December 31, 2010
New Year’s Evolution
We made a gingerbread house today, my youngest and me. Not the fancy version mind you, with its cinnamon-spiced cookie walls and sticky-sweet icing for snow, but the felt version, as I have yet to figure out how to create an edible construct that’s gluten and casein-free. The form doesn’t seem to matter to Zach however, as he seems content just to forge this linen building with craft glue and discretely adhered masking tape. He is simply happy to sit at our designated table with his mommy, and design his own.
I am thrilled to be here with him as well, as this is the first “Christmas house” we have built together, and the added bonus is it conjures up the requisite images of festive architecture from my childhood past, pleasant in their remembrance. As I sit with him and attempt to gain better purchase on the tiny chair I am well aware of the enormity of this gift, the ability to carry on a tradition with my child, one who is eager and willing to perform it with me, one who miraculously was able to request its creation.
It’s the last month of the year, and as always, just like the commencement of the school year, it’s a time of reflection for me. I consider where we’ve been and where we now reside as I help Zachary fabricate his house, watch him carefully separate out the pieces of his one-dimensional art form with such care, and manipulate the tiny forms with such ease. He desires to begin at the top of his home and work his way down, and as I’ve never been one to insist on coloring in the lines we alter our blueprint a little, an act we’ve committed time and time again in our tiny family of four.
He begins with the roof, which he tells me firmly we require because “it will keep everyone warm and cozy”. As I contemplate how he’s incorporated the latter adjective into his lexicon of words I am simultaneously reminded of the outpouring of care and compassion we’ve received over the years, the small and grand acts of largesse, and the kind words both spoken and written to encourage our clan in times of conflict. These acts have blanketed us, permitted this family to retain the heat, the fire necessary to forge through the most searingly difficult times. We could not have built our own home without them.
Once the roof is safely adhered Zach moves onto the windows, neatly punching through the cloth panes of glass to afford us a glimpse of the other side, allowing us to widen our view. I recall how watching my youngest son’s language expand, and my oldest son’s increasing desire for social interaction, have both enabled me to envision a different world for my children this year. We now inhabit a home in which the future may hold more than just fleeting glimpses of a “normal” childhood, one in which both of them may actually one day possess a true friend. I am so grateful for that expanded vista, for the possibilities inherent in those translucent frames.
Finally, Zach addresses the foundation, shoring up the edges with his tiny fingers immersed in solvent, asking me if his careful ministrations are correct. I smile and tell him his house is lovely, as in its own way, is our own. Our foundation has also been conceived in patience, moored in consistency, cemented in love. It’s not seamless, and there will always be cracks. But it will continue to stand.
It will always stand.
And my wish for all of you in every year to come, is that your own house, no matter how it’s constructed or what form it takes, will continue to stand, wind and weather-battered, as magnificently strong as ours.
I’d like to take just a quick moment to extend my immense gratitude to all of my readers this year. I am so appreciative of the praise as well as the constructive criticism, the time taken both to read my missives and to comment on them, and your continued loyalty as I’ve endeavored to find my voice. Thank you to everyone, and to close, here are the McCafferty photos that won a space on our Christmas card this year:
He’d wear it every day if he could…
The best Christmas shot of 182 taken (no exaggeration)…
Clearly he got the “adventure” gene
There are no words for this one…
Happy New Year to all!
December 29, 2010
Purge
I’ve become a technology queen this year, what with blogging, importing pictures from both our own files AND the internet, as well as mastering the art of the hyperlink (Mark Zuckerberg is running scared, mark my words). My husband has been a (mostly) patient instructor in all of these areas so that I might wear the crown rightfully, has generally ignored me as I’ve complained that the kids sucked out all my technology brain cells at their births, and has instead encouraged me to keep on trying no matter how seemingly insurmountable the task at hand. I’ve got a few skills under my belt now (watch breathlessly as Kim learns to download her own photos in 2011 AND send them to the right people), and have since felt a sense of confidence return to me that this old dog can learn a few tricks, and perhaps recapture those she enacted with ease before her sons permanently incapacitated her memory.
Always blame the kids when feasible.
I’ve been on a roll lately, and since I had some time left before my little one came home one day, I decided to knock one more technological item off my list in my remaining minutes of freedom before I donned the mommy mantle once again. It seems I’ve ignored my bookmarked links, which had subsequently mutinied against me and become an unwieldy mess (it takes me three full minutes to scroll down to my own blog, something has to go). So, I decided in the spirit of year’s end to downsize, a skill I’d actually managed to retain all these years (after Jeff reminded me right-clicking was NOT a fast-track to erasing my entire hard-drive). I grabbed the good chocolate and got down to business, reminding myself this couldn’t take THAT long as I had employed the delete button on numerous occasions since Justin graced us with his presence (okay, I’d done this twice since he’s been born, but who’s counting).
