May 8, 2012
It’s finally “real spring”, which for me entails a prodigious amount of pollen, sunshine, and enough temperate weather to get my kids out of the house, but doesn’t necessarily coincide with the official onset of our fairest season. “Putting away winter” as my youngest son would say has taken on a far more profound meaning this year than most, as our family has just experienced a four-month detour into “siege mode” with our eldest autistic son, a phrase coined so aptly by Susan Senator some years back.
In truth, less than three weeks ago, I was on the phone asking my son’s teacher if his increased aggressive behavior was putting him in jeopardy of losing his spot at his private autism school. Four months, seventy-two hours, and two major medication changes later, I began to see glimpses of the son I knew last fall. That is to say I gratefully saw the return of the child who is known at his educational placement for his generally happy demeanor, and predominantly good behavior as well. I began to witness glimpses of the boy one who rushes up to me at least a dozen times a day and bestows a kiss on my forehead for no reason whatsoever. He’s slowly, but decidedly, coming back to us.
And trust me, I am first to wish a fond farewell to this winter of our family’s discontent.
I have discovered with Justin that his more severe autism “symptoms” seem to be cyclical, that every few years or so we see a regression of sorts, usually preceded by an illness. It’s not just the loss of skills that’s so distressing. It’s also the loss of the peaceful nature he and his teachers, parents, and therapists have worked so diligently for him to acquire.
The absence of his hard-won joy frankly worries me just as much as the troubling dearth of sound that so recently emanated from his throat during speech sessions, the “mmm” and “bbb” sounds that had made a sporadic resurgence over the past year. Thankfully, during these difficult periods, skills other than the ability to conjure consonants and vowels seem to retain their stronghold in his brain, so all of us who work with Justin are not witness to the unraveling of all of our hard work, and of course, mostly his efforts and determination.
And for that, I am eternally grateful.
In general I am a “suck it up” type of girl, a fact which I attribute far more to an ornery genetic inheritance than any calculated fortitude on my part. I’ve found in times of crisis that forging forward with a plan (or several) has been more cathartic to me than talking out my woes, and I’ve often turned solely to my husband, or inward to myself, for solace during the most draining periods we’ve experienced with both boys’ bouts with autism. I’m not certain this is the healthiest path to take, but this method has always enabled me to simultaneously process what’s happening to my family, and blaze a trail through it to secure solutions.
At least, this process worked until this past winter.
This year Justin’s suffering hit me especially hard, truly knocked the wind out of me. Perhaps the depth of my despair was fortified by the stress (and maybe sheer idiocy) of simultaneously directing, producing, and acting in my own play, an endeavor I took on willingly despite any theater experience whatsoever (truly, my kindergarten Christmas pageant was the last time I dabbled within that realm). Maybe it was the fact I hadn’t seen him rendered this miserable since he was a toddler, and couldn’t bear the thought of the return of such an angst-ridden child in a now far larger, and far stronger, body. My malaise could have been triggered because I’m always afraid he won’t transcend these cycles, will be unable to regain the positive nature which resides at the core of his soul.
Or, perhaps I’m just getting old.
Whatever the reason or reasons, I didn’t rebound as I have in the past. My sleep patterns suffered, which for me is catastrophic, as unfortunately I’m one of those boring people who actually requires steady slumber. I became forgetful, finding myself writing things down more than usual, then not remembering I had done so. I lost the joy I’ve relied upon all these years to suck me back into the daily world no matter what is transpiring in our house.
Fortunately, I realized what was happening, and I sought help. I’m talking to a therapist now, and I find that the ability just to share what’s going on in my life for a solid hour is almost as cathartic as writing. I’ve dabbled in the social world again, making plans with friends I’ve put off for a season. I even purchased a hot stone treatment for myself as a birthday gift, and have discovered I am a convert to steaming rocks, ruined for life for more mundane massage. I carved out time, and took care of myself.
And in turn, I was able to take care of Justin, fully, completely, and with all the skills and resources at my disposal.
