Sunday, November 22, 2015

Where To Begin?

As most of you know, my middle son, Charles, has Down syndrome and my husband and I have fought to keep him at his home high school.

To say that this week has been a battle, would be an understatement.  

I know when I am defeated.

I am trying not to look at it so much as a defeat for me (it's not about me, anyway.) as a setback for Charles and the inclusion movement; but a temporary setback only, not permanent one.

Here is a short summary of what's been happening:

Charles started the school year as a full time student at his home high school; something that we had been working toward his entire school career.  

To back up a little; my husband and I know that the best placement for any kid is among their peers.  The term peers means different things to different people, though.  To us, it means the kids he has grown up, who are in our neighborhood, that also go to his home school.  To many school officials, though, (and honestly, quite a few parents) his peers are the kids with disabilities that go to the "program" at another school, twenty minutes (on a good day) from our house.

To me, sending a kid to a school not of their choosing, away from their friends, feels like a punishment.  THEY assure me that it isn't.  THEY say it's in his best interest.  So, last year, as a compromise, we sent Charles to THAT school for half the day and his home school for half.  It seemed to work out pretty well, but there were problems with it, as well.  The midday commute was a pain for him.  It made me worry, too.  My vulnerable kid (as strong as he is) commuting each day in the back seat of a cab with no security cameras, with god knows what kind of driver.  

There was also the feeling of not really belonging in either place. 

It wasn't good, but it was okay.  We knew it was temporary; that this year, we would get full inclusion at our home school and that would be the end of that, la di da, happily ever after, amen.

No.  That isn't how it happened.

I'm not exactly sure when things started going South.  It could have been the first day of school, for all I know.  Asking Charles how his day went always resulted in the same answer:  "Great!", with no details.

I asked within the first few weeks of school that we have a meeting to discuss how things were going, to nip any potential problems in the bud and build on what was working.

I didn't get that meeting until November 2nd, two and a half months after school started.  By then, I had received many, frantic calls from various teachers, school deans and other assorted school officials.

He was decorating the toilet with toilet paper.  
He was falling down (on purpose) in the crowded hallway.
He was cursing at teachers.
He was not cooperating.
He was talking about feeling stupid.
He started talking about killing himself...the day that happened, Danny and I both left work to pick him up.

He was feeling overwhelmed.  It was obvious.  It was heartbreaking.

We had a meeting.  We came up with a plan.  We felt GOOD about it.  It was going to work!

It didn't.

It really didn't.

I've described Charles as a silent film actor trying to convey his feelings and I think it's an apt description.  He cannot always tell us in words how he feels; though he HAS the words, he often doesn't get them out fast enough for the listener or in a form that the listener can understand. 

So, he punches and chases kids.  Translation:  You are cool!  Be my friend!
He tries to kiss girls in the hallway.  Translation:  I really want a girlfriend!
He falls down.  Translation:  See me!  
His words get misconstrued or misunderstood. 

He gets frustrated.
He feels like a failure.
He feels very different...and he HATES IT.

His feelings are the same as anyone else's and he understands so much more than most people give him credit for.  
His comprehension of feelings is deeper and more mature than many, if not most, adults I know.

And it breaks my heart again, because HE GETS IT.  He GETS that he is not fitting in and he doesn't know how to.

So, he falls down some more.  He acts out SOME MORE.  He get's in more and more trouble.

He turns over his desk.
He clears out a classroom.
He gets suspended.

He isn't going back to his home school this school year.

and I am sad.

I've been trying to put it into perspective.

I told Danny that I am sure that when the schools in the south were desegregating, they didn't send the class clowns in, first.

They sent the most studious, the most serious ones.  The one's that would not flinch when people spit on them or called them names or knocked their books to the floor.

They did not send in kids who would decorate the toilets with toilet paper.

I get this.

Whether it is right or wrong then OR now is beside the point.

I get that there are rules that need to be followed by everyone.  

