January 9, 2012
Reprieve
SLAM!!! I turn in time to see my eldest boy conclude what I know was the long arc of his hand originating behind his head, and ending with contact on what I fervently hope is not a now-broken DVD player. I rush to the living room to tell him not to slam things, which usually is enough to break him from his reverie and redirect him. This time however he just looks at me, with a remoteness in his eyes and an expression I can only describe as “devoid of Justin”. He attempts to do it again. I grab his arm and pull him to me for a hug, and I literally feel the tenseness in his body dissipate, and the essence of my boy return. He graces me with one of his heart-stopping smiles and returns to the DVD player, the episode seemingly forgotten. I return to my dishes in the kitchen, but I know it won’t be long before I hear that ill-begotten slap, and will abandon my scrubbing once again.
I just want this to stop.
Justin’s autism symptoms (or perhaps more accurately, his OCD symptoms), seem to ramp up considerably after either an antibiotic, or an illness, or both. He battled a fairly mild ear infection just a month ago, one which eventually required his usual dose of amoxicillin, and left him healed. It also left him with what I refer to as “extras”, including an increased need for order in his life, frequent head-shaking, and a new manifestation, the slam-dunk of a hand on any object in close proximity to my boy. These behaviors usually come and go in cycles, fortunately with many long and peaceful interludes in-between. This time unfortunately his returning health has also brought back the long-forgotten urge to pinch, as well as awkward body movements, and I know it’s time once again to explore why this is occurring.
And trust me, we’ve been here many times before.
Jeff and I decided to take him to the ATN at Philadelphia CHOP (Autism Treatment Network though Autism Speaks), in part because he hadn’t had a full evaluation done in a few years, and in part because I felt they’d be the best practitioners to help us decide which specialist to approach next. For anyone considering using any of the ATNs in their area I’ll share that I thought it was a very comprehensive evaluation, with the best part by far being our experience with the developmental pediatrician.
Any time a clinician associated with autism examines my son, offers me excellent advice, and exudes any amount of warmth whatsoever, I am hooked.
After my husband took my exhausted son out to the car so I could conduct the rest of our family history in peace (after seven years dealing with autism, it’s become rather lengthy), I felt like I could really concentrate on what she was saying. She told me straight out after observing him that his new movements could be indicative of a seizure disorder, and although the chances were rare, we’d need to investigate further. We discussed the fact that he might just be reacting to the Risperdal, the medication we put him on a year-and-a-half ago to help eradicate the last of his aggressive behaviors. Dr. B also said that all of these aberrant incidences, the return of the pinching, the head-swinging, and the unpredictable slams, could simply be a new manifestation of his autism.
We’ve been there before too.
Our knowledgeable developmental pediatrician informed me that a pediatric neurologist would be our next stop, and visits would probably include at the very least an MRI and an EEG, none of which have been conducted on my boy before. She must have seen me grimace because she offered me a heartfelt “I know, both are going to be extremely difficult for him”, an offering of empathy that made me want to hug her.
I restrained myself.
I also took away from our conversation that I needed a very specific type of neuro ped, one well-versed in seizure disorders, movement disorders, and tics. Dr. B gave me a list of names (all of whom would decline taking Justin on, but at least I left the office with a plan). Through my husband’s supernatural research skills (literally, the man can find ANYTHING) we’ve since come up with a practitioner who seems to fit the bill, one who even had a cancellation for ten days after our initial call.
I’m sure many of you will agree that’s better than hitting the lottery.
Within a week’s time we’ll be gracing the doors of this new practice, and unless it’s an absolutely horrible experience, I’m sure we’ll return for any number of fun tests and consults too. They will be difficult to watch. They will be much tougher, for a myriad of reasons, for Justin to endure. But endure he will, because he is such a good boy, and we’ll get through all of it and hopefully come away with some answers.
I recall, as I closed up my purse and gathered a half-dozen toys scattered around the tiny CHOP exam room to make my return to our car, that the feeling accompanying my relief for having a plan was rage. Rage that perhaps something invisible to the naked eye incites these symptoms in my son. Rage that at times he’ll stop in the middle of an episode, his face will crumple, and he’ll sob his heart out for no reason. Rage that he and our family have come so far, and still have to endure these periodic regressions.
Rage that my boy still suffers.
And yet, infused with the rage remains that thin filament of hope, the thread that has been with me since the beginning, and stubbornly refuses to be broken. The research has come so far in the past few years, physicians are so much better informed, that perhaps for Justin, we will discover some relief.
And along with a lot of baggage, I unwind that thread with me as I head back to my car, and him.
January 3, 2012
Just Relax
(Gratuitous photo of my boys.)
Ah, the silence.
There’s nothing quite like getting your kids off to school after a long vacation, then sitting down to write about said vacation (even if your husband is snoring gently in the background because your “office” is in your bedroom). I’m honestly not sure which of us was happiest this morning. It could have been Zach, all afire to tell his teacher about Coco Key, the water resort that is his new favorite place on earth. Maybe it was Justin, who literally took my hands and jumped up and down for joy at 6:00 AM when he saw his backpack lounging casually in the corner of our living room. Perhaps, instead, it was their very tired, but very relieved, mother.
Hell, who are we kidding. It was totally their mother.
Winter break is by far the most challenging of all the vacations we face around here, and even though Justin’s time home has been reduced to about four weeks a year (sending silent blessings right now to the institution of private education), ten consecutive days is a long time to fill. When my eldest looked at me with traces of utter disdain upon realizing I’d brought him to our local arcade for no less than the third trip in a week, I knew it was time for him to return to school. Our family made it through however, despite the fact that Justin’s ramped-up OCD behaviors made life particularly challenging (try shadowing your eight-year-old fourteen hours a day, and you’ll get my meaning), and the devastation of realizing that I ruined Zach’s life by buying him the wrong toy at our local aquarium.
Yet again, good times.
