointed this out- THEY HAVE FRIGGING PADDED FOOTRESTS AVAILABLE. Which her insurance happily paid for with a simple note from her doctor. What the hell?????  FIVE YEARS and not one person told us this was available.  Same thing with her now specialized head rest that does NOT bruise the hell out her shoulders everytime she tries to adjust her position in her seat.  This happens all the time and just pisses me off to no end.  I won't be upset if some rep from a company wants to upsell me.  I am very good at saying no when I need to.  But I cannot get my child something she needs if I don't know it exists.  So why don't you people tell us???  It's often the same case with medical treatments.  I went to doctor after doctor and hospital after hospital until I found one that offered me anything other than a tracheostomy for FP.  A simple tonsillectomy and adenoidectomy was all she really needed and her health improved on an exponential level without having to cut a hole in her throat and get rid of her pets.  And I would NOT even known about it had not a respiratory tech not approached me off duty to whisper in my ear.   Same thing when she was six weeks old and a doctor dismissed her as a vegetable (again a therapist approached and literally whispered in my ear "My ass, she's not in there. Go find a way to let her out")

               So, if you are new to the jungle ride of rising a kid like FP, some advice. Don't take the first answer without asking a million questions.  What alternatives are available?  What can the alternative offer?  What if I don't like the results?  What's the next step if this doesn't work?  What options can make this more comfortable? (That's a good question for both treatments and equipment.)  Who else can I talk to about this?  What is the exact name of this (treatment,procedure,medication,therapy,equipment) so I can go home and google it?  ALWAYS go home and google it.   Once you get the hang of being an informed medical consumer (or as we proudly call it, a giant pain the ass) you'll quickly learn which details to sweat and which ones to slide on.  And any doctor or equipment provider along the way who cannot appreciate that is frankly, not worth the title.

Links for toy ideas for your feisty ones.

       Well I 've decided to put in some of my favorite links to gift and toys for disabled kids.  Please note, most of these are pricey. The problem with the companies that make the specialized products is that they are used to selling to schools and hospitals.  Or, the case of some lucky kids, they are purchased through insurance programs or resource networks for the disabled.  Which means, unfortunately, that they are waaayyy overpriced.   I like to troll these sites for ideas.  Then I gleefully steal said ideas and go bargain hunting on sites like Amazon, Walmart, or Toys R Us.   Heck, I even found a few gems in dollar stores. Once you get the idea of what you are looking for, it becomes easy enough to spot the equivalent (or even the original) in discount stores.

 

Toys R Us- they have a list of recommendations for differently abled kids.

Toys R Us differently abled kids

 

Fat Brain Toys- I would go broke here.  Toys guaranteed to bring out your inner geek.  (Like we need help with this around here.)

Fat Brain Toys

 

ThinkGeek-  another geek Nirvana.   Known for their geek tee shirts but they have toys too.  Feisty Pants' very favorite sonic screwdriver penlight came from here I think. 

ThinkGeek Toys

 

Ableplay- not too pricey, but still I recommend doubling checking on prices.

Ableplay

Enabling Devices- a definite go-to site for ideas and hard to find items that will adapt other toys You can, for example, get products here that make any battery operated toy into a switch toy. ( A switch toy is one turned on by hitting a large button) You can even get devices that make anything with a plug become a switch enabled device, so you can make your lamp or radio turn on with a simple large button.  Can be pricey though.

Enabling Devices

 

Snoezelen-  This is a type of therapy using lights and textures for sensory input and brain stimulation.  The objects here are VERY pricey but is great site to make you think differently about how you approach the idea of play and toys. I like to troll here and then hit what my hubby calls the "the stoner section" of places like Spencer's Gifts or Walmart.

Snoezelen Therapy

 

           I hope this helps.  Its a very short list, but I think it can help get the idea across of what to look for gift ideas.  If you know a great store/site, put it in the comments. I'm always looking to pick the brains of others especailly when bargain hunting.   Happy hunting.

 

So what do you want for Christmas?