As it turns out, when you haven’t conducted more than a light weeding in seven years, and there’s several hundred bookmarks mocking you, you should really prepare for quite a walk down memory lane. In my own defense, I did leave a lot of these sites as visual prompts for when I was writing my manuscript, but since I finished my tome almost a year ago I don’t really have a lot of excuses left for my laziness. So I encouraged myself to indeed let go, and then I got down to business, deciding to go in chronological order for old time’s sake.
We’re just a bastion of spontaneity chez McCafferty.
As I banished each site to the etherworld, I briefly placed myself back in the time period where I had felt it necessary to have that information, perhaps even deemed it vital. With hesitation, I recalled the fear I’d felt in those last few months before Justin’s diagnosis as I clicked to that first excellent site I’d discovered, the one regaling me with early signs of autism that seemed to embody so much of my oldest’s son’s behavior.
Delete.
I recalled the desperation I’d felt when searching for words to reveal to me the mysteries of autism’s causes, and my frustration as the word “unknown” seemed to mock me at every turn.
Still annoyed delete.
I smiled ruefully as I perused the half-dozen screens promising refuge from the scourge of colic, none of which alleviated a single symptom in my boy.
Vengeful delete.
I didn’t even bother opening the myriad pages describing different therapeutic approaches all touting progress, because we’ve immersed ourselves in ABA, and it’s made a profound effect upon my child’s behavior.
Confident delete.
I right-clicked on numerous sites promising the best party supplies EVER for a one-year-old’s under-the-sea theme birthday party, and remembered how I knew in my soul this would be the only party Justin would ever have where he was just a difficult child, not one with a diagnosis as well.
Sigh, and delete.
I laughed as I purged the site revealing the caloric content of Starbuck’s lighter liquid fare, both for my idiocy for caring, and my remembrance that for many months that walk down that long hill with Justin for a break from ABA was my (and truly, our), single daily saving grace.
Joyful delete.
I briefly opened a few of my bookmarks related to the “autism diet” to see if anything new would hit me, recalling how I concocted homemade chicken nuggets from scratch for my reluctant eater for over a year, despite my cooking disability. I remembered my despair when it became apparent Justin was not a “responder” to his new food repertoire, and my elation when the removal of gluten and dairy seemed to appeal to Zachary’s troubled tummy.
Somewhat grateful delete.
I had to pinch myself from rereading all of Doc Jensen’s insightful LOST missives, reminding myself I had a kid getting off a bus in ten minutes and that this iconic show was indeed, despite my devastation, over.
Wistful, soul-sucking delete.
I brutally purged the sites where we ordered the pH strips we used to discern if Justin had left even a drop of urine in our toilet bowl during our year-long potty training debacle, the flimsy papers we’d used in our hopes we’d one day reward him for a single success before he turned fifty.
Exhausted delete.
Next to go, sites which for a small fee would absolutely GUARANTEE our son’s recovery.
Pissed-off, magnificent eye-rolling delete.
And last, but not least, the site with the fabulous review of Speed-the-Plow, the Broadway play we used as a brief escape from our youngest’s regression last year, only to be told upon arrival our boy, Jeremy Piven, was not available to play his role due to illness from mercury poisoning.
For this one, I used the Tina Fey/Amy Poehler SNL “REALLY?!?!?” delete.
The entire activity was as therapeutic as I imagine a good cleanse to be (nope, not old enough for that colonoscopy yet, thank God), and I managed to conduct it in enough time to finish that chocolate and prevent those bus drivers from returning my kid to school. It’s done. Those reminders of the past are gone. Those issues from our past are gone. The only thing remaining is both my gratefulness at having surpassed these problems, and my glee at having remembered how to scourge my bookmarks ALL BY MYSELF.
And for those of you looking to purge, to relieve yourselves of at least some unnecessary worries as we near year’s end, I’ve got one small encouragement for everyone out there.
Just hit delete.
December 28, 2010
Gratitude Attitude
This week’s Gratitude Attitude goes to both of our families, for making Christmas Eve and Christmas Day so much fun for all of us, especially the boys. Thanks for all the extra effort and support!
December 26, 2010
Community
An elf with rock star aspirations, more “naughty than nice” letters, and the probable kidnapping of the jolly old star of the show. Alas, I’m not alluding to the holiday episode of Jersey Shore, because the latter part would be a welcome improvement in my eyes. No, I’m simply referring to the lovely holiday play, Chasing Tinsel, that Justin and I were privileged to view this weekend at his school (and armed with our new behavior management techniques from the fabulous “Miss M” as well as a few snacks, we almost made it to intermission).
