Friday, January 31, 2014

Sacred things...


        You know today, I would like discuss some unconscious prejudices towards the disabled.  I don't mean the obnoxious overt ones either.  Those are just ignorant bullies who need to be smacked a time or three.  I mean the quiet insidious ones we aren't even aware of.   We all have them.  We just don't often think about them. We see a disabled person and immediately think, "poor thing."  Why?  Maybe their life is awesome.  They could've just won a medal or the lottery or just fell in love.  We don't know. We just assume that their life is somehow small and limited.  We automatically think of the disabled as victims or innocents- they could be cunning bank robbers or the most vile small minded haters who ever graced this planet.  We are just assuming they're powerless or timid.  Oh, and here's my favorite pet peeve today we assume if someone does not speak quickly or clearly that they are not intelligent.  And yet one of our most brilliant minds of science uses an augmentative communications device. 
          I get why we do this.  Two hundred million or so years of evolution states that getting information quickly about our surroundings is better for our survival.  That's why we like to label people.  That's why we don't trust people who don't look or sound like us. That's why we love gossip.  We like to think of ourselves as quick-witted not prejudicial, as if that quick dismissal of others was somehow a smart or sacred thing.   But if we do not acknowledge these unthinking reactions, we cannot move beyond them and become complete, whole, decent people.   We spend our lives being jerkwads who limit others instead who and what we are really capable of being.  By limiting others, we limit ourselves.
         And, so to that end dear human race.  Do me a favor?  For the love of all that is good and your own human experience, please stop assuming that disabled are not intelligent.    Normally,with Feisty Pants we don't care.  It's almost fun to completely blow your mind when you find out she's clever and mischievous.   But right now, it's a pain my ass.  Why do the services for the disabled get cut first  when schools and states need to cut spending?  It's because they believe it's ONLY an expense not an investment as if the disabled offer nothing to society. Forget that is clearly not true in a thousand different ways it's also more expensive in the long run.   Why oh why does her bus keep picking her up BEFORE her school day is over?!?  It's her education NOT daycare.  And frankly, a violation of her civil rights.  No one is doing that to be awful.  They just want to be efficient and get their work done. This is a problem with any institution, eventually it becomes run for the convenience of the management not the clients.   So how about we make a deal?  You all stop acting like Feisty Pants is just a "poor thing" who will not be able to go out and conquer the whole world.  And I will stop screaming the "L" word (lawyer) every time you treat  her education as something less than sacred.  And believe me, to me and Feisty Pants, it is a sacred matter.

Thursday, January 30, 2014

Time Turner wanted


So another parent of a feisty kid and I were talking today.   She mentioned yet another set of parents who were having problems getting some funding due to not being fast enough with paperwork to suit the funding source.   A common problem. Sigh.  By the way, this is not unusual to talk about these things. Parents of disabled kids run into each other  ALL the time.  Doctor's offices, therapy appointments,  grocery stores, endless school meetings of one sort or another.  It's a small world even in the biggest of cities. After Feisty Pants was once helicoptered down to Children's Hospital of Philadelphia, I rode up in the elevator to the PICU with the mother of a kid from Binghamton who had been in the room next to ours in the ER.  Her kid had been helicoptered three hours before mine.  And so, we talk. A lot.  It's like being a war zone. You are instant allies in the fight to get our kids what they need.  We discuss bureaucrats, social workers, doctors, therapists and modalities, equipment  and vendors, funding streams and insurance companies, and tips and tricks.  And I doubt any of us would win prizes for political correctness or ever be unwilling to dish about what we love or who we hate. (Take note, people who deal with us on a professional level, we are taking about you a LOT.)
            So, people who deal with families like mine, here is something I'd like to tell you. We are frigging BUSY.  Seriously.  Most parents are. But,  much like how no one who isn't poor ever gets how expensive it is to be poor, people do not seem to understand what it's like to be constantly pressed for time.   FP needs someone to be awake and alert all the time.  My husband and I sleep in shifts.  We routinely work 16-18 hour days.  24 hour stretches are not unheard of.   And we are lucky. We have each other.  Divorce rates are higher for the parents of disabled children. FP gets physical therapy, occupational therapy, speech therapy, aquatherapy, visual therapy, massage therapy.   Multiple times every week.  Not all of it in school either. And she only gets those because we have not figured out yet how to work in hippotherapy and a chiropractor. Add doctor appointments, sick visits, hospital stays.  Drug stores.  Deliveries from medical supply vendors.  And I am constantly juggling all these appointments with all of the providers shifting schedules.  And usually fighting with somebody over getting something arranged promptly or getting it paid for.  And that's just one kid.  I also have a house to run and pesky people who think they need attention too just because they're family. And paperwork. You NEVER run out of paperwork when dealing with a disability.  And I see LOTS of families where more than one kid is disabled.  So the workload is doubled or tripled.
              So, please understand.  We do seem overwhelmed and disorganized.  We are. But almost never because we don't care. Almost never because we cannot be bothered. Try to imagine your craziest busiest day. The one where the kids are sick and whined all the way through the doctor's appointment.  And the dog ate something it shouldn't have and left you the residue.  And everyone whined about dinner.  And the phone would not stop ringing. ("oh good, you're home. I'm glad you're not busy.") And at the last second, you found six pages of forms that needed to be mailed out that day. The one where all you wanted to do was find five minutes to wash some biological substance (from some other human being. ewwww.)out of your hair and find your bed under all the laundry you haven't folded yet and let sweet oblivion overtake you.  That's our normal day.  Please, cut us some slack.

