Happy New Year...What The What?

There are two stories making the rounds this New Year's Eve that have me shaking my head.  One is tragic and the other is just...silly.

The first one is the story of a two year old that shot and killed his mother in a Utah Walmart.  Horrifying.  So many lives ruined in a second.  It raises so many questions:  Why was the gun in her purse?  Why was the kid left alone with the gun and purse?  How did his two year old fingers manage to pull the trigger?  What was she so afraid of in that little podunk town that she felt she needed to be armed to go to Walmart?  Did she get the gun for Christmas?

See the story here.

I don't want to get into a gun debate.  I really don't.  My husband is a former Marine.  He has massive respect for what guns and more importantly, bullets, can do.  We don't have a gun in the house, but if and when we move to the country (which we are thinking about in the future), my husband has already said that he would want a rifle; nothing crazy, just something for protection in a remote area where the police response time is decidedly slower than it is in the suburbs.  I know that he will be responsible with it.  He is that kind of guy.  I am no fan of guns myself, but I have no problem with responsible gun owners.  Where "responsible" becomes "irresponsible" becomes a bit more blurry for me, but that is a discussion for another day.  

I have been reading the debates about this incident.  The most ridiculous arguments are being made by some who are bragging about how savvy their own two year old's are with guns.  They are saying things like "They know not to touch a gun, ever".  I even saw a guy compare his having guns and teaching his toddlers about them to electrical outlets.  "We teach them not to touch those!  This is the same thing!".  Really?

Not the same, not at all.  Yes, we teach our kids to stay away from hot pots and electrical outlets...and guns, and accidents still happen.  As much as we parents are on top of our little ones, we still need to use the bathroom from time to time, or answer the door, or check on another child, or make dinner, or, or...so many "ors" in life.  Two year old's (and five year old's and ten year old's and teenagers and young adults...) don't make the best decisions.  Sure, they may have been told a thousand times that running into the street after a ball is a no-no, but how many do it anyway?  The answer is:  ALL OF THEM.  At one time or another, every kid puts themselves in some kind of dangerous situation.  Hopefully, usually, there is an adult nearby to save them from themselves.

While I certainly hope that these parents of gun-savvy two year old's are correct; which I highly, highly doubt, (sorry, THEY ARE TWO!) what I hope more is that they never learn whether they were wrong.  I hope they never have to second guess their actions because of a tragedy.  I also fervently hope that they are more responsible than that mom in the Walmart.  However you feel about guns, I am fairly certain that we can agree that a loose, loaded handgun in a purse within reach of everyone around you, not just your kids, is a bad idea; really, horribly, sometimes tragically bad.

I am thinking about this family today and hoping that they can find some peace in the coming year.

The other story making the rounds is about...drumroll, please...Playdoh.  It seems that in an attempt to design a kid friendly, fake cake making set, the manufacturers made one part look like this 
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I mean, okay.  I see it.  The person that designed it is either totally incompetent or a total, toy making genius.  After all, it is getting attention.

What I don't get is how this ruined anyone's Christmas.  People are actually saying that.  "It ruined Christmas when our daughter opened this present!", they are saying, hands held to throats in horror.

Seriously?  In what world does this ruin anything?  Sure, it looks like a tiny penis.  My question is:  Who cares?  It's not a tiny penis.  It's a tiny, Playdoh part that happens to look a bit like a tiny penis.  

Penises do not ruin Christmas.  They just don't.  Parents who make a big deal over nothing, do.

Why these two stories together, you ask?  What does one have to do with the other?  The way I see it, with all the horrors in the world, including a two year old shooting and killing his mom, tiny plastic phalluses are the least of our worries; or at least, they should be.

Are we really that far gone as a society that we are so desensitized to violence that we shrug it off, but anything that even resembles a penis has to be blurred out for our viewing (like they did here)?  What does that say about us?  Penises, real, fake, purposeful or not, are not the problem.  Our twisted view of what is bad or wrong, is.

Christmas Post

I am sitting in my cosy little house, listening to Christmas music through the Roku.  Things sure have changed since I was a kid...even since my kids were born in the last 18 years.

First of all, Roku?  It sounds like a character in Pokemon; something else that did not exist when I was a kid.  Since I fired up the desktop, I have heard Tony Bennett, The Beach Boys, Idina Menzel and George Michael and I have not had to load my cd player and set it on "shuffle" (remember how cool that was?!?).  All I had to do was pick a Christmas station through my TV.  

Christmases when I was a kid have all become a tinsel-covered blur in my memory.  I remember fat, crazy looking trees at my maternal grandparents house (in sharp contrast to the perfectly shaped fake tree in my other grandparents home), bowls of nuts that you had to crack yourself and bodies; lots and lots of sweaty kids and overheated adults.  The oven and stove going all day long makes for an unpleasantly humid living room, especially when packed with dozens of relatives.

And I totally loved it!