           So what do you want for Christmas,  little girl?   I don't know what it's like when some Santa wannabe (Santabe?) asks your kid this question, but at our house that can be a loaded question.   Feisty Pants is whip crack smart and very quirky,  so you can expect all sorts of answers to this one.  She has been known to say things like "to walk"and "a motor for Zippy."  One year she asked for dynamite.   Mostly I suspect she says things like that when she feels adults aren't taking her seriously and she knows that will shut them the heck up.  How do you respond to that??  ( Zippy, btw, is the name of her wheelchair. When she was little, new equipment made her nervous.  Naming things made them seem  like pets instead of death contraptions we were about to strap her into.)  We saw a commercial for a Furby the other day, I mentioned to Hippie Pants, that I always thought hers was creepy.  Feisty Pants has now asked her father for two furbies for Christmas.

          So, what do you get a disabled kid for Christmas or birthday, Hannukah, Easter, whatever? Other than the obvious answer of "Good God, not another teddy bear".    Often the disability partly defines the gift.  You don't get a visually impaired kid a magic eye book.  But it is hard to shop for someone like FP.   She has CP, so her body does not cooperate. If you don't spend a lot of time with her, you simply don't understand her speech.  Many people, not all of them strangers either,  think she is crying or whining, when in fact she is simply carrying on a conversation.  (I spend a lot of time telling people, "She is ten years, not ten months.)   But it's human nature to expect people to be as smart as their faces are expressive.  She does not have a lot of the  subtle expressions that animate the human face so people think she is less intellectually intact than she is.  And toy manufacturers tend to match intellectual challenge to physical development.  As a result, the toys she can physically manipulate and interact with bore her to tears.  She LOVES video games but if it takes you 30 seconds to make your thumb respond correctly to push the button, it's a little hard to play.  That leaves her simulation and strategy games.   Which makes me a little worried. She has gotten wayyyy too into Battle Realms.  I  worry I'm raising the next Bond villain. Or, perhaps on the brighter side, the next Alexander the Great. But, anywhoo...

            So, where does this leave us gift wise?  Clothes are great, but what kid lights up at fun socks from Santa?  That's more of a gift for tired parents so they don't have to schlep to the store.  We tend to cheat and go all nerd toy.  Arts and crafts, science experiments, nature stuff. FP is cortically visually impaired, so all those cool stoner "trip toys"  college kids like (you know -basically anything from the back of a Spencer's) is good. (Seriously - look up the term "Snoezelen" It's a type of sensory therapy.)  I'll try post links for Monday's post.  But what do you like to get your kid whether he is typical or special needs that is your secret go to?

Who put their lights up NOW?!?

            So, we put up our Christmas tree yesterday.   I'll take that moment of stunned silence as you comprehending the awesomeness of early Christmas cheer and NOT that you are thinking we're nuts.  I like to think of us as harbingers of yuletide joy, y'know, like a crocus in early spring. You're welcome.   Besides, the universe must have approved. We put it up last night and woke to  GLORIOUS snow on the ground.  Not enough, but just enough to frost the landscape like icing on my cake.  I willingly and gleefully with all malice aforethought, admit to being one of those freaks who LOVE winter.  I would put Jack Frost and Baba Yaga on my Christmas card list if I could.

             But seriously though, this post is actually about explaining a little of why a lot of families with disabled members seem a little wacky.  For us, the Christmas tree saga goes like this, Feisty Pants spent every Halloween and most of November in the hospital every year until she was six.  Several years she was in and out in December too.   And the last half of January.  And my birthday in February.  And usually Easter too.  (She has been discharged on Eater Sunday so many times she should get a Jesus discount on the bill.)But I digress.   Kids need and thrive on some form of routine. It gives them a sense of faith about life and the universe.  Sunday will follow Saturday, the sun will rise in the morning, Wednesday is meatloaf night, Mom will shout every time you shave the dog.  That sort of thing.  But if you never know when you will be calling the paramedics and rushing off to some ER, your routines get blown all to hell.   You learn if you need to count on getting anything from dishes to holidays done, you'd better get them done and no procrastinating.  So you learn to redefine flexibility and you adapt.   Dinner together is important, so we have to be open about the definition of dinner. To fit in around appointments and jobs, we eat one meal a day together no matter what time it is.  If that means it's brunch at 10 am or a late supper at 10 pm, so be it.  And with Christmas, well, we have had Thanksgiving dinners in hospital rooms and Ronald Mcdonald Houses, Easter in many Chinese restaurants and no batted an eye.  But no Christmas tree breaks my daughters' hearts.  And after a near miss of not having one, they called a family meeting.  So now we put our tree up the first day in November that we can all get together and do it.  Usually that means Veteran's Day- no school, no therapy appointments that day, you see. 

