When the World Becomes Scary

I was living in London on April 20, 1999 when the Columbine shooting happened.  It was all over the London tabloids.  And I remember it not primarily for the horror of it all, though that's of course its legacy.  I remember it because it's the first time that a world event scared me.

Perhaps I was more naive than most, but at age 20, I was impervious to the news.  It flowed off of me.  Back then, I was young and indestructible and everything in the news happened to "other" people.  I had come from a protected midwest city and gone to a protected college town and finally to London, a place, notwithstanding its peppered history, that was a safe haven among the plethora of other places to study abroad as a college student.

And maybe it's because I had been living for a few months in a place where guns were actually illegal, but Columbine scared me.  I actually had nightmares about returning to the United States and being gunned down.  It wasn't the first of my irrational fears, and it certainly wouldn't be the last, but it left a mark on me.  These innocent suburban American high school students weren't immune to harm, and neither was I.

Two years later I was living in London again on 9/11.  I was at the LSE library, searching for jobs, when I came across a curious news story on the internet.  The World Trade Centers were on fire.  I turned to the person sitting at the computer next to me, a stranger, and told him that planes were crashing into buildings in New York.  He thought I was crazy and changed seats.  That night, scared as to what was going on in the world and at my mother's recommendation, I avoided the tube and took the bus home, adding 45 minutes to my journey.

That night I was harassed by friends and family urging me to come home.  Come home to what?  I thought.  How do you know home is safe?  How do you know London is not safe?  Where is safe? The whole world seemed like a scary place that day.

I made the decision that night that I was going to stay in London.  And in doing so, I would have to set my fear aside and just come what may.  It was a release of control uncharacteristic of me at the time, but one of emotional survival.  I needed to live my life, and so I did.  I rode the tube, I frequented tourist destinations, and when I went to Egypt that spring, against the urging of loved ones, I did so with the same attitude.  It's not that I was oblivious to risk, it's just that I weighed it and then moved on.  That old adage of the most dangerous part of your travels is your drive to the airport?  It became my mantra.  I felt fear, but did it anyway, and it paid out in spades.  My years in London were some of the best of my life, and my trip to Egypt was fantastic.  I went home to live in Manhattan, work in Times Square, and ultimately move to Washington, DC.  Not exactly a path of the terrorist risk-averse, but it's where life has taken me.  When I hear of a terrorist attack, I take a minute to feel the fear go through me, to reason with myself, to mourn, and to move on.  Life is scary, the world is scary, and we can either live our life constantly aware of that fact, or we can just live.  I try my hardest to do the latter.

But my resolve was put to the test on March 22 - the day of the Brussels bombings.

A Recurring Dream and a Plea for Support

Throughout my life, I've had several recurring dreams, most of which are pathetically typical.  The loose tooth dream, the I am enrolled in a college course I forgot to attend dream, the plane crashing dream (in which I never die).  But I've also had another recurring dream for the past two or so decades that is unique to me - it's one where I have a conversation with Elliott.

Elliott is my first cousin - my dad's sister's son.  We have always been very close with my aunt and her family, and have spent summers in Cape Cod with her since before I can remember.  She had kids later in life, so when she had her first adopted son, I was ten years old.  In an irony that is not all too rare, when she adopted her first son, she was actually pregnant with her second.  And approximately six months later, her second son, Elliott, came.

I was in love with both boys.  I was at the age where I was just beginning to feel maternal, and confident and cocky enough to "take care of them."  I changed diapers, I gave bottles, and I held them.  I remember my sister and I fighting vigorously over who got to hold the "bubba" first.

My sister and I with Bubba #1, David.  Check out those glasses!

Thankfully, there were two, so my sister and I could hand off.  I have vivid, clear memories of holding my cousin Elliott, the younger one.  He was so smiley, so happy, and made such good eye contact.  He was such a joyful baby.

Elliott at 6 months - happy, smiling, and looking right at me.

Thirty years later, I am haunted by these memories.  Because in a mere few years from the above photo being taken, Elliott wouldn't make eye contact anymore.  At age 3, he was diagnosed as autistic.

I was young, so I don't remember the details, but I do remember my dad telling me that they thought Elliott might be deaf, because he wasn't talking.  They were going to do some testing, and take him to doctors.  And some time after that, he received the devastating diagnosis.  I didn't really understand what that meant - back then, autism wasn't a mainstream diagnosis that one encountered, or worried about.  And really, if you have never seen an autistic person, how can you really know what it means?  For me, I learned about autism by being with Elliott, year after year.

At first it wasn't completely obvious.  Lots of kids don't talk, and lots of kids have tantrums.  But as Elliott got older, the diagnosis of autism began to take form.  He learned to talk, but would not engage in conversation.  He would not look anyone in the eye.  He would have complete meltdowns over the most random of things - bananas, cold water, loud noises.  As he grew taller and got acne and his voice grew deeper, his mental state lagged.  While his contemporaries were moving on to girls and friends and sports, Elliott still loved playing with toys and watching Barney.  And in any event, he had no interest in friends or girls.  As Elliott likes to say, he prefers a "party of one."  And now - at the age of 25 - he hasn't changed much.  The toys, the shows, the tantrums - the epic tantrums - they've all remained.

I can't even begin to imagine the struggles my aunt has gone through to raise Elliott and give him all of the care that he needs.  There are no breaks, no respites and no end ever in sight.  Elliott requires constant care and supervision, and my aunt has devoted her life to making sure he receives only the best.  She has endured a divorce, a lawsuit against the state to get Elliott the care he is entitled to, and countless aides/teachers/therapists in and out of her home on a constant basis for the last quarter of a century; not to mention the hundreds of thousands she has spent on his therapy and care.  Her life revolves around Elliott - plain and simple.

