April 13, 2011
My mom likes to send me online articles related to autism, and due to her diligence I recently read a piece entitled “iPad Not a Miracle for Children with Autism” (which, ironically, I perused after I had just posted a blog entry about my son’s use of the device, entitled “It’s a Miracle”). In it, the author claims that the device itself is not worthy of Vatican anointing, but rather, “the miracle there, as it always has been, is the parents and professionals who work with children with autism.”
Of course, he’s right.
I read through the entire article, then skimmed through the commentary (which with these kind of pieces, is often as interesting, if not more interesting, than the work itself), and reminded myself once again how imperative it is that we facilitate Justin’s acquisition of this device. He’s already employing it at home far more practically than he did his former augmentative machine, initially requiring only the slightest of physical prompts to make his requests with it, prompts that have now been downgraded to my voice only. Justin’s not debating scripture with me or telling me which American Idol contestant got robbed, but slowly, incrementally, he’s incorporating more dialogue into his daily routine. It’s still not a spontaneous event for him. It may never be.
And I have to accept this.
When I was sifting through the responses to the article however, I came upon one mother who described what the device had meant to her son, now almost seven, a child the same age as Justin is now. She described his severe apraxia and limited communication skills, and how over the course of the past year the technology had diminished some of those challenges for him. He was now manding for preferred activities, actions, and even specifying which rides he preferred at Disney World. Social questions were being spontaneously implemented, even down to requesting a particular restaurant within the confines of a mall they had recently frequented. In short, with the touch of a fingertip, the world had become a locale far more broad for her child.
And I still have no idea if this tool will widen Justin’s horizons to a similar degree, ever.
I will say however, that when I watch him use the iPad, I’m seeing my son captivated by something other than food, singing plush toys, or DVD players for the first time in almost eight years. Due to his intelligence and fairly tender age, I will continue to indulge in the hope that this device may be the vehicle through which we communicate better with one another, and far more importantly, the one through which he can get his needs met in an increasingly complex world. I’ve never given up on that dream, and I never will as long as he’s breathing. For years now his progress in this area (outside of academics) has remained fairly static, despite speech therapy, the diligence of his teachers, and his maniacal mother. I’ve learned to redirect my expectations of progress into other areas of development, and they’ve mostly been fulfilled. Despite my desire for him to converse, I consider us to be fortunate in this regard.
But this slender, chic, rectangle has at the very least returned hope to this practical and pragmatic woman, hope that my son, in his own way, might one day “talk”. And if nothing else, I consider that hope to be my miracle.
January 19, 2011
Sure, there were moments of despair after Lost went off the air (they were dead most of the season, HOW COULD I NOT HAVE KNOWN???). I still haven’t gotten over Shakespeare in Love stealing the Academy Award from Saving Private Ryan (the Weinsteins’ campaign ROBBED you Steven Spielberg, for shame, FOR SHAME!!!). I’ll never understand why Kris Allen beat the fabulous Adam Lambert for the American Idol title in season eight, but I’ve been able to reconcile myself to that finale with the knowledge that coming in second has probably been beneficial to his career. Despite the tragic nature of these outcomes, I’ve tried my best to put all these losses behind me, and move on with my life.
After all, I have children. I owe it to them.
I admit, I had to remind myself just how strong I’ve been over the years, particularly following the “Justin after-care debacle”. I’d spent roughly half my free time putting this opportunity together for him for the better part of the fall, and I’d had a great deal of hope that some kind of peer relationship would eventually result from it for my eldest son. When it became apparent after the first day this activity wasn’t going to work for Justin (the half hour of sobbing prior to my arrival to pick him up was a dead giveaway), I will share that I was fairly upset for a few days. Frankly, there aren’t a whole lot of options for friendship for moderately autistic youth (google it, I dare you), and I had invested myself emotionally in the potential for a positive outcome.
Finally, later in the week, after a few long hours sulking on my couch, I eventually came up with a plan. It wouldn’t involve interaction with neurotypical peers, but it would place him around other children, and the central tenet of the event revolved around something Justin had come to enjoy. Plus, it would get me out of the house, where I might actually engage in conversations with people outside of the realm of cyberspace. I know. I have wild, extravagant dreams.
It was clear to me what the solution would be. Justin would be joining our local special needs bowling league.
I should preface this statement with letting you know that unlike the after-care program, I had absolutely no expectations going into this Saturday morning activity. This particular league is open to children and adults with a wide range of disabilities, some of whom I’d witnessed at other events, many of whom appeared much more evolved at taking turns and waiting patiently than my son. He’s made vast improvements in this area over the years (mostly due to having to share with his younger brother, not to any brilliant interventions on my part), but he still has a long way to go. I knew this was a popular activity amongst the disabled crowd, but since there were a lot of lanes at this particular venue I was hopeful he’d only have to share his with one other child at best. I figured we could at least pull one entire game off after all the wonderful experiences we’d had with the fabulous Miss M.