There were some really great (and really interesting) moments however, perhaps not ones to commemorate in my scrapbooks, but ones to remark upon just the same. I actually broke down and cried at our McCafferty family Christmas when both of my progeny decided to engage in particularly crappy behaviors during dinner at exactly the same time, making my sister-in-law respond in kind because she’s never seen me lose it before (yet recovering enough to remember to ask for a piece of cherry pie for the ride home). There was the moment in church where my four-year-old announced his extremely heartfelt “Merry Christmas!” to the entire congregation, a good three minutes after everyone else had committed to the holiday, and well into the minister’s sermon. The decision to leave a fairly agitated older child at home with his father resulted in my being able to sit like a grown-up for four hours at my best friend’s house, silently reveling in the fact that one of my children was in their basement with his cousins, unattended by a parent, and it was FINE. The latkes and brisket were excellent, but the uninterrupted conversation was fabulous.
And last, but not least, there was Coco Key.
My dear friend Babette, future author of a wonderful autism travel book called “Traveling with Your Autistic Child” that I’ll be writing about shortly, and founder of Peace with Autism, planned her eight-year-old son’s birthday party about an hour away from our home on the Friday night of New Year’s Eve weekend. Typically, my first inclination upon receiving such an invitation would be “not a chance in hell”. First and foremost would be the fact that I’d have to find the resort in the dark at rush hour (and even with a fancy GPS, that’s not always a given). Then there’s the reality that Zach’s most impulsive time of day happens to be at the extended “witching hour”, and the possibility of my losing him in the water park was high. Of course, being forced to wear a bathing suit at the end of a month devoted exclusively to carb consumption really seemed almost too much to bear.
But then I reminded myself this was for my kid, and I should suck it up.
So, we went. Once I realized I could actually tell my child which color water slide to throw himself onto each time because he can talk, I ceased my pre-hyperventilating mode in a heartbeat, and sat back and just thrilled to Zach’s joy. I didn’t speak to a single adult (except the large lifeguard who put my son in time-out for running, which was perhaps the first time I’d seen my son intimidated by a grown-up), and it didn’t matter. I was calm. I didn’t worry about forgetting to shave my legs. I had fun.
In case, you’re not getting the full import of this, I was relaxed with one of my kids.
In general things have eased up around here over the last two years, but perhaps the last person to relinquish learned behaviors may be me. The truth is, I have two young children with autism, and things are always going to be somewhat difficult around here. Justin becomes particularly challenging after illnesses. Zach is literally testing us CONSTANTLY, and sometimes, he’s winning. It will never be easy.
But it’s better.
Usually my New Year’s resolutions are abandoned by January 5th (or earlier), and include being nicer to my husband (it’s a goal), a repudiation of sugar (not going to happen), and a commitment to carving out more “me time”, which doesn’t occur either. So this year, I’m reducing my future achievements to just one simple word, one I haven’t really engaged in since my eldest was born. It won’t be easy, but I’m certain my elevated blood pressure will be appreciative.
This year, come hell or high water (or both), I’m going to relearn how to relax.
September 6, 2011
The “I” of the Storm
Perhaps the hundredth or the thousandth hiccupping sob escapes from Justin’s lips, and I attempt once more to comfort him, but to no avail. We are stretched out together on my friend’s amply cushioned king-sized bed, me attempting to explain to my son that we can’t drive home in a hurricane, he imploring me with his eyes to try anyway. This is our second night in what I’ve come to call “captivity”, and despite having recreated his room as much as humanly possible with drawn shades, white noise, and his own sleeping bag and pillow, my eldest is having nothing to do with my choice of sleeping arrangements. I wipe away his tears once more and he pushes away my hand vehemently, and I take a hint, cover him up once more with his fishy throw, and quietly leave the room.
As I cross the threshold into the lighted hallway I recall how I’d wondered a few weeks ago if Justin’s aborted sleepover at Grandma’s was due to his routine being changed, or that fact that his mother wasn’t in residence with him. I shuffle slowly into the living room, dead on my feet from not having slept much the night before, fingers crossed. I no sooner reclaim my perch on the sofa when I see the blur of my son running past, with pillow and sleeping bag in tow. He clutches his treasures with one hand, and with the other shoves me toward his shoes, utterly indifferent to the pelting rain and strong winds buffeting the house from all sides. I gently redirect him back to the bedroom, and he sobs again in despair as we return once more to do battle. This time I don’t permit him to push me away and he finally relents, allowing me to rub his back and sing to him as his sleep medication finally takes hold, granting him release from his torment. I kiss him gently on the forehead and ease myself off the bed, and after slowly slipping the door back into its frame I once again return to the relative comfort of The Good Wife.
At least I have an answer to my question. He wasn’t missing his mommy at Grandma’s.
The decision to escape Irene with my children came with some trepidation, particularly as it seemed prudent to leave my husband here to hold down the fort, which meant I’d be traveling solo with the boys. Jeff and I went back and forth about what would be best. Finally, the inherent threat of flooding, coupled with the thought of a prolonged power loss, made me decide to flee. Justin doesn’t do “Amish” well, and the batteries in those DVD players would only last so long. Seeing as this situation could result in a bored autistic child being trapped without electricity for the better part of a week, we gratefully took family friends up on their offer to stay with them. We were very fortunate in that we had several offers to accommodate us. The one including the generator won.
The adventure started out well enough. The people we stayed with are family without the actual blood connection, and we’ve raised our kids to consider each other cousins, and the adults are viewed as aunts and uncles. Despite a large age difference all three of my friend’s children pitched in to keep Zach occupied, and he reveled in the attention he doesn’t get from his brother at home. Over the course of our stay my smallest son was able to attend his first Bar Mitzvah bash (Mazeltov!), sleep in a bed other than his own for the first time in his young life, and even find out what it’s like to have a roommate. He ran around that house and bonded with those boys perfectly, so much so that he would later declare he’d prefer to live there, and that my presence wasn’t required. Zach was enthralled with the concept of “big brothers” who played with him, and reveled in every minute of our stay.
And then, there was Justin.
