November 30, 2010
This week I simply have too much gratitude to thank just one person (aren’t I the lucky one?). First, I’d like to show my appreciation toward my family for helping to “manage” my children during Thanksgiving dinner. Justin tends to eat quickly and then view everyone else’s plate as a buffet, and I have to say it was lovely for Jeff and me to actually finish a meal for once without having to inhale it and then monitor him. We also appreciate all the other little nuances that went into making that day easier for us, and we ended up having a wonderful time. Thank you!
I’d also like to extend my gratitude to Mary Tara, our SEPTA president, and the rest of the executive board for allowing me to speak last night at the November meeting. It was a great audience (people actually laughed in the right places), one which was gracious enough to listen to me blatantly promote myself for twenty minutes after a long Monday. Thank you so much for giving me the opportunity, I truly appreciate it!
November 28, 2010
I attended my oldest son’s first IEP meeting at his new school yesterday, an event which lasted more than two hours, was conducted with consummate professionalism, and was coupled with a level of conversation which actually made my brain hurt afterwards. Before some of you decide to hate me, please know that not every meeting throughout the course of my child’s educational career has been this pleasant. Trust me, my mom and I have really “worked it” in two different states to get to this point.
I have enough PRISE manuals to wallpaper my bathroom now (and I mean the big one).
Most of the meeting itself was unremarkable, filled with discussions of goals we hope are attainable for Justin, lovely anecdotes of how well he’s fitting into his new placement (I’m a sucker for that stuff), and a very cogent explanation of assessments conducted on him up to this point. Other than my noting not a single behavior was deemed worthy of discussion (which is not to say he doesn’t have them, they’re just not prevalent enough to talk about anymore), there were no tremendous “aha!” moments, no surprise concerns. Between my mom and me, somebody only cried once. It was a good day.
In addition to being an IEP get-together this was also technically a “placement review” meeting, and I’m happy to say they’re keeping him (2010 continues to be a banner year chez McCafferty). We all even came to consensus easily on which augmentative device Justin should be upgraded to, since it’s become clear he’s outgrown his Springboard. Within the next few months my seven-year-old will be getting an iPad, and in seven seconds he will understand it better than I will in seven days.
Even though I’m technologically Amish, that’s still saying something.
My mom and I actually had time to grab lunch post-meeting, a rare treat for us, and as we drove over to my cherished local Panera Bread I had a few minutes to reflect on what had transpired over the last few hours. The entire conversation had simply been so civilized, so respectful, so incredibly knowledgeable. Without a moment’s argument my school district concurred with me and my child’s school that the fairly sophisticated iPad was best for my son, and agreed to fork over close to four figures to purchase it. The meeting concluded with a long-term plan which will hopefully broaden entire communicative worlds for Justin. I was in heaven, even without being the beneficiary of a free meal afterwards.
Then, while driving, I remembered an email I’d received that morning about a fellow blogger, one whose son desperately needed the same device, and whose school district clearly wasn’t going to purchase it. I felt a wave of guilt wash over me (sorry, but my Catholic and Jewish buddies haven’t cornered the market on that emotion entirely), and sent one of my silent vibes to the universe that by the end of the day the lovely fundraiser one of her friends had put together would result in its acquisition. I had read a bit about how a borrowed iPad had been instrumental in helping this little boy, and was hopeful a device which had so eased his way in this world would soon be his permanently.
And it struck me, we talk all the time about how lengthy the spectrum is for our children and adults with autism. We can’t forget how wide it is for the parents who are navigating it either.
There are still families residing in a myriad of states where Early Intervention services afford children only scant resources, much as Virginia did for me in the long fifteen months I was my child’s primary ABA provider. Entire school districts in this country remain inadequately prepared to meet the needs of their autistic populations, and continue to struggle financially to alleviate the situation. Despite progress made on this front, many insurance companies still refuse to pay for science-driven, evidence-based therapies, so families can supplement what their children are not receiving in school. And as for my pet cause, long-term care, it was just last week I was told how in one mid-western state the government was encouraging caregivers who could no longer be responsible for their adult disabled children to simply abandon them.
Clearly, this last suggestion is not a viable solution.