Christmas was a day of many big meals and many stops.  Godawfully (for my parents) early present opening and Santa gift discovering (Santa did not wrap his presents in my childhood home and he still doesn't in my adult home.  That Santa wrapped other kid's gifts started nagging at my already suspicious mind somewhere around the age of six), brunch at my aunt's, super-early dinner (that we were always late for) at my great-aunt's, then, finally stuffed and crabby (if you were a parent) and excited (if you were me), we arrived at my maternal grandparents house.  It's not that the rest of the day wasn't fun; it's just that their house was the MOST fun.  It's where all my cousins and my grandmother's seventeen desserts were waiting for us.  I'm not kidding when I say seventeen.  There were years that I counted and if there were less than ten, my grandmother would be fretting that we might run out.

Adding to the heat and the mayhem, my grandfather would be blinding us all with his movie camera.  Those movies would get broken out on Easter, Thanksgiving, or a later Christmas when the merriment had died down.  I have so many memories of lying on the floor with my chin propped on my hands, surrounded by nearly everyone I loved, laughing at those old movies.

So much stayed the same and so much changed as I got older.  My teen-aged self did not appreciate the Christmas Eve service that took me away from my (totally super-fun) boyfriend's family party.  I did NOT want to get up early to see what Santa brought for my younger sister and brother.  All I wanted was a leather jacket, to sleep late and some freedom.

So many pictures of me smirking or rolling my eyes during these years.

When I moved away at twenty, I was not quite prepared for spending holidays without my relatives.  That first Thanksgiving was pretty sad.  My (different) boyfriend's family was wonderful and welcoming but their traditions were so different from the ones I had grown up with.  I learned pretty quickly that if I wanted any kind of taste of home, I would have to learn how to make it myself and then, it would never, ever taste how I remembered it.  
That year, I did go home for Christmas, but things had already changed in my absence.  I had only been gone for six or seven months, but I had a new cousin, my room was no longer mine and it was clear that being an adult at Christmas was not as fun as being a kid.  By the time New Year's day 1991 came around, I was more than ready to get back to L.A.

Those years were some of the best of my life so far, but the time between Thanksgiving and New Years was always very trying.  My new boyfriend (now husband!  :) ) and our friends became each other's family.  We made the best of things, probably partied a little too much and complained about the lack of holiday spirit that seemed to permeate L.A.

Now, we have our own family and for many years, Christmas has been fun again.  There is nothing like seeing your little ones light up when they see what Santa has left.  It is warm and wonderful and maybe not as chaotic and busy as the holidays of my youth, but it is still wonderful because we are together.  We have our own traditions.  I have learned that the old cliche "Home is where the heart is" is true.  My heart is here with my family and it is also with my extended family and all the friends that made my holidays of the past memorable.  Being away from them has its moments of sadness, but more, it fills me with joy that I have so much to be thankful for and so many people to miss.  It is a luxury to have had them in my life.

Now, I have my own teenagers who roll their eyes and sleep too late and occasionally, make it harder to be filled with Christmas cheer; but they also surprise me with their generosity and warmth towards each other and us.  Santa's bounty is somehow anti-climactic at 11 am, but it is no less appreciated.  The pressure of staying up until 2 am and getting up before prying little eyes is off.  We make each other laugh and they are old enough to reminisce with us.  Things have changed again and I am embracing it; living in the moment, cherishing this time.

So, to my family and friends near and far:  Much love today.  I will be thinking of you while embracing my dear husband and big boys.  

Merry Christmas!

This is Nothing Important

My dear husband and I were talking about dream "visits" the other day.  If you have had them, you know the kind I mean.  If not, they are the kind of dreams that feel as if you have spent time with someone that you love that has passed on.  I feel lucky that I have them, even though they usually always make me cry upon waking.

Occasionally, I have "place visits" in my dreams and these make me cry, too; mostly because I am usually dreaming of some wonderful destination that I am longing to be in; Paris, the pyramids in Mexico, or my grandparents' old house that has long since been demolished and turned into two family homes.  If I could time travel, I would go back to the brick front steps of that house or to huge swing in the backyard just to have another conversation with them.  God, I miss them every day.

This morning, I had a visit of another sort.  I woke up suddenly to the sound of crashing from the living room.  Since I have cats and am used to being awoken thus, I just figured I would survey the damage when I was good and ready (it was not the Christmas tree as I had feared, only some heavy cookbooks).  I managed to fall back to sleep almost instantly and immediately fell into a luscious visit with a 6'4 WWE wrestler.  It was the kind of dream that made me feel like I needed a mental shower upon waking; or a long soak in a hot bath for real.  It was a very nice dream.  It was so nice, in fact, that it made me feel guilty enough that I needed to write up this post; as a kind of confession.

I know I can't control my subconscious.  My rich fantasy life is as deeply embedded in my DNA as graying, mousy brown hair, blue eyes and irrational guilt.  They are all parts of me that I am learning to embrace.

Whatever it means and however it makes me feel, it was nice to wake up with a smile on my face, for once, on an otherwise dreary Monday.  Now, if you don't mind, I am going back to bed.

What Ifs

They really aren't helpful, are they?

We all have them.  

Mine range from the superficial "what if I were taller/thinner/better looking?" to questions about my path in life "what if I had moved to NYC instead of Los Angeles?" to "how would my life be different (better/worse) if I had never had kids?"

