Frankenparty The Aftermath

What a wicked ride that was.  Late last night Mark and I briefly stood outside on the porch in awe of the movement of the wind through the trees.  We have no damage and no flooding in the basement.  The neighbors to the right have a few downed tree limbs and destroyed patio furniture.  The neighbors to the left have a piece of fence down.  Not bad.  Not bad at all.

Our generator is still en route and we have been out of power since about 11:30 EST last night.  Fortunately we have a gas stove, so heating meals and making coffee in a sauce pan is possible.  We are adding bagged ice to the fridge and so far that is working well.  I had frozen dozens of ziplock freezer bags full of water in the freezer, which is also helping.  We have coolers and ice.

It is a day of bundling up, playing games, napping, and little contact with the outside world.  We have a decorative gel fireplace (picture from Overstock.com below) which uses canisters, like what you heat food in chafing dishes.  In addition to the light, it gives off a nice amount of heat.  I haven’t seen the weather reports on tv, obviously.  Though we can charge our phones with the weather radio, we’ve kept the cell phone use to a bare minimum.

This evening we are spending time at the Kerstings for dinner, recharging batteries, hot showers, and baking cupcakes for Sophie’s Halloween party tomorrow, which is how I can post this update.  School is open tomorrow but there is no word yet on the power.  They will be happier at school anyway than in the chilly dim house.  Plus, Sandy hasn’t ruined Halloween, which would have been unforgiveable.It could have been worse, so we are grateful, but it will sure be nice to have the power back on.

Frankenparty

By no stretch of the imagination am I making light of Hurricane Sandy, but I am going to make the absolute best of a bad situation.  Due to the hybrid nature of the storm baring down on us, this monstrous vortex has been nicknamed Frankenstorm.  As such, dealing with it the best way we know how is our #Frankenparty.
I first learned of the coming storm while holding Sophie’s hand in the ER on Thursday night.  We were sent home after her IV of fluids did the trick but I woke up at 4am, unable to sleep.  I decided to get the hurricane preparation shopping out of the way.  At 4:30am I drove to the all night store in record time as I hit every green light.  The shelves were freshly stocked, there were plenty of staff, and no other customers.  Unlike my shopping experience with Hurricane Irene, I had no trouble stocking up on D batteries, bottled water, bread, and milk.  The added bonus of not having kids in tow made this a breeze of a trip.  At lunch the next day, Sophie surprised me by eating mac-n-cheese, which she hasn’t eaten for a few years and is a huge deal.  Afterwards, we had a living room dance party, cuz this is how we do it.


On Saturday, we had a babysitter so Mark and I could walk up to the Villanova Homecoming football game.  Rather than go out to dinner as planned, after the game we came home to continue prepping the house.  My nerves were on edge which meant that I focused this energy on cleaning until 1am.  I didn’t sleep long and was back up early to keep cleaning.  Don’t judge.  It’s how I deal with stress and frankly, the house looks great.
Sunday was a wonderful day.  Our dear friends the Kersting family came over and we had hot apple cider, baked pumpkin bread, did crafts, the kids painted little pumpkins and the adults carved the big ones (Obama’s logo, a Creeper from Minecraft, & Pato from Pocoyo).  We watched the Great Pumpkin, Charlie Brown, and the adults enjoyed seasonal beer.  When it was time to eat, we ordered in.  When it was time to nap, the kids actually napped (holy cow)!  Mark and Ras battened down the hatches by covering the scooter, grill, garbage and recycling cans with a nailed/staked down tarp (pray it holds).
After our friends left, Mark prepped our unfinished basement, which we only use as storage.  We expect flooding, unfortunately, but as of 8pm Monday night, we are still dry (knock on wood).  Our house is made of brick and is nearly a hundred years old.  She is a solid fortress and we feel very safe here.
Mark and the girls crashed but Alexander and I couldn’t sleep so at midnight, we baked a batch of chocolate chip cookies.  He measured, I mixed, we laughed and licked the beaters.  We talked and had the best time.  You really can’t beat warm cookies and milk with your child at 1 am.  As I tucked him into bed he gave me the sweetest smile and hug and said he would never forget this.
The entire region has shut down today and Tuesday, including Mark’s work, the public schools, mass transit, roads, bridges etc.  So, we slept in, stayed in our jammies, and I sipped hot coffee today until noon.  I worked from home, Mark graded mid-term papers, and the kids played.  There were bubble baths and naps in the afternoon while the roast, carrots, onions, and garlic potatoes slowly cooked in the oven, smelling like Heaven.  The power has flickered a few times but hasn’t gone completely out for more than a few minutes.
I ventured out in the afternoon for bags of ice for the coolers, just in case.  The closest place just happened to be a beer store, (ahem).  It wasn’t bad out, just wet and windy.  The emergency weather solar/USB/hand crank powered radio/flashlight/cell phone charger that I ordered was delivered and works great but the generator I bought hasn’t made it yet.  It will be wonderful if we are able to keep the power through Sandy, but knowing that we will have a generator for future storms was well worth it. 
Halloween is Wednesday and it’s too soon to tell if there will be school (or the Halloween parade & class parties) or trick or treating.  Worst case scenario, the kids can trick or treat from room to room at home.  We are prepared for the worst and hoping for the best.  The eye of the storm is over us right now and all is calm, except for Helena, who refuses to wear pants and is demanding to wear her bicycle helmet.

