January 26, 2012
Gratitude Attitude
This week’s Gratitude Attitude goes out to my mom, both for all her help with my kids, and for being brave enough to continue trying to teach me how to cook (we’ll get there!). Thanks for being such an important part of our household!
January 25, 2012
What Next
Muted light throws faint shadows on my son’s face as he watches the technician approach, a lovely, patient woman who has conducted this procedure many times before. She places what I’ve decided to dub the “EEG hat” on top of my child’s head with one movement, swift and sure, and just as quickly secures the straps under his chin that will hold it in place. Justin is startled into submission for a moment, then immediately reaches up to remove the offending accessory. I quickly push his hand down, look him in the eyes, and tell him “No Justin, you have to wear this for a while.” He looks back at me, clearly annoyed, but slides back onto the couch anyway with a look of resignation on his face. He is soon immersed in the antics of Nemo on his small screen, and remains for a time relaxed, and compliant.
He hates this, but he’ll do it for me. This is just one of many reasons why I adore this kid.
We make it through the requisite twenty-one minutes of searching for seizure activity, and almost make it to the big goal of forty. The tech isn’t allowed to tell us anything, but I’ve become gifted at reading their faces over the years. She’s only glanced at her pulsating computer screen briefly during our half-hour together, and there’s been no trace of interest or concern on her face. Unless she’s an award-winning actress on the side I’m pretty certain we won’t be receiving a call in a few days about how to control Justin’s seizures. I’ll have to wait the requisite seventy-two hours to be sure, but I think it’s just one more thing we can scratch off our list as to why his behavior has changed so much since Thanksgiving.
One down, eight bazillion possibilities to go.
Justin will begin to protest in earnest at minute thirty-three, so we relieve him of his “headpiece”, cleaning soapy water from over one hundred tiny electrodes from his face and hair. Having had enough fun for one day he immediately rises to leave, and rejects the toys I’ve brought to bribe him to stay. We still have to get through an appointment with the partner of the neurological pediatrician we started with, and my son’s desire for departure at this juncture is not a good sign.
Fortunately my mom is here to help, and within minutes we are ushered into the doctor’s office, and asked to wait as he reviews Justin’s chart. My son is captivated by a scooter offering a multitude of buttons that generate light and sound, so I relax for twelve consecutive minutes (!), knowing my mom will take Justin back to the car to wait if need be. I dig through my purse for a working pen and the blank papers I shoved in there at the last minute for notes, and within a decent amount of time our doctor du jour enters the room.
Once the requisite medical exam is concluded and we are certain Justin’s reflexes are still excellent, my son grabs his coat, pushes my hand toward his bag, and heads for the door. I tell my mom I’ll see her when we’re done, and Justin beams his big “I’m getting my way” smile, and the two of them exit together. I settle back in my seat, and begin to answer questions about our family history that I can repeat in my sleep. I consider slipping something new in there just to keep things interesting, then recall that we’re paying a lot of money for this man’s time, and I need to be mature.
After eight years of these inquiries, this remains a difficult task for me.
Once we make it through the fact that nobody on either side of Justin’s family tree has anything spectacularly noteworthy, we settle into what I like to call the “closer” portion of the appointment. I know that in the concluding minutes of our chat, this learned physician will divulge all of the myriad random issues that could be contributing to the behaviors we’ve seen so exacerbated in our son over the last few months. Many will require rather painful, invasive tests. All are under a 5% chance that my child even has them, most a 1% at best.
None will have any real treatments to follow them up with whatsoever.
Over the years I’ve lost a great deal of my “star-struck” attitude where even the most celebrated practitioners are concerned, and I’ve learned to ask questions. Today I listen politely, take notes, write down statistics and long Latin names I’ll later be unable to reproduce for my spouse. When there’s a break in the litany I look him in the eye and ask a question I would not have broached the last time we subjected Justin to such a comprehensive exam, which was six years, and what seems like a lifetime, ago.
