"...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.

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.

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.

IEP's, Meltdowns and Being the Very Best Jerk I Can Be

So, we had an IEP planned for yesterday that didn't happen.  It was -20 degrees here and school was cancelled, but the meeting was called off last Friday for reasons I can best describe as vague.

I get it.  Things happen.  Meetings get cancelled.  Life goes on.

If it hadn't been the most important meeting in my kid's school life, I probably would have been fine with the change of plans. But, it is the most important meeting in my kid's life, so I freaked out a little bit.  I may have called the coordinator a few times.  I may have left a shaky voiced message on her voicemail.  Did you ever get so angry you were actually shaking?  Yes.  That.

Anyway, this was supposed to be a high school placement meeting for my kid.  It had been planned for months.  I was anticipating it with equal parts dread and excitement.  Dread, because I was pretty certain that their offerings were not going to be exactly what we wanted and we would probably be gearing up for a fight.  Excitement because, hey!  It's not every day that your kid starts high school! 

So, you can see why pushing it off (for three months!  What?!?!?) would not make me happy.  Now, I have more time to perseverate on the whole business; ponder the endless unknowns; fight to keep the devil on my right shoulder and the Polyanna angel on my left from throttling each other.  

Now, I've had a couple of days to digest the whole business and I decided that I would write a letter to Chooch's team, outlining the way I want his high school career to look; ideas that I have been thinking about since, oh...1999. 

and here it is:

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 work sheet, 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.

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.

Sexual Olympics(?!), Life, Love and Living with these Weirdos.

This blog title is in honor of an epic autocorrect.  The words the poster meant to type were "Special Olympics" and instead got "sexual Olympics" and did not realize it until 47 comments were posted under it.  Ooops.

Anyway...

I have been "dealing" with Down syndrome for more than fourteen years.  I use the term dealing because, good or bad, it is something that needs to be dealt with, from people's attitudes, to medical issues, to school, to looking towards the future; it all needs to be dealt within the context of how Down syndrome does or does not affect all these things. Confusing?  Yes, it is.

It's a complicated journey, but, so is life.  I try and remind people of this when they think having a kid with Down syndrome is any harder than having a kid without it.  It's not harder, really, most of the time it's just life.  I really don't know any better.  

My oldest was born six weeks early.  He didn't have any issues, other than jaundice, but he had to stay in the hospital for a few days after I was released.  At the time (17 years ago) I felt a little sorry for myself that I had to leave my baby behind, pump breast milk for his feedings and schlep back and forth to the hospital.  In the scheme of things, I now realize that this was a small thing in comparison to what others go through, but at the time, as a young, new mom, it felt monumental.

After those first few trying and jaundiced weeks, our baby thrived and became, to us, the most brilliant and adorable child ever conceived.  

When I was pregnant with my Charles, my oldest was a sweet and precocious two year old.  Sometime in those nine months that I was waiting for Charles, we noticed a change in his (OS's) behavior.  He started obsessing over bathrooms and bathroom fixtures.  Maybe this was really not that strange, since he was on the verge of potty training, but it was more than interest.  He was manic about it.  He HAD to explore every bathroom, every place we went. More than once, I had to drag him out of someones shower. 

He also became worried about people leaving and had to say goodbye, four, five, twenty seven times before they actually walked out the door.  Then, he would say "I have to blow you kisses!" and it sounds cute, but he would be seriously panicking and would go ballistic if you did not return the required number of kisses to him.  It was exhausting to watch and worrisome, of course, because here I was, thinking I had the perfect child, pregnant with the next child (and I had no idea what was in store with this one, yet) and here he was acting all weird!  I just kept thinking "what the hell?".  I spent every day with him.  I rarely left him, even in the hands of his capable and loving dad and I can count on one hand the number of times we had babysitters when he was little.  

He had no reason to fear me leaving, he saw his dad every day for several hours before bed, we had a consistent routine, his nap times and bedtimes were strictly observed.  I felt like we were doing everything right and I struggled with his irrational behaviors.  If I had just realized back then that those behaviors were perfectly rational for a kid on the autism spectrum, I may have worried less.  

