Clouds, May 2010

Clouds, May 2010

Monday, December 17, 2012

we need to talk

It was one of the first few days of December when I happened to watch Lynne Ramsay's 2011 drama We Need to Talk About Kevin, based on the novel by Lionel Shriver, starring Tilda Swinton & John C. Reilly (as Kevin's parents).

I'm eerily in disbelief that I happened to see this movie & less than two weeks later an unthinkable horror occurred at Sandy Hook Elementary School.

(By the way, people of the web, it's not Sandy Brook Elementary, or Sandy Creek Elementary... it's Sandy Hook. And it's not Newton. It's Newtown.
A big difference one letter can make because I will tell you at first glance, when I saw that on TV, it felt as if my heart was going to beat right outside of my chest... my eyes did not catch that second "w"... & with the address of my son's school being "Newton"... I was frozen. My father happened to be driving some place, was also mistaken at first when he heard it on the radio, & nearly swung his car around to head up here. Until we each realized it was Connecticut, even if only a moment later, it was enough to be terrified on top of horrified)


The film I'm referring to unfolds from the mother's perspective, about her son who she suspects there is something very wrong with. As a toddler, in response to her vague concerns, the pediatrician tells her that Kevin is absolutely fine. Still the viewer is confused as Kevin displays a complete, deliberate dislike towards her & is downright nasty. But Kevin is also careful about when he acts towards his mother this way, & is subtle about doing so in the presence of his father. By the time Kevin is a young kid, not much has changed & the husband only reassures his wife that all children develop at a different pace... & that incidents X, Y, & Z were just accidents.

We know at the beginning of the film that it's picking up after something terribly awful has already happened, because this is evident based on all aspects of the mother's very sad life. But as the whole story is slowly revealed through flashbacks, I was already heartbroken & frightened before the movie was anywhere near its climactic, gruesome finale.

I don't even remember adding this damn movie to my Netflix queue. (Same thing happened last week when some lame-ass Hunger Games documentary arrived in our mailbox & I have zero recollection of clicking on such a thing.)

I wish I never saw this We Need to Talk About Kevin, & I do not recommend it... especially now... in the wake of everything... it would be entirely, entirely too difficult to remember it's a fictional story. I actually wish Netflix would at least temporarily mark it as unavailable or something.

Even last night I was a little bit emotional over the thought of sending H to school today. And then when he safely arrived home this afternoon, I tried to shield my overwhelming sense of relief from the van driver because I didn't want to her think I'm a weirdo.

At one point late this afternoon, the school sent out a friggin instant alert stating to check the district site for a message from the superintendent. That's the same thing as saying, "We have something urgent to tell you but go to your computer to find out what it is." I thought gee that's not unsettling or anything.

It was basically a generic memo about the safety protocols in place & so forth, but the timing of the announcement was hardly comforting. They should have released the notification later in the day after most kids were already home. In the wake of everything it was momentarily nerve-wrecking to get this random alert without any upcoming school event or snow falling outside.

So after Hayden arrived home I went through his backpack as I always do... I emptied any uneaten food, cleaned the papers out of the folders, & checked the communication journals. They reported another tough day today.

Going back the last 25 journal entries, 9 of them begin with "H had a tough time today". Four of those tough days involved a lunch room incident.

You see, for a child with fragile x that actually makes sense... a lunch room is busy, it's loud, it's smelly, it's loud, you sit unsupported on a bench, & ... oh, yeah... it's loud.

But H has been eating lunch in that very same setting for years. This has never been an issue. However, during recent weeks it seems as though everything is an issue.

I sort of understood his challenging behavior near the end of November... when everything in the wake of Hurricane Sandy was probably just catching up with him. Kids with fx are globally, developmentally delayed & in general that may include a delay in processing something unfamiliar. This wasn't just an 8-day power outage as far as Hayden's concerned. It was a complete disruption to his entire routine, & his whole neighborhood looked different. And for any child who thrives on familiarity, & on schedule, & on knowing what to expect, & how long something will take, & that things look the way they're supposed to... this was not only about stocking up on batteries & waiting in gas lines.

