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.
March 9, 2011
He’s uncharacteristically quiet, my boy, as we wend our way through the busy streets of our town, mid-afternoon on a March weekend. Justin’s been “sniffling” for the past forty-eight hours, although everything else about him until today has remained the same- happy, energetic, despondent when I refused to take him somewhere fun after school (“no Justin, not EVERY day here is Disney”). Until recently there has been no evidence of fever, none of the lethargy or crankiness that signals something else is brewing in my son’s body other than spring allergies, or a mild cold. Due to his silence however my “inner voice” is now clamoring to get him checked out, and when it calls, I obey. We are fortunate enough to have a great clinic associated with his pediatric group that’s open both days at week’s end, and although the wait-time might be akin to when I acquired my driver’s license in DC, I sense we are required to pay a visit.
Normally this would be the fifth or sixth time I’d make this run during cold and flu season, but ever since Justin had his ear tube surgery five months ago, he has managed to avoid most illnesses. There was a quick cold a month or two back that he was able to banish over the course of a week-end (you know your autistic kid loves you when he permits you to shoot saline water repeatedly into his nostrils), and since then, nothing. I figure it’s his turn now, as the wonderful ENT we patronized told us the tubes wouldn’t eradicate his chances of contracting the infections, but should certainly minimize them. It did, and I can’t even say I mind that he’s ill, or regret all the plans that need to be altered, because he’s been predominantly healthy this winter.
Plus, although far from having completed med school (high school biology not withstanding), after six years of chronic inflammations I seem to be gifted at discerning the exact day his internal infection will have migrated to his unreasonably slender ear canals. This “second sight” precludes the repeat doctor visit that I so resent (“I know I’m just a housewife, but that ear infection is coming, JUST GIVE ME THE DRUGS NOW”). It also precludes the high fever that is often so devastating to my eldest son, frequently elevating his OCD traits to new and unimagined heights, rendering him captive to the indiscernible orchestrations of his mind. I am confident after we do our time in the waiting area that the earliest signs of inflammation will be found by the doctor’s otoscope, and that we will be happily sent on our way to Walgreen’s with an anti-biotic.
As I’ve mentioned before, it doesn’t take much these days to make me happy.
He’s an angel in the waiting room, periodically checking out the other patients while striding back and forth along the hardwood floors as if he owns the place, the former an action he would not have indulged in six months ago. By arriving here five minutes before our appointed time we’ve managed to subvert an entire herd of people I’m certain have the same designated appointment as we do, and I allow myself a brief congratulatory “yay mommy!” as we are called back to the examining rooms in less time than it takes me to shave my legs (unless it’s winter, then all bets are off).
Within minutes our on-call pediatrician makes his debut, and I sigh with relief as I recognize him, as this guy gets that Justin will not be sticking his tongue out willingly any time this century. I also like him because he actually listens to patient histories as reported by tired, cranky mothers, without even a nuance of condescension anywhere in sight. He asks why we’re here, and I tell him I have a hunch Justin’s garden variety cold or allergies has morphed into a full-blown invasion of his ears, and I need him to check them out. I tell him he had tubes inserted in the fall, and his avoidance of illness since then has been remarkable. He smiles, and tells me before he examines my son that he just wants to look through his chart, and opens up a tome of such great width it could be the sequel to War and Peace.
It takes him a minute or two to peruse his brethren’s collection of illegible scrawls, then without lifting his eyes from the chart says “he’s had so many ear infections every year, I’m surprised you didn’t have the surgery much sooner.”
Seriously, I am WAY too tired for “judgy ped”, particularly since said fatigue will make me prone to a rather snappish retort. Since you haven’t given me the scrip for those drugs yet, I’m really hoping this isn’t directed at me. I silently tell myself to summon those Pilates’ breaths, and wait.
To my immense relief, the dreaded “JP” has not reared its ugly head. He simply goes on to say he’s surprised I wasn’t advised to do this sooner, and I respond that I was too. I love Justin’s practice, have kept him there even though the hours have been decimated (it would be so convenient if he would just contract his illnesses between two and four, Tuesdays and Thursdays), because his physician is wonderful. There’s only one primary doctor and one alternate, and they’ve tolerated his hissy-fits over the years with grace, and didn’t even bat an eye when he ripped a swath of wall-paper the size of Texas off their waiting area wall (the nurse said they’d been planning to redecorate anyway).
To be fair to them, each year, when his incidence of ear infections crept up from three or four to an even half-dozen, it was always going to be the “next one” that would prompt the ENT referral, and there never was a closer. The only reason we entertained the idea of implants last year was due to his working on his eighth consecutive infection in under six months, and I was desperate to MAKE IT STOP. I pleaded my case, they did the math, he was referred. End of story.
The truth is though, I think I knew at least a few years before this past fall that he needed this intervention, and I didn’t insist upon it. This is unlike me, as I’m usually “Mademoiselle Argumentative” when it comes to his educational plan, therapies, medications, or his right to engage in leisure activities within the real world. I just didn’t listen to my nagging inner harpy who so often is correct, even if she doesn’t have a medical degree. I won’t be flagellating myself on this (after all, I was fighting just a few other concurrent battles over the years, I wasn’t that much of a slacker). But the truth is, I knew before we turned the corner to this decade that I should have been more aggressive, even with those impressive diplomas eyeing me haughtily from the one surface unblighted by my son’s wall-paper perseverations. I didn’t listen to my gut, and I could have prevented a great deal of angst for my family, and most importantly, a great deal of discomfort for my child.
And after the good doctor checks Justin’s ears and willingly hands me that precious blue slip of paper with its priceless chicken scratch, I remind myself that Oprah is (always) right. Heed that woman’s intuition, and summon that inner warrior for your child, whenever you can.