After a brief tussle upon initially entering the auditorium (Justin was convinced the brightly wrapped prop-presents were indeed for him), we quickly settled into one of the front row seats, and were immediately greeted by his teacher. I’ve been certain that Justin loves his new school, mostly from the way he bounds to the bus in the morning and practically launches himself into my arms from the vehicle at the end of the day, but if I needed reassurance, I got it. Justin heard her say his name, did a double-take when he figured out who she was, and treated us both to the view of his joyful grin overtaking his entire face.
My boy truly gets who loves him.
After a brief sojourn to the fifties-style girls’potty and a complete rejection of the salty and sweet for-purchase snacks in the back of the room (the snubbing of which made me break out in a cold sweat as I wondered if his “goody bag” indeed contained his favorite pretzels), we quickly returned to our seats. We retained our Christmas cheer after I gratefully located Justin’s “twists” and offered him a juice box, and he smiled in recognition as I showed him the timer with its wealth of red. We settled into our seats to be regaled with tales of greedy children and icon abductions, and I noticed that Justin, particularly during the singing scenes, was hanging raptly onto their every word. He even grinned at me periodically and checked to see if his teacher was still in attendance, and we soon made it past the thirty-minute-marker that usually symbolizes his impending egress. He was far more engaged than when I take him to 3-D movies, even paying attention to scenes not involving pretty, talented, teen-aged elves.
Heck, I may have to rethink the insanity of braving Broadway with him.
We didn’t quite make it to the halfway point, although Justin sat dutifully for TEN EXTRA MINUTES after he signaled his desire to leave and was confronted with our coveted time-piece. Since we were within spitting distance of his teacher and one of the directors of the school, I couldn’t have been more proud of his patience. He saw the timer, glanced at me and smiled, and slid back into his seat to take in the next scene. Since he was out of pretzels and juice by then his only sensory option was visual, and he seemed perfectly happy just to wait until I released him. There was not one complaint, not one cry, not even the tiniest of protests.
He made us look good.
All too quickly the clock wended its way to white, and I honored our contract, and gathered our stuff to leave. We were briefly waylaid by the executive director of the school who was kind enough to tell us we didn’t need to leave if our only reason for departure was a “noise issue”, and I happily responded that no, thank you, he was just done, and we were ready to go. I settled him into his harness and we headed for Wegman’s (of COURSE I was going to get some food out of this), and as my faithful GPS helped me navigate the labyrinth of circles that is the heart of New Jersey I had a few minutes to reflect on why Justin is so happy, and why I am in such a state of peace. There are multiple reasons, but I’ve become aware of one in particular that has come to have great meaning to me.
We are truly part of a community.
I’ve mentioned before that I’ve been blessed with family, good friends, amazing co-workers, a husband who does our food shopping (!) and of course my boys, but I can’t say I’ve truly felt part of any community before. I’m a white girl of middle-class origins, a veritable Western European mutt. I’ve wondered if entire cathedrals would crumble in despair as I darkened their doors due to my impatience with organized religion, and I was perhaps the worse sorority sister on record. The most distinct, unique thing about me is perhaps my Huguenot ancestry, which almost landed me a full scholarship at a hoity-toity women’s college (when it required an emphasis on economics I wisely declined, deciding I actually wanted to obtain a degree one day). I’ve felt loved in my life, included, but not really unique, not a part of any particular cohort.
Until now.
Ours is a community composed of eager volunteers in our local autism organization, men and woman who strive so hard to provide the training of police officers and teachers, as well as those blessed opportunities for fun that all families with disabled children need.
It is comprised of the online bloggers I’ve come to know, both for their eloquent missives and our personal interchanges, sometimes poignant, often hilarious.
It encompasses that fleeting moment of eye contact between two parents at a pediatrician’s office, imparting instant understanding, compassion, and often humor of a shared and harrowing situation.
Our community includes my sons’ schools, where teaching my boys seems to be a “calling”, not just a job, for all the faculty involved.
It’s not a community I would have ever thought I’d be a card-carrying member of, and certainly not one I would have chosen for myself and my family years ago. Its membership comes with many burdens and obstacles, and often I’ve found its entirety diminished to a circle of four, as our family has simply tried to make it through a day.
But our horizons are broader now, our boundaries have extended to embrace both people I’ve actually met, and those whose presence might never physically encounter mine. It is a warm, accepting place, and I am so grateful to burrow there, to have found its grace.
