March 6, 2014
It seemed so simple. A family of four sledding through snow, taking turns, waiting patiently for space to clear at the bottom of a big hill. An ordinary tableau, one unfolding on other snow-laden hills across New Jersey, delighted children and adults reveling in nature’s splendor. It seemed so simple.
But to our family, it wasn’t. To our family, this was huge.
We’ve weathered plenty of storms here in the garden state, have been able to get Justin outside on occasion, even convinced him making a snow man would be fun. However in the past decade I had yet to be successful in getting my boy on a sled, that staple of childhood many of us enjoyed and anticipated with great glee. For years, I couldn’t even get my eldest to wear the requisite snow pants. Sometimes, he didn’t like the feel of the boots. There was also the shunning of the gloves, the hat, and the refusal to get into the car in all his finerie. Despite his love of anything that moves, my boy was having nothing to do with a piece of plastic that slid down a hill.
Justin was an absolute trooper. He trudged quite a distance from the car to where a bevy of families gathered, never complaining once. He kept his gloves on while I encouraged him to hold on tight, and conquered his mountain not once, but twice, with the hint of a grin playing on his face during both trips.
At the conclusion of his last venture I asked him if he wanted more, and his response was an emphatic headshake “no”, which I honored with a return to our still-warm vehicle. We left Zachary to the splendor of snow with his father, trudging heavily up the slope to the parking lot, with at least his mother feeling victorious.
We tried something new. My eldest son liked it. And I would have thought this entire endeavor complete folly even a year or two ago.
I’m not one for New Year’s Resolutions as I generally break mine about six days in, but the one I’m about to propose I heartily embrace. I need to remember to always stretch my boy, because he often surprises me. I don’t want him to miss a thing. And today, he didn’t. Today, our little family of four simply had fun, no drama involved.
And for that, I am grateful.
February 24, 2014
This past Saturday evening I had the luxury of having a girls’ night out with a dear friend at the annual Parents of Autistic Children (POAC) gala, a celebration of fifteen years of their service to the New Jersey autism community. I was deliriously happy to get out of my house (this winter has taken its toll in more ways than one, ask my poor scale), and an event with parents of children with autism as well as autistic adults themselves was something I’d eagerly been looking forward to for weeks.
In addition to good music, good food (a pasta appetizer bar!) and even greater company I always seem to come away from this evening reenergized, more able to focus not only on the issues my two children on the autism spectrum are experiencing, but on their accomplishments as well. And in addition to eating and dancing the night away, everyone in attendance spends a good part of the night bragging about their kids’ successes to people who “get it.”
Frankly, it’s a fabulous perk of the night, right up there with those addictive chocolate-covered strawberries Eagle Ridge always serves at the end.
As my friend Babette and I settled into our table I prepared myself for POAC Executive Director Gary Weitzen’s annual speech (he never fails to make me cry at least once), searching through my night purse for a pen to take notes as my memory (and many other things) aren’t what they used to be. As usual, with his words I was rewarded. Gary did a wonderful job outlining the myriad ways in which POAC, which is the largest provider of free autism training and education in the entire state for both teachers and law enforcement officials, also provides a myriad of free recreational events for families.
He also recounted a moving anecdote about his wonderful adult son Chris, regaling us with his desire to hear his then four-year-old child speak just one single word, a wish thankfully granted. Gary went on to inform us that for the past decade-and-a-half POAC had been building a parachute for families, and that now their focus would also include job and residential opportunities autistic individuals over twenty-one. As always, POAC is always looking both to improve their services, and to plan for the future of our children.
I have no doubt they’ll come through for all of us.
The night’s speeches were capped off by a moving slide show featuring autistic children and their families at various events, as well as the volunteers who single-handedly make POAC such a successful autism organization. Traditionally this hails my second crying spectacle of the night, and for once in an effort to preserve my mascara I permitted myself to turn away and take a good look, a really good look, around the gorgeously decorated room.