I’ve gotten better over the years at somewhat disconnecting from his angst at times, because if I hadn’t, I might have drowned in it. I’ve learned to identify which reactions are an offshoot of autism for Justin, and which are simply the kvetching of a boy who’s bored and would prefer to do something else. The latter, and sometimes the former, are generally not tragic. I’ve figured out how to redirect him most of the time, to cajole him to stay at the beach more than seventeen minutes, or convince him he must indeed stay at my sister-in-law’s for Thanksgiving dinner. As he’s grown older it’s become easier to witness his unhappiness, particularly as with maturity (his, not mine), more options to rectify each situation have been unveiled.
But what I witnessed with my son this past weekend was no cousin to kvetching. It was pure, and unadulterated, suffering.
I should mention at this point that the home where we stayed could not be more welcoming to children. It was important to my friend to create a haven through which her kids could entertain, and they do this very well. Their house has been a sort of sanctuary for us, an “anything goes” locale, which is a treasure in a home where autism does not rule. If there was anywhere on earth Justin could have felt comfortable to reside other than my mother’s, this was it. And no matter what we tried, it simply wasn’t enough.
For the twenty-odd hours we were there that he was conscious (I counted) he cried, exhibited OCD-like behavior I hadn’t seen since his last serious illness, and he paced. His was a body in perpetual motion, unable to self-regulate, frantic for escape. I literally watched my son retreat into himself, with sporadic attempts at connection with those around him. He was completely and utterly bereft at having to relinquish his routine.
I couldn’t help but be struck by the dichotomy of the situation. One boy being cared for mostly by other children, out of my sight for hours (!), and perfectly safe. One boy who would literally have done anything for a room with carpet the color of sand, and stars shining from the ceiling. Often I find I’m immersed so much in our version of “normal”, that I forget just how different Justin’s childhood experience truly is from other kids.
This weekend, I was not-so-gently reminded.
Of course, it all worked out in the end, because truly, there was no other option. Justin woke once in the middle of the second night, but as I held my breath he heaved his body up, saw that his mother was next to him, and thankfully immediately slid back into slumber. We were able to make the trip home on Monday, a three-and-a-half hour journey that included my first ever solo pit stop with both of my children. Through sheer boredom and a desire to banish children’s tunes from my CD player I even began teaching Zachary French, and I now believe he is more fluent than I’ll ever be again. After inching through the streets of Princeton I learned that Zach would like to attend that institution (“it looks like a castle, Mom!”) and made a mental note to add calculus and Mandarin to his curriculum. It was a trying voyage but we made it home, and Justin’s joy was beautiful to behold.
Of course Zach immediately threw a semi-tantrum and demanded to return. Seeing as how my friends had once contemplated a fourth child, it was tempting.
We’ve all recovered by now, but I realize I have some planning to do. Through hard work and sheer tenacity (infused with a healthy dose of desperation) we’ve conquered Justin’s aversions to eating, sleeping, potty training, and refraining from expressing his displeasure with teeth marks. I’ve got my sights on Disney for next year, and of course that whole “he needs to live somewhere else someday” issue forever looms over my head. We’re going to have to teach my boy that no matter where he rests his head at night, at least for now, he’ll eventually return home again. It seems my next battle is at hand. Thankfully, with things going so well here, I think I’m actually up for trying another sleepover, someday.
As long as it’s not tonight.
July 7, 2011
Hiatus
It’s been three weeks since school concluded for my boys. With said finale came one excited child, namely my eldest who understands that this hiatus means trips to our local beach, boardwalks, and playing in our pool. It also brings one bereaved child, who is already mourning the loss of friends having the audacity to move on to kindergarten and leave him behind. There have been twenty-one days of sand and sea, moments such as when Zach declared he was “happy to be me”, joy, despair, and multiple trips to Starbucks by mom. I won’t say their mother enjoyed every minute of it, but it was lovely to have them home, and it will be equally lovely to see them return to their respective classrooms, which gives mommy an opportunity to wend her way back to sanity.
As I mentioned on Facebook the other day, I’m referring to my new best friend, summer school.
I happen to be a “balance girl”. I am grateful for the chance to be home with my kids all these years, but have never felt compelled to spend every minute of their consciousness with them. These particular children crave structure, and I find we all do better, mommy included, when our days are broken up into pieces. For Justin, this means attending the school, (and seeing the teacher), he loves so much. As for Zach, his education is an important part of the schedule, but so is down time with his toys, and an immersion into that coveted world of imaginative play. As far as I’m concerned, a little dark chocolate and at least seventeen consecutive minutes to read a good book are a definite requirement to a fulfilling day, even if those goals are carried out while sitting on a sidewalk waiting for a bus to return.
Yes, I’m still easily pleased.
While none of these crucial “components of happiness” were in evidence over hiatus, I will say I came to two very important realizations. Even though my “me time” had clearly gone on vacation without me, it became evident just a few days into having both kids around the house just how far they’ve come, both in terms of their behaviors, and their emotional states. Justin has displayed great taste in deciding to sleep past 4:00 AM again, and with a full night’s rest his OCD antics have dissipated, and his normally joyful soul has returned in full force.
Once Zach stopped waking up at night sobbing that he missed his friends (it had been only twenty-four hours since the last day of school, his is an exceptionally sensitive soul), he too became excited by the promise of what those empty, schedule-free days had to offer. Once their mom accepted that putting away six folded mounds of laundry and running errands would comprise the entirety of my personal satisfaction for the month, I got into the groove as well. For the most part, things ran smoothly with few hiccups. Our entire household was generally happy. It was as good as it gets here.
I realized it was the very first time I could honestly say summer hiatus was fun.
The second realization I’ve come to is that the years have begun to take their toll, and I am no longer as my dear friend so aptly puts it as “zippy” as I used to be. My kids require a singularity of focus, and at the end of a fifteen hour day in the company of small children, I found myself completely devoid of energy. I used to be able to grab seven hours of sleep and conquer the world, but at the end of these particular days, I found brushing my teeth to be a struggle. I’ve discovered I had to let things go for a while, like abandoning my cuticles and postponing the reading of a number of bloggers I admire. At least with the latter I tried, often propping myself up at the computer after the kids were tucked in, wondering if attempting to read these writers’ work was such a great idea as my vision blurred.