Tuesday, January 28, 2014

For Hippie Pants


           I started this blog by mentioning that I died in childbirth.  I think I want to make today's post about that.  Not because that's somehow special or awesome or even all that uncommon.  Childbirth is still  one of the most dangerous times in a woman's life.  Even in the best of circumstances.   I am not even vaguely exceptional or interesting in that.  Nope, I think I just figured out what I could learn from that and that's what I want to discuss.  (I pretend you are all listening. Shut up it's my blog .)
           It all seemed so boringly normal at the time.  I was merely a little overdue.  I wasn't finding labor all that horrific. There I was, all big and bad-ass, an experienced mom. I was gonna sail right through this.  When Fisty Pants' heart slowed on the monitors.  And then did it again with the next contraction. And again.  So they started an emergency c-section. And then, unbeknownst to me, her heart stopped.  All I knew was all hell broke loose. The surgeon started throwing the instruments onto the tray.  And yelling.  They slapped a mask on my face and that was it.  I don't remember anything until I woke up after. Except for two things.  One is this nagging feeling that I've forgotten something.  The second is this incredible feeling of calm.  I knew I was fine . I knew Feisty Pants was breathing. Everything else was details.  It was a Catholic hospital.  They kept asking me if I wanted a priest for FP.  I didn't. I knew if only for that moment that everything was good.  That's where I got my rollercoaster ride analogy for raising a disabled child. It's not the ups and downs.  It was that first seemingly calm ride up that first big hill where all seems peaceful before you hit the downward side.
           That last paragraph is remarkable for one thing. I am not calm person.  I have adhd.  I have the personality of um, er let's say a husky.  (Read that as stubborn and hyper.)I've had to learn the hard way to think before I speak.( Shut up. You have no idea what I manage to keep to myself.)  Most of time, I am multitasking like a meth addict and tripping over my own feet .  But that one moment of complete and utter calm has not yet left me completely.  (I wish I could call it up at will, but I will take what I can get.) I felt it again when watching people do cpr on Feisty Pants when she was ten months old.  And  when a hospital was trying to bully me into signing for a tracheostomy.  Times like that.  
            I am thinking upon this for two reasons.  My eldest is about to go through all this on her own.  Hippie Pants is sweet and funny and awesome and scattered and right now, a little scared by the enormous change about to happen to her.  I want so much to lend her that "everything will be ok no matter what " feeling to her.   She's had a scary and huge year.  Last year started with her standing by the grave of her boyfriend.  She has withstood accidents, murder, friends coming and going as their own lives gel into adulthood.  It ends with a new life and a chapter as her life that begins to gel in ways she did not expect.  I want to know that she knows she is made of stuff that can withstand anything.
               The other reason is that yesterday, Feisty Pants had a case of the Mondays.  She's not sleeping well. She is feisty and stubborn and self willed in the best of times.  When she is cranky, she will pull out the feistiness and use it like a light saber.  Trying to cheer her up, we pulled out the big guns. (Dancing to music.)  Her new obsession is the song Happy.  ( Which I highly recommend btw, but be warned. It is musical crack.)  It worked, with in a few minutes.  We were stupid and laughing and dancing like the dorky fools we are.
                 And that's when it hit me.  What I cannot quite remember.  What I have yet -almost eleven years later, to be able to put into words.  For some reason, for whatever reason, when I died something flipped a switch.  Or Something flipped a switch.  For me now, happiness, like love and mother and life- is not a noun.  Happy is a verb.   I hope you all find your verbs too.  Especially you, Hippie Pants.

Saturday, January 25, 2014

Some mental sage...


         Hoo boy.  It has been a long and frustrating week.  Feisty Pants is not sleeping well and is very cranky. I've spent half the week on the phone yelling at people.  Not even necessarily the right people, either.  Just the poor schlubs stuck answering the phone when I call. I cannot seem to accomplish much except run around in circles and bug the living hell outta my friends when they make the mistake of calling and saying, "how are you?"
         So, to that end, maybe it's time for a little gratitude and/or apologies to the universe at large.  Think of it as a mental smudging ceremony.  Maybe it'll help to clear out some of the negativity we are accumulating like dust around here.
         So, thank you anonymous people who put up with my bitching at you when I call.  I do know you are just trying to do your jobs.  It's probably not your fault I did not get whatever it is I needed from your company or organization.  And if you had any power to change it, you would not be the poor person stuck answering the phones.   In my defense, this my disabled kid I am speaking for and I will do whatever it takes to get her what she needs.  If at the end of the day, Feisty Pants gets what she needs and you want to hold my hand and sing Kumbaya, GREAT, I did well.  If, at the end of the day, Feisty Pants gets what she needs and you shudder involuntarily every time the phone rings, I've still done my job.  But I am not unaware that I am what has been euphemistically called a "strong advocate"  for my child.  I'm just used to fighting for her for every last thing.  So thank you for your tolerance.
       And, thank you friends, for not letting me see if you roll your eyes and yawn when I go off on a rant about whatever human being has royally pissed me off today.  I am quite sure there are days  I sound like the most boring broken record on the planet.  And yet, you are always kind and thoughtful and listen like you mean it. Friends don't get better than that.
        And, thank you, Hippie Pants, for dropping everything at a moments notice and shlepping your tired, pregnant butt over here to watch your sister and help with every day stuff so I could spend two frigging hours bitching at people and googling info on durable medical supplies and emailing only slightly sarcastic enquiries to her insurance and trying to brainstorm with FP's services coordinator all at the last minute on a Friday afternoon when all the people I had to talk to just wanted to be done with the issue and go home for the weekend with out some half crazed mom's shouting echoing in their ears.  And you didn't even complain or whine or anything. In fact, you were quite pleasant about it all.  Someone must have you raised you right. Wish I knew who it was.
          And, thank you, anyone who has had the patience to read all the way through to this sentence.  May your week be much more productive and peaceful.