And I hope for all of you still searching for yours, in whatever form your sanctuary takes, that you find its confines soon.
December 21, 2010
The Look
This past Sunday our local Elks Club held their annual holiday bash for children and adults with disabilities, and since I’d been told by my friends that it was worth schlepping to, this year I finally signed the kids up for it. The past few events I had avoided in part because they coincided with Zach’s naptime, and since my youngest is a phenomenal sleeper there is very little in the world that could get me to keep him out of the house at that point of the day (believe me, we’re talking good dark chocolate AND wine would be required). I’d also decided to forego taking Justin, because frankly the thought of killing two hours in between chicken nuggets and Santa seemed especially grueling. There are only so many videos one autistic child can watch over and over after all.
This year, however, Zach has begun (much to my dismay) to relinquish that gourgeous hour of naptime mid-day, and now I’m also armed with the timer that will hopefully continue to extend my oldest’s son’s willingness to stay a little longer than five seconds outside of our home. Being the crazy, spontaneous fun-loving gal that I am, I threw caution to the wind and signed them both up, figuring my husband and I would do shifts. I assumed I would take Justin first and that he’d last long enough to eat lunch there, and then perhaps I could cajole him to stay for a little while after that. I’d heard that practically the entire special needs community attends, that maybe he’d get to see a few of his classmates from last year, and mommy might also get to talk to adults for a little while. Since I’m not a big fan of the nugget, socialization could be my reward.
The gig started at noon and we arrived fashionably late at 12:15, and as I searched with one eye for a place to sit and the other for anyone I knew, I hoped the food would be served relatively quickly. We actually found seats at the door, and Justin settled in with a juice and video he hadn’t seen in an eternity, making certain to slide every box of candy canes on the round metal table far out of his personal space. It didn’t look like lunch was being served any time soon, so I corralled one of the friendlier looking Elks and asked him to check on meal times in the kitchen for me. He came back with the grim news that they were a bit delayed and it would probably be another twenty minutes, and I thanked him and quickly counted out how many more Pixar movies I’d sequestered within the goody bag. So far, this wasn’t looking good.
I had a feeling that even with my trusty timer we weren’t long for this party, so if I wanted to get a feel for the event I’d better look around now, and I did. There were elves in full regalia throughout the place, and enough glittering décor to make this large barren room seem festive. A DJ was playing Christmas favorites to a variety of children and adults who were gleefully rocking out to Jingle Bells and other assorted tunes, and everyone seemed to fit the definition of merry. I looked back to the entrance in time to see my friend and her husband walk in with their two boys who are also on the autism spectrum, and I quickly motioned her over so she could claim the four seats I’d managed to save for her and her family.
Her sons threw off their coats and hats and made a beeline for the front of the room with her husband in hot pursuit, and I knew we only had a few moments together before she had to go grab a child. I looked down to see how Justin was doing, and heard the sucking sound of the last remnants of a juice box being consumed, and realized he was already watching the last (and twelfth) movie I’d brought with us. I returned to our semi-interrupted dialogue, then felt the tug on my sleeve coupled with the shove of the goody bag to my hand that always signifies it’s time to depart. Since I’d already shown him the red timer twice by now and its slight arm had since drifted into white territory, I knew the gig was up.
I looked at my friend and said “Tara, we’re not even going to make it to lunch”, and as I glanced around the room at all the other children reveling in the festivities, some clearly also on the spectrum like my son, I momentarily felt such a sense of defeat. There’s going to be food he likes, and a present. He’s in a Christmas outfit, it’s clean, and everything matches. Can’t he just suck it up for twenty more minutes?
Once again I felt that insistent pull on my sleeve, and so I turned to my oldest and told him somewhat impatiently to “wait”, then swiveled back to my friend. I looked at her and said “We’re leaving, I’ll be back with Zach”, and she returned my gaze, held it for a moment, and said “I’m sorry”. Just two simple words, and a look that said “I get it, we’re both in the same leaky boat”. The entire exchange, both verbal and visual, took mere seconds.
But for me, it was enough.
I smiled back at her and said “thanks”, and turned back to my clearly impatient child and told him we were about to go. With a “see you later!” trailing behind her my friend sprinted to the front of the room to claim a kid, and I swung cluttered purse and overstuffed, oversized goody bag onto my shoulder with one hand, and claimed my own child with the other. I felt my malaise disappear, in part because I’d have a shot at fun with my youngest later, and in part because we’ve made so much progress with Justin lately at other events. I had to remind myself to be realistic. He’s a boy. He’s seven. He’s autistic. And regardless of the latter situation, like any other kid, he’s just not going to like everything.
