July 1, 2012
Put a Fork In It
It was just a utensil, lying innocuously next to my eldest son’s plate, generally ignored and unwanted. It usually acts as the forlorn mate to the small fork my youngest has used with gusto for about a year now, the stainless steel that replaced the tiny Transformer prongs Zach was loathe to abandon. My husband and I have spent years, (seems like longer,) attempting to get Justin to use it independently. To date, this particular tool has only been utilized when we’ve conducted the ABA dance of work and reward, or in this case, “use your fork Justin, and you get something better from Mommy’s plate.”
Clearly, it’s not tragic if he doesn’t use it regularly. Frankly I’m just grateful that he eats at all, as we’ve had that issue in the not-too-distant past as well. It’s a nicety, like blowing his nose into a tissue and not his sleeve (we’ve mostly conquered that one, thank goodness), but it’s one I’d like him to acquire, since I won’t always be there to cajole him into it. I’d pretty much given up on him using it without a prompt, although I’ve not let go of him incorporating it into his mealtime manners.
There are times however when phones ring, or five-year-old little brothers are particularly demanding, and I just can’t sit with him to insist. Since I was about to depart for an evening of fun (!), tonight was one of those evenings where my head was far more oriented toward charging iPads and signing daily notes than what was transpiring over the kids’ jungle-themed plates. Just as I was washing up perhaps the twenty-fifth dish of the meal (perhaps a slight exaggeration) my husband grasped my arm and pulled me behind the table and Justin, then stage-whispered, “Look!”.
Since I still had at least another fifty things to clean before my exit I gave him a look that said “this better be good”, swung around, and got up on tip-toe to see what miracle had been unveiled chez McCafferty. And miracle it was, as I witnessed my son wielding a fork with diligence and accuracy as he twirled his spaghetti somewhat successfully on a grown-up fork, something he could only have seen me or Zach do on pasta night.
Not only was he using a utensil, he was imitating his sibling. I immediately made a dash for my camera.
Quite often with even a two-foot space between me and my digital, I’m too late to the party. My boy pushes his plate away before I can even take my shot, and begins making his way toward the sink. Jeff informs me he lifted that three-pronged staple to his mouth at least a half-dozen times before abandoning the meal, and he did it without a single prompt, nudge, or nag. We haven’t witnessed a miracle. He isn’t speaking in full sentences, eager to join baseball games with the neighborhood boys, or abandoning the light-up/musical/perseverative toys he’s adored since infancy. This is nothing of that magnitude.
No, it’s just a slight alteration in a routine, one that might not be repeated. But it’s one more tiny step toward some state of independence that I always envision for my son. Quite recently it follows initiating conversation on his iPad, and allowing his sibling’s monster-scaring work-of-art to remain gracing the walls of his room. This minor leap of progress is preceded by my boy recently dressing himself with ease, and gently resting his hand on the top of his brother’s head during story-time. Tiny moments, so easily missed if you’re not looking for them.
Of course, I always am, because after so many years of struggle, they mean everything.
January 31, 2012
POAC Gala 2012, a Call for Contributions
(Gary Weitzen, Executive Director)
It’s a brisk, wintry Saturday evening. Feathers and fedoras abound for the “gangster ball” theme, drinks are flowing, and the driving beat of good tunes makes it impossible not to claim space on the dance floor. No, this is not a scene from Boardwalk Empire. It’s a sneak peak at the POAC (Parents of Autistic Children) Gala, which is celebrated annually at the Eagle Ridge Golf Club, and will take place this February 25th at 6:00 PM.
I will not being wearing a flapper dress. They are not that becoming when you’re short.
In a few weeks several hundred people will soon gather to support POAC, as they endeavor to raise money to support the multitude of programs they continually offer to those within the autistic community. These programs range from providing educational supports to parents, teachers, and school personnel, as well as offering recreational activities to children with autism and their siblings. POAC receives no state or federal funds, and its existence relies entirely upon private donations.
Most of these programs remain free to anyone who works with or loves a child with autism.
I can speak from personal experience about what POAC has meant to me, and to many families in the area. When we relocated back to New Jersey six years ago, our eldest child had only had his autism diagnosis for about a year. While living in the Washington, DC area I had struggled to find activities to do with my son. I also struggled to find free educational opportunities with which to enhance his in-home ABA program, the methodology many people use to instruct autistic children.
(Simone Tellini, Training Coordinator)
As soon as I found out about POAC I realized we immediately had access to a wonderful support group, a variety of free educational workshops, and recreational opportunities in an atmosphere that was always welcoming to my child. POAC gave me and my son an outlet on weekends, and through one of their fundraisers a few years ago at Rein Dancer Therapeutic Riding Center, they were instrumental in showing me my eldest’s love for all things equine as well.
Most importantly, POAC gave us a second family.