Thursday, January 23, 2014

Sleeping on the job


          Sigh... so if the universe wasn't complicated enough, Feisty Pants is now not sleeping.  Sigh again...  Honestly, some days it does feel as if somebody somewhere just wants to see what exactly it will take until I start indiscriminately smacking random individuals for no reason.  Not that a bout of insomnia is the end of the world, but it sure does feel like that when you're in the midst of it.  And this is not her usual state.  Hippie Pants and I both have chronic insomnia.  But we have always had it.  I stopped taking naps at three months old (My mother was thrilled at that.) Hippie Pants had to be practically forced to go to bed at gun point.  And then would sing and talk to herself until the wee hours of the  morning.  But Feisty Pants, she is like her dad.  Early to bed, early to rise, and happy to see the morning come.  (Honestly, it is like living with an alien or exotic animal.  Her sister and I don't understand that am cheerfulness at all. In the mornings we need a coffee IV and holy water thrown at us.)
           But now, FP has flipped that on its head. All of a sudden she seems to fight going to sleep every step of the way.  And when she can go to sleep, the smallest thing (noise, lights from the neighbor's car, the heat kicking on, anything...) seems to wake her back up and then she's up for hours.  And Goo and I end up succumbing to most insidious of demons that inflict themselves upon the parents of special needs kids. The  over thinking everything fiend.   Every time something new or odd happens, you go into overdrive trying to suss it out and fix it or repeat it.   I'm good at emergencies.  Practice makes perfect after all. But little things.  They will stymie me while I am trying figure out whether it means anything significant or not.  Whether every sneeze is a new pneumonia or just a little dust up her nose.   Every odd quirk just a new symptom of her strange development (Cp kids don't follow normal growth markers)or just a kid being a kid.  So, we will probably make the poor kid absolutely crazy trying to make things just right for her sleeping.  Music on or off?(We have always played classical while she sleeps) Extra blanket or take one away?  Heat up a notch or down?  More yoga closer to bed or more yoga in am?  A little chamomile tea? Melatonin?  Tylenol before bed- is she maybe uncomfortable?  Is she dehydrated and just needs more fluids? Is it a lack of some therapy? A few are on hold right now.  Is it merely a sign of puberty? She is at that age.  At this point we are likely just bugging the hell out of her to the point where she's too annoyed to sleep. Hell, I'm annoying me already.
               And it's just as bad when something goes right.  She makes a stride or any progress in her development, and we act like we're on meth.  Bouncing right off the walls trying to redo whatever the hell it is that's worked.  Because you are rarely sure what it is.   Trust me , if we were,  we would repeat that very thing ad nauseum.  Poor kid. Somedays I wonder how she tolerates us.  Must keep up her nights, putting up with loonies like us.

Tuesday, January 21, 2014

Mea Culpa


               Well, this post a day late.  Sorry about that. Yesterday was a day off from school and Feisty Pants was bored.  Or to be more precise, I was BORRRRRRRING.  Or so I have been told.   So we spent the day, looking for fun 'tuff to do.
               So, to perhaps pay penance for my evil sin of being officially boring to children, I am posting these links of officially not BORRRRING things.  All bear the Feisty Pants' seal of approval.  Mostly.  When she is not crabby.  In no particular order.
  
20Q.net- This one is entertaining for everyone. It's basically twenty questions against the computer-
very much like the 20Q toy, but free.
 20Q.net 
 
Kaleidoscope Painter-  This is a cool little online painting program.  It reminds me of a cross between         spirograph and a paint program.  Visually hypnotic.
 
FWIS- Readymech-  This is a site of printable downloads that turn into toys.  You print out the image, cut and paste/tape and voila! homemade toys.   I don't know any kid this isn't a hit with. (Heck, most of the adults I know like this site.)
 
Poisson Rouge (Red Fish Soup)-  Simple site with stories, games and an intereactive encyclopedia designed to used by all kids, no matter what type of learner they are.  Fabulous and always free.
 
Crafting a Green World- A nice diy craft site.  The difference with this one is its emphasis on being ecofriendly. This link should take you straight to their kids page.