Once we had some answers for him, it became easier to manage, but it would be almost four years, many doctors appointments and IEP's before we'd get a "maybe it could be Asperger's" diagnosis.  Oh, the subtle nuances of neurological spectrum.  Sigh.  In the meantime, OS had been kicked out of first grade for kicking and threatening another classmate and spitting at his teacher.  Huge Freaking Sigh.  

We were still in the early stages of this struggle with OS when we got the news that Charles, our second boy, would be born with Down syndrome.  Actually, this news came in stages.  And all the stages were scary.  The first stage was the news that he had a serious heart condition; a complete A.V. Canal defect.  Imagine a heart with two big chambers instead of four and that's basically what it means.  So, heart surgery was in this baby's future, for sure.  

What wasn't sure at first was whether or not he had Down syndrome.  They suspected he did, but we wouldn't know unless we had an amniocentesis.  

A few weeks later, we had those results and Trisomy 21 it was.  

At this point, we already knew that we were having a boy and we had already named him Charles.  He was ours.  This little bundle of broken heart pieces was on his way and we had to prepare.

I'm not going to say that it was all rainbows and unicorns.  

No.  There were plenty of tears shed.  There was plenty of extra worry now that OS was having issues AND we were having a baby that was going to need extra love and attention.

I think we had one pretty rotten weekend, maybe a few days more than that, but not much.  One day, a few days after the news, we went out to lunch.  We were sitting down to eat when in walks a couple with their son.  He looked to be a teenager and he had Down syndrome.  My husband and I looked at each other and we both knew it would be okay.  They looked so normal.  They didn't look depressed or angry or unhappy.  They just looked like a happy family.  That was all we wanted to be.

I don't think I cried about the diagnosis after that.  Sure, I worried.  I especially worried about his heart, because that all seemed so scary.  Looking back on it all these years later, I wish I could tell myself not to be scared, that someday, that unborn kid would be a silly, strong, John Cena and Michael Jackson imitating ball of energy.  That he would make us laugh.  That he would have friends.  That we would be happy.  Not happy in spite of Charles having Down syndrome, or OS having Autism; just happy because we are a family and we love each other.

After all the craziness that surrounded us in those early day with Charles and pretty much the day after I finally zipped up my pre-pregnancy jeans, we got another surprise in the form of a positive pregnancy test.  Baby number three was due eleven months after Charles' birthday.

Again, I was scared.  Scared to go through all of that (while it was still very fresh in my mind!) again.  Scared of being broke.  Scared of not being able to give any of my kids the attention they needed.  Scared of having to get a minivan!  And yet, here we are 14 years later, with three teen aged sons, the youngest of which is my Charles' best friend and champion.  He is his buddy, his occasional interpreter, his roommate and his school peer.  I can't imagine a better little (much taller) brother for Charles than E.

I guess what I am trying to get at (in a really rambly and incomprehensible way), is that we have our challenges.  My kids are not the easy, drop them off at school and don't worry about it, kind of kids.  My kids all have Individualized Education Plans (IEP's).  My oldest and youngest are both on the Autism spectrum and have very different issues.  It makes life interesting.  Sometimes, it makes life harder, but only on the bad days.  

Who doesn't have those?  

We are as "normal" a family as any other, especially if normal means making big weekend breakfasts, driving to see relatives every summer, going to sporting events and concerts, watching movies, arguing and laughing, then we are a typical bunch.  I've often said that the only real difference I can see between my family and others is that our lows might be lower, but our highs are higher.  They just are.  It all balances out in the end.

Here it is.  It's life with kids.  You take the good with the bad, the weird with the wonderful.  Down syndrome or Autism doesn't change what makes being a family, a family; how could it?

Aggravation

So, a woman sits down next to Charles and me at the beach.  Charles was digging in the sand and making walls and she said " Wow, he's really doing a great job, there!"  I smiled and said something like "uh huh" and she kept going.  "How old is he?" "Fourteen", I answered.

I was already annoyed by fact that she was sitting two feet away from him but addressed her questions to me.  I could see that he was also bothered by her.  

Her next question was "What's his name?"  So, I said "Charles, what's your name?".  He didn't answer and his body language was "JUST GET THE HELL AWAY FROM ME, CRAZY WOMAN!"

