April 25, 2012
It’s 2:00 AM, and through moonlit shadows I see my son standing next to his bed in my mother’s guest room, searching for me in mute appeal. I slide off the window seat that doubles as a sleeping receptacle and walk towards him, with the intent both to comfort him, and to beg him to return to slumber. We do this dance for the next forty-five minutes or so, until sheer exhaustion overtakes him and he clambers back under the sheets, and lets me wrap him cocoon-like in his airplane sleeping bag once more. I slide back into my borrowed bed, knowing sleep may be an elusive fantasy not again realized until many, many hours from now. I resign myself to consciousness, and hope that the airplanes on Justin’s sleeping bag are not the only ones he comes in close contact with in the next twelve hours.
In theory, if we’re very, very lucky, for the first time ever my boy will step foot inside a plane.
My family is hoping to fly to Disney this fall, and I knew that if we had a chance in hell of getting my almost nine-year-old son who has moderate-to-severe autism in the air, we’d better have a practice run. Luckily, my mom had heard that US Air was running a free program with Autism Inclusion Resources out of Philadelphia Airport, one which caters to families with autistic children. The event takes families through every aspect of the travel experience, from checking baggage and security checks, to boarding the plane and baggage claim. Months ago we were able to secure a spot for their spring event (they generally hold it once in the spring, and once in the fall), and at the time I was quite eager to see how Justin held up, and was fairly confident he’d love every aspect of it.
Unfortunately in November he became ill with a garden-variety virus, one that when it released him left behind some unwanted extras. We saw the return of aggressive tendencies which had lain dormant for years, body tics which shook him from head to toe, and a vacant expression that often claimed his countenance for hours at a time. His teachers and home therapists were concerned as well, and after it became apparent these unwelcome afflictions weren’t going to disappear any time soon, we sought help. Four months, three specialists, a debacle of a medicine change, and half a dozen tests later, we were back at square one. We put him on the original medicine that had seemed to improve his life so much, and upped it a bit. Within a few days we saw some improvement.
And as I contemplate that progress on my cushy window seat in the wee hours of the morn, I remind myself we’ve only been dwelling in that more peaceful oasis for a week. Nothing with autism (or life in general), is ever guaranteed.
Eventually strong sunlight banishes the moonbeams from view, and after having caught another hour or two of rest I see my son stretching from across the room, a glorious smile on his face. It’s a good start, and his ebullient mood carries him through breakfast and that semi-harrowing rush hour traffic to Philadelphia International. Thankfully we’ve been well-prepped by Autism Inclusion Resources, the non-profit sponsoring the morning.
I’ve had a phone interview with one of the founders, Becky Jacket, which helped me both envision how the day would unfold, and imparted valuable information to the group as to how to make the day more positive for Justin as well. We’ve been sent a social story, family travel tips (since I fly these days about as frequently as I win the lottery, these were particularly valuable), and a detailed itinerary as to what to expect from the experience. We are as prepared as humanly possible.
But sometimes with Justin, that doesn’t count for much.
I’m questioning my decision to even attempt this excursion about five minutes in, when my son is almost pulling my arm out of my socket in front of baggage check, imploring me to quit this place and return to grandma’s car. I whip pepperoni out of my purse and parcel round slices one by one into his outstretched hand, making him mouth the word “more” after he’s consumed his morsel, hoping it will buy us some time.
It’s his latest favorite snack, and I’m conferring magical properties upon it at the moment, because we’ve made it this far, and it’s suddenly apparent to me how much I want this to work for him. I know, it’s just a family vacation. There are so many families struggling just to pay for services for their autistic kids, and we’re contemplating the Magic Kingdom. I completely comprehend how lucky we are to be in this place.
But honestly, the last four months have been hell. I’m ready for something, anything, just to be simple. And for once, it is.
Cold cuts seem to do the trick for my boy, and he waits patiently as Rick Dempsey, ADA coordinator for Philadelphia Airport, lays out the impending steps for the waiting families and children. There are only a few participants today, one with a child who is similarly affected, and several who are very mild in comparison. Miraculously all of them, including mine, make it through his welcome speech, which is great practice for the multiple waiting periods which occur at any airport. Justin stands calmly next to us as we pretend to check our luggage and acquire our boarding passes (families can actually check their bags, we chose not to), and happily takes my hand as we venture on to security.
