Graduation Day is Almost Upon Us

My oldest son is graduating high school (hopefully) in 10 days.  There were more than a few moments of doubt that we would ever get to this place.  Yeah, my kid has got some issues and I have more than a few issues with school, with expectations, and with life in general.

So, it is as a parent of this type of child, and as a person who hated and did not fare all that well in school, any school, that I look at these commencement exercises as not a beautiful stepping stone, but something to be done with, preferably quickly.

First of all, the ceremony is on my birthday.  Name for me one person who wants to sit at a graduation ceremony on any day, much less their birthday. Seriously, please, tell me and I will call them up so that they can take my place.  My kid will never know.

Second of all, I received in the mail a laundry list of rules of etiquette that irritatingly took the jam out of my doughnut.  One of the bolded headlines is MARCHING INSTRUCTIONS.  Is this a class of Hitler Youth, or just, you know, regular kids?

A few tasty excerpts that really get my blood boiling are:

" you have paid for your cap and gown so you can "keep it" as a souvenir"  

Whoo, whoo, whoo!  Effing really?  How much did that cost?  WHAT THE HELL DO YOU DO WITH A GRADUATION GOWN AFTER GRADUATION?  And why is "keep it" in parentheses?  Is it because you won't "keep it"?  Your "parents" "will" in their "garage"?  

What a total waste.

" boys should wear a dress shirt and tie, dress slacks with dark socks and dark dress shoes.  Girls should wear a dress or a skirt and blouse "

a)  Great.  There goes another $150
b)  What century is this?  Why do girls have to wears skirts or dresses?  

Gross.

" A professional photographer will be taking a picture of each graduate as he/she receives the diploma. (this part is inexplicably underlined)  These pictures will be available for purchase on line on a secure website. "

Meaning:  Cha ching  

I will take my own shitty pictures, thanks.

Oh, and " the ceremony will be recorded and you will be able to order a copy."

Oh, goody.  Nothing better I can think of than fast forwarding through two hours of yawn-tastic ceremony to watch three seconds of my kid NOT looking at the camera.  And I get to pay for it?  Where do I sign?!?  

One last thing:  "you will receive your diploma only if all financial obligations with the school have been cleared, and if you exhibit appropriate behavior during the entire ceremony."

I would love for them to try and tell me that my kid did not behave, so therefore, he does not get a diploma.  Nice try.  We are finally out of here, I think the kid is entitled to flip off the principal, no?  I mean, NO.  I don't want my kid to flip off the principal, but seriously?  Way to try and scare us into being good little automatons one last time.

Maybe I am just an antisocial jerk.  Maybe I just don't get it.  I mean, I get (to a point) rules.  I get (to a point) ceremony.  I just don't get why my kid can't wear sneakers.  I don't get why there is not an open bar for parents (they would clean up!) to make the ceremony more enjoyable.  And I really don't get mortarboards.  

Anyway, Happy Graduation, everyone!  ***takes a shot***
 

The Spiral

I would like to share a whiny Facebook status with you...my status, before you ask...

"I seriously feel like everyone else's kids fit in fine in public school ( I know this is not true, but having kids that don't feels very lonely at times ) and I wonder what the heck am I doing wrong? Why do I fight against a system that clearly doesn't get them and that only wants to make them conform? It is a day-to-day struggle and I don't have any answers except to keep moving forward."

Venting has it's place and Facebook seems to be it.

I got what I was looking for from this status; many sweet comments, lots of commiserating, a couple of words of wisdom.  

If I have learned anything in my forty-four years, it is that usually, when I feel the worst about things, I am about to turn a corner.  Not always, but most of the time.  

We have turned a corner, at least, I think we have.

I am a proponent of inclusion; that is, by my own definition, full participation in life for all people.  

When I am talking about school, especially for my middle son, Charles, who has Down syndrome, inclusion means being at his home school, not the school five miles away that has the "services" he needs.  No, thanks.  My kid does not need "servicing", he needs educating alongside his peers.

I was reading some terse responses that I had received from emails to Charles' teachers, while trying to figure out how things were going.  Terse doesn't work well in an email, especially when you have a super-sensitive mom on the other end reading it in annoyed teacher-voice.  Words like "needs prompting" feel like tiny little paper cuts on your eyeballs.  Everything said and mostly, left unsaid, makes me question my purpose.  Every.  Freaking.  Time.