I am well aware Rome cannot be fixed in one day. I just have to share that I was really moved this week by such a coming together of minds and hearts, how a community reached out despite its own disparate struggles to help a family most of us have only seen on the internet, and did so willingly. I’ve written often about how I wish our “clan” could learn to respect one another’s stances (and boy, there are many), and I have to say I’ve felt the tide turning this year, have with eagerness watched a growing tolerance for our community’s various views. I’ve also witnessed an increase in tremendous acts of kindness, many from families experiencing a myriad of difficult situations themselves, yet still willing to reach out to others. I feel that within the past year being a member of this multitude has begun to provide entrance to a kinder, gentler world.
And I just want to say, I’m proud.
November 23, 2010
Seriously, what am I NOT thankful for this year?
That poor, Cinderella/pre-handsome prince/turkey day always seems to get short shrift in the McCafferty household, what with being book-ended by two holidays hosting an endless supply of sugar and PRESENTS for God’s sake, so I’m going to try and give it its due. A number of truly wonderful things have happened in 2010, and I’ve chosen to write about them now in lieu of scribing them at New Year’s (which used to be one of my favorite holidays until I gave birth and no longer saw the need to stay up past ten to usher in anything). So here’s my “top ten list”, including a few poignant moments for those of you who like that kind of stuff (and believe me, I’m with you sisters).
- I’m thankful I still like my husband and he does his own laundry (come on now, that’s HUGE).
- I’m thankful my mom helps me with all of my “projects” no matter how crazy, time-consuming, or how much of the work I actually delegate to her.
- I’m thankful for all of my girlfriend posses, from teachers to autism, from high school to college, plus just the random cool chicks I’ve recently met.
- I’m thankful Friday Night Lights has one more season (Panthers be damned!), and that I can finally tell my husband I like football (okay, mostly the casts’ “back-stories” AND looking at Taylor Kitsch, but it’s a step).
- I’m thankful for all the help I’ve gotten with this blog, from those brave souls patient enough to instruct me both in how to create it and how to make it pretty, as well as for the people who are actually READING it.
- I am ridiculously grateful to my sons’ schools, not only for tolerating me but for loving my kids and TRULY understanding their respective needs.
- I’m grateful someone coined the term “clandes-tini”, which I will explain in a future post.
- I am thankful, as always, for my “original” family, for helping us, for spending time with us, and for their inherent lack of drama (we make enough of our own here).
- And of course, I’m grateful for my beautiful boys. There are so many reasons why. Here are just a few.
I took my boy to a nearby local museum this weekend, one we’ve frequented many times before but haven’t visited recently. He’s technically both too old and too tall to go there anymore, as there’s an entire room that’s for the six and under set, but I can’t step foot in the building without letting him explore the Under-the-Sea wing or I risk a full-blown meltdown. The people who work there know me and Justin by now and continue to graciously wave us in, so I figure I can work this just a little bit longer for him. Hell, the Christmas trains come out next week and he loves that display, so I figure I can buy him one more year of perseverating on engines and freighters simply because the employees are nice. It’s just that at the end of the day there’s not much to do with your autistic kid in central Jersey in the winter, and I’m loathe to relinquish this one hotspot yet.
I guess I’ll have to stop sneaking him in when he’s fifteen.
They’ve changed the main display of the building from “space” to “weather/Mother Earth” recently, a decision which Justin has regarded with great disdain (I don’t think he’s going green anytime soon), but he still loves that “fishy” room. After perusing the wing dedicated to climate for a grand total of forty-five seconds (okay, eleven minutes, but that’s what it FELT like) we eventually end up immersed in crustaceans, dismantling lobster puzzles, and sliding down the giant whale’s tongue as tired mommy races around trying to prevent him from bowling over the two-year-old crowd. I refuse to get banned from this room just yet.
We finally end up at the wing’s treehouse that’s actually formed in the shape of a tree, the one that affords him the climbing experience that always interests him, and usually caps our trip. He is a creature of habit, and today he doesn’t disappoint. He scrambles quickly to the top, surveys the land before him in a manner that would make James Cameron from Titanic proud, then after allowing me enough time to actually sit down and relax for a few minutes, he slowly shimmies down, shoes in hand.
It’s been decades since I was thin enough to climb an internally constructed treehouse, so I suppose I should add “grateful he brought down his shoes” to the above-bulleted list.
He good-naturedly shoves his sneakers at me, waiting for me to prompt him to at least attempt to affix his velcroed footwear on the correct appendages, and with our combined efforts, within a minute he is once again fully dressed. I know this moment signifies the end of our adventure, and as he walks rapidly to the exit my mind is already engaged in figuring out just how many errands we can conduct on our way home before he freaks out. We are about five feet from the threshold of the doorway that leads to the entrance hall when he suddenly stops dead in his tracks, turns to look at me, and grabs my hand. I’m assuming he wants something, and am ready to tell him he can have a juice or snack when we’re back in the car, when I realize he’s looking at me. Intensely, truly looking at me.
