October 31, 2011
My annual “leave the husband and kids behind” trip back to Washington, DC transpired this past week, a ritual I plan never to abandon as long as I continue to draw breath. This tradition consists of three nights and three days of consuming the Indian and Thai food I can’t get in this part of Jersey; the palpable absence of potty training; and seeing old friends who knew me before I was old enough to rent a car. Through the grace of my husband and mother, each fall since we relocated to the Garden State I’ve been granted the temporary reprieve of being someone’s mommy, or someone’s wife. Amidst the backdrop of our splendid nation’s capital I had the pleasure of finishing complete sentences, recalling why I walked into a room, and simply reconnecting with myself.
As always, it was fabulous.
This was probably the first year I pulled out of my driveway without crushing guilt as a companion, and I have to say I quite prefer things this way. It’s not that I haven’t thought I deserved the time away, or had the right to preserve relationships I’d built over the course of the fifteen years I lived in DC. It’s just that in the past, the boys have been so difficult I’d hesitated to leave my working husband with an additional job. I’ve persisted in planning this trip however because I’ve always been of a mind that one of the best things we can do as parents is to take care of our own needs, not just those of our children. For me, that seems to include ethnic food and the chance to sleep past 5:30 AM a few days a year, if my body will permit. I’m a much better mother when I get my annual fix.
And according to my husband, much more pleasant to be around as well.
I’d originally had big plans of trying to cram in everyone I’d ever met during my youth into one seventy-two hour visit, a goal I’ve tried to attain every year, but in the past had been too exhausted from the travails of autism to bring to fruition. This time, with things being what I like to refer to as “as Disneyesque as it gets” chez McCafferty, I’d thought I’d expand upon my usual reunions, get ambitious, and try to visit with several people I’d not seen in years.
In Maryland and Virginia reside several school administrators from my teaching days, individuals I’d hoped to chat with about a project I’m developing for the public schools. There was a lovely girl from high school with whom I’ve developed a friendship on Facebook (which leads me to believe that while Ms. Betty White is correct about, well, almost everything, perhaps the social medium isn’t a TOTAL waste of time). I could have chosen to spend an afternoon with an educator friend, one who’d contracted pneumonia the week before and couldn’t make what I’ve long dubbed my annual “teacher dinner”. But two weeks before I left for the beltway I strolled into my allergist’s office to renew my inhaler scrip, and walked out for an unscheduled emergency visit to my GP with a blood pressure reading of 170/100.
I’ve decided that middle age sucketh.
This wasn’t a complete surprise, as my BP has been slightly elevated for years, an inherited gift from my mother (whom, since she gave me life, I’ve subsequently decided to forgive). I’m fond of saying “everything is cumulative”, and although our little family of four has shed so many of the daily pressures that plagued us for more than half a decade, I can feel that stress still, view it as a permanent resident within the confines of my physique. My heart working overtime is probably the reason I’ve continued to have those pesky, albeit now infrequent, dizzy spells. This is a condition I chalked up to the pinched nerves my neurologist discovered this summer through the miracle of MRI, unsettling events that were radically reduced when I stopped picking up my seventy-five pound child, and began hugging him with our four feet on the floor. I thought I’d been thorough in my medical approach, and figured I’d just have to live with reality, along with forgetting my children’s names and having to pee every five minutes. I didn’t continue to put my health first.
And the consequences could have been terrible.
There may not be many universal truths, but one that is incontrovertible is that I need to be on this earth as long as humanly possible for my boys. My goal remains to make it until Justin is seventy (which is a bit unrealistic as that would make me 106, but I can try), because unlike other offspring who will exchange dependence for independence with partners and spouses, he will always need help. I plan on remaining one of those people as long as I’m able, pushing him always to do for himself, to anticipate and execute his own needs.
And I need to remember to do the same for me.
So this trip, I kicked back and relaxed more than I am generally wont to do, and forced myself to slow down a bit. There was still quality time with dear friends, the kind whom you can interrupt mid-thought with a name from twenty-five years ago and they not only recognize it, but completely comprehend the segueway. I managed to infiltrate Georgetown Cupcake this year after the employees unceremoniously prevented our access to carbohydrate heaven last October (the fact that we arrived one minute past closing and I hailed from New Jersey apparently moved nobody). I even managed to pull off three glorious hours alone navigating the cobblestoned streets from Georgetown to Dupont, a languorous walk in which I managed not to think about children, or autism, or anything remotely important for the better part of an afternoon. I took it easy. I didn’t rush, and purposefully slowed my pace. For once, I simply lived in the moment, and that moment was fine.
