April 4, 2011

The Pot of Gold

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , at 9:31 am by autismmommytherapist

“Zachy, we don’t stand up in booths at restaurants” I gently admonish my youngest child, reminding myself that this is literally the first time he’s been in such an establishment in two years, since he’s an adherent to the gluten-free casein-free diet. While there are now a number of pizza places in our area that serve their fare without wheat, rice, barley, and oats (I imagine this is mostly due to Celiac’s disease and a recent diet craze by celebrities, not autism), I have yet to find a locale which can meet both of my son’s restrictions. Tonight however we’re fortunate, because the owner of this particular Perkins’s has no issue with my toting Zach’s dinner along with me from home, so we’re set. Both boys, to my delight, are eating well. And after I’ve cleaned up the multiple Picasso-like smears of ketchup enhancing both the design of the table and the glass-etched partition separating us from the other patrons in the restaurant, we’ll be on our way to celebrate St. Patty’s Day at Someone Special Needs You tonight.

A woman’s work is never done.

On our way over to meet my aunt for dinner prior to the big event my eldest son kvetched mightily, his disdain for his younger brother’s presence readily apparent, but about halfway to Perkin’s he finally settled down. I even caught him regarding Zach a few times with a look on his face that said “Can you BELIEVE she’s taking us here?”, and after I explained a hundred thousand times to Zach what our itinerary was for the evening, he got on board with the plans as well. After we pay for our meal and over-tip the nicest waitress EVER (short of shoving a mop and bucket in my “goody bag”, there’s no way I can ever restore this table to its proper cleanliness, and this woman NEVER complains), the boys run eagerly to the car, almost pulling our arms from our sockets in their enthusiasm. We quickly arrive at the church mere minutes later, and I relegate Zach to my aunt as I try to prevent Justin from bowling over some of the younger participants in the program.

Even though he’ll want to leave in twenty minutes, for Justin this moment is horseback riding AND Great Adventure all rolled into one.

Neither of Justin’s buddies are in attendance tonight, but we are fortunate to acquire a substitute, a poised, chatty freshman who I am certain will one day dominate the world (in a good way). Justin takes to her immediately, and she says due to her schedule she can’t commit to coming here every month, but she’ll try harder. I’m just grateful she’s here tonight, as the allure of SSNY for Justin is not the crafts, but the teen-aged girls. While autism may traditionally inhibit social interaction in its hosts, this is clearly one subset of the population for which Justin will consistently overcome his limitations.

His father is so proud.

My youngest son has also lucked into a buddy for the evening, and there is a point where for five consecutive minutes I get to chat with my aunt as my boys decorate their leprechauns, and construct their own personal pots of gold in which to house them. I’m constantly plying Justin with food so he will make it to the grand finale of the night, a hunt in the graveyard for gold nuggets of treasure to fill the green buckets they’re creating to hold their stash. Once again I’m impressed with how much effort Vince Scanelli and his volunteers have taken to throw this event together on a weeknight no less, and I’m still grateful for the flyer about SSNY that Justin’s pre-school teacher sent our way in his backpack four years ago. Generally at this point on a weeknight I’m just trying to remind myself to make Justin’s lunch for school, and this gentleman has been providing an outlet for children with all disabilities to spend time with neurotypical peers on a monthly basis. From the look of delight and concentration on Zach’s face, I think the McCaffertys have one more activity our boys can do together as a family.

Bonus.

Justin finishes his craft quickly, but manages to fill the remaining time until the treasure hunt with multiple trips to the bathroom, so for once I’m not spending the majority of my evening convincing him to stick around. Halfway into the hour Vince summons us all to the front of the church’s great room, distributes leprechaun hats to those who desire to don them (where does this man find the time), and regales us with the plans for the rest of the evening. It seems those naughty little Irish icons have distributed their wealth throughout the adjoining cemetery out back, and if we move quickly we can acquire them for ourselves before the green gremlins return to claim their cache. I look around me at the participants, ranging widely both in age and in the manifestation of their disabilities, and listen to their collective exhale of joy and anticipation. I watch Zach look up at my aunt in wonder as he rejects his hat, then I turn toward my eldest to see how he has reacted to the news of impending carb heaven.

He stands squarely in the center of the fray, his eyes mere inches from the mecca of  DVD movie heaven, smiling and entranced by the old man from Up. My son is completely unaware of his surroundings, could just as easily be in Disney, or at the DMV. For him, at this moment, none of the rest of us even exists.