So, obviously oblivious to Charles' aggravation, she says to me "Does he speak?".

I gave her a look like "Are you freaking kidding me?"  Then, I gave a forced laugh and said that he did.  In my head I was thinking "Yeah, he talks, but not to insane strangers who approach him on the beach!"

At this point, Charles got up and headed for the end of the dock, where he jumped in.  He was clearly done with this idiot.  But, she wasn't.  She watched him jump in and asked me "Can he swim?"

Um, no.  No, he can't swim.  I'm pretty sure the lifeguards will save him, though.  I'm just going to casually observe from fifty yards away.

ARE YOU KIDDING ME PSYCHO LADY?

Otherwise, it was a lovely day.

Ten Percent? (Updated 4/15/15 to include new information)

The original is copied from a post I did on Facebook four years ago.  I have edited it to include up to date information.  New information in bold text, below. ~ ADH

I read a statistic the other day that made me very sad. 90% of pregnant women who receive a diagnosis of Down Syndrome for their fetuses choose to abort. It’s a statistic that I had read before, but, now it hurt even more because of the chance that soon, that number may reach almost 100% because of earlier, less invasive testing and very little hands on knowledge of Down Syndrome on the part of doctors.


(New information has come to light and I think it is very important to share it.  Please see the studies here and here.   Brian Skotko puts the number at 74%...and that 74% only applies to pregnancies where the mother has chosen to have DIAGNOSTIC testing done.  I emphasize that word because the early blood tests are not diagnostic; they only give a statistical number.  Women with elevated risk according to these tests can choose to have a diagnostic test, such as chorionic villus sampling or amniocentesis done to get a true diagnosis.

Therefore, it is FALSE to claim that 90% of babies with Down syndrome are not born (which seems to be the way people, including myself in the past, incorrectly interpret things).  The numbers vary depending on what studies you look at, but the bottom line is that 90% is nowhere near correct and further, when you look at the actual percentage of terminations in ALL Down syndrome pregnancies, not just that small number that have been subjected to diagnostic testing, the number is somewhere around 30%.  What a tremendous difference!  And what could this potentially mean to the woman getting this information today?  For me, it means the difference between feeling a part of a very small minority versus a rather large majority.

I think it is very important that these numbers be shared far and wide.

Here is a link to another post by Mark Leach who explains why this information is not all rainbows and unicorns.  He also breaks down the numbers really well; in a way even a math-challenged person like myself can (sort of) understand:  Mark's post.

It still remains to be seen what impact the early blood tests will have on these numbers, as more women could potentially opt for additional, diagnostic testing, but I find it heartening to know that 90% is not a true number, nor even close to it.)

Before you think you know where I am going with this, let me assure you that I am very pro-choice. I have no problem with abortion in general and I feel that prenatal testing is very helpful. It’s a good idea to know something about your child before they are born, just to eliminate a few of the unknowns, which are many.

The problem arises when you can learn so much about this potential life that it becomes nothing more than a series of cells; some coveted and some not-so-much. In some parts of the world, it is a defect to be born female. In some places, women have to be imported because the shortage is so great due to selectively eliminating the “wrong” sex prenatally. 

Let me repeat: in some places it is a defect to be born female.

In China, eugenics have been practiced by law since 1995. “Unfit” couples are forced into sterilization before they are allowed to marry and abortion due to “undesirable” attributes in a fetus are sky high. Proponents of China’s eugenics law state that the less money you have to spend on these “defective individuals”, the more there will be for those who can better “contribute”. When did love and sex and procreation and the messy human experience become all about money?

Does a quest for perfection make a society better? Did it make the Nazis better? Or do we look at them today as the absolute worst in mankind?

The problem with perfection is that everyone has a different opinion of what “perfect” is. I think Jason Statham is the height of perfection in a man; witty, charming, sexy, oh, I could go on. But, Jason Statham is also balding and kind of short. Does this make him less perfect? Not, in my eyes, it doesn’t.

I find men with pear shaped hips unattractive; ditto, for lack of a strong chin. But, if every man looked like either The Rock or Jason Statham, (both perfect men as far as I am concerned) how would I know what “attractive” means to me?

