Tuesday, October 30, 2012

Pumpkin Patch Ramblings

I'm so God damn sick of talking about Down syndrome.

I kept thinking today about what I should blog about.  What is the one thing that I feel people should know about Down syndrome?

The only thing I kept thinking is that I wish everyone could see how NORMAL our lives are, how NORMAL Kelly is.

Oh, sure, we are extraordinary.  As a family.  Individually.  But that has nothing to do with Down syndrome and everything to do with how much we rock at life.

We've had some crazy shit thrown at us and we always seem to come out on top.  We're rockstars like that.  But, again, that's nothing to do with Down syndrome.

Kelly is, honestly, one of the cutest kids I've ever seen.  His personality draws people in.  There's something really magical about the happiness he exudes and they way in which he can stir happiness in others.

But that has nothing to do with Down syndrome.  That's just Kelly.

So to say that Kelly is who he is because of Down syndrome is to say Iryna is the way she is because she only has 46 chromosomes.  Our genetic make up is only 50% of us.  The rest is what we make of it.

Most of us will look at the world and see the same damn thing.  But it is the special few, the gifted, that will grasp the meaning of life in a whole different way, illuminating the unusual, highlighting the misunderstood and under appreciated.   These people are our gifts.

That's not to say that Down syndrome is to be ignored.  It is a major part of Kelly's life.  It always will be.  Its impact will be felt by all of us.  Every day.  Kelly may need help from his family for the rest of his life.  But that hardly makes him any different than the rest of us.

We can't carry the burden of life on one set of shoulders.  It's just not possible.  That's the point of coming together.  As friends.  As lovers.  As life partners.  Building a bond, a family, a community.

I love what Mike and I have built together.  I love the imperfections and the struggles.  I love even the bitter tears shed... and the sweet tears of pure joy.  Life is good.

Monday, October 29, 2012

The Cure

One of the things you may read when looking up Down syndrome is that it is incurable.

Yes, Down syndrome, at this point is incurable.

There has been much talk of the new early detection prenatal test being the "cure" to Down syndrome.  Denmark has made it a goal to become the world's first Down syndrome free country.  But, as I talked about before, termination isn't the cure.  Honestly, I'm not even sure that a "cure" should be a goal toward which we strive.  In addition to the negative aspects of Down syndrome, there are some positives.  So preventing it, or curing it -- which would be the only real cure, isn't really something I would like to see happen.

Treating the disabilities that come along with it, though, is not only desirable, it's attainable.

Already we know a lot about how the brain works, but learning more about how to make these kids' brains work more efficiently could open the entire world to them.  It wasn't too long ago that people with Down syndrome were considered to be unteachable.  No one bothered to teach them to read because it was believed they would never learn.  We now know that reading is one of their greatest strengths.

There are scientific trials being done on mice that have been altered to have cognitive disabilities that resemble Down syndrome.  These mice are, by themselves, an amazing, exciting breakthrough.  Before, it wasn't possible to do much testing.

They're testing not only pharmaceuticals, but vitamins and fish oil with a variety of successes... and failures.  I am confident that by the time Kelly reaches adulthood, he will be on some type of a cognitive therapy regime.

In the meantime, we give Kelly vitamins that have been specially formulated for people with Down syndrome.  He gets fish oil and extra vitamin D.  I'll likely add in gingko and curcumin when he gets a little older.  I am going to get serious with his reading program and, as I stated in a previous post, I am encouraging a love of portrait photographs.  He's a smart kid, a great imitator, has an inquisitive nature and a desire to learn.

My goal with all this is to give him an independent life.  I have no desire to change Kelly on a fundamental level.  My desire is just to see him happy, independent, and healthy.  The same as for my other three children.

And that's the cure.

Sunday, October 28, 2012

Play to your Strengths, Kid

I promised 31 blog posts in the month of October, Down syndrome awareness month, and God damn it, there will be 31 blog posts.  

A lot is known about the negative aspects of Down syndrome.  Everyone knows that kids with Down syndrome have learning difficulties and delayed development.  It's the focal point of the disorder, really.  I'd be a liar if I told you we don't focus on that aspect of Down syndrome.  Any parent of a child with Down syndrome does.  It's part and parcel.  

Last week, Kelly had speech therapy, physical therapy, and occupational therapy evaluations.  He is only slightly delayed in speech which is awesome considering he spent the greater part of the summer and this fall with clogged ears, unable to hear clearly.  He is experiencing a word explosion and on my to do list today is coming up with 5 more signs to introduce him to as sign is his preferred language at this time. 

Physically, he is delayed because he is not walking at 22 months.  He can, he just won't.  I'm not too worried about that.  

Man, I'm a liar.  I'm totally worried about that.  HE'S NOT WALKING!!!  I worry that he'll crawl in the hallways of his high school.  He'll crawl to his college classes.  His first pub crawl will be literal.  Crawl down the aisle.  Crawl a 5K.  Crawl his daughter down the aisle when she gets married.  You get the idea.  I have envisioned his entire life CRAWLING!!