I ask him if there are really no treatments for these issues, why we should explore these avenues. I indicate that I’m heavily leaning against subjecting him to more intrusive procedures for which he’s at little risk, and even smaller potential gain. He seems only a bit surprised by my boldness, but then responds in a matter-of-fact manner that I can respect. “Some parents need to know the ‘why’ as much or more than the ‘what next’”.
And it strikes me that I’m no longer in the “hell-bent on why camp” anymore.
I should make it clear that I don’t believe this transition is part of a continuum. Should someone walk up to me someday, able to reveal the particular genes and/or environmental factors that created the autism in my boy, I certainly won’t turn away from that knowledge. I’d enjoy going to my grave knowing those particular genes’ names. It’s a goal.
But knowing the origins of the disorder in my two boys no longer consumes me. What I really want is a plan. Are there new medications out there now? A new diet whose creation will torture me at meal-times, but which I would happily implement for Justin? In other words, “what you got, Doc?”
We conclude our discussion soon thereafter and I gather my three bags and as many dozen toys to my chest, and begin my schlep to the car. I’ve tucked the paper with my chicken scratch scrawl deep into my purse, knowing I’ll discuss the possibilities with my husband that night, also knowing it’s unlikely that we’ll pursue any of them. I pay the equivalent of half a mortgage payment for my son’s EEG, feel gratitude that we can do so, and walk laboriously through the lobby with my stash. I reach the double doors, and use my elbow to push the glowing green button for egress. Other than the thought of impending lunch, there’s only one issue on my mind.
What next.
January 22, 2012
And the Answer is…
“Mom, why does Justin say “eeee”? Zach asks me as he colors a wooden snowflake bright red, a hue he says he chose because it’s “cheerful”. “I don’t know honey, that’s just the way your brother talks because of his autism”, I respond. I help him uncap a green marker to make the snowflake more “Christmasy”, and I think about how much I’d truly like to know the answer to that particular query. It’s been seven years, thousands of hours of speech therapy, and an equal amount of money spent on trying to elicit some consonants out of my eldest son. I’ve been a (mostly) good girl all of these years, and truly, I’m ready for someone to end the mystery for me. I look down at Zach and realize he’s ceased his artistic attempts and is looking right at me, as if I’d merely forgotten the real answer, and my response to him is imminent.
He’s turning five. The questions are starting to come.
It’s funny. So far, we’ve had elaborate discussions on what constitutes a soul, what transpires in heaven (Mommy, Daddy, and Justin are there, friendly dinosaurs are residents, and there are a lot of snacks). He’s asked me why the sky is blue (the answer for which I had to look up on the internet and now no longer recall), but he hasn’t peppered me with many questions about autism. Zach does know that it’s hard for some people with autism to talk and to make friends. He also understands that autism is the reason his big brother plays the same scene in a movie a trillion times on his DVD player, and that Zach needs to see films on our “big screen” if he wants to know the ending of anything. So far, except for loudly declaring that a few kids at POAC events have autism, it hasn’t been a huge topic of discussion.
I’m pretty sure however, that it will be soon.
Zach’s starting to really notice Justin’s behavior, how he’ll frequently seek affection from his parents (which immediately prompts Zach to do the same, no imitation issues here), but remains mostly solitary in his activities, despite our numerous attempts. He’s asked if Justin could play Monopoly with us, and seemed mildly disappointed when his brother made it clear that plastic cars and thimbles hold no interest for him. Our bowling activities have placated him a bit, afforded Zach the opportunity to cheer his brother on and hug him when he’s victorious, allowed him to feel connected to his sibling. On the rare occasion when Jeff and I have been able to get them to run around the house, Zach has thrilled to the chase, and solicited Justin’s help in conspiring against his parents. Recently there have been more opportunities for connection, for fairly “typical” sibling interaction in our house. Zach has loved them all.
But I’ve noticed that now his questions are becoming far more difficult to answer, and his requests are of a nature I can’t reasonably fulfill. Last week, it was why Justin doesn’t have playdates with his friends from school, and why he wouldn’t sing a song with him. Yesterday ended with a half-hour long discussion as to why Justin can’t sleep in his little brother’s room, with my explanation about completely different schedules (and Mommy losing her mind if they woke each other up) clearly constituting an inadequate response. He’s beginning to want more from their relationship, and he’s starting to wonder why he’s not getting it.
