March 23, 2013
As I approach fifty (more rapidly every day it seems), my mind has naturally begun to ponder what I’d like to see accomplished in the world of autism during the last half(?) of my existence as I shoot for that three-digit lifespan. I have personal goals of course (learn how to use my phone, drop those last baby pounds from 2007), but quite honestly I have my own “autism wish list” as well.
Some of these stem from personal experience, some are garnered from the news, and some, to me, just seem to make perfect sense. In honor of autism awareness month, which is coming in April, I’d like to share a few points from my autism bucket list with you, and invite you to respond with yours as well. As Ms. Clinton said it takes a village (or in our community’s case, a galaxy), and I’d love to know what changes you’d like to see in the autism landscape to come.
1) First, since Virginia didn’t recognize Justin’s autism diagnosis back in the day (which forced me to be his primary therapist thirty hours a week for almost a year-and-a-half), I’d love to see legislation in Virginia which requires that adequate Early Intervention therapies be offered to children under three who are diagnosed with autism.
2) Help introduce legislation requiring every state to require teachers to take an autism certification program prior to teaching children with autism so they are familiar with this population. Duh.
3) Have a viable, appropriate employment opportunity for every differently-abled adult out there who wants one. Amen.
4) Have a viable, appropriate residential opportunity for every differently-abled adult out there who wants one. Double amen.
5) Have Tina Fey and Amy Poehler star in my autism play (okay, this is the fantasy wish, but a girl can dream).
6) See the Autism Speaks Autism Treatment Network sites become the go-to place for autism diagnosis and treatment in our country and Canada.
7) Get my books published and donate fabulous amount of money to Autism Speaks and Parents of Autistic Children (again, a girl can dream BIG).
8) Have Fairfax County Virginia schools adopt my anti-bullying program (and have the opportunity to travel down there to help implement it!).
9) See my beautiful eldest boy reside in a place he loves, and have access to riding those horses he adores.
10) Watch as Zachary is sworn in as President (or becomes a fireman, his newest passion, either way we’re good).
Thanks in advance for your contributions!
April 23, 2012
I’m fidgeting, and as I stand in the wings with my actresses, preparing to take the stage for my autism play, I admonish myself to stop (using my own “teacher voice” no less). Gary Weitzen, Executive Director of POAC Autism Services, is wrapping up his introduction, and I’m anxious to be up there and get this show literally on the road. I take a few deep breaths, solicit the last remnants of saliva from their hiding places in my mouth, and attempt to clear my head.
I recall my “performance mantra”, which is SEL (“Slow down Jersey Girl/Emote, woman!/Look at people on occasion”), and feel my uncooperative stomach settle. I remember the trick I’m using to get through the play without bawling continuously, which is to conjure up clips with female comedians to my stressed-out brain. Melissa McCarthy during the bathroom scene in Bridesmaids easily comes to mind. Kristen Wiig holding a raw chicken on Saturday Night Live, and losing it, follows. An Amy Poehler and Tina Fey chaser in, well, anything, concludes my comedic quad.
Gary wraps up his speech, takes his seat, and I hear the strains of my brother’s music emanating from the sound board backstage. We reach the song’s first crescendo, I gently tap my friend in front of me, and we head for the stairs.
Ready or not, it’s showtime.
This past Saturday night, through the graciousness of POAC Autism Services,I had the great fortune to both act in and produce a play I wrote almost a year ago. It’s entitled “Raising Autism”, and its stories are shared through the medium of three mothers reading from faux diaries, laying their experiences with their children bare for the audience, and themselves. I came up with the idea last summer, and thinking that attempting fiction for the first time while entering middle-age might not be a realistic goal, I didn’t take it too seriously. I had a desire to create a fundraiser for POAC that could be easily replicated down the road, and an urge to divert a bit from my path of writing about my daily life with two boys on the autism spectrum, but truthfully, I didn’t really think I could do it. I’d wrench myself away from my pool every morning the boys were in summer school (the horror!) and write an entry or two, then leave it alone for a few days to write for my blog.
About six weeks into the summer I realized I had half a play, and my husband said it was pretty decent. Who knew.
Ten months, a lot of rewrites, (and a profound amount of begging for donated services later), we’re here, and I’m thrilled to say minus a few sound issues (there’s always something, it’s THEATER), the night went beautifully. My friend and mom of two on the spectrum Babette Zschiegner truly threw herself into her part, and got laughs in all the right places. My other friend and actress Bobbie Gallagher, also the mom to two with autism (I know, there’s a theme here) brought a raw emotion to a role I frankly am too chicken to play, and simply dominated the stage. Given the sniffles (and chuckles) I heard in the audience I think my slightly sarcastic college professor was well-received, even down to her anti-religious leanings and the difficulties of raising autistic twins with her partner back in the early nineties. Although I could only see a few legs from the front row (thank God for the black void of extinguished house lights), I’m told the audience was truly invested in the performance, and for that I am eternally grateful.