Even a few years ago, this realization might have ruined the night for me. I would have been so saddened my son was oblivious to the excitement swirling around him I wouldn’t have been able to enjoy the moments of engagement he did have this evening, the connection forged with a girl I hope will be a new friend. I’m not certain I would have been able to move forward in my mind to the event to come, which will involve my two boys breathlessly foraging for their finds, relentless in their acquisition of gold. I don’t know that I could have pulled myself back from the abyss of what appears to me at times such a solitary state for my boy, one in which I’ve often envisioned he must feel so alone.

Except, perhaps sometimes, like right now, he actually doesn’t.

My goals for my boys have never altered over the years, have not been diminished by autism, have simply been reframed. I want what I’ve always wanted for them- health, hope for a safe and industrious future, and happiness. The longer I remain on the “autism tour”, the more I feel these elaborate goals are potentially feasible, will perhaps be attainable while I am still young and facile enough in mind to recognize we’ve achieved them.

And that day, in all its glory, will truly be the pot of gold at the end of the rainbow.

August 6, 2010

Family Outing

Posted in Life's Little Moments tagged , , , , at 6:31 am by autismmommytherapist

The McCafferty clan spent the entire day in public this weekend, no crying, no tantrums (except for when Daddy was told he couldn’t bring his Swiss army knife past security), and no agita. Just five consecutive hours of blissful, calm togetherness.

The Christmas miracle came early this year.

Truth be told, we began having successful family outings about six months ago, when a combination of therapeutic interventions, maturity, and the correct medication culminated in my oldest son’s ability to consistently behave in public. We’ve been going places for years he and I, but our field trips have been limited in scope and time, and generally have excluded his father and brother due to Justin’s penchant for leaving any destination within half an hour. We’ve been working on extending our stays, but now that Zachary’s older it didn’t seem fair to risk cutting his trips short, and depleting two gas tanks seemed an extreme alternative, so we’ve kept our boys’ trips separate for the most part. This Sunday however we got brave, and armed with season passes for Great Adventure that “by God as a family we are going to use”, we decided to give it a go.

For once the stars aligned, and literally everything went smoothly. Everything.

Of course, by this point in the autism wars I am conditioned to expect the worst in just about any situation, so I was mentally prepared for meltdown Armageddon. My heart rate elevated within seconds of entering the gates after I was told the office for activating our season passes was on the opposite end of the park, a route that would take us past almost every ride Justin deems appropriate. Jeff and I briefly debated our options, which included either waiting until later in the day and risking the long lines we’d been warned about, or instead popping a wheelie with Justin’s stroller and whisking him past his coveted rides so we could get the photo portion of our day concluded swiftly. We opted for the latter, and I bent down and whispered in Justin’s ear that he would indeed get to partake in his usual fun eventually, but we had to accomplish this errand first. He regarded me with what I interpreted as minor disdain, but settled back in his souped-up carriage, and calmly let us wheel him past his faves with nary a complaint. We didn’t even have to bribe him.

The four of us waited mere minutes to have our likenesses captured on tiny plastic cards, and Justin dutifully complied with disembarking from his seat and returning post photo shoot, even gracing the camera with the slightest of smiles. Our passes were quickly returned to us, with half of us looking annoyed, and the youngest, palest member of the McCafferty household barely registering his image on his entrance ticket. We swiftly gathered our things, made a brief potty stop, then worked our way back through the park, stopping at every ride that caught our fancy.

The four of us, together, went on every attraction that caters to the four feet and under crowd.

We were an ensemble crew on the teacups. We raced each other on the carousel. We were even able to get Justin to participate in every ride in the Wiggles World pavilion, an area of the park which he has made perfectly clear in the past year he has seriously outgrown. For whatever reasons, ones I’m certain I will never discern, this weekend the Wiggles were once again cool. Through Justin’s acceptance his entire family had the opportunity to plunge to the ocean floor on the yellow submarine, ascend to the heavens in the Wiggles balloons, and condone mommy’s lead foot on the Big Red Cars speedway. The lines were short (and so were the rides), but we went on every one the boys pointed to, some of them twice.

Before I knew it, we’d been there for five consecutive hours, and I’d relaxed for at least four of them. We’d enjoyed ourselves. We’d had an entire day of fun.