For WEEKS he was talking about the power, the generator, gasoline, trees falling, etc. Even after things were settling to a sense of normalcy. But after he stopped talking about the generator & all of those things, & he genuinely seemed to have moved beyond thinking about the storm, I would still witness these outbursts at home & learn of similar behaviors at school.

We've actually had a Behaviorist working with us at home-- she is here twice a week after school & has the opportunity to observe him in school as well. The good news is that she really hasn't corrected me when we're working through one of H's meltdowns, & consistently tells me that she wouldn't suggest I handle it any differently. The bad news is she doesn't see how I could handle these situations much differently.

At least once a week Hayden's behavior will escalate into this sort of disorganized, chaotic state... he will almost whirl about forcing things out of place, like a familiar Looney Tunes character until he either exhausts himself, starts to re-regulate, or is safely restrained by one of us. Basically which ever comes first, but typically the latter. This requires a wee bit of persistence on our part, because he will use his hands, feet, limbs, & even his mouth to resist us trying to safely control him.

But never would this emerge unless in the presence of someone he is comfortable with, & he knows he is safe with.

Hayden's broken x-chromosome interferes with his body's ability to produce a specific protein... one which is not needed in most organs of the body. Yet one organ that does need this protein... is the brain.

So you know what? We have conversations, we write in the communication journal, we send emails, we have team meetings (just had another one), Dan & I bring Hayden to specialists, we get reports, we share them with the school, the pediatrician is kept in the loop, we develop plans, we see what works, we track, we revisit, & as needed, we start all over again... we constantly need to talk about Hayden and we do

I hate to use the term intellectual capacity in this context, but the fact is that people with fragile x syndrome do not have the intellectual capacity to orchestrate any significant catastrophe. Not only would they be incapable of such a thing from a motor planning as well as cognitive perspective, they wouldn't because they have HEART. Hayden demonstrates kindness, he knows how to love, he shows remorse, he wants to do well, & it's up to us to give him a chance to do so. 

On Friday & Saturday I recall the endless posts of complete shock, a devastated society shaken to its very core, people sharing photographs & quotes in honor of all those angels who rose from the school that day. Within a day the hot topic switched to disagreements over gun control. (By the way just a week or so before this tragedy, I actually saw a discussion over the mall shooting... during which someone made a comment, "that's why I pack this time of year." I think that speaks for itself.) Anyway, fast forward just three days removed from this horror & are we as 'One Nation Under G-d' actually pointing our finger at autism?

Not everything is so black & white because obviously not everyone has an identifiable defect in their DNA. But in
the wake of this unthinkable tragedy at Sandy Hook Elementary we need to talk about mental health education... we need to talk about resources... we need to make sure there is global awareness... we need to talk about the right to bear arms... we need to talk about antiquated laws & regulations surrounding this right (or lack thereof)... we need to talk about the media... & we may even need to talk about video games...

We need to address these topics with same level of urgency as bullying or hate crimes. A few hours ago I see this article pop up on The Huffington Post, reporting a significant surge in gun sales following Friday's massacre. There was bloodshed in an elementary school for crying out loud... & what do Americans do? They turn around & buy more guns & ammo. 

It is up to us as a society to halt our irresponsibly hasty reactions, to gather all information, & to have a civilized discussion. On behalf of the voices that can no longer be heard, we need to first use our own voices... not our hands.


Wednesday, December 5, 2012

poppy freddy

My grandfather adored babies. The day before Thanksgiving in November of 2001, when Dan & I saw Poppy on the eve of our engagement, I remember him in the doorway of my childhood home in Livingston. My grandparents arrived through the back door & had not even entered the family room yet, when the first thing my grandfather did was cradle his arms like he was holding a baby.

I was the first grandchild to become engaged & before he even uttered a "mazel tov", he wanted us to know his first great grandchild could not arrive fast enough.