So, the howling self-doubt cyclone grabs me out of my seat and spins me towards the ceiling and sucks me into the self-pity vortex.  After hyperventilating myself into a mini coma and falling asleep on the couch, I arrived at the next morning's meeting looking every bit the insane, inclusion terrorist that my kid's teachers think I am.  My husband and I await the pronouncement...

And they say something good.

They say something nice.

They are starting to get why I do what I do.

They see MY KID and not the problems my kid imposes on them.

They are smiling.

For real.

They are talking about next year and what they are putting into place.

(on their own!!!)

They tell me (without telling me) that I was right.

That inclusive math class is working.

He is making friends in that gym class.

The students are embracing him, as I knew they would.

It's not all roses and fairy dust.  As I signed in, I saw my boy down the hall.  As he turned the corner, the girls standing there smirked and giggled, looking at his retreating back.  He is the smallest kid in the hall.  Maybe they are giggling at his cuteness?  Maybe they are noticing his cool cap?  It's doubtful.  He doesn't see them and I am grateful.

I have heard the argument that inclusion does not work for everyone.  I say they are wrong; but hear me out.

There are trade-offs.  My kid is probably not learning as much about his subjects as he could in a smaller classroom.  He is not getting as much educational support as he probably needs.  He is mostly isolated, not physically, but socially from most everyone else.  It is NOT perfect.

My husband and I have chosen VISIBILITY over academics for our middle son.  We have decided that it is more important for him to be seen by his peers than to get A's and B's.  We see it as a literal life and death struggle for Charles.  What will his life be after school if the kid's in his home school have never experienced a person with Down syndrome?  How will they treat him?  Will they want to work side by side with him?  Hire him?  Or, will he always be "that guy with Down syndrome?" or worse, "that retard"?

I grew up in the 70's and 80's.  The encounters I had with people who looked or talked or acted "different" were few and far between and NONE of them left me feeling compassionate.  My reactions were usually fright and disgust.  I am ashamed to say this, now.  I feared these people because they were not my peers.  They were "others" and "freaks".  They did not belong in my every day life because they were not IN my every day life.  I can't help but think that if I had had more exposure to the world of difference that my life could have been shaped in a more positive way earlier on; but that is not how it happened.  It happened because 16 years ago I found out that my second child would be born with Down syndrome and a major heart defect.  The news broke me apart at first, but quickly, I learned that it had broken me open.  This was MY child.  Nothing was going to change that.  I want the best for him, the same as I want the best for my other two boys.

So, we fight for him to be a full participant in his own life.  We fight to keep him at his home school with his brothers and where his neighbors can see him as just another kid.   I don't think this is a pie in the sky fantasy.  I have already seen changes in these short, sixteen years.  My kid was the first kid with Down syndrome to be fully included at our home school for kindergarten.  He is the first to be included at his high school.  We pushed a little, got a little lucky, and maybe, just maybe, the timing was right.  

Inclusion IS for everyone.  We have learned that separate but equal is anything but.  That doesn't mean it works in every case; not yet.  There are far, far too many school districts that are stuck in the 70's.  I have many, fierce mama bear friends who have decided that the struggle for inclusion for their kid was causing more harm than good.  The timing is not right for them and they are doing their best with what they have.  You do what you've got to do.  In conversation with these mom's, they kind of wait for me to be judgmental of their decision to NOT pursue inclusion and that makes me feel awful; because God knows that they have been judged and judged and judged again.

I don't think I am anything special and I tell them that.  I tell them about luck and timing and willingness.  Our schools were willing (with some prodding) to include my son.  If I thought for a second that the struggle was causing him undue stress, or harm, I would pull him out.  I like to say that "I would never martyr my kid on the altar of inclusion".  I'm not sure if I made that one up, or read it somewhere, but I have been saying it for awhile and it perfectly sums up my feelings.  Unlike Rosa Parks, my kid is not choosing to take a stand; I am choosing for him.  I have to be careful to weigh his feelings and his best interests and include him in the process along the way.  As he has gotten older, he is more involved and anytime I ask him about which school he feels more comfortable in, his home school wins every time.

Things are not perfect.   That's life.  We often take two steps back for every one forward; but we are learning and growing and helping to pave the way for all the children that come after mine to have an easier journey.