We were just like every other family.

Well, okay, not REALLY, but for a few hours, minus the fact my oldest son doesn’t speak, we were. I realized it was the first time we’d been together as a cohesive whole in the three years since my youngest was born where there wasn’t an incident, a struggle, or even just the marital sniping all couples indulge in on family outings. I’d even remembered the camera, so if I didn’t believe it later, I could prove to myself this day had occurred after all.

We eventually made the long trek back from roller coaster mecca to the waiting vehicle I only located by activating our car alarm, and before I employed that lead foot once again I decided to scroll through the wonders of modern technology and reenact our day. I was rewarded with a shot of Justin, eyes wide as he whirled around on the teacups, with Zach grasping his brother’s hand for dear life. There was an image of the boys, side by side, happily scarfing down the contraband carbs we’d snuck into the park to accommodate Zachary’s GF/CF diet. My photo gallery even included a family portrait, slightly askew, of two grinning parents and their progeny staring off in the distance from the top of the ferris wheel, blithely ignoring entreaties to smile and look into the lens. It wasn’t a perfect day. It might never be most peoples’ definition of perfect, ever.

But it worked for us. And that’s all that matters.

June 18, 2010

Back in the Saddle

Posted in My Take on Autism tagged , , , , , at 8:49 am by autismmommytherapist

I fell off of a horse yesterday. Not a proverbial one, nor am I making an oblique reference to a wagon, for those of you so concerned about my frequent mentions of alcohol. No, I took a tumble from a completely stationary animal embedded firmly into the weathered wood at the Point Pleasant Beach carousel. You might be pondering why a forty-three-year-old woman was indeed engaging her equestrian predilections in the first place, and I respond that I was doing so because my youngest son asked me to race him on said carousel, and I am so grateful he can ask me anything at all that I generally try to accommodate his requests. I am certain he will develop into a lovely child.

The ride itself was wonderful, and of course, I let Zachary win. It was the dismount that did me in, my taking for granted that my flip-flops would afford me the same purchase of the stirrups that my sneakers usually did. When the ride began to slow to its inevitable end, as rides always do, I gracefully swung my leg over the saddle, and artlessly ended up on my ass. After I hiked my beach dress down over my neither-toned-nor-tanned-enough thighs and retrieved my errant ticket book from the concerned dad who’d had it flung at his face, I had time for three successive thoughts. Oh goody, I don’t think I broke a body part, either integral or extraneous; at least Zach was still strapped in on his horse, and most importantly, my fall didn’t interrupt his flirtations with the three-year-old girl next to him; and finally, I don’t give a damn if anyone saw my awkward tumble, but why did that dad have to be so cute?

This is not my first brush with death at our local boardwalk. Last season I faced my own mortality with Justin, walking backwards amongst the crowds trying desperately to eek out twelve more consecutive seconds of adult conversation after a chance encounter with one of my dearest friends. This profoundly idiotic choice resulted in a near concussive event as my skull eventually connected with the boardwalk’s prominently placed railroad crossing sign. After uttering two expletives in rapid succession (that’s a good day for me) my son proceeded to yank my t-shirt down to my waist so he could kiss me multiple times to “make it better”, and since I had one hand clamped on Justin’s wrist I had my own Sophie’s Choice to consider:  cover the boobs, or continue to search for blood and assess my chances for intracranial bleeding. I chose the boobs. I’ve watched enough Grey’s Anatomy to know if it’s a subdural hematoma, I’m doomed anyway. Especially if it’s sweeps.

For the longest time my fear of impending mis-steps resulting from bad choices regarding the care, education, or medical approaches we utilized with our oldest son often left me in a paralyzed state. In the early days after Justin’s diagnosis I was often overwhelmed by the plethora of options the Internet held before me. Should his main therapeutic intervention be Applied Behavioral Analysis, or Floortime?  Should I try the GF/CF diet, or not attempt to wean him off of the three food items he currently ingested without my using the football hold on him?  Do we continue to vaccinate him, or hold off on further injections in fear that in the case of this child, the small but vocal minority is correct that immunizations trigger autism?  Is it okay to secure that babysitter for our irascible toddler even if we’re not certain both parties will still be alive upon our return from Applebee’s?