Yes, I have thought about that last one.  I'm not saying I wish I hadn't had my kids, because that is totally untrue.  Sure, there are moments when I look around my tiny, cluttered house and wish I was living in a loft in Paris...alone.  Who doesn't have these kind of daydreams?  (Angelina Jolie)  I'm saying that maybe I could have been thinner, traveled the world, made some more money, etc, etc, if I hadn't.  And maybe not.  Maybe I would be just as poor, chunky, travel deprived as I am now.  Who really knows?

It's a trade-off.  Okay, for some, it isn't (Hello, Angelina!), but for most, having kids means your life will be somewhat messier and you will be somewhat poorer.  For most parents it is a welcome trade-off.  Our kids enrich our lives in big and small ways every day.  My kids make me laugh, make me proud and make me yell in frustration, sometimes in the span of two minutes.  It's crazy and chaotic and I am happy and feel privileged to have such great kids.

I thought about these "what ifs" when I read an article about a mom with the headline "Mom of son with Down syndrome, 47, wishes she had had an abortion"...or something along those lines.  I refuse to post the article here, but a little Googling on your part will bring you to the story I am referring to.

I read it because a few of my friends had posted it, incredulous that this hateful piece was out there, complete with pictures of the family.  I repeat, pictures.

I am having a hard time wrapping my brain around putting your kid (he's an adult, but still her child) out there with the words "I wish he were never born" or actually, even worse, "I wish I had known what you would be so I could have aborted you" alongside a brand new family portrait.  I am no psychiatrist, but I think there is something deeply, fundamentally wrong with this person.

My first reaction was "how dare she?!"  Seriously, how dare she put her kid's name and picture out there with those words?!?  How dare she pose with him like they were a family?!?!  What purpose does this have?  We should feel sorry for her?  We should pity her?  What does she get out of this?  I have to wonder.  Maybe ( I think, definitely) she has some serious mental disorder.  Maybe she was duped into telling her sensationalized story by some unscrupulous editor (the source it comes from is known for it's outrageous stories and is no friend to the disability community).

Maybe.

I feel awful for her children.  She has another, older son who is missing from the latest family portrait; I would be very interested to hear what he has to say about all of this.  As for her younger son, I just feel so much sadness.  How awful to be the subject of so much loathing and misplaced anger and self-pity.  This woman has decided that her life would have been better without her younger son in it.  Meanwhile, she institutionalized him, so he really wasn't in it much, anyway, so I don't understand how he ruined her life.  She is blaming her crappy life on a child; a child that didn't ask for his issues, or choose his parents.  I have to believe that all any child really wants from their parents is to be loved and accepted.  Feeling like a disappointment is no way to go through life.

I feel sad for her, too, though it's a grudging feeling.  I really don't think she deserves my pity, but I do pity her.  I pity her crappy life.  I pity her inability to see the good and that it outweighs the bad.  I pity the small, sheltered space she must inhabit.  I pity the hatred she must feel for herself.

Yes, I am angry.  I am angry that she put this out there for expecting parents to see.  Will their fears be confirmed with this story?  I hope not.  I hope that they know that there are many, many more parents of kids with Down syndrome who feel pretty much the exact opposite of this one, myself included.

I am angry that people say she is a product of her generation.  That statement is a slap in the face to any parent that chose the hard road of keeping their kid home and fighting for inclusion in those earlier days.  She could have been a pioneer and she chose to be a coward.

Parenting is not for the timid.  At least, parenting well isn't.  

IEP Hell: The Neverending Headache

If you have been following along with the saga of my middle son's IEP's, you will know that we have had our ups and downs.  Mostly, luckily, thankfully, our experience with these meetings has been positive.  Until last year, with the start of his transition to high school, we never really had any kind of problem that we could not solve.

I am feeling that those days are behind us.  Even after a somewhat positive resolution to our last meeting before this school year started link here , we find ourselves baffled by school officials' lack of understanding of what inclusion looks like.

For instance, it does not look like a modified gym class for kids who are recovering from injuries.  Seriously, it does not.  

Charles is not injured.  Down syndrome is NOT a reason to be left out of a typical gym class.  In fact, Charles has ALWAYS been included in a typical gym class...until this year.  They decided (unbeknownst to me) that it would be better (their word was safer) to put Charles in a class where three or four other kids were getting therapy for injuries, rather than with the "general population". I am using that term with no irony whatsoever.

The gym teacher, who, all in all, seems like a very nice person who is trying to get a handle on how to include and teach Charles, is completely overwhelmed by this task.  I am not exactly sure why, but lack of understanding about what Down syndrome is and isn't seems to be a big piece of it.

I really didn't know what to say in the moment, because to me, it seems like a no-brainer that you would just assume he can do stuff until you see that he can't and then modify from there.  In the case of gym, the only modifications Charles needs are the ones that address his AAI What? and those are minor.  He can run, shoot hoops, play games, do bench press...pretty much everything that gym entails.  Can we just for a second assume that he can do stuff before we decide (with no evidence other than ***whispering*** psst, he has Down syndrome ) that he can't?