 
Eyewitness to History- I love this site.  It is page after page of stories from different periods in history.  Written accounts written at that point in history. Older kids will get a kick out of the stories, little ones will love you reading it to them.
 
So hopefully these might save you from being way too borrrring too.  Or at leastkeep you out of the doghouse next snow day.  Good luck.
 

Saturday, January 18, 2014

Discrimination or Incompetence?


             Ok, I would like to get something figured out. It is driving me mad.   I have in the course of Feisty Pants' life, come up against an odd behavior time and time again.  For no reason that I can figure out.  It's this phenomenon:  I try to order something, usually paid and/or reimbursed by her insurance.  (Read that as no question it will get paid for.)  But when I attempt to order/purchase  it, I get the complete runaround.  I don't mean they just refuse.  There are plenty of medical supply companies out there.  I can always go to the next supplier.  I mean they intentionally stonewall me so I cannot get even get a simple yes or no.
              First, there was the durable medical goods company that I tried to order medical equipment from when FP was small.  Things we knew would get paid for.  There are several funding streams for paying for equipment for disabled children. If her main insurance will not pay, other options are often available.  All we need is a yes or no from the insurance.   It's just a matter of filling the right forms on the medical supply company's part.  We waited for a year while the company kept telling us the insurance wouldn't answer them yes or no.  We finally consulted an attorney. The lawyer finds out the company never bothered submitting the forms.  But they knew we were waiting- we called weekly.  I went so far as to track down the rep's personal cell phone number and called him after hours at home, on purpose.  And yet, they continued to lie.  WHY?  If they didn't want the business, they could refuse.  I would have simply gone elsewhere.  They knew the products would be paid for.  Why lie and keep a then 2 year old girl without needed equipment?  Why damage their own reputation? (Trust me I told EVERYBODY who would listen about it.)
              Next, are the contractors who say they are interested in my business but aren't.   We need to have some work done the house to make it more accessible to Feisty Pants.  Simple things- a stair glide and a special bath seat put in so we can get her safely upstairs to the  only bathroom and safely bathed.  We have already have some major modifications done.  This work is relatively simple.  And her insurance will happily pay for it.  But you need three bids to do it.  We cannot get three bids to save our lives.   We have tried this several times. The bids must be submitted relatively close together in time. Or you have to start alll over again.  We can never get more written bids than two.  But we call contrator after contractor and they come out time and time again, and then we never hear from them again.  We call, they say they will get back to us, they never do.  We cannot be THAT annoying, that everyone turns down a PAID job.   And if you don't like the idea of a bid where you are tied into the written estimate, don't agree to come out in the first place. This makes no sense.  Forget how much of my time you are wasting, why are you wasting your own?  Honestly guys, if you don't want to do it, tell me.  I'd have more respect for you for telling me to go eff myself than this utterly infuriating lie of "I will let you know asap."  But we are about start trying this one again...
              This last one drives me frigging bugnuts.  It is over simple things her insurance ROUTINELY pays for, repeatedly.  Like her prescriptions.  I have drugstores lie to me and say a particular medication was not paid for by her insurance at all, only to have another pharmacy get it covered no problem.  Or a pharmacy say a medication was not available in a certain form or on back order, only to find a different pharmacy tell me that wasn't true. FP gets what are euphemistically called "youth pants' (think depends or pull ups) which are paid for by insurance.  But it is hard to find many brands in her size.  Our medical supply company is claiming they cannot get them (again the old "back order" demon.)  But the company that makes them says that that is not true.  So who is blowing smoke up  my butt??? And why???  The insurance easily and routinely pays.  Who doesn't want my business???
                Sometimes, I think it's simple human incompetence.  They don't properly fill something out or forget to press send on the computer, and the info gets lost in the ether.   And then they lie to cover their butts when I am calling and politely suggesting they get their ass in gear.  But all they would have to do, is resubmit whatever form, get the job done and I go away happily out of their hair.   And I don't go away so stalling doesn't accomplish anything but a more clipped tone the next time I call.  Or write their supervisor.  So why keep on lying?
                  The only other reason I can think of is a horrible insidious unconscious discrimination against the disabled.  And don't call me paranoid.  It's out there.  Just go look up the statistics on how often the disabled are punished in schools as compared with typical kids.   Or the horror stories of how routinely disabled kids are tortured in the name of "corrective behavior" in special education settings. (Don't believe me? Google Buzz Helmets or Judge Rotenberg Educational Center  - which is still open!!!- or Willowbrook or Pennhurst State Hospital. If they don't give you nightmares then you have no soul.)  That somehow these companies- whose sole reason for existing is to make money by providing these services and medical equipment- are simply not willing to do the thing that makes them their money.  It's like a restaurant refusing to serve food or a store refusing to sell anything.  It makes no sense.  So why do they do it???

