“One, two, three, four, five, six, seven, eight, niiiiiiiiiinnnnnnnnnne, TEN!” I count with my eyes shut tight, for I love this game just as much as my boys do. Peering from behind a tree I enjoy a momentary silence, then hear a harmonious snicker from behind the bushes. I can’t help but laugh because in their version of Hide and Seek, J.R. and Jackson hide together in the very same spot, at least six times in a row. In the case that they choose a different location I still need not worry I will spy them, because within seconds the two come running toward me laughing and screaming. They know they aren’t supposed to give away their positions, but these are their rules. Demented. Fun. Memory-searing.
I paused to catch my breath after the last game that included all of my boys, looked deeply in to my husband’s eyes, and giggled in sync with him until my stomach hurt. Our lives aren’t a laugh a minute but taking a minute to laugh, even if it is at our own expense, sure feels good.
Later though I thought about how much my life raising a son with autism has been a game, unfortunately much like that of Hide and Seek. You see, my son J.R. is in a tough spot. He isn’t as affected as many children. He is verbal, bright, and thank the Lord, funny. On the other hand, his behavior is immature at best and his social skills are pretty much non-existent. All in all, with a diagnosis of PDD-NOS, many J.R’s autistic traits are “hidden,” causing little alarm to seek the most aggressive of therapies.
Then J.R. has a bad week, multiplying the above description of him (minus funny) times a thousand. He is overly and repetitively verbal, to the tune of “I HATE YOU,” “YOU ARE THE WORST MOM EVER,” “NO NOO NOOO NOOOOO!!!” and something that sounds like a low growl (over and over and over…). He becomes so “bright” (aka frighteningly rude) that we dare not leave the house.
Did I mention a bad week feels like a bad year, or seven?
That’s when the ground below me becomes soft, and even Hide & Seek’s “home base” seems unreachable. Like a bad dream, the faster I attempt to “tag” J.R., the more my legs turn to jelly. Why? Because as I feel my son slipping through my fingers, this is what is going on in my head:
1) I can never, ever, forgive myself for what “happened” to J.R.
2) I can never, ever do enough to help J.R. improve.
3) J.R. is growing older by the second, and I by the millisecond…
and wait for it; wait for it ….
4) “Hiding” J.R.’s shortcomings has been my drug, and the soul-“searching”
that ensues is the bitter withdrawal….which leads to…
5) What solutions do I try to score next?
God I need a life coach.
Ever since I figured out something was “wrong” with J.R., I had an excuse (or at least a quick exit plan) ready to explain his behaviors away. From sleepy, to hungry, to oversensitive, to simply joking, I had an answer to “please” the “crowd.” My justifications (lies) worked when to hide J.R.’s problems when he was little, and for that reason my laziness allowed me to avoid tackling J.R.’s issues head on. If I had played to win from the start, maybe I wouldn’t still be seeking the latest and greatest strategies to manage him. My pride has won me the honor of caring for a nearly nine-year-old who still pees the bed, can’t tie his shoes, and would get hit by a car in an instant if he weren’t being watched.
I don’t do this very often, but I think I will cut myself a little bit of slack in the effort department. My husband and I have spent not a small but a large fortune toward J.R.’s improvement. We’ve tried, and happily sacrificed. It is the playbook we chose to follow that has me lying awake at night. Forget the typical thoughts that have me wondering do we spend in therapies to the point of bankruptcy in order to get the best version of J.R. that we can OR do we SAVE so that we have enough to take care of J.R. for the rest of his life (our lives?). What really eats at me is that, because J.R. falls in category of average player when it comes to the severity of his disorder, we have chosen to put him in educational settings that force him to rise to the occasion. J.R. struggles to keep up in a school for more typical kids, but until now I figured it beats being MVP of the special education class. Or does it?
J.R.’s behaviors were so “off” this Spring Break that I allowed him to spend it out of town with his grandparents. In other words, I went in to hiding from autism. I can’t even begin to tell you how hard Monday will be (April Fool’s Day- ha!). Don’t even try to call. My saving grace? Last time I checked, J.R. was diagnosed as having an autism spectrum disorder and few people in my life suspect otherwise. And not one of those beautiful cheerleaders has ever faulted me for fearing I may have benched my son at one time or another. In fact, they tell me that my ability to stay conditioned makes me a better mom.
Today, my last day to hole up before J.R. returns from the unbeatable grandma and grandpa league, my husband and I played Hide and Seek with our typical five-year-old Jackson. He is such a joy and we laughed until we had grass stains on our jeans and tears in our eyes, but I couldn’t help thinking that the game wasn’t the same without J.R. I miss him terribly, and I tried miserably to conceal even those feelings. When the game ended I stupidly dropped something on my toe and it hurt for a minute or two, but for some reason I could not stop crying. I ran off before I had to hear my husband say “there’s no crying in Hide and Go Seek!”
Any game requires strategy, and it has been said that in cards one must “know when to hold ‘em” and “know when to fold ‘em.” As hard a time I’ve had staying in this game, I know what I WON’T be doing.
P.S. We are starting a new type of therapy with J.R. starting Monday. Game on.
Follow J.R.’s humor on Twitter @jrsawetisms