A Friend You Haven’t Met Yet

Sophie was sent home from school early on Monday.  She had put her head down at lunch and cried, refusing to eat.  She had a low grade fever, was not herself, and most strangely was unable to walk normally.  After a nap at home, Sophie was still unable to walk or bare weight without pain, so I took her to her pediatrician.  He sent us to the ER for x-rays and blood work.  The diagnosis was that a virus had settled into her right hip joint, causing inflammation and pain.

Skip ahead a few days.  She has not been able to shake her fever, is still in pain, and has begun to refuse food and drink.  So on day 4 of this illness, we returned to the pediatrician who sent us back to the ER for more testing and an IV of fluid.

We’ve been here for hours and are finally waiting for discharge.  Her blood work looks good.  The rapid strep test was negative, and the IV of fluid perked her right up.  She’s eating goldfish crackers and drinking a little chocolate milk.  They put in a catheter to test for a UTI which was also negative.  She was just dehydrated, which we knew.

Mark and I are here while Alexander and Helena have a party with our friends.  They think it’s a party anyway.  Knowing that we would end up in the ER, I packed plenty of books, toys, and the iPad to keep Sophie occupied.  I brought my laptop and have gotten a bit of work done and Mark is grading papers.  You do what you need to do to pass the time.

While skimming fb, I came across this video by John Franklin Stephens, who goes by Frank.  He’s a hero of ours and you can find another letter he wrote on the sidebar of this blog.  Frank has a way with words.  He speaks eloquently as a self advocate who will not back down to bullies who use hate speech to belittle people with intellectual disabilities.  He does so in a way that is inspiring, powerful, thought provoking, and compassionate, even to those who disregard him.  Though I won’t give the person he is speaking to a moment of my time, I am honored to share Frank’s words as he educates us about the kind of people we should all strive to be.

Thank you Frank for standing up for yourself, for Sophie and all of our friends in this beautiful community.  And with that, this family is busting out of this joint!

The Great Pumpkin

To get us excited for our visit to the pumpkin patch, we watched the Great Pumpkin Charlie Brown for the first time this year and in the morning we met our friends to drink in autumn’s splendor. 

The family farm is a lovely place complete with a hay bale maze, corn maze, pumpkin patch, and tractor pulled hayride.

While we were there Sophie found some of her friends from kindergarten and the 1st grade and they ran off through the maze laughing and chasing each other.  One of the moms stopped to introduce herself and her family.  She had heard about the letter we sent home on the first day of school as her daughter is in a different kindergarten class.  This was the letter that introduced Sophie to her peers and to talk about Down syndrome (click HERE for the letter).  She shared that the parents have all been talking about the letter and love it.  She had gotten a copy because she wanted to show it to her own mother.  It meant so much to them because she has a brother with Down syndrome.  I hope I never get used to these wonderful surprises and little threads that link us all together.