After all, I gave up a ton of tanning hours for this little production. It’s nice to reap some reward.
There’s one performance left this coming Saturday April 28th, at the Jersey Shore Arts Center in Ocean Grove, 8:00 PM. If you’re interested, you can purchase tickets off the POAC website www.poac.net, or pay in cash at the door (the theater seats 600, I promise you’ll get in). All proceeds go directly to POAC Autism Services. I promise, if you either have or teach a child on the autism spectrum you’ll find something in the play to relate to. If you don’t, I can guarantee you’ll learn something that evening.
And if you make it next weekend, on behalf of POAC and all the families it serves, and this mom/writer as well, we thank you from the bottom of our hearts.
January 4, 2012
That’s how each segment of my play starts, a script I wrote this summer when I was able to summon the maturity to ignore my pool and whatever Game of Thrones novel I was reading at the time. It’s the story of three mothers and their experiences with their autistic children, all of whom hail from extremely diverse backgrounds, and all of whom are raising children with autism who reside on various parts of the spectrum. One woman is a young mother struggling with her marriage as well as her son’s diagnosis; one is a rather devout Jew and single parent; and one is a college professor raising adopted autistic twins with her life partner.
I’ll confess, the lesbian is my favorite. She’s quite sassy.
I’ll also divulge to you that this past summer nobody was more surprised than me that I could write fiction. My last foray into this genre was a rather pathetic short story penned so long ago (the 80’s) that it is most assuredly residing in a landfill rather than a recycling bin. The truth is, the idea to write the play at all was in part born out of a desire to create a fundraiser for Parents of Autistic Children (POAC), a local and fabulous autism organization, and in part to promote another endeavor I’ll be speaking about at a later time. Frankly, I was simply thrilled I could do it, and equally honored that POAC agreed to let me produce it for them.
I’ll be announcing dates soon, and there may be multiple venues (as to my non-faux-humble surprise a few “real” theaters actually seem to be interested) but I’ll wait to formally announce until everything’s set in stone. I’m hoping to put on a few shows here in Jersey, and a night or two in DC, the city I consider my second home. Of course, when Tina Fey and Amy Poehler beg me to be a part of such a monumental event, I’ll graciously concede, and I’m certain Broadway will open its arms to me as well.
Tina and Amy might have a small part in that too.
When the “tour” is over, if it turns out that someone other than my husband liked my play, I plan on making my script available to anyone who’d like to use it as a fundraiser as well. There will be some rules (it’s a play about autism, of course there will be rules). Any individual interested will have to show proof of where the money’s going (I don’t want to find out down the road my writing contributed to someone’s granite kitchen countertops). Said individual will have to promise to read my words as written (if you have some differing opinions to express, write your own play). Although this isn’t a deal-breaker, it would also be lovely if whomever appropriates the script mentions I wrote the thing, and informs me as to how much money they banked for their organization.
And if you’re thinking you don’t have time to put on a play to support your favorite autism organization, trust me, this little theatrical contraption couldn’t be easier to produce. There’s no memorization, no dialogue, and no sets. Hell, there’s really no movement required at all. If you have a living room, a few chairs, and three women who can read, you’ll have yourself a free fundraiser.
Coupled with my goal of relaxing more in 2012 is my desire to throw things out to the universe a bit more, and I’m so excited to give “the theater” a try. I’ve already begun to learn about important things like building permits, fire codes, and soundboards. I’ve acquired my fabulous autism-mom/actresses, Dr. Robyn Leitner, and Babette Zschiegner from Peace with Autism. Most importantly, I’ve begun shortlisting songs for us to walk onstage to (most of my husband’s suggestions were inappropriate, I sense a contest on Facebook in the imminent future). So join me in April (dates TBA), and support POAC, a wonderful autism organization.
I promise, you’ll laugh a little, and you’ll cry a little. Thanks in advance for your support!
December 7, 2011
It’s the Monday after Thanksgiving, or the day I lovingly refer to as “Deliverance”, as my children have been in school approximately five minutes over the past three weeks. It’s not that I don’t love being with the little devils, but there is only so much one can do with the moderately autistic child who only likes three things, particularly in November in New Jersey. I knew I’d hit my wall this past Sunday afternoon when Justin even began rejecting computer time, and I looked at the clock thinking it was approaching 3:00, and we hadn’t even hit 1:30 yet. When that 30 Rock movie theater scene with Tina Fey and Dean Winters floated through my mind for the sixteenth time (you know, the one where they’re watching The Hours and both comment simultaneously it should be called The Weeks), I knew vacation needed to end soon.