My grandfather was a brilliant man & he was also a physician. I remember his Doctor's office attached to my mom's childhood home, & that of her three siblings. There was a door off the kitchen which led to the x-ray room & although I remember very little of the waiting room & exam rooms, I do recall a few occasions when Poppy removed his grandchildren's loose teeth from inside there. I also remember stories of us kids visiting him on the job at Hackensack Medical Center & my apparent curiosity in his work... such as the time I supposedly watched him stitch someone's finger back on following their motorcycle accident... as Jenna screamed & ran away.

I remember the way he ordered his soup at a restaurant. He would tell the waiter or waitress to make sure it was hot, & always specified temperature-hot but not spicy-hot. I remember he loved rice pudding as much as me but he would prefer to hold the cinnamon. I remember he loved chow mein, & I remember where he sat at the dining table in their old Victorian home: at the head on the opposite end from the doorway to the kitchen. I used to sit on the side opposite my grandmother's hutch. I remember many Passovers, when he skillfully pulled off a very believable Elijah presence.

But I also remember as I grew older so did Poppy. His handwriting became shaky, he was unsteady when using utensils, & over the years his balance & ability to walk were affected. As his motor functions declined over time, he went from using a cane, to needing a walker, & eventually a scooter. Mentally he was completely aware & understood he did not have Parkinson's, but at the same time the doctors did not know what was causing his tremors. His symptoms were ultimately chalked up to excess fluid of the brain due to natural aging. He had continued physical therapy & following surgery to drain some of the fluid he exhibited temporary improvement, but the tremors returned & when they did they were more severe.

In January of 2005 we visited him in the hospital in Portland, Maine to say our goodbyes. I told him the two names we chose depending the sex of the baby, & he mouthed to us that they were "beautiful". In June of 2005, approximately five months following his passing, our healthy baby boy entered this world.

Today, December 5, 2012 would have marked Poppy's 95th Birthday. Although he never met H, or knew I was carrying a boy, he did know he had his first great grandchild on the way & that in itself means more to me than I can put into words. It's an invisible bond that I am so fortunate to carry with me. Little did we know, that the year following Hayden's arrival, we would also learn that my son & grandfather share a very special gene as well.

Hidden in his DNA, & oddly in his very own name, Dr. Francis X. Rosner carried the FX gene. Four out of his seven grandchildren had a 50% chance of receiving this gene, but I was the sole lottery winner of this special X. This would all be revealed through our son Hayden, when he was diagnosed at 17 months of age.

As of last week that was six years ago. Although I can not begin to summarize the education we have gained during these last six years, I can tell you that it includes an answer to Poppy's symptoms called Fragile X-Associated Tremor/Ataxia Syndrome... commonly known as FXTAS (pronounced 'fax-tas'). FXTAS is a trait of male carriers of fragile x.

You know, to an extent I believe in the idea of a presence watching over all of us. Poppy, if this is true you will already know that lately we've had a difficult time with Hayden. Even just the last couple of days have been pretty rough. I thought about venting via my blog, but this time I decided against it. Writing is often therapeutic for me, but other times it feels like I'm reliving something difficult & I'd rather move on.

We're still going through the process of finding an appropriate treatment for Hayden, to help with some of his difficult behaviors. (Including another appointment with a new specialist tomorrow, actually.) But I need you to know something. For every bad day, every challenging behavior, every meltdown, & every tear that is shed... it is all outweighed by an immeasurable love inside of Hayden. And I wouldn't be able to appreciate such a beautiful, rare perspective if it weren't for you.

Not all fragile x days are bad days. Most of them are filled with moments like last night, when I sat down on the couch & casually said to no one in particular that I was cold. Hayden was in front of the TV watching a movie in his PJs, with his Thomas the Train blanket. He walked over to me in response, placed the blanket on me, & then sat in my lap.

I have a son who keeps me very warm from the inside out, & we have you to thank for that.

Happiest 95th Birthday to you, Poppy. I hope you're on the balcony in Palm Beach in that yellow chair... relaxing in the warmth of the sun... listening to the ocean behind you... & enjoying the best back scratch you ever had in your life.