As I scanned the tables I saw fierce and Congress-celebrated autism advocate Bobbie Gallagher rubbing the shoulder of her beautiful adult daughter Alanna, and couldn’t help but recall how she’d helped me when I first moved to our town, assisting me in navigating the special education component of our school district. I watched as Simone Tellini (Gary’s right hand at POAC) was held rapt by the power point, and thought of the struggles she’d shared with me about her adult son with autism, how she’d moved mountains for him during a time when nobody really knew much about the disorder or truly seemed to care.
As I shifted in my seat I felt behind me the presence of Geoff and Roe Dubrowsky, two advocates who have advised politicians and served on every local, state and federal committee known to man, who also have an adult child on the spectrum. I truly looked around the room at one hundred and fifty people in their finery, all here to support one another as well as the organization hosting them.
I entered that room and saw it mostly full of strangers. By the end of the presentation, I felt myself to be an integral part of a growing, vibrant, and incredibly committed community.
I’ve been a POAC member since shortly after I moved here in 2008, and I cannot emphasize enough how much this organization has meant to my family, and to countless others in the state. They are a well-spring of information, and provide those all-important recreational events for families in a safe environment, where no child or adult is ever judged. I am truly grateful to them for their continued support, and most importantly for the friendships I’ve made there, men and women whose acceptance, kindness, and humor have helped get this family through some dark times into the light.
It’s possible I appreciate their humor the most.
Whether you’ve had the “autism experience” for over a decade as I have, you have a child who’s newly diagnosed, or you’re simply looking for a wonderful place to volunteer, I can’t recommend POAC enough. I’ll list their contact information below, and I encourage you to reach out, whether it’s to gain help, or to offer yours. We are a community unto itself.
And if you’re seeking a community who cares, you’ve found your home.
Contact POAC at www.poac.net
February 10, 2014
The call came as I was preparing dinner, straining gluten-free spaghetti through a colander for me and my youngest boy. I have to pause a conversation about Lego Star Wars to pick up the phone, and as I glance down I see it’s my mom’s cell, so I press “talk.”
After a brief greeting I ask her how Justin’s horseback riding lesson went, and I hear a slight pause, which my imagination rapidly fills in for me. I immediately worry that Justin doesn’t like this new stable, the one with the trainer who I’m hoping will get him to the Special Olympics this fall. My thoughts are no more dire than that.
What my mom says instead takes my breath away momentarily, shocking me as this has never occurred in the almost six years Justin has been riding. “He fell off the horse hon, but he’s okay” my mom reassures me, and then continues with “and damned if he didn’t want to get right back on.”
Knowing my boy, that doesn’t surprise me at all.
Apparently Justin’s horse was startled by another equine friend in the ring, and fortunately my son slid from the saddle right into the waiting hands of his trainer, with only the indignity of his bottom hitting the ground. In the seconds my mom contemplated whether she should risk going inside or not she said he simply stood up, grabbed his trainer’s hand and pulled her toward the mounting block. With the other hand he pointed straight at his horse.
My boy doesn’t need to talk to make himself understood.
Once more I make sure he’s okay, hear his excited “eeeeee” in the background as I wrap up my conversation with my mom so Zach and I can eat our carbs. I tell my youngest that Justin fell off his horse for the first time but wanted to get right back on. Zach responds that his brother is very brave, and I smile at him in agreement, telling Zach that I think he shares this same trait with his sibling. There is a request for the parmesan cheese I’ve forgotten to put on the table, and as I make my way to the refrigerator I am hit by the magnitude of what has just happened. My son has fallen off a horse. He didn’t cry, fuss, or try to leave. Instead, he got right back in the saddle.
The truth is, that’s what this family does every single day.
I have two children with autism, one severe, one mildly affected. To my everlasting pride (and relief) they are both safe, productive, and happy. I attribute this bounty in part to great teachers and aides, excellent therapists, an involved family, and of course, time and maturity. All of these ingredients have coalesced into a recipe for success, an outcome I am grateful for every day.
