Monday, December 15, 2014

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.



Friday, October 24, 2014

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.  

Thursday, October 9, 2014

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 Thisthis, 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.

Thursday, September 4, 2014

"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.






Sunday, August 31, 2014

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.


(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


Thursday, July 3, 2014

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.



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.

Wednesday, July 2, 2014

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...