The price of a ticket to attend the gala is $150, but there are other ways to contribute as well. Each year at the Gala a silent auction is held, and POAC is in need of donations for this year’s fundraiser. The Gala committee also holds a gift auction and raffle as well, and POAC would greatly appreciate any contributions of business goods or services. Finally, another way to contribute would be to place an ad in the Journal that is distributed to all guests the night of the event.
Any contribution you or your company make would benefit children with autism and their families tremendously.
If you are interested in participating, donations can be brought to the POAC office, or will be picked up for you. Please contact POAC at:
1999 Route 88
Brick, NJ 08724
(732) 785-1099
Thank you so much!
January 17, 2012
Respite Repealed
“We’ll make it” I tell myself, even though Justin is thoroughly kvetching and we haven’t even concluded one entire game of bowling. My eldest son has become slightly more agitated as the afternoon has worn on, but thankfully remains mostly compliant. He dutifully takes his ball to the special ramp designed to help him aim, and afterwards embraces me with one of his trademark bear hugs as he waits for the machine to reset his pins.
We’re about to commence the tenth and final frame as he fingers release his round captive, and without warning, the board that whisks the pins away slams down, preventing his ball from concluding its course. Given his post-illness decline in behavior over the past few weeks I expect anger, or at least frustration, but he seems relieved. He knows he can expect a trip to the snack machine now, and as we make our way back to our assigned swivel seats and my wallet, I admit I am relieved too. We seem to be in the home stretch, another outing successfully conducted despite his recent regression.
Then, he sees the french fries.
We’re back in the car, my heart pounding, Justin sobbing relentlessly, my coat askew. I manage to snap the last buckle on his vest restraints as he tries to pinch me again. I thwart his efforts, and as usual, the anger in his eyes recedes. He grabs a hunk of hair on both sides of my head, and drags me down for his signature “sorry” kiss.
Then, I’m sobbing too.
I wipe the tears from his cheek, hand him a juice box, and my boy’s tears subside. After firmly closing his door I open mine, and heave his bag and my purse onto the front passenger seat, because I literally don’t have the energy to walk around to the other side of the car. I allow myself to recall what just happened, to play it out in my mind so I can relinquish this episode to the past.
It’s the smell of fried potatoes that calls his attention, because I’ve maneuvered my body so it blocks his view of her plate, but to no avail. The woman at the table next to us has ordered this carb concoction, and its odor wafts over to us. Justin sees it, and Justin wants it. Not his own plate. Her plate. And he wants it now.
Despite his protestations, I manage to usher his four foot three frame, the length of which now measures up to my collar bones, back to our table. He is fighting me the entire way, wants out of his seat three, four, five, half a dozen times. I switch his shoes, throw on his coat and mine, and somehow grab all of our bags with one hand while holding onto his jacket with the other. We make several aborted attempts to exit the alley. The look in his eye is clear, focused, and devoid of what I know as the essence of my son. He wants that woman’s food..
He is relentless.
Somehow with me practically dragging him we make it out, past the stares of the manager, the families enjoying their time together, the elderly bowlers whom I know are regulars. A few have looks of disgust on their faces. After eight years I’m usually immune to the glares, particularly as they fortunately do not occur often. But today, I want all of the patrons to disappear. I want to disappear.
It crosses my mind that someone might even question my own behavior with my son.
I slide into the driver’s seat, wishing I retained the same measure of control over my child as I soon will with my car. I grab a wad of napkins left over from some local fast-food restaurant and wipe my own face, take a deep breath, and let the “replay” leave my conscious thoughts. There’s still a good six hours left in the day. There may be more skirmishes ahead.
I need to conserve my strength.
I allow myself one more brief moment of reflection as I feel Justin’s foot in the small of my back, his way of indicating to me he wants me to turn on the radio. After four weeks of this on-and-off behavior, I’m not even angry anymore, I’m just sad. I think of all the work we’ve done over the years. The behavior plans with his teachers and specialists. The home program, the outside speech therapy which we are fortunate to be able to provide him. The relentless adherence to ABA protocol that has helped him so much. The medications we’ve agonized over giving him, the same ones that have provided him, and our family, such a long respite from suffering. I think about how along with the moments of joy and the immense progress he’s made, I have to honor his true path and record these moments too, because these periods rear their ugly heads cyclically. They are one truth of my son’s type of autism too.
And they need to be heard.
I turn the ignition key, remind myself that we have a plan. There will be tests conducted over the next month. There will be at least several more visits with two separate specialists. Our family, Justin’s school, and his therapists are taking action. All we can do is continue to love him, and stick to our guns with disciplining his behaviors. Beyond that, all we can do is wait.
And I hate it.
