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

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

Long story short, I stayed for Fran Lebowitz.

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

And I agree.  

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

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

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

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

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

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

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

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.

But, 

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 there...in 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.  

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.

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.  

An ode to my BFFFF

Oh, yes.  All the F's have meaning.  :)

We met about eleven years ago.

Our kids were attending the same preschool and after a few months of fawning over the adorable, blue eyed and blond haired kid with Down syndrome in my son, Evan's class, I decided that I would seek out his mom when I got the chance.

The chance came when Evan was turning four and we decided to have a party for him.  Since Nick was in his class (and I was in love with him), he got an invitation.

And his mom called me up, clearly emotional at the invite.  It turned out that it was his first invitation to a party and it was a pretty big deal.  Most parents of kids with obvious differences would probably agree.  We are all pretty sensitive when it comes to our kids being included and when it happens, we bawl.

One of the things I have come to realize about being a parent of a kid with Down syndrome is that when Charles was born, I was immediately given membership to a very cool and exclusive club.  I'm not saying all the members are awesome.  All Ds parents are not created equally.  We are not all "special" or "patient" or even "nice"; but, I have met some very, very cool people because of it.

Christy is one of these cool people.

So, we had our first phone conversation and by the time it was over, I knew that we would be at least BFF's if not BFFFF's.

I knew this because in the first five minutes I had already told her about my love affair with Dave Matthews and how I didn't want to actually, physically stalk him because I loved him so much that I didn't want to mess up his life.

Yes, I realize that this confession makes me sound like a lunatic.  (and just as a side note, I have calmed down over Dave Matthews, though I would never kick him out of bed turn down an invitation from him to play Canasta.  Jon Seda, on the other hand)...ahem...anyway...

I think the fact that she did not scream "WRONG NUMBER" and hang up on me, but patiently listened and then confessed her own super weird celebrity love affair fantasy cemented our friendship like crazy glue sticks to fingertips.

We were bonded for life.

I am grateful to her for so many reasons.  Here are a few:

1. I am kind of a shitty friend.  I am super demanding and I have very, very thin skin.  She lets me rant like a two year old who dropped her ice cream and patiently waits for me to stop my temper tantrum so I can apologize and we can move on.
2. Because of number 1, I have very few, real friends.  She is the kind of person that has people lining up to be her BFFFF and the fact that she gets me makes me feel pretty good.  
3. Even if I am not her number one BFFFF, she never lets on.  I am sure she reassures those other friends that they are number one with her AND THAT IS OKAY WITH ME.  But, I know the truth <<< wink >>>
4. She has my back, always.
5. She is incredibly funny and she has started her own blog.  I promised I would try not to be jealous even though she out-funny-ed me in the first day.  Remember number 1?  Yeah...

Here is the link to her super funny, new blog.  Please check it out, but don't leave me, okay?  I am ridiculously competitive and I have huge abandonment issues...

Mitochondria

It has been too long since I have written a post.  I have been consumed by a bunch of crap, not the least of which is getting my middle son placed at his home high school.  

Here is how it is going so far, in a nutshell:

• Have first meeting cancelled
• Freak out
• Finally have meeting three months later
• Find out the "team" has no intention of letting my kid attend his school
• Fake smiles all around
• Virtual head pats for the adorable boy who brought his own notes to advocate for himself
• Mom ends meeting by admonishing the team for their lack of creativity

Before this meeting I was pretty sure that the "team" besides me and my husband were not going to be keen on Charles attending his home school, but I maintained the optimism that comes from knowing that you are right and they are wrong.

This was so, so stupid of me.

Here is the letter I handed out to the group before the meeting:

Dear Team,

This is my son, Charles.  We are here to find the best possible placement for him.  Before we do that, however, I want to remind you that he is not just a set of strengths and weaknesses.  He is a teenager, a much-loved son and brother, a good friend and a bundle of wit and sarcasm.  

He wants what all of us want out of life:  To love and be loved, to have friends and to be included.  That last part is tricky, because it can't really be quantified.  I am afraid that sometimes, the human being gets lost in the graphs and percentiles.  I am afraid that for some, my Charles is a challenge at best and a problem at worst.