Wednesday, January 15, 2014

For the Birds

                  "So, what you do today, Mik?"  A friend called and asked me that.  The answer was, "Taught my kid how to properly flip someone the bird. What did you do today?" Funny, she did not seem surprised. 'Cause I'm an awesome parent, that way.  Actually, there is a reason or two.  One, I was trying to give Feisty Pants a motive for trying to isolate her fingers one at a time. (FP was a full term baby- full term kids with cp tend to have more control over their legs than their hands. Preemies are the opposite.) Two, it made her laugh hysterically and stop crying for five seconds.  (She has not been sleeping well and is very cranky.)  Go ahead, give me a more obvious reason for raising just your middle finger.  I'll wait.  High tea only works for pinkies.  And the lesson came with a lecture of when NOT to do it. If you make someone feel bad with it, you are being a bully.  Feisty Pants has definite thoughts on where she stands with bullying.  And I have definite thoughts on where I stand with getting my kid any independence.  If I gotta motivate her with swear words or bribe her or allow her to flip the bird, so be it.  You can call it a lack of scruples or manners, I call it knowing what motivates my kid.  And while I do expect her to have good manners, manners are supposed to be about acting in a decent and kindly way towards your fellow human beings. I could give a rat's fanny about them when they are used for mindless conformity. Then the manners become the weapon of the bully.  And someone should be getting the bird.
                        So we spent the afternoon flipping off the fish and the cat and the tv.  None of whom seemed to care.  (Feisty Pants did check to make sure the cat's feelings weren't hurt. I am glad to report that they weren't.)  No fear, she still doesn't have it down pat yet. I don't think I'll get any bad reports from school.  FP is accompanied by a nurse at school, so we will warn her anyway.  And the rest of you can all lighten up if I have offended you.  Once you have a kid like FP, and survive with any sanity (dignity flew away long ago) intact, you learn to take a second look at what is truly important to you.  I care that she is healthy and happy and independent.  I care that when she goes to school she LEARNS.  I care that she cares about being a decent, moral, kind person.  I do not care is she comes home covered in glitter with paint in her hair. Or if her socks match. Or says a few choice words in public.  If you are ever expecting one those sweet, clean cut, soft spoken children I have heard legends of, I can assure you will not find them coming out of this house. Don't get me wrong.  My girls are awesome and kind and funny and cool in ways I can only wish to ever be.  But I am not capable of raising shy, demure, shrinking violets.  No way I would ever want to.  Good thing too, because it's just not in our dna.   We are much more Dan and Rosanne than Ozzie and Harriet around here.  I guess if we really offend you, you can always just flip us off.                            
 

Tuesday, January 14, 2014

Impressive


         Last night, Feisty Pants and Goo were watching Antiques Roadshow ('cause we're just gangsta that way) when someone appeared on the show with a painting by Louis Aston Knight (an impressionist).  To which FP got all agog and declared she wanted it. She does seem to have eclectic tastes, that one.  It did not even have glitter or glow in the dark or anything she usually requires to qualify as fine art.  My first thought, was "huh, expensive, but good on you, Kid." Interesting to see her tastes come out.  My second thought, however, was "Holy CRAP- this kid is cortically visually impaired.  What does she see in this?"
         Seriously, we have no true idea of exactly what her vision is like. She is legally blind.  But blindness refers to clarity.  Most people think that blind means the absence of vision. A perpetual darkness, like having a blindfold on.  But blindness is a whole gamut of blurriness and shadows and colors/absence of colors and detail.   In Feisty Pants' case, her eyes work.  Her brain doesn't quite know how to put the pictures together properly.  I have worn goggles that (as near as anyone can tell)  simulate CVI.  It's a wash of colors and shadows but little detail.  Think of looking through hammered glass shower doors.  But her vision is kinda like swiss cheese. Most of it is that blurry hammered glass but in it are small holes (hence the swiss cheese analogy) where her vision is clear.  But for some reason, the holes move.  Also, some new information is coming to light about how people with CVI adapt to it.  (Doctors have finally learned the trick of asking an adult with CVI to best describe the condition. Honestly, sometimes they need to their heads out of their, umm err, books.)  There is a particular tic to people with CVI -they will spot something and then immediately turn their head away. (It's a hallmark of cortical visual impairment, in fact)  Turns out that vision is somewhat like polaroid film.  Your brain takes the picture and then instantly develops it.  It's so fast, you don't realize it's happening.  But with CVI it takes longer. That immediate turn AWAY from what they're looking at, is an unconscious way to avoid any more stimuli so their brain can simply develop the picture it just captured. (The polaroid analogy comes from a man with CVI who now lectures to low vision specialists on what it's like to have CVI)  And since, it's the brain, not the eyes there is some hope to improve the functioning.  
                When FP was an infant, she did not even see the whole color range.  But therapy can and does help this.  So now we know she sees color, shape, and outline.  And movement if it is not too fast.  And the level of "too fast" has improved over the years.  But we still don't know how much detail she has.  Or how her depth perception is. (And depth perception is actually two different kinds of perception, near depth and far depth- one is relates to how the eyes work together, the other is in your brain) Going by her aim at swinging at a medical professional only gets us to a rough guess. (And THAT has improved over time too.)   And she is very talented at what is known as "cognitive mapping" which is knowing where things are by memory. (Like the way you can find your way through your own house in the dark)  Which means sometimes she traversing her world through her mental map as opposed to watching where she is.  And merely asking doesn't work yet. She has always been this way.  This is how she perceives her world.  How would you explain blue to someone who cannot see color at all?
                 So, now I wonder.  What did she like about it?  It was impressionism, for goodness' sake.  CVI kids like high contrast and bright colors and simple line drawings because it is easier for their brains to put the picture together quickly.  They're likely to be more into Haring than Monet.   But she does have those spots of clear vision. And she did tell us about how pretty it was.  Maybe there is more to impressionism than just the picture.  Maybe feelings can be transferred through the art.   
                Or, maybe my little Artemis Fowl was simply impressed by the fact it was expensive and therefore must be awesome, so now she wants it.  I am going to be wondering about this all day.                                    