               And I have to admit, in my heart of hearts, while we do not do it to bug anyone, there is a tiny thrill about the defiance of being obnoxiously cheerful.  When things seem really dark and awful, and you don't have much to make you get up and put one foot in front the other, defiance will keep you moving.   When you are told that your child is "neurologically devastated" and not likely to "ever do much" , there is a part of you that has hard time not applauding when she willingly misbehaves.   When you are warned when she is six weeks old that you "need to know that you are probably taking her home to die", putting that damn tree up early anyway, while she giggles at Goo swearing at lights is an awfully fun way to give a giant christmas tree light encrusted finger to the killjoys of the universe.   You gotta learn to take your victories and joys where you find them.  Happy Holidays!  Every last darn one of them.

            Well, now, I had an interesting experience yesterday.  Hippie Pants' boyfriend comes in the house yesterday and asks who lives next door.   A lovely woman named Jan, btw.   Definitely NOT the man he saw peering into her windows.  A man wearing a shirt, sweater, socks , hiking boots, and tighty whiteys.  Notice the lack of pants?  We sure did.  He then wandered up onto my porch, I opened the door and asked him if his mom needed anything.  He waved and went back home.  (We discreetly made sure of this.  I would have simply taken him home but he is a like a deer -fast and easily spooked.) In case you, dear reader, do not live in the Southern Tier of New York, it was in the mid thirties  with snow flurries.

             See, here's the thing.  He is the son of a neighbor. And, I believe, autistic.  He exhibits the behavior I associate with an autism spectrum disorder- mostly nonverbal, no eye contact, is a bit of wanderer.  I suspect his brother has similar issues.  The wanderer in question is the more outgoing one of the two.  The mother, an older woman, is living with her sons and no help that we can see. But his not wearing pants is worrisome.   It has never happened before that I am aware of. If it's a one time aberration, hell we all have had that crazy day.  Any day that does not reduce me to wandering the neighborhood in my undies counts as a win as far I'm concerned.  I've read that mothers of autistic children have PTSD rates similar to combat veterans. I do not want to be the one who adds to her stress level if he just wandered while she  was occupied elsewhere for a minute. Or worse, embarasses her over something she cannot really help.  What's she gonna do, tie them to their seats??  Never go to the bathroom?  But maybe she needs help.   But who do you call?  They are grown men so what is the equivalent of Child Protective Services for adults?  At what point am I meddling into someone else's business? At what point am I neglecting my duty as a human being by turning a blind eye?

             So here I sit, second guessing myself from here to next Tuesday....   We did make sure he went home. (I am not a complete a-hole thankyouverymuch.)  But did I do enough?   What if next time he wanders across the street and gets hurt? (He never actually leaves our block.) Or gets lost?  Or gets picked by a cop who doesn't recognize that the guy has autism and is vulnerable? Exactly how do we help without crossing the line into judgmental meddler?  I'm a complete nerd ( honestly, a complete Poindexter with all the social skills of a nerd) so what if I am judging this all wrong?  What would you do when confronted by an otherwise harmless soul in his undies?

           Well, since I was thinking about my last post, I decided to elaborate on that theme of recommendations we don't normally think about but might come in handy if your kids is sick or disabled.  So here are a few of mine in no particular order.

          1)  Make a list of all meds, allergies, doctors, therapies etc. Also add anything you want the ER to know but may not think of at the time.  (Feisty Pants' list includes instructions about certain hospitals and which emergency procedures we will or will not consent to.) Make copies of this list. Stash them everywhere.   I put this in my last post but it bears repeating.  It is nigh on impossible to remember your last name when the paramedics are standing in your living room at 3 am.  Harder still to remember again 4 hours later when you are vainly trying to mumble it at the five hundredth medical personnel member once the adrenaline wears off. I got this idea from my friend Celtic Pants.  She once had a severe asthma attack and when the paramedic started asking questions and she couldn't get the breath to answer, she just whipped her driver's license with half of the info they wanted all neatly written down.  (Pretty ingenious for someone who couldn't even stand up straight at the moment.) 

