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.

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.

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.

Picasso.  

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.

  

 

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.

Reformation

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.

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.

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.

Debate Night... once again

In light of that, I'm going to leave you with some interesting things about Down syndrome that you may or may not know.

Karen Gaffney.  Check her shit out.  She fucking rocks.

Conny Wenk.  She's a photographer who has some pretty amazing models.  Here's one:

The Girl With The Freckles


Downistie.  It's a Dutch soap opera starring all actors and actresses with Down syndrome.  It's controversial.  Some people don't dig it at all.  Of course, that means I adore it.

Stay tight, peeps.  Till tomorrow...

Depressing Health Shit

I was asked to write a little bit about leukemia and how it affects kids with Down syndrome and why we DS parents are always a little paranoid and perhaps a bit on the hypochrondriac side of sane.

Children with Down syndrome are much more likely to develop childhood leukemia.  The number I have in my head is about 1 in 100.  I know several kids through my online support networks that are currently being treated for leukemia.  It is, understandably, the terror of every DS parent.

We are told to test our kids' blood every six months, doing a CBC (complete blood count), to see where their platelets are.  I will tell you that Kelly hasn't had a normal blood test in his life, and he's had 7 in his short 21 months.  These kids have some wonky blood.  We are also told to be on the look out for signs and symptoms of leukemia:  bruises and petechaie (a rash that does not blanch), lethargy, loss of appetite, lowered immunity.  I was also told that leukemia is not a silent disease, that most likely I will know something is wrong before tests reveal the problem.

That doesn't mean I won't freak the fuck right out when my baby wakes up from a nap covered in petechaie or when he is sick for 6 straight weeks.  Hence the reason he has had 7 CBCs in less than 2 years.

There are two types of leukemia that our kids are usually diagnosed with:  Acute Myeloid Leukemia (AML) and Acute Lymphoblastic Leukemia (ALL).  The diagnoses are about half and half, depending on what literature you look at.  Children with DS tend to develop AML prior to age four and ALL on average between the ages of 3 and 4.  Statistically, childhood leukemia has about a 50% cure rate across the board, but children with DS tend to respond to treatments much better and faster than their typical counterparts.  The cure rate for AML is about 85% for kids with Down syndrome.  I've read varying things about ALL, but it looks to be close to the statistical average of 50%.

Science is not quite sure the exact reason that they develop leukemia more often nor why they are more easily cured, but they think it has to do with the mutation of a specific protein unique to T21.  The mutation not only causes the cancer, but makes it curable.  The key, of course, is to figure out how to unlock the secrets of the cure and to turn off the trigger that is the cause.

There are other things we all live in fear of as well.  Infantile spasms which affect about 10% of all children with Down syndrome.  Hypothyroidism which is seen in about 40% of people with Down syndrome.  Alzheimer's disease which, by the time people with DS hit 60 years of age, has stricken about 95% of the population.

But, again, there are a number of common ailments that the triplicated chromosome number 21 seems to protect them from.  Sold mass malignancies and acquired cardiovascular disease, for example, are much rarer in people with Down syndrome.

It's really a fascinating thing, genetics.  I only wish that they would put more funding toward Down syndrome.  If we can unlock the key of that chromosome, we might be able to figure out a lot of diseases and how to prevent them, rather than cure them.

But, with prenatal testing and high termination rates, we may eliminate people like Kelly before we can fully figure out the secrets.

Alas, that is for another post.

The Apple of Our Eye

Today's suggested topic is special babies go to special people.  Yes, I am going out of order.  But I plan to get to all the questions and suggestions.  If you have any that haven't been posted, leave them here in the comments or post them on my FaceBook.

When you have a child with a disability, you hear that "special babies, special people" line all the time. It changes slightly. "Well, you know, God only sends these special babies to special people."  "A special child for a special family."  "He couldn't have gone to a better family."  "You were chosen to be his parents because God knows you can handle it."

They are all bullshit.

RK Red.  Rapper, published author, fabulous big sister, and my greatest challenge

I don't think God hand selects our trials and tribulations.  I don't think he's sitting on a royal throne tossing disabilities onto children and matching them up the parents who will best care for them.  If that was the case, we wouldn't have children who are abused and neglected.  We wouldn't have orphanages in Eastern Europe filled with abandoned, starving children with Down syndrome.

No, disabilities are just part of nature.  It's a variation of normal.  Like tie-dye roses, the platypus, gay Republicans. There is not rhyme or reason for their existence.  No more or less so than the rest of us, anyway.  It is just variation.  Without variation, we'd all be little boxes, made of ticky tacky, little boxes all the same.