The problem "they" say is that Charles once left the gym without permission and they are worried that it would be hard to watch him in a large group setting, such as a regular gym class.  I get the need for safety, but let's break it down a bit.  He left this gym class/therapy and went to the next class on his schedule; most likely because he was TOTALLY BORED!  Who wants to sit around watching other people get therapy?  Further, they decided this BEFORE he started school! They had it in their heads that he could not handle the larger class and put him in this poor excuse for a gym class instead, without consulting me (I would have laughed at them) or even trying out the regular class first.  

Seriously?  

So, I told them that we needed to get him into a regular class, like YESTERDAY and they brought out the standard, tired argument of who was going to "watch" him, since, you know, they are so understaffed and the district won't give them another aide and yada, yada, yada...

I'm sorry, what?  

I pay taxes and ridiculous school fees for this "free" education and my kid will get what he needs; and if you put him in a class that actually has activities to keep him engaged, I am pretty sure that he won't feel the need to wander off to the math lab for some excitement.  Besides, my kid is LEGALLY entitled to receive a free, public education in the least restrictive environment; in this case, the high school that his brothers also attend, five blocks from our house.  This is not special treatment.  It is legally protected and socially just inclusion.

His case manager actually started complaining that there were so many kids "like mine" coming down the pike that they didn't know how they were going to handle it. And I said (trying to restrain myself from rolling my eyeballs out of my head) "Yes, you had better believe they are all coming!"  The insinuation was that "we" were the problem.  We.  Us pesky parents and our stupid kids.  

Are you freaking kidding me?!?!  These creative, bright individuals can't think of a way to revamp the system to accommodate children AT THEIR HOME SCHOOLS IN REGULAR CLASSES?!?!?  How about take 75% of the teachers and aides in the segregated classes and put them in the others?  Co-teaching?  Extra hands?  Spending less money busing kids to other schools also means more money for extra teachers.  For the other 25%, we can have some smaller classes for those kids that really, really need it and even those could go away in time, in my opinion.  We are finding out that our kids learn better together.  ALL our kids learn better together; no matter where they are on the continuum. Read This, this, and this.  

I am SO TIRED of having to educate the educators.  I am tired of getting beaten down to the point where I feel like my only choices are to pull him out altogether or leave him to rot in "life skills".

I have more to say, but right now, I am just so freaking tired.

"Are You Here?" Movie Review ***Spoilers and Yelling...Lots of Yelling***

On a rainy day, like today, one of my favorite things to do is watch a movie. 
My kids are in school, I have nowhere to be in particular today, so it was just me and OnDemand.

I had come across the title "Are You Here?" a few times recently and I thought it sounded promising.  I mean, Zach Galifianakis and Amy Poehler?  What could be bad about this movie?!?!?

As it turns out, virtually everything.  

Now, I am no movie writing genius, but I would think when you cast a couple of 
the funniest people in Hollywood today you would have them be, oh, I don't 
know...funny?  No!  You say?  That is too obvious?  Instead, lets portray them
as a severely depressed, borderline sociopath (Galifianakis) and an uncaring, selfish bitch (Poehler) and Voila! You have this horrendous piece of crap that I ruined a perfectly good rainy day (and wasted $7.99.  Thanks, bloodsucking BigCable!) watching.

Wait, it's a DRAMEDY, therefore, it doesn't need to be funny or serious, apparently, just really, really, horrifyingly awful.

You know when you get to the end of a movie and you are like "No.  NONONONONO, there is NO WAY that that is the ending.  NO!!!  WHAT DID I JUST WATCH?!?!?!???  HOW IS THAT AN ENDING???!!!???  IS THIS REALLY HOW I JUST SPENT TWO HOURS OF MY LIFE?!?!?!? AAAHHHHH!!!!!!!!"

What does it all mean?  Only Amish people really get it?  Everything else is plastic horses?  WHATDIDIJUSTWATCH?

Here is the link if you don't believe me.  Just don't ever say I didn't try and spare you.

Zach and Amy, for the love of all that I hold dear, PLEASE, PLEASE don't ever make me hate you in a movie again.  Amen.

Pancakes

It's a long weekend.  I love it when Sunday doesn't mean the weekend is coming to an end, it's only the middle.  Soak it up!  Do! Stuff!  I know what I will do (I think to myself), I will make delicious, cool looking pancakes that my whole family will adore so much, they will beg me to make them all the time and they will become the stuff of family legend.  They will be crying over my coffin thinking about how freaking ridiculously awesome these pancakes were.

Here is the actual recipe

(Don't they look great?!?  Not sure about the gummy worms, though, weird.)

I mentally pat myself on the back for being such a great mom as I stroll the market looking for the correct ingredients.  They don't carry an apple corer?  Oh well, I think...no matter.  I will just core these lovely Granny Smith apples by hand.  It should only take, what...30 minutes? (the real answer is:  infinity)

Two hours later, I have given up trying to make apple rings.  After nearly losing two fingers and ruining four apples, I have settled for making a small batch of apple rings and then, I will use the rest of the batter for apple pancakes...just dicing up the leftover apple and adding it to the batter.  