Helena may be the size of a 5 year old, but she really is 3.  She kept getting stuck in this dead end of the maze and would get so mad.  It was hard not to chuckle.

As an aside, would you look at the bone structure on this gorgeous girl? We are in big trouble when she gets older. We could not have asked for a more picturesque day.

Sharing the fun with the K family made it all the more special.  Plus, thanks to Klara who snuggled me up, I got my baby fix, which will hold me for a while.

Sophie’s shirt says, Don’t Mess With Perfection.  Don’t you agree?

We finished the day with naps, a little football and my favorite tv show The Walking Dead (after the kids went to bed of course).  So much of our lives are hectic and stressful.  Days like this fill us up.

Inclusion and the Dignity of Risk, Belle of the Ball, Part 4

continued from Part 3, HERE
Based on the events of last evening, I decided to skip ahead a bit in the telling of Sophie’s inclusion experience in kindergarten.  This is just too good to wait on a virtual shelf.
As with most aspects of her story, it cannot be told without including the whole family and now, her friends.  Her little circle is growing larger by the day.  In the end, inclusion is not just about how Sophie will be educated in school.  It is about her self identity and sense of belonging in this world.  It is about being the best that she can be and being accepted as a valued member of the community.
In this recent post about Making October, I wrote about the Halloween costumes that I was making for the kids this year.  Helena is a wolf, Sophie is a cat, and Alexander is Herobrine, a character in the computer game Minecraft.  My deadline was 6pm on Friday so I had less than a week to pull them together.  The elementary school PTO hosts a Halloween Spooktacular every year.  It is in addition to the traditional costume parade and classroom parties that take place on Halloween.  They pack the gym with Halloween crafts, games, music, and pizza.  The costume contest is done by grade and there are between 3-4 classes per grade.
Sophie had taken a little nap between school and the party.  When we woke her up, she was very upset.  I had been able to get Alexander and Helena ready with no trouble.  I could barely get her costume on and adding a pink nose and whiskers was not happening.
Everything changed the moment we got to school.  It took us 10 minutes to make it from the hallway to the gym as Sophie’s friends and some of the parents stopped to chat and admire the  kids’ costumes.  Once inside, it was mass chaos.  The kids preferred to mingle with their peers on the stage over doing crafts and games.  It was hot in that gym, especially for those in costume.  Grinning from ear to ear we watched as not only kindergartners but older kids came up to Sophie, excited to see her.  It was a real love fest filled with dozens of hugs.
The time came for the costume contest and Sophie lined up with her best buds.  Alexander was a real ham, posing and showing off the diamond sword his daddy had made for him.  By then his makeup had been sufficiently sweated off, but he worked it.
After each grade had their turn on stage and the judges made their decision, they were ready to announce the winners.  By then we had made our way across the gym to enjoy some cold chocolate milk when they announced that the prize for best costume for kindergarten went to the little gray mouse.  Remember, Sophie was a cat, a little gray cat, not a mouse, so I wasn’t sure they were talking about her.  Still, I lifted her up to my right shoulder over the crowd, as if to say, “this little gray mouse?  Is this who you mean?”  She had won and as it was impossible to maneuver through the crowd on her own, I kept Sophie on my shoulder as we made our way to the stage.  I’m not going to lie, it was a bit of an out of body moment for me.
We got to the stage and they took her name.  I didn’t care to correct them about the mouse/cat thing as I was too busy grinning and snapping pictures.  I just watched as Sophie stood proudly, holding her prize of popcorn, candy, and a movie pass while her friends cheered, “Yay Sophie!”  Alexander quickly got over not winning against the awesome Lego man of the 2nd grade and was truly happy for his baby sister.  We headed home to enjoy Sophie’s prize. 
Her daddy said it best, not only because of the contest, but how fully her peers, their parents, and even the older kids have embraced her, our little Sophie was the belle of the ball.
to be continued…

October Down syndrome

Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!