Mike and I are no more equipped than anyone else to handle Kelly and his needs.  In fact, in many ways, we are far less equipped.  Our personalities don't really jive with the whole special needs gig.  We aren't the kind of folks who volunteer at Special Olympics.  We don't do special ed.  We're not particularly patient or selfless.  We hate appointments of any kind.  We don't have money to save for his future.  We laugh our asses off at Something About Mary.  So, yeah, this whole Down syndrome just isn't our thing.

But Kelly is.  He's our son and we do what we have to do for our children.  So would you.  We are no different.

When I was pregnant with Kelly, many of our close friends and family assured us that there was no way Kelly would be born with Down syndrome despite the increased odds we were given.  I believed them.  I kept thinking that we had been through so much in the years prior to his birth, that surely God would be merciful and spare us a child with a disability.



We certainly were tapped out with the children we already had.  Our oldest was posing enough of a challenge.  There was no way God would put more on our plate.

Yet, that's exactly what happened.

I guess, people search for meaning in something like that and that's when the whole special kids/special parents thing comes out of their mouths.  If it were true, it'd make sense.

The truth is that I make mistakes with Kelly just as much as I make them with my other children.  I yell at him when I lose my temper. I feed him junk food to keep him quiet during mass.  I have blown off trying to find him therapies because I hate all the appointments.

Somehow, though, despite all my failings, he's thriving.  Just like his siblings.

Just normal, everyday parenting.

What surprises me is that there aren't more people willing to give it a try, this "special needs" parenting. There are so many people out there with the resources, so many people with the empty space in their hearts, so many people with a special needs child in their womb, who only have their hearts set on a perfect baby.

 But there aren't any perfect babies.  There aren't any perfect parents.  There are just people.  Varying shapes and sizes, rainbows of colors, with abilities and disabilities of so many types we cannot even grasp the possibilities.

As you can tell, we went apple picking today.  My kids are all about picking the perfect apple.  They search around for shiny red ones without blemishes or dimples.  A tiny black spot is cause for rejection.  A warty apple could elicit shrieks of horror.

But I'm an older, more experienced apple picker.

I find that the prettiest apples many times aren't all that sweet.  But if you can gather the courage it takes to bite into an gnarly looking apple, you may get a mouthful of the sweetest, juiciest apple you've ever had.

Or, you may just have a normal tasting, ugly ass apple.

At least it's interesting.

More Ink

I'm going to continue where I left off yesterday, writing about one of the suggestions posted on my FaceBook.

Tattoos for Kelly.

Well, he's got to be a little bit older to get himself a tattoo.  But I plan to get a tattoo in his honor, something I haven't done for any of my other children.

If you read Part 1 of 3 of Kelly's birth story, you may recall that I almost bled to death from a miscarriage.  As I was recovering, my aunt sent me a bag of Dove dark chocolates.  I never knew they put little inspirational messages inside the wrappers of their chocolates.

I opened one and there were the words, "One's best success comes after one's greatest disappointments."

Those words spoke to me so clearly.  I was really beyond disappointment.  I was devastated.  And this little piece of chocolate gave me hope that I would find success if I just made it through.

I looked it up and found that the quote had altered from its original "Men's best successes come after their disappointments."  The source was Henry Ward Beecher, a major progressive leader at the time of the Civil War.  He was a feminist, abolitionist, and preacher, as well as the brother of Harriet Beecher Stowe.  Now, please don't go look him up and find out about that little adulterous scandal he was involved in.  That would tarnish the whole picture I just tried to paint in your head.

After Kelly was born with Down syndrome, I decided I wanted to get that saying made into a tattoo with a three leaf clover.  Three for Trisomy 21.  And the Irish clover for Kelly.  With the saying.  All in one.

So far, no artist has been able or willing to come up with a design incorporating the three elements that I want to put on my body.  I have hope, though.  Like finding a mate:  you just have to wait until the right one comes along.

Strike a Pose

I made an enormous amount of chili today.  About 6 gallons.  I'm a regular old Mama Dugger, I am.  Minus 15 kids.  Tomorrow we have another swim meet about an hour and a half away.  Warm ups start at 7am.  I still have to pack us up, clean up the kitchen, stash the chili in the freezer (which will require a bit of a game of Jinga), shower, and go to bed.  

My time is short.