September 26, 2011
The Most Important Meal of the Day
SNAP!!!! The cracking sound of Justin’s tray being disengaged from its seat stops me in mid-swig from my Coke 90, and I quickly abandon my caffeine fix to rush back to the kitchen table. I look down at his plate and take in the completely disregarded toast and bacon pieces I’d hope would constitute breakfast, and insist that he sit down once again and try to eat something. Unfortunately, me and my boy have been at the “breakfast wars” going on ten straight days now, and I’m running out of ideas.
Over the past week I’ve attempted pancakes (the smell of the first burned batch lingered for days), and French toast (met with such disdain it was as if I’d poisoned it). I would have happily made the supreme sacrifice to actually fly to France and procure croissants for him if he’d just eat SOMETHING (I know, I’m that kind of mom), but since that option’s out, the best I’ve been able to do lately is get a piece of bacon into him. I offer him a strip of cholesterol in the hopes he’ll take it, and instead am met with a forceful shove of the hand, followed by my son standing up and in no uncertain terms disposing of his plate. He’s eight now, and only a head shorter than me. Force-feeding him is no longer a reality, so I let him go.
So much for breakfast being the most important meal of the day.
There was a time five years ago when we actually had to force-feed him, which out of all the distressing issues that arise with some types of autism (and there are many), this ranks up there as one of the worst. Justin’s appetite had decreased a bit prior to me and my husband taking a vacation, but our boy has always had a rather ambivalent attitude toward food, and we didn’t think anything of it. We left for five days, and by the time we returned home he had stopped consuming absolutely everything. In only a week’s time he had begun to take on that skeletal, “starvationesque” appearance, and my mom was fairly frantic.
We all figured once his parents returned and routine was restored, Justin would resume eating. He didn’t. He in fact did not even permit a carb to pass his lips until we’d hired an eating consultant to teach us some behavioral tricks, techniques that in the end amount to fancy force-feeding. It took two days, but eventually he ceased trying to attain his perfect modeling weight, and to our delight, even consumed a vegetable.
It never happened again, but I have it on video.
I admit, I am really frustrated with him right now. This is mostly because I know that like his mother, unless he consumes something edible every few hours he’ll be in a bear of a mood, and I don’t like to send him off to school this way. He was up at 5:30 this morning so we have some time to kill, and as he plays the same scene from Despicable Me over and over, I search relentlessly through the fridge and pantry to come up with an alternative. Nothing jumps out at me (this kid even rejected Pop-tarts, which made my husband wonder if he was really his), until my eyes light upon an egg carton, one I’m justifiably afraid might have been there since the last presidential administration.
Thankfully, it turns out to be democratic dairy.
I know my chances of getting him to eat an egg (it’s a textural thing) are about as great as having a child on the spectrum, but since we all know how that turned out chez McCafferty, I figure it’s worth a try. I recall somewhere in the deep recesses of my brain that he’s become a fan of one of the Tastefully Simple spices I use when I pretend to cook, and I decide it couldn’t hurt to try to bribe him with Garlic-Garlic. I whip up two cylindrical orbs, lead a confused boy back to his seat, and present him with a new meal, fork in tow.
Damned if he doesn’t eat every crumb, with the added bonus of independently employing a utensil.
I’m not sure which is more shocking- that he’s actually eating breakfast, using the same fork he’s rejected for six years, or wolfing down a meal his mother herself concocted. At this moment, I admit, I really don’t care. Justin finishes quickly, gives me a smile and quick kiss so full of garlic I know the vampires will stay away, and happily escorts his empty plate back to the sink. I reward him with the hugs, kisses and praise I thank the entire universe that he’s always craved, and quickly start administering the twelve thousand supplements we have him take first thing in the morning.
I savor this victory, as for years around here that word was an elusive guest.
I also remind myself that I have to keep trying new things with him, even if every instinct in my body says the foreign intrusion will be rejected. Over the past few months I’ve seen him spontaneously request toys on his iPad, respond to a game of “chase” with Zachary, and once (albeit mistakenly) consume a piece of fruit and keep it down. Granted, these are all small accomplishments, perhaps not even recognized (except for the fruit consumption) in most typical homes. But here, these milestones are huge, and I want to make certain to notice, and to appreciate, every single one.
And as I catalogue yet one more battle won in the war for a happy, safe, and productive boy, I feel my stomach rumble, head toward the fridge, and remind myself that my pre-dawn Garlic-Garlic idea was pretty appetizing after all.
August 1, 2011
Care for a Swim?
I slide the glass door gently back into place, and shimmering waves of heat greet me and Zach as we scurry across searing concrete to the water’s edge. He needs no encouragement to break the serene surface of our pool, whose liquid depths welcome us to temperatures reminiscent of bath water. I quickly drop our beach towels onto an empty lounge chair, and wade out three-quarters of the way into the shallow end just to rid myself of the sweat that’s accumulated during our five foot walk/run. I turn around just in time to see Zach descend the last step and plant his feet firmly on myriad shades of blue ceramic tile, hands on hips as he regards me from afar.