And that, my friends, is “good times”.
October 27, 2011
My son takes my hand, clenching and unclenching it tightly as he usually does when he’s excited. We walk together through an exquisitely constructed archway of flowers adorning an equally lovely path, and a witch runs right in front of us, followed closely by a goblin in hot pursuit. They are gone in a flash, and my boy doesn’t even flinch, because he’s dealt with these supernatural beings before, and knows these particular spirits of the netherworld are harmless. The path finally ends, and before us looms a large field sporting a haunted hayride, pumpkins for painting, an inflatable fire truck slide, and hot dogs and popcorn for all.
My boy takes it all in and grins, because he knows it’s that time of year again. It’s the annual SEPTA (Brick Special Education PTA’s) Halloweenfest, and everybody is in for a good time.
This year, my son Justin, an eight-year-old boy with moderate autism, is delighted by the sights and sounds around him, far more eager to participate than he has been in the past. We’ve been coming to this event for years, and there have been times when we haven’t even made it through the first line while he waited for his turn in the bouncy house. I’ve also learned to get there early, and this year we only endure a slight wait for each piece of equipment, Justin standing calmly at my side as he now knows the drill.
In rapid succession he masters the fire truck and a maze I’m not certain his mother could have conquered, and congenially walks with me to the center of all the action. Pumpkin painting is not to his liking, but popcorn does the trick instead. He stands by my side patiently as his social mom actually carries off three consecutive conversations without having to chase him, and as I glance down at my sweet boy quietly munching kernels with gusto, I feel a wave of gratitude sweep over me.
All in all, we stay over forty minutes, compared to our not-quite-ten of last year. It is a banner day for us both.
I’ve been attending meetings and supporting the Brick SEPTA for the last four years, and as such I’ve been privy to watching the organization grow and evolve. SEPTA was originally formed in 2004 to address the often unique needs of the special education population. It is comprised of parents, teachers, and members of the community who have come together to provide a forum of support for the children of this school district, and for each other as well. It meets nine times a year, and has created an atmosphere of true collaboration which has led to some fabulous events for children (see below). It has also provided a number of inspiring speakers, all of whom have dispensed incredibly valuable information to our group.
Plus, they always have donuts. It’s a big selling point for me.
This year in particular, president Mary Tara Wurmser, as well as officers Dina Crepaldi, Vinnie Muti, Janet Bixenman, Nicole Barresi, and Sherry Doyle, have combined forces once again to organize some creative fundraisers, wonderful events, and interesting speakers. Two of my favorites (I can’t pick, I love hamburgers and bargains in equal measure) will be held in the near future in Brick at Cheeburger Cheeburger on October 27th, and Five Below from October 27-31.
They are also working with the BMAC (Brick Municipal Alliance Committee) on a holiday event in December that’s a favorite for our kids (and involves a certain “jolly someone”), and a family bowling night solely through SEPTA as well. They will be highlighting speakers on such pertinent topics as transitioning to adult life and learning differently with ADHD, and offering a technology and social skills night as well (due to my technological illiteracy, the former subject will be of great interest to me).
In other words, if you join Brick SEPTA, at least once a month you can be guaranteed an opportunity to learn something, speak with other adults without interruption(!), and have the chance to consume a carb. It’s a win-win for all.
You can check on the Brick SEPTA website for all future events and meetings, with the next gathering taking place on Monday, November 14th, at the Educational Enrichment Center at 7:00 PM. Please know that all are welcome to attend, and I can guarantee the word welcome.
Just make sure you save room for that donut.