This is where I anticipate the most problems for my boy. And once again, he simply blows me away with his compliance.
We sail through the checkpoint, Justin standing calmly at our sides as we reclaim shoes, his iPad, and multiple electronic devices devised to keep him entertained on our journey. I have a bonding moment with an airport volunteer who praises Justin for his behavior, and shares his own story of his son’s autism. I feel my heart-rate slow a bit, my pulse begin to settle for the first time since that middle-of–the-night awakening. My boy waits patiently for the entire group to finish, and eagerly walks beside me to the boarding area, where once again he is required to wait for approximately twenty minutes.
Generally, Justin wants to leave even the most reinforcing destinations after twenty minutes. The fact that we’re still here, pepperoni not withstanding, is a miracle.
Finally, we’re called to board the plane (destination Philadelphia), and my son revels in it all. He wears his seatbelt the entire “trip”. He excitedly consumes the pretzels the kind airline attendants offer to him. Justin and I even take a jaunt to the bathroom when the line clears a bit, and I discover he’s an old pro at navigating that slim space with his mom. I even have the opportunity to thank some staff and tell them how much this opportunity means to us, how grateful we are that they’ve volunteered their time.
They share with me that they feel the same. I am inordinately proud I manage not to bawl all over them in the back of an airplane. Eventually we “land”, and make our way to baggage claim. I walk my son around the corner from my mom and ask her to heave our suitcases onto the carousel, and I show Justin how we relocate our luggage (of course, that is when his mother recognizes it). Our leader thanks us for coming, when it should be us thanking him and AIR.
Every single participant involved, from the volunteers at Autism Inclusion Resources and participants from the Department of Transportation in Washington, DC, to the employee/volunteers from Philadelphia International Airport to the United Airlines crew and the pilot in particular (who flew in on his day off to help), have been wonderful. None of them could have been more professional, or more prepared. Our family is forever indebted.
Finally, the experience concludes. But the ramifications for Justin, the doors this day has thrown wide for him for future opportunities to travel, are just beginning to open. From the McCafferty family, to all those who participated in the making of this day, we thank you from the bottom of our hearts.
Look out Disney. Here we come.
To learn more about the program, check out the Philadelphia International Airport website at: http://www.phl.org/ada.html/, and scroll down to the section entitled “Airport Autism Accessibility Program”
Email address for the AAAP: email@example.com
Email contact for Autism Inclusion Resources (Wendy Ross) firstname.lastname@example.org
Email contact for TSA(Technical Services Representative) at PIA (Lisa Bailey) email@example.com
April 4, 2012
It’s been almost six years since the McCafferty clan took a family vacation together. This is in part due to the fact that more than half a decade ago we relocated from Washington, DC back to the Jersey shore, which when not obnoxiously crowded, is a vacation in and of itself. We also eschewed travel because within months of taking up residence in the Garden State, I found myself quite unexpectedly pregnant
For obvious reasons, the prospect of a trip with a young son with moderate autism, coupled with an infant, was terribly unappealing to both me and my spouse. Finally, just as we were beginning to consider leaving the house again our youngest son regressed, losing almost all of his speech and his spark in a matter of weeks.
Let’s just say at that time, travel wasn’t at the top of our priorities.
It’s been a few years now since those wretchedly grim days, and although Justin has chosen to enter a decidedly challenging phase, I’m beginning to feel I must heed the call of Disney. Zach will be almost six this fall, Justin is pushing nine, and I’m beginning to think we have a window in which to attempt this, and it’s starting to slowly close. Given that I’m pretty tired these days, I may not be pushing it open in the near future. It’s time to bite the bullet and give it a go.
So happy they still serve wine on planes.
We’re beginning to gather our resources for the trip, showing Justin ancient VCR tapes from his grown cousins that describe the myriad pleasures of the resort, and most importantly, have a “run-through” planned at a Philadelphia airport (I will write more after it takes place this month). Quite honestly I will discuss the possibility of sedatives for the plane ride (no, sadly, not for me), as there is not a chance in hell we’re all driving to and from Florida together. If we can pull this off, I intend to fly there and back with the same amount of kids with which I started.