So I asked on FaceBook for ideas and questions to write about tonight.  I thought I would get some easy questions that I could answer in a few words.  Well, the questions weren't easy and when have I ever used just a few words?  

I'll start with the question about my plans for Kelly's photography career.  

Yes, it's true.  I have big plans for Kelly to be a photographer.  Now, before you start in on the whole "children should be allowed to chose their own interests" line of bullshit, allow me to point out that Tiger Woods' old man decided when Tiger was just a mere cub that he would be a golfer.  He sat Tiger-cub in a high chair and forced him to watch hours of the old man teeing off in their garage.  

It's worked out pretty well for old Tiger.

So my plan is to do the same with Kelly.  I've started his training already.  I pull up portrait studio photos on his iPad and go through them.  Just faces of happy families posing for Christmas or birthdays, engagements and graduations.  When he's a little older, I will get him a two handled digital camera.  By the time he's 10, he'll have the real deal.  My reasoning is simple:  I want my son to have a career.  I want him to do something he enjoys and I want him to do something he does well.

I don't want to perpetuate stereotypes here.  Before I proceed, I want to make absolutely clear that people with Down syndrome are PEOPLE, first and foremost.  When I say that people with DS are this or that, it is a GENERALIZATION.  Like saying women are more maternal than men.  Or that men are more aggressive.  Or that the Irish like to drink.  Or the Ukis like sour cream on all their food.  There are definitely women who are about as maternal as Chuck Norris (who, by the way, would lose his ass to Walter Sobchak), men who'd rather pick flowers than fights, sober Irishmen (although, I've never met one) and Mike hates sour cream.  So bear that in mind, please.

I have read a lot about the strengths and weaknesses of people with Down syndrome.  Math is not a strong suit.  Logic and reason are also not strong areas.  Abstracts are difficult concepts and hard to grasp.  But people with DS do excel at sympathy, empathy, and social understanding.  More so than their typical peers.  This could be because many times they are nonverbal longer than their typical peers.  They rely on body language and facial expression not only to get their own points across, but to understand the communications of others even if they cannot understand the words themselves.  This social understanding strength continues to adulthood.  

I cannot think of a greater strength to have as a photographer.

Also, people with Down syndrome really are happy... happiER than the rest of us, anyway.  That's not to say that they, like all of us, don't have their moments.  But surveys over the years have revealed that they're generally happier.  I think a happy photographer takes a happy portrait.  Better than the sour pusses they employ over at Sears or Walmart.  How can you get a baby to smile when the teenager pressing the button isn't in a good mood?  And I think that many adults with Down syndrome relate well to children.  A happy, in tune photographer who knows what makes a kid smile?  Yeah, I'm feeling it, too!

He, too, can run his own business, not having to overcome the prejudices of a boss who may not hire him based on his appearance and perceived disabilities.  Will he need help running such a business?  Perhaps.  I assume the bookkeeping will be too difficult for him... and for me, too.  We'll hire out or kick one of the other kids off the couch to get a business degree.  

He can set his own hours and prices.  This is important because many people with Down syndrome require government assistance such as Medicaid and to qualify they must keep their income level very low.  He can work as little or as much as he wants based on what he needs.  

And, he can have a career.

Let me be clear: if all Kelly ever does is push carts at the grocery store or volunteer at the library, I'll be proud of him.  No offense to those of you in high powered, self important careers, but cart collecting is a damn vital job.  It doesn't make one way or another if the HR guy from Mike's work doesn't show for a day or five.  But if the cart collector guy at Target goes to Arruba unannounced, all hell's breaking loose at the store.  Same goes for the volunteer shelving books at the library.  Or the dude cleaning the tables at McDonalds.  

Whatever he wants to do, I'll be happy.  

So long as it's photography.  

I mean, I've got the name picked out and everything:  Lucky Shot Photography - Portraits by Kelly

After all, he looks pretty lucky, doesn't he?

If you have any other ideas or questions to ask, please feel free to leave it in the comments section.  I will answer them all before the month is out.  

Computer-less in O'Fallon

My computer is down at the moment. It should be back up tomorrow. It should have been up today, but, alas, things just don't work out that way.

So I downloaded this blogger app in my phone. Pretty cool, eh? Except I I blogging on a little keyboard sucks.

I'm leaving you with an awesome video. Take a moment and watch it. Totally worth the time. You won't regret it. Promise.

http://www.youtube.com/watch?v=MMVfy6_nxp8&feature=youtube_gdata_player

Wordy Wednesday with Illustrations

Just another day in the life of the Kellster.  