For a short time, I was a very bad, bad, bloggy friend.
It seems my body is telling me to slow down a bit, which isn’t the greatest of timing since I have a four-year-old, but I’m going to give it a try. I live in the moment more (particularly now that the moments are more pleasant), and I’m figuring out how to say “no” to people, which hasn’t been easy for me. I’m attempting to read more, a staple component of my happiness, and perhaps only multi-task three things simultaneously instead of a dozen. Finally, I know that I’m only able to contemplate this shift now because my kids are in a really good place.
Scratch that. Let’s say, in general, they’re in a great place.
I tell people constantly to take care of themselves. Now that the chaos of autism has quieted a bit in our household, it’s time for me to take heed of my own advice. And as my beautiful boys board their buses, I think I hear a lounge chair calling. I’d like it to know I hear it’s siren song, and at least for a short time, I will obey.
And I hope in your own way, you can join me too.
June 8, 2011
Alphabet Soup
It’s Friday afternoon, and I’m trying really, really hard to suppress my irritation as I drive, and losing the battle miserably. I’m on my way to Justin’s new neurological pediatrician with husband and boy in tow, unhappy because we went to the wrong office, and now we’ll be late for our appointment. Justin had his intake at their facility in north Jersey months ago, but somehow Jeff and I both missed that this practice has two offices in the central part of our state, and now I’m cursing under my breath that I didn’t check the website more thoroughly. I look at my car clock once again, and sigh. I placate myself that getting Justin in and out of the first office, for the most part, was easy. Except for the fact that for the first time ever my eldest was scared in an elevator, which prompted him to launch his seventy-pound frame into my arms in the hopes I’d carry him out of it, we’re still okay. I’ll need a chiropractor immediately, but we will be okay.
We’ve switched clinicians in part due to that waiting room incident, but also because my husband and I have come to believe that Justin has a dual diagnosis of ASD and OCD, and we’re hoping to have fresh eyes assess the situation. The secondary diagnosis of obsessive-compulsive disorder has been largely dismissed by Justin’s practitioners in the past, all of whom have thought that his rigid adherence to ritual is simply a facet of perseveration, a central tenet of autism. His father and I think it may be something more.
Last month we were fortunate to have the BCBA from Justin’s school in our residence for a few hours to assess his “maneuvers”, the rotation of DVDs/CDs/picture frames/shoes/plush toys that consumes him, and drives us crazy. This gifted woman with decades of experience with children on the spectrum validated our concerns, agreeing with us that some of his actions were a function of the repetitive aspects of a spectrum disorder, but the duration and severity of his focus indicated something else was amiss as well. Jeff and I subsequently figured it was worth the hell of finding a new doctor, and made the calls.
We pull into the parking lot of the hospital complex a mere three minutes late, and since at our first visit this woman seemed to be the paragon of compassion, I figure she’ll let our tardiness slide. We whisk Justin into the waiting room and check him in, and my husband makes sure the receptionist has our new insurance information while I attempt to keep Justin from barging in on a surgery. Our new neuroped takes us almost immediately, which further endears her to me, and I quickly tote goody bag, boy and purse into her well-lit and child-friendly examination room. Not only is there space for the four of us to sit, but there appear to be actual “autism-interesting” toys for Justin’s perusal as well, and once again I’m grateful we put him on that long waiting list last summer. I find myself almost giddy at how simple the entire affair has gone.
As I’ve said before, it doesn’t take much these days.
At our last visit we broached our concerns about the possibility of Justin’s sporting a second disorder, so we spend a good portion of our appointment time discussing how he’s doing at school (beautifully), his behavior at home (save for the constant house reorg, wonderful), and the numerous interventions we’ve attempted. My husband and I share with her the opinion of our fabulous BCBA-for-a-day, and reiterate we’re aware of the difficulty of culling out the perseverative aspects of his behaviors from those that might be purely of a compulsive nature.
Eventually, we stop talking, and listen.
Our learned practitioner concurs with us that dual diagnosis is difficult, and perhaps at the end of the day, immaterial. She says that from what she’s heard it is probable he has both disorders, and she’s willing to state it for the record. We discuss our “plan of attack”, which begins with increasing the dosage of his current medication, then perhaps exploring others if this intervention fails to mitigate the situation. We are given time-frames and parameters for using this approach, and she throws out the names of other potential medications. Our doctor gently informs us that things might get worse for a while before they get better, if they get better. We are reminded that none of this may work because he has autism, as well as OCD. Finally, our new physician gently tells us that it may take months to see a change, if any, because finding the right SSRI for OCD is a complicated task.
Hmm. Ambiguity in a treatment plan. It seems we’ve been here before.
As Justin begins to tire of the toys he initially found so fascinating, his father and I simultaneously wrap up our little tete-a-tete with Justin’s doctor, whom I’d recommend unequivocally to anyone (and that doesn’t happen often). We gather our stuff, thank her, and as Jeff heads to the exit with our boy, I tell him I’m going to make our next appointment in person, so I don’t have to remember to place the call next week. When I finish reconfiguring the chess pieces of our summer schedule I have an appointment secured, and head rapidly back to the exit so we can attempt our return home prior to rush hour.
In the distance I see Jeff struggling a bit with Justin’s safety harness, and I heighten my pace because I know how frustrating those buckles can be, and frankly, I’m just better at it. I know I have almost an entire minute alone to process this dual designation before I’m reunited once again with my family, and, I quickly assess my emotional state (I’ve become expert at this over the years). Unbidden as I walk, the tune from the “alphabet song” enters my head. There is a slight variation on a theme this time with the words “ABCD, ASD, HIJK my son has OCD” inserting itself into my fatigue-ridden brain.
No, I’m not sure where that came from.
I continue on to the car, and realize I’ve suspected this outcome for years, am far more interested in whether or not this knowledge can help alleviate some of his more troubling symptoms than whether or not he has a second “label”. So many recent studies seem to suggest that a variety of disorders comprise one big happy family, with ASD, OCD, ADD and others perhaps fighting for purchase on one or two chromosomes. Perhaps we’ll add more letters to his “alphabet soup” along the way, perhaps not. At the end of the day, what he has is irrelevant to who he is, and how much he’s loved.