And this morning, gloriously, it did. God bless IDEA.
I really shouldn’t be complaining, as things have been relatively calm this month, and we’ve endured entire years here where a tooth extraction sans Novocaine seemed preferable to even one more minute in this house. Everyone was fairly mature (including the boys’ parents), and the kids got along extremely well. Even though Justin had an off day on Thanksgiving (he made it seven minutes at the dinner table before I had to follow him for “surveillance”, but on the bright side, there was no time to overeat), I’d say the interlude was a success. We’ve got (in theory) four straight weeks of blessed school coming up, most of our fall doctor visits, IEPs, and conferences concluded, so it’s time to relax a bit.
You know, except for that little “Christmas thing” coming up.
So I hope you’ll indulge me for a moment if I brag a bit about something I learned in one of those recent school conferences, a little tidbit about Justin which was shared with me by his lovely teacher. After we settled into our seats and I congratulated myself on remembering to bring the “conference muffins”, we began to discuss his academics. Despite moderate autism, Justin’s reading almost on grade level, spells like a champ, and as for math, we’ll just say he takes after his mother. We then moved on to behaviors, where he continues to excel, which makes me just as proud as his academic progress. Finally, his teacher shared with me a little anecdote that sort of says it all about Justin, which is not easy to do.
One of the most challenging aspects of teaching my eldest has always been how quickly his reinforcers lose their appeal. Although the staff at Justin’s school is very savvy as to what the “flavor of the day” is, it seems that one day a few weeks ago Justin became quite agitated while waiting for his reward, one his aide was unable to identify. Given that he’s not at leisure to roam around the room whenever the mood strikes him, she encouraged him to ask for what he wanted on his iPad, even prompting him to try to spell it. He called up the keyboard, but was stymied. She then said he smiled, searched through pages so rapidly she had no idea how he’d gotten there, and found the icon that most represented what he desired. It was a chicken, one which when he pressed it, obligingly said “cluck”. He then stood up at his seat and pointed halfway across the room at a timepiece that apparently had caught his eye.
My kid wanted to play with their fancy-schmancy clock, and that’s how he figured out how to get his needs met.
The two of us spent a few minutes reveling in just how clever that really was, particularly since his mother spends quite a good portion of her own day engrossed in word retrieval, and is not nearly as successful as her son. I’m not sure what aspect of this pleased me more; that my son used his intelligence rather than a behavior to achieve his prize, or the look of incredible pride on his teacher’s face when she recounted the story to me.
Luckily, I don’t have to choose.
I hope you both survived and enjoyed your long week-ends also, and are able to dig in to a few consecutive weeks of relative calm in your respective abodes. With winter break looming (perhaps it won’t snow up to my collar bones this year, a girl can dream), I’ve got a few things to accomplish before school concludes once more, as I’m sure do all of you as well. Here’s wishing for a healthy, snow-free December.
And here’s hoping we all manage to get our needs met too.
November 28, 2011
As I’ve mentioned before on this blog, since 2010 things have been going pretty well chez McCafferty (I had hoped the tide would turn with President Obama’s inauguration, but we had to wait another year). Everyone eats now, and for the most part everyone sleeps through the night as well (except for me). In general, that high-level angst we were enveloped in now seems only in evidence when Zach is not getting what he wants EXACTLY how, and when, he wants it. Fortunately, since I am a veteran teacher, this is a situation I usually feel extremely capable of dealing with on a daily basis.
When handling Zach, the fabulous Tina Fey quote from Prayer for a Daughter, “I will not have that Shit. I will not have it”, often comes to mind.
Even with the impending end of the world (again!), and the fact that scarves are the style and I still can’t figure out how to wear them, we seem to have reached a lovely little détente with autism in this house, an acknowledgment that it still lives and breathes amongst us, but perhaps isn’t the main things we talk about anymore. I believe last Tuesday, for thirty-seven consecutive seconds while I was making dinner, I actually forgot my kids had it.
Then Justin asked me to rearrange his book shelf for the five thousandth time that day, and I remembered.
The truth is, I’ve slowly realized over the past two years that I’m truly enjoying myself and having fun again, which was pretty much my main goal in life for thirty-six years before I became a mother. I’ve had to take some baby steps to return there, fought off a few mild panic attacks after having a good time for more than five minutes, until I realized my progeny were actually happy too. For me at least, it took a while to claw my way out of what Susan Senator so aptly named “siege mode”, a not-so-fun way of life within which the McCaffertys dwelled for a good half decade or so.