Keep scrolling down.  I can't get this damn blog to behave.  It's a mess.  And that dumb side bar there to the right was all over the photos.  Easiet fix.  Scroll.









Keep going...








....almost there!!!

Kelly woke up from his nap and by the time I had the chance to go get him, his tutu was catching some cuddle time in Mama's rocker.

They totally love each other.  She is so patient and kind to him.  He brings out her best qualities like no one else can.  I think that's why she loves him so much.  They're a pair.

She makes him laugh, the sounds of which are contagious.  Once she gets him going, we all start in on a good fit of the giggles.

My book ends.

Kelly was helping around in the kitchen today, too.  He likes to take a big suck of water from his sippy cup and spray it all around the room.  He did that a couple of times and I told him to go clean it up.  That little bugger crawled over to the basket where I keep the kitchen towels, grabbed a towel, crawled back and did just that.

Then, once he was finished with the floor, he figured he might as well do some baking.  Mama's on a diet, though, so I put the kibosh on that nonsense.  There's only so much a hungry gal can take.

This is a still of our PeetSpiwak family salute.  Kelly started it.  He would do this while we were eating dinner.  One day, I just did it with him.  Then the kids started.  Finally, Mike joined in.  Now, on any given day, at any given meal, you will see this done several times.  Noisy.  Irritating.  But, Kelly loves it.

For a recorded performance, hit the above.  For a live performance, invite yourself over for dinner.  But be prepared to salute.  Or no soup for you!

Our Noisy New Normal

Day 9 of this 31 for 21 challenge and I'm already sick of talking about Down syndrome.  A few months after Kelly was born, I found that I was comfortable with his diagnosis.  Not happy, but no longer sad.  I was, however, sick to death of thinking, reading, talking, and learning about Down syndrome.  I really wanted to go one single day without thinking the words "Down syndrome."  It made me angry.  I wanted to be like we were before his birth.  I just wanted to back to our old normal.

Our new normal has Down syndrome in it every day.  Not just once or twice.  I don't get up in the morning and think, "My son has Down syndrome."  But when I watch my 21 month old bear crawl instead of walk while I make his breakfast and sign for more while I spoon it into his mouth instead of yelling at me for more while he shovels it in himself, I know he has Down syndrome.

I've heard other DS mothers liken it to constant background noise.  It's just always there.  Every minute of every day.  But in the background, without much of a nod, without much distraction.  A couple times an hour, though, it gets loud enough to get my full attention.   Every couple hours, it becomes the focus of our whole family.

I assume, as the years go by, I'll get used to that.  Like a new haircut or a piercing.  It'll still be there.  I'll still, just as often, pay it some mind, but it won't have that same intensity.  It'll become as much a part of our new normal as Kelly is a part of our family.

I know some families make Down syndrome a big part of what defines them.  They become involved in the support groups, lobbying, awareness, fundraising.  Their friends all have some connection the DS community.  Like a hobby or a family sport.  But that's not us.  It never will be us.

And so it is that I'm already sick of talking about Down syndrome and refuse to talk any more on it today.  I will instead talk about Kelly and his day.  He lost his socks.  And his pants.  Several times, in fact.  How, pray tell, does one lose one's pants?  I haven't a clue.  But every time I took my eyes off the kids, his pants were off and completely MIA.  They were cute, too.  John Lennon brand blue jeans in honor of the man's 71st birthday.  Maybe Kelly just isn't a dreamer.  Well, he's not the only one.

He crawled all over the hairdresser's while RK was getting her mohawk.  One of the hairdressers is going to school to be a child psychologist to work with special ed kids.  She quickly fell in love with him which Kelly caught onto quickly.  He then immediately took advantage of the fact, throwing bottles of conditioner all over the place and playing in the pile of hair.  He's a player.

He also hung out at the YMCA nursery which might as well be dubbed the Kellster Fan Club Headquarters.  He's a bit of a superstar there.  The workers trip all over themselves to get at him and the other kids love him almost as much.  A little toddler girl was standing next to him while he kept poking her in the cheek and she just kept coming back for more.  I'm pretty sure he thinks he's king.

He also climbed up some unpacked boxes and started banging glass frames together to much laughter and applause by his closest sister, Iryna.  The Ogre (yours truly) came along and put a stop to that.  He climbed into the shower to clean up with me.  He even grabbed the shampoo, put some in his hand, and, with a little coaching, shampooed his hair.  In the interest of full disclosure, I'll tell you, without the coaching, he would have just kept licking the shampoo off his hand.  But really, who can blame him when it's mango scented!