Back then, and for years to come, choices (and sometimes, the lack thereof) ruled my days. I was so sure that if I picked badly for Justin, selected the wrong school for him, was unable to acquire the perfect autism consultant for our home program, or didn’t adhere to the equivalent of the Behavioral Ten Commandments EVERY SINGLE TIME that I would be damning my child to autistic hell. I put a great deal of pressure on myself to get it all right, to leave no stone, speck, or microscopic organism unturned. I attempted motherhood perfection. I was relentless.

Over time, maybe six months into our family’s permanent autism detour, I began to realize my yearning for perfection in the treatment of this child was affecting my marriage, my health, my ability to sleep for more than three consecutive hours at a time, and my relationship with my child. Eventually I figured out that my hopes of achieving a type of treatment nirvana were self-indulgent, a way for me to feel more control of a situation in which I did not, nor do not, have a great modicum of control. The best I could do for Justin was envelop him in hours of quality therapy, immerse him in consistency, and wrap it all up with a vast quantity of love. The best thing I could do for me was not obsess over every decision or choice I made for him. I came to realize that at every crossroads I should listen to my gut, choose, and move on. It took some time, but I finally understood that to be the best mom for Justin, I had to first tend to my tattered soul, and be gentle with myself and my decisions. This was the most important choice I could make both for him, and for myself.

I continue to struggle with what sometimes appears to me as the overwhelming finality of some of my options, but I’ve discovered at least with the second child I’ve made some progress. Perhaps it’s because he’s found his home on the much milder side of the vast autism spectrum, or perhaps it’s because with the return of his much longed-for language he is fully a participant (and quite a bossy one at that) in many of our decision-making ventures. A number of my friends would take care to point out to me that my calm demeanor reflects in large part his less-that-human status of second child, but I think they’re just suffering from first child envy. It’s true. We do get all the good stuff.

I will continue to work on reducing the angst of my choices with Justin, and anticipate I will be fully evolved with it by the time he’s fifty. Of course I’ll be dead by then, but I’m working on overseeing things from beyond the grave, and I figure I have about forty years to bring that dream to fruition. It’s good to have goals.

And for any parent out there new to autism in its many shapes and forms, please take a deep breath, and remember to let it out. Your child needs you whole, and no matter how involved they are with the disorder, they are still whole, still yours, too. In the days and months to come you will be stretched past any limits you once thought you had. Don’t forget to reign in once in a while, set your own limits as to what you can do, and care for yourself also.

Try, as much as you can, to be well.

June 2, 2010

Present Tense

Posted in My Take on Autism tagged , at 9:35 am by autismmommytherapist

Nobody seems to agree on, well, anything in regards to autism, but I feel I can speak for my community when I make this statement: when it comes to this disorder, usually nothing is simple.

Controversies rage in almost every aspect of autism, from the cause to the cure, traditional versus alternative treatments, even whether or not it is a gift, or a curse. This last perspective has remained a bit of a conundrum to me, as despite watching both of my children succumb to its difficulties, I’m still capable of channeling shades of gray and understanding the perspective of very high-functioning individuals residing on the spectrum. I’ve read a few statements penned by extremely bright, articulate individuals who feel that autism has afforded them opportunities that would have been denied to them by possessing a neurotypical brain, who believe that without autism they never would have achieved their unique world view. I can understand that perspective, as well as their fear that a cure would mean the eventual eradication of autism entirely, as the opportunity for tests for Downs Syndrome have precluded most babies with the extra chromosome from being born. I can see that for these individuals, having a choice as to whether or not to bring babies on the spectrum into the world would feel like a rejection of who they are, perhaps an annihilation.

My issue with the gift perspective is this- if you’re mildy affected enough to be writing about autism’s bonuses, you don’t have the type of autism that has afflicted my oldest child. When Justin was diagnosed six years ago it wasn’t the fact that he possessed a label that so horrified me. Although I was a regular education teacher for years I also taught many inclusion classes, and felt very comfortable with children possessing a variety of disabilities, ranging from mild to all-consuming. Frankly, some of those children, and their families, lived far happier and more satisfying lives than some of the “normal” children I had instructed over the years. Justin’s being permanently different from the mainstream was not what bothered me.