I personally am envisioning a great deal more chocolate in my immediate future.
So far it’s been fairly calm seas between the two of them, with the occasional appearance of mild skirmishes over toys the only time sibling rivalry has marred the surface of their relationship. Every day, Zach still asks how long it will be before Justin gets home from school. He continues his unsolicited acts of generosity toward his elder brother, leaving him books and toys at his place at the table (ones he no longer has interest in of course). According to Zach, Justin is still his best friend.
And I just hope, as we transition into the next phase of Zach’s childhood where questions and requests will dominate our days, that this brotherly love will remain.
January 18, 2012
Time Out
I hear his belly-deep chuckle as I’m clearing dishes from the table, a sound I haven’t been graced with in weeks. I dump dirty dishes on the counter-top and walk quickly to the living room, where I see my eldest boy, cocooned in blankets on the couch. He is laughing out loud at the same segment of a video on his DVD player that he hasn’t seen in ages, one that was once a favorite. He looks up at me to share his joy, another act I haven’t seen since before his illness almost a month prior. His eyes leave mine, return riveted by the children playing Simon Says on the small rectangular screen.
I come closer to the couch and he smiles at me again, a clear and concise invitation. I sidle into his now considerable bulk, and wrap the blanket around me so we are tangled up together. Justin rests his head on my shoulder and squeezes my knee, the tactile tricks he uses to communicate his excitement that I’m sharing the experience with him. I place my arms around him and hug him with all my might, then graze his slightly flushed cheek with multiple kisses.
Briefly, thoughts of our recent trials together fall away. Episodes of his increased, and at times desperate need for order, disappear. Memories of the fierce pinching that conjure up his toddlerhood fall away. The bouts of sobbing with no apparent antecedent, the most difficult symptom for me to bear, are momentarily forgotten. He’s truly present. He’s happy. We’re together, having a simple mother-son moment.
And I relax, a reflex I’m still trying so hard to relearn, and simply revel in him.
January 17, 2012
Respite Repealed
“We’ll make it” I tell myself, even though Justin is thoroughly kvetching and we haven’t even concluded one entire game of bowling. My eldest son has become slightly more agitated as the afternoon has worn on, but thankfully remains mostly compliant. He dutifully takes his ball to the special ramp designed to help him aim, and afterwards embraces me with one of his trademark bear hugs as he waits for the machine to reset his pins.
We’re about to commence the tenth and final frame as he fingers release his round captive, and without warning, the board that whisks the pins away slams down, preventing his ball from concluding its course. Given his post-illness decline in behavior over the past few weeks I expect anger, or at least frustration, but he seems relieved. He knows he can expect a trip to the snack machine now, and as we make our way back to our assigned swivel seats and my wallet, I admit I am relieved too. We seem to be in the home stretch, another outing successfully conducted despite his recent regression.
Then, he sees the french fries.
We’re back in the car, my heart pounding, Justin sobbing relentlessly, my coat askew. I manage to snap the last buckle on his vest restraints as he tries to pinch me again. I thwart his efforts, and as usual, the anger in his eyes recedes. He grabs a hunk of hair on both sides of my head, and drags me down for his signature “sorry” kiss.
Then, I’m sobbing too.
I wipe the tears from his cheek, hand him a juice box, and my boy’s tears subside. After firmly closing his door I open mine, and heave his bag and my purse onto the front passenger seat, because I literally don’t have the energy to walk around to the other side of the car. I allow myself to recall what just happened, to play it out in my mind so I can relinquish this episode to the past.
It’s the smell of fried potatoes that calls his attention, because I’ve maneuvered my body so it blocks his view of her plate, but to no avail. The woman at the table next to us has ordered this carb concoction, and its odor wafts over to us. Justin sees it, and Justin wants it. Not his own plate. Her plate. And he wants it now.
