April 25, 2012
No Fear of Flying
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: accessibility@phl.org
Email contact for Autism Inclusion Resources (Wendy Ross) wendyrossmd@gmail.com
Email contact for TSA(Technical Services Representative) at PIA (Lisa Bailey) lisa.bailey@phl.org
March 21, 2012
Let’s Have a Chat
Justin’s school bus grinds to a halt, and as I approach the stairs that will lead him back to my care I hear his low-grade “eeee”, which can either signal happiness, or distress. He lumbers down the stairs and brushes past me, ignoring my query of “Hi Justin, how was your day?”, and immediately runs to the passenger side of my car to see if his “we’re going out” bag is inside. Since we’ll be staying home today it’s not, a situation which evokes in him another torrent of “eeee” sounds, quite vehement in nature.
It’s now apparent to me that the first round of vowel sounds I heard initially were emanating from a very irritated boy.
I thank his lovely bus driver and follow Justin to our front door, which he has unceremoniously flung wide open. I hear him before I see him, my almost-nine-year-old who is sobbing his heart out on my living room couch. I am grateful that Zach is upstairs playing in his room, which buys me some time to try and figure out what my non-vocal child is trying to communicate.
Making my way over to the sofa I trip on his backpack, my visual cue to release his iPad from its confines in his new Spiderman carry-case. My fingers quickly find his communicative device and activate it, in the hopes I can cajole out of him what he wants. As I walk over to my son, iPad in hand, I recall a conversation I’d had with his teacher in the past week. She had shared an anecdote about Justin which gave me some hope that my child might one day attempt more complicated conversations than simply asking for juice, or telling his aide that two plus three equals five.
It seems that not too long ago the company that makes his coveted macaroni-and-cheese lunches saw fit to change their recipe, rendering their creation far creamier than my son would prefer. Although they changed the label slightly to indicate its new “creamy nature”, nobody noticed the difference. On this particular day Justin’s teacher served him his lunch expecting his usual reaction of unbridled enthusiasm (my boy, like his mom, loves his carbs), but Justin wanted nothing to do with his pasta.
As soon as he saw his meal minus lid he pushed it away, making his staple sounds of irritation, clearly unhappy with his designated meal. His lovely teacher of course was confused, as he’d consumed this concoction eagerly for months, and went to retrieve his iPad.
She encouraged him to “just try a bite”.
His response was, “garbage”.
My son’s teacher is not one to give up so quickly, so she tried again.
This time my son’s answer was, “trash”.
Knowing I hadn’t sent in his “back-up lunch” of peanut butter and jelly that day, she gave it one more shot, reminding him in no uncertain terms that he usually loves this meal. She shared with me that he then looked her in the eye, pushed the offending container even further away, and pushed the button for “stop it”. Twice.
My eldest child had just simultaneously disrespected his teacher and held his first conversation with her. Both of us had never been so proud.
I snap back to reality as the corner of a comforter smacks me in the face, and I reach over and free Justin’s own unhappy face, offering him what I like to call “his words in a rectangle”. I admit I don’t have a great deal of hope that this will solve anything, because although he uses the device often at school, he’s far more apt to push it away at home than employ it to get his needs met. Still, I have to try, and hope for a single mand (request) of a wish I can easily fulfill.
I wish it worked that way for my needs too.
I hand him the device, and he surprises me by not shoving it away. Instead he sits up and throws off the now offending blanket. My son presses the “I want” button, scans through a few pages at lightening speed, and presses the word “toast”. He then hits the top bar, which sings out in its slightly robotic voice “I want toast”, and stares at me. To date, this typical single request has been the entire extent of our “verbal communications”.
But today is different. Today I’m incredulous that this boy is longing for a piece of meticulously buttered whole wheat bread, particularly because the slice I offered him this morning ended up in the garbage can. I look at my son and say “Really Justin, you want toast?”, and without batting an eye he leans in towards me a bit and hits a button that says a resounding “yes!”. Then he throws his cover to the ground, stomps off to the kitchen, and takes his place at the table. He’s made things clear. It’s 4:00 in the afternoon, but my boy wants breakfast.
Considering this is the longest amount of dialogue we’ve ever had, you can damn well be certain those whole grains were quickly on the way.
I sat down next to him at the table and watched him consume his snack with gusto, all smiles now, actually giggling when I handed him a napkin. I ponder for a moment what it must be like to be approaching double digits, and not be able to summon the sounds to request a staple of the food pyramid. Pushing that thought away I smile, because he actually did get his needs met, just not in the traditional manner to which most of us are accustomed.
My boy got his toast. And his mom got to talk to him.
Our dialogue didn’t center around what he’d done in school that day. We didn’t even have a simple discussion about the weather. But it’s progress, pure and simple. It’s progress translated from school to home, which is even more important.
It was just a simple conversation between a boy and his mom.
It was hope.
