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.

Wednesday, February 4, 2015

Porn: You're Doing it Wrong

*** disclaimer:  I WILL be talking about (whispers...) sex in this post.  Proceed at your own risk. ***

My BFFF and I were having an inbox discussion about things that we found porn-y that were not porn (ie:  things that get us hot that are not your typical bow-chicka-wow-wow things.  Further, bow-chicka-wow-wow rarely works for me, but that might be a post for another day, like, when I am 80 and I really don't give a shit about what I write or, who reads it.)

My friend says that Charlie Hunnam punching out Robert Pattinson would do it for her.  My answer to her about that is where I got this post title.  

"Porn:  You're Doing it Wrong".  

I mean, sure.  I was totally rooting for the werewolf in Twilight.  And this is coming from someone who LIKES vampires.  At least, I used to, until Hollywood got ahold of them in recent years.  Christopher Lee as Dracula?  Yes, please.  Tom Cruise as Lestat?  Dear God, no.  

And yes, I realize that Interview with the Vampire came out in 1994.  1994 IS recent when you are old. 

Maybe if that Twilight werewolf had had a smidgen of acting ability, it would have been a little porn-y for me.  Alas, the in-my-head, book version of Jacob was way hotter.  Yes, I read the books.  So, who I am to judge anything?  

I find it more-than-mildly porn-y listening to Jason Statham's Cockney sarcasm.  It doesn't hurt that he is nice to look at, though, not what you would call classically good looking.


This all started because I mentioned that they were making a Magic Mike 2.  I mean, I get that Channing Tatum is cute AND a good dancer, but I don't find male strippers, even ones that look like 

Channing Tatum

and Joe Manganiello, 

attractive.  Okay, maybe I said that wrong.  They are attractive, but I don't find stripping and dancing around in g-strings to be a turn on.  I really don't need to see that thing flapping around in my face. 


Penises are like little aliens attached to men's fronts.  They seem have minds of their own and I find that unnerving.  

There are plenty of parts of the male body that I find attractive, but that thing?  Yeah, it's just a tool, for me.  Get to work and quit waving it around.  Yes, I see it.  God.

Then, we got on the subject of another movie coming out:  Fifty Shades of Grey.  
I could never write a review as hilariously accurate as this one, so I will link to it.  I have probably read it fifty (har har!) times and it makes me cry with glee every, single, time.

Suffice it to say that I did not find those books, scratch that, BOOK, since I only got through about six chapters of the first one before I started skimming, to be a turn on, at all.  I did find them silly and annoying, though.  I kept texting the BFFF things like:  "Is she for real?"  "Oh, yes, a 21 year old virgin.  That's believable" and on and on until I finally threw the book across the room.  
Maybe I am a snob.  Maybe I am a prude (not likely, but sure.).  Maybe I just don't get the attraction.  Maybe I just don't like smarmy guys who think money can buy everything.  Maybe I don't identify with weak women.  Maybe the whole thing just went over my head and yanking a woman's tampon out is super, wildly, sexy.  


But, I doubt it.

Part of me is wondering if this is going to become like The Rocky Horror Picture Show and people are going to bring tampons to the theater to throw at the screen.  THAT, I would pay to see.  Actually, I might just start that trend.  

Anyway, if you hear me snickering in the back row, try and ignore me and remember, it's what you think that counts, not me...(weirdo).

Monday, February 2, 2015

The Spiral

I would like to share a whiny Facebook status with 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.