Parenting is one of the most difficult jobs in the world. Being a parent to a special needs child just ramps up the difficulty quotient immeasurably, can at times seem to be a Herculean task with no end. I cannot emphasize enough how important it is for us to care for ourselves, to tend to our needs even when that task seems nearly impossible. I just read a fabulous post about this subject on Outrunning the Storm. It prompted me to write this piece, and take a look at this year and how I can do things differently, and better, in the future. There is no doubt in my mind that we’ll go through periods like this again. I need to be prepared. There’s so much at stake.
And it’s not only Justin’s happiness that matters. I have to remember my own does as well.
So if you’ve found yourself in “siege mode”, or semi-siege mode, or are just having a difficult period with your child no matter what his or her issues, don’t forget to attend to your needs, as often and as soon as you can. You require that care. You deserve it as well.
And believe me, it’s for your kids too.
October 23, 2011
It seems we’ve come to a place in our society where moms require labels to distinguish what kind of parenting we practice. Several years ago I read an article describing how Jenny McCarthy aptly coined the phrase “warrior moms”, a term dedicated to those of us fiercely advocating and fighting for our children with autism. This past year in Time Magazine the zeitgeist shifted to “tiger moms”, an appellation I grasp intellectually, but continue to reject solely on my belief that childhood should include choices, and at times actually be fun. Then last night, as I briefly skimmed through the daily Autism Speaks blog, I chanced upon a reference to a New York Times opinion piece called “Notes from a Dragon Mom”. Without reading the blurb I rolled my eyes and clicked on the link, ready to be regaled with yet another story of a superhuman mother which would surely leave me feeling vaguely guilty for all the things, despite my efforts, I somehow manage not to accomplish for my progeny.
Ten minutes and half a box of Kleenex later, I sent a silent plea to the universe to forgive me for that eye roll.
The piece, by author Emily Napp, describes in exquisite, precise prose how her eighteen-month-old son Ronan, a beautiful little boy with red hair kissed by fire, will not live to see his third birthday. I won’t give you the details here, because Ms. Napp does so brilliantly, with an elegant grace I cannot and should not attempt to reprise. I promise you however, this article is worth your time, and will perhaps alter your perspective on parenting irrevocably.
I know it did for me.
For years after both of my boys were deemed autistic, I was mostly immersed in the physicality of their diagnoses. My husband and I were completely caught up in dealing with sleepless nights, relentless rounds of diarrhea, eating aversions, and with my eldest, the feint and par of aggression. There wasn’t much time to consider the future, as the two of us at times were literally simply trying to make it through the hour. Quite frankly there was a safety to living in the moment, no matter how terrible it was. Having been a veteran educator myself I’d had access to several autistic students over the years, and had been privileged to know and follow their families over time. I had an extremely clear big picture view of what might transpire for my boys down the road, and the prospects were terrifying. I simply shelved those thoughts for the years immediately following what I like to call their “D Days”, and forced myself to focus on the now.
I believe making that shift saved my sanity.
There were times however, particularly during Justin’s pre-school years, that as our daily struggles lessoned, the weight of that possible future would insidiously slip its way back into my head, at times leaving me semi-paralyzed with fear. I realized ironically that as Justin’s challenging behavior lessoned, I would have to ramp up my own self-discipline, try to conquer my own fears, and stop living in my head. I’ve mentioned before in my blog that one of the most helpful tools I used to do so was Susan Senator’s book Making Peace with Autism. Her writing, despite our child’s moderate autism, afforded me both a blueprint for one day achieving a happy family, as well as a second important mental shift.
I clearly remember one fall morning in Barnes and Noble, snatching up this book from amongst a myriad of tomes that outlined the full recovery of the author’s child, and finding immediate comfort from the words within the cover. The solace came not from discovering a family who made every decision regarding their child’s care with consummate perfection. It came from reading about a family who learned to self-correct their errors, who made enough of the right choices despite their son’s severe autism to forge a path which would ultimately make possible what I consider the perfect endgame- a safe place to live, a social outlet, a job, and a happy life.
This remains my intended endgame for Justin as well.