Despite his protestations, I manage to usher his four foot three frame, the length of which now measures up to my collar bones, back to our table. He is fighting me the entire way, wants out of his seat three, four, five, half a dozen times. I switch his shoes, throw on his coat and mine, and somehow grab all of our bags with one hand while holding onto his jacket with the other. We make several aborted attempts to exit the alley. The look in his eye is clear, focused, and devoid of what I know as the essence of my son. He wants that woman’s food..
He is relentless.
Somehow with me practically dragging him we make it out, past the stares of the manager, the families enjoying their time together, the elderly bowlers whom I know are regulars. A few have looks of disgust on their faces. After eight years I’m usually immune to the glares, particularly as they fortunately do not occur often. But today, I want all of the patrons to disappear. I want to disappear.
It crosses my mind that someone might even question my own behavior with my son.
I slide into the driver’s seat, wishing I retained the same measure of control over my child as I soon will with my car. I grab a wad of napkins left over from some local fast-food restaurant and wipe my own face, take a deep breath, and let the “replay” leave my conscious thoughts. There’s still a good six hours left in the day. There may be more skirmishes ahead.
I need to conserve my strength.
I allow myself one more brief moment of reflection as I feel Justin’s foot in the small of my back, his way of indicating to me he wants me to turn on the radio. After four weeks of this on-and-off behavior, I’m not even angry anymore, I’m just sad. I think of all the work we’ve done over the years. The behavior plans with his teachers and specialists. The home program, the outside speech therapy which we are fortunate to be able to provide him. The relentless adherence to ABA protocol that has helped him so much. The medications we’ve agonized over giving him, the same ones that have provided him, and our family, such a long respite from suffering. I think about how along with the moments of joy and the immense progress he’s made, I have to honor his true path and record these moments too, because these periods rear their ugly heads cyclically. They are one truth of my son’s type of autism too.
And they need to be heard.
I turn the ignition key, remind myself that we have a plan. There will be tests conducted over the next month. There will be at least several more visits with two separate specialists. Our family, Justin’s school, and his therapists are taking action. All we can do is continue to love him, and stick to our guns with disciplining his behaviors. Beyond that, all we can do is wait.
And I hate it.
January 13, 2012
Gratitude Attitude
This week’s Gratitude Attitude goes out to Aunt Deb, for some wonderful reminiscing and for just being fabulous all-around; and to my “little” brother Erik, for being the best Jedi Zach’s met so far, and for knowing me so well. Thanks to all!
January 11, 2012
Family Ties
At first Justin brushes by my little brother, barely gives him a glance as he makes his way across the kitchen to the family room, intent on a destination known only to him. I’d hoped for more recognition on Justin’s part, although my sole sibling only makes it up for a visit about once or twice a year. Since I’ve been too afraid to try a plane ride with my eldest, they really don’t know each other very well. Still, they had forged a true connection this past summer, Justin standing at his uncle’s side, occasionally looking at him to share the joy of a particularly engaging scene on his DVD player. I’d thought he’d at least be happy to see him, would show some sign of pleasure at his presence in our home.
And just then, my oldest child stops, pivots, runs back to my brother, puts his hands on either side of his face, and looks at him with the most intense gaze I’ve ever seen.
I take a few steps toward them, careful not to disturb their time together. Justin smiles up at his newly discovered relative, then looks at me. Again, he looks at my brother, then regards my face. He jumps up and down with joy, emits his standard “eee” for excitement, then disengages from my brother’s embrace. The moment is over. But I know in my mother’s soul that I’ve just witnessed a connection made, a cognitive leap in my boy. He may not comprehend exactly who this tall man is to him. He has however recognized the similarities in our faces, the features we share that make our blood tie unmistakable. On some level, I am certain Justin gets that we “go together”.
And he also gets that this is one more person in his life who loves him.