And then he smiles.
Not just a small smile mind you, but a full-blown, take-over-your-face kind of grin that illuminates, well, everything. Without words, he explains that he had a good day. With his gaze he shares he’s appreciative that I schlepped him up here for the millionth time. Even though he doesn’t approve of weather as a museum focus, he lets me know in no uncertain terms he nevertheless approves of my Sunday outing choice.
He’s just happy.
And I am thankful too, not only that he’s finally, after many long, long years, capable of that state of grace, but that he can convey as much of those emotions in one expression, in one brief moment of connection, as my other child can in words.
It’s “school observation week” here in Jersey, an event which unfortunately falls just a week shy of conferences and the other half of the month of November, that thirty-day span in which both of my children will be around so much I can consider them home-schooled. Suffice it to say “mommy-time” is out the window, but the least I can do is suck it up with the best of them and get my tired ass to Zach’s pre-school and rock his world a little bit.
I know, nominate me now for 2011’s “mother-of-the-year” award.
About half the class ends up having a parent “represent”, and the moment I walk in the door I’m glad I decided to join the crowd and forego watching Rachel Ray that morning. He is overjoyed to see me, runs to my open arms with haste and bestows one of his sweet, chaste kisses on me, then runs back to his seat and resumes his appointed activity.
No histrionics. No begging me to sit with him. No tears wiped dramatically in Days of Our Lives fashion from his face. He’s happy I’m there, but he’s got work to do.
It’s the Christmas miracle come early.
For the next thirty minutes I get to watch my youngest son (the one who communicated solely by crying a mere year-and-a-half ago) dazzle me by matching the correct turkey to its requisite number, surprise me by cutting vegetables better than I do (given my culinary skills that’s not saying much, but still), and astonish me by sharing WILLINGLY with his neighbor. He transitioned to three different centers without prompting, blew his nose in a tissue rather than on his arm when asked, and didn’t adhere himself to my body even once with the conviction of a half-starved boa constrictor.
I know. He’s a prodigy.
For an entire half-hour I got to see how my son conducts himself in school, chat with other mommies (one of the best parts), and not get treated to a scene straight out of Sophie’s Choice when I told him it was time for me to leave. Thirty consecutive minutes of watching a class full of children engaged, chatting, happy.
I love both my kids (if you’ve read this blog at all, that’s pretty apparent by now). But I’ll go on record as saying I am so grateful for the progress my youngest has made this year, for the leaps and strides that have permitted him to attend a classroom without his own personal assistant, for the chance to have “real” playdates with children he considers his actual friends, and for the ability to convey his thoughts without struggling to speak them. I’m mostly thankful for these gifts for his sake, because his life has been made indelibly easier by these accomplishments.
I’ll share something else with you too. I’m also grateful for me and my husband that we get to experience this peek into a tiny “slice of normal pie”, this glimpse into the world I anticipated I’d inhabit so many, many years ago when I was pregnant with my first. It’s not a perfect universe. It’s still not always easy here.
But overall, it’s just so much damn simpler.
And in this week when our country traditionally gives thanks for so many things, both serious and trivial, I am grateful for the opportunity at times to be with one of my children, put aside my worries, and just breathe.
Happy Thanksgiving to you and yours!
November 21, 2010
A huge milestone has been accomplished chez McCafferty this week, one I sincerely doubted would be met by the time my oldest son became a teen-ager (which trust me, would have eventually resulted in a REALLY awkward situation, and not of the Jersey shore type).
My not-so-little boy is now slumbering in a real, bona fide, big boy bed.
Traditionally there has been a great deal of angst surrounding sleeping arrangements and Justin. My sweet guy spent almost his first half year “napping” or attempting unconsciousness while remaining securely belted into his car seat, which was the only way his sleep-deprived parents could ever cajole him to close his eyes for more than seventeen consecutive seconds. He never really approved of the bassinet either, howling his discontent mere moments after being placed into it and then continuing for an ETERNITY, or just an hour (which to his increasingly cranky parents eventually became the same thing).