Life continues to improve in our home, with my eldest making great strides in reading, communicating his needs, and finally being able to summon that peaceful child I knew existed, and worked so diligently to unearth, during all the dark years. Despite my second’s son’s identical diagnosis, Zachary’s life trajectory remains quite different than Justin’s, most likely including the more traditional fare of relationships, college, career, and independent living. Over time I’ve been able to reconcile the fact that Justin won’t have these options, mostly because he’s achieved the most important goal I’ve always had for both of my kids.
Both Justin and Zach love their lives.
As we’ve reached this point together as a family I’ve realized I won’t ever completely be at peace with the paths autism has altered for us, but the truth is I am completely at peace with that realization. There is one fear however that has lingered for me, the one that requires a serious “aha” moment, or one last emotional transition. I have yet to figure out how to deal with those decades I won’t be around to protect my boy, although if it were possible from beyond the grave, I surely would. Part of my problem is projection, or the very real fear of all that can go wrong when I’m gone.
Every year since Justin’s diagnosis I’ve come across a heartbreaking story of an adult with autism’s neglect, injury, or untimely death. These stories simply exacerbate my deepest fears, heighten the atmosphere of “what happened now”, in which my family dwelled for so long. The possibility of someone hurting the someday adult who will always remain my baby clouded the future, prevented me from seeing an alternative route. Yet the truth is, Justin may live safely for the forty years he’ll spend on earth without me. He may in fact acquire that job that suits him perfectly, enjoy authentic social opportunities, truly revel in his life. There’s every chance he may be just fine. The reality is, he’s lucky to have a future.
And last night, in devastating detail, Ms. Napp reminded me of that simple truth.
I admit, I feel somewhat guilty gleaning clarity from this piece, seeing how this author must surely dwell, despite the sweetness of living in the now, within the confines of constant, unremitting pain. Her words certainly have not completely eradicated my deepest worries concerning Justin’s existence post-parent, but they’ve given me a different way of contemplating the arc of his life. For that gift, I am eternally grateful.
I am confident I will never have the honor of meeting Ms. Napp to physically thank her for sharing her story. The most I can do is share the piece here. As the author states near the conclusion of the article, the truth for all of us raising the next generation is that “none of it is forever”. I thank Ms. Napp for altering my perspective. And I know, as I hug my boys who have already lived longer than her son probably ever will, I won’t forget this truth any time soon.
July 22, 2010
Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist
Today’s guest blogger is Susan Senator, and I am truly honored she allowed me to share her writing on my own blog. A few months after Justin was diagnosed I began reading narratives of other families’ journeys with autism (at this point I considered memoirs a break from the internet and a welcome escape), and Susan’s debut book was one of the many I chose to read. What made it invaluable to me was that it was the first I could find that related the story of an unrecovered child, and demonstrated a way of life that permitted me to hope that even if Justin didn’t end up in that small cadre of fortunate children, I could still retain my dreams of having a happy family. I am forever grateful for that early insight.
I chose this particular piece because in many respects, I feel my greatest remaining challenge in my daily dealings with autism revolves around my own perspective on it, my need to escape my own head. I am certain my readers will enjoy her writing. Thank you, Susan!
Thursday, April 29, 2010
Getting Out of My Own Way
I was very surprised at how much I enjoyed the afterschool class I teach — little girls’ Middle Eastern dance (aka Baby Bellies). I have not taught BB all year — I got burned out last year — and so I have not been in my stride. Today was the second class. And I was totally dreading it. I looked at the bag of bright colored jingling shmatahs, and I thought, “why did I sign up for this?” I was remembering class at its very worst, when there were about 8 screaming 8 year-olds, running with my veils dragging, and all kinds of school people (kids, teachers, specialists) looking at us to figure out what the heck we were doing. And there I would be, with my hip scarf tied around my jeans and my boots off, trying to teach these girls a few bellydance moves while trying not to perspire too much. Good luck with that, as Jerry Seinfeld would say.
The problem with me is, sometimes I get in my own way by thinking I know what something is going to be like beforehand, and then getting sick of it before it even happens!