I know. Those extravagant dreams again.
There is one resource that will be an integral component of our trip, what I like to call my “travel-Bible”, a gem-packed list of travel tips for travel with a child on the autism spectrum. It’s called “Traveling with your Autistic Child” by Babette Zschiegner, and I will have this tome practically adhered to my body throughout our entire stay. Yes, in the interest of full disclosure, the author happens to be my friend, is in fact one of the actresses in my play, “Raising Autism”. It’s still a great book, and I anticipate it will be saving my sanity on at least several occasions as we attempt this adventure.
That, and of course, that glorious wine.
There are several wonderful features about her writing. First of all, she’s the mother of two children on the autism spectrum and she’s traveled extensively with both of her sons, so none of her ideas are mere conjecture. Second, she explains in great detail how she and her husband conquered each stumbling block to family fun along the way, generally suggesting more than one solution to each problem that arose. Last, she condenses all her fabulous tips into an easy-to-find guide at the end of the chapter, for those times (and in this household, there are many) where we need a condensed answer, and fast.
Quick is key around here.
The author has broken down her tips into eight easy-to-read chapters, and covers such topics as where to go, what to bring (I will be memorizing this list), and special diets. She even devotes a number of pages to handling a child who wanders, which is a particular concern to many families with children on the spectrum. My personal favorites however, and the two that convinced me that we should give this travel gig a go, are the two centering on dealing with challenging moments, and sleep.
The latter segment being my personal fave.
In her chapter about handling challenging moments, she reminded me to always have a Plan B in place (sometimes C and D are helpful too), and to remember that there will frequently be difficult moments in life, moments which (hopefully) will eventually end. Perhaps my favorite reminder for “happy travel” came at the conclusion, where the author reminds us all that we can’t control what others think about our child’s behavior, and most importantly (and happily), we will probably never see those people again.
I employed that one a lot in Justin’s early days, and it’s one maxim that continues to ring completely true.
I don’t want to give too much away (no spoiler alerts here), but I recall as I read her work the first time I kept wondering if she’d answer all of my questions, and eventually, she did. Of course there are some strategies that won’t work for either of my children, as all of our offspring are so different. The vast majority will be incredibly helpful however, with some adaptations to be expected.
Trust me, on this trip, “Traveling with your Autistic Child” will remain in my carry-on.
If you’re considering travel with one or more children on the spectrum, I highly recommend Babette Zschiegner’s book. To purchase or read more about it, please see the link below:
Best of luck to you, and happy travels!
November 18, 2011
This week’s Gratitude Attitude goes out to my mom and Aunt Kate, for helping make “Sleepover Part Three” a resounding success. Disney, here we come!
June 18, 2011
“Mommy, where’s Justin?” my four-year-old inquires for perhaps the thousandth time, and I suck back my irritation (a technique I perfected during my twelve years teaching in elementary school), and tell him again, “soon”. A minute after imploring him for the millionth time to “please stop kicking my mutilated shin” under the picnic table, Justin indeed makes his glorious entrance. It’s Field Day at his school, and the festivities commence with every class from age three to twenty-one taking a promenade around the front entrance, until it’s finally my son’s turn.
Zach starts waving wildly as Justin’s teacher approaches and salutes him, and I crane my neck to look for my boy, hoping he won’t make a break for us and want me to take him home, as he has been wont to do in the past. Seconds later he comes into view, clutching the hand of his aide, looking mildly confused since he’s never participated in this pageant prior to today. He steps down off the curb and sees me, his grandma, and his little brother across the empty parking lot, and stops dead in his tracks, holding up the entire procession. I hold my breath to see what he’ll do next.
And then, he smiles.
This isn’t just any smile. This is his hundred watt, “I can’t believe three-fourths of the people I love the most are here right now” smile. With mild prompting from his para he waves, then continues on his way, checking back periodically to see if we’re still there.
Trust me, we’re not going anywhere.