Numbers are not my son's best friend, whether they are problems on a math worksheet, IQ points or figures on a percentile chart.  I realize that teaching involves testing and reporting, but I urge you all to look beyond that towards what really makes a life:  Being accepted and included.

Inclusion is not a pie in the sky fantasy, it is the only way to ensure that my child's life is seen as having as much value as those of his typical peers.  If you think I am exaggerating, consider what happens when people are segregated from society.  

Times have changed for people with Down syndrome, but until stories of prom kings and queens and team managers are more than feel good anecdotes, people like my son will not be fully participating members of society and that is what I want for my son.  My husband and I want full participation in life (not just school) for Charles and every child who comes after him.

I look forward to the day Charles walks across the stage in his cap and gown, ready to accept his certificate and to step into a world that is more accepting and inclusive than it is today, because of the work of teams like this.

Thank you.

(Charles' parents)

Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.  

~ Chris Burke

And they loved it. They thanked me for writing it. They had real tears in their eyes. And I thought: YES! They get it! It will be fine!!!

And then, Charles read his prepared notes; just a little bit about himself.

AND THEY ATE IT UP!!!

SO CUTE!!!

SO GREAT THAT HE IS SPEAKING ON HIS OWN BEHALF!!!

I THOUGHT SOMEONE MIGHT PEE THEMSELVES FROM SHEER GIDDINESS!!!

No one did, but they all beamed at Charles, like they were watching a monkey play the piano or a squirrel water ski.  

THEYCOULDN'TBELIEVEITWASHAPPENING!!!

And I was thinking, "Really? You know people with Down syndrome have thoughts, right? They are not smiling dummies. They have independent thoughts and likes and dislikes and dreams for themselves."

I think somewhere along the line, they missed that memo. They were so busy putting kids "like these" in a little box, that they couldn't see all the stuff that made them individuals.

The box is called Life Skills class.

After Charles spoke and after we talked about his current "levels" the meeting changed from 

this

 

to this.

They had to break us.

They had to break us and fold us into the little Life Skills box to make their lives easier.

I want to know who coined the term Life Skills as the name of a legitimate class. I get it for kids who grow up in institutions (horrible) and might need to learn how to navigate life, but kids with families? Isn't it my job as a mom to teach my kids how to be safe and read a recipe and navigate a grocery store? Seriously, shopping at a grocery store is a big part of the curriculum, because they go there once a week.

ARE YOU KIDDING ME?!?!?

Frankly, I find it insulting that this is the bar that has been set for my kid's high school career.  

"you know, we are gonna teach him about life and stuff; mostly, about buying Wonder bread and ordering at McDonald's".

What really stood out to me in the meeting (one of the things, anyway) is that they had a hard time wrapping their brains around how they would teach Charles about mitochondria in Biology.

I am not kidding.

Um, how about don't worry about it?

How about give the basics?

How about using the model from the science they teach in the life skills class as a start? ***headdesk***

Raise your hand if you have needed to know about mitochondria (unless you are a Biology teacher) in your adult life...hmmm, I thought so.

So, we have another meeting tomorrow and knowing what I know now, I am not overly confident that it will go well. My kid is not even coming, because I don't want him to hear (however nuanced and nicely sounding they put it) that he is not wanted at his own school.

I still know that I am right and my husband is 100% on board with me. That helps. But, knowing I am right and putting my kid out there are two different things. It is absolutely in their power to make things a living hell for him. And no one outside my little band of true believers will ever know that it was them that failed my kid and not the other way around. And who knows what kind of torment my kid will have to deal with if they don't give him appropriate support?

I believe inclusion is the only way forward. It's the only way my kid will ever be seen as an equal participant in life's journey. I also know that I will not sacrifice my kid on the alter of inclusion, either. I won't make him a martyr.

If I feel that they are setting him up to fail, I will relent and put him in the "other" class, or, I might just pull him out altogether and start a homeschool co-op with some of the other parents who are dealing with this.

It really shouldn't be this hard.

