Saturday, August 22, 2015

Special Hot Dogs

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

Saturday, August 15, 2015

Magic Moments

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

Wednesday, August 12, 2015

Avoiding Brain Drain


                         Well, while we were busy being busy, summer seems to have meandered it's steamy way  on through.  Summer school is almost over.   Feisty Pants has only a few days left of  scheming to sit next to the hot boy at school.  At least, until fall.  Which is a million miles away or three weeks depending on how you look at it.   And she has already started her preteen party session.  Last night she sang until 3:30.  AM.  As in "why do you hate Mommy and want to kill her with sleep deprivation?"  3:30 AM.   You would think she would be just exhausted today, but nope.   Feisty Pants is happily watching a movie with Goo.  Chillaxing and biding her time until it is once again time to sing us all the song of her people.  (Last night's theme was Madonna's Ray of Light.)  
                          So, I guess I'd better get off my fanny and finish looking for ideas to keep her busy for the next three weeks. Less brain stim for her means waaaaay less sleep for me and I have been informed I'm already cranky.  (A base canard if you ask me.) FP has been on a science kick lately, which I want to wholeheartedly encourage.   So these next few posts should be about whatever fun, sciency (shut up, that is too a word) things I can find.  Unless some one with medical degree steps on my last nerve or we get distracted by lightning bugs and squirrels or something.  Whatevs.  Here are the first three that seemed fun in no particular order.   

Sand Art- This one is awesome for kids with visual impairments as it stimulates sight and smell and touch.  It's a bit messy so if you're particular, do it in the yard where you can hose the kids down afterwards.
you will need: clean sand, various kool-aid packets, paper, glue, dishes. (one for each color of sand.)
1) Mix a few cups of sand with each packet of kool-aid to create the different colors. (a tiny bit of water may help.)
2) Let the kids draw (or just go straight to spreading glue) on the paper then spread the glue in a thin layer on the drawings.
3) Use the sand to "color" the pictures.

Magnet Kites- This is a great introduction to magnets.  As they play, you can explain about magnetic attraction and gravity.  (Can't remember? Google it!  Now you both have gained some brain stim.  You're welcome.)
you will need: paper, paperclips, string,  a good strong magnet, tape.
1) Cut a three inch kite shape (or two or three) out of paper.  Tape the string (about 9 inches)to one end.  Add a paper clip to the other end.
2) Tape the end of the string to a table or flat surface.
3)Use the magnet to lift the kite into the air.  Once the kite is fully extended, slowly separate the magnet from the paper clip (have the kid hold the kite at first)  The kids will be amazed when the kite continues to fly even after they let go.  And you will look  like Mr Wizard.

 Homegrown friends (stop making stoner jokes, big people.)  These are like chia pets but waaay cheaper and infinitely more charming.  These might even make cute gifts. 
you will need:  old pantyhose (knee highs would work well), potting soil, grass seed  googly eyes (or buttons) glue, and a dish or pot to hold them when finished.
1)Place a good handful of grass seed in the bottom of the pantyhose (the foot part).
2) Fill with enough dirt to make a softball-ish  sized ball.  Tie the end off.  Place in pot so seeds are on top, knot is in base of pot. 
3)Glue/pin eyes (or buttons) to make face. 
4)Water occasionally.  In few weeks this will be totes adorable.

                  Hope this helps to while away the time.  If you need us, just follow the sounds of Madonna or Voltaire or whichever melody Feisty Pants decides the world needs at three am.

 

 

Wednesday, August 5, 2015

Hey all, do me a favor?

                 So my friend, Lovely Pants, who is truly lovely, sent me an invite to a Facebook page organized by a mom trying to pull off a fabulous surprise for her son's sixteenth birthday.  Lovely Pants took time out of what must be a crazy week to do so by the way.  Her daughter is getting married in less than two weeks.   (I told you she was lovely.)  So, if she can make time in the middle of what must be a frenzy of last minute preparation and guests and what not, then I can surely stop bitching about everything in the medical profession long enough to do some good too.  
                 To that end, will you all do me a solid?  Please?  There is a kid named Dylan D.  living in Rochester whose mom is trying to get a birthday card drive going for him.  He is an Aspergers kid who had some problems with bullying. (Sigh.... I get kids do not  come with morals factory installed, but you think we adults would better at the after market ethics installation.)  Dylan is now home schooled but perhaps a bit lonely.  All he wanted for his birthday last year was some cards in the mail.  Which never came (He did receive a card, but not in the mail.).  So this birthday, his mom is out-classing us all and pulling out all the stops to do so.  Here's how you can help.  Please buy a card suitable for a sixteen year old boy (nothing risque please, crazy friends, you know who I am talking to.) Add a few kind words. Pop it in the mail before October 27.  (Early is ok, the mom is clever and made arrangements)  He'll be thrilled.  His mom will have a full heart. (A heart on???? Sorry, I had to.  My bad.)  You will have a lovely warm feeling worth being a little smug over.  Win for everybody. Here's the name and address. Don't worry about the last name only being an initial. His mom made arrangements for that too.  (I did say she was clever.)  And, Dylan, if you are ever seeing this, I hope your birthday turns to be as amazing as you and your mom.