February 29, 2012
Quiet Time
After a ten day stomach flu hiatus, I giddily place two happy kids on their respective busses, wave to them, and head back to the house. This was a particularly virulent strain of the winter virus, pretending to disappear at certain points, then once again rearing its ugly head when we least expected it. Jeff and I made bets as to which of us would get it first, but somehow we managed to dodge that bullet (no character in Macbeth had anything on us this week when it came to hand-washing and Purell).
I’ve accomplished absolutely nothing of a personal nature, but on the bright side, every linen in my house has been washed three times, and we’ve discovered the most fabulous rug cleaner EVER (it’s called Kids ‘N’ Pets, and it’s MAGIC). After one last wave to Justin on his yellow chariot I step over the threshold into our foyer, survey the land, and take a deep breath. It is so very, very, quiet.
How I love the sound of freedom.
I have never been very good with large swaths of unfettered time spent hanging out in my abode, so the last week-and-a-half has been fairly torturous for me. I’ve always liked taking the kids places, even insisted on it in the “dark days” when convincing Justin that leaving the house wouldn’t summon the Apocalypse. I was that crazy teacher who actually enjoyed field trips, and loved to travel in my personal time when finances would permit. This last chunk of time, spent mostly following Justin from floor to floor making sure we wouldn’t witness the return of his last meal, was wearing for me.
I started a half-dozen projects I never finished because Justin would leave the room and I’d follow, which meant my visual cue was gone, and I’d forget why I went there in the first place. Other than keeping the two kids alive (which clearly is important), I didn’t feel like I had a purpose. That “down time” is when I start contemplating my kids’ futures, and mine.
And some of those visual images are not so pretty.
Recently I read an article on NorthJersey.com regarding adults with autism and their care, and I was reminded that no matter how difficult some of our days here seem to us, at least both of my children have a safe and stimulating place to go most days of the week. The daily reality for families in New Jersey with adult children on the spectrum is not nearly so bright. My native state is currently experiencing a serious gap between the amount of adult services available, and the number of adults with autism looking to join these programs. One of the largest issues that stymies would-be providers is, of course, funding.
Somehow, everything always comes down to money.
According to the author of the article, Mr. Harvey Lipman, it seems that although the Division of Developmental Disabilities (DDD) does provide some funding for each individual, the truth is the cost of caring for that person far exceeds the monies provided. Since non-profits are only allowed to make up the difference through charitable fund-raising, a group’s ability to create new programs to meet the burgeoning need for them is often stopped in its tracks due to lack of funds.
In a further twist that makes providing opportunities more difficult, the DDD will no longer fund the agencies directly to initiate programs. Instead, funds will be placed directly in the hands of the families themselves. While technically this enables parents to pick and choose among existing programs, the reality is that the current programs may not meet their adult child’s needs.
If that is the case, families are then put in the position of signing up for a program that does not yet exist, hoping that other families will do the same, and then waiting for that program to come to fruition. In some cases, this has meant a year or more where a parent is required to be home with their adult child, day in and day out, with no guarantee that the situation will improve any time soon.
For any adult with autism (or their parent) who wants to get out of the house as much as we do here, this situation is untenable.
There are many divisions remaining within the autism community, although I see the gaps between different factions have lessened over the years, which is encouraging. My kids remain in single digits, but I’m beginning to watch my friends with teen-agers start to contemplate some really difficult decisions, which puts them on one side of the divide, while I remain on the other.
Over the past few years I’ve listened as friends and acquaintances have thrown out these queries to the world: Where will my child live? Will he have anything to do all day other than stream videos on his iPad? Will we have adequate child-care for my adult daughter, and one day be able to attend our parents’ funerals? Will I spend the rest of my life as a permanent caretaker?
Contemplating these issues definitely puts having two kids with the stomach flu into perspective.
Everyone keeps talking about the tsunami, the tidal wave that’s burgeoning now and will continue over the next decade, where my eldest son will one day join the fray. To me however, the concept of a tsunami conjures up images of great noise and chaos, a very public display of uncontrollable destruction wreaked. I think the reality for many families will be no less damaging, but perhaps a lot quieter.
Careers will be relinquished far earlier than desirable so that parents can babysit their adult child. Events will be missed due to lack of child-care, perhaps a wedding here or there, or a seminal event like taking a son or daughter to college for the first time. Worst of all, families may watch their offspring’s skills erode as boredom and malaise set in, and might witness the undesirable return of aggressive or self-injurious tendencies. Perhaps within the walls of families lacking viable options of productive engagement for their adult children, chaos will reign as well.
Or perhaps, it will just be very, very quiet, without the freedom.