We finally accepted sleep was not going to be his forte, and figured he could cry just as well in his crib, which we prayed he would acclimate to before we turned fifty. It only took two more decades (okay, YEARS, but it seemed that long) before Justin began consistently sleeping through the night, which to me constitutes ten uninterrupted hours. I continue to require enough time to get my beauty rest, have some wine, AND a catch a few hours of cable television.
Mommy or not, I still have my standards.
So no more car seats, cribs, cots, or junior beds allowed, Justin firmly resides in the big time now. Certainly, the bed I selected had to match the furniture, and I was FORCED to purchase sheets that compliment his room’s under-the-sea theme (because there had to be a theme of course), one wall of which is graced with a lovely mural I neither designed nor painted.
Come on people, I scrapbooked AND traced “turkey-hands” this week. Cut me some slack.
I’ve made this into an event here, with Zachary anxiously anticipating the bed’s arrival and construction (yes, we’re wimps and are shelling out the assembly fee, so sue me). We arranged the unveiling for a Friday evening, just in case it took Justin a few nights to accept his newest sleeping arrangements (yes, a few nights, I’m playing the glass overflowing here). Much to Zach’s delight we practiced hiding in Justin’s room and yelling “SURPRISE!” for his big brother’s grand entrance, so my youngest was primed and more than ready for the big night to commence. Only one wild card remained: I never really know how Justin is going to react to anything. Much to my relief, if I’d had any doubts as to how he’d feel about his upgrade, they were all banished the second he crossed the threshold to his room:
And here’s wishing to you and yours, one of my favorite things EVER, a simple, satisfying, good night’s sleep.
November 19, 2010
After a long, long day and too much caffeine (if that’s possible), it’s finally the conclusion of Back-to-School-Night number two for me. Even though I’m driving slowly and carefully through the back streets of central Jersey I know I’m mere minutes away from being strongly berated by my bitchy GPS for screwing up that damn circle once again, the tedious confluence of roads I hope I’ll master by the time Justin graduates. I’ve driven back from DC today, I’m tired, but hopeful I’ll make it home before Modern Family starts since I have yet to master my DVR, and despite multiple sticky notes I have yet to ask Jeff to do it either.
Hell, who am I kidding. Now I can’t even remember to reference my sticky notes.
But despite my imminent path to Alzheimer’s I’ve managed to retain various key elements from tonight’s event, a few facts that surprised me, and a few that simply validated what I’ve known about my son for a very long time. First, I listened enraptured as the school’s director discussed all of the exciting things about to transpire in the facility’s fifth decade. I watched her fight back tears as she attributed so much of the school’s progress to both the faculty and parents, particularly those who fought so valiantly forty years ago to create a safe haven for students with autism in the first place.
I was touched to hear that numerous teachers gave up time on a precious weekend to scrub the school’s newest acquisition, an elderly building recently acquired on adjacent property that will eventually afford autistic adults the opportunity to learn life and employment skills. I eagerly hung on every word that Justin’s teacher shared with me when we dispersed to our children’s respective classrooms, words that comprised such phrases as “eager to learn”, “mostly compliant”, and “extremely affectionate”, half-sentences I surely would not have been graced with concerning him even a year ago. I soaked up every word of the principal’s and teacher’s speeches, yet again so grateful to have found such a perfect academic and behavioral fit for my son. At the end of the night however, one comment from his educator stood out amongst all the rest, no ginkgo biloba required to retain it.
My oldest son has a friend in school.
This is not the first time I have been graced with such wonderful news. At Justin’s first out-of-district placement a little boy in a nearby class took him under his wing for a year, teaching him the ropes, keeping him out of trouble, persuading him to return to his classroom rather than chase after pretty pre-school girls (autism or not, he’s still social). When we eventually brought him back to district for kindergarten, he was fortunate enough to have an older neurotypical buddy for the two consecutive years he attended that particular school. The few times we ran into her in the hallway I could see exactly how thrilled he was to see her, what those thirty minutes five times a week truly meant to him. I recall having to hold back my emotions so I wouldn’t scare off a ten-year-old girl with my effusive gratitude. There are times we all have to rein in the crazy.
But this time, because this friend is with him all day in his classroom, the situation is different. I had the great fortune to meet him when we had our tour of the school, and although I won’t ask the teacher his name, it’s clear who’s “adopted” my child. Six weeks ago I was struck by this student’s facility with language, the minimal prompting required to extend a greeting to me and my mother, his obvious joy that we learned his name. I am told that he is Justin’s self-appointed buddy, that they walk together in line, break bread with each other daily, and are inseparable on field trips (don’t ever try to divorce Justin from his chosen pumpkin). This boy, this kind child with his own struggles to surmount, looks out for my son, protects him, encourages him to participate in activities which I am certain hold zero interest for Justin. He is the much younger and male version of Annie Sullivan for autism. I could not be more pleased.