I urge him to “swim to me”, which up to this point has meant several consecutive paddles in a row accompanied by a face flatly refusing to immerse itself in chlorine. He smiles, thrusts his arms out before him with serious intent, flexes his feet, and uses the juncture of floor and step as leverage to propel himself toward me. Tiny pockets of air burst to freedom, heralding the arrival of a tow-headed boy who navigates most of the width of our pool underwater, a feat interrupted solely by my waiting arms as he embraces me. Zach plants himself on solid ground, wipes streams of water from his eyes and shouts, “I did it! I swam just like Logan!” It appears the child who’s been convinced all summer that anything more than a two-second immersion signifies imminent drowning is now swimming all of his own accord, simply because he saw his buddy do it two days before.
In other words, he’s acquired this new and vastly important skill simply because he wanted to imitate his friend.
We’ve tried this route before with other integral milestones, generally to no avail. With the guidance of his teacher the winter Zach turned three we attempted our first round of potty training, which ended after four weeks with his lovely educator practically begging us to abort and try again in the fall. We of course had included the requisite rewards as incentives to make deposits in our porcelain potties, and had trotted out various men and boys as role models to inspire him, but at the time, nothing worked.
He was also singularly unimpressed by watching his brother and father relieve themselves the “big boy way”, and equally unmoved by glimpses of his friends at school doing the same. Zach was quite content with the women in his life continuing to change his diaper, and equally happy to leave the men in his life to their own pursuits when it came to toilet habits. When it came to imitating his peers or the main males in his world, he couldn’t have cared less. This attitude has since extended to trying fruits, vegetables and any food group his mother has deemed particularly healthy as well.
Over the course of the past year I’ve seen this attitude shift and slowly disintegrate, making way for a child who’s eager to try new things that previously terrified him if he witnesses someone “cool” doing them first. This past month he expressed his desire to ride the roller coaster with Justin “like the big boys”, which now that he finally meets the height requirements, we allowed him to experience. He’s watched a friend from school scale the heights of a jungle gym with a relative ease, an activity that in the past had seemed completely daunting to my son. I’ve since watched him carefully calculate his chances at survival, vault the structure, and succeed in conquering it. On one particularly dare-devil morning he even permitted a “banana-pancake” to cross his lips, simply because his big brother had tried one. The fact that both slices of carb were subsequently rejected was irrelevant to the fact that at least both of my children had attempted a new food group.
Perhaps I’ll go crazy and try blueberries next. Maybe they will not offend.
This urge to mimic is momentous (of course, I may not think so when he’s a teen-ager), and I hope to continue capitalizing on it in the future. Maybe he’ll watch in admiration as his older brother walks his plate to the sink without being told a thousand times, and cart his own cutlery without my nagging. Perhaps now that playdates are occurring more easily, Zach will display a desire to clean up at their conclusion without prompting (I’ve been told that dream may be a bit unreasonable). As a converted “Skinnerian”, I am enthralled with the different ways I can use this new motivator to coax out more desirable behaviors down the road.
Who knows what could be next. After all, a few feet and a new milestone from our back door, a diving board beckons.
April 10, 2011
Resurgence
SLAM!!!!! Zach and I jump a bit as we’re sitting at his art table, and I quickly smile both to hide the fact my heart has briefly stopped, and that I am completely exasperated. It is, perhaps, the THOUSANDTH time Justin has slammed the closet door this afternoon (okay, slight exaggeration, but it FEELS like it), and my patience is frayed to its ragged, disintegrating ends. Zach asks “What is Justin doing, Mom?”, and I reply “organizing his toys, hon”, but secretly, I admit to myself I really have no idea. While the lion’s share of the playthings from the closet have been exiled to the garage recently due to Justin’s escalating OCD, he has still managed to find something in there to rearrange- namely, his plush toys. Although the positions we have discovered them in have been mildly amusing to me and his father, our overriding emotion upon witnessing this returning obsession has been dismay, and sadness.
For so long, he had been doing so well.
Over the years, as I’ve spoken to people about my eldest son and his neurological disorder, I’ve found most conversations end up centering around his lack of speech, and how difficult that must be both for him and our family. While I don’t want to minimize this deficit (believe me, there are many days I wish the child could just TELL me why he’s rivaling my PMS-state), it certainly has not been his greatest impediment to functioning in the “real world”. Even the aggressive moments that plagued us, his therapists, and his teachers over the years were scattered enough to be “livable”, until the end of his sixth year when the incidence increased so greatly we sought the assistance of medication for him.