I wish that things would have turned out differently.

We will be back.  We will try again.  We will get to the front of the bus; but someone else will have to lead us.  For now.

Friday, June 5, 2015

What Caitlyn Does With Bruce's Penis is None of My Business

I wasn't going to write about Caitlyn Jenner.  In fact, after I read this piece of perfection, I really wasn't going to write anything; because, damn.  She nailed it.  The fact that it came from a Christian woman is what sealed it for me.  

Actually, let's back up.  I almost stopped reading that post when the author at "Motherhood...Unscripted" mentions the she is a Christian woman.  I guess that statement reveals my own prejudices fairly well, doesn't it?  I never said I was perfect.  I am working on it.  Being open to some one's words is a baby step in the right direction, I think.

My biases (that I SWEAR, I am working on!) are the subject of another post (or three) another day.

Okay, so the internet practically exploded when Caitlyn Jenner revealed her new, gorgeous self in Vanity Fair.

The haters came out almost immediately with the pictures.  I won't give them credit by posting any examples, but .5 seconds of Googling will get you many.  On one hand, I get it.  I don't condone it, but I get it.  It can be frightening when people don't follow the "norm".  It makes us question reality and our own place in the world and that is really, really scary.  It's much easier to see the world in black and white and wrong versus right, than to see the infinite shades of gray.  It takes a whole lot of thinking and who has time for that?  (Sarcasm...sorry.)

Seriously, though.  Wouldn't things be much easier (for you) if people just stayed who you thought they were?  And that is precisely my point.  What YOU think about someone else might have very little or nothing at all to do with who they really are. As parents, our kids grow out of the roles we assign them.  They get tattoos and girlfriends that you won't necessarily like.  They get to decide how to live their own scary as it seems.  We did it, with varying degrees of success, and they will too.

How we react, however, is all on us.  I think it is healthy to ask why, because only in questioning can we get to understanding, or at least, some level of acceptance.  In this case, I think the first, and only question we need to ask is:  How does Caitlyn Jenner's life affect me?  I can only answer for myself.  My answer is:  Mostly, it does not.  I say mostly because she has said that she is a Republican; and Republicans with money can and DO affect my life.  

(again, this is a post for another day)

The only other way Caitlyn affects me, is that her spread in Vanity Fair gives me one more unattainable model of beauty to reach for.  It is slightly disheartening that a sixty-something, former man, can look that freaking great in a corset.  I mean, those legs!  Those breasts!  Those collarbones!  Sigh...  Then again, if I could be made up and dressed by professionals, then photographed in soft lighting by Annie Liebovitz, I would probably look pretty hot, too.  It would definitely be better than yelling at my kids or husband to stop shooting me from under my chin while trying to hide behind my tallest child.

Caitlyn, in the end, is just a human being.  She has asked to be called "she" and I respect that.  It is her body, after all.  She still has a penis.  As confusing as that may be, in the end, who cares?  She has had that penis all her life.  I can imagine she is pretty attached to it (no pun intended...really).  That penis ran across the finish line along with the rest of (eventually to be) her and collected a gold medal in the decathlon in the 1976 Summer Olympics.  Maybe it is this that has people so bothered.  How can Caitlyn be Bruce and vice-versa?  I honestly don't have the answers to that.  Caitlyn herself said in the Vanity Fair article that she still screws up her name.  So, it's okay if we are confused, too.  

It's just not okay to be mean, or belittle those who feel as she does, or others' who don't quite fit into the neat little boxes that we wish they would.  I repeat:  It is NOT okay.  If your reaction to Caitlyn is one of anger or hatred, I suggest that you take a good look at yourself and ask why?

Thursday, May 21, 2015

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?  


" 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***

Tuesday, May 12, 2015

How to Cure a Cold in Three Easy Steps

Here is my cure for the common cold:  

Step One:  

Wait until you are about three weeks into a hacking, phlemy Exorcist-sounding cough; then loudly (the better for the germ gods to hear you) announce "I should really call the doctor about this cough!"