Frankly, as I sit on my cold folding chair and watch the students of Search Day School parade by me I am ecstatic, because even a year ago, I would not have been able to remain at this picnic table. Although Justin enjoys parties, in his mind I am generally his primary reinforcer, or the equivalent of Disney. During his early childhood years in his first public school placement, I spent many a desperate hour in his classroom trying to convince him that musical chairs and chips were a far better deal than going home with mommy. There were entire years in our local school district where I didn’t attend any of his parties save the one dedicated to his birthday, which killed his shutter-bug, stay-at-home, mom. It came down to this, as things so often do with autism- my having to choose to participate in a party which made me feel like a good mother, or boycotting the event and letting him have fun. I grudgingly chose the latter most of the time.
But as I look at him now, I realize at these events, I may finally be eligible for front row seats.
The children circle around the entrance way and reenter the building, as classes are staggered for this extravaganza, and it will be a good twenty minutes before we see Justin again. Since that doesn’t meet with King Zachary’s approval I take him on several walks around the premises, craning my neck back periodically to make certain we don’t miss Justin’s second debut. We wend our way back through brightly decorated picnic tables in time to see Justin march to the field for the first of his feats of strength, and I simultaneously watch my youngest commence meltdown mode.
This is completely inconvenient, as I seriously require commemorative photos of this event. Otherwise, my scrapbook will be devastated.
Just as I think I’ll have to do a “Sophie’s Choice” with my children, Jodi Ussuri, administrator extraordinaire, steps in and offers to take him off my hands for a while. Zach deigns to take her hand and walk/skip/hop/jump/run with her, which is not surprising since she has three kids, and is clearly a fun mom. When her babysitting stint is over, the words “bless you” accompany Zach’s tiny paw as it is handed back to me. These are words I frankly should have imparted to her, as the absence of my youngest enabled me to witness my oldest’s glory.
And glory, it was.
Sure, it was lovely that Justin carried an over-sized ball across a field successfully, then bounced on it as his classmates followed suit. Under his watch not one single tennis ball escaped the confines of a waiting barrel, deftly maneuvered for guaranteed capture by school personnell. He navigated a balance beam with relative ease, and at least attempted to sneak under the “luau-esque” wooden rods adjacent to those parallel lengths of wood.
In other words, Justin rocked Field day.
While I was thrilled by how far he’s come within the physical realm of things, happy to see him willingly and successfully participating in events requiring balance, concentration, and manual dexterity, there were a multitude of far subtler reasons I was grateful to regard these activities. Throughout every single request and demand, I witnessed my son’s eager compliance. I watched as he patiently took turns, neither rushing through nor attempting to avoid the task before him. Most importantly, I saw my son search for his family at every single station, executing his dazzling smile at us before switching to serious concentration mode, overjoyed we watched him perform.
Not only did he enjoy the festivities, he was ecstatic his family was there to cheer for him. Trust me, me and my mom are still hoarse.
Eventually, it literally rained on our parade, and students were hustled inside to consume their lunches while the three of us escaped to Panera for soups and salads (what a win-win day!). We returned to take home an excited Justin, a child happy to escape his routine whenever it includes going home early with me. As I walk him back to the car, I reminded myself that it’s not just the efforts of this particular school staff that have brought him to this place. In every moment of desired behavior, every nuance of glorious grin I received from my boy today, is the work of five schools, dozens of aides, teachers, specialists, doctors, Early Intervention workers, the fortitude of two parents, a patient brother, and the stubborn zeal of one determined grandma.
It takes a planet, not a village, to raise a kid like Justin.
We reach our waiting SUV chariot, he sees my mother and his sibling, and it’s like Christmas morning all over again. I strap him into his seat, kiss his forehead and tell him how proud I am of him, activate the GPS (just in case), and head for home.
And as we glide into traffic, I remind myself to live a little in the moment, and just be happy we’re here.
April 13, 2011
My mom likes to send me online articles related to autism, and due to her diligence I recently read a piece entitled “iPad Not a Miracle for Children with Autism” (which, ironically, I perused after I had just posted a blog entry about my son’s use of the device, entitled “It’s a Miracle”). In it, the author claims that the device itself is not worthy of Vatican anointing, but rather, “the miracle there, as it always has been, is the parents and professionals who work with children with autism.”
Of course, he’s right.
