Friday, December 11, 2015

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 -

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 with your donation amount and email address.  AND THANK YOU!!!

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Friday, December 4, 2015

My Greatest Indulgence

When I was considering whether or not to have a third child, I viewed it as a bit presumptuous.  Like asking for too much.  I already had two amazing, healthy children that I loved more than anything - was it too bold to ask for one more?  Was I being too indulgent?

I didn't think that way when considering my first two kids.  I supposed that's because I always knew I would have two children - for no real reason, really, other than the fact that that is what I just always viewed as "normal."   Considering a third seemed like a grand deviation - a rejection of the nuclear 2 sibling family with which I was brought up in, and with what I had always envisioned for myself.

But then there's that saying that every woman knows when her quiver is full, and part of me knew that mine just wasn't.  Ultimately there came a time, when my second was around 2 years old, that I felt ready.  I knew someone was missing.  I just didn't know that that person would be a blonde haired, blue eyed boy named Colin.  Who just turned 2 years old.

From the moment I set my eyes on him, I knew that I had not in fact been presumptuous.  This baby was not asking for too much.  He was not just a bonus.  He was his own person, meant to be my child.  I knew upon meeting him that my life would never again be complete without him, and that he filled a huge gaping hole that I never even knew existed.

Hanging out with him these past two years has been one of the greatest experiences of my life.

It's been an experience distinct from my years as a mother prior to him arriving.  The fact is, I'm a different mom to Colin than I was to his older brothers - in good and bad ways.  Like the quintessential third child, I don't take as many pictures, I have yet to complete his baby book, and I really couldn't tell you when he got his first tooth or took his first step.  But in a weird way, this is refreshing - I don't do these things because I've learned the important lesson that memorializing a moment isn't as important as experiencing it.  And so instead of documenting his days, I enjoy his days - present in each one, having also learned the lesson that time goes by painfully fast.  

I am incredibly laid back, sometimes to a fault.  I don't sweat it if Colin doesn't eat his vegetables or misses a nap, and when he takes a tumble I don't gasp in panic.  He can eat dirt or sand or paper products without me being overly concerned.  When I picked him up from the gym childcare last week, I didn't lose my shit when I realized he was drinking a bottle of someone else's breast milk. And if he wakes up in the middle of the night, I don't freak out about bringing him to our bed and creating bad habits.  I relish the time I get to rock him to sleep, for I know our time for this is short.

Colin doesn't get as much attention as his older brothers did at his age, but as a result he is incredibly independent.  He roams freely throughout the house, and at times I actually can't find him (something that would have made me pass out with my first child).  Generally I find him playing with trains in the basement, trying on his brothers' clothing, or in his room, reading a book.

Photo courtesy of Darcy Troutman Photography
Photo courtesy of Darcy Troutman Photography
Of course, I do harbor some third child guilt.  When we have mornings free, I tend to go to the gym and put him in the childcare, rather than take him to the park.  His life revolves around our lives - hanging out during the older boys' activities, or tagging along with me on errands - rather than the reverse, as it had been particularly with my first born.  The fact that his birthday blog post is three weeks late is indicative of how his needs tend to take the backseat to the demands of his grade school brothers, and my hectic life.

For his birthday a few weeks ago, I decided to make the day all about him.  After we dropped his brothers off at school, we went to Turtle Park - a park I used to take my oldest to almost daily when he was a toddler.  I don't think Colin had ever been there before.

We had a wonderful day- just him and I.

A few days later, we had a birthday party.  It was smaller than the 2nd birthday parties we had for his two older brothers - by this time, we had learned our lesson regarding 2 year old birthday parties (because what 2 year old has friends and what 2 year old is ever going to remember?).  But in many ways, it was more special.  We celebrated with cousins and aunts and uncles and close friends.  We celebrated Colin.

As a parent I still haven't figured out how much of my kids' personalities are nature or nurture, but all I can say is that this boy is the happiest kid I have ever met.  He is always smiling, always giggling, always enjoying life.  I mean, the kid cracks up laughing every time he sees a bird.  Every. single. time.

The notion that we might have stopped at 2 seems inconceivable, and would have been tragic. Because this boy brings joy to anyone and everyone around him.  Especially me.

Photo courtesy of Darcy Troutman Photography
I am head over heels in love with this third baby of mine - this baby we never thought we would have, but were destined to.  I can't wait to see who he's going to be.

Happy 2nd birthday, my baby boy.

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