Sunday, May 1, 2016

An Apology in Advance

                So, whoop whoop whoop.  This is not a drill. Repeat- this is not a drill.   Grandparents are due in two days.  Repeat, grandparents arrival imminent. 
                Seriously, I apologize in advance.  The grandparentspalooza tour is incoming.  My parents will be here this week.  (What?  This week not this weekend, you say?  Yes.  But why?  Because school night bedtimes and rules are for squares, Narc, that's why.)  Feisty Pants is properly thrilled.  First, she got to run away and join the circus this weekend which she loved. They had clowns and elephants and peta protestors and everything!    Now she will get to go out for Chinese and go shopping and invite people over for pizza.  It's like she gets to pretend she is a real live girl and not some horrible prisoner of the most boring people on the planet.
                 And, so, I apologize.  My parents are coming to swoop in and behave like a cross between Tante Kringle and  smart alecky toddlers with credit cards and driver's licenses.  (What? It's three am and you want ice cream? Of COURSE, let's go!! Coffee flavored ice cream in a monster float? Why, yes you can! Your parents can sleep when they're dead. giggle giggle giggle )  They will not settle for being just a small party either.  They will get here and start calling my in-laws and invite them along. Feisty Pants for her part will adore this and get right into the spirit of things.  Staying up until the wee hours of the morning. (We cannot afford to miss a thing, now can we?)  Getting into the spirit of the party chaos. (Last year, she pulled out her g-tube in the middle of the Chinese restaurant and threw it.   Fun fact, they have a koi pond there.)  She cannot wait to show her new hair do with the pink streaks.  I hate pink and gender stereotyping- so my mother will give her money for doing it I am sure.  Life is no fun without a co-conspirator.   FP may have to share the squees with her niece and nephew, so we will see how she handles that.
               I am hopeful that she will not be obnoxious once they go.  Usually she is not tooooooo bad.  Not overtly rude but completely befuddled if things don't automatically go her way.  A week of being told you are made of rainbows and unicorn glitter and that the sun rises when you do and sets on your bellybutton does have its effects.  My mother once told me before I had kids that she "considered grandchildren revenge".  She was not kidding around.  You have all been warned. 


Tuesday, April 26, 2016

Happy Belated Earth Day!

        Ok, so I meant to post this on Earth Day.  But,since I already gave the world an amazing earth day gift on the twentieth anniversary of the first Earth Day, I was babysitting so the gift could go out for her birthday. (I gave you Hippie Pants.  She is very green and wants to save allllll of you.  You're welcome!)  And, since both Dinky Pants and Mellow Pants are both under two, they spent the evening taking turns shrieking and throwing up and/or spreading mucus everywhere, so I got nothing written  We were busy being very earthy here. 
        Oh well.  It really doesn't make a huge difference as I am always at least a day late and a dollar short.  Everyday should be earth day, anyways. We should already be reducing, reusing, and recycling.  It's not just better for the earth.  It's also better (and cheaper!) for us. So with that thought in mind, here are a few upcycled and green toy ideas.  They are easy, fab, and definitely green.  (Bonus, doing this with your kid counts as good parenting.  You're welcome again.)
1) This my favorite- got a big cardboard box?  Got crayons and/or markers?  Got a kid?  Put the kid in the box with the crayons.   Tidy house or surf net or sip lattes while he is busy. Admire artistic endeavors afterwards.
2) This is a great link to a slideshow of easy diy toys made from cardboard  boxes and tubes from the DIY network.  There are a few really clever playhouse ideas if you have a BIG box.

3) Water painting- great for little ones and very zen.  All you need is a container of water (a sand pail or bowl) and a brush.  Some colored paper if you want to be all fancy.  Just let the kid take his "paint" and brush outside and go to town.  Best of all  -no clean up. If your kid is really clever, you could teach him the idea of "art as an exploration of impermanence", because if they don't learn pretentious nonsense at home they will only pick it up in the streets and then where will they end up?