Then, do nothing for three weeks.  Nothing includes:  Everything you normally do, at a slower pace, while whining, moaning and, occasionally, hacking up a small piece of lung.  It also includes annoying your partner to the point that he actually considers sleeping in the living room with the cats...the nine cats.

Step Two:

Take a look at yourself in the mirror and realize that you have never seen that shade of greenish/purple under your eyes, before.  Hack for approximately 37 minutes at 2 a.m.  Loudly announce to the germ gods, your entire family and the awake-and-ready-to-play cats that you SERIOUSLY need to call the doctor about this cough.  I am so serious right now.

Do nothing for another three weeks.  Nothing includes everything you normally do, at a slower pace, but with a grudging acceptance that this is your life, now.  You really don't remember life before this cough.

Step Three:

Your cough has subsided to a small, annoying tickle that only presents itself anytime you are horizontal for more than 1.5 seconds.  No problem.  You've totally got this under control; but maybe, you should call the doctor because you are pretty sure nope, definitely sure, that you are getting an ear infection.

Wait for the infection to excruciatingly work it's way out of your right ear a mere 48 hours before you go to see the most epic concert of your life THIS! RIGHT! HERE! OMGOMGOMG, and you have seen epic concerts.  At least the speakers will probably blow out your eardrum.  Problem solved.


It's just like calling Beetlejuice, only slower, less exciting and much more painful.

Wednesday, April 22, 2015


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.

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?!?'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.

Thursday, March 12, 2015

Why, Birdman? Why?

The movie Birdman made me long for NYC in the way that so many movies set there, do.  I was warmed by the sticky, Spring air and I smelled it's gritty fragrance in my olfactory memory and felt like I had gone home, though I never did actually live there.  I wanted to, but that's a long story.

There was so much to like about this movie:  Edward Norton and Michael Keaton were impeccable.  The music was fun and silly and loud and perfect.  The story was funny and real and brilliant.


You could feel that But coming, couldn't you?

There was that word:  Mongoloid.  

It was there and gone so quickly that maybe if you were not me you might have missed it; but it was there, I assure you.  

And I thought "why?".  There were so many other ways to convey the image.  So many other words to choose, but that was the one the writers went with.  I kind of crumbled inside.  It gets really tiring getting punched in the gut again and again.  Here I was, going over the old arguments in my head.  Hearing the voices of those that don't "get it".

"It's just a word"
"We didn't mean it that way"
"They aren't talking about your son"
"It's our right to say this stuff"

That last one gets me.  Effing OF COURSE it's your right to say whatever hurtful, crappy thing that comes out of your mouth.  You have every right to be a jerk.

Of course, I have the right to be hurt.  I have the right to write about it and you have the right to agree with me or dismiss me or ignore me or mock me.

I have thought about whether it might not be a language thing.  The writers are Mexican and English is not their first language.  Maybe the word they were searching for was "retard".  This does not make me feel any better.

Why does anyone need to use a person with Down syndrome as the butt of a joke?  Or even worse, as a throwaway observation in an otherwise really great movie?

There are bigger fish to fry.  I understand this.  I CARE about those bigger fish.  This is just something that gets thrown in my face again and again and as hard as I try to move past it and move on to those bigger issues, I keep getting hurled right back into this ridiculous r-word debate because it refuses to die.

Part of me wants to just give up.   Maybe it is a lost cause.  If "mongoloid", as hideous an outdated a term as could be is the new "retard", then I don't know how to fight it.  Just like "thug" is the new N-word.  There are always going to be people that want to keep those that are different over that "other" place.  I cannot reach those people.  

I can appeal to the people that think kids like mine deserve dignity and respect to speak up, though.  I can remind them that words matter.  

Wednesday, February 11, 2015

Heart Tale (re-posted from 2014) for Congenital Heart Defect Awareness Week

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.