Although the non-verbal aspect of his autism and the pinching have both been considerably daunting, the single greatest component of his disorder that affects his life the most is the OCD/ perseveration. It’s what clued me in at his six month birthday that something was amiss (when your infant chooses to spend his entire day spinning a faux fish bowl throughout the hardwood floors of your home, it’s time to contact that developmental pediatrician). His predilection for rotating objects, rearranging photos around our home, or hiding one shoe from a pair in absolute obscurity (his mother’s personal favorite) prevent him from engaging in more appropriate pursuits, effectively limiting his world to a minimum of activities.
There are mornings when I almost have to carry him out of the house to get him on the bus, and not because he doesn’t want to go to school, because he’d live there and marry his teacher if he could. It’s simply that the random pattern of paper slips, and oft-ignored Xeroxed reminders on our chaos of a kitchen table are not arranged to his liking, and he can’t leave until they are. Perhaps it is that I have erroneously placed a new photo of he and his brother in the family room, rather than mid-way upon our living room bookshelf at an angle that is just so. After all these years I still cannot discern the precise patterns he is striving for, and his penchant for order is enslaving him. There are many days his closet machinations would leave him in tears if we weren’t constantly redirecting him, in our own attempt at ritual.
There are as many days that little face, desperate in his desire to get it “right”, engenders tears in me as well.
The thing that brings me and his father most to despair, is that the OCD comes in cycles, is stealthy in its resurgence. It’s only been the last six months or so that it’s escalated to this level once more, and once again, it doesn’t seem to be precipitated by anything in particular. In the past, it seemed to be high fevers that heralded the return of the full body tics and desire for order that would consume him for a few months, then dissipate. Since he had those glorious ear tubes inserted last fall there have been no fevers, no antibiotics, no palliative measures taken to address the always-accompanying upset stomach that perhaps were the triggers to his obsessive state. Despite all the progress he’s made socially, academically, and emotionally, this bane to our existence, this barrier to his happiness, is simply back.
Of course, we’ll address it to the best of our abilities. We’ve found a new neurological pediatrician with whom we feel more comfortable (and yes, if you’re wondering, she has a waiting room). Jeff and I felt she really listened to us at our first visit, was open to the suggestion we’ve been hearing from several professionals in Justin’s life that he might have a dual diagnosis of both autism, and actual OCD. She’s willing to think out of the box a bit with medications, comprehends the limits of a therapeutic approach, and understands we have thoroughly explored the tenets of ABA to alleviate his suffering. There is even the possibility of enrolling Justin in a study someday, if we collectively feel it will be to his benefit. We’ll return to see her in a few weeks time, and I feel confident all options will be evaluated, that he is in good hands, that my boy is receiving the best care possible.
But I can’t help wondering, if despite all our attempts to quiet the sometime chaos of his beautiful mind, if this is as good as it gets.
December 29, 2010
Purge
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.
Delete.
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.
Vengeful delete.
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.
Confident delete.
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.
Joyful delete.
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.
Exhausted delete.
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.
December 12, 2010
Lord of the Pins
It’s part three of Lord of the Pins today, and I pinky swear that this will be the last installment, but what happened this week was just so huge, so monumental to our family, I simply had to write about it once more. We had our second outing at our local lanes, and with one small adjustment to our activity, one seemingly trivial nuance tweaked, everything changed. I’m not sure whether the biggest miracle is that I remembered to inquire as to whether the establishment had a “ball ramp” for its physically challenged players, or if it was Justin’s reaction to the additional equipment. I’ll tell you this though, my boy loves bowling now, barely needed the generally requisite reinforcers to get him to stay through the entire event, and reacted to the timer in a fashion that would have made any ABA practitioner proud.
And I have a sore ass and the pictures to prove it.
This time I had the pleasure of entering our neighborhood bowling alley well-rested and healthy, eager to be a little more hands-on with Justin, as I was certain we’d need to “work” this afternoon nearly as much as we had the previous week. This time “Miss M” came prepared with a pictorial activity schedule comprised of photos snapped at our previous session, so Justin had been “prepped” to understand the cycle of events: bowling, video, snack, bathroom, and exit. I’ve done something more basic with him in the past (trust me, I’ve gotten some interesting looks capturing precious moments in mall bathrooms over the years), and I’ve never really been certain how much Justin understood of where we were going, or if the advance notice really helped. I hoped, since he is generally compliant, that prior notice of what was about to take place might alleviate the crankiness about the entire endeavor, that acceptance about the unfolding afternoon might just facilitate a bit more fun for him.
A girl can dream.
We set up in the same lane we’d been given the week before, and within a minute the proprietor had been true to his word and delivered the silver device that would hopefully expedite our ball du jour’s travels, and thus elicit a bit more enthusiasm from our boy. After mentally congratulating myself for not only having the idea but retaining it for AN ENTIRE WEEK we found the appropriate ball for Justin, angled our contraption to try to ensure success, and faded our commands to gestural prompts in an attempt to get my son started. For a brief moment he simply looked at the metallic obstruction and smiled, and I SWEAR he remembered using one at that birthday party years ago. An entire herd of elephants has nothing on Justin’s ability to recall.