In Search of Black Sheep

Back in the days before blogging when we were a family of 3, I sent a mass email to my friends and family.  At the time Alexander had just turned 1 and we were living in Madison, WI.  We miss many things about Madtown, and the mega grocery and liquor store Woodman’s is at the top of the list.  Don’t judge, especially if you’ve never been there.  Oh how we took for granted the ease of purchasing fresh cheese curds, brat burgers, New Glarus Spotted Cow, and Wollershime (everything).

Thanks to a display in the wine section, the search for black sheep began.

(See email below)

March 29, 2006

Dear Friends,

Parents will do just about anything for their kids. Here’s the story. In our grocery store (uh, I mean the wine section) is a stuffed animal black sheep. He is the mascot for Le Grand Noir wine and has been on display for quite some time. Apparently le grand noir is French slang meaning Black Sheep. In any case, my son has fallen in love with this black sheep. We make frequent visits to him, even when I’m not buying wine. (how often is that?) One might think that with the nursery rhyme baa baa black sheep that it shouldn’t be too difficult to find a stuffed animal black sheep to buy, especially with the internet. Folks, it doesn’t exist. The closest I have been able to find is a little baby black sheep (always sold out), and a scary Mama black sheep (who’s not really black) with a horrid face. All others are either gray, or white. The grocery store isn’t willing to sell their black sheep (yes I asked) and I can’t find the winery contact information to inquire directly to them. I’m asking, admittedly with embarrassment, for you all to keep your eyes open for a stuffed animal black sheep that resembles the attached photo. Yes, I did take a photo of him and looked like a dork, I’m sure.

Thanks everyone,

---Jen (and Alexander)

Nowadays there are more options for finding a black sheep stuffed animal, but back then, I had friends and family all over the country on a search.  One day, I went to Woodman’s and a staff member pulled me aside.  On his own he had ordered me another black sheep through the distributer and I could take him home!

Needless to say, I was stunned and Alexander loved that sheep.  As time went on, black sheep fell out of favor, as most toys eventually do and he went into storage.  Many times through the years I nearly got rid of him.  He takes up a lot of space and is scary looking, but I couldn’t do it.  He held too much of my first born’s love.

A few weeks ago as I dragged out the Halloween decorations, I spotted black sheep and thought, hmm, maybe I could use him.  With that large face and spooky eyes, maybe I could put him on the porch or have him peering out of a window, so I brought him up from the basement.

Alexander spotted him and swooped him into his arms like a long lost friend.  He hadn’t seen him in years and did not understand why he was so happy to see this large, black sheep.  Yet, he lugged “Sheepy” (his new nickname) around for days and he was added to the special stuffed animal friends who help him sleep at night.

Now, Alexander likes (age appropriate) scary things, as do I, but they still bother him from time to time.  Once in a while he gets spooked in his bedroom at night and needs to be helped back to bed.  If he has a particularly bad dream, Mark usually sleeps in his bed so Alexander can snuggle up with me.

On one such night, Mark was putting the girls to bed and I was still up, downstairs.  I found this note on my pillow once I finally turned in, though by then Alexander was out. 

He wrote this while frightened and in the dark, too scared to come find me.

It happened again last night.  Mark was putting the girls to bed and I had already tucked him in.  I heard the unmistakable sound of little feet trying their best to sneak down the stairs.

“Alexander?”  I called.  “Why are you awake?”  He got spooked, he said, so I took him back to bed.  Once there I spotted Sheepy on the floor, that big scary looking creature.

I told my son that Sheepy was there to protect him while he slept and would keep the nightmares away.  Alexander nodded with the understanding and trust that we have as children about such things. He hugged Sheepy to his side and we had no more trouble last night.

This morning I snuck in to see if Sheepy had been booted out of bed while he slept.

Yes, I know this looks like the scene from The Godfather that coined the phrase, “going to the mattresses.”  Yet Sheepy is here for Alexander, not to scare him.  He is his sentinel.

Six years ago I went in search of black sheep and we will never get rid of this protector of dreams.