But if I’m perfectly honest, it’s falling down and getting right back up again that has been perhaps the most important ingredient in this family, a trait I’m proud to say we all share. I’ve seen this occur after time with Justin, whether it was watching him learn how to ride a bike, conquer an educational game on the computer, or, and most difficult for him, see him manipulate his mouth to form coveted consonants. This kid never gives up, and I don’t believe it’s a trait one can teach. I believe in him it’s innate, a force of nature which propels him on in all his endeavors, one I’m very grateful he inherited from his obstinate and purpose-filled parents.
Truly, the apple doesn’t fall far from the tree.
Soon I am being pestered for cookies from Justin’s equally brave brother, and my reverie is broken as I search for more carbs in our pantry. I’m asked often how our family has made things work, how we’ve managed to create a palatable existence despite the demands of an often difficult disorder. I am loathe to give generic advice to families as everyone’s situation is so different, but here is one universal truth I feel comfortable passing along. No matter what issue you’re facing, if you fall down from the weight of it try your best to brush yourself off, and keep on going. It is the one constant that has always worked for this family.
And my most heartfelt wish is that it works for you too.
February 3, 2014
The following paragraphs are a reenactment of the moment where I first seriously contemplated the fact that my eldest son Justin, then sixteen months old, probably had autism. I came to the realization during a conversation with my mother, a thirty year veteran of special education, after a recent trip to see her and my best friend had raised some “red flags” for her.
The rest of our much-anticipated visit to New Jersey transpired uneventfully. There were a few sporadic moments of connection between all the children, and thankfully there were no major meltdowns from my son, but somehow I couldn’t wait to return to the enclave of our home in Virginia. For me it seemed as if the “cat was out of the bag,” that the conversations and worried glances of my friends and mother had combined forces to legitimate all the nagging fears I had been wrestling with concerning Justin. What I didn’t know when I left was how much my friend shared my concerns, and that she had felt compelled to call my mom to discuss what she’d seen and how things didn’t feel right. My mom unfortunately echoed her fears, and a day or two later with a heavy heart called me to express her worries.
“Hey, sweetie; how was your trip back?”
“Not bad. Justin slept for 100 miles and only cried for three. He just redeemed himself for his entire first year of travel.”
I heard a slight chuckle on the Jersey end of the line, and my mom replied “Great. Glad to hear it. I thought maybe we could talk a little bit about some things I saw when I was visiting.”
Silence ensued, and I envisioned my mom clutching the phone anxiously, dreading the moment when this would turn from a pleasant chat to a life-changing conversation. I took a deep breath and decided to put her out of her misery and responded with “Okay, go ahead,” sensing that for the first time in sixteen long months my mom, a special education veteran of thirty plus years, was finally going to agree with me about my son’s unique “world approach.”
In the space of the next few minutes she cited every example of “different” that she had seen between his birthday and this trip, some of which had been nagging at my soul almost since his birth. She remarked upon his aloofness, the lack of eye contact, and of course the drop-off in the precious babbling, all symptoms that had elicited my deepest fears particularly since they were exacerbated once he’d turned twelve months old. She acknowledged that she had noticed all of these signs occasionally during her previous visits his first year, but what disturbed her this time was seeing so many signs in greater abundance coupled with the absence of relatedness, those little moments that had so endeared Justin to her after spending a week-end with him. Strangely, accompanying the sick feeling in my stomach at her words was a feeling of relief. Finally, finally, someone “got it.” For the first time I was no longer alone in the suspicion that something was seriously different about the delicate neural pathways of my son’s brain.
At the time that conversation was devastating to me, but it enabled me both to pursue a diagnosis for Justin and to start lining up the therapies he so desperately needed. I was very fortunate that my mother had three decades of experience with special education, and she was instrumental in helping me figure out the labyrinth of Early Intervention Services in both Virginia and New Jersey, where we ultimately ended up residing. My mom was a huge support during those first very dark months after diagnosis, and Justin’s biggest cheerleader after he slowly began to make progress toward the kind, loving, and joyful child he is today. I began “ahead of the curve” when it came to talking about autism with my mom- I know my family was very fortunate in this respect. It’s been almost ten years now since that difficult period, and as I look back now here is what I wish all grandparents in this situation could know and do upon hearing their grandchild has autism.