Trust me, I am much more pleasant to be around now. Just ask my husband.
Back in what I lovingly refer to as “good times” (or that year-and-a-half in Virginia where I crawled around after my autistic toddler six hours a day trying to get him to sign “ball” because our Early Intervention services sucked), I found myself working side-by-side both with my son, and that famous cycle of grief. I can clearly remember one particularly chill fall day, where I’d spent an hour with Justin building a ball “thingy”, soliciting great signs and extreme enthusiasm from him with ease, a double coup. When we completed our masterpiece Justin went to attach the final ramp to the tippy-top, and when he couldn’t make it click he became immediately distraught. Before I could intervene he simply smashed the whole thing to the ground, looked at me with what I swore was unbridled outrage, and threw himself to the ground in a tantrum I’m certain they could hear at the White House.
Through the caterwauling I recall thinking I’d missed Oprah’s Favorite Things for this. I admit, I was bitter.
I remember, as I tried to scoop up all the tiny plastic pieces I would certainly step on later, that I knew a year into the “therapy wars” that this wasn’t enough for me anymore. It had been twelve months since Justin’s diagnosis, and although he’d actually made a lot of progress in a number of areas, it was clear to me he wouldn’t be one of those kids who “recovered”. I also realized over the course of that year I’d made a mental shift, perhaps out of necessity, or to save my sanity. I was no longer striving to completely eliminate Justin’s layers of autism, banish them from sight.
I simply wanted the kid to find his damn happy place. Was that too much to ask?
So, I returned to that famous grief cycle and struck a bargain with the universe (nothing specific mind you, I like to keep my options open), one I will honestly confess was nothing but a win-win for me, which is how I like things. I made a promise to myself that if my child ever smiled more than he cried I’d move beyond therapy and folding laundry, and actually do something for myself, and the autism community as well. These things included (but are not limited to) writing a book/blog, creating some kind of fundraiser that could easily be schlepped around, and finally, a project me and my mom could implement within the public schools. So far, I’ve accomplished step one (at least five people RAVE about my unpublished “back-story”), and the blog is simply a joy. So, in an effort to keep true to my promise this summer I moved on to step two, and in my “free time”, I wrote an autism play.
Which, in case you weren’t aware, is exactly the next logical step for an ex-French major/housewife with one publishing credit to her name to undertake.
It’s a simple little endeavor, one which requires the actresses just to sit and read a script out loud, because at this point in middle age, I’m pretty certain I’ll never memorize anything again. I’m shooting for putting it on in April during Autism Awareness Month, even if it ends up being in my house (and trust me, that’s a serious possibility). I’ve had the great fortune of finding out last week that POAC, Parents of Autistic Children, has agreed to let me “produce” it for them as a fundraiser. If we can get people other than my mommy to show up to this play (she really liked it!), perhaps we can generate a little revenue for a great organization, and a great cause.
I’ll be writing about this periodically, so for now I’ll be keeping more details under wraps (I know, how will you survive the suspense?), but I look forward to taking you on my journey of securing actresses, begging people to use social media/witchcraft to promote this thing, and finding a venue bigger than my living room. Trust me, I’ll need help with a title (I suck at those), and a great song for us to walk on stage to (thinking “Lady Marmalade” from Moulin Rouge is fun, but perhaps a song about prostitutes might be a wee bit inappropriate). In advance, I am grateful for all the suggestions and support I know you will show me.
But most of all, I’m simply grateful for my sons’ smiles, and for enjoying the absolute luxury of trying to fulfill a bargain.
May 15, 2011
Last week, I had the profound and fortunate pleasure to escape to Mexico with my husband to celebrate our fifteenth anniversary. Due to the grace of my mother, my father-in-law, and our babysitter, Jeff and I were able to loll around in the sun for five consecutive days, where my most difficult decision daily was when I could start imbibing the “pretty drinks” and not fall asleep by 8 PM. We happily divided our time between beach and pool, napped, and people-watched for hours. I ignored my emails, and the only time I thought about the words “Face” or “Book” was when searching for the lovely countenance of the man bringing me my next “Mango Loco”, or while reading Bossypants by Tina Fey, our comedic national treasure.
For almost a whole week I was technologically Amish. It was bliss.
We planned every detail of the trip for months, remembering to clear our schedules several days prior to boarding that godsend of a plane because we’ve noticed over the years that something, or several somethings, always conspires to occur just before we leave. One time just days before one of our fairly frequent trips to Vegas to stay with friends, Jeff took a tumble down the stairs and broke his foot, which put a severe damper on our disco nights. The following year, Justin came down with a severe rash all over his body that turned out to be “hand, foot and mouth” disease (I actually looked at his pediatrician and asked her if she was making the diagnosis up just to mess with me), and for the next seventy-two hours we watched anxiously to see if several hundred red bumps would do us the honor of disappearing.