To read the entire article, please see the URL below:
February 5, 2012
My Birthday Boy
Dear Zachary,
This morning, as I sat with your half-slumbering five-year-old body in our glider chair, I had to smile, because I know my days of waking you up this way are numbered. It won’t be that many years before the mere thought of needing a hug from me to cajole you into consciousness might make you retch slightly (five years, four years, perhaps one?), so I know I’d better enjoy this now. I wish I had pictures of these pretty little moments (maybe when Mommy completely learns how to use her Smart phone, I will), the ones that make that forty-pound weight gain while gestating you completely worthwhile.
You remember the moments I’m talking about, right? Like spontaneously telling me I’m your best friend (Justin was so five minutes ago). Announcing to fifty people at your pajama book fair that “This is my Mom!”, and expecting all of them to be as dazzled as you were. Begging me to “be with you” instead of Justin, which means rejecting the far-more-fun twenty-one year old sitter so you can spend the afternoon with me. You know, those brief moments in time where hanging out with your mother was actually cool.
In my mind, I envision future Zachary shuddering, complete with formidable eye roll.
I am aware, because I saw this happen all too often with my students and their parents during my teaching career, that in the near future I will know less than nothing. Not too long from now our days of snuggling under the “picnic blanket”, me making up stories in which you are invariably the hero, you changing the endings because you get bored, will soon cease. Down the road, upon learning I will be going out for the evening I will barely earn your guttural goodbye, rather than the teary scenario that usually ensues (the one giving that funeral scene in “Steel Magnolias” a run for its money).
In a few years, I will merely exist to serve.
You will prefer to spend time with your friends, or alone, or anyplace in the house where your father and I are not. I am certain you will think we are too old to understand anything (and perhaps, given my current memory lapses, you’ll be justified in that thought). You will not take kindly to my suggestions of how much you once liked us, will regard with great disdain any photos I may have figured out how to take, or anecdotes I’ll use to remind you of your early childhood. After this rejection I will retreat with my remembrance arsenal and eat more chocolate (and drink more wine) than usual, securing my mementos away to be brought out as evidence another time.
Perhaps, for fun, that time will coincide with the arrival of your prom date.
No, my days as “Mommy-Goddess” are limited, which is a new phenomenon for me, because I’m pretty certain I’ll still be “Justin’s girl” when I’m eighty. It’s a bittersweet knowing, tinged with regret that this time will recede so quickly, and relief that eventually, your days of mommy- worship will disappear. Your brother’s life will have a different trajectory than your own, one which I will try my damndest to infuse with as much happiness as possible. You, my sweet boy, will have choices that your brother will not.
I hope you will occasionally make the wrong ones (as long as they don’t involve jail time, we’re good). I wish that you will struggle sometimes, because it toughens the soul, which is a good thing, because sometimes life is a bitch. And as I inevitably watch you wield your charms on your love interests, please remember to treat those girls with respect, because if you don’t, you are so grounded.
Forever.
You’re starting kindergarten this year, and I’m told the time from now to graduation feels like a blink of an eye more often than it does an eternity, so for now, in this moment, I’ll gather you to me. I’ll whisper in your ear to remember to love yourself, and I mean all of yourself, because that’s the only way you’ll ever truly love another. I’ll quietly remind you that a great GPA is nice, but you’ll make me most proud if you’re known as a boy who’s kind to others. I’ll sweetly suggest that when you grow up you should remember your mother, the one who wiped your butt, disciplined you even when she didn’t feel like it, and nourished you not only with mediocre cooking, but with all the love in her considerable soul.
In a few minutes you’ll invariably start to whine that you’re tired and I’m mean for waking you, and the magic moment will be pierced through with our daily reality. I will beg you to get dressed as you flop yourself on the floor, and eventually, as I bribe you with reminders of your friends waiting for you at school, you will comply. I’ll feel that soporific sweetness start to slip away, and as we busy ourselves with our daily routine, only one thought will remain.
Happy 5th Birthday, my big and little boy. I love you.
January 22, 2012
And the Answer is…
“Mom, why does Justin say “eeee”? Zach asks me as he colors a wooden snowflake bright red, a hue he says he chose because it’s “cheerful”. “I don’t know honey, that’s just the way your brother talks because of his autism”, I respond. I help him uncap a green marker to make the snowflake more “Christmasy”, and I think about how much I’d truly like to know the answer to that particular query. It’s been seven years, thousands of hours of speech therapy, and an equal amount of money spent on trying to elicit some consonants out of my eldest son. I’ve been a (mostly) good girl all of these years, and truly, I’m ready for someone to end the mystery for me. I look down at Zach and realize he’s ceased his artistic attempts and is looking right at me, as if I’d merely forgotten the real answer, and my response to him is imminent.
He’s turning five. The questions are starting to come.