He's right now sleeping like an angel, sprawled out in his crib, snug in his Chicago Bears jammies and a Blackhawks blanket.  My sweet, sweet baby boy.

He ain't heavy. He's my brother.

There's a local Down syndrome support group meeting taking place right now.  I had been planning to go to this meeting for about a month now.  Kelly has no therapies and the one place in town that I was referred to has no openings.  I wanted to ask around, see if there are other places, get some resources, the names of good doctors, maybe make some connections, some friends.

Instead, I'm home.  My daughters are in bed doing that whimper-whimper-hiccup sound that follows terrible, horrible, hysterical sobbing.  I'm pissed off, frustrated, and questioning my parenting skills.  What brought this all about, you wonder?

Boots.  That's all.  Just boots.

Reilly Kate has extreme sensitivity issues.  She has trouble controlling her anger which can quickly escalate into rage.  She lies and manipulates  She needs to be the center of attention at all times, at all costs.  And, as of late, she's taken to hysterics.  I'm talking about truly brutal hysterics.  The kind that send the other kids into fits of sobbing.  Hence the reason Iryna is in bed.  She fell victim to Reilly Kate's antics.  Once again.

Reilly Kate, out of all my children, takes up the most of our parenting energy.  I'd say at least 75%.  Probably closer to 90% on most days.  What little is left is poor quality and split between the other three.  It's hard.  On all of us.

But she's our daughter and we couldn't love her more if she was flawlessly behaved.  She's a wonderful sister to Kelly and Roman's best friend.  Iryna loves her so much, she cleaned Reilly Kate's room today.  She is as much the light of our family as she is its center.

It has occurred to me, many times, since Kelly's birth that Reilly Kate is special needs.  We as a family have been dealing with her special needs since her birth and will continue to do so, I assume, for most of her adult life.  At times, like this evening, her behavior can be a burden to the entire family.

Yet, there's no prenatal test for that.

Think about that.  A perfectly healthy, normal child with special needs.  In fact, most children with special needs are born perfectly healthy and normal.  So why is there such a heavy emphasis on testing for Down syndrome followed by intense pressure from the medical community and even society at large to abort?  What is it that's so scary about Down syndrome?

It's entirely about the cognitive disadvantage people with DS have.  Pure and simple.  We have placed so much of our own self worth on intellect and intelligence that we cannot see the value in someone who has significantly less than we.  We can't imagine they'll find meaningful work and be satisfied in their careers if we aren't.  Or that they'll be happy with their lives or find a mate or know God.  How could they, if we can't?

The truth is that people with Down syndrome, overall, are extremely happy with their lives and find meaning in their work and the people they're with.  They do find mates and know God.  Most attain what we all would like to have: satisfaction.

From my perspective, I have one child that I will have to always try to help stay focused on her goals and find happiness in life.  And another child who is pretty happy and self confident.  The burden is in the eye of the beholder.

We all are burdens in some way or another.  It's part of living together in family units and society as a whole.  But many people with Down syndrome are just the opposite in their families, bringing much needed joy and simplicity to an stressed out world.

Now, I'm not all sunshine and kittens about Down syndrome.  I think it sucks and if I could change it for Kelly, I would.  In a heartbeat.  Without thinking twice.  It's a chromosomal abnormality that causes so many complications, both physical and cognitive, that I'm not about to start naming them here.  And yes, most people with Down syndrome are dependent upon others to assist them with daily living.

But how is that any worse than the kid who is on drugs or schizophrenic or just difficult and unhappy?

It's not.

I like to think that God sent us Kelly to be a remedy for Reilly Kate.  To show her how to be happy, to bring her joy, to tap on her heart and make it melt with pure love.  I like to think of them as my bookends -- opposite ends, holding our family closely together.

I just hope the Kellster is up for the challenge.

Lions and Tigers and Mongoloids

I haven't had more than 4 hours sleep in just as many days.  Plus, I officiated on deck for our swimmers at a meet that lasted from 9am till 5pm.  That's two long meets in a row.  I'm so exhausted I can hardly type.

But I didn't want to drop the ball this early into my challenge.  And I have a really great story.  So, I'll write as much as I can until I pass out completely.

On the pool deck, I was assigned to a man named John.  Through the course of conversation, I told him that Kelly had Down syndrome.  He got very exciteed and pointed out a young man helping by the finish wall who also had DS.