          2) Ask all the therapists where they get their equipment, toys and games etc.  You'll end up with a good list of special needs  toy and therapy equipment specialists.    They are great sources for ideas (not the items, mind you)    THEN-search regular stores and amazon for a better price.  Toys R Us even keeps a list of recommendations for special needs kids based on age and particular special need (fine motor, cause and effect, etc) which they will send you if you request it.  Search their website to ask.  You can even find good ideas to adapt everyday things for a disabled kid at the hardware store.

           3) Can't figure out how to adapt something for your tyke?  Ask an OT (occupational therapist).  ALWAYS.  They are incredible at that sort of thing. I swear they could cobble together a space shuttle out of a rubbermaid tote and three rolls of duct tape.

           4) Lay off the stuffed animals.  Really. If you have a disabled kid, everybody on the planet will give them a cute little teddy bear at some point. Especially, if like Feisty Pants, your tyke is a girl.   It's sweet, it really is.  They see a cute vulnerable child and they have soft fuzzy feelings for them.  So they get them soft fuzzy toys.  Except, soft fuzzy toys harbor dust and dust mites and allergens. Not good for kids with asthma or imunnocompromised kids or kids with trachs or breathing issues of any kind. So they have to be washed and dried regularly.   I have literally given away hefty bags full of stuffed animals.  And we still have a bazillion floating around here.

            5) I mentioned an emergency bag in the last post, but Hippie Pants says that isn't always helpful.  ("What if you cannot grab it for some reason?")  Her tip is keep a sample of shampoo, deoodorant, tylenol and an instant coffee stick (like Via) or a teabag in your purse at all times.  She says that kept her looking like an actual human being on many an occasion.

             I am sure there are many more.  But this is what pops into my mind first. Anyone else have a great tip they'd like to share? I'd love to hear it.

Surviving Limbo

           Hospitals are psychologically strange places.  You're there because something bad, at least in a minor way if nothing else, has happened.  But you're there because it's a sanctuary for healing. One half scary and stressful for a parent, one half serene place of healing.  An odd combo of purgatory and limbo.  The hallways are like mazes (especially at night).  People tend to behave like they are churches.  We wear good clothes and try to use our grown up inside voices.

        So, how do you survive if you are in one these strange places for a while?  I thought perhaps I could pass along a few tips.  First, wear comfortable shoes.  Really.  Our instinct is dress at least business casual.  After all we want them to take us seriously.  But you're gonna be stuck wearing that outfit and those shoes allllll day. If it's your kid in the hospital, you are probably going to be sleeping in that outfit. They had better be comfortable or your day is gonna suck that much more.

            Next, make friends with the nurses.  Nurses are awesome. Seriously.  They have the most hands on time with the patients, so they always know more about your (or your kid's) case than the doctors.  And they are usually the ones who translate any jargon you don't get.  If you have any questions, ask them first.  If they don't have the answer, they usually at least know who will have the answer for you.

           Also, if you have any questions about hospital life, ask.  And know that you can always ask for a social worker. They can explain your rights and responsibilities vis-a-vis medical decisions or the bill.  They are great for things like help with accommodations or transportation if you are from out of town.  Please, note they can't score you a free place to stay. But they can tell you how to get a discount on a hotel or how to contact a Ronald McDonald House.  Or get you a discount in the hospital cafeteria.  Or where to find things like shampoo or soap or if you're really lucky where to do a load of laundry on the cheap.