It’s funny. So far, we’ve had elaborate discussions on what constitutes a soul, what transpires in heaven (Mommy, Daddy, and Justin are there, friendly dinosaurs are residents, and there are a lot of snacks). He’s asked me why the sky is blue (the answer for which I had to look up on the internet and now no longer recall), but he hasn’t peppered me with many questions about autism. Zach does know that it’s hard for some people with autism to talk and to make friends. He also understands that autism is the reason his big brother plays the same scene in a movie a trillion times on his DVD player, and that Zach needs to see films on our “big screen” if he wants to know the ending of anything. So far, except for loudly declaring that a few kids at POAC events have autism, it hasn’t been a huge topic of discussion.
I’m pretty sure however, that it will be soon.
Zach’s starting to really notice Justin’s behavior, how he’ll frequently seek affection from his parents (which immediately prompts Zach to do the same, no imitation issues here), but remains mostly solitary in his activities, despite our numerous attempts. He’s asked if Justin could play Monopoly with us, and seemed mildly disappointed when his brother made it clear that plastic cars and thimbles hold no interest for him. Our bowling activities have placated him a bit, afforded Zach the opportunity to cheer his brother on and hug him when he’s victorious, allowed him to feel connected to his sibling. On the rare occasion when Jeff and I have been able to get them to run around the house, Zach has thrilled to the chase, and solicited Justin’s help in conspiring against his parents. Recently there have been more opportunities for connection, for fairly “typical” sibling interaction in our house. Zach has loved them all.
But I’ve noticed that now his questions are becoming far more difficult to answer, and his requests are of a nature I can’t reasonably fulfill. Last week, it was why Justin doesn’t have playdates with his friends from school, and why he wouldn’t sing a song with him. Yesterday ended with a half-hour long discussion as to why Justin can’t sleep in his little brother’s room, with my explanation about completely different schedules (and Mommy losing her mind if they woke each other up) clearly constituting an inadequate response. He’s beginning to want more from their relationship, and he’s starting to wonder why he’s not getting it.
I personally am envisioning a great deal more chocolate in my immediate future.
So far it’s been fairly calm seas between the two of them, with the occasional appearance of mild skirmishes over toys the only time sibling rivalry has marred the surface of their relationship. Every day, Zach still asks how long it will be before Justin gets home from school. He continues his unsolicited acts of generosity toward his elder brother, leaving him books and toys at his place at the table (ones he no longer has interest in of course). According to Zach, Justin is still his best friend.
And I just hope, as we transition into the next phase of Zach’s childhood where questions and requests will dominate our days, that this brotherly love will remain.
January 11, 2012
Family Ties
At first Justin brushes by my little brother, barely gives him a glance as he makes his way across the kitchen to the family room, intent on a destination known only to him. I’d hoped for more recognition on Justin’s part, although my sole sibling only makes it up for a visit about once or twice a year. Since I’ve been too afraid to try a plane ride with my eldest, they really don’t know each other very well. Still, they had forged a true connection this past summer, Justin standing at his uncle’s side, occasionally looking at him to share the joy of a particularly engaging scene on his DVD player. I’d thought he’d at least be happy to see him, would show some sign of pleasure at his presence in our home.
And just then, my oldest child stops, pivots, runs back to my brother, puts his hands on either side of his face, and looks at him with the most intense gaze I’ve ever seen.
I take a few steps toward them, careful not to disturb their time together. Justin smiles up at his newly discovered relative, then looks at me. Again, he looks at my brother, then regards my face. He jumps up and down with joy, emits his standard “eee” for excitement, then disengages from my brother’s embrace. The moment is over. But I know in my mother’s soul that I’ve just witnessed a connection made, a cognitive leap in my boy. He may not comprehend exactly who this tall man is to him. He has however recognized the similarities in our faces, the features we share that make our blood tie unmistakable. On some level, I am certain Justin gets that we “go together”.
And he also gets that this is one more person in his life who loves him.
I can’t prove any of this of course. If I directed him to his iPad he wouldn’t type out “this is mommy’s brother”, or show his comprehension in any other form. I know he understands this man is family just the same. And while I’m thrilled that he’s made this connection, it just makes me wonder how much else he knows that he’s unable to share. This awareness of the gap between what he understands and my ability to discern that understanding remains a sore spot for me, although I continue to hope that chasm will continue to close. He’s made such progress with his new technological device in school, and it’s finally begun to spill over a bit into our home. I’m hoping that his need to connect through the written word will increase over time. All we can do is give him opportunities, and wait.
I put those thoughts aside however, because at the moment we’re engaged in a rare opportunity in and of itself- my mother, my brother, my husband and my children all in the same space, willing and able to interact with one another. It’s about as rare an occasion as a solar eclipse, or my going an entire day without consuming chocolate. I need to get back into this moment, to recognize its incalculable worth, and just enjoy.
And as I watch my oldest son return to his uncle for a second round of hugs, I do just that.