I look forward to a future in which everyone knows and has grown up with individuals like my Charles and it is no big deal because of that.  It's not about not seeing difference, it's about seeing it and embracing it, because it is a part of life.

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!

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.

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.

Not Quite Ready for Acceptance

Still angry
trying not to let it
poison me

I wish you would 
just listen

Hear my pain

Maybe it would 
get better
go away

If you would just listen

I could tell you how I feel

I might yell, cry, scream

but it would be out 
in the air
instead of wasting me away

The truth is never the enemy

Lies kill and truth saves

I can't pretend to be okay

I can't pretend nothing is wrong

I can't

I just can't

Sentimental Me

Maybe it's foolish.  I've been called worse things.  

It's easy to become sentimental as you get older, but I was born that way.  From as far back as I can remember, I saved little things.  I had a terrible time parting with anything someone I loved gave me, whether it was a plastic ring from a gumball machine or a stuffed animal or a birthday card.  

When my Mom, or grandma, or grandpa would kiss my cheek, I would be careful not to rub it and could feel it, lingering there, for a long time afterwards.  

The one and only year I went to camp, the girls in my cabin were mean and clique-y.  Though I felt a bit lonely, the fact that they weren't nice to me didn't bother me as much as the fact that they wrecked the bed that my mom so nicely made for me before she left.  All those thoughtful, tight tucks, undone in a fit of eleven year old menace.  

If you look in my purse, I know you will find at least one old shopping list written by my Mom and a note about my worn out tires from my Dad.  In the kitchen drawer, notes from my Dear Husband about slippery roads, hot coffee and cats.  On the top shelf of the closet, nearly every drawing, project and card ever made by my children and birthday cards from relatives dating back to the 70's.

My father's mother passed away last April, but her voice is still on my answering machine.  I'd still have my other grandmother's voice as well, but her last message to me got erased.  Believe me when I say it really bothers me that it's gone.  I also had my youngest son's voice on there, from the day he first rode his bike (alone!) to a friend's house.  He called as soon as he got there.  "Hi Mom.  Well, I just wanted to call and say that I made it and I'm fine.  Well, see you later.".  You see, I have it memorized, even though it too got erased when we had to get a new phone.  

Books and clothes and televisions and cars and other things, I have no problem giving away.  I don't get attached to big things; not really.  I'd rather someone else have them, if they can be useful to them.  Over the years, I've managed to pare down the sky high pile of letters and cards to a more manageable amount, as well.  Now, instead of every birthday card my great grandmother ever sent me, I only have one; but I won't part with it.  

I still have my favorite childhood stuffed animals and every silly letter my husband wrote to me when we were apart for four months the year we got engaged.

I worry that I haven't taken enough pictures, spent enough time, taught my children all the things they need to know from their mom.  I worry that they'll grow up and leave and I worry that they won't.

I want to take all these things; the papers, the pictures, the voices and the worries and lock them away in a time capsule.  I want to cement them into the cornerstone of my life; knowing that these things are only a small representation of what really matters.

Here and now, what I have shared, what I remember, who I have loved, who knows that I love them; those are the real things worth keeping.

I USED to be Hot, Damnit!

My husband is really good looking.  He's got this very potent Apache Indian/Mexican/tiny bit European thing happening and apparently, he got all the best traits of each.

When we first got together, a million years and three children ago, we were fairly compatible on the looks scale.  Because we lived in L.A. at the time, neither one of us was up for any modeling jobs (see my explanation of L.A. hotness math right here), but we were doing okay, even though I felt kind of chunky at the time.

Just kids, ages 28 and 23.

***note*** 

Chunky is a relative term.  At this point, I would probably, willingly give up an appendage to be 1993 chunky.  My DH would not need to do this since he is the exact same weight he was in 1993.  So, so unfair.

Twenty years later

Okay, well, he's doing a kind of squinty thing in this, more recent picture, but otherwise, he looks basically the same.

He's still got the same jawline and adorable dimples and clear skin and...he's just still super handsome.

I, on the other hand, am not feeling quite so adorable.  Twice in the last two weeks, I have seen young women check my husband out, look at me, then back at him.  I know what they are thinking.  They are doing the math and according to their version of hotness math, we don't add up. I've seen plenty of younger girls check my husband out over the years, but it's only recently that I have noticed this phenomenon.  