October 23, 2011
It seems we’ve come to a place in our society where moms require labels to distinguish what kind of parenting we practice. Several years ago I read an article describing how Jenny McCarthy aptly coined the phrase “warrior moms”, a term dedicated to those of us fiercely advocating and fighting for our children with autism. This past year in Time Magazine the zeitgeist shifted to “tiger moms”, an appellation I grasp intellectually, but continue to reject solely on my belief that childhood should include choices, and at times actually be fun. Then last night, as I briefly skimmed through the daily Autism Speaks blog, I chanced upon a reference to a New York Times opinion piece called “Notes from a Dragon Mom”. Without reading the blurb I rolled my eyes and clicked on the link, ready to be regaled with yet another story of a superhuman mother which would surely leave me feeling vaguely guilty for all the things, despite my efforts, I somehow manage not to accomplish for my progeny.
Ten minutes and half a box of Kleenex later, I sent a silent plea to the universe to forgive me for that eye roll.
The piece, by author Emily Napp, describes in exquisite, precise prose how her eighteen-month-old son Ronan, a beautiful little boy with red hair kissed by fire, will not live to see his third birthday. I won’t give you the details here, because Ms. Napp does so brilliantly, with an elegant grace I cannot and should not attempt to reprise. I promise you however, this article is worth your time, and will perhaps alter your perspective on parenting irrevocably.
I know it did for me.
For years after both of my boys were deemed autistic, I was mostly immersed in the physicality of their diagnoses. My husband and I were completely caught up in dealing with sleepless nights, relentless rounds of diarrhea, eating aversions, and with my eldest, the feint and par of aggression. There wasn’t much time to consider the future, as the two of us at times were literally simply trying to make it through the hour. Quite frankly there was a safety to living in the moment, no matter how terrible it was. Having been a veteran educator myself I’d had access to several autistic students over the years, and had been privileged to know and follow their families over time. I had an extremely clear big picture view of what might transpire for my boys down the road, and the prospects were terrifying. I simply shelved those thoughts for the years immediately following what I like to call their “D Days”, and forced myself to focus on the now.
I believe making that shift saved my sanity.
There were times however, particularly during Justin’s pre-school years, that as our daily struggles lessoned, the weight of that possible future would insidiously slip its way back into my head, at times leaving me semi-paralyzed with fear. I realized ironically that as Justin’s challenging behavior lessoned, I would have to ramp up my own self-discipline, try to conquer my own fears, and stop living in my head. I’ve mentioned before in my blog that one of the most helpful tools I used to do so was Susan Senator’s book Making Peace with Autism. Her writing, despite our child’s moderate autism, afforded me both a blueprint for one day achieving a happy family, as well as a second important mental shift.
I clearly remember one fall morning in Barnes and Noble, snatching up this book from amongst a myriad of tomes that outlined the full recovery of the author’s child, and finding immediate comfort from the words within the cover. The solace came not from discovering a family who made every decision regarding their child’s care with consummate perfection. It came from reading about a family who learned to self-correct their errors, who made enough of the right choices despite their son’s severe autism to forge a path which would ultimately make possible what I consider the perfect endgame- a safe place to live, a social outlet, a job, and a happy life.
This remains my intended endgame for Justin as well.
Life continues to improve in our home, with my eldest making great strides in reading, communicating his needs, and finally being able to summon that peaceful child I knew existed, and worked so diligently to unearth, during all the dark years. Despite my second’s son’s identical diagnosis, Zachary’s life trajectory remains quite different than Justin’s, most likely including the more traditional fare of relationships, college, career, and independent living. Over time I’ve been able to reconcile the fact that Justin won’t have these options, mostly because he’s achieved the most important goal I’ve always had for both of my kids.
Both Justin and Zach love their lives.
As we’ve reached this point together as a family I’ve realized I won’t ever completely be at peace with the paths autism has altered for us, but the truth is I am completely at peace with that realization. There is one fear however that has lingered for me, the one that requires a serious “aha” moment, or one last emotional transition. I have yet to figure out how to deal with those decades I won’t be around to protect my boy, although if it were possible from beyond the grave, I surely would. Part of my problem is projection, or the very real fear of all that can go wrong when I’m gone.