Not quite what I had in mind, but 120 minutes in, there is no way I am not making something on the griddle.

Oh crap.  The griddle is still on top of the fridge and needs to be cleaned.

After scrubbing the crap out of the non-stick (note:  foreshadowing) griddle, I finally start working on the batter.

I read the instructions on the side of the bag of gluten free pancake mix.  "How many eggs do I need?!?!? 5?!?!????!!!  What the hell, Pamela?!?!  Okay, I will use applesauce to make up the difference.  WHAT?!?!?!!!  How are we out of applesauce???!!???Okay, it's still fine, I will improvise.  Two eggs + Two tablespoons of Earth Balance + One cup of Almond Milk+ Whatever oil we have left = Five eggs, right?  Whatever."

The batter is finally prepared and the griddle is hot.  I place the apple rings on the griddle and begin to gently drizzle batter over them.

"What in the world?!?!?  There is no way to leave the middle circle open.  NO WAY.  Okay, that's fine.  They will be circles, not rings, but no less delicious or beautiful."

I am now sweating in my 100 degree kitchen and have gone partially deaf from the sound of the overhead exhaust fan as it labors fruitlessly to waft the smell of burnt batter away from the stove.

Brett comes in and asks if I can drive him to a friend's house.  I ask him very sweetly to wait until I am done making him THESE! DELICIOUS! PANCAKES! and turkey bacon and he backs slowly out of the room.  Smart child.

It as at about this moment that I try and turn the rings (now circles) over.  

If an appliance could laugh, this electric griddle would have.  Huge, loud, Teflon coated guffaws.  "Oh, you want to flip these pancakes?  These, right here?  No way in hell, lady.  Ha ha ha ha ha haaa."

Apple Ring Pancakes:  Nailed it!

I take a few belly breaths and count to five.  It is either that, or start dismantling the kitchen board by board.

I look over at the sad remains of the apple ring pancakes and decide to give in and just make pancakes with apple bits.  They are sure to be delicious, still, right?

I dollop the apple batter onto the comal (with about a half container of Earth Balance to ensure non-stickedness) and let go of the breath I have been holding in for the last two hours.

Danny comes in and takes one look at the griddle and almost starts laughing until he sees the flames shoot from my eyeballs.  Instead, he starts scraping the crap off of it, wondering out loud if the apples are still salvageable.

I start laughing...that maniacal laugh that you know is just one step below tears while wielding the spatula like a knife.

He backs away, nibbling on half burnt/half raw pancake batter and apple, swearing it is delicious.  This is an example of why we are still married.

In the end, I do manage to pull off some surprisingly good apple pancakes and turkey bacon, which only Brett and Danny wound up eating.  The other two rolled their eyes at me and reminded me why I never try and make breakfast in the first place.

Amy's Apple Pancakes

Prep Time:  Three hours

Crying Time:  Three hours (on and off)

Time Husband Spends Trying To Hold In Laughter:  Your entire marriage

Eating Time:  Three minutes

Cleaning Up Afterwards:  Ninety minutes

Yield:  12 Somewhat edible, very greasy pancakes

Warm

I love the summer.  It is, by far, my favorite time of year.  Everything around me screams "All is right with the world", my yard is overflowing with blooms in shades of purple, orange and red and green, green, green everywhere.  In July, I'll put my yard up against any other in looks.  It's not a well tamed and weed free yard, it is ALIVE and wild and gorgeous and it fills me with joy just being in it.

The feral-ish outdoor cats we care for are fat, lazy and happy.  They lounge on the furniture and luxuriate in the sun.  They have forgotten all about the harsh, prolonged winter we just experienced that really only left for good in the middle of May.  It's easy to forget how cold and bleak the winter can be when you feel the warm sun on your skin.

Somewhere in the back of my mind, however, there is that nagging, niggling little thought about how fleeting this all is.  Summer, as majestic and rich as it is, is only here for a few short months...thirteen weeks...twenty six weekend days...ninety some-odd total days.  

And then, the dying begins.  The petals drop and the days get shorter.  The leaves start falling and everywhere has the smell of rotting, dying vegetation that only weeks earlier was a delight to the eyes and nose.  

And I feel myself dying with it.  My life becomes smaller in the dark, cold time of the year.  I retreat within myself, like a caterpillar making a cocoon.  I want to sleep a lot.  I want to eat and sleep and watch bad television and pretend that it isn't happening...but it is and it does every year...  if I am lucky, I guess.  If I am lucky, I will get to experience this for many, many years to come.

I find that the older I get, the harder this change is for me.  If find myself waking up in July dreading the end of what has really only just started.  I get myself worked up about sleeping too late or missing any, tiny part of it.  I mourn every lily at the end of every day.  I wonder if I am missing it in my mourning.  Am I missing the beauty because I mourn it's passing?  Or, is there beauty in both?  The beauty in a lily is in the fact that it is impermanent.  It awakens on the day it is ready and for that day, it is full of life.  When the sun sets, it is all over.  This doesn't make the lily less beautiful, but more. 