            And while we are at it.  A tip I learned the hard way.  If you have a kid (or any loved one you accompany on hospital stays)  who is often hospitalized or transferred out of town, make yourself a small emergency kit. In this kit put:  a list of medications routinely taken, a list of doctors seen and their phone numbers, any therapies/ treatments used regularly, toothbrush, comb/brush, pair of socks, spare cell phone charger, one spare outfit, a small bar of soap or small bottle of shampoo, if you can a ten dollar bill or roll of quarters.  I am sure you will think of other things you want or need as you do this.  Believe me, a couple of three am ER trips and you will know all exactly what you want in that thing.  And it will make a huge difference when it's the middle of the night and/or the middle of a crisis and you cannot think straight let alone remember every specialist/medication dosage/med allergies while some one is firing questions at you.  A tiny bit of readiness makes the whole process a little less harried and makes you, the caregiver more relaxed.  Which makes the patient more relaxed.  Which makes them heal faster.  And that's better for everybody. 

Guilt

               So this one is a little hard to write.  Nonetheless, I definitely feel the need for it to be written.  I want to spend a little time talking about something that parents of disabled kids really don't talk about a lot. Guilt. Terrible, awful, nerve wracking, exhausting guilt.  I carry quite a bit.  My daughter's disability was caused by a birth injury.  What if I had gone to the hospital earlier instead of taking a shower when I was in labor?  Should I have sued when every lawyer on the planet approached me?  How much did I neglect my then teenage daughter when her sister was little and oh so fragile?  How much was I  not there for Hippie Pants when her sister was in the hospital?  How many things do I get wrong with Feisty Pants on a daily basis?  How the hell do I know when I've gotten it right?   You do the best you can and muddle along, I know.  But these thoughts creep out and bite you hard when no one is watching.

                I am writing this post for two reasons.   One, I am in a unique position.  I grew up with disabled siblings, so I have seen this festering guilt we all carry from both sides.  And for literally, all my life. It can make anyone crazy if you let it fester.  At the very least, sit with it and then move on.  Guilt is a terrible beast.  Give it the respect it deserves. And then slay it and move along.  I want to let other parents  just starting this journey know that its not only them.  We all feel it.  And it will get much, much better.  You will find a thousand ways to cope.  You will celebrate a million miracles.  One day you will start to be able to look back and think, "Damn, I lived through that?  We must be ok, then."

                 The other reason, is much more personal.  Hippie Pants is now going through her third jolting, heart stopping major life change since January.  Two of them have been awful.  In fact, this last jolt can only be called horrific.  (An awful crime has happened to close friends of hers.)  I worry that my beautiful sensitive artsy hippie daughter has just handed too much death and destruction for any 23 year old to go through intact.  And all my fears of did I throw her to the wolves emotionally, when she was a teen and I was practically living in a hospital  come flooding back hard. Have I been mother enough to prepare her for what is often a frightening and confusing world?  Damn, but guilt has sharp teeth.  I worry more she will let anger harden her gorgeous heart and make her cynical and bitter.  And so, I write this even though I am actually not all that comfortable with letting all of you peek so far into my own dark corners.  If I want her to let her beautiful dazzling heart shine like it should, maybe I have to agree to be a little vulnerable too.  And then, hope like hell she finds a thousand ways to cope without shutting herself down.  And, maybe just maybe,  I can do a little good and let other parents know they can face their own guilt too.

              I wish you all peace.

In between places

            So another Halloween has come and gone.  It was awesome. No one was sick. The kids' costumes were just the right amount of "pooky".  Feisty Pants was the cutest werewolf ever. (Don't tell her.  It will break her heart.  She knows she was absolutely terrifying.)  Hippie Pants was the correct combination of cute Little Dead Riding Hood and cartoony gross out.  (Her hanging eyeball was a huge hit with Feisty Pants)  I would love it if we were those awesome kind of parents who turn their kid's wheelchair into construction equipment or movie house props.  But, alas, we are completely happy if no one throws up in their own candy bag. The girls once went trick or treating just as they were coming down with Swine Flu.  We realized something was wrong,  when they both came home, took off their costumes, and cried from exhaustion.  (The oldest was in college at the time.)   All in all, this one was a blissful breeze.  (Only one crying jag- because Hippie Pants didn't get her make up on fast enough for her sister.)