Every year since Justin’s diagnosis I’ve come across a heartbreaking story of an adult with autism’s neglect, injury, or untimely death. These stories simply exacerbate my deepest fears, heighten the atmosphere of “what happened now”, in which my family dwelled for so long. The possibility of someone hurting the someday adult who will always remain my baby clouded the future, prevented me from seeing an alternative route. Yet the truth is, Justin may live safely for the forty years he’ll spend on earth without me. He may in fact acquire that job that suits him perfectly, enjoy authentic social opportunities, truly revel in his life. There’s every chance he may be just fine. The reality is, he’s lucky to have a future.
And last night, in devastating detail, Ms. Napp reminded me of that simple truth.
I admit, I feel somewhat guilty gleaning clarity from this piece, seeing how this author must surely dwell, despite the sweetness of living in the now, within the confines of constant, unremitting pain. Her words certainly have not completely eradicated my deepest worries concerning Justin’s existence post-parent, but they’ve given me a different way of contemplating the arc of his life. For that gift, I am eternally grateful.
I am confident I will never have the honor of meeting Ms. Napp to physically thank her for sharing her story. The most I can do is share the piece here. As the author states near the conclusion of the article, the truth for all of us raising the next generation is that “none of it is forever”. I thank Ms. Napp for altering my perspective. And I know, as I hug my boys who have already lived longer than her son probably ever will, I won’t forget this truth any time soon.
October 21, 2011
This week’s Gratitude Attitude goes out to my Aunt Candee and Uncle Ken (yes, they’re getting a lot of “air time” these days), for a fabulous day on the farm. Zachary declared he would locate the “biggest pumpkin so the whole world could carve it” (which smacks of “Hands Across a Pumpkin” to me). Justin was so enthralled with the experience that upon our return, he insisted my husband remove both gourds from the trunk before he would even enter the house. Not only was there pumpkin picking and a hayride, but the day culminated in watching my youngest navigate a real tractor on his own, a flash-forward to his teen-age years. It appears we’ll be in a bit of trouble…
Thanks again to Candee and Ken, and to my mom and Kate for taking part in our wonderful day!
October 19, 2011
I’m closing in on my second year of writing this blog now (and it seems like just yesterday I whined to my husband I’d never have enough to say on a weekly basis), and I’ve noticed the subjects of my posts are becoming cyclical. I just finished writing about what I like to call our family’s “Second Consecutive Fabulous Summer”, and pretty soon I’ll present to you my pictorial opus on the five thousand Halloween activities I require my children to attend. There have been some huge leaps of progress in the past year with both boys (and perhaps with their mommy too), coupled with seemingly insignificant baby steps that most human beings would miss. Since I am bound and determined to revel in what I like to call the “minutiae of improvement” EVERY SINGLE TIME it occurs, I’m happy to say I recognized this latest accomplishment of my eldest son, and would like to share it with all of you here.
And in true Halloween spirit, it has to do with blood.
One of the first posts I wrote a year-and-a-half ago was called “Angel for an Hour”, a missive about the trials and tribulations of the annual blood draw required of Justin so that he can remain safely on his medications, drugs that have made such a great difference in his life and in ours. Traditionally, the experience has been about as fun as having a root canal conducted at the DMV on the last day of the month, while simultaneously surviving a bikini wax gone awry.
Justin has been enduring these intrusions since he was a toddler, and despite upping the reward ante annually and the addition of a numbing cream on his arm (the one that literally saved my ass during the fertility wars), he has detested this event each and every time. For him, the experience has not just been about an aversion to pain- it’s also a sensory debacle. Getting his skin pierced and a needle inserted intravenously is a close cousin to his aversion to wearing hats, his disgust with family members wearing hats, any labels on his clothes, or the damn boardwalk wristbands it took two seasons of demand and reward to get him to tolerate.
Justin is not a boy who enjoys “extras”.
So it was with familiar trepidation that I booked our appointment for the earliest possible time on a Saturday morning, which is not the slightest bit inconvenient since the child gives roosters a run for their money. Finally the day of the draw dawned, and as we pulled into the empty parking lot armed with every conceivable toy that my SUV could handle, I noticed our first small step in the progress wars. There was no backseat protest, no utter indignation at our destination point. No low-grade (or who are we kidding, outright caterwauling) accompanied either the sultry sounds of Stevie Nicks or our car into those narrow parallel lines. I looked into the rearview mirror, and watched my son rocking back and forth with glee, clearly familiar with our destination, offering his tacit approval.