Here is the letter I wrote to keep myself on track at tomorrow's meeting. Please wish us luck.

Here we are again talking about Charles’ placement.  I appreciate this team giving thought to what my husband and I have said previously.  I realize that you don’t all necessarily understand why we are pushing so hard for inclusion.  The bottom line is simple:  It is Charles’ right to be educated amongst his peers.  As I have said before, it is not inclusion if it happens “somewhere else”, no matter how inclusive that environment may be.  Inclusion, to really, really work for Charles’ future needs to happen at his home school.  I understand that it will take some creativity on the part of this team, but more importantly, it will take open minds and hearts.  We are not alone in this thinking.  I know of many other parents in this district who want and are pushing for the same, simple thing.  

Yes, Charles will need supports and modifications, some of which will be major and ongoing.  He will need a modified curriculum, modified grading and supports with which to implement them.  Modified grading is not the same as “merit grading”.  Grading according to Charles’ progress on his IEP is not a ribbon for “trying”, but progress, which is all we ask for.  

As far as Algebra and Science go, there are ways to make these topics accessible.  If they are teaching a version of them in the self contained class at (the other school), they can be taught to Charles; again, this would just be a modification of the curriculum and it is a modification that already exists.  The tools are already out there in the district.  They just need to be implemented here at (the home school).

These many modifications will require a strong, one on one para-professional to implement.  Having a para would serve two very important functions:  Charles will have help and support for the classroom work and he will have someone to help him navigate a large school during passing periods and during less supervised time, like in gym and during lunch.  It will also alleviate some of the stress of the “unknown” in this inclusion process.  

Another benefit of having a para with Charles would be giving him the option of leaving a class and working in the library for a time, or taking a sensory break when things get overwhelming.  This will be paramount to Charles’ success.

While all of this sounds great and perfectly doable, I realize that there will be a learning curve for everyone involved.  My only real fear for Charles is the resistance to his being there.  Whether it be fear, or prejudice or outright hostility, I harbor no illusions that this transition will happen without a few issues.  Once Charles leaves my care and is in the school setting, it is up to the professionals present and in the larger school to take Charles’ success seriously; not just his academics, but his social/emotional wellbeing.

Let’s make this work.  Let’s not just “try” it, with an eye on the (other) program as our fall back.  Let’s just make it work for Charles and for the next child whose only wish is to remain with his friends and brothers where he belongs.  Let’s make (the home school) a model; not just for grades and academic achievement, but for inclusion as well.

Amy Dietrich Hernandez

*** UPDATE*** via my Facebook status

Success! They saw how passionate we were about keeping Charles a (home school mascot) and he will be one! We've worked out a collaborative program with (other school) where he will start his day there, get a few of the harder subjects in the morning, then spend the afternoon at (home high school) every day. We will push for full time as the years go on, but for now, this is the best of both worlds: more support in areas where he needs it and VISIBILITY at his home school. Whooo!

Who Needs Rules?

My son, Charles has no use for arbitrary rules.  Real rules, like safety-type rules, he is mostly down with.  At least, the ones he agrees with.  The fact that he cannot drive a car because he:  

a)  is too young to get a license
b)  is unable to pass the written test
and 
c)  has 20/375 vision

does not sit well with him.  If there is a way to get a license, then, by god, he will get one with his will.

Thankfully, I have another year or so to cross that bridge (and maybe move to Wyoming, where his driving probably won't kill anyone).

Anyway, back to Mom's Arbitrary Rules and the reason for this post. We have the same fight, every day over what shelf the acne treatment pads should go on.

I know.  It sounds silly even as I type it.

Here's the thing, though.  IT DRIVES ME CRAZY!  I have them put away, neatly, on the lower shelf behind the cabinet door.  Invariably, the next time I go into the bathroom, they are on the top of the cabinet.  Every time.

My house is not haunted.

I don't have little demons moving things around, trying to freak me out.  Even if I did, I would hope they would do something a bit more interesting than move Charles' acne medicine.