As I wend my way through another of Jersey’s masterful mazes (and as I guessed, incorrectly the first time), I have to smile, because this issue of friendship has always been so important to me, and for once I’ve had absolutely no part in orchestrating it. I’ve yet to solve Justin’s other pending problems, how his parents will manage to support him to his death, what he’ll do to occupy his time after he turns twenty-one, where he’ll reside as his increasingly aging parents (and his increasingly forgetful mother) find themselves unable to care for him. I will need to unsheathe my sword for numerous battles to come.
But for now, and for at least a few more months, my son has a real, bona fide friend in school. And for once, I reshelve my other worries for another day, and simply revel in the fact that in this one instance, this one example, he gets to be just like any other kid.
November 18, 2010
Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist
Today’s guest blogger is Shivon, welcome!
The story behind ‘My Brain Wants To Go Home’
Diego refers to his body parts as if they are separate from him. Like when he is kicking my seat in the car I tell him to stop and then he repeats the command to his feet “stop it feet”, when he is hungry he says “my tummy is hungry’ etc…One Saturday a few months ago we had a super busy day, Lyric had a soccer game, D’s school had a carnival, and there was a street fair in our area. I was already pretty concerned at how Diego was going to do with all of the stimulation and even suggested to him that we skip his school carnival, but he wasn’t having that so we went on with the day. Lyric’s soccer game went well, Diego got to run around and really enjoyed watching his brother play. The school carnival was quite possibly the most crowded, loud, chaotic ordeal I had ever been to. I was overwhelmed, so I could only imagine how Diego felt. I asked Rickey if we should leave and he thought Diego was doing alright so we stayed. I also think that if I tried to rip Diego away from the cotton candy and shaved ice he may have passed out. I know he shouldn’t have that much sugar, umm but you try telling a four-year old he can’t have what everyone else is having all around him. *sigh* We only hung out for a little bit and then we headed home. Diego was on a major sugar high and I was hoping that once we got home the routine would help him a bit.
The street fair is a block away from our house and there wass no ignoring the music, food and people. Lyric and Diego begged me for an hour and a half to take them and finally I caved. We got about 1 1/2 blocks in and Diego just stopped. There was a girl doing this cool hula hoop thing and he just plopped his bum down on hte sidewalk and watched for a few minutes, mesmerized. I was a little concerned because that was out of character for Diego, so I sat next to him on the sidewalk and asked him if he was alright and my little boy looked at me and said “mommy, my brain wants to go home”. I gave Rickey the look, picked up my baby and practically ran home.
You could just see it in his eyes that he couldn’t take it all anymore.
There was never any question of what I would name my blog, his words said it all.
Shivon blogs at www.sonidoinquieto.wordpress.com
November 17, 2010
Last night I dragged my youngest child back to our local mall to pick up our holiday pictures (yes, I know it’s only the beginning of November, but it should be clear to all of you by now that I’m a planner), and even though we were smack in the middle of the “witching hour”, everything went smoothly. Although I maniacally tortured the poor woman at Picture People with multiple reprints, we were in and out of there in half an hour (THIS is why I go in November). My good fortune continued on our next errand as I was subsequently able to secure next year’s sweaters for photo shoots in under ten minutes (try finding anything red before Halloween, I DARE you). I even managed a slight detour to Starbucks and was able to convince Zach that just waving at Santa as we whizzed by would not preclude him from gracing us with gifts at Christmas (plus I told him Daddy would cry if he didn’t get to see Zach sit on his lap, and that was the ultimate decisive factor). All in all, I had those damn photos in hand, had knocked a few things off my holiday shopping list, and found a salt-and-caramel-laced hot chocolate MUCH to mommy’s liking (trust me, try it sometime).
Then I ruined everything by going home.
We were mere minutes from the warm mecca of my still Halloween-laden living room when I heard a slight, strange, guttural sound emanating from my youngest child’s mouth. I quickly slowed down, half turned my head, and asked him if he was okay. His muttered answer was unintelligible, so I scooted to the side of one of our neighborhood streets, flipped on the inside light both to see him better and to comfort him, and repeated my question. Zach just smiled and said “there’s a cough stuck in my throat, I NEED juice!”, and secure in the knowledge my son wasn’t choking to death, I reassured him he’d get it when we got home. I then put the car back into gear, turned off the light, and returned to the road.