The kid was even smiling.
We made it through the waiting portion of the appointment with ease, my son casually perched on the edge of a chair until his name was called, walking slightly in front of me to an empty row of cubicles. I prepared myself for extraordinary multi-tasking, which traditionally has involved corralling my son while attempting to respond semi-intelligently to the Lab Corp representative’s questions, but I needn’t have worried. My boy just sat in the seat next to mine, whipped out his DVD and the vast array of choices I’d packed to placate him, and bided his time until I was done. This year, I didn’t have to try to hold his seventy-pound frame on my lap, or run after him to prevent his exploration of medical waste. He simply waited for ten entire minutes with ease.
I’ll say it again, in case you missed that last sentence. My boy waited for ten minutes with ease.
By this point I was pretty much ecstatic with our Lab Corp experience, sadly almost as giddy as when I got on that plane to Mexico this spring (this is what my life has come to), but I’ve learned not to get cocky in these situations. We still had the devilish draw to conquer, and were by no means out of the woods yet. As the technician finished recording our information I turned to Justin and told him we were done, and he simply stood, smiled at me as his favorite scene from Bolt regaled us for the thousandth time, and walked next to me without protest down that long corridor to bloodletting.
It’s October. I’m indulging in the drama.
We park ourselves in familiar chairs as I inform the technician that my son is eight and autistic, and I watch her eye him carefully, then turn back to me and say, “no problem”. I tell him to go behind the curtain and he complies, DVD player and glorious smile in tow. He slides right back on the chair, even makes an attempt to push up his sleeves by himself. I ask him to take off his coat instead and he does, revealing a t-shirt worn for easy access and two band-aids securely located in the crook of his arms, still intact with their magic cream.
I am stunned, because along with hats, glasses, and on occasion clothing of any kind, my son has rejected those plastic strips vehemently since toddlerhood, even the good ones with his favorite characters represented. Justin glances down as I slowly remove them and wipe off excess white, then returns to his player, far more interested in how a dog is going to save the world after all. Inwardly, I smile.
Hell. Today we’ve conquered waiting AND needles. The band-aids are almost over-kill.
The technician is extremely competent and kind, the latter a coveted and not necessarily frequent bonus, and within two minutes our mission is completed. During his “piercing” there is not one moment of protest, not a tear, no fuss. He in fact barely notices what’s occurring, seems slightly surprised when I motion him off the chair. In a week or two I’ll find out about the state of his thyroid, his triglycerides, and his overall health. I’m confident we’ll have positive results, and I’ll put this entire experience out of my mind. One of life’s little myriad annoyances will occur and I’ll momentarily forget this compilation of events, these small steps to progress that mean everything to me, to my boys, to my family.
But right now, as I escort my son back down the hallway at this early morning hour I’m just so proud of him, and all I can do is smile.
October 14, 2011
Yes, it’s time for that semi-annual review of Parenthood again. NBC is shaking in their shoes.
I’d like to state for the record that it’s pretty much a miracle I’ve stayed with this show, and it has nothing to do with its quality, or its accuracy in representing the trials and successes of a family raising a child on the autism spectrum. Frankly, I think the writers, actors, and director are doing a phenomenal job, and it’s only a miracle I continue to watch it because I am such a wimp when it comes to television with autism as one of the primary subjects. Honestly, it’s just that at a certain point in my day I prefer to put a moratorium on “all things autism” if possible, specifically while enjoying my approximately eighty-seven minutes of downtime before slumber comes to claim me. Hell, it took me a week to watch Claire Danes portray Temple Grandin, and she was wonderful. I never saw Autism the Musical, which I know is my loss. I only watch A Night of Too Many Stars every year because we merit the comedic A-listers now.
At times I am a bad, bad, autism mommy.
In my defense, part of my lack of desire in viewing programs about autism right before bedtime is that they get my brain going in a thousand different directions, which for me is generally not conducive to sleep. Fortunately, Parenthood has never robbed me of slumber, and has only stimulated my mind in positive ways. It has in fact been the catalyst for several conversations about autism with acquaintances, all of which I believe have been informative in some fashion for everyone involved.