4)Diy Cd hovercraft- this one is a great for older kids to make. Everyone will have fun playing with it.  You will need the flip top from a dish soap bottle, a cd, a balloon, and a glue gun.  Instructions are here from the Chocolate Muffin tree.
           So there ya go.  Hope you have fun.  And please, do reduce, reuse, and recycle.  There is only one Earth and we do have to share it.

Sunday, April 17, 2016

Sh*t special needs moms say

        The great saint Erma of Bombeck once defined mother tongue as the only one that ever has to say, "Did you flush?" Since she and the Blessed Mother Rosanne are two of my favorite holy women, I thought I would make this post about all crazy, funny stuff I never thought I would say (or overhear) I hope this garners a few laughs and not phone calls to CPS. 

1) "If you pull that out of your shin, the doctor will just have pull out his drill and put another hole in your shinbone." (Said with a really exasperated tone.) Didn't work, she pulled out the IO anyway. Doctor did, indeed, pull out the drill again.
2) "Please stop trying to feed your g-tube to the dog."  The sad thing is, I have this sentence on repeat in my playlist. 
3)"Sweetie, can you go get me your sister's k-y jelly out of the medicine chest? Can you hurry? " In a million years, I'd have never thought I would say that once. EVER. Now I have said it about a hundred times. (See above.)  It's what we use to put her g-tube back in when Feisty Pants yanks it out.  You should see the looks on the faces of people over that one.
4)"Did you just say motherf@##=¥?  I'll give you a hundred bucks to say that to your speech therapist! "  Not sorry. No regrets on this one.
5) "Please don't punch the dentist this time. You know it upsets him."  This one wasn't me. I'm fine if Feisty Pants ONLY punches him.
6)"OH DEAR GOD WHAT HAVE YOU HEARD?!?" Said to me by another mom whose feisty one ran up and introduced herself as one of FP'S friends. Upon hearing her name, I mentioned that I had heard about her.
7)"Listen, it's fine if you don't want to wear your underwear, but you will not wear it for a hat."  Again, this one was not me. I overheard it in a locker room after aquatherapy.  And I'd probably let her wear it as a hat.
8)"Nahhhh, but my sister's got a femur of titanium."  This was said to me not by a mom but by a special needs kid.  His mom (who had two kids with brittle bone disease.) and I were chatting about holidays missed due to hospitalizations. This was his response when I told the mom she must have an iron spine.
9)"For a doctor, you're an idiot."  I overheard this one in a pediatric ER.  I am not sure what prompted it, but that mom is my hero.
So, what's the funniest thing you've ever heard come out of your mouth?


Sunday, April 3, 2016

A blessed moment of boring

       Hallelujah, we are back at school.  Which means Feisty Pants is back in her therapies. Back to physical, occupational, visual, and speech therapies. YAY. Plus gym. Plus regular classes. Plus friends. Plus cute boys. She even came home on Friday and told me she had been kicked off the bus for two days for swearing.  I was shocked- just SHOCKED,  to find out she was pranking me because it was April Fool's day.  I didn't stop to think at all that the two days were Saturday and Sunday so no school anyway.  (Don't tell her.  It will break her heart to think she didn't fool everybody. She laughed for an hour at her own cleverness.  After all, we adults are old and stupid.)
        Best of all, she is finally sleeping (cue angels singing and harps strumming) so maybe, just maybe we old farts will catch up on some sleep too.  (What did I ever do to you, anyway, Morpheus? Why do you mock me so?)   It's going to cold here for the next week too. YAY!   (Listen, all you warm weather lovers can bite me.  I watch you all swanning about all summer as if we weren't stuck in the first level of Hades while I lay on the floor and melt into the floorboards.  You can all give me one week of bliss and sleep.) Here's to hoping the cold kills off the mildew and Feisty Pants allergies are beaten back into submission a little bit too.
           So, here we are in a glorious little in between time.  No holidays, no birthdays, no parties to throw for a few weeks yet.  (The grandparentspalooza will roll into town in a few weeks or so. I apologize  in advance for Feisty Pants attitude afterwards.) No major doctor issues.  Just a routine g-tube change. Too cold for yard work yet.  No major medical procedures scheduled until the summer. So we will just try to catch up on sleep.  Figure what paperwork we are surely behind on. (There is ALWAYS paperwork with a feisty one.)  Argue over what TV show to watch.  We may even get to pretend to be normal for a change. Heck, I may pretend to do a craft or too.  I haven't sent Feisty Pants in with blue dye on her fingertips in while.  It's always fun to make the staff at school freak out because she looks cyanotic.