What devastated me, what nearly consumed me at the time, was that my child suffered, and there was so little I could do about it. We immersed him in traditional therapies, tried the “autism diet” and supplements, enveloped him in consistency, and love. None of those approaches could quell the diarrhea and constipation his pediatrician and specialists could not dissipate for years. None of the therapies afforded him the ability to communicate with his mouth, rather than his hands, his often angry hands. None of our therapies were ever able to quench his desire to spin, to obsess on a scene in a movie, or to stim on the peculiar sound emitted by one of his favorite perseverative toys. Nothing could eradicate it all, and as a result, he missed out on sampling the most basic joys of his peers, felt frustration from not being able to convey his wishes to those around him, and experienced physical pain as well from years of stomach troubles. For Justin, autism had no “up side”. He truly suffered, and to a much lesser extent, still does today as well.

Perhaps I will feel differently with my second son Zachary, who is mildly autistic. Zachary’s autism presented completely differently than my first child’s, whom I believe exhibited signs as early as six months of age. Zach, with the exception of a slight speech delay, developed normally until twenty months of age, then regressed into a child with a five-word vocabulary who regarded the world with a dull countenance and an absence of joy. He is also the child who we believe responded to the autism diet and ABA therapy so well that inside of a year he was singing Christmas carols better than his exhausted parents, and ordering us around with impunity. I feel Zach will lead an independent life someday, but will always retain certain remnants of the disorder, which for him, may be a positive thing. At two-and-a-half he could name every train, caboose and tender on Thomas the Train’s Island of Sodor, and he recalls the lyrics to songs so well that he might perform better than half the contestants on American Idol did this season. He makes astonishing connections at times, and has a memory that puts a herd of elephants to shame. Seeing as he inherited neither ability from his mother, perhaps autism is the culprit, and I am hopeful he will welcome those gifts in the years to come, and be able to employ them well.

This eventuality remains to be seen however, and as I have learned with autism, and life in general, never to get too comfortable, I’m not counting on it. I’m not sure I will ever be able to regard autism as a gift when it comes to my sons, but I do believe, since it’s invaded my life 24/7, that I need to discern something positive from the experience, and I’m certain other parents living with this disorder need to as well. Besides, I still like presents, and God knows with autism and children in general, we all deserve them, so why deny ourselves?

The main gift I have chosen to give myself, and I wish strongly I could impart it upon every parent of a disabled child I meet, is the ability to relinquish guilt permanently. For months after Justin’s diagnosis I tortured myself as to how autism had come to impose itself upon my son. Was it my husband’s genes?  Was it mine?  Was it the flu shot?  Did I spend too much time lingering in the fish section of Whole Foods talking to my friends on my cell phone?

I scoured the internet for causes for many nights after D Day, and if I could have Googled “Reason for Justin McCafferty’s getting screwed” I gladly would have done so, whatever the result. Part of the agony for me was the not knowing. It seemed so over the top to have this situation inflicted on my family without being able to understand why. I really, really, resented it.

Eventually, I came to understand that what was at the heart of my need to know, my pursuit of “why”, was the fact I had so little control over the outcome of the situation. Sure, we would get all the help Justin needed, and provide him with the best care possible, but intrinsically I knew from my teaching days that ultimately, the arc of Justin’s progress would in large measure be left to his discretion, his desire, and his ability. One of my greatest challenges was accepting I couldn’t “fix it”, as I had fixed so many other things in my life before. I had to accept that spending even one second feeling guilty over whatever contribution I had made to my son’s disorder was actually hurting him, as that was one less second I was focused on eradicating undesirable behaviors, assisting him in finding pleasure in the give and take of discourse, or simply communicating to him how proud I was of his efforts. I wasn’t being a good mother by torturing myself. I would be a good mother by letting it all go.

And I am forced to admit, albeit grudgingly, that I have extrapolated this shedding of guilt to all areas of my life, and that I never would have come to this juncture so early, or perhaps at all, had it not been for autism insinuating its way into my world so completely, and so irrevocably. It has forced me to regard almost every belief I held dear in a different way, turned upside down my preconceptions about children and childhood, what constitutes a good parent, a competent mother. It has relieved me of a burden, the second-guessing of choices I’ve made in the past, and ones I’m certain to make in the future. It has freed me from my own form of worthless perserveration, and enabled me to live more in the present, to focus purely on making my sons’ lives better, and mine more fulfilling as well.

I doubt I’ll ever regard autism as a gift for my children, but it’s permitted me to inhabit a guilt-free zone, and for that I am grateful. I hope, as you’re reading this, I can impart this gift to you as well.