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.