1) Talk to your son or daughter and find out activities that you and your grandchild can do together that you will both enjoy. If possible take pictures of what you’ll do in advance and create a “social story”, which is a book with writing that explains what the activity is in advance.
2) Wherever you decide to go, try to avoid having to wait during the activity. Waiting is often very difficult for children on the spectrum. Your time together will go more smoothly without a great deal of down time.
3) Always try to connect with your grandchild on his or her level. Children with autism sometimes play with toys differently than neurotypical children. Try to accommodate their needs whenever possible.
4) If you’re comfortable, offer to babysit as often as possible. Many parents will be overwhelmed in the weeks and months following an autism diagnosis and will need a break. If babysitting is impossible, consider paying for a night out for your son or daughter and his or her spouse.
5) Even if you disagree with a course of action your child is taking with your grandchild, be respectful of his or her decisions. There is no road map for autism- your child knows your grandchild best, and needs your unconditional support.
6) Read as much as you can about autism. Attend workshops and seminars whenever possible. The more educated you are about the disorder, the more you’ll be able to help.
7) Always be available to your child to talk about your grandchild’s challenges and triumphs. Your son or daughter may need someone to talk to about their experiences.
8) If possible attend Early Intervention meetings and IEP meetings with your child. It’s always beneficial to have an extra set of ears at important meetings.
9) Remain positive. Autism is not a death sentence; many individuals with autism lead joyful, fulfilling lives. It’s important to remind your child that even with this diagnosis, their child’s future can be a positive one.
10) Make sure you take care of yourself too! Find a grandparent support group in your area, or simply make time to rest and relax.
For more information regarding grandparents and autism check out “A Grandparent’s Guide to Autism”, an Autism Speaks Family Support Tool Kit
January 27, 2014
I battle what seems like gale-force winds to open the door to the movie theater, and Justin sneaks his hand out from between my intertwined fingers, making a mad dash for the popcorn. I clutch at his coat and manage to halt him in his tracks, and after a bit of cajoling am able to propel him over to the fairly long line for tickets. After a brief skirmish he thankfully relents, and we make our way over to the dividers, my son sharing his enthusiasm for movies and popcorn with a loud “eeee” to everyone around him.
I smile to see him so happy, and notice two young boys with their mother staring raptly at Justin, who is literally bouncing up and down in time with his vocal pronunciations. I watch as one boy pulls on his mother’s sleeve and points at my son, and I see her whisper something in his ear. Our eyes meet and I smile, because it’s hard not to notice Justin when he’s this loud, and she tentatively smiles back. I’m about to turn away and attend to my boy, when unfortunately I regard what I like to call her “look chaser.”
It’s pity. Blatant and pure pity. And I am enraged.
Fortunately, for the better part of Justin’s life I’ve been spared this indignity, perhaps because we’ve resided in places I feel have an empathy for special needs kids, or perhaps we’ve just been lucky. I am thankful Justin never seems to register these looks, is generally immersed in what he’s doing, usually happy in his surroundings.
I feel his hands on my face as he angles me in for a kiss, which he does dozens of times unprompted throughout the day, and I feel some of my anger melt away. I wish however that I could pull her aside and tell her to save her pity for someone who needs it, because that need surely does not exist here.
If I could pull her aside however, this is what I would say.
Leave your pity at the door. We need your compassion and acceptance, nothing else.
Telling your son to look away from mine does nothing to educate him about differences, and celebration of those differences. Teach him to embrace those with a neurology different than his. This learning begins with you.
My son can’t speak, but he seems to understand almost everything we say and do. Think about how that look of yours could affect him. Imagine if someone looked at your child that way, and he saw it.
My boy, who has severe autism, is a gift, a beautiful, intelligent, loving gift. He’s amazing, and I wouldn’t trade him for the world.
Eventually, the longest line in history ends. I purchase our tickets with one hand restraining Justin and one navigating through my wallet, and we encounter yet another long line for his favorite treat. I notice the family of three has boycotted the snack stands, which leaves me to focus on our carb target, and remember where to find our theater.