To be honest, there are some Fridays where I think, “Argh! I almost forgot, Nat’s coming home for the weekend.” And, please God forgive me, my spirits plummet. I immediately think of how I’m afraid it’s going to be, namely that I will be trapped in the house a lot unless I want to take him out with me. So I make the mistake of feeling like I know what it’s going to be like (living with Nat the way it is at its worst) before the guy even steps off the bus.
There were so many times in his younger life when Nat was so difficult my life felt like a prison. I am so sorry to say that, and I’ve said it before for sure, but it is the truth and that is that. It makes me sad to think that I have felt this way about my son, whom I love probably more than I love myself. But loving someone and living easily with someone are two different things. There was the bloody wrestling to the ground outside of the Stop & Shop. There was the horrible struggle in the subway, holding onto Baby Benji while fending off Nat. There was the clawing of Max’s hand at the Bertucci’s. The screaming, screaming, screaming. The inexplicable screaming at the end of George of the Jungle (probably warranted, when you think about it). The attack while I was driving. The pouring of water in the handbag, the pushing over of little kids at the playground. These things die hard in the memory. It is very unfair to him. That stuff, after all, is the disability. Or, more accurately, the co-morbid conditions that frequently accompany autism. There is no wheelchair, there is no cane, no feeding tube, no weak heart. There is the sudden, scary snap. Intermittent Reinforcement, a most powerful psychological dynamic. Rats.
He’s not like that now. Now there is this fast-moving young man, very content to be himself, anywhere, with anyone. He is game for anything: a trip to the mall, Home Depot, a restaurant, a bookstore. He will try on shoes, try new foods. He will sit and read his social group schedule over and over again, and leap up off the couch when I say, “Okay, it’s time to go, Nat.” He loves visiting people, loves parties, I could go on and on (especially since this is my blog, and not a newspaper or editor I’m writing for). So what, then, is my excuse? Get over it, right?
There is, however, my low-grade anxiety that is always with me, like a small, invincible infection: the worry that somehow, what he does with his time is not good enough. And it is that feeling that I dread on a Friday afternoon. I have pinpointed it as of today, right now. The feeling, the fear, that I am allowing a mediocre existence for my son.
Which is interesting, because that was exactly what made me dread Baby Bellies. For the longest time I felt like I wasn’t very good at teaching because I could not reign them in. I could not get them to systematically learn the moves. I couldn’t get them to pay attention long enough, before they starting pleading for the snack I always bring. I have a memory for the bad stuff, that’s for sure. The long hour of getting pissed off, of hearing my amazing Arabic music, and having no one really listening. Of not knowing what level to teach, what to expect.
Sometime recently, it gelled, however. I realized that I could sit down, pick music at my leisure, and be there for them — let them come over to show me stuff and to ask questions. When I feel so moved, I stand up and start doing the Basic Egyptian (walking with a hip lift, trading off sides), or some zilling (playing finger cymbals). Every now and then a pair of girls will have a duet they made up. Today S and J invented “the tunnel spin,” which is the two of them facing each other with two veils draped over their heads, covering them both, and then they spin apart. The other girls wanted to learn it. Then E starts in with her move, “which is kind of like jumping rope with a veil.” “Just be careful not to trip,” I say. Off in the background, always always where she is not supposed to be — by the desks piled up in the corner — is K, saying, “Pretend I’m…” or “Pretend you’re…” Those were my exact words when I was her age. And I thought, how I would have loved a class like this, with a mellow teacher who never yelled, never shamed anyone, encouraged, taught you when you wanted to learn, and brought in all kinds of dress-up materials. Weird music, but nothing’s perfect.
So I ended up having the best afternoon with the Baby Bellies, staying way beyond the scheduled hour, so they could show their moms what they had learned. R does quite a decent hip-bump sideways walk with double veil (something I don’t think even Petite Jamilla does). K is just in her own world, wrapped in her turquoise like a blue mummy. I just sit and soak it in, a happy sweet-filled sponge. And so, I’m going to go into sponge mode tomorrow when that van honks.