And as I leave the parking lot after a brief skirmish with my spouse over which direction to turn (he was right, I know, it’s shocking), I remind myself that on the bad days, and yes, there still are bad days, that this absolute truth is what I need to remember most.
April 10, 2011
Resurgence
SLAM!!!!! Zach and I jump a bit as we’re sitting at his art table, and I quickly smile both to hide the fact my heart has briefly stopped, and that I am completely exasperated. It is, perhaps, the THOUSANDTH time Justin has slammed the closet door this afternoon (okay, slight exaggeration, but it FEELS like it), and my patience is frayed to its ragged, disintegrating ends. Zach asks “What is Justin doing, Mom?”, and I reply “organizing his toys, hon”, but secretly, I admit to myself I really have no idea. While the lion’s share of the playthings from the closet have been exiled to the garage recently due to Justin’s escalating OCD, he has still managed to find something in there to rearrange- namely, his plush toys. Although the positions we have discovered them in have been mildly amusing to me and his father, our overriding emotion upon witnessing this returning obsession has been dismay, and sadness.
For so long, he had been doing so well.
Over the years, as I’ve spoken to people about my eldest son and his neurological disorder, I’ve found most conversations end up centering around his lack of speech, and how difficult that must be both for him and our family. While I don’t want to minimize this deficit (believe me, there are many days I wish the child could just TELL me why he’s rivaling my PMS-state), it certainly has not been his greatest impediment to functioning in the “real world”. Even the aggressive moments that plagued us, his therapists, and his teachers over the years were scattered enough to be “livable”, until the end of his sixth year when the incidence increased so greatly we sought the assistance of medication for him.
Although the non-verbal aspect of his autism and the pinching have both been considerably daunting, the single greatest component of his disorder that affects his life the most is the OCD/ perseveration. It’s what clued me in at his six month birthday that something was amiss (when your infant chooses to spend his entire day spinning a faux fish bowl throughout the hardwood floors of your home, it’s time to contact that developmental pediatrician). His predilection for rotating objects, rearranging photos around our home, or hiding one shoe from a pair in absolute obscurity (his mother’s personal favorite) prevent him from engaging in more appropriate pursuits, effectively limiting his world to a minimum of activities.
There are mornings when I almost have to carry him out of the house to get him on the bus, and not because he doesn’t want to go to school, because he’d live there and marry his teacher if he could. It’s simply that the random pattern of paper slips, and oft-ignored Xeroxed reminders on our chaos of a kitchen table are not arranged to his liking, and he can’t leave until they are. Perhaps it is that I have erroneously placed a new photo of he and his brother in the family room, rather than mid-way upon our living room bookshelf at an angle that is just so. After all these years I still cannot discern the precise patterns he is striving for, and his penchant for order is enslaving him. There are many days his closet machinations would leave him in tears if we weren’t constantly redirecting him, in our own attempt at ritual.
There are as many days that little face, desperate in his desire to get it “right”, engenders tears in me as well.
The thing that brings me and his father most to despair, is that the OCD comes in cycles, is stealthy in its resurgence. It’s only been the last six months or so that it’s escalated to this level once more, and once again, it doesn’t seem to be precipitated by anything in particular. In the past, it seemed to be high fevers that heralded the return of the full body tics and desire for order that would consume him for a few months, then dissipate. Since he had those glorious ear tubes inserted last fall there have been no fevers, no antibiotics, no palliative measures taken to address the always-accompanying upset stomach that perhaps were the triggers to his obsessive state. Despite all the progress he’s made socially, academically, and emotionally, this bane to our existence, this barrier to his happiness, is simply back.
Of course, we’ll address it to the best of our abilities. We’ve found a new neurological pediatrician with whom we feel more comfortable (and yes, if you’re wondering, she has a waiting room). Jeff and I felt she really listened to us at our first visit, was open to the suggestion we’ve been hearing from several professionals in Justin’s life that he might have a dual diagnosis of both autism, and actual OCD. She’s willing to think out of the box a bit with medications, comprehends the limits of a therapeutic approach, and understands we have thoroughly explored the tenets of ABA to alleviate his suffering. There is even the possibility of enrolling Justin in a study someday, if we collectively feel it will be to his benefit. We’ll return to see her in a few weeks time, and I feel confident all options will be evaluated, that he is in good hands, that my boy is receiving the best care possible.
But I can’t help wondering, if despite all our attempts to quiet the sometime chaos of his beautiful mind, if this is as good as it gets.
April 2, 2011
World Autism Day- Free To Be You and Me
“Justin, for the love of God, PLEASE SIT DOWN!” I implore my almost eight-year-old, as he thrusts his body through the narrow space between the front seats of our SUV, desperately trying to free Sheryl Crow from her imprisonment in our car’s player. We’re leaving for speech therapy ten minutes late as it is because his school bus was delayed, and I’m irritated by the thought of the impending traffic I know we’ll soon encounter. I’m really not in the mood for this OCD ritual today, the current “compact disc musical chairs” that has replaced shoe/toy/DVD rotation in his devotions. I’m especially chagrined because I’ve trained him to like MY music, allowed him to pick from a carefully selected musical portfolio prior to every trip, and none of these choices has ever encompassed children’s tunes.
Now that this new obsession has begun every CD in the house is a target, and unfortunately some songs from long ago have come back into play. I finally cajole/coerce him back into his own spot, manage to shove his hands clutching fistfuls of circular disks through the slotted holes of his harness, and rush back to the driver’s seat. Before we exit the driveway I reach back and say “Give me what you’ve got, Justin”, and as our fingertips brush briefly against one another I feel the cool, pliant plastic of his selection slip into my hand. If there’s any justice in the universe, it will neither be the Wiggles, nor Barney.
Thankfully, it’s “Free to Be, You and Me”. If he’s going to torture me with kids’ songs, at least he possesses good taste.