It makes me happy that he still turns heads.  

It makes me wish that I still did.

It makes me feel pretty terrible about myself.

It's typical in these instances that I want to pull out an old picture of myself and scream "I USED TO BE HOT!!!" at the offenders.

Actual abs

But, I don't and they wouldn't care, anyway.  They would just shake their young, pH balanced hair in pity at the crazy, chunky, middle aged mom and her obviously vision impaired mate.

They don't get us.

They don't realize what we have have been through or what drew us together or what still keeps us going.  They don't wonder what makes him ageless (is it his genes or is he a vampire?), they just see that he looks good.

His tiny facial crinkles add character.  

My wrinkles add years.

His bald head looks intentional.

My short hair looks like I gave up.

It is disconcerting when these looks occur after I have actually given thought to my appearance.  It hurts my feelings to have chosen an outfit specifically because it made me feel pretty good, only to have someone look me over and wonder what I was thinking.

And it probably shouldn't matter to me.  After all, I HAVE the hot guy and unless I am terribly mistaken, he isn't going anywhere.  Those young things barely register to him and if he even notices, it's for a second.  He has never made me feel less than beautiful and young and desirable.  

It's not these young girls that are the problem.  It's the fact that I care at all.

The treadmill is calling my name.

Heart Tale

In 1998, when our oldest son turned two, my husband and I started thinking that it would be nice to have another child.  Suddenly, our baby was turning into a big boy and we were starting to miss that "new baby" smell.  

It was October when we found out we would be parents again.  We hoped for another boy to be best friends with our oldest.  

Months passed and my pregnancy was smooth.  In February, we went for an ultrasound.  The technician said that she was having trouble viewing the baby (boy!)'s heart and could we make an appointment for a level two ultrasound? 

We were thrilled to get our wish of a boy, who we would name Charles, after my dear grandfather.  The alarm bells did not go off at all.  At the level two appointment, I had no fear until the technician left the room and came back in with my OB.  "Just trying to see his heart!", they chuckled uncomfortably.  He suggested that we talk in his office after I wiped the goo from my stomach.

Here is where the alarm bells started going off.

We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time.  He looked a bit grim and was apologetic almost to the point of tears.  I was trying to wrap my brain around what Down syndrome had to do with my baby's heart.  Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance.  

He suggested, gently, that I have a pediatric cardiologist look at the ultrasound and that I have an amniocentesis to check for Down syndrome.  I agreed to both these suggestions and at some point, we walked out of the office, shocked and stunned and numb.  

We had to wait a few days for both appointments and there would be further waiting to get the results of the amnio.  

Waiting really sucks.

Talking to the pediatric cardiologist was surreal.  She explained the diagnosis:  Complete Atrioventricular Canal Defect.  It sounded scary.  Here is the definition taken from the American Heart Association website:  

A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.

This was no run-of-the-mill hole that would close on it's own.  My baby had a big hole where he should have valves and chambers.  I was aware of the doctor talking about repair and heart failure and how big my boy would have to be before they could open up his chest, but all I could think about was how sorry I was that he would have to endure all that.  This poor little guy, not even out of the oven yet, was looking at open heart surgery before he turned one.

"But, but ( I kept saying) he is growing so well!" and he was.  I could not imagine how he could be so ill when he seemed to be thriving in my belly.  The truth was, his heart didn't have to do much in the womb.  I was doing most of the work at this point.  I was happy to keep him safe for the time being and terrified of what would happen when he was born.

In March, we found out our second son had Down syndrome.

We had expected this to be the case, since learning that Charles' particular defect was so common in children with Down syndrome, but it was another blow to us.  So much "bad" news about a kid who would, over the next 15 years, enrich our lives beyond measure.  But we didn't know that, yet.  This was a time before Facebook or Google.  Finding information about Charles' issues was daunting and mostly, really scary.  Hardly any of the information I found was comforting.

The weekend after the Down syndrome diagnosis, we went out to breakfast.  We were scared and sad and looking to distract our two year old.  When we sat down, we saw a family in a booth nearby.  Like us, they were a mom and dad and son.  Their son looked to be about fifteen and he had Down syndrome.  I marveled at how totally normal they looked; how happy.  I looked at my husband at that moment, saw that he was seeing the same thing and we both instantly knew it would be fine.  We would get through and someday, we would be the family for someone else to look at and say "Huh.  They look so normal".  