                           Please send a card to:

       Dylan D.
       P.O. Box 16797
       Rochester, NY 14616

 

Sunday, July 26, 2015

Howling at the Moon

           So, originally I wanted to make this about Feisty Pants' fabulous day off  (eat your heart out Ferris) wherein she went to the movies and shopping and had a blast.  (Shout out to the amazing adults who made that happen!)  Then I thought I would add a few more ideas of how to slay the beast of brain drain.  (I am still researching ideas and will come back to that, promise.)  But then I saw something that struck a nerve and now THAT is what I want this post to be about.  I saw two somethings actually, and they both pissed me off to no end.  I want to talk about the obnoxious, pervasive, hideous, soft bigotry towards the disabled.
          The first something was a post on Facebook by a family that bills itself as the Hartley Hooligans.  They are a family with two daughters with MSG and the Mom's posts are funny and awesome and bad-ass.  If you don't follow them, you should.  The latest was a post on the occasion of her eldest daughter's fourteenth birthday in which she basically told the doctor who dismissed her then infant daughter's potential and life to go suck it.  I literally applauded the post. (She couldn't hear me but so what.) What then followed in the comments was other parents of feisty ones discussing their experiences of doctors who gently said horrible, dickish things for their own good.  I even added mine.  We had reports of doctors who advised "letting nature take its course"  and "concentrate on healthy babies".  I can personally attest to "it is acceptable to turn off the life support if you wish"  and (my fave) "You need to know you are probably taking her home to die".  Oh, and let's not forget "I am sure you are ok with anything that would stunt her growth" (uhhhh, no I am not ok with that. Jerk.)   Here's a hint, dear physicians.  You think you are being careful and non-judgmental.  You are not.  THESE ARE DICK MOVES.   WHAT YOU ARE REALLY SAYING IS THAT THESE DISABLED HUMAN BEINGS ARE NOT WORTH THE EXTRA MEASURES OF EXPENSIVE CARE. If ANY human is not worth it than NO human is worth it.  How dare you say otherwise, especially when it comes to our disabled children?!?  Whom, exactly, are you saving the expensive care for, hmmmmmm?????  Someone who has something to offer other people? Why do you assume my child does not have such potential????  Who the eff are you to make that judgement anyway???  And, might I ask, why oh why would you feel the need to give us dire predictions?  Do you think we are foolish and not capable of understanding the seriousness of the situation?  Or is it just that we are not freaking out and wringing our hands so you don't think we are truly scared enough?  Must we be a voice for your fears to make YOU feel better somehow?  
             The second thing that made  me grow fangs and howl at the moon this week was some network's new show Tut.  (About Tutankhamen) I am sure it's simply a soap opera, probably riddled with typical fallacies (cue the old canard of artistic license).  But here's the thing, in the ads he looks pretty and physically perfect.  Tut wasn't.  Tut was disabled.  He had a genetic condition causing a club foot and more than likely an intellectual disability.  He had to walk with a cane.  Dozens were found in his tomb. He would have had serious back problems.  And yet he ruled.   And so did Julius Caesar, who had a seizure disorder.  Michelangelo, Isaac Newton and  (probably) Thomas Jefferson all had Aspergers.  Nicola Tesla had severe OCD.  Homer was blind.  Helen Keller was deaf and blind.  Franklin Roosevelt was paraplegic.  Lord Byron had a club foot. John Nash had schizophrenia. John Milton was blind.  Monet's fading eyesight made his paintings more unique as he aged. Beethoven wrote the Ode to Joy as he went deaf. I could do this all day but I bet you get my point.  Every single one of these people made amazing contributions to art, history, science, literature  in spite of, or even BECAUSE of their disabilities.   And yet we whitewash disability right out of our history.  WHY?  We do it because then we can look at the disabled and dismiss them with pity and fool ourselves into thinking that that is NOT prejudice.  That it's ok to not make the efforts needed educationally, medically, financially to include them in society. That we are not total dicks for doing so.   We cripple our own souls so we can not look at other people as equals because they are disabled. This is evil.  As a species, we should hang our heads in shame.