I smile as I insert his choice into the yawning maw of the DVD player, because these melodies summon pleasant childhood memories for me, hours spent in my room hiding from my little brother, afternoons playing with my dollhouse and grooving to vinyl. I’ve always thought of “Free to Be, You and Me” as the musical equivalent of the literary phenomenon “Everything You Ever Needed to Know You Learned in Kindergarten”, with its magical messages of tolerance, acceptance, and inclusion. I remember my mother telling me what a big hit it was at the time, particularly as it was introduced during an era of “peace, love and happiness”. I have to grin as I listen to the soothing baritone of Alan Alda reminding us it’s okay for boys to play with dolls, followed by the dulcet notes of Marlo Thomas imparting her message that girls must break free of stereotypes, and follow their own non-scripted dreams. There are other fundamental lessons imbued into these lyrics, monumental concepts such as crying is okay even if you’re male, we all deserve respect no matter what our skin tones, and one remaining especially current in today’s world, don’t believe everything you’re told on television.
Reality TV has made the latter particularly relevant (yes, I mean you, Rock of Love’s Brett Michaels).
We manage to make it through lights that usually halt us in our tracks, and as I check the time I realize we might only arrive a few minutes later than our intended hour. Justin is rocking out in the backseat to Don’t Dress Your Cat in an Apron, and I ponder how far we’ve evolved since this musical melange’s initial debut, how much kinder the world has become, and yet how far we still must strive to go. Since this record’s release I’ve witnessed gay military personnel win the opportunity for disclosure, as well as the right to celebrate the ritual of permanent union in many states. I’ve watched women not only destroy but redefine the concept of the “ceiling”, as they’ve attained the highest positions both in business, and in government. Men have begun to take their wives’ names, as well as their traditional roles as caretakers of children. Finally, two years ago I sat with hot cocoa in hand, forced the boys to snuggle next to me, and reveled in the beauty of a man of color finally ascending to the most elevated office in the land.
There’s still so far for all of these groups to go, barriers yet to transcend, prejudices to puncture and dismiss. We’re certainly not completely the “land of the free”, just yet. But I do believe we’re getting there. And I think for those of us who raise children considered unique, special, differently-abled, now it might just be their turn, their time for the earth’s attention.
Their turn to have their differences celebrated, not denigrated.
Their turn to be treated with compassion, to consider kindness as their norm.
Their turn to shatter stereotypes, to be regarded as men and women, boys and girls, with gifts to share to a far more gracious world.
Their turn for free to be, you and me.
There’s a land that I see, where the children are free
And I say it ain’t far to this land from where you are
Take my hand, come along, where the children are free
Come with me, take my hand, and we’ll live
In a land where the river runs free
In a land through the green country
In a land with a shining sea
And you and me are free to be,
You and me.
It’s our Fourth Annual World Autism Awareness Day!!!
Don’t forget to turn your porch lights blue tonight!!!
THANK YOU FOR YOUR SUPPORT!!!
March 9, 2011
Hard of Hearing
He’s uncharacteristically quiet, my boy, as we wend our way through the busy streets of our town, mid-afternoon on a March weekend. Justin’s been “sniffling” for the past forty-eight hours, although everything else about him until today has remained the same- happy, energetic, despondent when I refused to take him somewhere fun after school (“no Justin, not EVERY day here is Disney”). Until recently there has been no evidence of fever, none of the lethargy or crankiness that signals something else is brewing in my son’s body other than spring allergies, or a mild cold. Due to his silence however my “inner voice” is now clamoring to get him checked out, and when it calls, I obey. We are fortunate enough to have a great clinic associated with his pediatric group that’s open both days at week’s end, and although the wait-time might be akin to when I acquired my driver’s license in DC, I sense we are required to pay a visit.
Normally this would be the fifth or sixth time I’d make this run during cold and flu season, but ever since Justin had his ear tube surgery five months ago, he has managed to avoid most illnesses. There was a quick cold a month or two back that he was able to banish over the course of a week-end (you know your autistic kid loves you when he permits you to shoot saline water repeatedly into his nostrils), and since then, nothing. I figure it’s his turn now, as the wonderful ENT we patronized told us the tubes wouldn’t eradicate his chances of contracting the infections, but should certainly minimize them. It did, and I can’t even say I mind that he’s ill, or regret all the plans that need to be altered, because he’s been predominantly healthy this winter.
Plus, although far from having completed med school (high school biology not withstanding), after six years of chronic inflammations I seem to be gifted at discerning the exact day his internal infection will have migrated to his unreasonably slender ear canals. This “second sight” precludes the repeat doctor visit that I so resent (“I know I’m just a housewife, but that ear infection is coming, JUST GIVE ME THE DRUGS NOW”). It also precludes the high fever that is often so devastating to my eldest son, frequently elevating his OCD traits to new and unimagined heights, rendering him captive to the indiscernible orchestrations of his mind. I am confident after we do our time in the waiting area that the earliest signs of inflammation will be found by the doctor’s otoscope, and that we will be happily sent on our way to Walgreen’s with an anti-biotic.
As I’ve mentioned before, it doesn’t take much these days to make me happy.
He’s an angel in the waiting room, periodically checking out the other patients while striding back and forth along the hardwood floors as if he owns the place, the former an action he would not have indulged in six months ago. By arriving here five minutes before our appointed time we’ve managed to subvert an entire herd of people I’m certain have the same designated appointment as we do, and I allow myself a brief congratulatory “yay mommy!” as we are called back to the examining rooms in less time than it takes me to shave my legs (unless it’s winter, then all bets are off).
Within minutes our on-call pediatrician makes his debut, and I sigh with relief as I recognize him, as this guy gets that Justin will not be sticking his tongue out willingly any time this century. I also like him because he actually listens to patient histories as reported by tired, cranky mothers, without even a nuance of condescension anywhere in sight. He asks why we’re here, and I tell him I have a hunch Justin’s garden variety cold or allergies has morphed into a full-blown invasion of his ears, and I need him to check them out. I tell him he had tubes inserted in the fall, and his avoidance of illness since then has been remarkable. He smiles, and tells me before he examines my son that he just wants to look through his chart, and opens up a tome of such great width it could be the sequel to War and Peace.