But through it all, she loves him more than life itself.  And so does our family.  Some of our favorite all time stories are ones we call "Elliotisms."  Ones where he would pick food off a stranger's plate at a restaurant, where he would walk past kids on the dock in the pond and push them off (!), where he would blow out other people's birthday candles (including mine!), and where he would eat 10 Dunkin Donuts in one sitting.  We've all learned the lesson that if you don't laugh, you'll cry.  And Elliott can be pretty hysterical and charming.

The amazing thing about Elliott is that there is more to him than meets the eye.  He is smart - crazy smart, in that weird savant kind of way (give him a date, he'll give you a day of the week).  He is emotional - he used to be obsessed with weddings, and took home a copy of my wedding video and watched it over and over again.  And whenever I see him, he hugs me.  Mostly out of obligation - he has been taught how to be polite and how to mimic social customs, but I also know he cares about me and feels comfortable in my presence.  For Elliott, that's a small circle, and I feel privileged to be a part of it.

And then there's the recurring dream... The one where Elliott and I have a conversation.  I never can recollect what the conversation is about, so I don't think it's ever been something super deep.  But that feeling of able to connect with him - to talk to him, to make eye contact him, to understand him... I do yearn for that.  So I suppose that's why I have dreamed about him so often, for so long.

As my aunt gets older, the inevitable questions arise.  What will become of Elliott when my aunt is gone?  I won't even get into detail about the pathetic state of services for adults with autism, but suffice it to say they don't exist.  And so, as my aunt has done for all of Elliott's life, she is taking things into her own hands.

A couple of years ago, my aunt founded the Greengard Center for Autism, in an effort to address the needs of autistic adults.  Located in Portsmouth, New Hampshire, the center offers a day program (and soon to be residential program) for young adults with autism to receive ongoing education, access to recreation, a social community, and opportunities to find meaningful work.

My aunt has recently leased a property for the center, but it is in desperate need of renovations. She has started a Go Fund Me campaign to help cover some of the costs.

I've always made it a point not to use my blogs as a means to plea for solicitations, for whatever cause, but for this I need to make an exception.  This may be a small center, in Portsmouth New Hampshire, for a handful of autistic adults.  But what it stands for is so much more - autistic adults need services, assistance, and support.  And now, the autism epidemic is coming to a head.  All of those children diagnosed in the past 25 years - 1 in 68 (1 in every 42 boys) - they will all become adults.  As a community, and as a society, it's our job to ensure they are taken care of - because their parents will not be here forever to take care of them.  My aunt's hope and dream is that this center will serve as a model for other communities across the country (and world).

Look, the world is crap these days.  ISIS and guns and a fascist Republican presidential hopeful. But if you are willing, a donation to this campaign - no matter how small- will make a real difference.

Elliott, my aunt, and my whole family thank you!

My aunt and Elliott, at our house this past Thanksgiving.

Here's the link to the Go Fund Me Page - https://www.gofundme.com/greengardcenter

Update: Thank you so much for your generous donations!  My family and I are truly humbled.  In an effort to ramp things up, the person in the DC area who donates the most gets a night out for cocktails with me (drinks on me!).  You can email me at butidohavealawdegree@gmail.com with your donation amount and email address.  AND THANK YOU!!!

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The Perpetual Baby Phase

For the past six and a half years, I have had a diaper in my purse.

Casey, my second child, was born before my first was potty trained.  Back then I had two different sized diapers in my purse.  

Colin, my third child, was born just as Casey was graduating to the potty, but I always had to be prepared.  So around that time I had two sized diapers in my purse too.  

Now my third is 19 months, Casey is 4, Braden (my first) is 6, and I have one size diaper that I carry around.

As the diaper quantity and sizes have shifted around in my purse over time, the majority of my friends have graduated from this stage.  They no longer carry around diapers in their purse.  They also don't cut up food in small pieces or carry around sippy cups.  They don't have to be home by noon for nap time, and scream bloody murder in the car to keep their toddler from falling asleep on the way home.  They don't have to worry about explosive diapers or sleep training or choking hazards, and all of their outlet covers have been removed from their home.  They, and their kids, have graduated to a different stage.  And I kind of want to join them.

The other day at our community pool I saw a mom I recognized from when my oldest was a baby. She was on a lounge chair, reading a book, while her son went off the diving board.  As I chased after Colin heading straight for the pool, and removed a rock from his mouth, I nearly cried.

I'm sick of the diapers.  I'm sick of the baby phase.  And I'm really, really tired.

Our House

We bought our house in December of 2007.  We were told, at the time, that it was "a great time to buy."  It was our first house.

We didn't love our house when we bought it.  Our price range didn't allow us the luxury to buy the quintessential dream home.  Rather, it was, to be frank, the least disgusting of everything we had seen.  It wasn't huge.  It wasn't updated.  It was one level living.  There was no master bath.  But it was clean, and bright, and in a great neighborhood with a great yard.  And anyway, we figured we would move to a nicer house in 2 or 3 years.  With our dual incomes, we were on a pretty good trajectory to eventually upgrade.

We closed on December 15, 2007.  Two weeks later, I found out I was pregnant with our first son.

We settled into our house and prepared for a baby.  We painted the nursery a pale green and spent a ridiculous amount of money on crib bedding.  We bought a glider and I remember sitting in that glider, still pregnant, resting my hand on my growing belly and daydreaming about what our son would be like.

In September of 2008 my son entered this world and became our new housemate.  Life changed.  I went back to work.  We got a nanny.  I got pregnant again.

I decorated another baby room, bought another glider, and in an extreme bout of nesting, convinced my husband that we needed to renovate our entire kitchen and bathroom.  We did, and it transformed our house.  It looked fantastic.