"...although it would be delightful, it is not possible for the culture to make up for the society." - Fran Lebowitz

I was watching Real Time with Bill Maher, tonight and almost turned it off because Seth McFarlane was going to be on.  Though, I agree with him often politically, the seemingly bottomless well of ignorance and hate he spews towards the intellectually disabled is hard to ignore.  As my worldview has been colored by Down syndrome for 18 years, it’s hard to get past.

Long story short, I stayed for Fran Lebowitz.

The quote that is the title of this little diatribe is one that she spoke in response to a question about the Oscars being “too white”.  She didn’t say much during the show, but that quote, "...although it would be delightful, it is not possible for the culture to make up for the society.", was a gem.

And I agree.  

It would be nice if having more black Oscar winners meant racial tolerance, but it doesn’t, in the same way that having a kid with Down syndrome crowned prom king does nothing in the grand scheme of things for kids with i/d that are more often than not, excluded.

I can see people who think Betsy DeVos is going to be a dandy Secretary of Education screaming “Well, what more do you want?!?!???  I mean, HE. WAS. PROM. KING.  Forget that there are hundreds of hours in the school year where he is separated from the “typical” population.  Forget that he is in danger of losing even the shitty supports that are in place at the moment.  Forget that people fear the unknown, and in too many schools, kids with Down syndrome are not known as friends and peers, still, today.

I have some very lovely snapshots of my son and a couple of “typical” kids.  If I posted those pictures without comment, you would think that these are his close friends.  They are not.

He spends hours texting and calling and leaving barely intelligible messages on their voicemails, and rarely, very rarely does he ever get a call or text back.  About once a month, one of these boys comes over for a half and hour or an hour at most.  He NEVER gets invited to their house.  It is heartbreaking to have your kid tell you about a party that he wasn’t invited to, or who is sleeping over whose house.  He wants it so badly to be him.  He wants SO BADLY to be one of the guys.  

I’m not bashing the kids.  They are good kids.  They are nice to my kid and have fun with him when they are here.  I honestly think they don’t mean to exclude him.  They just don’t think to INCLUDE him.  They don’t see him as an equal, and that is the most heartbreaking part.

I don’t expect the world to be color or gender or orientation or disability blind.  Not seeing differences is impossible and dishonest.  Not seeing those who are different than you as peers, is a tragedy.  Before we can have equality, we must see each other for the equals we are.

I am pulling for La La Land, but have not seen Hidden Figures, yet.  I guess I need to get on that this weekend.

Unreasonable

I am a passionate person.  I say passionate because it sounds way better than "jerk face" or "crazy" or "bitchy".  As in: "I am not a crazy, jerk-faced bitch, I am just passionate! (damn it)".  I told someone the other day "I feel EVERYTHING".  There are worse issues to have.

So, when I woke up this morning and saw that the Blackhawks had won***, I was (unreasonably?) happy.  I mean, I know; it's just a game and in the grand scheme of things it means nothing; but living in Blackhawks country during the playoffs when your team is on fire is really, really fun.  Because I am such a sap and my heart is just millimeters beneath the surface, I get choked up seeing the buses pass by with "GO HAWKS" on their marquees.  I crank up the TV during the ridiculously loud National Anthem and cheer and whistle along.  I clap and yell at the refs and whoop and curse.  In those moments, I am one of the herd and I love it.  It is so unlike (most of) the rest of my life when I am in that weird 10% that goes against the grain of seemingly every situation.  

*** it ended at one a.m. after starting the THIRD overtime.  I get up early.  I stayed up for the first OT, then went to bed hoping for the best.

BLACKHAWKS WIN!

This morning I also found a prom invitation for my middle son.  My Charles got invited to...the "Special", district-wide prom.

I wanted to scream.  

After reading the handout that came along with the invite, I wanted to scream some more.  This is an actual excerpt:  We encourage the students to enter independently to make it as much like a REGULAR prom as possible (emphasis mine).

WHAT?!?  So...it's a prom but not a regular prom.  Ohkaaayyy...

I just don't get it.  Will someone please explain to me why my kid can't just go (or not go!) to the ACTUAL PROM like everyone else?  Seriously?!?!?  Why is this even a thing?  

Like most things like this, I am sure that it was started out of love and concern and wanting something nice for our (different) kids; but as with everything else, separate is NOT equal.  Separate classes are not equal.  Separate schools are not equal.  No matter how inclusive and welcoming you think your school is, these types of classes and events only shine a spotlight square on differences and it is not a flattering glow.  

Let's be real.  The prom is a rite of passage, but the event is not equal for everyone, anyway.  Not everyone has a date.  Not everyone can afford a tux rental or a $600 dress, hair stylist, manicure, pedicure, limousine and on and on.  Not everyone has a gaggle of friends to hang out with and eat dinner with and (ZOMG!!! iamsowasted) party with afterwards.  Not everyone wants to, either.  For some, it's too mainstream, too bourgeois, too everythingtheyhateabouthighschool, and that is fine.  Some of us went to our senior proms with boyfriends they should have broken up with months before so that they could dance with the ex-boyfriend they should have gone with, instead.  

I mean, I have heard.

So, here I am again, in that seeming minority of people that thinks these things are a horrible idea.  And I am sure to get crapped on for crapping on it.  Let's think about it this way, though.  Is a "whites only" prom a good idea?  Or is it totally backwards?  Seriously?  How about proms that keep out kids because of their sexual orientation?  Effing REALLY?!?  No?  Not a great idea, you say?  Yeah, this is the same.  It is EXACTLY THE SAME THING.  Many people just don't see it, yet.  Am I unreasonable?  Maybe.  Maybe I would have more friends if I just kept my mouth shut and went along to get along.  Maybe... and, maybe my middle son will go to his Junior or Senior prom and maybe he won't. 

Just like everyone else.

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...