It takes him a minute or two to peruse his brethren’s collection of illegible scrawls, then without lifting his eyes from the chart says “he’s had so many ear infections every year, I’m surprised you didn’t have the surgery much sooner.”
Seriously, I am WAY too tired for “judgy ped”, particularly since said fatigue will make me prone to a rather snappish retort. Since you haven’t given me the scrip for those drugs yet, I’m really hoping this isn’t directed at me. I silently tell myself to summon those Pilates’ breaths, and wait.
To my immense relief, the dreaded “JP” has not reared its ugly head. He simply goes on to say he’s surprised I wasn’t advised to do this sooner, and I respond that I was too. I love Justin’s practice, have kept him there even though the hours have been decimated (it would be so convenient if he would just contract his illnesses between two and four, Tuesdays and Thursdays), because his physician is wonderful. There’s only one primary doctor and one alternate, and they’ve tolerated his hissy-fits over the years with grace, and didn’t even bat an eye when he ripped a swath of wall-paper the size of Texas off their waiting area wall (the nurse said they’d been planning to redecorate anyway).
To be fair to them, each year, when his incidence of ear infections crept up from three or four to an even half-dozen, it was always going to be the “next one” that would prompt the ENT referral, and there never was a closer. The only reason we entertained the idea of implants last year was due to his working on his eighth consecutive infection in under six months, and I was desperate to MAKE IT STOP. I pleaded my case, they did the math, he was referred. End of story.
The truth is though, I think I knew at least a few years before this past fall that he needed this intervention, and I didn’t insist upon it. This is unlike me, as I’m usually “Mademoiselle Argumentative” when it comes to his educational plan, therapies, medications, or his right to engage in leisure activities within the real world. I just didn’t listen to my nagging inner harpy who so often is correct, even if she doesn’t have a medical degree. I won’t be flagellating myself on this (after all, I was fighting just a few other concurrent battles over the years, I wasn’t that much of a slacker). But the truth is, I knew before we turned the corner to this decade that I should have been more aggressive, even with those impressive diplomas eyeing me haughtily from the one surface unblighted by my son’s wall-paper perseverations. I didn’t listen to my gut, and I could have prevented a great deal of angst for my family, and most importantly, a great deal of discomfort for my child.
And after the good doctor checks Justin’s ears and willingly hands me that precious blue slip of paper with its priceless chicken scratch, I remind myself that Oprah is (always) right. Heed that woman’s intuition, and summon that inner warrior for your child, whenever you can.
January 5, 2011
Role Reversal
We’re going on seventy-two hours of unprepared “imprisonment” (our forecaster said three to six inches of snow, not thirty-six inches of snow), and the natives are beginning to get restless. We’ve run through every new Christmas toy in the house, every old, abandoned plaything in the realm, and Zach has filled-in the pages of at least two dozen coloring books in his increasing boredom. Jeff and I spent half an hour getting them into snow gear for the ten minutes they played outside (Justin rejected his boots and gloves for sneakers and bare hands and I conceded, another Mother-of-the-Year moment brought to you by the makers of Cabin Fever), and after icicles began to form on both of my sons’ faces we returned to the relative warmth of our home. I’ve organized three closets and repaired four photo albums that Justin dismantled in March (spring cleaning and OCD-forced chores not being my forte), and I’ve been eying the Tupperware drawer for a day now.
I really, really, really need to get out.
We went through something similar last Christmas, but the circumstances were decidedly worse then. Last year mother nature deposited enough snow that we lost the last three school days before vacation was supposed to begin, which meant that Justin was home, with no camp or school to attend, for seventeen consecutive days (but who was counting?). That first week he had no new surprises with which to entertain him, and my days were punctuated by him dragging me frequently to the front door with shoes in hand, and his subsequent whine and tantrum when told “no, mean mommy can’t take you out during a blizzard, Justin”. I saw such maturity in him during the course of this particular storm, was thrilled to see him simply drop his shoes on the ground when I showed him the snow banks he could see through the sliver of unfrosted glass at our front door. He really “got it” this year, understood his parents weren’t torturing him on purpose, and found ways to amuse himself that didn’t require the constant pull of one of my body parts.
How’s that for looking at the bright side?
Eventually however, even Zach tired of his holiday loot and forays into imaginative play (and grateful as I am for it, mommy was tired too), and I could see him searching for something, anything new, to occupy his mind. After a few dozen stories (and even more pretzels) he finally sidled up to me, looked me in the eye, and made his latest demand.
“Mommy, you be Zachary, and I’ll be Mommy-Kim”.
I thought to myself, this should be interesting. Guess I’ll find out if he hears those frequently muttered curse words after all.
“Okay Mommy”, I answer in my approximation of a little-boy voice, “Nemo just told me he’s REALLY thirsty, and I need to go potty NOW!” (when your potty-trained pre-schooler starts to backslide on his bathroom regime, is it really so bad to tell him his favorite fish will die of thirst if he doesn’t pee in the proper receptacle? I think not).
Zach responds by grabbing my hand and whisking me to the living room coffee table (?!). Within seconds I gloriously save his finned friend and half of the Atlantic Ocean with my pretend stream while my son yells encouragements of “Yippee! Bravo!”, and my favorite, “Zachy, you saved Nemo’s LIFE!”.
Yes, I’ll do anything to stop buying diapers.
Over the next twenty minutes I learned I’m a nicer mother than I thought, although my terms of endearment are rather nauseating (I’ve got to come up with something better than “sweetpea” or “honeypie” sometime soon). I made my almost-four-year-old feed, bathe and dress me, tasks he undertook with unbridled joy in a sing-song falsetto voice (I really need to take a look at that too). I repeatedly commanded him to “HUG ME!”, to the point I swear I saw the flash of an eye roll as he wrapped his arms around me and said in a slightly exasperated tone “Zachy, you’re alright, no more crying”. An attempt to solicit two “Grandma brownies” post fake-lunch was met with a fairly patronizing remonstration of “no sweetie, your belly can only hold one at a time”, and I was flatly denied the right to see The Polar Express in its entirety. I worked that little bugger to the bone until the “real” bath/book/bed hour approached, at which time it was clear that role reversal was over, and sleep was an undesirable future activity.