I try not to be jealous of my own offspring.
He quickly retrieved his purple friend from the waiting conveyor belt, placed his prize on top of the ramp, and shoved that ball with all his strength with a mighty and enthusiastic “EEEEE!” that filled the confines of the alley with its glee. After “Miss M” removed herself from the photo opp I joyfully slid over to the next lane, forgetting momentarily that the bridge between was the only secure spot for bowling matrons, and promptly landed squarely on two body parts whose heroic sacrifice saved my wrist from serious injury. I stayed down for a moment while I physically regrouped, and was actually able to get a great angle as Justin was eager to finish the frame and was completely ignoring his clutzy, semi-incapacited mother.
Yes, I got some shots. Yes, I’ll share them. And no, there’s none of me on my backside. I’m trying to regain the last vestiges of my pride, cut me some slack.
The upshot is, Justin made it through eight of the ten frames without a peep of protest. When he did eventually complain he had no issue being redirected to the table for his favorite movie scenes, even referencing the timer on occasion to see what amount of his leisure activity was left to him. He completed the last remnants of the game relatively passively, was excited to see the bowling photo shorn of its Velcro attachment on the strip and replaced with representations of those appealing vending machines. He sweetly sat back down after an attempted escape when we showed him the timer had not yet been reduced to white, and he happily accompanied me both to the bathroom and the car. We ended up spending an extra twenty minutes at the establishment due to his willingness to follow the new rules, but the greatest accomplishment that day had nothing to do with mere compliance. Yes, he stayed, and yes he listened to his mommy.
But this time, he actually enjoyed it.
As I’ve mentioned before I’m a planner (my close friends and family are collectively laughing at this understatement of the decade), and I’m constantly trying to think of activities that Justin will actually like rather than simply endure because it’s been requested of him. I’m also always hopeful I’ll discover things my son will be able to do when he’s older, when I might not be around to assist him. My grandfather was an amazing bowler well into his eighties, and hopefully those genes (as well as a multitude of others) have skipped a few generations and are firmly entrenched in my boy’s DNA mosaic. I like to think I can broaden Justin’s “fun repertoire” further than overpriced pretzels, musical stuffed animals, and movies from Pixar before I go.
But there’s another imperative here, one I know is equally important to increasing Justin’s tolerance of outings, and it’s this. There are a multitude of things I took for granted before his birth that I now know he won’t participate in, and I like to imagine I’ve done a pretty good job at accepting the situation (never liking it, but yes, accepting it). I am well aware that to retain a sliver of my prior sanity I need to learn to let go, and I try, I really do.
But I’m not ready to let go of this dream, the desire for true inclusion within the confines of my own family’s story. I’m not ready to embrace a future that only includes half of us every time we leave the house, or requires two vehicles for attendance. I’m not at peace with my youngest only having memories of his older brother’s cantankerousness on outings, not comfortable with no opportunity for our entire clan to just revel in being together. At this juncture, I am simply too stubborn to accept defeat.
And the joy of it is, perhaps with a little conditioning, a few new rules, and the wisdom of our “divine Miss M”, my wish might be granted after all.
September 29, 2010
Blades of Glory
The doors of the Hockey Palace whoosh shut behind us as Justin and I slowly descend the stairs to the rink below, me clutching his hand tightly, my son with a death grip on the banister as several eager boys rush past us. I can tell he is both excited and confused by my choice of outing, not yet sure what to make of the transition from the humid air outdoors to the frigid climes (okay, I’m exaggerating) of our town’s sole venue for ice skating. In the last six months I’ve cajoled one kid to mount a horse, another to kick a soccer ball, and both to attempt to ride the waves of the Atlantic Ocean. I’m ready for a new challenge, and putting my autistic seven-year-old in shoes with blades, the one who still lacks body awareness and is tentative about climbing stairs, seems to be the next obvious choice in our quest for athletic greatness.
This is not the first time I’ve questioned my sanity.
I’ve been told that Justin needs no prior experience to participate in the Challenger Hockey Program, and since I’ve been letting the skating lessons slide in lieu of ABA and speech therapy, I was grateful for that news. We’ve never been on the ice together before, in part because we just haven’t had the time, and in part because despite two years of lessons and my all-consuming desire to be Dorothy Hamill (yes, I’m that old), I still can barely keep myself upright on frozen water. At this point Justin is more than half my weight, and I’m not even certain I could support him if I gave up the skates and wore my running shoes. To date, I haven’t been brave enough to find out, and the great thing is, with all the volunteers involved in this program, I won’t have to.