It is July.  I live in the Midwest, outside of Chicago and the joke here is that we only have two seasons:  Winter and 4th of July.  Sometimes, it's "Winter and Road Construction".  Maybe that is part of my problem.  Once the 4th is past, I start thinking about that other season.  I am an optimist who is constantly warring with the pessimist inside.  My optimist is a bookish wimp and my pessimist takes steroids and works out...a lot.  My optimist tries to use logic:  "It's only early July!" and my pessimist sends her a mighty backhand.  My pessimist would always rather fight than reason.

July fourth is tomorrow.  It is high summer; hot, fun, full of life and food and festivals and carnivals and music and fireworks.  It is a cause for celebration and something to think about when we are knee deep in dirty snow on a dark and miserable January afternoon.

Saturday in the Park - Chicago

Summer is a limited edition and each one, though similar, is unique.  Grab on to it, bury your nose in it and breathe deep.  Make a memory and hold it close to your heart.  

We are alive in this glorious, fleeting moment.  Let's make the most of it.  And tell your inner pessimist to shut it.

An ode to my BFFFF

Oh, yes.  All the F's have meaning.  :)

We met about eleven years ago.

Our kids were attending the same preschool and after a few months of fawning over the adorable, blue eyed and blond haired kid with Down syndrome in my son, Evan's class, I decided that I would seek out his mom when I got the chance.

The chance came when Evan was turning four and we decided to have a party for him.  Since Nick was in his class (and I was in love with him), he got an invitation.

And his mom called me up, clearly emotional at the invite.  It turned out that it was his first invitation to a party and it was a pretty big deal.  Most parents of kids with obvious differences would probably agree.  We are all pretty sensitive when it comes to our kids being included and when it happens, we bawl.

One of the things I have come to realize about being a parent of a kid with Down syndrome is that when Charles was born, I was immediately given membership to a very cool and exclusive club.  I'm not saying all the members are awesome.  All Ds parents are not created equally.  We are not all "special" or "patient" or even "nice"; but, I have met some very, very cool people because of it.

Christy is one of these cool people.

So, we had our first phone conversation and by the time it was over, I knew that we would be at least BFF's if not BFFFF's.

I knew this because in the first five minutes I had already told her about my love affair with Dave Matthews and how I didn't want to actually, physically stalk him because I loved him so much that I didn't want to mess up his life.

Yes, I realize that this confession makes me sound like a lunatic.  (and just as a side note, I have calmed down over Dave Matthews, though I would never kick him out of bed turn down an invitation from him to play Canasta.  Jon Seda, on the other hand)...ahem...anyway...

I think the fact that she did not scream "WRONG NUMBER" and hang up on me, but patiently listened and then confessed her own super weird celebrity love affair fantasy cemented our friendship like crazy glue sticks to fingertips.

We were bonded for life.

I am grateful to her for so many reasons.  Here are a few:

1. I am kind of a shitty friend.  I am super demanding and I have very, very thin skin.  She lets me rant like a two year old who dropped her ice cream and patiently waits for me to stop my temper tantrum so I can apologize and we can move on.
2. Because of number 1, I have very few, real friends.  She is the kind of person that has people lining up to be her BFFFF and the fact that she gets me makes me feel pretty good.  
3. Even if I am not her number one BFFFF, she never lets on.  I am sure she reassures those other friends that they are number one with her AND THAT IS OKAY WITH ME.  But, I know the truth <<< wink >>>
4. She has my back, always.
5. She is incredibly funny and she has started her own blog.  I promised I would try not to be jealous even though she out-funny-ed me in the first day.  Remember number 1?  Yeah...

Here is the link to her super funny, new blog.  Please check it out, but don't leave me, okay?  I am ridiculously competitive and I have huge abandonment issues...

44

Reggie Jackson's number on the Yankees.

Five years into the "forever 39" phase of my life.

The age my mom was when I got engaged and the age I am now.

In two years, I'll be the same age my father was when a massive heart attack cut short his life and the same age my grandmother was when I was born.

I'm thinking about those people who are gone.

I'm thinking about what birthdays even mean.

This is not a significant number, but on the other hand, birthdays seem to gain significance as I get older.

I'm thinking about Meg Ryan in "When Harry Met Sally", crying about turning forty and Billy Crystal is incredulous because she won't be forty for eight years.  I am the Meg Ryan in this scenario.

I am thinking about ice cream trucks; the miracle I thought they were when I was seven and the smelly, speeding, overpriced nuisance I think they are now.

I am thinking about how long the summer seemed when I was a kid, even as a teenager who slept away beautiful, fragrant days and how short it seems, now.

I am missing the days of homemade cards written in just-learned letters by chubby boy hands.

I am hearing that line from a Billy Joel song; a line he probably wrote on a birthday of his own:  "The good old days weren't always good; tomorrow ain't as bad as it seems".

It's comforting, in a way.

Forty four.

It's not so bad.

Mitochondria

It has been too long since I have written a post.  I have been consumed by a bunch of crap, not the least of which is getting my middle son placed at his home high school.  