Justin’s enthusiasm has been somewhat tempered as food has come into play, and he eagerly follows me to our seats, focused entirely on the butter-laden kernels he will soon consume. I settle us in, but before I dispense with his snack I lean in to kiss him and he smiles, then points to what’s really important.
Food. He is so my son.
I am calm now, and I lean forward before the trailers begin to tell him two more things, sentiments I impart to him on a daily basis, usually multiple times.
I tell my son I love him. I tell him that he is the best boy in the world.
And he is.
January 21, 2014
“Mom, what does disabled mean?” my six-year-old son asks me as he whips around the corner, stopping dead in his tracks just inches from me. “Where did you see that word?” I ask, because it isn’t one we’ve used much around here when we discuss autism. I am determined that Zach view both his autism and himself positively, and I find that difficult to do if employing a word that starts with a negative.
“On the tv!” he smiles and points, and I look at our newly hooked-up play station three and realize I’m going to have to get daddy to help fix it. I acknowledge I’ve been holding my breath, and I quickly draw in air, relaxing as I realize his query is completely technology-related. I pry my husband out of the garage where he’s puttering and go back to my mound of dishes, thinking about why that word summoned such a strong reaction in me.
And I realize, that despite my youngest son having autism spectrum disorder, I don’t view him as being disabled.
That may seem like a bold statement to make, and I’m certain some of you may disagree. There have most certainly been exhausting challenges along the way since the terrible weeks when Zach regressed five years ago, with bouts of diarrhea and wordlessness seemingly scooping up our child and leaving a stranger in their wake. Trust me, it took some time for his words to come back. It took longer for his ebullient soul to return to us, but to our joy, return it did.
During those initial years after his diagnosis there were hours and hours of therapy, play, and just plain interaction with him. There was self-contained pre-school, partially mainstreamed kindergarten, and now first grade in an inclusion classroom. Zachary has friends, loves learning, is able to participate in almost every activity he wants to join. He is, and I write this with great gratitude, quite independent, happy, productive, and safe. He still has trouble with impulsivity. He is still autistic.
But I no longer view his life as limited as I once did during those dark days when seemingly nothing could make him smile.
After having taught several hundred children during my career as an educator, I’ve come to believe we all have our challenges, whether they be an atypical neurology or simply events that have occurred in our lives. At times Zach still has to be reminded to temper his enthusiasm (occasionally, a few of his classmates would like to answer the teacher’s questions too.) He has strong emotional reactions to situations many children would brush off without a thought. There is still progress to be made.
My youngest requires a great deal of attention. But then, what six-year-old doesn’t.
Eventually the word “disabled” will return to us again, and not in relation to a gaming system beyond my capacities to understand. We will once again discuss the merits of autism, and the differences between its manifestation in him and in his older brother, who is severely affected. My son and I will talk about what it means to have a life-long disorder but remain able, able to love, be productive, and live independently, which have always been my dreams for my boys. We will talk. And again, his ability to communicate his wants, needs and dreams is something I never take for granted either.
I want Zach to stretch himself, to shatter barriers, to never self-impose limits. I believe that for this child, these things will happen.
And I can’t wait to see his life unfold.
January 13, 2014
I enter through unyielding school doors with a rush of wind at my back, and as always I am struck by the peaceful atmosphere that reigns in this school for moderate to severe autistic children. I am here to pick up my eldest son to take him to the neurologist, and as usual am compulsively early, so I tell the secretary not to call down for him yet.
I use my extra minutes to have an impromptu conversation with Justin’s principal, assure him all is well, am assured of the same in return. I realize I’d better collect my kid if I want to make our appointment, and the secretary graciously notifies his teacher I am here as I sign him out.
I wait a few seconds, then I hear it- a long, joyful “eee” shouted high to the hilltops, and I am certain Justin has been told of my presence. A few moments later he comes bounding out of the room, rushing down the hallway with his teacher in tow. As usual he is thrilled to see me, leans his head in for a kiss, then grabs my hand and immediately tries to propel me out the door.
Usually, mommy equates with fun. I’m not so certain he’ll feel that way after I tell him where we’re going.
