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?

The Brassica Project

It sounds like a Cold War era thriller or some End of Days movie.  It isn't.

No, the Brassica Project is something so hideous, so unspeakably nightmarish that if it were a movie, it would be Saw 7.  Was there a Saw 7 already?  Well, whatever Saw comes next.

It started innocently enough.  A school project for science.  Yay!  This will be fun!  We get to do it together!  Over Spring Break!  

Wait.  What?  You have to complete a science project over Spring Break?  Uh, okay...less fun, but, WEGETTODOITTOGETHER!  What a great time to bond over Elmer's glue and...


Oh, there's a list of items we need to buy?

And we can only use these very specific items?

But, Brassica at least comes in lots of colors, so we can pick that, right?


It's not that Brassica is ugly.  Okay, for a flower, it's kind of ugly. Yellow is not my favorite but, whatever.

The first time I had to help with this project, it was for my oldest son.  The lessons I learned the first go round were: 

1. Children should never be left unsupervised with paint:  Ever.
2. When paint dries, the dowel you so carefully painted sticks to the newspaper that you put down to protect the table.
3. I would rather sell my soul to the Devil himself than ever, ever undertake this gluey, horrific nightmare again.

After buying three different colors of pipe cleaners, wooden dowels, two colors of some eco-nightmarish foam, paint and a terracotta pot to put it in, I was down two hours of my life and $25.

And, just as an aside, what is the deal with learning about plants by building a replica?  Can't we just grow one?  Wouldn't that be 
smarter/easier/more meaningful/less wasteful/greener?

And the fun hadn't even begun, yet.

Turns out that this Beelzebub foam does not stick very easily.  And the wooden dowels need to dry over night before gluing them into place...which then, also needs to dry overnight.

Overall, we spent 5-6 hours on this ugly, useless project; all for a smiley face sticker and a place on the shelf with the other 27 identical, crappy looking "flowers".


I tried to block it from my memory and it worked until the last day of school when B brought it home.  

Really?  Now I have to display this?  Where is my jar of tonsils?  I want to put them on the same shelf. Pretty sure that procedure was less painful and no less attractive.

After a few months, I was able to remove this atrocity from view, under the guise of "saving" it (in the garbage can) for the future.  

I almost forgot about it.  I had been drifting blissfully through the school years when, I saw it:  The instruction sheet for another Brassica project.  NOOO!  Dear God, NO!!!  WHYOHWHYOHWHY?!?!?!???

We managed to live through that one as well, but barely.

Our two youngest are so close in age that they are in the same grade at school.  When my middle son didn't receive this project the same year as the youngest, I thought we were in the clear.  

But then...

Like an antelope munching unawares, I was pounced upon by another sheet of instructions.

This time, I flat out refused.  I voiced my concerns to the teacher.  I told her where to go what I thought of this insane project.

In the end, I relented, but only because I liked this teacher so much in every other respect and because the class was such a small size that having C's ugly flower missing would have been pretty obvious.

Three boys.  Three nearly identical wood and foam and pipe cleaner flower models.  They seem to have managed to escape mostly unscathed, but I still have nightmares about it.  I wake up screaming "Wait!  The glue hasn't dried!  The petals are falling off!", before I realize that I will never, ever again need to undertake another Brassica project.