I think Parenthood has served as that catalyst once again with one of their recent episodes, where Max, (played by actor Max Burkholder) is placed in the same private school as his cousins, one with a predominantly neurotypical student body. His parents, Christina (Monica Potter) and Adam (yummy Peter Krause), wanted their son to be educated in an environment where he would be more academically challenged, and made the decision to transfer him from a school specifically designed to serve the autism population. It was a daunting decision for them, and remains a profoundly tough choice for many parents outside the world of television. You can see the weight of it clearly on Christina’s face the day she and Adam drop Max off for the first time.
In other words, his mother was scared to death.
I have to admit, the Parenthood crew did such a great job portraying Max’s subsequent immersion in “neurotypical world” that it was gut-wrenching to watch, which means they got it right. In particular, there was a scene in the classroom where Max repeatedly blurts out answers and chastises his neighbor, all while his classmates are simultaneously rolling their eyes and regarding him with utter contempt. Watching Max meet rejection at lunchtime when employing all the social tools he’s been instructed to use (offer to shake hands, look people in the eyes, and smile), was also upsetting. What was more upsetting however was seeing his utter frustration at the children’s reactions, when technically he knows he’s used all the right social cues. Only the most heartless of viewers would not be moved as he makes his way to another table, and sits down alone. I admit, I felt palpable relief when in a later scene his cousin, with friends in tow, seeks him out for companionship and advice.
But the scene that really got me was the one with Christina and the teacher.
It’s always interesting for me to view scenes such as this, because I taught for a dozen years and I’m a parent of two special-needs children, so I’ve made myself comfortable on both sides of the “table”. I could literally feel Christina’s frustration that she’d had absolutely no reports on Max’s first week of school, despite multiple, and increasingly desperate, emails sent to his teacher. Truly, I wanted to give her a hug.
At the same time, I remembered how even with the best-laid plans, the first week of school can often resemble a circus, and that’s on a good day. Sometimes it can take a week or longer to take stock of a child, see his strengths and weaknesses, get a sense of how he’ll interact with his peers. Max’s teacher seems competent, and I believe she was doing just that, trying to get to know him before contacting his parents. I also believe she should have responded to at least one of those emails. Everyone has enough time for “he’s doing okay, we’ll talk”.
I anticipate I’ll be mirroring Christina’s experiences with my youngest someday, hoping he’ll get a handle on his sometime-impulsivity, keeping fingers crossed and double-crossed he’ll continue to make friends easily as he seems able to do now. Zach has a long road ahead of him, and it’s lovely to see his potential future journey described so well on the small screen. Parenthood is doing a stellar job in raising autism awareness, which will hopefully continue to spill over to educators, neighbors, and that person at the watercooler who has no connection to autism (if he or she still exists). I’m hoping that this awareness, and ultimately its preferred bi-product, compassion, will extend itself to my little one some day.
And in the meantime, Parenthood, I remain hooked.
October 11, 2011
Justin opens his mouth in a wordless “o” of half-terror, half-excitement, then plunges a body length toward the boardwalk, as usual enraptured by his favorite ride. I smile and enact my “usual”, which is to capture that moment of abject fright coupled with fun on film, because he’ll enjoy it later when I play these moments back for him on camera. The ride has just begun, so I allow myself the luxury of relaxing just a bit, knowing he’ll be engaged for several minutes, as the amusements at this particular boardwalk are actually worth the wait.
I take a step backwards and feel my sneaker crunch what can only be someone else’s toes, and I quickly turn to offer my apologies. Thankfully, my victim is also wearing sneakers rather than more traditional summer fare, and she simply smiles and says “Don’t worry about it.” I see her hesitate for a second which intrigues me, so I keep my torso turned in her direction, and she follows up with a second question. “Is that your boy on the end?” she asks. I say yes, and she responds with “mine’s on the other end”. I turn back to where my son is being flung around like a jack-hammer, and see a little boy with Down’s Syndrome four seats down from Justin, clearly as immersed in the excitement as my boy.
I consider anyone with a child who’s differently-abled to be part of my “tribe”, so I take a step back and strike up a conversation with her. I tell her her son is beautiful, and she kindly returns the compliment. With only a minute or two left in the ride we conduct a typical abbreviated dialogue- diagnosis, residence, how our school districts are providing for our kids, and sibling status. It turns out she has an older daughter who adores her son and is a big helper, and I share with her that I have a younger son who is also on the autism spectrum, but mildly so.
