Wednesday, September 4, 2013

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.


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?


  1. We have multiple things going on too and it's good to be reminded we're still just a family like anybody else's. Thanks!

    1. Not sure why, but I am only seeing this now! Hope things are going well with you!

  2. Love this post, Amy. Life is complicated, no matter how you slice it. that doesn't make it bad, it just makes it life.

  3. You found out about Ds the same way I did - the Ds never felt that big a deal next to open heart surgery. We'd lost our first and the thought of losing another... Perspective is the greatest gift.
    And, yes, family. Always.

    1. How did I not see this earlier? Sorry! Perspective, yes. It's an amazing thing. Sorry for your loss. I never knew. <3