So yeah.  That's an area of concern.  The PT put him on a treadmill and had him kick a ball.  He loved it.  Future soccer player,  perhaps.  If he'd get off all fours!  They were extremely impressed with his ability to run, full throttle, in a bear crawl, however.  It is pretty impressive and I'm certain that the speed demon in him is unwilling to learn to walk because it is far slower than bear running.

The artiste and his works
Kelly will use paper, too.  We've got original works, if anyone is interested in one.
His area of strength is fine motor.  In this area, he is ahead of the curve.  He's been stacking blocks for months.  He loves it.  He can stack 5 or 6 blocks and then knock them down and start again.  He also loves to draw.  Loves it.  He's become an expert at finding the markers (washable, thank God) and drawing on the side of our kitchen cabinets.  I was freaked out at first, but then realized how really good he was and I've let it slide.  Plus, he cleans up after himself.

Scrap that, Kelly, and start again.

He'll also grab a hold of any of the kids' school work and decorate it.  They thought it was cute, at first, but I think it might be getting old.  

Fractions?  No, this is unacceptable.  How 'bout a little abstract art?  Much better.


It just might be the best feeling in the world to have a therapist come to you and say, "I'm totally not needed."  

Over the Rainbow

We had an internet outage this week and I just didn't have the fortitude to blog from my phone.  Now, the internet is back up but the cable is out.  Charter cable, in case you were wondering.  Consider it my gift to you.

But I'd like to come back with a bang so today I'll tackle abortion.  And why not.  Who's scared?  Not me.

The termination rate in the United States for pregnancies in which the fetus has Down syndrome is estimated to be anywhere between 70 and 90 percent.  An astounding number, really.  I was completely shocked when I first learned it.  I mean, we are the generation that grew up watching kids with Down syndrome on Sesame Street.  We had people with disabilities integrated into our schools.  There's so much more available today, so much more acceptance, so many opportunities.

And yet, only two out of every ten of us choose to keep our baby to term.

Now, if you know anything about me, you know that I am rabidly, adamantly, militantly pro-choice.  I would rather have my right to vote taken from me than my right to determine what happens to my body.  It is the most fundamental right there is.  Without personal domain over one's one body, there can be no other liberties.  

I'll add to that that I make no judgments on women who exercise that right.  It is not for me to judge.  In fact, my religion expressly forbids it.  

But I do judge a society that puts so little value on people like my son that the majority believe him unworthy of life.  I judge a medical community that believes the cure to Down syndrome is elimination by termination.  I judge a system that deems the disabled liabilities instead of beautiful enhancements worthy of assistance and patience. 

The heartbreaking part of these terminations is that these aren't unwanted pregnancies, these are very much wanted pregnancies with unwanted diagnoses.  

Many women are handed the news along with misleading information and outright lies about Down syndrome.  The burden on the family.  The lifelong health problems.  The learning disability.  I've heard of women who were told by their doctors that most children with Down syndrome spend their lives in institutions.  That may be true somewhere in the world, but that's not true for us here in the US.  Some women are told that most people with Down syndrome never learn to talk or use the toilet.  They are given the bleakest, most terrifying scenarios and then pressured to make a decision before it's too late.

The happiness that these families are robbed of is the most troubling.  The heartache that follows the loss of their child is wholly unnecessary.  

Education is key.  Educating the medical community who educate parents.  Educating people who have never come into contact with Down syndrome.  That's part of why I'm doing this 31 for 21.  I want people to see that there is so much joy, so much normalcy in having a child with Down syndrome.

There are no guarantees in parenthood.  Any of us could be diapering our 40 year old child.  A healthy, typical child can become disabled in the blink of an eye.  A disabled child can bring more pride and love to a family than anyone could imagine.

Termination isn't the cure to Down syndrome.  I had a friend once liken it to ridding the world of rainbows.  Why would we want to do that?

Rainbows are the best part of the rain.



Sunday, October 21, 2012

Fucking Perfect

Today I watched as Kelly admired his reflection.  He talked to himself, full of pride and giggles.  He danced, himself as his best partner.  He gave himself wet, wide mouthed kisses.  He adored what he saw reflected back at him.

To him, he is perfect.  Without flaws.  The most handsome, smartest, funniest guy ever.  He has no awareness yet of chromosomal abnormalities.  He knows nothing of epicanthic folds or flat nasal bridges.  He could care less about the thickness of his neck or the roundness of his face.  Microcephaly?  Whatevs.

Because all he saw in that mirror pure perfection.

I love that.  I pray some asshat doesn't come along, take one look at him, and whisper "retard" just loud enough that it brushes those smaller than usual ears.  I pray that he finds acceptance in a world that can be cruel and harsh to those who are tender and sweet.  I pray that he surrounds himself with people who admire him as much as he admires himself.  But mostly I pray that he always sees his perfectness.

He's fucking perfect to me.

Friday, October 19, 2012


I was asked to write a bit about health care reform and how it will affect Kelly and others like him.

Health care reform is essential for Kelly to live a full, healthy, prosperous life.   Simply put, we are just one complication away from total bankruptcy as a family.  As an adult, he would, most likely, be doomed to Medicaid, public assistance, and poverty should the reforms be repealed.

