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.                            

 

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.                                    

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?

                    

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.

                 

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.)

                   

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.  

      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.