Ironically, this time around everyone was healthy, but it seemed as if the gods were conspiring against us anyway. Jeff got a flat tire while trying to cram in food shopping the day before our departure. We finally realized that funny odor in the pantry was mouse droppings, and my brave husband dedicated four hours on Sunday trying desperately to eradicate that succulent smell before we left. I went to bed before the glorious news of Osama bin Laden’s death, but my husband spent most of the night wondering if we would still be able to depart. We were, and we did.
And I admit, it was fabulous.
Of course, not every moment of the trip was perfect. I burned a quarter of a boob when my suit apparently “shifted” in direct sunlight (the only time I’ve gone topless was for five minutes in Greece in 1988, after which my Puritan ancestry kicked in and started screaming for me to “remember decency!”). The night we ate in the “French” restaurant our waiter proudly proclaimed our aperitif to be “chicken fingers with sauce”, and while my husband beamed with anticipation I heard the strangled cry of a million Frenchmen as they screamed “Non, c’est pas vrai!!!” Sadly, we once experienced three entire drops of rain one day as my groom and I walked along the mostly deserted beach together.
Yes, I’m just kidding with that last one.
I could tell you that this vacation we try to make every five years, as we attempt to celebrate the “fives” and “zeros” of our union, is important because we desperately need the time together away from our children just so we can breathe, and that would be true. I could impart to you my adamance this type of trip occurs at least twice a decade for us because I’m neither sure how long I’ll have the generosity of my mother’s help, nor certain if there will come a day before Jeff and I turn eighty that Justin will not be solely under our care. I could share with you that I simply appreciate the opportunity to sleep four nights a year.
Hell, I could tell you that sometimes, I just like some silence.
All of the above is true. But the real reason this vacation is so crucial to us is because it’s the one time of year we feel like we actually have choices in our daily routine, because with two children on the autism spectrum, our lives don’t leave us much opportunity for wiggle room. Honestly, for several days, we simply reveled in the welcome absence of rules, the constraints that autism often insinuates into our everyday existence. I didn’t have to plan seventy steps ahead of an outing to anticipate what might strip my chances of success while bringing Justin out into the community. I wasn’t forced to recall which spot on Zach’s favorite plate always welcomes the ketchup, or be faced with a tantrum of such inappropriate proportions I’d rue the day the condiment was invented. I didn’t have to think about how autism ordains Justin’s life, how it will ultimately result in his requiring lifetime care, half of which will transpire without me.
Frankly, for five days, the only rule was that I didn’t have to think.
I realize how lucky we were to have this opportunity. I am fortunate to have the luxury of a stable partner, the understanding of my father-in-law, the stamina of my mother. The word “gratitude” does not begin to convey how grateful I am for this confluence of circumstances, this perfect storm of luck that conspired to enable us this break from an often extremely stressful life. Trust me, most of the year my “downtime” is spent sitting in the car reading for fifteen minutes while I wait for one of my kids to get off his bus. It’s not always happy hour around here.
But for 120 blissful hours (not that I counted), it was. I just want to say thanks to everyone who made it happen, and for all who wished us well prior to departure. I’ve traveled to a number of countries at this point, and I have to say I’ve never encountered a people as genuinely warm as the residents of the Yucatan Peninsula, and I certainly hope to see them all again (especially the reincarnated Michael Jackson who performed for us, who knew the legend is actually alive, just living in Mexico?).
I’d like to add one final note to my husband, a man with whom despite the oft-insanity of our lives, I still enjoy spending time.
Love you, hon. See you in five years.
December 29, 2010
I’ve become a technology queen this year, what with blogging, importing pictures from both our own files AND the internet, as well as mastering the art of the hyperlink (Mark Zuckerberg is running scared, mark my words). My husband has been a (mostly) patient instructor in all of these areas so that I might wear the crown rightfully, has generally ignored me as I’ve complained that the kids sucked out all my technology brain cells at their births, and has instead encouraged me to keep on trying no matter how seemingly insurmountable the task at hand. I’ve got a few skills under my belt now (watch breathlessly as Kim learns to download her own photos in 2011 AND send them to the right people), and have since felt a sense of confidence return to me that this old dog can learn a few tricks, and perhaps recapture those she enacted with ease before her sons permanently incapacitated her memory.
Always blame the kids when feasible.