Here is how it is going so far, in a nutshell:

• Have first meeting cancelled
• Freak out
• Finally have meeting three months later
• Find out the "team" has no intention of letting my kid attend his school
• Fake smiles all around
• Virtual head pats for the adorable boy who brought his own notes to advocate for himself
• Mom ends meeting by admonishing the team for their lack of creativity

Before this meeting I was pretty sure that the "team" besides me and my husband were not going to be keen on Charles attending his home school, but I maintained the optimism that comes from knowing that you are right and they are wrong.

This was so, so stupid of me.

Here is the letter I handed out to the group before the meeting:

Dear Team,

This is my son, Charles.  We are here to find the best possible placement for him.  Before we do that, however, I want to remind you that he is not just a set of strengths and weaknesses.  He is a teenager, a much-loved son and brother, a good friend and a bundle of wit and sarcasm.  

He wants what all of us want out of life:  To love and be loved, to have friends and to be included.  That last part is tricky, because it can't really be quantified.  I am afraid that sometimes, the human being gets lost in the graphs and percentiles.  I am afraid that for some, my Charles is a challenge at best and a problem at worst.

Numbers are not my son's best friend, whether they are problems on a math worksheet, IQ points or figures on a percentile chart.  I realize that teaching involves testing and reporting, but I urge you all to look beyond that towards what really makes a life:  Being accepted and included.

Inclusion is not a pie in the sky fantasy, it is the only way to ensure that my child's life is seen as having as much value as those of his typical peers.  If you think I am exaggerating, consider what happens when people are segregated from society.  

Times have changed for people with Down syndrome, but until stories of prom kings and queens and team managers are more than feel good anecdotes, people like my son will not be fully participating members of society and that is what I want for my son.  My husband and I want full participation in life (not just school) for Charles and every child who comes after him.

I look forward to the day Charles walks across the stage in his cap and gown, ready to accept his certificate and to step into a world that is more accepting and inclusive than it is today, because of the work of teams like this.

Thank you.

(Charles' parents)

Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.  

~ Chris Burke

And they loved it. They thanked me for writing it. They had real tears in their eyes. And I thought: YES! They get it! It will be fine!!!

And then, Charles read his prepared notes; just a little bit about himself.

AND THEY ATE IT UP!!!

SO CUTE!!!

SO GREAT THAT HE IS SPEAKING ON HIS OWN BEHALF!!!

I THOUGHT SOMEONE MIGHT PEE THEMSELVES FROM SHEER GIDDINESS!!!

No one did, but they all beamed at Charles, like they were watching a monkey play the piano or a squirrel water ski.  

THEYCOULDN'TBELIEVEITWASHAPPENING!!!

And I was thinking, "Really? You know people with Down syndrome have thoughts, right? They are not smiling dummies. They have independent thoughts and likes and dislikes and dreams for themselves."

I think somewhere along the line, they missed that memo. They were so busy putting kids "like these" in a little box, that they couldn't see all the stuff that made them individuals.

The box is called Life Skills class.

After Charles spoke and after we talked about his current "levels" the meeting changed from 

this

 

to this.

They had to break us.

They had to break us and fold us into the little Life Skills box to make their lives easier.

I want to know who coined the term Life Skills as the name of a legitimate class. I get it for kids who grow up in institutions (horrible) and might need to learn how to navigate life, but kids with families? Isn't it my job as a mom to teach my kids how to be safe and read a recipe and navigate a grocery store? Seriously, shopping at a grocery store is a big part of the curriculum, because they go there once a week.

ARE YOU KIDDING ME?!?!?

Frankly, I find it insulting that this is the bar that has been set for my kid's high school career.  

"you know, we are gonna teach him about life and stuff; mostly, about buying Wonder bread and ordering at McDonald's".

What really stood out to me in the meeting (one of the things, anyway) is that they had a hard time wrapping their brains around how they would teach Charles about mitochondria in Biology.

I am not kidding.

Um, how about don't worry about it?

How about give the basics?

How about using the model from the science they teach in the life skills class as a start? ***headdesk***

Raise your hand if you have needed to know about mitochondria (unless you are a Biology teacher) in your adult life...hmmm, I thought so.

So, we have another meeting tomorrow and knowing what I know now, I am not overly confident that it will go well. My kid is not even coming, because I don't want him to hear (however nuanced and nicely sounding they put it) that he is not wanted at his own school.

I still know that I am right and my husband is 100% on board with me. That helps. But, knowing I am right and putting my kid out there are two different things. It is absolutely in their power to make things a living hell for him. And no one outside my little band of true believers will ever know that it was them that failed my kid and not the other way around. And who knows what kind of torment my kid will have to deal with if they don't give him appropriate support?

I believe inclusion is the only way forward. It's the only way my kid will ever be seen as an equal participant in life's journey. I also know that I will not sacrifice my kid on the alter of inclusion, either. I won't make him a martyr.

If I feel that they are setting him up to fail, I will relent and put him in the "other" class, or, I might just pull him out altogether and start a homeschool co-op with some of the other parents who are dealing with this.

It really shouldn't be this hard.