I read through the entire article, then skimmed through the commentary (which with these kind of pieces, is often as interesting, if not more interesting, than the work itself), and reminded myself once again how imperative it is that we facilitate Justin’s acquisition of this device. He’s already employing it at home far more practically than he did his former augmentative machine, initially requiring only the slightest of physical prompts to make his requests with it, prompts that have now been downgraded to my voice only. Justin’s not debating scripture with me or telling me which American Idol contestant got robbed, but slowly, incrementally, he’s incorporating more dialogue into his daily routine. It’s still not a spontaneous event for him. It may never be.
And I have to accept this.
When I was sifting through the responses to the article however, I came upon one mother who described what the device had meant to her son, now almost seven, a child the same age as Justin is now. She described his severe apraxia and limited communication skills, and how over the course of the past year the technology had diminished some of those challenges for him. He was now manding for preferred activities, actions, and even specifying which rides he preferred at Disney World. Social questions were being spontaneously implemented, even down to requesting a particular restaurant within the confines of a mall they had recently frequented. In short, with the touch of a fingertip, the world had become a locale far more broad for her child.
And I still have no idea if this tool will widen Justin’s horizons to a similar degree, ever.
I will say however, that when I watch him use the iPad, I’m seeing my son captivated by something other than food, singing plush toys, or DVD players for the first time in almost eight years. Due to his intelligence and fairly tender age, I will continue to indulge in the hope that this device may be the vehicle through which we communicate better with one another, and far more importantly, the one through which he can get his needs met in an increasingly complex world. I’ve never given up on that dream, and I never will as long as he’s breathing. For years now his progress in this area (outside of academics) has remained fairly static, despite speech therapy, the diligence of his teachers, and his maniacal mother. I’ve learned to redirect my expectations of progress into other areas of development, and they’ve mostly been fulfilled. Despite my desire for him to converse, I consider us to be fortunate in this regard.
But this slender, chic, rectangle has at the very least returned hope to this practical and pragmatic woman, hope that my son, in his own way, might one day “talk”. And if nothing else, I consider that hope to be my miracle.
April 4, 2011
“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.
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.
March 6, 2011
It’s the one millionth time we’ve driven home from the boardwalk arcade this winter, and the familiar cadence of Justin’s vowel sounds is once again caressing me like a warm, well-worn blanket. My boy is rocking out in the back seat to Yaz (he selected the CD, he has fabulous taste), and as we reach the crescendo to Midnight I glance back in the mirror so I can view his happy countenance. We’ve frequented this place so many times since the cold weather enveloped central Jersey that we’ve begun cycling through all the venues here, but one thing remains static- our culminating trip to the fudge shop.
Like I said, my boy has fabulous taste.
I have to admit I was bored today, encumbered by the habitual malaise that envelops me on the cusp of every new season. Easter is late this year, which means the rides at our local boardwalk won’t open until mid-April (thank God for Great Adventure, my new best friend), and I have completely run out of things to do with my moderately autistic child, on a Sunday afternoon, in February. Bowling is out, because all the lanes are packed around here on weekends after ten, and we’ve already sat through forty-one minutes of the latest Pixar creation, which means we’re now on our way to the one option left to us, which is home.
Crap. It’s only 2:15. Only five more hours to go.
It’s not that I don’t enjoy spending time with my eldest son, because I do. Even though he doesn’t talk (allowing Mommy some actual “quiet time” in the car, which on some days is a real bonus), we always manage to communicate our feelings to one another, are successfully reciprocal in our attempts to convey our needs. One of my (many) profound fears when Justin was initially diagnosed was that I’d never comprehend his desires, would remain unable to fulfill his requests. To date, for which I am eternally grateful, understanding his thought processes has not been an issue.
We just get each other.
But as much as I enjoy this time with him, value his hugs of delight when I tell him to go get his sneakers because we’re leaving the house, appreciate his exuberant kiss on my forehead as we make one last trip to the potty, it’s simply not enough. I want to have somewhere wonderful to take him as we cruise the abandoned streets of this now-slumbering beach town, would like to have an alternative to what awaits us at our house. On this frigid afternoon, with the sun slanting speckled stripes through the dirty windshield of my car, I’d prefer more variety at my fingertips than the computer games he’s pretty much memorized, and the DVDs we’ve all viewed a thousand times together. Instead, I’d like to offer him a really cool locale.