Making October

October. It is the designated awareness month for Down syndrome, domestic violence, and breast cancer which all have a personal significance to our family. It offers up the fall harvest, the heart of football season, Buddy Walks, turning leaves, crisp air, apple cider, pumpkin bread, and Oktoberfest. It heralds the return of kids in footie pajamas, warm sweaters, and thick, colorful tights. Yet the best thing about October is All Hallows Eve. My husband does not share my passion for Halloween, but I hope to be passing it on to my children. He hates scary shows but that doesn’t stop me from watching marathons by myself.  I tried to resist dragging out the decorations until October 1^st, but Alexander asked for them, so up they went during the last weekend of September while watching reruns of best zombie show ever, The Walking Dead.
Every year I add a few pieces to the collection. We’ll never be as awesome as this house nearby, but I try.  This year I found a set of 4 silver jack-o-lantern pails at the thrift store, the light up ghost above, the haunted house, long legged spider and the felt banner below.
The blue jar on the gel fireplace above the banner is the new good behavior jar.  The kids get a cotton ball when they behave and lose one when they are naughty.  It is empty here as they filled it this past weekend, so we took them to the most amazing harvest party, ever.  But I’m getting ahead of myself.
Sometimes the kids and I make the decorations, such as these milk carton haunted houses (see original post HERE).  Two years ago Alexander wanted to be a ghost, so we made his costume (see original post HERE).  This year we’ve decided to make the costumes again.  Alexander is currently into the computer game Minecraft.  He wants to go as the scary character Herobrine.  Helena decided to be a wolf, which she tells me regularly while howling, and Sophie will be a kitty.
Herobrine, like all things in Minecraft, is made of blocks of color that look like pixels.  Though the photo above doesn’t show the color of the clothes very well, they actually match pretty closely.  I bought nude material to make long sleeves, gray felt to cover his shoes, and card stock to make the sword (glued to card board).  To pixelate the shirt and pants, I’m going to try and use fabric spray paint.  I plan to section off blocks using duct tape to mark the areas that I will paint and pray it will look good.  For his face, I will paint on the facial hair and white around his eyes.
For the wolf and kitty I bought a set of hoodies and leggings, black for Helena and gray for Sophie.  The wolf fur is black and brown.  The kitty will be mostly gray, but I also have some white as well.  I’m flying by the seat of my pants with these as I have no pattern.  I think I will cut the fur in the shape of the sweatshirt and hand stitch it onto the sweatshirt.  I’m not sure if I should do full sleeves, or just patches.  If I have time, I’ll cover the sweatshirt hoods and try and make the furry ears stand up with pipe cleaners.  I really don’t know how much I should cover their legs.  I will make them each a tail and stitch a patch of fur to their gloves.  I’ll make felt shoe wraps and stitch some fur on there as well.  A little face paint should finish up the look.  If anyone has words of advice or ideas, please let me know.
Now back to that amazing party.  The kids filled the good behavior jar just in time for a fall harvest party, so we decided that would be their reward.  I met Chris through the C2P2-EI training and then his wife Kim and their gorgeous children.  Kim’s parents throw this bash every October and man oh man do they know how to do it up.  On their property they have goats, ducks, alpacas, and miniature horses.  The party took place mostly outside complete with a DJ running a dance party on the drive way, a fantastic spread of food, open bar, and a kitchen full of desserts (which Helena somehow found right away).  Behind the house they had turned the trails into haunted trails.  Each section had a different theme, such as the Civil War.  You could walk the trails or take a golf cart to explore them.
Alexander made a new friend and I enjoyed catching up with Chris and Kim.  Helena stuck by my side and Sophie boogied down on the dance floor with Mark to the Monster Mash and Gangnam Style.  The place was packed with the nicest people you ever want to meet and I got a kick out of seeing all the older gents with their tweed Irish flat caps.  I really want one of my own.  (Cap, not older gent, that is).

The school is having a Halloween party and costume contest on Friday, so I need to get to those costumes.  Please send good vibes that I get them done in time!