Take for example, pre-existing conditions.  Down syndrome is a pre-existing condition.  If Mike were to lose his job or become unable to work and we lose our insurance, we would not be able to find another carrier to accept him on our plan.  Blue Cross Blue Shield, our insurance company, has always been very plain in telling people that they will not take someone with Down syndrome back on their plan once they've left.

That was before Obamacare.  Obama's health care reform law no longer allows insurance companies to deny people coverage based on pre-existing conditions.  Obama's health care reform protects Kelly from being rejected for being who he is.

Romney has said that he doesn't agree with discriminating against people because of their pre-existing conditions, but will repeal Obamacare and leave that provision up to the states.  In other words, he will once again make it legal for insurance companies to deny my son coverage.

After I finished typing the above, Mike and I talked about this.  If Mike were to retire before Kelly turned 18, he'd be ineligible for Medicaid in Illinois as it is income based and unable to be on our private plan due to his diagnosis.  I guess, then, Kelly would become one of those uninsured that must use the ER as routine medical care.  I don't even know.

Wow.  That's pretty fucked up.  

Obamacare also eliminated lifetime caps.  Lifetime caps are just what they sound like -- a cap on how much you can cost in medical expenses for your lifetime.  Most of the time caps are set pretty high, above $1 million, closer to $2 million. But when you have a child with Down syndrome who perhaps had heart surgery and then infantile seizures, that adds up pretty quickly.  The medication for the seizures alone is $100,000 per shot.  Yes, you read that right.  That many zeros.

Now, I suck at math, so correct me if I'm wrong, but at $100,000 a shot, one could easily hit the $1 million mark before an 18th birthday.

Even on policies that don't have caps, if a simple accident turns into a major disability, premiums can skyrocket so high that keeping the insurance just isn't possible.  And then, once again, even if you get on your feet, you now have a pre-existing condition preventing you from getting insurance.

This is just an inkling of what's at stake this election with health care reform.  And, in my opinion, Obamacare hardly scratches the surface.   

We're blessed.  Kelly is healthy and requires only a slight bit more than my other children.  But I just talked to the therapists' office today and we are looking at about $300 in co-pays per month, plus 20% of the total bill as so-called co-insurance.  I'm certain that his therapies alone will cost us about $500 a month out of pocket.  Couple that with bimonthly ENT and pulmonologist visits, geneticist visits, CBC blood draws, weight checks, vitamins, supplements, and prescriptions and you get the feeling that the financial weight of a healthy child with a disability can be crushing.

It is cost prohibitive to have a child with a disability.  That's the plain truth of it.  That is why we have a 94% termination rate in this country.  Think about that number.  94%.  That's a whole lot of pro-lifers out there exercising their right to choice because they are terrified of going bankrupt caring for a disabled child.  Where's the much ballyhooed culture of life?

Until we recognize that health care as a fundamental right, we cannot even contemplate a culture of life.   And it pisses me off to hear the right talk about it.

My son is a valuable member of society and he deserves better.  Hell, we all deserve better.

Thursday, October 18, 2012

Taste the Rainbow

I'm all tapped out of topics, other than the ones I'm saving for a day when I have time to do the requisite research and have the time and energy to do them justice.

I went about trying to find something Down syndrome related about which to write and I wound up over at Reece's Rainbow.  If you haven't heard of Reece's Rainbow, head over and check it out.

There are many, many children with Down syndrome waiting to be adopted.  Not here in the US, really, as there's a waiting list for babies with Down syndrome, but overseas, particularly in Eastern Europe.

Some of the countries are particularly bad places to be born with a disability.  Bulgaria for one.  If you haven't yet heard the story of Katie, check out The Blessing of Verity and read up.  She was a tiny, malnourished 9 year old when she came home, no bigger than a newborn.  Today she is thriving in her family home.  The transformation is amazing.

The best part of Reece's Rainbow is their fundraising.  They raise money with a Paypal button.  The money you spend on Starbucks could be used to offset adoption costs instead.

Suddenly pumpkin spice lattes aren't so important, huh.

Wednesday, October 17, 2012

Down syndrome in Black and White

Did you know that Charles Darwin had a son named Charles Waring Darwin who, most likely, had Down syndrome?  Emma Darwin was 45 years old when he was born and descriptions of him by Charles Darwin and his daughter reflect attributes of a triplicated chromosome 21.  He was greatly loved and deeply mourned when he died at 18 months old.

Emma and Charles Waring Darwin in a memorial portraiture 

John Langdon Down, the man for whom the syndrome is named, had a grandson, also named John Langdon Down who had Down syndrome.  He was born after Dr.  Down had published his works on Down syndrome.

The younger John Langdon Down in a family portrait

Dale Evans and Roy Rogers had a daughter named Robin who had Down syndrome.  She died before her second birthday.  Dale later wrote a book about her called Angel Unaware.  I haven't read it, but I've heard it's a short, but uplifting book.

I love how proud Roy looks in this picture.

At a time when people with Down syndrome were thrown away and/or institutionalized, these three families embraced their children.  I can't help but feel good about that.  There's just something so awesome to see children who look like my Kellster in history books.

Just wait.  Kelly will have his own page, too.