I’ve been on a roll lately, and since I had some time left before my little one came home one day, I decided to knock one more technological item off my list in my remaining minutes of freedom before I donned the mommy mantle once again. It seems I’ve ignored my bookmarked links, which had subsequently mutinied against me and become an unwieldy mess (it takes me three full minutes to scroll down to my own blog, something has to go). So, I decided in the spirit of year’s end to downsize, a skill I’d actually managed to retain all these years (after Jeff reminded me right-clicking was NOT a fast-track to erasing my entire hard-drive). I grabbed the good chocolate and got down to business, reminding myself this couldn’t take THAT long as I had employed the delete button on numerous occasions since Justin graced us with his presence (okay, I’d done this twice since he’s been born, but who’s counting).
As it turns out, when you haven’t conducted more than a light weeding in seven years, and there’s several hundred bookmarks mocking you, you should really prepare for quite a walk down memory lane. In my own defense, I did leave a lot of these sites as visual prompts for when I was writing my manuscript, but since I finished my tome almost a year ago I don’t really have a lot of excuses left for my laziness. So I encouraged myself to indeed let go, and then I got down to business, deciding to go in chronological order for old time’s sake.
We’re just a bastion of spontaneity chez McCafferty.
As I banished each site to the etherworld, I briefly placed myself back in the time period where I had felt it necessary to have that information, perhaps even deemed it vital. With hesitation, I recalled the fear I’d felt in those last few months before Justin’s diagnosis as I clicked to that first excellent site I’d discovered, the one regaling me with early signs of autism that seemed to embody so much of my oldest’s son’s behavior.
I recalled the desperation I’d felt when searching for words to reveal to me the mysteries of autism’s causes, and my frustration as the word “unknown” seemed to mock me at every turn.
Still annoyed delete.
I smiled ruefully as I perused the half-dozen screens promising refuge from the scourge of colic, none of which alleviated a single symptom in my boy.
I didn’t even bother opening the myriad pages describing different therapeutic approaches all touting progress, because we’ve immersed ourselves in ABA, and it’s made a profound effect upon my child’s behavior.
I right-clicked on numerous sites promising the best party supplies EVER for a one-year-old’s under-the-sea theme birthday party, and remembered how I knew in my soul this would be the only party Justin would ever have where he was just a difficult child, not one with a diagnosis as well.
Sigh, and delete.
I laughed as I purged the site revealing the caloric content of Starbuck’s lighter liquid fare, both for my idiocy for caring, and my remembrance that for many months that walk down that long hill with Justin for a break from ABA was my (and truly, our), single daily saving grace.
I briefly opened a few of my bookmarks related to the “autism diet” to see if anything new would hit me, recalling how I concocted homemade chicken nuggets from scratch for my reluctant eater for over a year, despite my cooking disability. I remembered my despair when it became apparent Justin was not a “responder” to his new food repertoire, and my elation when the removal of gluten and dairy seemed to appeal to Zachary’s troubled tummy.
Somewhat grateful delete.
I had to pinch myself from rereading all of Doc Jensen’s insightful LOST missives, reminding myself I had a kid getting off a bus in ten minutes and that this iconic show was indeed, despite my devastation, over.
Wistful, soul-sucking delete.
I brutally purged the sites where we ordered the pH strips we used to discern if Justin had left even a drop of urine in our toilet bowl during our year-long potty training debacle, the flimsy papers we’d used in our hopes we’d one day reward him for a single success before he turned fifty.
Next to go, sites which for a small fee would absolutely GUARANTEE our son’s recovery.
Pissed-off, magnificent eye-rolling delete.
And last, but not least, the site with the fabulous review of Speed-the-Plow, the Broadway play we used as a brief escape from our youngest’s regression last year, only to be told upon arrival our boy, Jeremy Piven, was not available to play his role due to illness from mercury poisoning.
For this one, I used the Tina Fey/Amy Poehler SNL “REALLY?!?!?” delete.
The entire activity was as therapeutic as I imagine a good cleanse to be (nope, not old enough for that colonoscopy yet, thank God), and I managed to conduct it in enough time to finish that chocolate and prevent those bus drivers from returning my kid to school. It’s done. Those reminders of the past are gone. Those issues from our past are gone. The only thing remaining is both my gratefulness at having surpassed these problems, and my glee at having remembered how to scourge my bookmarks ALL BY MYSELF.
And for those of you looking to purge, to relieve yourselves of at least some unnecessary worries as we near year’s end, I’ve got one small encouragement for everyone out there.
Just hit delete.