I’d like to transport him to my version of Disney.
“KimIsney”, as I’d prefer to trademark it, is a fantasy I’ve concocted during our many hours in the car together, particularly on weekends as I schlep him back and forth to his riding lessons. In my daydreams as we drive I am the beneficiary of great largesse from our state’s lottery system (to date I’ve won $500, so I’m not holding my breath), and subsequently find myself the happy recipient of a staggering sum of money. This grand prize of course enables me to put one child through college and med school (certainly a four-year-old can already discern his career path), provides the other with a safe place to reside, and affords me access to that amazing farm I’ve created in my mind. Jeff and I are able to pay off our oft-refinanced mortgage before we’re eighty, and I am able to better satisfy my clothing/restaurant/travel fetishes. We then treat our families and friends to “frivolous stuff”, and happily donate to our favorite charities and organizations (don’t worry POAC, you made the list).
And of course, there’s just gobs of money left over for fun.
In my mind’s eye, “KimIsney” encompasses as much land as both Kennedy compounds combined, and is about as well-protected. Within its interior is a snack-bar that not only distributes healthy snacks, which our picky eaters will actually consume, but serves gluten-free casein-free products for those children on the “autism diet” as well (notice I address the food issue first). There are game rooms where unlimited and repetitive play is not only allowed but considered the norm, some with the accoutrement of loud sounds and flashing lights, and several more restrained in deference to children with sensory requirements. An Olympic-sized pool provides lessons to those on the spectrum as yet unable to swim, with a one hundred per cent success rate upon completion.
Hey, it’s my fantasy. Indulge me.
Of course there are in residence two movie theaters, one “typical”, and one reminiscent of AMC’s autism showing (light on the previews, heavy on accepting all legal behaviors). Indoor rides are plentiful, both those with a gentle sway, and ones that accommodate my son’s need to torture his mother’s severely diminished equilibrium. Just for fun we’ll throw in a stable, where Justin can both practice the equestrian grooming arts, and trot his little heart out.
And the best part is, it’s so well-staffed, nobody ever has to wait for anything.
In my opinion, “KimIsney” would not be complete unless there was an accompanying parent component, and since it’s so fabulously staffed with Board Certified Behavior Analysts just gunning to donate some of their abundant free time, parents should have the opportunity to relax. An inviting wing of the compound will include a spa, light shopping (come on, I’m trying to throw in a bit of realism here), and of course a “tini” bar for those who come with a designated driver. Moms and Dads of children on the spectrum will have the opportunity to actually RELAX on a weekend, knowing their kids are safe within the sanctuary of the building, and remain in competent, well-trained hands.
There’s no way I’m donating this structure to the world unless my people can let loose a bit.
I’m just beginning to envision what stores I’ll have in residence when my dreams are abruptly interrupted by a smudge on our selected CD, a blip that forces me to change our music selection so the words “only you” are not forever emblazoned in my psyche. For once Justin is not annoyed at the derailment of his choice, and I quickly “throw the book” at him, and wait patiently as he thumbs through plastic receptacles for our future tunes. I half consider a brief stop at WaWa for the latest lottery pick, but since my chances of a meltdown from Justin when I prevent him from consuming every carb in sight are much greater than landing the motherload, I resist the temptation. For the occupants of this car, on this mid-afternoon, it appears there is no place like home.
And who knows, if I keep playing those numbers from Lost, maybe one day we’ll all win too.
January 18, 2011
It’s Martin Luther King Day, day seven of what I’m considering to be “Holiday Vacation Part Two” (two half days, one snow day, a three-day weekend and a RAIN delay, are these kids EVER in school?), and once again Justin and I have opted to spend an hour at our local arcade. We have run out of things to do, as there are only so many times one can go to the mall, go bowling, or watch a half hour of the latest Disney movie. I like coming here because this is one place where Justin actually takes his time, carefully considering specific machines in which to put his quarters in, making the excursion last long enough that it seems worth it. At least this outing is relatively cheap, and will culminate with chocolate marshmallow fudge, a treat Justin’s mama probably enjoys more than he does.