She looks at me, this woman with her own Herculean challenges, and says quietly, “Two? Wow. I have my hands full with just one. I don’t know how you do it”. I reply that wine and getting out of the house once in a while are my biggest helpers, and she laughs as we both watch the blurred row of seats begin its final descent. Justin can lift himself off now independently, so I say good-bye to my newfound friend, wish her luck, and grab my son’s hand before he’s en route to his next thrill-filled destination. It appears our subsequent adventure will be the tilt-o-whirl, which is wonderful for Justin, and not so good for his mommy. I am already regretting having eaten prior to coming here.
We successfully survive what I’ve lovingly come to call “the twirling cups of queasiness”, and Justin lets me know that he’s done for the day by yanking on my hand and striking out in the direction of his waiting stroller. He’s certain he’ll be the imminent recipient of a salty pretzel within minutes, so his grip is strong, and relentless. Within seconds we’re back at our staging area, the carousel, and he is soon sitting calmly in his own personal ride. We acquire our carbohydrates, his doughy, twisted bread and my staple of soft-serve, and then continue with our tradition, which includes a stroll down to the end of the boardwalk and back.
I love these walks, because along with rides in the car they seem to be one of the few moments in my life where I get time to truly process anything. I let my mind wander back to my conversation with my “tribe-member”, and her heart-felt query as to how I make it through the day. My comment involving the merits of alcohol and frequent bouts of “Mommy-time” was somewhat glib, but also true, particularly the latter remedy. We all need to take care of ourselves so we can take care of our kids, and for me, that includes time alone, even if it’s just running errands. Some of my best ideas have been born from those moments of sanity, where nobody is stretching out my shirt-sleeve with their wants. I admit, to me, it’s precious.
I also admit there are other reasons why I’m usually able to do more than just get through the day, although I’m grateful for that ability too. If I’d had more time, I’d have told this woman that my eldest son’s bravery when he attempts to talk continues to take my breath away. I’d explain to her that my youngest son’s compassion for his sibling’s struggles at communication makes my heart overflow with pride. I’d share with her that my sons’ collective courage in all of their endeavors is a tremendous inspiration to me, that their spirit makes me strive to do better for them, to parent them to the best of my capacity. I’d regale her with all of these examples, and they’d be true. There’s one other important reason I might leave out however, because you really need a visual for it, and it’s something Justin won’t produce on command.
I call it, lovingly, the thin red line.
The thin red line is his special smile, the one he saves for particularly spectacular days, the ones that exceed even his exceedingly high expectations. Its appearance is rare, and therefore even more coveted. It is usually preceded by a mighty hug and kiss of thanks from my boy, includes perfect eye contact, and looks like this:
Those perfectly pursed lips signify a blessed absence of angst, a true sign that fun is interwoven indelibly throughout his days. That look on his face indicates that despite some limitations, he is thoroughly enjoying his childhood. It means that all those years we struggled, both independently and together, have ultimately resolved themselves into his predominantly peaceful, and happy, existence.
It is a smile of utter satisfaction with his life.
A slight smile graces my own lips as I ponder these truths, and for the millionth time, I thank the universe we’ve come to this point. I am well aware there are other parents who have worked just as hard as me and my husband, parents who have not been rewarded with similar results. My boys, and perhaps this boy in particular, continually make me want to do more for them, and do more for others as well. Justin’s contentment, that emotion we’ve worked so hard to elicit, will remain that catalyst that does far more than get me out of bed in the morning. It will be a continual reminder of how fortunate this family truly has become.
Lucky, in fact, to be graced with the thin red line.
October 5, 2011
In a beautiful ceremony marked by happy tears from both sides of the aisle, my aunt, my mom’s little sister, married her fiancé this past weekend. They’ve been together for many years, and are about as perfect a fit as one couple can find on this planet. There’s the added bonus that they’ve known each other since childhood, even took flying lessons together as kids. Finally, in case you weren’t certain about this union, their parents at one time were so close they considered each other family, even went so far as to have a sibling on either side unite in matrimony. Before my grandfather passed away a few years ago, my mother has said he pulled her aside, confirmed that the lovebirds were in fact dating, and asked his eldest daughter if he thought they’d eventually marry. She answered she thought they would, and remembers my grandpa’s satisfied smile at her response.