I have a quick dialogue with his beloved teacher and we’re off, me holding onto Justin for dear life in the parking lot, keeping an eye out for oncoming cars all the while. I settle him in, reprogram my trusty and all-so-necessary GPS and exit onto the street, still confident I can make the appt. on time.
If I’m schlepping my kid across Jersey for two hours, I want to make sure he sees that doctor.
I relax into my seat as well and think back upon that warm welcome I received from my son. I remember back to a time almost ten years ago when I was told by a professional that since Justin had been diagnosed as a toddler, he could yet experience a regression as he entered his third year, one that might involve a lessening of emotional ties. I recall being frozen with fear because despite the severity of my son’s diagnosis, we have always been close.
At that point in his life Justin was generally miserable, plagued with sleep problems, gastrointestinal distress, and frequent illnesses despite the fact he was rarely around other children. Still, even on his worst days I could eventually cajole a smile out of him, and sometimes his elusive and longed-for laughter would peal around the room. I couldn’t stand the thought that things could get worse. I particularly couldn’t bear the thought that the close relationship we had forged could fray, or end up in tatters.
Fortunately, for us the strong bond we had built only became more solid.
I look in the rearview mirror to see my son rocking out to Adele (between all the therapists and activities, I spend a lot of time in the car with my kids), and smile. There were so many fears I had ten years ago that have since been allayed. I feared we’d never communicate with one another, but then my son mastered PECs and later the iPad.
I worried he’d never sleep through the night and by extension I never would either, which fortunately proved itself false. I was deeply concerned I’d never get him to like any activity outside of our house, which through trial and lots of error eventually became untrue.
Most of all however I feared that loss of love, which considering how many times he kisses me daily, happily never came to pass. We adore each other. And despite the severity of his autism, he manages to convey that love without words, with a conviction and a confidence that I never take for granted.
I have to remind myself of this when I start perseverating about his future ten years from now. So many of my deepest fears never came to pass, and so many of my hopes for Justin have been realized. Fear and worry have never been my friends.
Hope and action are.
January 6, 2014
“Mommy, tell me a story” my six-year-old with mild autism entreats me, and in the rearview mirror I see him gift me with that grin I know so well. “Ok, who will be in it?” I reply a bit tiredly, but I’m game as he hasn’t asked me to recount one to him in a while, and I’m loathe to relinquish our mutual passion for tale-telling.
“Me, Justin, and monsters” he answers, and for some reason my mind wanders to a story I’d just told him where he vanquished the Loch Ness Monster, ultimately taming her and using the beast to fight the Dark Side.
I soon weave him a story in which his older brother with severe autism is stranded on a raft in Nessie’s lake, is terrified of being capsized by the broad arc of the serpent’s tale. At the end I tell him how grateful Justin is to him for saving his life. I also share with him how although his big brother can’t speak out loud, in the story he talks to Zach in his heart.
I tell my son his brother says “I love you Zach, you are the best little brother in the world, thank you for saving my life,” and I end with a grin. I glance in the mirror one more time and see my eldest rocking out to “Rudolph the Red-nosed Reindeer” then I swivel slightly to see if my latest fable has met with my son’s quite discriminating approval.
In the reflected light of the mirror I see my small son’s head in his hands, fingers nudging his glasses off his face, his shoulders shaking slightly as tears roll down his cheeks.
It appears my story-telling has made my own six-year-old cry.
I quickly ask him what is wrong, and after a short silence ask him if the ending made him sad. He answers that he is in fact crying tears of joy because his brother is talking to him, even if it’s in his heart. He tells me the story was a good one.
I take a deep breath and wipe my own eyes.
In my family we discuss autism all the time. Zach knows and revels in the face he has a “little bit of autism.” He is aware that Justin quite obviously has a lot. He also knows his brother loves him, evidence of which I provide on a weekly basis. Zach is aware that Justin would never permit another child to be so physical with him, would never welcome the hugs and infrequent rough-housing Zach bestows upon his sibling as often as he can.