October 23, 2011
Warriors, Tigers, and Dragons
It seems we’ve come to a place in our society where moms require labels to distinguish what kind of parenting we practice. Several years ago I read an article describing how Jenny McCarthy aptly coined the phrase “warrior moms”, a term dedicated to those of us fiercely advocating and fighting for our children with autism. This past year in Time Magazine the zeitgeist shifted to “tiger moms”, an appellation I grasp intellectually, but continue to reject solely on my belief that childhood should include choices, and at times actually be fun. Then last night, as I briefly skimmed through the daily Autism Speaks blog, I chanced upon a reference to a New York Times opinion piece called “Notes from a Dragon Mom”. Without reading the blurb I rolled my eyes and clicked on the link, ready to be regaled with yet another story of a superhuman mother which would surely leave me feeling vaguely guilty for all the things, despite my efforts, I somehow manage not to accomplish for my progeny.
Ten minutes and half a box of Kleenex later, I sent a silent plea to the universe to forgive me for that eye roll.
The piece, by author Emily Napp, describes in exquisite, precise prose how her eighteen-month-old son Ronan, a beautiful little boy with red hair kissed by fire, will not live to see his third birthday. I won’t give you the details here, because Ms. Napp does so brilliantly, with an elegant grace I cannot and should not attempt to reprise. I promise you however, this article is worth your time, and will perhaps alter your perspective on parenting irrevocably.
I know it did for me.
For years after both of my boys were deemed autistic, I was mostly immersed in the physicality of their diagnoses. My husband and I were completely caught up in dealing with sleepless nights, relentless rounds of diarrhea, eating aversions, and with my eldest, the feint and par of aggression. There wasn’t much time to consider the future, as the two of us at times were literally simply trying to make it through the hour. Quite frankly there was a safety to living in the moment, no matter how terrible it was. Having been a veteran educator myself I’d had access to several autistic students over the years, and had been privileged to know and follow their families over time. I had an extremely clear big picture view of what might transpire for my boys down the road, and the prospects were terrifying. I simply shelved those thoughts for the years immediately following what I like to call their “D Days”, and forced myself to focus on the now.
I believe making that shift saved my sanity.
There were times however, particularly during Justin’s pre-school years, that as our daily struggles lessoned, the weight of that possible future would insidiously slip its way back into my head, at times leaving me semi-paralyzed with fear. I realized ironically that as Justin’s challenging behavior lessoned, I would have to ramp up my own self-discipline, try to conquer my own fears, and stop living in my head. I’ve mentioned before in my blog that one of the most helpful tools I used to do so was Susan Senator’s book Making Peace with Autism. Her writing, despite our child’s moderate autism, afforded me both a blueprint for one day achieving a happy family, as well as a second important mental shift.
I clearly remember one fall morning in Barnes and Noble, snatching up this book from amongst a myriad of tomes that outlined the full recovery of the author’s child, and finding immediate comfort from the words within the cover. The solace came not from discovering a family who made every decision regarding their child’s care with consummate perfection. It came from reading about a family who learned to self-correct their errors, who made enough of the right choices despite their son’s severe autism to forge a path which would ultimately make possible what I consider the perfect endgame- a safe place to live, a social outlet, a job, and a happy life.
This remains my intended endgame for Justin as well.
Life continues to improve in our home, with my eldest making great strides in reading, communicating his needs, and finally being able to summon that peaceful child I knew existed, and worked so diligently to unearth, during all the dark years. Despite my second’s son’s identical diagnosis, Zachary’s life trajectory remains quite different than Justin’s, most likely including the more traditional fare of relationships, college, career, and independent living. Over time I’ve been able to reconcile the fact that Justin won’t have these options, mostly because he’s achieved the most important goal I’ve always had for both of my kids.
Both Justin and Zach love their lives.
As we’ve reached this point together as a family I’ve realized I won’t ever completely be at peace with the paths autism has altered for us, but the truth is I am completely at peace with that realization. There is one fear however that has lingered for me, the one that requires a serious “aha” moment, or one last emotional transition. I have yet to figure out how to deal with those decades I won’t be around to protect my boy, although if it were possible from beyond the grave, I surely would. Part of my problem is projection, or the very real fear of all that can go wrong when I’m gone.
Every year since Justin’s diagnosis I’ve come across a heartbreaking story of an adult with autism’s neglect, injury, or untimely death. These stories simply exacerbate my deepest fears, heighten the atmosphere of “what happened now”, in which my family dwelled for so long. The possibility of someone hurting the someday adult who will always remain my baby clouded the future, prevented me from seeing an alternative route. Yet the truth is, Justin may live safely for the forty years he’ll spend on earth without me. He may in fact acquire that job that suits him perfectly, enjoy authentic social opportunities, truly revel in his life. There’s every chance he may be just fine. The reality is, he’s lucky to have a future.
And last night, in devastating detail, Ms. Napp reminded me of that simple truth.