Ooh mommy, bad, bad idea.
Immediately Zach screams “it’s dark, turn on the light”, which due to daylight savings time and the fact he rarely leaves the house after dinner, was the correct observation. I tell him in my SUPER-rational tone of voice that I can’t drive with the light on, which only makes him ramp up the volume even louder. I even inform him the police will pull mommy over and yell at her, which normally would solicit some type of compassion on his part, but he is having nothing to do with my excuses. It’s dark, and he wants to see the light.
Don’t we all.
I pull into the driveway, slide him screaming from the car, all remnants of our lovely afternoon together completely vanished. I carry him to the house but have to set him down to open the door as he is such a big boy now, but he refuses to cross the threshold. Apparently his attention has been captivated by the jack-o-lantern he’s studiously ignored since we both carved it (you know, the one which almost made me sever a major artery), and he’s decided it must get lit.
I decide I am SO in tune with that idea.
I yell for his father, because I know once I enter the house there’s dinner to throw together, two kids to get on the potty, one lunch to be made, notebooks and toilet successes to be recorded, meds to be dispensed (sadly, none for me), and even Super Nanny with her pretty charts just couldn’t do it all solo. Thankfully Jeff is already coming down the stairs to figure out what the crisis is all about, so I dub him “in charge” of Zachary, and make my way inside. I dump our treasure, field off two requests from Justin simply so I can take my shoes off, and hear the words “that’s disgusting!” belted out from my husband’s mouth. It seems tragically, that our surgically enhanced vegetable has got some nasty green going on inside of him, and he needs to go. With my youngest watching from the open doorway Jeff retrieves a large garbage bag, throws “Jack” into it, and rounds the corner to deposit him in pumpkin heaven.
Hah. And I thought driving home three blocks in the dark might scar Zach for life.
The trickle of tears turns to a torrent, with my son clutching his father’s leg and wailing “I WANT MY PUMPKIN BACK!”, and me locking eyes with his dad and conveying the message “this one’s yours, buddy”. Zach is inconsolable, so after I check on dinner status, get Justin out of the bathroom, and have the temerity to use it myself, I engage my brain and try to figure out how we’re going to get out of this one. Dinner time is often tough for Zach, reminiscent of any number of historical inquisitions. If the crying continues he won’t eat, then he’ll be up in the middle of the night hungry, then mommy will be tired.
Nobody likes mean OR tired mommy.
I switch places with Jeff and pick up my sobbing, snot-ridden son, who quickly asks “WHERE DID DADDY PUT MY PUMPKIN?!”. I realize the answer “the garbage can” will guarantee we’ll pay for at least another year of psychotherapy, so I don my mommy/teacher/blatant liar’s cap and cobble together a response.
“Honey, Jack got sick, so Daddy took him home to his mommy in the pumpkin patch”.
Tears stop mid-stream as I watch Zach processing my outrageous deviousness. He looks away from me as he always does when he’s thinking hard, then turns back to me with a slight grin and says “Get my doctor’s kit mommy. Jack’s sick. I’ll go to the pumpkin patch and make him better”.
I am scrambling now, because the allure of a good night’s sleep summons my creative side like nothing else in this world, and I look at him and say, “Well, it’s nighttime now, and Jack’s asleep with his mommy. We can practice on his brother Zach (a pumpkin unmolested by cosmetic procedures) in the morning.”
I hold my breath. The crying stops. He buys it.
So today, after securing my oldest on his own form of transportation, my youngest and I braved the early morning chill and “practiced” on sibling Zach. I am PRAYING this will appease him fully so that I’m not required to haul Jack out of our garbage can and somehow spirit him unnoticed to a nearby pumpkin patch, an outing which will not be reinforcing to his mommy, not one little bit. So far Zach seems content with taking his namesake’s temperature, assessing his heart rate, and checking his reflexes (this particular gourd is a bit lethargic), and after pronouncing his patient “cured”, he happily boarded his bus this morning. Since this kid retains things better than I do before a round of PMS I’m not taking for granted that he’ll forget Jack, but I’m daring to hope, and asking you to keep your fingers crossed for me as well.
And if this doesn’t work, you can bet my reward will be a lot more sophisticated than a caramel-laced hot cocoa.