Here is the letter I wrote to keep myself on track at tomorrow's meeting. Please wish us luck.

Here we are again talking about Charles’ placement.  I appreciate this team giving thought to what my husband and I have said previously.  I realize that you don’t all necessarily understand why we are pushing so hard for inclusion.  The bottom line is simple:  It is Charles’ right to be educated amongst his peers.  As I have said before, it is not inclusion if it happens “somewhere else”, no matter how inclusive that environment may be.  Inclusion, to really, really work for Charles’ future needs to happen at his home school.  I understand that it will take some creativity on the part of this team, but more importantly, it will take open minds and hearts.  We are not alone in this thinking.  I know of many other parents in this district who want and are pushing for the same, simple thing.  

Yes, Charles will need supports and modifications, some of which will be major and ongoing.  He will need a modified curriculum, modified grading and supports with which to implement them.  Modified grading is not the same as “merit grading”.  Grading according to Charles’ progress on his IEP is not a ribbon for “trying”, but progress, which is all we ask for.  

As far as Algebra and Science go, there are ways to make these topics accessible.  If they are teaching a version of them in the self contained class at (the other school), they can be taught to Charles; again, this would just be a modification of the curriculum and it is a modification that already exists.  The tools are already out there in the district.  They just need to be implemented here at (the home school).

These many modifications will require a strong, one on one para-professional to implement.  Having a para would serve two very important functions:  Charles will have help and support for the classroom work and he will have someone to help him navigate a large school during passing periods and during less supervised time, like in gym and during lunch.  It will also alleviate some of the stress of the “unknown” in this inclusion process.  

Another benefit of having a para with Charles would be giving him the option of leaving a class and working in the library for a time, or taking a sensory break when things get overwhelming.  This will be paramount to Charles’ success.

While all of this sounds great and perfectly doable, I realize that there will be a learning curve for everyone involved.  My only real fear for Charles is the resistance to his being there.  Whether it be fear, or prejudice or outright hostility, I harbor no illusions that this transition will happen without a few issues.  Once Charles leaves my care and is in the school setting, it is up to the professionals present and in the larger school to take Charles’ success seriously; not just his academics, but his social/emotional wellbeing.

Let’s make this work.  Let’s not just “try” it, with an eye on the (other) program as our fall back.  Let’s just make it work for Charles and for the next child whose only wish is to remain with his friends and brothers where he belongs.  Let’s make (the home school) a model; not just for grades and academic achievement, but for inclusion as well.

Amy Dietrich Hernandez

*** UPDATE*** via my Facebook status

Success! They saw how passionate we were about keeping Charles a (home school mascot) and he will be one! We've worked out a collaborative program with (other school) where he will start his day there, get a few of the harder subjects in the morning, then spend the afternoon at (home high school) every day. We will push for full time as the years go on, but for now, this is the best of both worlds: more support in areas where he needs it and VISIBILITY at his home school. Whooo!

Guest post by Stacey Calcano: "An Open Letter to Author John Green On His Perpetuation of The Use of the R-word"

• Dear Mr. Green,
• I’ve just finished reading “An Abundance of Katherines” and have previously read: “The Fault in Our Stars,” “Looking for Alaska,” and “Will Grayson, Will Grayson.” As a woman of 40+ plus I have probably read more of your books than many of my peers. My oldest daughter, who is 17, and her friends are huge fans of your work and I read the above-listed books at her suggestion. I must admit that I have enjoyed your writing style, your penchant for weaving characters together, your ability to keep the reader interested throughout and your sense of humor.
• Sadly, there is a part of your writing that I have not enjoyed….your repeated use of the word “retarded” and its many iterations as a slur. My youngest son, who is 2 years old, was born with Down syndrome. He was born into a world where many people think he should never have been born, where people think it’s okay to ridicule him simply because he has an extra chromosome. They judge him and the person he will become, before they’ve even laid eyes on him. Now, I’m sure you did not mean your use of the R-word as an insult or a slur towards my son, or those like him. I’m sure your intent was not to offend, but to use vernacular that is widely used by your reader base. What you may not realize, is that your use of the word reinforces the negative connotation and normalizes its use amongst teenagers. When these types of slurs are accepted they enable disenfranchisement on a very large scale. What I didn’t notice in your writing was the use of other slurs. Slurs such as the N-word, gay, homo, fag, the list could go on and on of words that were once widely used and with impunity in our society. These words were often used in order to garner a cheap laugh at the expense of others. As African American and LGBT rights have flourished, the use of these words became less and less acceptable. People began to realize that words have the ability to target and diminish and entire population of people. In today’s world, people with cognitive disabilities and their families and advocates are asking society to stop using the word “retarded” and all of its many mutations for the exact same reasons. It demoralizes and diminishes an entire population of people, sight unseen. At a minimum, I do hope that you will reconsider your use of the word in future writings. It would also be amazing if you would take a vocal stand against the use of the word and join the “Spread the Word, to end the Word” campaign. Just think of the impact you could have. http://r-word.org/

Respectfully, Stacey Calcano (mother of 4, ages 2 to 17)