I admit, I feel somewhat guilty gleaning clarity from this piece, seeing how this author must surely dwell, despite the sweetness of living in the now, within the confines of constant, unremitting pain. Her words certainly have not completely eradicated my deepest worries concerning Justin’s existence post-parent, but they’ve given me a different way of contemplating the arc of his life. For that gift, I am eternally grateful.
I am confident I will never have the honor of meeting Ms. Napp to physically thank her for sharing her story. The most I can do is share the piece here. As the author states near the conclusion of the article, the truth for all of us raising the next generation is that “none of it is forever”. I thank Ms. Napp for altering my perspective. And I know, as I hug my boys who have already lived longer than her son probably ever will, I won’t forget this truth any time soon.
October 11, 2011
The Thin Red Line
Justin opens his mouth in a wordless “o” of half-terror, half-excitement, then plunges a body length toward the boardwalk, as usual enraptured by his favorite ride. I smile and enact my “usual”, which is to capture that moment of abject fright coupled with fun on film, because he’ll enjoy it later when I play these moments back for him on camera. The ride has just begun, so I allow myself the luxury of relaxing just a bit, knowing he’ll be engaged for several minutes, as the amusements at this particular boardwalk are actually worth the wait.
I take a step backwards and feel my sneaker crunch what can only be someone else’s toes, and I quickly turn to offer my apologies. Thankfully, my victim is also wearing sneakers rather than more traditional summer fare, and she simply smiles and says “Don’t worry about it.” I see her hesitate for a second which intrigues me, so I keep my torso turned in her direction, and she follows up with a second question. “Is that your boy on the end?” she asks. I say yes, and she responds with “mine’s on the other end”. I turn back to where my son is being flung around like a jack-hammer, and see a little boy with Down’s Syndrome four seats down from Justin, clearly as immersed in the excitement as my boy.
I consider anyone with a child who’s differently-abled to be part of my “tribe”, so I take a step back and strike up a conversation with her. I tell her her son is beautiful, and she kindly returns the compliment. With only a minute or two left in the ride we conduct a typical abbreviated dialogue- diagnosis, residence, how our school districts are providing for our kids, and sibling status. It turns out she has an older daughter who adores her son and is a big helper, and I share with her that I have a younger son who is also on the autism spectrum, but mildly so.
She looks at me, this woman with her own Herculean challenges, and says quietly, “Two? Wow. I have my hands full with just one. I don’t know how you do it”. I reply that wine and getting out of the house once in a while are my biggest helpers, and she laughs as we both watch the blurred row of seats begin its final descent. Justin can lift himself off now independently, so I say good-bye to my newfound friend, wish her luck, and grab my son’s hand before he’s en route to his next thrill-filled destination. It appears our subsequent adventure will be the tilt-o-whirl, which is wonderful for Justin, and not so good for his mommy. I am already regretting having eaten prior to coming here.
We successfully survive what I’ve lovingly come to call “the twirling cups of queasiness”, and Justin lets me know that he’s done for the day by yanking on my hand and striking out in the direction of his waiting stroller. He’s certain he’ll be the imminent recipient of a salty pretzel within minutes, so his grip is strong, and relentless. Within seconds we’re back at our staging area, the carousel, and he is soon sitting calmly in his own personal ride. We acquire our carbohydrates, his doughy, twisted bread and my staple of soft-serve, and then continue with our tradition, which includes a stroll down to the end of the boardwalk and back.
I love these walks, because along with rides in the car they seem to be one of the few moments in my life where I get time to truly process anything. I let my mind wander back to my conversation with my “tribe-member”, and her heart-felt query as to how I make it through the day. My comment involving the merits of alcohol and frequent bouts of “Mommy-time” was somewhat glib, but also true, particularly the latter remedy. We all need to take care of ourselves so we can take care of our kids, and for me, that includes time alone, even if it’s just running errands. Some of my best ideas have been born from those moments of sanity, where nobody is stretching out my shirt-sleeve with their wants. I admit, to me, it’s precious.
I also admit there are other reasons why I’m usually able to do more than just get through the day, although I’m grateful for that ability too. If I’d had more time, I’d have told this woman that my eldest son’s bravery when he attempts to talk continues to take my breath away. I’d explain to her that my youngest son’s compassion for his sibling’s struggles at communication makes my heart overflow with pride. I’d share with her that my sons’ collective courage in all of their endeavors is a tremendous inspiration to me, that their spirit makes me strive to do better for them, to parent them to the best of my capacity. I’d regale her with all of these examples, and they’d be true. There’s one other important reason I might leave out however, because you really need a visual for it, and it’s something Justin won’t produce on command.
I call it, lovingly, the thin red line.
The thin red line is his special smile, the one he saves for particularly spectacular days, the ones that exceed even his high exceedingly high expectations. Its appearance is rare, and therefore even more coveted. It is usually preceded by a mighty hug and kiss of thanks from my boy, includes perfect eye contact, and looks like this:
Those perfectly pursed lips signify a blessed absence of angst, a true sign that fun is interwoven indelibly throughout his days. That look on his face indicates that despite some limitations, he is thoroughly enjoying his childhood. It means that all those years we struggled, both independently and together, have ultimately resolved themselves into his predominantly peaceful, and happy, existence.