November 16, 2010
Today’s Gratitude Attitude goes to Miss M, our Board Certified Behavior Analyist extraordinaire, for agreeing to provide our family with a dozen hours of expert Applied Behavioral Analysis techniques over the weeks to come. Although Justin’s come a long way over the years, there’s always room for improvement when it comes to behavior (isn’t that true for us all?), and we are thrilled to benefit from her expertise. To our delight, the divine Miss M has already made some suggestions in that arena that work both theoretically AND within the confines of an extremely busy family. We are very appreciative of her time and look forward to working with her over the next month!
November 14, 2010
It’s before dawn as we make our way toward Jersey Shore hospital, a familiar route because it’s near both Justin’s neurologist and the site of Zachary’s penis surgery when he was an infant (yes, I said penis). Jeff and I are surreptitiously sipping cokes, trying hard not to let Justin see us entertaining our version of a caffeine habit because it’s his turn to have a minor procedure, and he can’t eat or drink anything until it’s done. After a six month stint in which my son managed to contract nine ear infections (most on Friday afternoons, post-pediatric hours, of course), we have taken him to an ENT, and practically begged for tubes. After his recent rash of illnesses and an exam that revealed the smallest ear canals in the history of children, ultimately the begging turned out to be completely unnecessary.
The wonderful, autism-friendly Dr. M told us after the conclusion of our first visit just to figure out a convenient day for us and make an appointment, which I promptly went home and did. After ten minutes stuck on hold while being regaled with the virtues of ear tube surgery (clearer speech, greater listening skills, a better night’s sleep) I admit I was tempted to go for the two-for-one special. Ultimately, I remained mature enough to make this about my son, and booked a day in the fall after our pool would be closed. The concept of an improved night’s sleep continues to remain tantalizing.
I know we’re going to arrive at the correct wing of the hospital a good half an hour early, but our choices were either to place him in the stroller and kill ninety minutes in the waiting room, or try to keep a ravenous seven-year-old child out of our refrigerator. I figured if he went through every new and old DVD we’d purchased for the occasion I could always wheel him around the hospital, as long as I could avoid the cafeteria. Besides, if he made too much of a ruckus they might just let him back to intake earlier, a place I remember from giving birth to be loaded with televisions, pillows, and those really wonderful warmed-up blankets. After a protracted waiting period in which I see no less than three news stories about “Cigar Man”, our nation’s newest version of the garden gnome, we are finally called back by a friendly nurse who tells us it’s our turn. We whisk Justin by the coffee, tea, and abandoned-looking donut section and ultimately reach our destination, where I am thrilled to see those fabulous blankets await us.
Post-baby purge, those soft warm squares and a nice drip of morphine are almost as good as a spa day.
We weave our way through a triad of professionals, nurses, admin assistants, and eventually the anesthesiologist, who asks us the most intensive questions of them all. I am forced to recall my son’s medical history as well as my own, a conversation which at this hour of the morning I deem completely unconstitutional. We run through the litany of potential allergies, asthma worries, and heart concerns, and finally our gentle sleep doctor asks me if there are any other issues he needs to know about. I respond with what I believe to be a kindly and ironic “Nope, just autism”, a statement which does not even elicit a sliver of eye contact from him.
Oh well, so much for my attempts at humor.
Within minutes of trying to slip my son into the hospital’s air-conditioned version of haute couture the head nurse returns to wheel him away, reassuring me that he can keep his DVD player with him. She reminds us that the entire procedure will be over in ten minutes, and that someone will come to collect Jeff and me and take us to recovery.
Oh, that loaded word. Can’t seem to escape it wherever I go.
I kiss him lightly on the lips and tell him to be a good boy, and he is pushed to the door while thoroughly engaged in “Up”, oblivious to the fact he has left his parents behind. Jeff begins gathering our paraphernalia, but I remain transfixed, watch the sliding doors mesh with each other as my son vanishes to ether, and slumber. I never allow myself this ambiguous luxury, but for this one moment I permit myself to wonder.
What if instead of a surgery to diminish illness, this was a procedure to eradicate Justin’s type of autism.
I doubt I will see this happen in my lifetime, nor more importantly in my son’s. Millions of dollars have been devoted to cancer research over the course of the last fifty years, and although great strides have been made, people still succumb every day. Heart disease remains the number one killer, and despite numerous remedies, colic still rules the world of many infants and their parents. If we can’t yet conquer gas, I’m certain it will be many decades before we’ve seriously infiltrated the more serious manifestations of autism.