Saturday, January 11, 2014

Joyful

                So, George Takei, the actor and great patron saint of geeky internet memes has posted something on Facebook that said, "Talking about problems is our greatest addiction. Break the habit. Talk about your joys."  While I don't one hundred percent agree (we cannot fix what we do not acknowledge), it did give an idea for this post. (Thanks Uncle George!)
                I wanna talk about some joys all you parents of typical kids probably are not going to be granted the privilege of knowing.  Not that there isn't a million joys in any parent's life.  Not that we don't ALL take the small things for granted occasionally. But there are moments that hold a different sweetness and flavor when your kid is truly different from others. And if you are just starting down this crazy path, someone needs to tell you this.  Forget all that "God won't give you anything more than you can handle " nonsense. That is almost always said by someone who does not have quite as much to handle, thankyouverymuch. They mean well but it comes off as a tad insensitive, at best.  You need someone to say, "Yes, sometimes is tough but it ain't all violins and handkerchiefs .  Sometimes its funny and awesome in ways no one else ever gets to see."  Little things that probably don't mean much to a typical kid's life.                   
                For example, swearing. Seriously you have no idea. (I may one day, write a post about why the f bomb is the most beautiful word in the English language. I have a reason. I'm not quite ready though for sharing that one yet.)  But swearing is a deliberate, albeit naughty, act.  When you are (mistakenly)  told your kid has little cognitive ability, using a swear word at the right (wrong?) moment is great indicator that something is going on in those adorable heads of theirs.  Same with lying, mind you I do NOT want to be raising the next Professor Moriarty, but I had to walk out of the room the first time Feisty Pants lied to me.  Lying means they know what they did was wrong and there will be consequences for it. I did not want to her to see me literally jump for joy and set up a bad precedent. Funny, I did not have that reaction the first time her sister lied or swore.
                  Even simpler things are joyful, one of my favorites is breathing.  Quiet, relaxed breathing is a major joy for me.  Feisty Pants does not swallow well.  She has been very sick about a bazillion times, it seems.  Goo has done cpr on her more than a handful of times.   Her not breathing is scary in ways I don't even have words to describe.  Struggling to breathe is almost as bad.  She is a noisy breather even when she is well due to the swallowing issues.  So, days when the universe is kind to us and she is relaxed and breathing quietly are a joy to behold. Not exaggerating. I can simply watch her breathe like that for ages. Does more for my soul than all the yoga and dark chocolate in the world can, combined.
                  Teasing is a fun one.   Not teasing her. Watching her tease someone else.  Feisty Pants is called Feisty Pants for a reason.  She is mischievous and clever and ALWAYS thinks she should be in charge.  So, she gets a big a kick of minor defiance of any silly rule adults think to try impose on her.  She will wait until her father is NOT looking until slowly doing something funny (like removing socks or pulling apart her feeding tube from its adapter) while going "Oh GOOO. Oh GOOO" in a sing song voice to make her father lose his mind.  This will keep her entertained for eons. (Again, if she does turn out to be a Bond villain, I do apologize. It's just that it's so damn funny now.)
                   My new joy with her is a joy of her own.  Fp's speech is very garbled, often she doesn't speak to many people because she gets quickly frustrated at not being understood.  Until you have spent enough time with her, you will not understand her speech. It sounds mostly like she is whining. She knows what she is trying to say.  She knows she is hard to understand.   Not many others do.  So when someone just simply understands and replies like say, any other frigging human being on the planet, she beams from ear to ear.  If it's a stranger who understands, she actually will laugh out loud.  That is a MAJOR joyful moment for her and therefore, I think, an even bigger one for me. 
                    So, you will find joys and peace in the chaos.  You will have loads more fun than you realize when this ride starts.  You just have be ready to see them for what they are.  But isn't everything that way, anyway?
                    