It is a smile of utter satisfaction with his life.
A slight smile graces my own lips as I ponder these truths, and for the millionth time, I thank the universe we’ve come to this point. I am well aware there are other parents who have worked just as hard as me and my husband, parents who have not been rewarded with similar results. My boys, and perhaps this boy in particular, continually make me want to do more for them, and do more for others as well. Justin’s contentment, that emotion we’ve worked so hard to elicit, will remain that catalyst that does far more than get me out of bed in the morning. It will be a continual reminder of how fortunate this family truly has become.
Lucky, in fact, to be graced with the thin red line.
August 25, 2011
Horsing Around
It’s 1:59 PM as I turn down the long drive to Justin’s horseback riding camp, and I’m sweating bullets because my son will be performing promptly at 2:00 whether I’m in attendance or not. I’m chastising myself profusely for succumbing to a “bargaining game” with my youngest before I left the house, a choice I made to engage in a ridiculous discussion as to why I had to leave him for the first time in hours, a decision which has subsequently almost made me late. I force myself to slow down as I enter horse country, remind myself that I am here after all, and that my inner compulsion to be ten minutes early to everything is my issue, and not necessary for Justin’s happiness at all. I find an empty spot next to my mother’s car, I watch her put away the phone she was about to use to find out where her usually prompt daughter could be, and exhale.
I decide to let go of “bad mommy” and enjoy the afternoon. This turns out to be a better choice than the one I made while trying to placate my other son.
Grandma and I turn and approach the barn, and I see Justin hanging over the gate, grinning ear-to-ear, ecstatic to see us both. My eldest carries a deep and abiding affection for his father, but he’s always loved his girls, and having us together in one place pretty much constitutes nirvana for him. Couple our presence with the fact he’s going to get to ride a horse again AND perform for us, and my son is pretty much on the moon at the moment, literally eager to get on with the show.
His “women” can’t wait either.
Last summer I wrote about his first foray into horseback riding camp, and I felt compelled to scroll back through my blog and get a sense of where we were then, and where we reside now. I recalled that we had just come off of several months of intermittent illnesses, which ramped up Justin’s OCD considerably. I myself was still battling what I like to call my “annual bronchitis dance”, which generally renders me just ill enough to be annoyed for eight to ten weeks, but remain (marginally) functional. If I’m being perfectly honest with myself, last June I wasn’t in the best of places emotionally from dealing both with Justin’s recurring ear infections, and from being at half-mast myself.
I recall that as I took my seat next to my mother on the unforgiving wooden bench to watch Justin and his horse enact their maneuvers, that I was anxious, and profoundly tired. I recall having to avoid his outstretched hand as he shuffled past me to his steed, because if we made contact he’d be straining to lead us both to the car to start our journey home. It’s a 90 minute round-trip twice a day to this farm, and the sheer logistics of getting my eldest here while figuring out what to do with my then three-year-old had just about combusted my already illness-addled brain.
In other words, come hell or high water, mommy was going to get to see a damn horse show.
In my now (relatively) clear brain I retrieved all of these details as we strode up to the entrance, but this time my son eagerly places his hand in within the circle of the outstretched fingers of the volunteer waiting to escort him to his ride. He straddles his equine friend with ease and begins to perform, the walking back and forth across the barn that now includes him navigating with the reins, as well as the subtle kick required to spur his horse into the trot he so adores. He appeared more in control this year, and his execution of the tasks at hand were slightly more demanding of him than last year’s tricks. I’m told his “seat” is improved, that he sits up straighter in the saddle, is more in harmony with the rhythm of his mount. All of these nuances, these signs of progress are wonderful, so worth the schlepping and the logistics to get him here.
But the real story is his smile.
A year ago he was compliant, happy to perform, and equally content to leave the premises at the conclusion. I had a few shots where I was rewarded with his pearly whites, but generally he was very serious, more sober in his demeanor as he paraded around this old wooden structure. It’s important to me to get a few photos where he demonstrates his joy at each event we take him to, not because they’re “prettier” depictions of him, but because at his core, his is a joyful soul. I’ll do just about anything to get those photos, have been known to evoke Elmo, sing “Twinkle Twinkle Little Star” in falsetto, and contort my body into ridiculous positions to evoke a slight smile, the latter decision being one I generally deeply regret later.
This summer, summoning Cirque de Soleil was not required.