He is well aware that Justin’s face lights up whenever he enters the room- that even thought his big brother cannot express his joy vocally, he conveys it through his expressions and his compliance with Zach’s frequent demands. My last child has told me over and over again that he’s okay with Justin having the disorder, fine with the fact he doesn’t speak to him out loud, quite confident in the relationship they’ve formed.
Yet I wonder, for the millionth time, if he really is okay with it all.
I reassure him that while it’s alright to have tears of joy, that it’s always okay to have tears of sadness too. I tell him that I’m sometimes sad that Justin’s autism is severe, that my son who grants me a hundred kisses daily is held captive to his OCD, the rigors of which often render him miserable.
I tell him I wish Justin could have friends like he does, and I see Zach nod his head slightly in acquiescence. I share with him that I wish my first child could talk too, how it’s hard for me not to know what he’s thinking, that I’m certain a vibrant intelligence dwells beneath his almost-mute exterior. I ask Zach if he wants to talk more about Justin and he says no, that he’s okay. He then commands another tale, requests that this one include light sabers and epic battles waged. I tell him I’ll see what I can do.
It is clear the conversation is closed, at least for today. But I know I’ll revisit it many times, encourage him to share his feelings, even his disappointments. We talk a lot, me and my smallest son. Our discussions are something I never take for granted.
So I breathe deeply again, and devise a tale where he and Justin must work together to overcome great evil, each using his strengths to counteract his sibling’s weaknesses. I forge a path where together the boys benevolently rule the world, each in his own way. At the conclusion they remain connected to one another, and reign victorious over any who would threaten them, or their bond.
And as I end yet another saga for my boy, my own heart speaks out loud, wishing it to be a tale come true.
January 2, 2014
Ten years ago this month I brought my first-born in for a routine doctor’s visit to address his reflux, a frequent and unwelcome visitor who had returned to torment my baby. I stood with my diaper-clad seventeen-month-old in a brightly lit, overheated room, anxious to get that magical scrip that would alleviate his discomfort, eager to leave the office and resume our lives.
Twenty minutes later I would stand in the center of that neon-lit waiting room shaking, barely able to dress my child, clutching incomplete articles with the word “autism” prominently displayed in the title in my trembling hands.
Ten years ago, in one minute my world as I knew it ended.
A decade ago I made a promise to myself that I would always tell it like it is, and I would be lying if I didn’t say that at times, the last ten years have been hell. Despite his generally positive, affectionate nature, my eldest child moves through cycles of aggression at least once a year. He is also plagued with OCD which renders him miserable at times, and wreaks havoc in our house.
I’ve also witnessed my second child (one who unlike his sibling appeared to develop typically) relinquish the world of sounds and descend into a foreign world of silence in the space of a few weeks. I watched as he too became victim to serious gastrointestinal issues, held him helplessly for months as diarrhea coursed through his body until the new diet we tried eventually kicked in and alleviated his suffering, much to our profound relief.
I won’t lie to any of you. At times, for both of my children, I could only equate autism with suffering.
At times, there truly was no silver lining.
I occasionally think back to the woman I was ten years ago, wrestling with her child’s diagnosis, and that same girl a half decade ago, as she watched the light as she knew it leave her second son’s eyes. In those instances our lives seemed devoid of hope, empty of promise.
Truly, the only way to go from either place was up.
I won’t ever tell another parent going through an autism diagnosis that it will definitely get better. Nobody, no matter what they tell you, nobody can completely predict the trajectory of a child’s progress at the time he or she is diagnosed. Trust me, Zach’s doctors are stunned that he’s mainstreamed in an inclusion class without an aide, participating in after-school actitivies, has friends (and yes, he’s still autistic.)
I used to see the glimmer of surprise in certain professionals’ faces when my eldest bestowed his frequent kisses on my in an exam room (we use different doctors now), watched their faces register disbelief that a severely affected child could be so loving. The doctors don’t know everything. However, they will probably tell you they do.
So, I won’t promise you that it will all be okay. But I will tell you you might change your definition of okay, and hopefully that will bring you peace.
My youngest son is still on the spectrum, but he believes his life to be one long glorious adventure, and for that I am grateful.