"I've worked paralympics and special olympics for a long time.  I've worked with them all.  Down syndromes, mongoloids, palsies.  I even had a kid with no arms and legs."

I'll be honest.  I was shocked.  I'd never had someone use that term in my presence before.  I just stood there with a stupid grin on my face and nervously giggled.  But, it's hard, extremely hard, to offend me so I just kept listening, stupid grin still firmly in place.

I'm so glad I didn't tune him out.  He had a great attitude and really does have experience dealing with people with all different types of abilities and disabilities.

"Treat your son like any of your other kids.  If you treat him like a baby, he'll grow up to be a baby.  Then you'll have a 40 year old baby."

"Remember, he's just as smart as the others.  He just learns different."

"Do not ever tell him he can't do something.  Don't ever say "can't."  I tell kids there is no "can't."  There's just "can" and "won't."  He CAN!!  And he will.  You'll see."

"Put him in the water.  Tell him he will swim.  He can and he will."

"No matter what it is that he wants to do, remind me that he CAN.  If you tell him he can and he believes he can, he will achieve more than you ever thought possible."

Words.  They're powerful.  Don't allow the meaningless ones to get in your way of hearing the ones that really and truly matter.

What're you lookin' at?

You'll be surprised to find out that I spent my entire day at a swim meet.  Even more surprising still is that we'll be leaving the house at 6am tomorrow morning to go to yet another swim meet.  I think I'm actually addicted to the chlorine fumes.  That's what keeps me going.  That and the concession stand.  Or as Roman likes to call it, the confession stand.  After eating all that garbage, one should really go and confess their gluttony.

But I'm not going to confess my gluttony as I am lacking it today.  Yes, yes, your truly fat housewife is now on the requisite starvation diet.  Soon, I'll just be the proverbial fat housewife.  So what I'm going to confess is...

...I'm a starer.

There.  I said it.  I stare.  I don't mean to and most of the time I catch myself.  Then it turns into that awkward "where do I look" kind of thing.  People with nose rings drive me mad because I wind up talking to their nose.  Good thing I don't talk to myself.  I have a nose ring.

And so it was, today, that I was walking around the pool deck to find the perfect place to scream, "Swim faster, ya little bastard, or I'll cut ya outta my will!" at my oldest male offspring, when I walked straight into a woman with an enormous growth on her shoulder.  It looked a lot like a breast, a nice, ample, yet firm, round breast, growing straight out of her deltoid.  Now that's something you don't see every day and I found myself talking straight to her delto-breast.

"Oh, I'm sorry.  I didn't see you..." I stumbled.  "I mean, I'm... I'm... just trying to..."

Thankfully, she was in a hurry to get a lost pair of goggles onto the face of a kid just stepping onto the blocks.  She didn't hear a word.  But most importantly, she didn't notice that I was staring straight at her growth.

While walking away, I thought of the many times I've corrected my kids while they were staring at someone who didn't fit the typical mold.  Iryna is the worst.  She'll do an open mouthed gawk, craning her neck and tripping over anything that lay in her path, eyes never leaving her victim.  I remind her that it's not nice to stare and that it can hurt the person's feelings.

The truth is, though, that it is human nature.  We're curious, inquisitive creatures.  It's in our DNA code.  Integral to God's evolutionary plan.  When we see something different, unusual, exotic, it holds a certain appeal to our brains.  We must gather more information.

And so it is with having a child with Down syndrome.  People look.  Now, not so much with Kelly yet as he is still growing into his features.  Although, it is slowly starting.  I've noticed people look hard, or do a double take when I tell them how old he is.  If I tell them he has Down syndrome, they'll examine his face closely, bending over to get a better angle.  Even medical personnel.

Soon, though, we'll start getting stares.  It's not like we're not used to that.  We could really draw a crowd when we lived in Asia.  And I do mean a crowd.  Once, at a mall in Korea, the crowd got so large, that we felt overwhelmed and wound up escaping to a bathroom to hide out for a bit.... and about 20 women followed us in!

So, stares don't really bother me.  What does, though, is staring without making contact, staring without a hint of a smile, staring while whispering, staring while judging.  I understand why people will stare at Kelly.  I find myself staring at people with Down syndrome, too.  Now more than ever, in fact.  I think, too, that it's far better to stare than it is to ignore.  Being invisible to society is the worst kind of ostracization there is.

My advice to you, from a fellow starer and as the mother of someone stared at, is to reach out.  Don't just stare, smile.  Talk to the person you are gawking at.  Teach your children to connect with people.  Don't just tell them it's impolite to stare.  That doesn't teach them anything but to turn away.  People with differences know they're different.  They don't need you to turn away to make them feel normal.