November 9, 2010
I don’t know if you had the opportunity to see Night of Too Many Stars on Comedy Central recently, but if you missed it and you have the chance to view it, it is well worth your time. For the past several years an ever-increasing number of A-list stars has come together at the Beacon theater to raise money for autism education (in the Garden State no less!), and I have to say that each time the show has gotten more and more hilarious. When it first began I was so grateful some brilliant person harassed that many “good” famous people to help raise money for educational programs that I would have laughed at anything, but I was pleasantly surprised to see I didn’t have to talk myself into the broadcast being funny. This year’s event was particularly amusing and I won’t ruin if for you if you’re going to catch it, so here’s your warning for a SPOILER ALERT. This past week in one fell swoop I got to see my girl Tina Fey promote her own “calendar”, watch a woman pledge $15,000 so that Chris Rock would verbally bitchslap her ex, and revel in George Clooney’s dexterity in signing a trilobite twice for charity for some lucky (and loaded) woman.
It should have been me. Deep, deep, sigh.
Anyway, if you’ve got a couple of hours to kill (and we all have so much free time,) take a peek at it. If for no other reason, it’s both a lovely and sober reminder of how mainstream the desire to help people with autism has become.
And yes, there’s a bit with Triumph the Insult Dog, but I swear, there’s some really, truly, funny people too.
May 26, 2010
I’ve been sad when other dramas have departed the big screen, none more so than when Sex and the City went off the air six years ago. I remember that evening, recall telling my toddler that “short of him stroking out Mommy was going to see this episode live, so he’d better behave and sleep tonight” (I am just that kind of mom). I was disappointed and mildly disturbed at my lack of closure when The Sopranos went off the air, and my mourning for Six Feet Under was mitigated only by viewing the second last best fifteen minutes of a television series EVER (thanks Alan Ball, genius emeritus).
I also spent ten minutes sobbing in my husband’s arms when I realized not only was Jimmy Smits dying on NYPD Blue, but the little boy who spoke to him in his dreams was his unborn future son, which really put me over the edge (I know, that wasn’t a series ending, but I felt compelled to get that in here somehow). After my children came along I found I didn’t get out much anymore, so good television series, and fortunately there have been many as of late, have been a source of escape for me. I’ve relished every minute, looked forward with unswerving loyalty to every SATC movie that will ever be made, and contributed to every actor’s third luxury home by owning every DVD of each series. I am a dedicated fan.
And then, there was Lost.
Lost aired when my family and I were still living in Northern Virginia, just weeks before our lives would be changed forever by the brusque, slightly irritated declaration of “autism” by our son’s pediatrician as he shoved the names and numbers of some developmental pediatricians into my shaking and outstretched palm. The weeks that followed rendered his parents lost indeed, as we struggled to figure out what to do, who to call, what therapies to choose, what this meant for our lives, and what this meant for our son’s future. My husband, fortunately still employed, got to put it all behind him for the lion’s share of his day when he went to work. For me however, it was continuous, consecutive fourteen-to-sixteen hour days of chores, therapy, general child care, and the sinking feeling that this intruder into our lives was permanent, that my son would not be one of the fortunate crew who would live with his ailment yet be fortunate enough to lead an independent life. Lost became my invaluable escape from autism, and the knowledge that at least twenty-two hours of the year I’d have to stretch my brain for something other than the ramifications of my son’s neurological disorder was a great comfort to me.
I was not the only person captivated by the rich story lines, intense character development, and tantalizing mythological references that comprised the television show. Even famous people have been seduced by its magic, as when Rainn Wilson outed himself as “gay for Richard” after that particular character’s backstory episode aired (I must admit, as much as I loved gazing at those miraculously unlined eyes I reserve my gay for Tina Fey – Mean Girls and 30 Rock will forever have my heart, as will that Brownie Husband segment on SNL). Lost has been viewed and revered by millions, and I’m proud to count myself and my husband as part of the flock. I will miss all of it dearly, from Jeff’s and my unwavering commitment to view every episode together, to our discussions afterwards as we pretended to understand what had transpired, as well as when we fooled ourselves that we could dissect the missives of the brilliant Doc Jensen on EW.com for hidden meaning the following day. We once tried to play “drink mythology” as a way to reward ourselves for figuring out literary references as an episode played out, but when we quickly realized our palates would remain primarily dry we ditched that approach, just laid back, and took it all in. It’s been a wild ride ever since.
It hasn’t just been the excellent writing, the consummate acting, the eye candy of Matthew Fox or Josh Holloway, or those fabulous one-liners intermittently dropped by Jorge Garcia on his loyal viewers. There have been the themes to explore, a handful of which I feel pertain strongly to my life as well. Sacrifice. Redemption. Choices. Faith. Producers Lindelof and Cuse have included something for every viewer, should they care to drink at the trough.