Eventually we make it down to the fairly controlled chaos of the boys’ locker room, where about ten special needs kids are patiently waiting for approximately twenty neurotypical buddies to outfit them for the sport. The coach, whom I’ve met before on several occasions when I didn’t look quite so tired, quickly assigns two pre-teen boys the enormous task of sorting through a giant pile of helmets, knee pads, and ice skates so that my son will be protected. Our helpers bound over, say “Hi Justin!”, solicit high-fives from him, and start grilling me on shoe sizes and head width, running back and forth with different options, remaining cheerful even when a piece of equipment comes up woefully short. These boys know their stuff, and as I struggle to remember Justin’s new shoe size, I tell myself to keep my wits about me.
Apparently, hockey is serious business. And I thought being a soccer mom was intense.
To tell you the truth, I don’t really have high hopes this is going to work out for Justin, as I’m not even sure he’ll tolerate wearing something without flat soles, much less the daunting prospect of helmet with chin guard and multiple flaps I’m certain I’ll never disentangle correctly. Over the years I’ve developed a philosophy with the kids that we try everything once, and if we survive the experience and there’s even one moment of joy (theirs, not mine) involved, we’ll stick with it. I’ve also given myself the out that if either child hates the activity, we’ll move on to something hopefully a bit less tortuous. After all, my mom let me out of ballet lessons when I figured out I was the only girl after two months who still couldn’t lie on her stomach and put her feet on her head. I owe my own offspring just as much kindness.
For the next twenty-five minutes, and that is a long time in autismworld, our two new friends work diligently to complete Justin’s outfit. Elbow pads are found, the correct helmet size discovered, the fourth pair of ice skates is the charm. Justin even permits our assistants to remove the head gear twice when we figured out the body armor needed to be applied first, which in and of itself, is a miracle. He only tries to make a break for it twice, but sits down quickly when I tell him we have to wait, consuming two juice boxes which I’m terrified will mean the removal of all the accoutrement if he has to pee. Hell, it took almost half an hour just to get him outfitted, I’ll be damned if this kid won’t at least make it out to the ice once.
Finally, we’re done, and although he keeps slipping off the gloves, which frankly is something he does all winter anyway, he’s ready to go. One of the boys gets on one side of him, I take the other, and together we half carry, half push him to the entrance of the rink. Justin is looking less than enthusiastic about the experience but complies, and before I know it, he is through the door, seated in a chair, and has his own personal chauffeur, a teen-ager far more adept on ice than I’ve ever been, whisking my son around our rented oval like he’s been doing it all his life.
I realize, all I have to do is watch. If I had a frappacino, the moment would be perfect.
There are just so few opportunities when I’m with the kids that I’m not completely “on”, that I’m grateful to be able to simply wipe off a patch of ice and watch my son get whipped around, happy to be able to take in the entire picture of what is transpiring today. I watch, and see a dozen kids in motion, children with all kinds of disabilities, both physical and neurological. Some, like my son, are in the “chair stage”, being pushed around like emperors in their own personal thrones. Several others are holding on to walkers for dear life, escorted by young men clearly enthusiastic to be here at what must be the crack of dawn for them this Sunday morning. A few more experienced lads are actually shuffling slowly on the ice, gaining and losing purchase on the slippery surface, having a ball even as gravity betrays them and they tumble forward. There are over two dozen volunteers here today. They are all teens or pre-teens. They’re here because they love the sport, and because they want to help. I don’t get emotional very often these days, but I feel my eyes welling up, completely charmed by watching adolescent boys thrilled to help my son, and in most cases, other complete strangers, try to participate in a team sport.
And no, I’m not PMS.
Within ten minutes Justin has houdinied off his skates, gloves, elbow pads, and managed to shimmy off a shin guard wrapped around his limb with what appeared to be industrial-strength masking tape. He is clearly unhappy with the situation, and soon he and a half-platoon of boys trying desperately to make him smile have deposited him back at the exit, looking to me for help, hoping I’ll solve the problem. I know I can’t, and that unlike the horses, this won’t be Justin’s thing.
And although I haven’t discovered a new love for my son, I can’t help but walk away exhilarated by what I’ve seen, by the ramifications of today. Without doubt, at least in this town, it is a kinder, gentler world out there for kids with differences. He has more options for fun than he would have had twenty, even ten years ago. People, children, pre-teen boys, actually want to help him participate in their world.
Somebody gives a damn, and I even got ten minutes of “me time”.
As we head back to the locker room where the sweet manager hugs my son and tells me no matter what, we’re welcome here any time, I know today, in his own way, Justin already scored.
August 2, 2010
Comparisons are Odious
Both of my sons have been fortunate enough to be the recipients of many hours of well-planned and well-executed Applied Behavioral Analysis, conducted in two different states, through several different agencies, by over a dozen therapists. All of these therapists had their individual talents and strengths, and knew exactly how to play to them. Several were gifted at ITT, or intensive teaching, chipping away at the deficits my oldest son possessed and replacing them with coveted skills. A few were phenomenal at working with my son in the NET, or Natural Environment Training, teaching him to generalize those skills to a new location while employing different materials. Some of them were frankly brilliant at discerning exactly what reward was required to motivate my reluctant child on any given day. One or two were experts at everything.