For my part, I try to teach my children to take it all in stride.  To answer people's questions about Kelly and to try to get them as comfortable as we are with him.  Other children are very interested and we've had some really great discussions.  I hope Kelly will grow to become a great diplomat for the Down syndrome community.  Someone who can represent without shame or embarrassment.  Someone who, upon realizing he is being stared at, makes eye contact with the starer and simply says, "Hi, I'm Kelly"

Later today, toward the end of the meet, I saw the woman with the shoulder growth walking through the swimmers' labyrinth of backpacks and towels and waiting parents.  I had Kelly on my hip as I walked over to her, looked her straight in the eye and said, "I am so sorry, I totally almost ran you over earlier.  I was in a huge hurry to see my kid suck at his relay."

She laughed, then gave a high five to a giggling Kelly and said, "He's adorable.  What's his name?"

There we stood and gabbed, just two women admiring a beautiful baby boy.  Because that too is just human nature.

Somewhere Over the Rainbow

Another late night blog session.  It's even later tonight than it was last.  By the end of this 31 day experiment I'll no longer sleep, subsisting merely on diet pop and the tingly feeling I get in my hands when I've been typing too much.

I spent the entire day today taking a test to become a YMCA swim official.  It's a very long, drawn out process to be a swim official.  But it's important.  I even get to wear a uniform.  Well, kinda.  If you know anything about our kids, you know they're swimmers.  Kelly will be, too, no doubt.  Swimming runs in families.  If one kid is a swimmer, most likely, they're all swimmers.  Look at Michael Phelps. He started swimming because his sisters swam.

So when Kelly was born, word about his diagnosis spread quickly through our swim team.  The first time I brought him to a practice, the coach came up to meet him.  He hesitated then asked, "Do you think he'll... that he'll be able to... "

"Swim?" I finished for him.  "Yeah, I don't see why he wouldn't be able to."

And that's kind of been our attitude toward raising Kelly.  I can't imagine really what he won't be able to do.  I mean, of course, within reason.  He won't be an astrophysicist or hold the title "World's Fastest Man."  He won't be an air traffic controller, a professional hockey player, or an international spy.  But then again, most likely, neither will my other children.

The difference is that when you have your fresh from God, tiny bundle of brand new baby in your arms, you can dream about those things.  You dream about them pitching a perfect game until they announce at the end of season awards ceremony that they "had a terrible time" and "hate baseball."  You dream about them getting a scholarship and working at NASA only to realize that it'll be a miracle if you get them out of high school.  The dreams you once had when they were newborns are taken away slowly as the person they are to become is revealed.  Then you find yourself creating new dreams, like swimming championships and early release for good behavior.

But when that newborn bundle of joy is diagnosed with Down syndrome, those dreams are ripped from your heart.  You don't have time to develop new dreams right away.  You mourn all that you lost, the child you lost, the dreams, the future.  It takes time to pick yourself up, dust yourself off, and rebuild.  And when you do, the dreams are different.  The goals are altered and amended.  The world you see around you is changed.

Someone once told me that with Down syndrome the lows are lower, but the highs are so much higher that you forget about the lows.

I didn't really understand that until Kelly started crawling.  He'd worked so hard to do it.  For months he was so close. The moment that he actually executed a four point crawl was shear joy.  Bliss.  I bragged on him for weeks, till everyone got sick of hearing the story (he crawled on the dirty floor of a CC's pizza, grubbing after a dirty old pizza crust -- it's a great, bloggable story).

And now, Kelly, at 21 months old, took his first steps this very week.  Just tiny little shuffle steps.  Two of them.  But they were beautiful.  Like breaking through the finish line.  Or finding the cure for cancer.  Everyone at the Y was cheering him on, chanting his name, clapping.  I had tears streaming down my face and as I closed my eyes, I realized all my dreams were coming true after all.

I betcha think this blog is about you, don't you, don't you

Good lord, THIS is why I no longer blog.  It is 10:30 at night, I'm exhausted, and I am just now logging on to blog 1 of 31 for 21 (did you follow that?).  I have too many children to blog.  And my kids don't behave like those other bloggers' kids do.  My kids are wild beasts running amok through the wilderness of boxes, dirty clothes, and yet to be hung picture frames that is my house.