And we made our way out of the room on a mission to McDonald’s, past regretful elves who perked up when I told them the other kid would be back later, him gripping his cherished DVD tightly, his mother responding with a grip of her own to his free hand. We were moving on, much as we’d done in the past, much as despite our new arsenal of behavioral techniques I’d be certain we’d do in the future as well.
And this time, it truly was okay.
Gratitude Attitude
Today’s Gratitude Attitude is extended to our local Elks Club, who put on such a lovely party this past Sunday for children and adults with disabilities. The food was great, the dancing a hit, and of course, watching faces light up as Santa entered the room was the best part of all. Thank you so much for doing this for our community, and happy holidays!
December 19, 2010
The Santa Clause
Last week my husband came downstairs, grabbed a diet Dr. Pepper and some GF/CF Swedish fish that are supposed to be Zachary’s, and proclaimed that something momentous had just occurred. No, Bristol Palin didn’t win Dancing with the Stars the night before (NOBODY puts Baby in a corner). No, he hadn’t discovered his impending end-of-year bonus check would cover not only Christmas, but those insanely expensive “sexy boots” I’ve been eyeing online for weeks now. And no, Justin didn’t recite the Pledge of Allegiance or sing “Pants on the Ground” to him before he got on the bus this morning. The truth is, I’m referring to a far more modest miracle, one that has a direct impact on our family.
Mall Santa is in the house.
Due to the fact that my kids have special needs, they will each have approximately 5,000 opportunities to meet and greet with Santa this year. There’s the Challenger party, the Elks bash, and a wonderful little shindig near our local aquarium that includes not only his Jolly Lordship but FREE CANDY (you all SO know I’m going to that one). There will be multiple chances for Justin to look bored and fix me with his infamous “REALLY mom?” stare, and for Zach to let his eyes well up with tears in such dramatic fashion that any soap opera star would be proud. We’ll attend as many sightings as we can, but for me the big kahuna, the “REAL” Santa, will always be the portly dude smelling slightly of nicotine, situated somewhere between Macy’s and Victoria’s Secret, just like when I was a kid.
Hell, I gave birth. It’s my God-given right to use my children to relive some of my childhood, isn’t it?
After Jeff made his pronouncement we both ignored the fact that it was still November, that in Zachary’s terms we hadn’t even “put away” Thanksgiving yet, and whipped out our planners (yes, my husband’s is electronic, and I still use a slate and chalk). I remembered Jeff was taking the day before the holiday as a vacation day, and since both kids had half days then we figured we could get them off the bus, throw on their “pretty” clothes, and drag them to the car before they knew what had hit them.
I assumed Zach would be enthralled with the idea as Santa is all he talks about these days, and Justin would tolerate the trip as long as he got a bagel at Starbucks and a ride on the faux roller coaster our local mall houses. Since both of their parents would be there, we figured one of us could save Santa’s beard if Justin was not excited by our choice of outing (my eldest child is not a big fan of facial hair), and if we had to spirit him away Zach could still regale his idol with his Christmas list (and a long, long, list it is). We finalized our plans, I ripped the remainder of Zach’s treats out of my husband’s hungry hands, and began to anticipate how excited my little guy would be when we told him his Santa sighting would be tomorrow. I also reminded myself to have patience when he asked me 500 times if it was “tomorrow yet”.
The next day dawned, and Zach of course remembered our plans for the day, even trying to “reason” with me that Santa would rather see him first thing in the morning, so he should not go to school. I didn’t have the heart to tell him Santa was either asleep or on Stair Master at this hour, so I fibbed and told him Rudolph had a cold, he’d been delayed, and we’d have to wait a few hours.
It turns out lying to your kids is really fun.
After a few more years (hours) of bargaining I finally got both boys off to school, had a taste of a “life”, and packed the eight thousand items necessary for our field trip to shopping mecca. What seemed like five minutes later I heard the “beep,beep,beep” of the bus backing up as it overshot our driveway, and I rushed out with excitement, expecting to see an ecstatic boy launch himself into my arms and yell “it’s tomorrow Mom!” with glee. Instead, I watched as Zach’s exit required the assistance of the aide for the entire length of the bus, culminating in a stand-off at the top of the stairs as he refused to grip the safety handle. When I asked if he’d had a bad day he simply uttered a “HARRUMPH!” complete with crossed arms, proclaimed himself a “BAD BOY!!” without a hint of remorse, and reluctantly lowered himself onto the asphalt and trudged his way back to our home.
Ho.Ho.Ho.