Well, to clarify, just for him.
As Jeff and I slipped him into the crib he will soon outgrow, we slid briefly back into character as we said our goodnights. Zachy reminded me “mommies don’t let monsters into the house”, and I told him to “sleep tight and avoid those bedbugs”, an issue that’s taken on a whole new meaning to anyone living in the tri-state area. Play-acting was over, it turns out I don’t yell as much as I think I do, and apparently my son is pretty happy with his lot in life. I need to remind myself sometimes, perhaps many times, that perfect isn’t required here, not even close. Justin’s happy. Zach is happy. Here, within the comfort of our close-knit, and this week slightly claustrophobic world, everyone is doing their best. It will have to be good enough.
And at least for today, it is.
December 7, 2010
Riptide
Rip. Yell. Repair.
That’s pretty much been the state of affairs in our house with Justin since the spring, when a succession of illnesses felled him and the OCD component of his autism came back in raging force. This scenario was particularly difficult for us to adjust to given that we’d spent a few months in what we liked to call “Camelot”, a period in which both boys were usually sleeping through the night (my favorite part), Justin had almost completely quelled his aggressions, and my youngest had made so much progress one of my best friends mock-accused me of faking his autism to make my book longer.
Yes, he’s really autistic. Yes, I have the report to prove it. And yes, we’re still friends.
We knew immediately that the compulsive aspects of Justin’s disorder were back in full form because he unfortunately began exhibiting those frustrating body tics again, the ones in which he shakes his head back and forth so hard I can only imagine whiplash would be a gentler outcome. This time they only lasted for a few weeks, a boon for which both me and his father were grateful. We’ve tried several different medications over the years and dabbled in the world of biomedical alternatives, but after our son has suffered through high fevers, these tics always seem to be the remaining unwelcome guests in our house.
Autism is just such good fun.
To be perfectly honest, I was so grateful to see the swaying leave so relatively quickly that I failed to really notice how a few other unpalatable activities were left in their place, such as the need to tear to shreds anything imperfect within a five-mile radius (hence why my pediatrician removed her remaining wallpaper and painted her waiting room pastel pink and blue), as well as my son’s desire to leave any location outside of his home in under thirty minutes. We subsequently sailed into summer which is always our best season here, and got caught up in a last-minute switcheroo of schools for my oldest, in which the inherent drama of the change took us well into September. As I’ve mentioned before, this has been a REALLY good year for all of us, and so I chose for a time to focus on the positive and ignore for a few months that my son has become “Captain Destructo”, and an episode of “Cake Boss” (yum!) lasts longer than any of our outings.
Denial is a wide, wide, river.
Throughout early fall the realization that these issues have not improved has finally caught up with me, and I acknowledged to myself it was time to exit Shangri-La (okay, OUR version of idyllic) and get back on the ABA horse and ride. I also admitted to myself that part of my reluctance in trying to “fix it” revolved around the fact that I’ve been at this for seven years, at times have handled the majority of his behaviors on my own, and I’m just damn tired.
Thankfully, “Miss M” has come to our rescue.
One of the benefits of my son attending his new school is that they have several Board Certified Behavior Analysts in residence, all of whom actually make house calls. On the day they accepted him I put our names on the waiting list, hopeful that we could at least minimize these two issues that were still plaguing us almost daily. Within two months we rose to the top of the list, and “Miss M” made her appearance at our home for her “get-to-know” you session. She was able to leave me with advice on Justin’s first issue immediately, namely the destruction of any paper or plastic product that offended his eye, and I quickly implemented her counsel.
I realized that intellectually I knew what to do with him to reduce this behavior, but I’d been hung up on the fact that due to laundry/”cooking”/potty training/keeping the second child alive I hadn’t always been able to confront him immediately after he altered something, and that had kept me from making him fix things. Once “Miss M” assured me that the important factor was to force him to repair whatever he destroyed, make said repairs highly annoying (I’m good at that part), and stick to my guns even if the renovations took place six hours later, I knew what to do. I’m happy to say we’ve seen a lessening of destruction, a fact which probably saddens Zachary because he LOVED to tattle on him.
Autism or not, they’re still brothers.
His second and most daunting issue, his desire to leave the premises in the amount of time it takes to watch a sitcom, will be more difficult to handle, but “Miss M” is confident. I’ve shared with her that part of the problem is Justin’s outgrown many of the activities that made him so happy over the years, because although he’s autistic, cognitively and developmentally he’s often peer-appropriate. Frankly, the museums for kids under six and most local playgrounds just aren’t doing it for him anymore. He would kindly prefer to go to Great Adventure every day, and if I’d let him, frequent the section of terrifying roller coasters I refer to as the place where mommy will undoubtedly stroke out. When it comes to adventure, this kid shows no fear.
So, in an effort to discover some new activities that Justin can do when he’s both seven and seventy that won’t kill his mother, we’re decided to give bowling a shot, and we’ll be implementing a timer to show him he’s not allowed to leave after just two frames. I’m eager to see how this event will go, given that we’ve attempted this type of field trip once before when he was five. That day I spent the better part of his classmate’s birthday party chasing him around from pinball machine to pinball machine, all in a desperate attempt to keep him there long enough to sing happy birthday to his friend and eat some cake.
Hell, I had it on good authority it was chocolate with REAL buttercream frosting. Hyperactivity be damned, this girl was going to have her cake AND it eat too.
We’re trying the bowling lanes mid-week, and I just have to say that I’m so appreciative that someone else will be there with me to do the literal heavy lifting, as I’m certain Justin will find this activity as entertaining as the teeth cleaning where mommy forgot his favorite videos (yes, that has actually happened). I’ll let you all know how it goes, wish us well.
And I promise, no matter what happens, no jokes about striking out.