If anyone wonders why I push/scream/beg for inclusion at every level, this is why, but that is a blog post (or three) for another day.

Charles let us know of his imminent arrival in the wee hours of June 6th, in the middle of a fierce thunderstorm.  He wasn't due for another three weeks, but Charles has never had much use for schedules except his own.

When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy.  I had never been more happy to meet another human being in my life.  After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.

Over the next almost six months, our main jobs were to keep Charles as healthy as possible and to get him to gain weight.  He was not what you would call a champion eater, so I was pumping breast milk night and day for him.  He was diagnosed with failure to thrive and we began supplementing his breast milk bottles with a heavy formula administered through an N.G. tube overnight.

By the time he was four months old, we were giving him medicine to offset the affects of heart failure.  I've learned that heart failure sounds scarier than it is, but it's still nothing you want associated with your kid.  At this point, he had bulked up sufficiently that they decided to schedule his surgery.  He would be admitted to Children's Memorial Hospital in Chicago on December 5th, 1999, one day before his six month birthday.

As I said before, waiting sucks.

I passed the time marveling at his smiles and laughs and his long, Kewpie doll hair. I found myself looking at his sweet, smooth baby chest, knowing that he would soon have a long scar, marring it forever.  I put my hand over his broken little heart and willed everything to work out well.  

As we exited the tollway on the way to the hospital in the dark of the early, winter morning, the song "You'll Be in my Heart" (listen to it here) came on the radio.  I literally can't type those words or hear the opening notes of the song without crying. 

Our boy was so little that the anesthesiologist carried him in his arms back to the operating room.  The fact that he was smiling, that he had no idea what was about to come made it almost worse for me.

Then, the waiting.  So much sucky waiting.

We were warned that our baby would be unconscious and that he would look bloated.  He was and he did and it was a little hard to take, but he was alive and by all accounts doing very, very well.

Charles went from a sleepy, poorly eating baby to a chunky, healthy baby within weeks of his first surgery.  He was home within a week.  The change was nothing short of miraculous as far as I was concerned, but typical to the doctors and nurses whose job it is to fix these kids.  

It is amazing to me that a surgeon could take my poor son's little mess of a heart and make it into a well functioning organ, but that is exactly what he did.  I was grateful to him for delivering my son back to me and even more grateful that when he needed a second repair to fix a leaky valve almost six years later, the same, amazing surgeon would again bring him safely through and make his heart better than new.

The second surgery was in some ways harder than the first, because at six, Charles was well aware of needles and hospitals and pain, but he was braver than the rest of us.  He handed over his Gameboy, let us hug and kiss him and wheeled away from us.  

Hours and hours of terrible waiting; but again, he came through brilliantly and recovered so quickly that we had to slow him down for fear that he would open up his surgical scar or injure his healing breast bone.  Keeping a six year old boy still is no easy task.  Less than three weeks after his surgery, he was climbing up the school bus steps on his way to Kindergarten.  I shed many happy tears that day.

Charles is now fourteen and he has a routine visit to the cardiologist just once a year.  His repairs were so well done, that even his cardiologist has trouble hearing any murmur (due to a slightly, chronically leaky valve) anymore.  He takes no heart medication at all and has no restrictions because of his condition.  The only physical reminder of his surgeries is the scar from his clavicle to above his navel.  He talks about it now like it's a war wound.  He's kind of proud of it.  He's definitely earned that right.

Shame On Us

Today is Robert Ethan Saylor's 27th birthday.  

If you don't know Ethan, I have written about him here, here, here and also here.

I will sum up Ethan's story in a few words:  He was born in 1987.  He had Down syndrome.  He loved and was loved.  He died on January 12, 2013, three days after his 26th birthday, over the price of a movie ticket.

My last line usually garners much debate in articles, but essentially, that is what happened.  The exact details of the incident that happened in the few minutes between screenings of "Zero Dark Thirty" may never come out, because maddeningly, shockingly, sadly the off duty officers involved in Ethan's death were never charged with anything.  Ethan's death was ruled a homicide, but no charges were ever filed (you can read more about that, here).