Wednesday, January 8, 2014

Snow Days


                  Okies, since it's a tad chilly here in the Southern Tier, I thought I would post (read that as swipe gleefully and post) some ideas for fun indoor outdoor activities. You know the ones that bring the experience of bringing the outdoors in, without having to brave single digit temperatures or negative double digit wind chills.  Mostly I got the idea from having entertain Feisty Pants, whose school was canceled yesterday and had a two hour delay today.   She's not sick, so apparently it is NOT too cold to go outside and I am just mean.  Just ask her.   So in desperation (one can only find so many bigfoot/alien/ghost documentary shows on tv at one time) and after some skepticism on her part, we resorted to interacting with each other.   So in no particular order, here's something that may keep you from having to mail those pesky short ones to Grandma's til spring.
                     1)  This one's probably the easiest.  Simply, bring in a large cake pan/roaster full of snow.  All the fun of a cold sensory table. Throw in few toys. If you don't mind a bit of mess add some food coloring to the whole shebang.  They'll happily play til their fingers are numb or the snow melts.  And then its just some water to slosh around with. I don't mind a little mopping if gets me one whole cup of coffee's worth of time without a grumble.  And the clean up is easy as pie. Just dump into the sink when done, dry the toys and put away.
                     2) This one's a little more geared towards a kid with at least some fine motor skills. But it kept FP's sister occupied for hours when she was small.  We would collect some twigs, branches, dried flowers, leaves etc and store them in a bag.  When we had a snow day, I would get a shoe box (or any smallish box really), some elmer's glue, and whatever little odds and ends I could think of (empty spools,those little plastic doohickies that come stuck in your pizza, boxes that jewelry comes in etc.)and finger paint and we would build a fairy house.  Think doll house as if built by hippies.  It would keep Hippie Pants busy ALLLL day and best of all, she would then use it as a toy for months on end.
                      3) If it's really cold, you can always do the instant snow trick. It's everywhere on the interwebs if you look.  Simply take a pan of boiling water outside and toss away from you. If its cold enough- poof instant snow.  Your kids will be impressed. If they are really small, they will think you are a wizard.  Don't tell them otherwise. That wizard schtick only works for so long.  Enjoy it while you can.
                      4)This one will not keep them occupied for long now, but come summer they will think you are awesome sauce.  Make a cake pans (or cookie tin) worth of snow balls and store them in your freezer.  Explain it's to keep a bit of winter with you in the heat of summer. In the summer, have a snowball fight.  They will think you are AMAZING come July.  Hippie Pants STILL does this every year.
                     5) This one we have not tried personally yet, but I think we will very next snow day.  Collect some leaves, berries and bird seeds and ribbon. Place some of each in the bottom or a muffin pan or paper cup, add enough water to cover, and a bit of the ribbon with one end free (to make a hanger) and freeze.  When frozen pop out and hang from a tree or bush in your garden. They make pretty decorations and as they thaw, they feed the birds. 
                    So, there you have it.  I hope this keeps your kids entertained and you sane. If not, well the Post Office will ship any package for a flat rate up to 70 pounds and after that they should be big enough for a bus ticket. Or you could just break down and (shudder) talk with them or something.
                 

Monday, January 6, 2014

arrgh...


         Arrrghhh.  I am so infuriated right now.  I just got off the phone with Handicapped Children's Association.  Feisty Pants' aquatherapy has been put on hold indefinitely.  The pool at BDC (Broome Developmental Center) needs repairs and NYS so far has not approved them.  What bullshit.  Don't even bother pardoning my french right now. I want someone to be offended by my attitude and my words. I want them to sting.  This is horrible and deserves horrible words.  How dare anyone act like these kids are not being ripped off by the state's cost saving measures.  How dare all of us not realize that state is wasting OUR tax money by not spending it properly.    I pay taxes too. And I damn well resent the idea, that my taxes are going to make sure some corporation does not have to pay their fair share.  I don't see much job creation around here. So what benefit are they providing for their breaks????  Forget the moral issue of providing for vulnerable disabled children.  The whole point of intervention in children's lives is simply that it costs LESS to do it now and make a bigger impact than spending more later. (As in the old sayng  its cheaper to build schools than prisons.)  It's cheaper to provide therapy now than nursing homes and specialized nursing care later in life.  We are wasting children's minds and potential that could benefit all of us the long run if we simply don't act like miserable cheap bastards now.  These services are NOT charity. They are an investment.  An educated healthy populace makes contributions to society that WE all benefit from.  How many potential Jonas Salks, Helen Kellers, Stephen Hawkings, Marie Curies are simply being wasted because some pencil pusher wants to be cheap???     
                       And its not even necessarily long term results in cost savings either.  Aquatherapy has an interesting  side effect on kid's like Feisty Pants.  Therapy pools are warmer than other pools (avg of about 93 degrees) This relaxes her spasticity.  Couple that with the pressure of water on her body and she coughs better.  And the pressure on her body itself helps move any fluids and mucus in her lungs.  This means her lungs become much clearer after a session of AT.   So for the  cost of simple therapy session, we not only get the benefit of brain stimulation and muscle stimulation, but we are another step along the way in NOT having pneumonia.  Not racking up a 65 THOUSAND dollar PICU stay, a 25-40 THOUSAND dollar medivac helicopter ride to another hospital due respiratory distress, the bills for antibiotics so exotic the CDC has to approve their use in every individual case.  And up until last week, FP wasn't even theoretically eligible for private insurance.  No one will cover her.  So guess where the bill goes?  One hospital stay alone out costs the repairs many times over. And that's just ONE kid in the program. 
                   Let's face it, we know why the state is dragging its feet.  They want to close the Broome Developmental Center. Fine.  But what are you going to do about providing the services for outpatients that can only be gotten there?  What are going to do about the sex offenders housed there that are not safe to allow into the populace at large???   My child is simply the first (and most vulnerable) in line to be harmed by this ill conceived decision. What happens when its all of our children at risk of harm?   I am not going to drop this.  I will not let this go.  (I already have raised one teenager.  Feisty Pants is heading that way -she's almost eleven.  I have become very good at nagging.).   If anyone would like to help, you can look around and sign a petition or two.  And if anyone knows of new ones, shoot a message in the comments or hit me up on google plus or facebook (under Mikki Chalker.)
                   