After five minutes of witnessing our youngest child engaged in a snit that made my worst PMS episodes look tame, Jeff and I contemplated canceling. I then broached the subject with Zach and was met with a cascade of tears that would have made Niagara Falls proud, and since we’d promised him, we sucked it up and said we’d go. I had a feeling we would deeply regret our decision.
I was right.
We placed both boys in the car, and Jeff quickly found some Christmas carols on Sirius. I relaxed a bit in the driver’s seat, somewhat secure in the knowledge that Zach loves any form of transportation, and whatever tirade he was immersed in would probably disappear within minutes of playing “Look for Christmas Crap” (yes, I leave out the last word when I refer the game to him). The Chipmunk song was just ending (thank God) and Taylor Swift was about to commence a lovely rendition of “Oh Holy Night” when I heard “HARRUMPH!” again from the back seat, and looked back in time to see the crossing of the arms that means that good times are to come.
Here are the transcripts from the next few minutes in our car. Nobody will be subpoenaing them any time soon:
Mom: “Zach, do you want to sing a Christmas song?”
Zach: “NO, NO CHRISTMAS SONGS, THEY’RE TOO SLOW!”
I figure I can beat him at this game. I’ve got forty-plus years of Christmas carols on the little bugger after all.
Mom: “How about Jingle Bells then?”
Zach: “NO, THAT’S TOO FAST!”
Of course it is. Stupid, stupid Mama.
Jeff, trying valiantly to change the subject, chimed in “Zach, are you excited to see Santa?” and was rewarded for his efforts with “NO, I DON’T WANT TO SEE SANTA, I’M A BAD BOY’, which at the moment, is the whole truth and nothing but the truth. Because we’re already annoyed with ourselves for trying this trip anyway we decide to play with him a bit, see if we can cajole him out of this foul mood, and amuse ourselves in the process. Since I’m not sure we’re going to make it to Starbucks I realize this might be the highlight of my day.
“Zach, want to see Rudolph?”
“NO!!!”
“How about Donner, Blitzen and the rest of the reindeer posse?”
“NO!!”
“How about Elmo?”
Pause, then “NOOOO!”
“Conan?”
“NOOOO?”
“Clooney?” (hint, that one was mine).
“NO,NO,NO!!!!!!!!!! (he may not be my son).
We eventually made it to our destination, and true to form Justin blithely ignored St. Nick and tried to abscond with most of the fake presents surrounding him, and Zach displayed almost as much desire to sit with Santa as he does when confronted with his potty seat. I won’t get my fabulous photos this year, but I’ll leave you with a far more festive group of pictures from “happy Christmas past”.
And to all of you going to see “Mall Santa” this year, please don’t forget to mention I, however, have been a very, very, very good girl.
December 16, 2010
Stand Up
We were running a few minutes late (as usual), but my husband assured me as I frantically attempted to find the intake number for the hospital that we’d make the appointment in time, and of course, he was right. We slid into the parking lot with two minutes to spare, and I barked out orders (again, as usual), telling Jeff to grab the boy while I snapped up the gear and raced to the sign-up desk. There was a little validity to my anxiousness, as I’d been instructed on the phone that the first visit required a myriad of forms and questions prior to seeing the psychiatrist, and it was imperative we be punctual. I sprinted up the stairs of what appeared to be a restored mansion and waited impatiently behind another mom who also appeared to be out of breath, and allowed myself a sigh of relief when I informed the secretary of our appointed hour and not even an eyebrow was raised. I’ve learned, after dozens of such visits with my two boys, that the person at these appointments whom you really want to like you is always the secretary.
We’ve schlepped up to north Jersey on this uncharacteristically cold November day because we’re tentatively shopping for a new psychiatrist for Justin. Jeff and I are hoping to find someone not only to dispense and advise us on medications as our current one does, but we’re also eager to think out of the box a bit, and align ourselves with a practitioner who may even offer to enroll our son in some experimental studies some day. It’s not that we don’t like our current therapist, although we’ve had a few issues in the past that have since been resolved (see Summer Solstice for our mental health professional back-story). I had my hissy after the debacle of the “there’s no waiting area for your autistic son, try the hallway” and the situation has since been resolved, including both a shorter wait-time for our appointments and an enclosed and safe area for us during the interlude between patients. That one particular afternoon made me long to ask our shrink for my own Xanax prescription, but the situation was subsequently addressed to my satisfaction, and I’m a big enough girl to forgive and move on.
Sometimes.