I have a twelve year old son with Down Syndrome. Every time I read one of these statistics, it brings me back to my own decisions. I honestly ask myself “if I knew then, what I know now, would I change anything?” and I honestly answer “Hell, if I knew then what I know now, I might not have any kids at all!” and I would be telling the truth.

Kids are messy. They rob you of your youth, your looks, precious sleep and that space that you were saving for your library. They puke on your leather couch. They fart in front of people you want to impress. They burp loudly at the quietest moment in the movie, in a crowded theater. Boys pee near the toilet and when it does actually reach the bowl, it usually hits the seat first; the seat you sit on in the middle of the night without looking…GAH!!!

Kids are expensive! Has anyone seen how much it costs to fit two preteen and one teenaged boy with shoes? Holy crap! Forget about that romantic Greek isle cruise you’ve been saving for; it’s all going to go to Chuck Taylor‘s. Parents to be? Forget about college and start buying shoes on sale now!!! Believe me, those Chuck Taylor’s will still be in style and if they aren’t, it will be a great lesson in managing disappointment.

Kids also fill you with pride. Sometimes that pride comes from finally taking off the training wheels so they can wobble (on their own!) down the sidewalk. Sometimes it comes in the form of a letter from a teacher saying that your child is in the school spelling bee. Sometimes it is in the form of a wrestling pin or a game winning basket or goal. And sometimes, it is in the form of an understandable word at the age of four or taking a few steps at the age of three. For me, it comes, when the kids at school greet my Charles with a hug or a high five or a “what’s up, dude?”. It often comes at Special Olympics events where I cannot contain the happy tears.

Pride, like beauty, is in the eye of the beholder.

"People often say that 'beauty is in the eye of the beholder,' and I say that the most liberating thing about beauty is realizing that you are the beholder. This empowers us to find beauty in places where others have not dared to look, including inside ourselves."
 ~ Salma Hayek

I don't want to hear the argument about “eliminating suffering”. Who are you to judge? My kid isn’t suffering; not by a long shot. He is loved and loves life. He suffers no more or less than any other middle class kid in the U.S.

I guess my point is this: I don’t think that because something is scary, or messy, or overwhelming, or expensive, that it should be categorically eliminated. I don’t want to live in a world where difference is eliminated. If it were, we would be missing out on 90% of what makes life, life. If we bypass struggles and suffering, how will we know when we’ve reached our goals? And what beauty will we miss along the way?

Charles is now almost 16, in high school and still loves kitty cats, along with lifting weights and talking about girls.

Life With Charles: Volume 241

I checked the toilet seat like I usually do before I sit.  In a houseful of boys, it's a bad idea to sit without looking.  There was no pee this time, but when I looked closer...hair; lots of it.  Sigh.  I must have missed the bald spot under the cap Charles chose today.  I will never understand his need to butcher his thick hair.  

Sigh...

Wednesday is my early day at work.  I need to get all my stuff done and get the boys out the door by 7:40.  I do all these silly things to save time, like line up all my toiletries on the sink.  I'm not sure it actually saves time, but it makes me feel less stressed getting out the door.  

The other day, I found myself with a few extra minutes, so I decided to save my shower for after I dropped the boys off.  I had about 20 minutes, which is plenty for me if I have all my stuff together.  

When I got into the bathroom, I noticed my deodorant missing.  Sigh... It took me all of half a second to realize that Charles had hidden it on me.  He loves to hide things:  my toothbrush, his brothers' electronics, cats...

Double sigh...

It took me ten of my short twenty minutes to locate the missing deodorant, which was not in any of the usual hiding places.  Cursing the entire time, I did manage to get out the door on time.  I had to laugh at myself in the end, wasting all that time lining things up only to spend ten minutes chasing down a stick of deodorant.

Last night I was trying to Skype with my cousin.  In between screaming for quiet (an oxymoron if I ever heard one) and trying to keep the camera from shooting me directly under my chins, we did manage to get a few words in.  I only fear that the last image burned in my poor cousin's brain is Chooch in his terrifying clown mask jumping off the chair into the camera.

Such is life with Charles.