There's another DS mom who has like 12 kids, two with DS, she homeschools, and fundraises and sews her own curtains.  Every time she posts a video, you can hear the sound of a child practicing piano in the background.  PIANO!!  Every damn video.  Trust me, my dear readers (and by "dear readers" I mean you, Mom, because I'm pretty sure you are the only reader I have left), if I ever post a video and you can hear a piano in the background, it's a CD.  Either that or it's totally posed and took me an hour of screaming, half an hour of begging, 20 minutes of sobbing, and finally a monetary bribe to make it happen.  And just for the duration of the video.

I'd ever do that, though.  Too much work.  Seriously.  I'm vain, but not that vain.  Yet, I've noticed since Kelly was born with Down  syndrome that I am a bit more concerned with his appearance and how he is received than I ever was with my other children.  I will go out of my way, sometimes ridiculously, to make sure he looks and acts... well... hells bells, this is my blog so I'm just going to say it... NORMAL.

Please don't misunderstand me.  I think he is adorable.  In fact, since my induction into the Down syndrome world, I find that babies with DS are actually cuter than their humdrum 46er counterparts.  There's just something really cherubic about their appearance.  Cute little noses.  Impish grins.  Almond shaped eyes of the most intriguing, spectacular colors (if you don't know what brushfield spots are, read here and discover than there are truly beautiful aspects to a triplicated chromosome 21).

So why then do I avoid sharing pictures of Kelly looking particularly "downsy?"  Vanity, thy name is Mama.

Adorable pictures like this one are discarded, leaving out one of Kelly's cutest talents -- the cheese ball grin for the camera.  He does this every time I start taking pictures of him.  It's his signature pose.

"I'm a ham!"

Here's the Kellster posing with Daddy.  He's all grins and love and sweetness.  That's what I want people to see when they look at him.  I want people to see KELLY.  The little boy who loves balls and trucks and dogs and his daddy.  He's so much more than his chromosome count.  I guess that's why I try to avoid drawing attention to the physical aspects of his diagnosis.

Then there are times when I worry he's being judged first and foremost by Down syndrome.  I've found myself saying things like, "That's perfectly normal.  All babies do that," or "That has nothing to do with Down syndrome," and "Oh, my oldest did that way more than Kelly." Sometimes there's good reason.  Some people do stare or judge.  You can see it in their faces.

One of Kelly's favorite sensory behaviors is screaming.  Whenever Kelly starts screaming at the very top of his lungs, instead of trying to quiet him down, I just get really loud myself.  "Yes, we are a very loud family.  We're all loud.  Screamers, I tell ya!  We should change our name to the McYellersons!"

Catching flies.

Combine that with my obsessively shoving Kelly's tongue back in his mouth and tapping his bottom jaw to remind him to shut it, and I'm sure I look, and sound, ridiculous.

Often, I feel like Kelly's on stage, representing the entire DS world.  That every little thing he does or says or doesn't do or say is being interpreted by others as an attribute of Down syndrome.  I may be vain, but I think there's a lot of truth to that.  We, as a society, tend to lump people into categories and judge all the people we've lumped together to be the same.  Particularly the disabled.  Even more specifically, the cognitively disabled.  And it's even easier to do with Down syndrome because of the similarities they exhibit.

But not all people with Down syndrome are happy.  Not all people with Down syndrome make funny faces at the camera.  Not all people with Down syndrome have brushfield spots.  Not all people with Down syndrome love their vain ass mama.  But Kelly does.

I remember, a long time before I started having children, watching a show about a little boy born without arms and legs.  His mother said that she took him to a grocery store when he was still a little baby.  She had him bundled up in a blanket and sitting in his car seat in the shopping cart.  He was screaming his head off, she said.  The entire shopping trip.  Once she got him back out to the car, she unbundled him and he immediately stopped crying.  He was hot.  That's why he was crying.  It was summer and she had him bundled up because she didn't want people staring at him.  She thought she was protecting him. She thought she was being a good mother to shield him from the scrutiny of a harsh, judgmental world.  But she was smothering him.  She vowed never to do that again.

This is my unbundling of Kelly.  He's his own man and I [will try] to allow him to shine in the spotlight he deserves.  I'm not perfect.  I'm a mother, after all.  But perfection is rarely achieved, and usually takes something completely IMperfect to bring it forth.  But Kelly knows all about that.  Check out his pose!

CHEESE!

Stick that tongue back in your mouth!  Oh, and that rash?  That has absolutely NOTHING to do with Down syndrome.  Or at least I don't think it does.

Strike a pose, Mr Fishlips.