          So, here's to a little moment of blissful nothingness.  May your hectic times be brief. May you catch up on sleep.  May your messes have been worth it.

Sunday, March 27, 2016

And the party continues

         Ain't no party like a Feisty Pants party cause a Feisty Pants party don't stop.  Until five o'clock in the effing morning.  Sigh. Can you tell there is a vacation this week?  If you ask most parents of school age children, they will admit it's just easier when they are in school.  Sure, everybody's got to get up the morning but you trade off that for getting stuff done.  I wasn't normally like that.  Hippie Pants has always been part vampire/bohemian/nightwalker and would sleep until noon if you let her.  Summers and vacations were a breeze.  I always got up before she did and had time for a cup of coffee before having to deal with another human being.  And she woke up like me.  So there was a gradual acknowledgement of any others and it gives you time to acclimatize to the fact that other people exist and one might have to deal with them occasionally.
            Feisty Pants, however, is NOT like that at all.  I blame her father.  When left to his own devices, he wakes up early and cheerful.  Honestly, he should be in a zoo.  Or at least in a cage, safely away from normal people.  He might inflict his cheeriness upon them. Feisty Pants is the same way.  Early to bed and early to rise is her motto.  And get out of her way, she has things to do.  And she does, indeed insist on being quite chipper in the am, just to be spiteful.  Except when she is on break.  You see, when you cannot move or see properly, you brain does not get the everyday workout it naturally craves.  (That's why blind people tend to rock and sway.  The brain is craving input.)  When Feisty Pants is on break there is no physically therapy, no occupational therapy, no visual therapy, no speech therapy, no gym.   And right now- no aqua therapy or massage.  All we have this week is music therapy. So even when we try to entertain her, her little grey cells are bored to tears.  In the past week, she has been to two parties, gone shopping three times, cooked with me, and watched a gazillion movies.  And today is Easter.  Yet, she is still so craving brain stimulation that she is now staying up until the wee hours of the morning. Seriously, we have seen 1 am every night.  And three and five am are not unheard of.  The only people who should be awake at three am are vampires and cat burglars.  I could sort of see it (she is thirteen after all) if she then slept til noon.  But alas, no.  Seven am is her preferred wake up time and that is written in effing stone.  So now FP is bored and cranky.  I would kidnap her therapists and teachers if I knew where they lived.   I would not be convicted by a jury of my peers.  All I would have to do is get one parent of another feisty one on that jury. 
          I can do nothing but take solace in the fact that it is the last day of break.  Easter dinner is over and everyone is pleasantly stuffed full of yummy goodness. The dishes are done (thanks Goo!).  Feisty Pants has had her shower and is in her pj's.  Zombies are about to start shuffling across the tv screen.  Hopefully she will pass out before the cock crows.  If FP falls asleep at a reasonable hour, it will be a true Easter miracle.  Hope your holiday was lovely and chocolatey.