             

Saturday, July 18, 2015

Staving off the beast of boredom

      Feisty Pants is off at the movies and doing some shopping. Having a blast without those annoying parents to tell her what to do, or worse, what NOT to do.  I hope she is having a great time and not doing heroin or picking up fast boys or doing tequila shots.  You never know, she went with her teacher and nurse for the outing. (A dedicated special ed teacher and a private duty nurse?  Sounds like a wild bunch to me.)  But I thought I would take advantage of the relative quiet and look up some things for her to do when the next dead zone hits.  The next one at the end of the summer session of school is three weeks this year. Usually Feisty Pants is bored stiff by the end of the fourth day.  By the end of two weeks she is certain we are trying to kill her with boredom.   Joyously, I have three weeks to fill.
                   So, to that end these next couple of posts or so will be about things you can do to hopefully entertain and provide mental stimulation to any bored kid.   I haven't managed to get these organized by age or activity this time.  Mostly because it's hot and we are all cranky.  Besides rules are for squares and mean old fart parents or so says FP.  So, eff it, here they are, in no particular order.  And if you have any better ones, show off by sharing them in the comments.  You have nothing to lose but your kid's eyerolls and whines of "but there's nothing to do."

Birdseed ornaments: You will need:a loaf of thick stale bread (think day old french bread), peanut butter, birdseed, twine. (optional: cookie cutters)
To make: Cut one inch think slices of bread. (You could be all fancy schmancy and use the cookie cutter to shape them)  Spread with peanut butter.  Sprinkle very liberally with birdseed.  Chill until firm.  Flip over and repeat on back side.  Hang with twine from trees.

Easy paper lantern- you can do these two ways, simply make the paper lantern and use as a decoration OR go all the way and make them actually light up.  You will want adult (or at least, older kids) to supervise that.
You will need: Construction paper or thick gift wrap about the same size, glue, scissors.  (Stop there if you want the really easy version) empty tuna or cat food cans (Need I say clean?) battery powered tea lights.
To make: Fold the paper in half length wise and crease.  While folded, cut slits from the center to about an inch from the edge.  Make the slits about an inch apart. Unfold paper and glue short end together, forming a tube.  Glue the bottom of  the tube to the can.  (So the can forms the bottom of the lantern)   Glue another strip of paper (1/2 inch wide by six inches long) to the top for a handle.  Drop in a tea light to light.

Summer snow- This one is messy so of course the kids will like it.
You will need: Baking soda, shaving cream. BIG bowl or bucket.
To make: Empty can of shaving cream into bowl.  Add about 2 cups of baking soda.  Stir in slowly until you get a consistency you like.  Take outside and annoy the neighborhood with snowballs.  (You're welcome neighbors! )

Saturday, July 11, 2015

Back to Life

         There's an old Soul II Soul song that starts out, "Back to life, back to reality..."  It kind of sets the tone for the week.  Feisty Pants' summer session of school has started.  The therapies are back up and running.  And although we are busy, we are still getting more sleep than we did during the break.  And even though it is frigging summer (ick ick ick) and way too summery for my liking, things seem to be settling back into our school routine rather nicely.
          Feisty Pants is now sleeping better (THANK YOU THERAPY).  Complaining less of how boring and awful her parents are.  There are TWO cute boys in her class this summer.  That's not even counting her "bus boyfriend".   ('Cause when you're that adorable, that's how you roll.)  She even has plans to go see the Minions movie without her pia parents - the hallmark of a truly entertaining outing.  "'Out you, Mom, 'out YOU!"  meaning without me.  As I am the most awful, smelly albatross of a parent to ever hang around making my children's lives a misery.  (I am incorrigible that way.)  She is even showing off new verbal skills this week.   If, of course, you take a new swear word as a verbal skill.  And I am.  We did explain swear words are for speech therapists because they appreciate the effort it takes but since she only swore at her father, and she was repeating a word he had just said, I let it slide.  (Only giving her a quarter for making me laugh counts as letting it slide, right?)
          So far, the only minor hiccup was that she got sent home early on Thursday due to a power outage at her school.   Which she liked in theory.   Until she realized it meant being home with me.  She was little disappointed though, when the NYSEG guys said a transformer blew and she missed it.   I mean really, what's the point of something blowing if you don't get to watch it blow?  Feisty Pants said it was verrrrrryyyyy borrrrring.  She did not get to see anything blow up at all. Just a bunch of guys working.  They weren't even cute in her book, just old.  The summer session is supposed to be the fun one.  What the heck.  They could at least let her see something blow up.

           Ahh well, but now it's Saturday.  And she hasn't complained yet today of terminal ennui.  We even found Hocus Pocus on tv, so she is happily ensconced in witches and zombies.  (My kids due tend to skew more towards Wednesday Addams than Barbie.) So I get to have five minutes to try to finish this.  Maybe there is something to be said for simply enjoying life on a lazy July afternoon.