All of the characters on Lost had to make gut-wrenching sacrifices in order to grow. Clearly, as any good parent of a child with or without a disability does, my husband and I have made sacrifices too. Our relocation to New Jersey from Virginia somewhat stalled my spouse’s career, and definitely tanked mine, at least for the time-being. We left behind a fairly rocking social life for two almost middle-aged people with a child, and found it’s taken almost four years to begin to build one again. Then of course there’s the financial aspect of autism, where we pay out-of-pocket for every therapy our oldest has, because our adopted state south of the Mason-Dixon line has yet to get on board in the insurance wars. We’ve given up stuff. The truth is however, we’re parents. It’s our job.
I’ve found, through sacrifice (which trust me, I was not inclined to make too many of prior to giving birth), that I am a kinder, gentler person. Letting go of my singular desires for the good of another person, particularly a child I adore, has redeemed me from the somewhat career-obsessed/what are we doing Saturday night individual I once was in my twenties and early thirties. Having a child with a major neurological issue forced me to dig deep into my soul, question everything I thought mattered. My son, and his autism, redeemed me in a way, encouraged me to make better decisions about how I spent my time, more insightful choices as to what would define my life from now on. He’s made me a better person.
As I’ve watched each character on Lost struggle with the choices that have lead to redemption for many of them over the past six years (many were engaged in battle in two worlds simultaneously, I should stop complaining), my husband and I have endeavored to make the right ones for our son, then our sons, then our entire family as we’ve taken this journey. I’m not certain the choices we’ve made have always been correct. Some days, just like the characters on Lost, I think we haven’t even come close. I’ve witnessed the actors fight to exit the island with all of their will, and sat mesmerized as many of them realized departure wasn’t the answer, that escaping a geographical location would not release them from their inner torments. I mirror their conflict when I contemplate how I regard my sons’ “extra”, when I attempt to consolidate my acceptance of their plight with my understanding that I will never be completely at peace with it. I understand it is ultimately my choice as to how I view this disorder and how it manifests in my family. It may truly be the sole event over which I have any control.
I have to admit that the one theme that has resonated most with me over Lost’s tumultuous journey is the one embodied by the good doctor, Jack Shepherd. Watching his tenuous transformation from a man of science to a man of faith for more than half a decade has enabled me to define my concept of faith, and to whom I bestow it upon. Back in the day, my faith was unquestionably linked to my parents and grandparents, then as I grew older came the subtle shift to friends and husband. Ultimately, my choices have lead me to a greater faith in myself. This feeling, this certainty, is stronger than any I personally have ever encountered in my Presbyterian parish when I was growing up, or later in the great cathedrals of Europe as I prayed and waited for a feeling, a moment, even the slightest sign that indeed something was out there greater than myself. I tried. It never came. It hasn’t to this day.
But what has evolved in me is a confidence that although there will be bumps along the road of life – polar bears, Smoky, a disastrous detour of a storyline – eventually my husband and I will figure it out. Sometimes it won’t be pretty. I have not been above imagining a sideways world myself, one without sleepless nights, the vagaries of intermittent OCD, and a seemingly endless supply of poop. I had twenty months of “normal” with my second son, and although that experience was difficult at times too, it never carried with it the emotional pitfalls that an autism sentence inherently conveys, and for me that has been the most difficult concept of all to transcend, the idea that this is permanent. There is no escape for this family, no plane that might or might not be blown up to whisk us away from autism island.
I have learned, however, that a fairly happy ending is indeed possible.
I know there are naysayers, but for this fan, I now feel this is THE BEST ENDING OF A TELEVISION SERIES EVER. No, not every mythological question was answered, and we’ll never know how long each of the characters lived in their parallel universe, and how they died. I do know however, that as we watched Matthew Fox’s eye close in the only possible last scene that could have given me closure, my husband and I had already been bawling for twenty minutes and had vowed at least six times to become better human beings.
I hope it lasts.
So for now I’ll say goodbye to the show that has followed my family’s progress from downright miserable to most days enjoyable, and at the very least, tolerable. I will count the months until the six season box set is made available for my viewing pleasure, and will voraciously explore every extra, deleted scene and actor’s chat made available to me, save the choice to be regaled by the aforementioned options in Spanish. I will hope for yet another hit show or movie for Matthew Fox whose work I’ve enjoyed since his Party of Five days, and pray that no other network will feel compelled to try to emulate Lost’s success with some flimsy replica which I will be forced to disparage. Some things in life, and in art, are simply epic, and cannot be repeated.
To the writers, actors, directors and producers of the show (and the craft services employees who kept them happy), I bid a fond adieu, and my thanks for six incomparable years of entertainment.
Your fans, are indeed, lost without you.