I find it hard to understand.  If someone can be charged with involuntary manslaughter when they accidentally kill someone with their car, shouldn't they be charged with the same if the accidentally kill someone with their hands?  I am no legal scholar, but something seems amiss, here.

Since that day, it has been mainly on the family to speak out.  They were joined by some Down syndrome advocates in crying out for justice.  We have called upon our national organizations to act, to denounce and to support and eventually, with much prodding from the advocates, our national organizations began to speak out, though,  too quietly and nicely for my taste.  If it had been up to me, as director of a national organization WHOSE VERY REASON FOR EXISTING is to advocate for those with Down syndrome, I would have called for an ad in every national paper saying "Down syndrome is not a cause of death".  But, that's just me.

So, it was mostly up to the family and a small group of fierce advocates to get the story told.  Slowly, articles began to appear in national papers, but still there were plenty of people even in the Down syndrome community that hadn't heard about the story, even six months after it happened and even still, today one year later.  I find that absolutely appalling.  I find it hard to understand why you can say the name Trayvon Martin and everyone knows whom you are speaking of, but saying the name Ethan Saylor doesn't even necessarily ring a bell with people who should care the most.

Part of me understands that people don't want to be reminded of all the terrible things that happen in the world.  I can relate to that.  I don't watch the news with any regularity because of it; it all seems like bad news, from the top stories to the weather.  They may save 45 seconds at the end for some kind of "feel good" moment, as if that will erase the last half hour from our collective psyche.  It doesn't work.

So, many of us surround ourselves with what feels good and we try to ignore the bad and the ugly.  We look at cute baby pictures instead of dealing with what is frightening.  I do it, too.  There are times when calling for justice seems like a monumental task; mostly, because it is.  There are times when all I want is to hug my own kids and look at pictures of babies and kittens and to stick my fingers in my ears and say "la la la la, I can't hear you".  And I do; sometimes, for weeks.

I have to get back to the fight, though.  I can't tolerate just being sad or angry.  I have to act, or else I feel like I have no right to complain.  I deserve an injust world if I am not willing to fight for justice.  

I think this is a lesson that the Down syndrome community needs to learn from the LGBTQ community.  When one of theirs is hurt or killed, we all hear about it.  We all react.  Those of us who have the will, act, in ways big and small, so that justice can be carried out.  We work together to make the world better, not just for LGBTQ people, but eventually, for everyone.  

I have written before about this line of people waiting for justice.  Individuals with intellectual disabilities are on the back of the justice bus, it seems.  I wonder why we can't see that the line really doesn't exist and the bus is a figment of our imagination as well.  We are all human and we all want and need the same things.  A cry from one of us should be heard by all of us, regardless of race, sex, station, orientation, religion or lack thereof, etc.  If I can't see a bit of myself in every other living being, what hope do I have that someone will relate to me?

I urge the national Down syndrome groups to start acting for real change.  Do not let another year go by without calling loudly, publicly for change in the public perception of those with Down syndrome.  It's not about preaching to the choir.  It's about demanding that the rights for our children are recognized.  You have the means, you have the forum, all you need is the will.

I urge gay rights groups and women's rights groups and minority rights groups to look at Ethan and see your own fight and join us.

I urge individuals to stop crying over how sad this is and DO SOMETHING!  Pick up a phone, send an email, write a letter or a comment or a blog post or SOMETHING.  Take action, or expect to see more of the same again and again.

If Ethan's tragic death can mean a change in the way people with Down syndrome are treated, there may be some measure of peace his family could receive in that knowledge.  Isn't it the least we can do for them?  For Ethan?  For other victims of injustice?

If we don't care enough to act, shame on us.

Money Doesn't Buy Happiness But Neither Does a Foreclosure Notice

I am not poor.  I have a roof over my head (as long as I can stay on top of the sky-high mortgage for my cosy, three bed, one bath ranch), I have warm clothes, I have food, I have my basic needs covered.  My furnace is running, which is a good thing since it is nine degrees outside.  I contributed to charities this year and bought birthday and Christmas gifts. I even have cable and WiFi, which is how I am able to write this, today.  Of course, if I had no WiFi, or laptop, I could always go to my local library to use their computers.  It would be inconvenient, but obviously, doable.  