Justin literally didn’t cease smiling the entire show, nor did he stop making eye contact with me or my mother, making certain we didn’t miss a single second. I have it all on video, as well as on our digital camera. I literally had to sift through the stills for this piece just to pick the best ones, and there were so many to choose from, it wasn’t easy. My boy loved every minute of his time to shine. At the end, when I asked him to stand next to the lovely teen-aged volunteer who’d been his virtual shadow all week, I didn’t have to prompt him, or ask twice. He simply sidled into her and draped one arm casually across her shoulders, and flashed that ecstatic grin which means the world to me.
Then he grabbed my hand, and gave me what I’ve come to call “the get me juice now woman” look.
Small steps. Progress. Joy in sharing a moment. It took us almost eight years to get to this place, and it’s been worth every minute of fear, effort, frustration, and sacrifice. My boy is really, truly, happy.
And that reality is really, truly, something.
August 11, 2011
Slumber Party
The phone rings, just as I’m trying to decide if I still care enough about the boys of Entourage to see the last season through. My husband fumbles for the remote and grumpily comments, “Who the hell would call us at 10:30 on a Friday night?”, and I just stare at him, because I know exactly who’s attempting to connect with us. I check out the caller ID just to be sure, and it is indeed my mom. I look up at Jeff and say “It’s Grandma”, and I can see for just a fleeting moment he’s forgotten that Justin’s at her house for the night, or at least, that had been the plan. I press “talk”, which is the last thing I want to do at the moment, and listen as my mother tells me my son has literally packed his bags, and clearly wants to leave. She assures me she’ll keep trying, but I know the jig is up. In a few minutes he’ll be yawning as grandma’s car hugs the coast, and he and his new Toy Story suitcase bought specifically for this occasion will make their way home together.
It would appear my son’s first sleepover in six years will end before Letterman.
I have to admit, my first reaction upon returning the receiver to its precarious perch on our coffee table is intense disappointment, infused with a smattering of guilt. Justin has made so much global progress over the last year-and-a-half that I truly thought this staple of childhood, or more accurately, this staple of my childhood, would be available to him now. Over the past year he has learned to sleep through the night (most of the time), and traded temper tantrums for acquiescence (again, most of the time). Due to maturity, and mostly his own desire, the world at large has finally seen the personality I always knew existed at his very core- a happy, joyful temperament. I truly thought he was ready for this. His father thought he was ready for this. His grandma and her partner went to great lengths to ensure this night would work.
But unfortunately nature called, and my son answered. Apparently, upon deeper examination, even a bed with his own spaceship sleeping bag and extra-soft pillow on it is still not his own bed.
For a few moments I am mired in regret, wondering if we missed the window by having him home every night since he was two. Our collective decision wasn’t from a lack of desire to see him slumber elsewhere, trust me. During what I lovingly refer to as the “coma years”, I would have delighted in shipping him off for an evening (or three), but we just couldn’t inflict that particular torture on anyone, and quite frankly, there weren’t a great many offers either. His inability to make it through the night, coupled with his little brother’s regression and subsequent plunge into his own heavy-duty therapy years, forced us to put vacations, or even nights at grandma’s, somewhat permanently on the back burner. We were in survival mode. Pleasure seemed an elusive, unreachable link to our past.
As quickly as these negative thoughts enter my consciousness I banish them back to the dark recesses of my mind, where other thoughts of similar nature reside but don’t see the light of day nearly as often as they used to. I remind myself that our family has done the best we could , given both the circumstances, and the resources, available to us at the time. I tell myself that one aborted sleepover does not mean the next decade (or decades) will require my son to snore solely in his own bedroom. Our impending trips to Hershey Park and Disney are not necessarily defunct, just because my son couldn’t make it in another locale until midnight. I chastise myself to chill out, as I sometimes need to do, because life here is much more manageable, and the future is still ripe with possibility.
I smile, because for years I didn’t feel I had much of a choice in how I perceived the daily events of our life together. Now, thankfully, I feel I do.
What seems like hours later, but in reality is only the length of another episode of our selected HBO drama, I hear the soft slam of a car door on our otherwise silent street. I listen to feet padding quietly up to our door, and Jeff opens it, allowing Justin reentrance to his own domain. I slide from the couch to my knees on soft, yielding carpet, and my boy sees me, eyelids heavy with fatigue, the last remnants of a yawn twisting his face. Justin drops his pillow, and shuffles my way. He drapes his arms over my shoulder, relaxes his lithe form, and literally slumps into my body. I gently ease him down to the floor so we can return him to his discarded pajamas, and my husband bears the weight of him back to his own room. I quickly hug my mom, and head upstairs with sleeping paraphernalia in tow. I make it just in time to see his sleepy but brilliant smile flash briefly, his eyes watching me gleefully as I unfurl his colorful comfort onto his familiar mattress. He snuggles in, and pushes my hand away as I gift him the quickest of kisses. I carefully make my way out of darkness, and into the light.
And it occurs to me, even with these small, still frequent setbacks, this family is finally, and I hope firmly, entrenched in the light.