We were lucky enough to have one particular therapist who was talented in all aspects of ABA, with the added bonus of being a mother to an autistic child herself. In addition to helping me become a better therapist she often gave me “life tips” that were invaluable, contacts to an agency, advice on how to handle travel or a particular behavior, or sometimes just counsel on how to get through the day. She had a wonderful rapport with Justin, was one of the few teachers he would voluntarily embrace when she came to the door to work with him. She was an extraordinary practitioner, Ivy League educated (which does not always translate to practical skills, but in this case, did), savvy in the ways of wooing autistic children to work, and in general, an exemplary human being. Plus, she was funny as hell, a bonus to me as I spent many hours a week with her. By that point, I really needed a laugh.
One day, a few months into her tenure with us, she told me a story about something that had taken place years before in regards to her own child’s therapy. It seems one of the women sent to work with her son also had another client a few towns over who was exactly the same age as our therapist’s son. For whatever reason, on this particular day, this woman thought it would be appropriate to share that the child in that other town was making much more significant progress than our therapist’s child, and that said progress must be due to parental involvement. She was adamant in her belief that if Justin’s therapist tried just a little bit harder, her son would also be talking, acquiring skills faster, behaving better.
Truly, I’d like to hunt that woman down and have a chat with her.
Ironically, I’m often on the other side of this story these days with Zachary. People both inside and outside of the “autism business”, those who know that he is mildly affected, are generally stunned by his progress, his efficacy with language, his plentiful eye contact, his evocative imagination. Individuals who do not know he shares the same condition as his brother have often commented on how grateful I must be that he has been “spared”, and are shocked when I tell them this just isn’t so, that barely a year ago he was practically mute, unable to complete the most basic of skills, a wisp of his former gregarious self. In both situations I am generally praised for how far he’s come, at the choices I’ve made for him, for all the hard work I must have conducted with him. Usually I just smile, but I am incredibly uncomfortable at these declarations for two reasons. In part, I know in my soul that Zachary’s miraculous conversion is predominantly due to the fact that his brain was simply able to recover his lost skills, his desire to communicate, and his need for social interaction. I’m also in discomfort when I hear this praise because I immediately think of Justin, who has come just as far in his own way, but would never be mistaken for a neurotypical child, even on his best day.
The truth is, Justin had far more intervention than Zachary had, in part because he was diagnosed five months earlier, and in part because at the time he was my only child, and my only concern. Justin was in a thirty hour a week behavioral program before he turned eighteen months old, which is a rarity now, and was unheard of in 2004. My husband and I hired a fantastic Board Certified Behavior Consultant to train me, and we had a few therapists help out several hours a week. My mission in life was to ensure he spent every conscious moment either engaged in therapy or at the very least interacting with someone, and for the most part, I succeeded in my desires. When we moved to New Jersey we had the collective experience of employees from the Douglass Developmental Disabilities Center, one of the most well-respected agencies in the state. In short, he had both the Cadillac of interventions and an obsessed mother who spent every waking moment trying to eradicate his autism. I thought we could “save” him through sheer effort and will-power, that through our collective efforts he would reside in the land of the 10% of children who recover, or the 20% who lead some type of independent lives.
If you’ve been reading this blog at all, you know he does not live there.
I guess in the end, I have this to say. Early intervention and diagnosis are both crucial to the arc of progress a child will make. Quality and quantity of said interventions will have an enormous impact on acquisition of skills, the opportunity to develop a system of language, the desire and ability to engage in the most basic of human interactions. I’m not refuting any of this, nor in disagreement with the myriad studies that support these statements.
I am, when all is said and done, a science girl after all.
The truth is though, in the end, Zachary walks in our world because he has the ability and desire to be there. I am thrilled for him, for the opportunities he will now be afforded, the chance to make friends, integrate into a “regular classroom”, drive me insane with his constant questions and demands. I welcome it all.
But I know in my mother’s soul, he is here in large part because whatever type of autism he has allowed him these opportunities, that all the hours of working with him contributed to his defection from a pure world of autism, but are far from the only defining reason. I am just as proud of him as I am of his elder sibling, the one who has striven so hard to eradicate his aggressive urges, who struggles every day to repeat the smallest of syllables, who envelops his parents in affection and appreciation on a daily basis. In my eyes and in his own way, Justin has come just as far as his brother, on his own curve, and in his own time.
And as I think of that woman, the one who brought such unnecessary pain and self-doubt for a brief period of time into my friend’s life, I am reminded of an age-old adage, one that for once, is absolute truth.
Comparisons, indeed, are odious.