This is what I want to talk about today; the inconvenience of being in a less than ideal money situation.  

My family and I live paycheck to paycheck.  We put away a few dollars every week for a rainy day, but our little savings would not do much to save us from financial ruin.  
It's something, enough to spring for a part for the ever-failing dryer, or to pay an unexpected expense; provided it was a relatively small one.  It won't cover my husband missing a few days of work if he caught the flu, though.  My husband is in a union and his salary is very good, but I would love to talk to the geniuses who decided not to negotiate for sick or vacation pay or even holiday pay (hello?  Christmas and New Year's?).  

In an ideal world, we would figure out the cost of those days off (five major unpaid holidays, two weeks of vacation and another cushion of five days for illness) and we would come up with an amount in the neighborhood of $5000.  Saving for that would mean putting aside $100 per week.  Putting aside another twenty per week for unexpected costs puts our minimum ideal savings plan at $120 per week.  Some weeks we have it, some weeks we don't, for reasons I illustrated earlier.

The problem with this is that often times on the lean weeks we need to borrow from the fat weeks to get through.  What winds up happening is that we never really save anything.  We usually get a decent tax refund and a shrewd financial planner would probably tell us to put that money aside.  That would be great, if at some point we didn't need a new washer/dryer/exhaust system for the car/roof/windows... you get the picture.  

The vicious cycle that we live in is that we can never hold onto a chunk of money for very long.  It's not that we blow it on fancy clothes or purses or shoes or vacations (ha!), it's that it gets pissed away on stuff that has waited too long to ignore.

This is where the inconvenience part really comes into play.  If we had more money, we might be able to look for sales on things, so that we can buy them for less instead of buying them RIGHT! NOW! for whatever cost, because it went bad three days ago and we can't live without it for much longer.  It would mean replacing our roof before it starts leaking and the damage drives up the cost.  It might mean never having to pay late fees.  It also might mean that our credit would be better since we wouldn't be late paying bills.  Our mortgage company couldn't charge us all the fees involved with paying late.  An extra sixty here and thirty there, really adds up.  If our credit was better, we could also negotiate a better rate, instead of the 6.75% we are paying now.  

Even with all of this, I haven't even gotten to the worst part:  the stress that comes from worry.  If all I ever had to worry about was money, I guess I would be okay.  I'm okay anyway and of course, there is more to my worry than the balance in my checking account.  Having had my middle child go through open heart surgery twice in his young life, I can assure you that when it comes right down to it, when your loved ones are safe and healthy, money seems like a mere nuisance.

You could ask me why I don't work.  I mean, I did work full time for about three years after my kids were in school full time.  The reasons for my not working now are as simple as no one I want to work for wants to hire me and as complex as my availability.  The bottom line is that I want to be home when my kids walk through the door from school.  Working around that is challenging.  You might scoff and grumble that it's my own fault.  I am in a mess of my own making.  

You would be right.  

I take full responsibility for not earning an income.  I also know that when I take my kids to the movies or bowling or out for a cheap bite, I probably can't afford it.  I do it anyway.  When you don't have any family around, weekends present a challenge.  Movies fill the time that a big family dinner would in my husband's or my past.  Times change.  It's the same reason I don't let the cable lapse.  

Which brings me to the reason for this post. 

Here I am, with my kids on winter break and they shut off the cable and WiFi.
I have a choice:  Put what little cash I have left in the bank so that I can pay the bill and have it turned back on, or have a tiny bit of money and wait it out until Friday, when DH gets paid.  

Since I have enough food and crock pot recipes to get us through the week, I chose to turn the cable (and phone and WiFi) back on.  The prospect of being without, with single digit temps outside, for the last week of Christmas vacation was bleak, to say the least.  This way, at least we can use our computer, watch some movies and if friends call to invite us somewhere, they will get through, and not receive a vague message about our phone not "accepting calls" (code for:  These deadbeats haven't paid us!).

I know that I am one of the lucky ones.  I am not writing this to complain, at least, that is not my primary motivation.  I am mostly writing this so that I can see it written out so I can make it better.  If I can figure out how to make money less of an issue in the coming year, maybe I can move on to bigger and better things.  

I know that there are parts of the problem that are out of my control.  It's about taking what IS in my control and fixing it for the better.  There is no better time than a new page on the calendar to start.