I can’t prove any of this of course. If I directed him to his iPad he wouldn’t type out “this is mommy’s brother”, or show his comprehension in any other form. I know he understands this man is family just the same. And while I’m thrilled that he’s made this connection, it just makes me wonder how much else he knows that he’s unable to share. This awareness of the gap between what he understands and my ability to discern that understanding remains a sore spot for me, although I continue to hope that chasm will continue to close. He’s made such progress with his new technological device in school, and it’s finally begun to spill over a bit into our home. I’m hoping that his need to connect through the written word will increase over time. All we can do is give him opportunities, and wait.
I put those thoughts aside however, because at the moment we’re engaged in a rare opportunity in and of itself- my mother, my brother, my husband and my children all in the same space, willing and able to interact with one another. It’s about as rare an occasion as a solar eclipse, or my going an entire day without consuming chocolate. I need to get back into this moment, to recognize its incalculable worth, and just enjoy.
And as I watch my oldest son return to his uncle for a second round of hugs, I do just that.
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 4, 2012
Dear Diary…
Dear Diary…
That’s how each segment of my play starts, a script I wrote this summer when I was able to summon the maturity to ignore my pool and whatever Game of Thrones novel I was reading at the time. It’s the story of three mothers and their experiences with their autistic children, all of whom hail from extremely diverse backgrounds, and all of whom are raising children with autism who reside on various parts of the spectrum. One woman is a young mother struggling with her marriage as well as her son’s diagnosis; one is a rather devout Jew and single parent; and one is a college professor raising adopted autistic twins with her life partner.
I’ll confess, the lesbian is my favorite. She’s quite sassy.
I’ll also divulge to you that this past summer nobody was more surprised than me that I could write fiction. My last foray into this genre was a rather pathetic short story penned so long ago (the 80’s) that it is most assuredly residing in a landfill rather than a recycling bin. The truth is, the idea to write the play at all was in part born out of a desire to create a fundraiser for Parents of Autistic Children (POAC), a local and fabulous autism organization, and in part to promote another endeavor I’ll be speaking about at a later time. Frankly, I was simply thrilled I could do it, and equally honored that POAC agreed to let me produce it for them.
I’ll be announcing dates soon, and there may be multiple venues (as to my non-faux-humble surprise a few “real” theaters actually seem to be interested) but I’ll wait to formally announce until everything’s set in stone. I’m hoping to put on a few shows here in Jersey, and a night or two in DC, the city I consider my second home. Of course, when Tina Fey and Amy Poehler beg me to be a part of such a monumental event, I’ll graciously concede, and I’m certain Broadway will open its arms to me as well.
Tina and Amy might have a small part in that too.
When the “tour” is over, if it turns out that someone other than my husband liked my play, I plan on making my script available to anyone who’d like to use it as a fundraiser as well. There will be some rules (it’s a play about autism, of course there will be rules). Any individual interested will have to show proof of where the money’s going (I don’t want to find out down the road my writing contributed to someone’s granite kitchen countertops). Said individual will have to promise to read my words as written (if you have some differing opinions to express, write your own play). Although this isn’t a deal-breaker, it would also be lovely if whomever appropriates the script mentions I wrote the thing, and informs me as to how much money they banked for their organization.
And if you’re thinking you don’t have time to put on a play to support your favorite autism organization, trust me, this little theatrical contraption couldn’t be easier to produce. There’s no memorization, no dialogue, and no sets. Hell, there’s really no movement required at all. If you have a living room, a few chairs, and three women who can read, you’ll have yourself a free fundraiser.
Coupled with my goal of relaxing more in 2012 is my desire to throw things out to the universe a bit more, and I’m so excited to give “the theater” a try. I’ve already begun to learn about important things like building permits, fire codes, and soundboards. I’ve acquired my fabulous autism-mom/actresses, Dr. Robyn Leitner, and Babette Zschiegner from Peace with Autism. Most importantly, I’ve begun shortlisting songs for us to walk onstage to (most of my husband’s suggestions were inappropriate, I sense a contest on Facebook in the imminent future). So join me in April (dates TBA), and support POAC, a wonderful autism organization.
I promise, you’ll laugh a little, and you’ll cry a little. Thanks in advance for your support!
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.