No, this is Charles telling me exactly what he thinks of my stupid rules.  Because, really?  Is anyone going to die if the stupid acne pads are on top of the cabinet?  No.  Mom is just going to go a little bit crazier.  And isn't that the end game?  Making mom crazier?  Because crazy mom is HILARIOUS!

I used to think so, but now I am not so sure.

I think after awhile, after so many years of people telling you that your shoes go on the other feet, that the dirty plates go on the right side of the sink AFTER THEY ARE RINSED, that you CANNOT DRIVE MOM'S CAR, you kind of need to rebel a little.

I want my kid to buck the system.  True, that he is bucking MY system kind of makes me nuts, but do I really want a kid that is going to just follow along with any old thing any random person "in authority" says?  

No.

I want my kid to push back against those who will tell him what he can and cannot do without giving him the why.  Because some of those whys are arbitrary.  

"It's the way things are done"  is arbitrary.  It's also a cop out.

So, buck that system, my Charles.  I'll be right behind you, with bail money if need be.

Okay, Denmark...You've Got My Attention

I once spent the day in Denmark.  Well, I guess it was two days, one day coming and one day going.  I was trying to get from Helsinki to Lausanne, Switzerland and I had to take a bunch of boats and trains.  It was a long time ago, so excuse the sketchy details.  The only thing that I really remember is being pretty well broke by the time I got to Switzerland.  I ate a lot of leftover bread on that trip.  Ah, youth!

Anyway, Denmark has been on my mind, lately.  Even before the news of the unfortunate giraffe, Marius, reached me, I had been thinking about what kind of society they had there.  Sure, it is a happy society (see this survey) and maybe that is part of what scares me about it.  As soon as I heard about Marius I (for now it appears there is a Marius II; note to self:  Don't be a giraffe named Marius in Denmark), my mind went to thoughts of the Down syndrome population in that country.  In Denmark, like most Western countries, Down syndrome births are dwindling (check this out).

I don't want to get into the whole subject with much depth here, mostly because I don't want this post to go on for days.  Suffice it to say that I have a problem with people thinking that this is a great thing.  It really bothers me that some people think it's a great thing; mostly, because I have a son and friends and other people I care about that have Down syndrome and I think a world without them would be decidedly more...sad.

So, I just kind of wonder what kind of great society promotes the killing off of those who are seen as unneeded or unwanted or less-than?  

What does it say, when a zoo helps to create, names, raises and then decides to kill a young giraffe...oh, and cut it up in front of cameras for the kids to watch.  Good times!  But, seriously, what does this say about what life means to these people?  Life is good only if it directly benefits (read:  makes money for) others?  Life is only good if you are born the right height/weight/sex/color/creed/national origin/sexual orientation/with the right number of chromosomes?  

What did this giraffe do to deserve to be fed to the lions he shared the zoo with?  

I've read some of the comments about the subject and many say things along the lines of "giraffes are lions natural prey, anyway" and "you would just have to kill a cow instead, so what is the difference?".  I can kind of see where they are coming from.  After all, a cow's life is as important to that cow as Marius' life is/was to him; but there is something about breeding this animal, wanting him until he was deemed unnecessary, then killing him that is deeply disturbing.  And it reminds me of the free, prenatal screening for T-21 that Denmark offers.  And it feels icky.  And I get that a giraffe is not a person.  It still feels icky.

If you don't love a person with Down syndrome, maybe you don't understand what I am saying.  Maybe you think I am crazy.  Maybe YOU think it's a great thing to eliminate Down syndrome and with it, part of what makes my kid MY KID.  I would ask you to keep an open mind, though and hear me out to the end.  

Do you know someone with Autism (prenatal test)?  Do you know someone who is gay?  Because guess what?  With all the genome testing that is going on, prenatal tests are coming for those conditions as well, all in the name of "advancing human health".  What does it mean for us as human beings to choose to eliminate traits that are a natural part of the human condition; not diseases, not conditions incompatible with life, but traits that could be seen as less than desirable?