But just for a moment, I allow myself to wonder, to picture what our lives would have been like without this disorder.
What if there had been no frustration, no tantrums, no insidious, unpredictable rages.
What if his urge for repetition, that obsessive need for an order indiscernible to anyone else’s eye, were destroyed.
What if he had a true friend.
What if he could talk.
And I stop myself there as I always do, because after all these years, even in my mind, I still cannot hear his voice.
I mechanically begin to help Jeff forage for our stuff, abort my musings, and after a brief unplanned detour through the women’s changing room, which may be the most titillating event of my husband’s entire week, we resume our seats near the flatscreen. I have just enough time to tell my husband to watch tv so I can finish the last pages of my novel when the nurse is through the door, telling us he did beautifully, remains unconscious, but we are welcome to see him.
I hitch up our bags and cross the waiting area one last time, and stride into the hushed hum of recovery. Justin wakes up wild as I’d been told he and every other child does, but eventually, with our ministrations, he calms down. When I ask if we can take him home our assigned nurse asks us if he’s 80% back to normal, and hit with yet the second loaded word of the day, I simply smile and shake my head yes. Together we manage to strap him back into the stroller and return to our car, then slide him into his restraints. I climb in next to him, wedge myself in tightly between my oldest son and my youngest son’s car seat. He is whimpering but fairly complacent, and uncharacteristically still. He lets me take his hand, and permits my other to cup one of his ears while I press its mate against my shoulder. He actually turns his head slightly and raises it to kiss my cheek in one of his common gestures of gratitude, then settles back into my embrace. We remain this way throughout our journey, he, I’m certain, lost in the discomfort of his adventure, and me, lost in thought.
November 11, 2010
Don’t get me wrong. I’m actually rather grateful to be here, even though this developmental phase includes the word “no” in every sentence, the declaration of fear before every trip to the potty that I’ve come to believe is completely bogus, and of course, the screaming every time Justin even looks in the direction of a toy with which Zach is playing. Just to be clear, I in no way think that these behaviors are simply a manifestation of my youngest son’s type of autism, as none of these shenanigans are new to me. I had my kids late, got to watch my friends’ children make their way into the world, and on a few occasions felt they were a better deterrent to childbearing than my birth control pill. Over the years I’ve frankly come to believe that any child under the age of six is inherently a writhing bundle of “me, me, me”, just waiting to be tamed by his or her parents.
And now, at long last, it’s my turn.
I’ve picked up a number of disciplinary techniques over the years, some from my classroom days, many from studying how my friends dealt with their progeny’s transgressions. Since they’ve all turned out beautifully so far, I feel emulating their moves is a safe bet. I’ve cheered them on in their usage of “time-out”, helped a few construct fairly creative behavioral plans, and supported them when all else failed in their attempts at simple good old-fashioned punishment. I admit over the years I’ve been envious of their usage of “if-then” as a bargaining tool, a device I’ve been unable to put into play with Justin as his thinking is simply too concrete. But as Zachary has aged I’ve wondered how consequences would come into play with him, and have recently discovered the most wonderful bribe AND deterrent to undesirable behavior ever conceived.
His name is Santa.
I know. I have to be careful not to invoke his high holiness on too many occasions, as the threat of him only leaving presents for Justin if employed too often will eventually render him irrelevant. My husband and I reminded each other this past weekend to show restraint, and only “use” him when we’re really at the end of our ropes, when our battery of behavioral techniques has simply worn out. I promise Santa, we will be gentle.
But I will say this. That jolly old soul who needs to lighten up on the carbs is a powerful tool, and I’m going to be missing him greatly come January. Santa prevented Zachary from running around our house for the HUNDREDTH time yesterday in order to escape the dreaded potty, that same receptacle in which he’s been successfully and proudly peeing in for several consecutive weeks. The bearded one reminded my youngest son that he could indeed share his toys with his older brother and live, particularly since they were originally Justin’s in the first place. Hell, Old Saint Nick even got his lordship to put a string bean up to his lips, and although it was ultimately rejected, it was a start. Santa’s given me hope that eventually all of my son’s fruits and vegetables won’t ultimately come from a plastic bottle of V8.
So in case you’re feeling a bit “humbugish” this season, what with the plight of our economy and the equally depressing realization that you are no longer justified in eating your child’s “rejected” Halloween candy, I simply want to leave you with this thought, and hope it renews your faith a tiny bit in this time of year, if even for a moment.
Santa, my friends, really is magic.