              And so now, we are in one those in between times.  One step away from back to school and Halloween, one step before Thanksgiving and Christmas.  It's weird, being the parent of a disabled or sick child.  You find yourself finding comfort in the strangest places.  The quiet hum of a NICU where everything is hushed, including the lights.  An ER at three am, when your family is one of only a few there.  Waiting rooms of doctors and therapists first thing or last moment of their day.  Hospitals at midnight, when its just you, a few nurses, and a security guard looking for the best vending machine.  You find comfort there, because there is not much else you can do except, slow down, hold your child to try reassure yourself and them, and wait for the crisis to pass.

               Old folk tales say magic exists in the in between places.  I think there something to that idea.  And this time of year, between the back to school pumpkin spice fueled  fall and the rush to cookies and Santa, is definitely an in between place.  Its getting dark earlier.   It's cooler and quieter.   The world seems to be slowing down just a bit.   Not a ton of stuff to do this time of year, except rake up the leaves and wait for the next round of activity.   So, for all those out there in a hurry and stressed out for whatever reason, especially, for anyone with a sick or disabled kid, I wish you an in-between time.  Do what you can when you need to, and then rock them to sleep.  And simply listen to world grind along without you for a few minutes.  Even in the midst of chaos, those in between moments will sustain you.

            So, I have been reading more and more about what we should be doing as Americans to improve our educational system.  Over and over I hear people mention the idea of longer school days and longer school years.  I get why people want to talk about these ideas but I would like to point out a few things.         

             First full disclosure, my daughter is  (as anyone reading must know by now) disabled and therefore gets the majority of her therapy in school.  The upshot of this is that she already basically goes to school year round.  She gets a few weeks at the end of the normal school year and then a few weeks at the end of summer off. Other than that she goes all year.  I DEFINITELY think this is genius. Feisty Pants gets this wonderful opportunity because they don't want her to start sliding backwards so to speak, physically due to missing therapy.  As a natural result, she also does not backslide intellectually.  All kids should have this advantage.  It also would be easier on parents who work outside the home. Good daycare is often hard to find and even harder to afford.  Add to that, all the kids who need that school lunch and breakfast to make up for a lack of resources at home. (1 in 6 kids in the US live in poverty, I believe) and a year round school seems like a win/win for everybody.

         Having said that, a longer school year is not the same thing as a longer school day.  Our kids are already over scheduled in general.  And we are all underslept as a society, imho.  Maybe I'm old and crotchedy but I think we put too much pressure on kids anyway. Dance, athletics, clubs, music lessons, etc etc etc.  When do they get time to just be kids?  C'mon people, we have all seen (or should have seen) the research saying that kids need time to get bored and to have to entertain themselves, it's how they learn to be creative.  God knows we need them to be creative.  They are gonna have a big job running/ fixing things when we hand the world over to them.

         And speaking as a mom who has raised one kid who never fits the mold (too smart,too artsy, too flighty) and is raising one with no mold to fit (too feisty and different doesn't even begin to cover her), we need something that works for ALL kids from Hippie Pants to Feisty Pants to the straight A Ken and Barbie down the street.  We need to find a way for our schools and our teachers to be allowed to be creative.  Standardized testing is not working.  All we are doing is teaching kids how to take tests.  We need to go back to teaching them how to think not what to think.  And that means unchaining the hands and minds of our teachers.The best teachers I have ever seen all shared one thing in common. They were creative.  They found ways to incorporate the lessons in ways the kids thought of as fun projects instead of boring classes.  It is amazing to watch children blossom and work their cute little tushies off without even realizing how much work they are doing.  Why on earth are we not letting our teachers do this ALL THE TIME??  And while we are at it, why don't we pay them what they are worth?  Think about it, who is we all quote when we want to seem smart? Plato, Aristotle, Socrates.  Teachers- thousands of years later.  The people we want others to know we know, so we look smart, are teachers.

Some links for all the feisty ones out there.

  While I am still feeling smug for doing something five year olds do with ease (links are hard whinewhinewhine)  I decided to do another post I have been thinking about for a while.  The following are some links to great sites for parents of disabled kids.  This definitely only a beginning, but here a few that leap out at me immediately.