Saturday, March 19, 2016

Party Time

        So Feisty Pants and I and the rest of the traveling circus are attending a benefit today.  So I am sitting here eating a veggie burrito and listening to a jam band called the Groovy Boys. I feel like I am just a few bad decisions away from college.  (I do not care what you all think, I loved my mohawk.) Feisty Pants is licking frosting off Goo's cake and bouncing to the music.  I am sitting in the corner and writing this.  Because I am just too cool that way and in no way a nerd or anything. (I am too cool. Shut up...)  
         Feisty Pants for her part was thrilled to find that a manicure is one the prizes being raffled off and stuffed the box for it after conning half the family into buying her raffle tickets.  Dinky Pants seems to think that cake and cookies magically appear in old people's hands because they keep handing them to him.  We have a second band taking the stage now (actually the third but we had to wait for Hippie Pants to finish work so we were late.) This new band's singer is a girl and that seems to have enraptured the mini rocker.  The person for whom the benefit is being thrown (a family member battling cancer) feels very loved right now, and perhaps a bit tipsy, so if that doesn't make this a big success nothing ever will no matter much money it's making. Or should, for what it's worth.
          Which has got me thinking, of all the crazy, seemingly illogical ways we humans deal with illness and tragedy and disaster, this one is not the worst. We often pull back, not knowing what to say or do and fearing we will offend.  We sometimes cut off the ill or suffering person, instinctively fearing contagion that really is never forthcoming.  But, this, when we instead circle our wagons and embrace our tribesman or, amazingly, the stranger at our door, this is all of us at our best and brightest.  When we start to think of us instead of me.  When we help instead of harm.  And best of all, when we help with love and food and music and dancing. This is why we are having this physical experience called life people.  This is the kinda thing that gets my tired tushy out of bed in the morning. This is beautiful.  I wish you all love, peace, and when necessary, a tribe that brings the burritos, jam bands and raffle tickets 

Tuesday, March 15, 2016

Cerebral Palsy Awareness

       March is Cerebral Palsy Awareness Month.  For those of you, dear readers, who do not know, Feisty Pants' main diagnosis is Severe Spastic Tetraplegic Cerebral Palsy due to Hypoxic Ischemic Encephalopathy due to Traumatic Brain Injury at birth.  (It gets all those caps because I tread warily around mine enemies.) Since Cerebral Palsy is such an intimate part of our lives and thus the cause is near and dear to my heart, I thought I would make this post about spreading awareness of the condition and post some helpful links.
      Cerebral Palsy is the term used for several neurological disorders that appear in infancy or childhood and cause movement disorders and muscular issues. Basically, they are disorders of movement and posture caused by damage to or abnormal development of the cerebral cortex of the brain (the motor control area).  It is nonprogressive (will not get worse) and up to now, has no cure.  (C'mon Universe!!!) Unlike what is actually often believed, only 5 to 10% is caused by birth trauma.  (That is what happened in Feisty Pants' case.)  The other causes are possible abnormal brain development, premature birth, brain injuries in the first few years of life. You can also add seizures and serious infections to the list too.
       What happens in CP, and this is a very basic overview, is that the brain cannot lay down new patterns over the basic primitive infantile movement reflexes properly. The pathways have a harder time forming, if they do at all. It leaves one with rebellious muscles and reflexes that will not obey one's command and make normal movement difficult. I'm probably understating this.  There are two kinds that I know of personally (know more? add it in the comments) spastic and athetoid.  Spastic involves the muscles contorting and contracting when they shouldn't.  FP cannot, for example, lift an arm with out her head turning, due the strength of her infantile reflex that we are all born with.      Athetoid usually involves an overflow of information travelling the nerves- seen in people whose cp leaves the movements looking jerky or random like.   

        There is, so far, no cure but treatments and therapies are developing all the time. (C'mon stem cells!!!) The best hope right now is lots and LOTS of early intervention.   Therapy. Therapy. Therapy.  (Oh and btw, insurance people who are cutting back on therapies right now, there is a special place in hell for all of you.  EVERY SINGLE ONE OF YOU.)  If you need or want to know more  start with these links.  (Know any other links? Add them in the comments. Knowledge is power, people, share the wealth.)

United Cerebral Palsy- national organization page

Handicapped Children's Association- serves as Greater Binghamton Area's local UCP chapter

Family Resource Network- a great source for kids with disabilities

Parent to Parent of New York State- great resource for networking  (Not in NY? google your state's version)