If by chance there is a heaven, he was whooping it up on Saturday night.
By any standards, my aunt’s a pretty remarkable person. She was a single mom when my cousin was still a pre-schooler, and she put most of her life on hold to raise him. Somehow she managed to be a fantastic mother while continuing to hold down a full-time job as a teacher, sometimes taking on part-time work just to help make ends meet. She always made time for her extended family as well, including the monumental job of taking care of her parents in their last years, one that she predominantly shared with my mother. Her other claim to fame is her formidable artistry in craftmaking, which my other aunt and I have tried at times to emulate, much to our downfall. Somewhere in a landfill, or hopefully a recycling center far, far, away, are the remnants of a New Year’s Eve creation we attempted a decade ago. This monstrosity included those annoying noise-makers that force you to spit on people, as well as large amounts of toilet paper rolls, a combination which resulted in a concoction so offensive it was blasphemy to call it “craft”.
Aunt Donna, you know what I’m talking about.
I’m writing about my aunt today in part because the wedding was an extremely important event in my family (not to mention I also got to dance with my husband, eat cake, and stay up past ten), and in part because I want to thank her, and I don’t think I’ve ever shared this particular reason for my gratitude out loud to her before. The catalyst for this appreciation is inspired in part by the fact that seven years ago this fall, the first of my two children was diagnosed as residing on the autism spectrum (I’ll share with you that the second time around was no picnic either), and as usual, my small but close family offered their help as best they could, with my aunt front and center in her support.
This may surprise some of you, but at that point in time it was difficult for me to articulate all of my thoughts about Justin’s “label”. I’d been an educator for a dozen years by the time I gave birth, and that experience turned out to be both a blessing and a curse when me and my husband were informed as to what was causing Justin’s atypical development. The good part of this experience was, since I’d taught students on the spectrum before and knew some of their families well, I immediately got the “big picture” of the long-term ramifications on all of our lives.
The bad part, due to my background, was that I immediately comprehended the long-term ramifications on all of our lives.
There really was no living just in the moment for me, and to this day, that aspect of autism remains my greatest challenge. I didn’t know how to convey to people that when my son was spinning out of control in the mall, I was simultaneously conjuring up a similar scenario when he might be duplicating this behavior at thirty-seven, and potentially still in my care. The immediate present was daunting enough for me. The weight of all the future decades was almost impossible to bear.
Without having to explain this, even years ago before autism awareness had truly exploded, my aunt just “got it”.
I don’t know if she’ll remember this, but I’ll share this anecdote with you, and with her, today. On one of my visits to Jersey from Washington many years ago, I said to my aunt in a passing conversation that the hardest part for me was this was forever, that Justin would be without my care one day, and there was nothing I could do to change that. I should explain to you that I am descended from extremely stubborn stock on both sides of my family tree, with my maternal lineage being excessively obstinate at times when it comes to acquiring what we want. It is very difficult for us to admit defeat. In this instance, and at this time, for me this knowledge was excruciating. When I finished speaking she just hugged me and whispered “I know”, and that was that. I remember feeling relieved, because frankly, there were people in my life in the early days of “autismland” who just didn’t “get it”.
Those few individuals who immediately comprehended my family’s potential lifetime arc were simply beyond solace for me.
My aunt’s wedding day is over now, but I know that for these two lovebirds, the celebration has truly just begun. Since it’s a Tuesday morning as I’m writing this, I’m just going to raise a symbolic glass to both of them in the form of my CVS water bottle as I wish you two well. To Candee and Ken, I wish you only the best of life, love, and happiness. Knowing you both as I do, I am certain you’ll settle for nothing less.
And for every person out there supporting our autism families who just “gets it”, here’s a toast for you too.
October 4, 2011
This week’s Gratitude Attitude goes out to my aunt and uncle for hosting such a beautiful wedding this past weekend, and to Jen and Jeremy, for holding down the fort so Jeff and I could attend. Congratulations Candee and Ken!