That day did make me think however about alternative practitioners, about the wisdom of not remaining with the “status quo” solely because our patient-doctor relationship was comfortable, and equally importantly, because I knew how to find the psychiatrist’s office. Despite the five thousand other things my husband and I need to accomplish during the day I asked him to conduct a bit of research for me this summer, and in July we placed ourselves on the waiting list for one of the more prominent hospitals, and settled in to wait until November for the call that would let us know the date of our pre-Christmas appointment. Here in Jersey, any professional for autism worth their salt requires approximately a six-month wait, and although neither my husband nor I was really jazzed up about wading through two more seasons of Justin’s penchant for tearing things to shreds or flushing expensive game cartridges down the toilet, we knew we really didn’t have an option. Hell, it seems as if every other kid in the Garden State is on the spectrum, and there’s only so many doctors to go around. Jeff and I accepted we’d have to suck it up and wait.
When Thanksgiving came and went without a call however I urged Jeff to phone them again, and after another week and several messages my husband finally made contact. It appeared that after five months of “patiently” waiting, almost half a year of watching my son (and my toilet) suffer despite our behavioral interventions, that the intake people had forgotten to place our names on the list. They had a record of our call, validated our communication with them in the summer, but wouldn’t honor their mistake. We were now looking at an appointment in March at the earliest, with the possibility of an earlier visit if there was a cancellation. This meant my boy would be waiting at least eight months to see this new doctor through no fault of our own. Since it was now almost December, we knew even if we contacted another organization we wouldn’t be gracing its doorstep until summer. Frankly, unless we wanted to try another state, which was just a wee bit impractical for follow-up visits, they had us over a barrel.
To say the least, mommy was not pleased.
In the distant past I would have let this situation go, particularly if it only involved my physical or mental health, would not have felt inclined to make any waves. But this was my child’s health at stake, his well-being compromised because of simple human error. I was aware I might not be able to alter what had happened, but I also knew I just couldn’t sit by and not voice my complaints (okay, outrage, let’s be honest here). Somebody had made a mistake, and come hell or high water, this doctor was going to find out about it. Heck, maybe she’d even venture to her office on a weekend for us to make nice.
Sadly, these thoughts are what comprise my fantasies these days.
So, I called. I got her assistant’s extension, was placed into voice mail, and considered hanging up and waiting until I could speak to a “real” person. Since our past history with this establishment hadn’t been so stellar with return calls I realized I might be the one required to do the dialing, and given my limited capacity to remember anything these days, I knew this might not be the best choice to make. I waited out the recording, and after five thousand instructions from the well-modulated voice of our psychiatrist’s right-hand “man”, I finally heard the dulcet tone encouraging me to leave a message.
And, I did.
I used my grown-up-but-respectful (believe me, I’ve had to practice it) tone of voice, and let the powers that be know the specifics of our problem, and that the error had been on their side, not ours. I informed them that my child was suffering, that even if we went with another agency we’d never see a professional before the end of the calendar year, and that was on them, not us. I asked the void of voice mail to come up with a solution to the situation, sooner rather than later, and let them know that an appointment at Easter was not an acceptable way to rectify this error. Finally, I told them I expected a return call in a timely fashion.
Believe it or not, I got one the next day.
And with a few minor miscommunications later, one in which for two minutes I contemplated the possibility that Justin had missed an almost an entire day of school just so his mommy could drag him to the wrong facility, we did indeed get to see the good doctor, actually a month before we were originally supposed to be seen. She was lovely, believed in waiting rooms AND toys in her office, and gave us two of the best articles outlining the myriad treatments of autism and its ancillary effects that either Jeff or I had ever seen (and yes, we read a lot of them). She had a sense of humor (bonus!), and was compassionate, and perhaps most importantly had a satellite office located no further from our house than our previous mental health professional. Our new psychiatrist even got us out of there in time for lunch at Applebee’s.
In short, she was a winner.
There is a lot of talk about “gifts” with autism, both for our children and for their families, and far more discussion about whether or not the concept is valid or completely bogus. Believe me, there have been many days (and nights) I’d happily put anyone in a choke-hold who proffered up the idea that any of this was “a positive”. I’ve found however that fighting for my children, navigating the labyrinth of IEP meetings, Early Intervention assessments, after-school programs and numerous autism professionals has been a gift to me, has toughened me up, inspired me to make it right for them whenever I can. I won’t always be able to “fix it”, and I’ve come to a semi-peaceful place with that.
But over the years, for my sons, I have finally found my voice. I know, from meeting so many parents and reading their stories over the years, that so many of you have found yours too. I applaud you, and will only stop clapping long enough to pat myself on the back as well.
And as the year draws to a close, let’s raise our glasses, ones which hopefully contain the good wine, and make a toast to each other in honor of never, ever, shutting up.