I can tell he’s nearing the end of his stash, because I can hear his treasured silver obelisks clanking together plaintively at the bottom of his plastic bucket. He becomes more reckless as he runs out of loot, sometimes sliding a quarter into a slot and running off before I can even rescue his tickets. I keep a tight rein on him, particularly in places like this, where the background noise would overwhelm my calling him (assuming he’d listen), and the allure of spinning objects and flashing lights makes him more prone to darting away. I watch as he does his own version of a drive-by on a game I never really liked anyway, then track him as he darts off around the corner to play poker (yes, it’s fake, I haven’t smuggled him into Atlantic City, I’m not THAT desperate for something to do).
I round the bend just in time to see Justin staring at a large man in confusion, coin still in hand, clearly preventing this individual from choosing “stand” or “deal” as he blocks his access to what appears to be a royal flush. The gentleman in question is obviously distressed by my son’s attempt to usurp his machine, leans into him and yells “YOU MADE A MISTAKE YOUNG MAN! YOU WERE WRONG!”, and in the moment after my heart unclenches I am able to assess the situation, and realize Justin’s not in any imminent danger. The man’s elderly father rises quickly from his seat at his own game of chance and says “It’s okay, he has autism, it’s okay” with a mildly desperate air, and I gently pull Justin back a bit as the autistic man in question repeats his mantra, loudly, several times. I smile back at the father and say “it’s fine, my son is autistic too”, and I see the relief wash over his face at my declaration. There will be no rantings about rudeness or scaring little children. It is quite clear that I “get it”. Once again, as I seem to do so often, I have run into one of Justin’s peeps.
We conduct the five-second-information-exchange as I prepare to move on, Justin both anxious to dispense with the rest of his quarters, and seemingly eager to put some distance between him and the man still yelling at him with, in his mind I’m certain, a justified and righteous indignation. Justin pulls my arm so hard I know Pilates is out of the question for a few days, and we reluctantly say goodbye to one another, connection aborted. I’ve run into a number of autistic kids, adults, and their families here, particularly in summer when the rides and boardwalk games are open in full force. For the most part I’ve bonded with the parents with a moment of eye contact and a nod (since we’re usually clutching our children with at least one hand this constitutes our version of a handshake), and since there’s no time to swap stories, we move on. It seems to happen more often than it should, considering technically autism is only in evidence in about 1% of the population (my husband is convinced I am some kind of magnet for it). It’s nice to have that moment, even fleeting, to feel that no matter what is happening that day, a complete stranger has at least somewhat walked in your shoes.
And believe me, they are not Jimmy Choos.
I often think how lonely it must be for the families with “orphan diseases”, with perhaps no connection to each other ever unless through the internet. Those of us embarked on the autism journey have become the Cinderella of disabilities (after the prince saves her from servitude, of course), and we’re fortunate to be able to immerse ourselves in such a wide-spread blanket of resources, information, and support. It seems everywhere I turn there’s a bumper sticker, a ribbon, or a story-line either beautifully or horribly executed on a prime-time television show. Through writing, speaking, legislation, and advocacy, references to autism seem to be everywhere I look, in every corner I turn.
We enter the sweet shop and begin to wrap up our revered January holiday, one dedicated to a man who simply embodied and helped define advocacy. I restrain Justin from making off with two pounds of fudge, reminding him once again, as with so many issues of greater import in his life, that he has to wait. In my mind I thank those parents, professionals and caregivers over the last half century who in their own passionate way have also redefined advocacy, by refusing to remain silent about injustices; by pushing for educational and federal reforms well before it was popular to do so; by adamantly and repeatedly denying anyone’s belief that our children are worth any less than ones without a label.
And for the zillionth time, again, I say thank you.
June 9, 2010
My oldest son is now seven. He has never spoken a completely intelligible word.
There have been approximations, attempts at articulation that his father, mother, speech therapists, and sometimes his little brother have understood. “Mmm” for mama, “heb” for help, “ob” for open have all graced our presence, particularly in the last six months. His apraxia, the disconnect between his brain and the muscles required for speech, is strong with him. But for the first time in his life I am watching him strain for vocalizations, feel his fingers on my mouth and his eyes on my face as he struggles to imitate on demand, but never to initiate on his own. It is both thrilling and heartbreaking to see him try, to comprehend that he actually wants to talk now, but perhaps will never be able to coerce the sounds he makes into the cohesive whole of an entire word. I imagine he is frustrated by this inability to converse. I am not even certain of that.