 

Wrightslaw-  a site run by a legal firm that specializes in educational advocacy for special needs kids.  Lots of links to articles and tips for becoming a better advocate for your child especially in the IEP process.  They also offer books and seminars if you are interested.

click here- Wrightslaw

 

SenSwitcher- a fun program for small children or kids with visual impairments. Provides great visual stimulation for kids.  (Older kids with normal vision may be bored but not always.  I have seen adults play with it.)

click here- SenSwitcher

 

Explore.org- not just for kids.  Has a section of live webcams for all sorts of things.  Jellyfish, Coral reefs, Beluga whales, puppies, bears, etc.  The jellyfish cam keep Feisty Pants entertained (and provides the exact right kind of visual stim for her)  for like, forever.  I defy you to try one of the live cams and not become completely entranced.- note this link I think takes you directly to the brown bear cam (the last one we were watching) but if you scroll down the page you can easily see the links to all the other live cams.

click here- Explore.org live cams

 

Clinicaltrials.gov- just what it says.  A site to search for clinical trials and recruiting studies.

click here- ClinicalTrials.gov

 

Feeding Tube Awareness Foundation-  a great site when starting down that g-tube journey or to network with other parents.

click here -Feeding Tube Awareness

 

My Child Without Limits.org- a site for kids 0-5 years with developmental impairments or disabilities.  Great for the preschoolers, but a good starting point to jump off to other sites. too.

click here- My Child Without Limits

 

United Cerebral Palsy-  Feisty Pants has CP but usually there is a site for every particular  condition.  (Just google the "name of condition" +advocacy)

 click here- UCP

Self Advocacy Association of New York State-  because nothing is so empowering as finding out how to use your voice or helping someone else find theirs.  If you don't live in NY, just google self advocacy + name of your state.

click here-SANYS

So, I figure this is a good start.Woefully incomplete but a good place for beginnings.  Feel free add your own faves in the comments.  I'd love to see what jumps into your mind first.

         Ok, I guess I seem  kinda bitchy from my last two posts.  I know, you're thinking "No way!  You're just a ball of sunshine, you are".  But, alas, if you look carefully, it's there.  I just hide it well.  So, perhaps, to alleviate what negativity I seem to be accumulating, this one will be about things we can do to spread a little change for good.

          To that end,  I am going to try to post links where you can go and spread a little good or at least fight a little evil.   We all feel better when we work to make the world a better place.

 

Care2.com- LOVE this site. Links to free donations,lots of articles on healthy living, lots of petitions.  And every little thing you do earns butterfly points which you can then spend to make even more free donations.  You'll make the world a better place. You'll feel great.  And it's all free.

click here- Care2.com

The Great Good Site- lots of links to free donations (just follow the tabs at the top) and if you want to shop, a store whose proceeds go to some great charities.  I've spent many a Christmas budget here- and never regretted it once.

click here- The Greater Good Site

Freerice- For those of you who don't already know this site, it is awesome. You answer questions about vocabulary, geography, math, science, languages, etc.  For every right answer, you get a little smarter and the World Food Programme gets ten grains of rice. A great site for kids.

click here- FreeRice

FreeKibble-  Feisty Pants picked this one as her favorite.(You can make the dog bark and kitty meow. Also It was started by a schoolgirl, so GIRLPOWER.) You answer a trivia question and right or wrong you give a donation of pet food to a shelter.

click here- Freekibble

RedJellyFish- Hippie Pants likes this one.  (Her quote "FEED ALL THE MONKEYS!!")  You can click to donate to feed a chimp and to save rainforest.

click here -Red Jelly Fish

         So there you go.  A few clicks of your mouse, a few minutes of your time and you have done your bit to make the world better. And in case you wonder why I do seem to harp on making a difference or beating back the darkness or making the world a better place. It is because of this.  Because every single day, I get up and watch my youngest child struggle to move and work  to get her point across when she is hard to understand.  Some days I watch her struggle to find a comfortable place to sit. Some days I watch her struggle to simply take her next breath.  I wonder why there is suffering in this world. I have come to this conclusion.  The reason there is suffering in the world is so that you and I will see it, roll up our sleeves, and FIX IT.   Now, let's all roll up our sleeves and get to work.