December 14, 2010
Pajama Party
Llama Llama Misses Mama. Llama Llama Mad at Mama.
Mama Llama NOT in Her Pajamas.
All but the last title are some of Zachary’s favorite reads. The latter suggestion came from my son at his school’s “pajama book fair” last evening, as he gleefully ran to the overstocked shelves and pointed out the covers of his faves, then turned and admonished me for not donning sleepwear for the event as he had. I simply smiled and told him that only the kids were supposed to wear their pajamas, and reminded him he only had five minutes left to pick out the one book mommy would purchase for him (which inevitably would expand to at least two purchases). He regarded me with a slight air of disdain for both my time limitations and my choice of apparel, then ignored all the beautifully illustrated, award-winning literature, and zoomed over to the table sporting the Dora the Explorer coloring books, of which he already possesses at least fifty.
At least a fashion crisis was averted. Trust me, nobody sees me in my sexy winter long-johns but Jeff. It’s my gift to the world.
The fact that we’re even here with Zach happily wearing his favorite Cars pjs is nothing short of miraculous. It was only a six months ago that my youngest’s lovely teacher suggested a “pajama Thursday” as a possible event, and at the time all members of the McCafferty crew had eagerly participated in preparing Zach for that special day in his new school. We’d talked thoroughly through the impending deviation in fashion, and repeatedly reassured Zach that wearing nightwear in the daytime was permissible.
We’d even had a mini-fashion show the night prior in which I was his assistant, his father and brother his audience, where collectively we decided which set of footies would grace his classroom the following day. He had seemed exhilarated at the prospect, even went to his crib asking to hold his outfit throughout the night. Zach normally does not like to stray from routine (a slight understatement), but I had been pleasantly surprised by his receptiveness to this suggestion, and fully anticipated I’d encounter an animated and excited child the next morning.
Hah.
When confronted with the actual prospect of wearing his “chosen ones” to school I was met with a tantrum of such gigantic, unprecedented proportion that Justin actually abandoned his movie to come upstairs and check out the show (also an unprecedented event). The caterwauling even woke up my husband, the man who has slept through multiple alarms, fallen tree limbs on our roof, and even the siren song of dozens of hallway fire alarms signaling impending doom in our Virginia apartment. Not only was Zach so NOT slipping on this ridiculous choice of clothing, he was apparently furious I’d even suggested it.
To this day, I’m not quite sure he’s forgiven me.
But tonight he’s all smiles as he positively reeks of cuteness in his body-length red, and as we sail happily through our evening I cannot help but make comparisons as to where we were just half a year ago. This spring for example, I (and everyone in the room) would have been privy to an ear-splitting meltdown if we had attempted to depart the premises without every Dora book in sight, because it wouldn’t have felt “right” to Zach to exit without the entire set.
I wouldn’t have had the satisfaction of watching my three-year-old listen respectfully (most of the time) to his new fave The Polar Express, choosing to ignore the adorable yellow-haired girl clamoring repeatedly for his attention (and the glances of every other boy there, it’s a blond thing and obviously beyond our control from birth).
Certainly, we would never have participated in the subsequent art project which included both sticky glue and paint in the rendering of the good train himself, would instead have skipped that portion of the evening’s festivities and headed for home. That part would have been particularly sad, as it’s likely my son would have been upset at our departure despite his personal rejection of those glue sticks, a response which would have obliterated my chances for a cupcake purchase from our high school’s cheerleading squad as we left.
Hey, rewards are not just for kids.
Eventually the evening concludes, and as we bundle up to brave the arctic winds (okay, it’s Jersey, it’s a SLIGHT exaggeration) I look down at my small son and mark this moment and the ones that preceded it tonight. I give thanks to all the professionals who helped bring him to this place, the teachers, therapists, relatives, and friends who have paved the way to his entrance back to our world, helped him rediscover it with an ever-increasing ease.
But I also silently thank him, for the circumstances that have permitted his brain’s tender neural connections to allow him the option to enjoy this evening, not just the ability to endure it. In the end, despite all the therapy, the love, and the many hours spent in simple interactions, so much of our children’s progress rests in their own hands.
And as we step into the parking lot I encircle one of his cold ones within the strength of my warmth, and promise, in my own way, never to let go.
December 13, 2010
Gratitude Attitude
This week’s Gratitude Attitude goes to the actors, writers, musicians, set designers, and craft services (yup, there was food) who created such a wonderful and memorable play at my oldest son’s school this past weekend. The songs, dancing and plot captivated my son for the better part of an hour, and that is no mean feat! We were honored to attend. Thank you for all of your hard work!