And even if diseases like cancer and heart disease and schizophrenia could be diagnosed before birth, what would we do about it?  Since just about everyone will get one or the other at some point in their lives, COULD we do anything about it?  What if you found out at age twenty that sometime before you turned fifty you would have a massive heart attack?  It's quite likely, actually; much more likely than being born with Trisomy 21.  Would you want to be shot in the head to spare you the misery?  Or would you want to fight for your life?  

Human beings are beautiful because of their differences from one another.  One race, hair color, orientation or neurology is not necessarily better than another.  Should we, who have apparently "won" the neurological lottery, have control over the fate of those who haven't?  And if so, are we conducting our own, decidedly less messy, though no less troubling, form of Aktion T-4?  

I worry about where we are headed.  I worry that we don't learn our history lessons.  I worry that in our quest to become "better", we will wind up bereft. 

Hard to Find the Words

You can probably tell by the fly by the seat of my brain writing style that I usually just plow right ahead with whatever I am thinking about.  Today, I am having trouble.

I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had.  I might never get to that point.  I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.

Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome.  I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.  

I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered.  The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons.  I can understand needing a place to work through their feelings.

I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis.  I'm just acknowledging that it happens.  I don't wish to drag these women through the mud.  There are so many complex issues to the dilemma that factor in:  Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it.  I really do.

That a woman might make this decision at all is not what bothered me.  At least, that's only a small part of it.  It does bother me because I take it as a reflection of how people feel about my living, breathing kid.  I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her.  It isn't about me and I don't wish to make it about me.  It's just hard to separate, sometimes.  Her body, her decision.  I understand and agree that this is the way it should and must be.

What really bothered me was reading how some of these "procedures" take place.  I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies.  Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms.  Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.

It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process.  They talked about being sad over their "lost" babies.

This was where I began to lose it.


I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive.  Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?  

I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.

I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.  

I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision.  I completely understand this logic if a fetus' condition is incompatible with life.  There are plenty of complications that fall into this category, but Down syndrome is not one of them.  Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long.  But most of these issues are correctable.  With intervention, the vast majority of babies born with T-21 will not just live, but thrive.

There is also plenty of debate about how much intervention is too much and I completely understand it.  I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator.  Some were three and four months old.  It is worth noting that none of them had Down syndrome.  One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born.  It was truly the saddest baby smile I have ever witnessed.  I want to cry thinking about it now, even fourteen years later.  I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles.  Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.

I often wonder what happened to him.  

All this begs the question:  At what point does it become worth the fight?  Understandably, it is different for everyone.  I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair.  I think about the people I know who are dependent on various interventions to live.  I wonder at what point they would feel like their lives were not worth living.  Mostly, I see people who are at peace with their circumstances.  Whether you want these circumstances for yourself or your child is mostly irrelevant.  Most of us will never know what it feels like to be in those shoes.

So, what of these parents who decide to let their children go?  At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred.  How DARE they write about how sad they were!!!  THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!!  FUCK THEIR SADNESS!!!  

Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me.  It felt like killing.  I began questioning my own pro-choice views.  I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat.  I have always found late term abortions troubling, but conceded that they needed to be legal.  I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe.  Yes, it's an option, but not one that I would want forced on anyone.  There are plenty of kids languishing in the system, already.

In the spirit of full disclosure, I had an abortion myself, in my early twenties.  I don't regret it and I don't feel guilty about it.  The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy.  I might have married that other guy.  In my view, I saved the beautiful family I have now by sacrificing those cells years ago.  Maybe you will call me a hypocrite.  Who am I to judge anyone?  I also have the benefit of hindsight working for me.  Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury.  All they can see is NOW and the future is a scary unknown.  I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions.  It's not my place to judge or question them.  I can only speak about my own feelings.

I don't know where to draw the line for anyone else.  It's not my right to draw that line.  All I know is that I am troubled by this discovery.  I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings.  Hindsight might give us blinders.

I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life.  She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did.  Again, hindsight in action.  Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.

So, what is the difference?  You might be wondering.  The difference is that my kid and kids like him don't suffer from Down syndrome.  They are living and thriving into their 50's, 60's and 70's.  And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes.  And I am trying, mightily, to put myself in yours.  I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.

I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement.  I believe in choice.  I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.

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.