Friday, January 3, 2014

Thanks, Baba Yaga

               As I sit here typing this, Baba Yaga (or Grandfather Frost or Jack Frost or whoever is your version of the spirit of cold) has really paid the Northeast a grand visit.  Close to a foot of snow has fallen with this last storm and currently it is 2 degrees below zero with a windchill of negative 20 something or other. There are a lot of people shoveling out and dreaming of palm trees and warmer climes.  I am not one of them.  Yesterday's storm and today's cold are my happy place.  This a post to THANK Baba Yaga for showing me such a lovely time.
               I am not a fool mind you. Goo and I usually walk to our local grocery store on Friday mornings.  Feisty Pants is normally in school and except for our cells in case of emergency, we get to have a few blissful hours of nobody wanting anything from us.  And get some form of exercise other than jumping to conclusions.  But FP is on vacation so no way was I dragging her out in this.   Freezing temps are usually better for her (no mildew) but this level of cold  would take anybody's breath away.  But I don't live outside.  And I do live in the 21st century with central heat and good cable and the internet and automatic coffee makers.  Feisty Pants got a ton of fleece pj pants for Christmas, so she is warm and comfy and watching reruns of Tanked on Discovery and bitching we won't let her go out in the snow.  And Goo gets to go to sleep a few hours earlier than planned and sleep until he just simply is ready to get up. (A rare and wondrous thing in this household.) I'll simply use this time to do the chores I would do tomorrow (we will go run errands then)  and try to be graceful about having to be flexible.
               Which is, in a kind of round about way, my point.  As the mother of a special needs child, I am really good at the big important kind of flexibility.  You know, the holy hell its three am , pack your bags, we're going to Philly now kind of way.  I actually used to keep at suitcase packed at all times.  (I have two sets of clothing- my old ratty get coughed at home clothes and my better go the hospital and coughed on there set.)  What I am bad at is the little oops you gotta to go the store LATER kind of flexibility.  I am used to having to get everything done NOW rightthisveryminutedammit or I won't be able to get it done.   Having to bend a little is probably good for me.  And the fact is having to bend because of the gorgeous snowfall and the exquisite stark cold day out there makes it easier to do. I absolutely adore storms, and snow and ice are some of my favorite things on this planet.  So if the lesson is one being graceful in defeat of my purpose, if the lesson is to learn to be flexible even when my goals are thwarted, then thank you Baba Yaga for giving  us a lovely storm and the beauty of winter snow and ice to mollify the annoyance of the lesson.  

Wednesday, January 1, 2014


      Well, now. As I sit here typing, Goo (the hubby) is in the  ER. He had a doctor's appt this morning and they sent him over.  Sigh.  I suppose that's what I get for bragging about my normalish Christmas.  I don't think it's horrendously serious, but it's awful enough to need an ER.   And it's bad that I can't go to know.  We literally do everything in shifts.  Not knowing is the worst.  Besides being nervous for him (He's at that age where acting like you don't need to take care of yourself begins to have consequences.), now I worry who will stay up with Feisty Pants if he cannot.   And I feel bad that I don't just feel worried for him, but for all of us.  I never know really, whether that makes me practical or just selfish.
          I do know, however that it makes me angry and frustrated.  The man is a grown man and yet if I didn't nag him, he would live on reeses cups, bacon and coffee. And he laughs at the idea of doing yoga or going for walks with me.  In case, men, you ever wonder we seem so pissed all the time, it's because you have the luxury of acting like frigging teenagers while the women make your doctor appt's and pick up the pieces when you are in the ER.  And then, when you get together with other husbands and boyfriends, you find it funny to laugh about our attempts to get you to be healthier.  You make jokes about bacon being health food or exercise being for girls.  Or complain about women being controlling because we want you to act like adults. Or even worse, complain we are cold and insensitive when we don't seem very sympathetic to your aches and pains when you don't take care of yourself in the first place.  A question, husbands of the world, would have sympathy for an alcoholic who is complaining about his hangover?  Or, more to the point, would you sympathize with the guy who complains about his car repair bills when he REFUSED to ever change the oil in his car? Your actions don't just affect you, you know.   If the car blows up because you did not care for it, we are walking too.  And so are your children. If you drop dead of a heart attack or stroke because you were too much of a "man" to have "time for that crap", then we are the ones burying your spoiled butts and picking up the pieces of your kids' shattered lives.  For about the millionth time, being a grown up does not mean you can do whatever the hell you want, about no one having the right to tell you what to do.   It's about no one ever needing to have to tell you what to do because you are already doing the right thing.  Being an adult is all about integrity.  Not age, not power, not money.  Integrity.
              Moreover, taking care of your health isn't neurotic or girly or weak, it's about making sure you are in this world for the long haul. It's about being there for your wives/girlfriends/boyfriends/husbands and families and kids.   It's about not dropping out halfway through by dropping dead.  It's about showing us that you know commitment really is a two way street.  By caring for you, you are caring for us.  The same thing we are trying to do when we make your doctor appointments and nag you about your diet and bug you about exercise.    We are just trying to make sure WE are all in it for the long haul.