Justin was diagnosed with pervasive developmental disorder at the tender age of seventeen months, which was particularly early back in 2004. His father, grandmother, therapists and I quickly immersed him in sign language in order to offer him a way to get his needs met without a tantrum, and to afford him the opportunity to more fully connect with the world. We utilized this approach for the better part of a year, contriving hundreds of trials daily in which we cajoled him into asking for a preferred toy, food item, or book to be read. Sign language was his chosen methodology of communication for well over a year, but despite his obvious intelligence, after fifteen months he had really only mastered half a dozen signs.
When we moved to New Jersey we were fortunate enough to receive the services of the Douglass Developmental Disabilities Center, and the excellent practitioners of my newly formed “team Justin” quickly indicated that sign wasn’t working for my son. They believed we should try PECS, a method of language using pictures that is far more visual in its interpretation, and without the prerequisite of good motor imitation skills integral for success in sign. I initially rejected the suggestion, because studies at the time had indicated that more children who signed progressed into vocal speech than children who employed other methodologies of communication. I resisted heartily, and almost made a terrible mistake because I forgot to utilize one of my strengths- to look at the big picture through the lens of an educator, not a mother.
For years in the classroom my co-workers and I had encouraged different modalities of learning, whether the child came with an IEP or a 504 plan, or just required a diverse way in which to acquire knowledge. It was not unusual for teachers at my school to encourage a student to memorize information for a test in the form of a song, to permit them to walk around the classroom to facilitate knowledge acquisition, or even to allow them to respond orally to a quiz if the written word was too daunting to them. We weren’t heroes. It was just part of our job.
I forgot this big picture approach with Justin for a time, because I was too emotionally invested in what I wanted for him, which was the ability to form the spoken word, to convey thoughts, desires, and initiate conversation. I almost forgot to take into account his strengths, which were technology and visual acuity, and acknowledge his weaknesses, imitation and gross motor coordination, both prerequisites for sign language. I also almost forgot that just because I want him to talk, doesn’t mean he will be able to do so. I can provide every opportunity for him, entrench him in multiple chances daily for understandable utterances, but in the end, whether or not he speaks is up to his ability and his motivation, as are so many other skills I’d like him to attain. I forgot this cardinal rule of teaching, and almost squandered the opportunity for even the most rudimentary communication skills for my son.
Justin soon mastered the PECS program and has since moved on to a more complicated augmentative device, the Springboard, which he uses in conjunction with attempted vocalizations both to request desired items, and to respond in academic situations. He is starting to type simple words on the computer now, employing a simpler version of the “hunt and peck” technique my husband still utilizes to this day. Justin has a typing repertoire of almost twenty words now, with new ones in acquisition daily. It is exciting to watch, and thrilling to witness his pride when the printer spits out his accomplishments so that he has tangible contact with his words.
I temper this success however, as I do his some of his other accomplishments, because I must remind myself that language and communication are two different entities, and the former does not necessarily blossom into actual conversation. It took a long time for me to understand that just because my autistic child was bright and might someday have language, he might not have communication. There are a number of children on the spectrum who are pros at scripted monologues, veritable geniuses at enumerating the myriad characters of Disneyworld, the Island of Sodor, or the Wiggles. They have vocabulary, excellent articulation, perfect diction. They speak. They are not communicating in any utilitarian fashion.
I remind myself of this as I watch him struggle, view his attempts to place his tongue in the correct position for a coveted consonant, or elongate his lips for an elusive vowel. I encourage myself to think “out of the box” about language in general, because this particular child may just not need to connect with people the way that his mother does. His rudimentary successes may lead to more meaningful dialogue one day, or they may not.
What matters most is that he does get his needs met, and no longer feels it necessary to cry, pinch, or stomp his requirements to get them realized. He connects. He is happy. And while I know I will always wish for the trappings of conventional speech, even the mere desire of it from him, perhaps in the end we convey more to one another in our increasingly elongated eye contact than we ever would have with the spoken word.
And I can live with that.