In which Feisty Pants is bored bored bored

                 Well now, we are well into our longer summer break.  Three weeks this year instead of two, and Feisty Pants is kind of done with it.  Sunshine is boring.  Rain is boring.  TV has gotten boring.  (Not enough spooky yet.)  Walks are now boring.  Goo is very boring.  I am the avatar of boring.  Hippie Pants works all the time so she is really boring.  And Dinky Pants just chases Cheweverything Pants around and that has gotten boring too. The only thing that is not yet boring are old videos from the eighties.  Apparently, the Beastie Boys are awesome.  And I am a liar liar pants on fire when I say I was a fan of them when I was a teen because I have never ever been that interesting. EVER.  Who am I trying to kid here?  I was born old and boring and  Feisty Pants is not fooled one bit by my lying shenanigans.
                    So, in order to try desperately to entertain the littlest rebel in the house I am back to scouring the interwebs for something educational and fun in order to provide at least enough brain stim to keep her from singing opera at three am. I have gotten desperate enough to let her sing but until you have heard a kid  with CP sing on both the exhale AND the inhale you have not really understood opera. The neighbors don't seem to understand opera at all at three am and want to know why we are strangling cats.  It gets a wee bit awkward.  To that end, here are three new activities I hope help to keep your feisty ones from breaking into arias in the wee hours of the morning.

1) Pumpkin cake (SUPER EASY)- this one has been making the rounds of FB as of late.  It looked easy so we tried it.  Feisty Pants gives it two thumbs up.

You will need- cake mix (yellow is probably better), 15 oz can of pumpkin.  That's it. 
     1) Mix the pumpkin into the cake mix  . Batter will be thick. 
     2) Spread in a greased  9x12 cake pan. Bake at 350 for about 35 minutes. 
     We sprinkled cinnamon and allspice on top because pumpkin SPICE dammit.  You might want a frosting.  (We didn't bother.)   

2) Bubble blowers- you will need some plastic soda  or water bottles, duct tape , stickers (optional), a large dish or pie tin, bubble liquid.  

     1) Have a grown up cut a straight line cut about halfway down the water bottle.  You are basically cutting the bottom half of the bottle off. (recycle or reuse the bottoms but keep the tops) 
     2) Wrap a piece of duct tape around the edge of the cut so it is not sharp.  The, kids can then decorate the bottle more duct tape or stickers or what have you.
     3)Pour bubble liquid in the dish.  Place the large opening into the liquid.  The kids can blow bubbles by blowing on the spout.  Repeat as necessary until fun ensues.

 3) Carbon dioxide balloons- you will need balloons, water/soda bottles, an ounce of water per bottle, a tsp of baking soda per bottle, lemon juice (or vinegar) and a straw. 

     1) Stretch the balloons out so they will inflate easier.  
     2) Add the water to the empty bottle, add the baking soda and stir with straw until dissolved. 
     3) Add lemon juice (or vinegar) and quickly cap bottle with balloon.           

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.        

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.

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.

 

 

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