My eldest will never attend college, have a spouse, or live independently. I’ve reconciled myself to the fact that I will always be sad he doesn’t have these choices, yet relieved he seems to have forged a fragile truce with autism, is mostly a joyful, ebullient child, confident in the world he calls his own.
After ten long, arduous years there mostly exists a state of peace in our household, for which I am eternally grateful. This peace has enabled our family to have a full and rich life together.
This hard-won peace has given me back my life too.
After ten years we are finally in a place where I am contemplating part two of my career, feel I can make more time for friends, know I can breathe more easily. I feel as if I’m rediscovering myself, my needs, my wants, what makes me happy. At times I unearth the echoes of that fairly fun girl from ten years past, and I embrace her warmly, remember how her outlook was one where anything was possible.
I’m not there yet. But I’m working on it.
And as we begin a new year, full of wonder, full of promise, my wish for all of you is that this oft-elusive peace will grace your lives, and you will find yourselves once again too.
December 31, 2013
This piece originally ran on 12/31/10
We made a gingerbread house today, my youngest and me. Not the fancy version mind you, with its cinnamon-spiced cookie walls and sticky-sweet icing for snow, but the felt version, as I have yet to figure out how to create an edible construct that’s gluten and casein-free. The form doesn’t seem to matter to Zach however, as he seems content just to forge this linen building with craft glue and discretely adhered masking tape. He is simply happy to sit at our designated table with his mommy, and design his own.
I am thrilled to be here with him as well, as this is the first “Christmas house” we have built together, and the added bonus is it conjures up the requisite images of festive architecture from my childhood past, pleasant in their remembrance. As I sit with him and attempt to gain better purchase on the tiny chair I am well aware of the enormity of this gift, the ability to carry on a tradition with my child, one who is eager and willing to perform it with me, one who miraculously was able to request its creation.
It’s the last month of the year, and as always, just like the commencement of the school year, it’s a time of reflection for me. I consider where we’ve been and where we now reside as I help Zachary construct his house, watch him carefully separate out the pieces of his one-dimensional art form with such care, and manipulate the tiny forms with such ease. He desires to begin at the top of his home and work his way down, and as I’ve never been one to insist on coloring in the lines we alter our blueprint a little, an act we’ve committed time and time again in our family of four.
He begins with the roof, which he tells me firmly we require because “it will keep everyone warm and cozy.” As I contemplate how he’s incorporated the latter adjective into his lexicon of words I am simultaneously reminded of the outpouring of care and compassion we’ve received over the years, the small and grand acts of largesse, and the kind words both spoken and written to encourage our clan in times of conflict. These acts have blanketed us, permitted this family to retain the heat, the fire necessary to forge through the most searingly difficult times. We could not have built our own home without them.
Once the roof is safely adhered Zach moves onto the windows, neatly punching through the cloth panes of glass to afford us a glimpse of the other side, allowing us to widen our view. I recall how watching my youngest son’s language expand, and my oldest son’s increasing desire for social interaction, have both enabled me to envision a different world for my children this year. We now inhabit a home in which the future may hold more than just fleeting glimpses of a “normal” childhood, one in which both of them may actually one day possess a true friend. I am so grateful for that expanded vista, for the possibilities inherent in those translucent frames.
Finally, Zach addresses the foundation, shoring up the edges with his tiny fingers immersed in solvent, asking me if his careful ministrations are correct. I smile and tell him his house is lovely, as in its own way, is our own. Our foundation has also been conceived in patience, moored in consistency, cemented in love. It’s not seamless, and there will always be cracks. But it will continue to stand.
It will always stand.
And my wish for all of you in every year to come, is that your own house, no matter how it’s constructed or what form it takes, will continue to stand, wind and weather-battered, as magnificently strong as ours.
I’d like to take just a quick moment to extend my immense gratitude to all of my readers this year. I am so appreciative of your continued loyalty as I’ve shared our story. I’m including the photos that made it to the McCafferty family Christmas card this year below. Thank you to everyone. and I wish all of you a joyous and happy 2014!