We arrived just in time, and I almost had to body block Justin to get him to stay still long enough for me to collect his felt foot apparel. It was obvious where we needed to go, as I looked down the length of the alley and saw a few dozen children and parents congregating around what looked like only two lanes. I swooped up Justin’s shoes and we received our lane assignment, and I subsequently realized how much I require lasix surgery as it became clear the league had commanded a half-dozen of them. We trudged over, boy and goody bag securely in my hands, and I was fortunately able to find him an empty swivel chair. I introduced us to the nearest parent, and glanced up at the electronic board regaling us with its list of participants.
On this lane alone, there were six. I was relieved I’d remembered to bring Tylenol.
To Justin’s credit, he did as well as humanly possible. I plied him with snacks and favored DVDs as he waited his turn fairly patiently, only slipping his shoes off once during the course of the game. I even managed to converse for three minutes with a lovely woman whose sons were so mildly autistic their form of the disorder bore absolutely no resemblance whatsoever to the subtype my son possesses (and they were FABULOUS at waiting). We made it through the majority of the game, but I could sense my son’s angst building, and I’ve resolved never to leave an activity on a bad note, thus reinforcing the connection between whining and exiting.
Just call it my life’s work.
We packed up to leave, and I had to fend off the protests of the kind woman I’d met who was dismayed when I told her we wouldn’t be returning, as she pointed out that Justin had really done well. He had, and I thanked her for the compliment, but that wasn’t the point. The truth was, he hadn’t had a good time, and as much as I enjoy meeting new people, this wasn’t (sadly) supposed to be about me. It turns out that bowling is one of three activities outside of movies and computer games that seem to entertain my child, and it simply has to remain fun for him. Despite the opportunity to talk to someone other than my husband, and perhaps score some sour cream and onion potato chips from the vending machine, this is not the correct venue for him to participate in this activity.
We exited the alley, Justin thrilled to be on the move, and me saying goodbye to a number of wonderful people in our community I’ve had the good fortune to come to know. He was bouncing up and down for joy, and for once my mind was clear, already on to the next event, which would be how to keep the moderately autistic child happily occupied until we left for his horseback riding lesson in the afternoon. I realized I wasn’t the slightest bit depressed about our “failure”, and that I’d already come up with a slight adaptation on this theme. We’d be coming back here as a family, claiming one entire lane as our own uncharted territory, with my boys taking turns and hopefully, in their own ways, cheering each other on to victory. I slipped Justin into his harness, settled myself into my frigid front seat, and smiled as I turned the ignition key, because once again I had a plan.
And although Jerry Seinfeld says “there’s no such thing as family fun”, we’re going to give it a try.
May 19, 2010
I yelled at the man from the Diabetes Foundation yesterday.
It is generally not my habit to raise my voice to people even if they’re soliciting money from me, but yesterday, I’d had it. For three weeks they’d been calling two-to-three times a day, with a sneaky caller ID name that my husband was able through the wonders of the Internet to smoke out, and I’d ignored every ringing interruption until yesterday. I was expecting my mom to call me back after a faulty connection, so I didn’t look at the phone when I answered it, and got diabetes man instead of the woman who gave birth to me. I started off politely, informing him that I have two children on the autism spectrum, and all of our surplus funds are directed toward autism research, and I wished him luck with his endeavors. Before I could hang up, he interjected in what I decided was a “snotty” tone that he didn’t require our money. He just needed me to write fourteen letters to people and ask them for their money.
I should have taken a deep breath, counted to ten, or summoned my Clooney place, but I didn’t. Instead, after I finished wondering why I had to write exactly fourteen letters, I yelled at the man who was probably volunteering his precious time for a worthy cause. I told him I didn’t have time to go to the bathroom these days, much less write letters to anybody, and if I did, I’d be asking them for autism funding. I told him he should be phone-stalking families without disabled children, and to please take us off their calling list. Then I hung up. I’m not proud of my behavior.
I’ve also recently taken the Lord’s name in vain when my round the corner neighbor decided it was kosher to let her three bear-dogs run unleashed to her car, cornering me against the bumper of an old Volvo as I tried not to wet myself. My final recent act in my trilogy of rage was when I screamed at a teenager who almost rear-ended me at a stoplight, her attention diverted by her lap, from which I’m certain she was texting some fabulous boy. For that one I waited for the light to turn green, rolled down my window, pointed at her and screamed “Stop texting, you almost hit us, my child is in the car. MY CHILD!”. I held up at least a dozen cars for about ten seconds, a lifetime at a traffic light. I watched her face crumple and her companion slump into her seat, and I was glad. Of that incident, I am proud.
By the way, not a single car beeped at me to move. Not one.
I used to be a much nicer person, a kinder, gentler soul. I am the first-born daughter and oldest grandchild on either side of my family tree, and as such, I inherently felt it was my duty to be responsible and follow any rules imposed upon me. The first third of my childhood I was enveloped in affection, as we lived with one set of grandparents, plus an aunt and an uncle, and saw the other side of the family at least two-or-three times a month. I held the throne of only grandchild for four years, and was spoiled relentlessly in my singular monarchy. Due to the vast quantities of unconditional love I experienced as a youth I had a fairly well-developed sense of self, an attitude that would carry me through the garden variety tough times that every school child experiences sooner or later. I remember complaining once to my grandma about a mean girl (there is always, eventually, a mean girl), and she responded that instead of thinking of myself I should feel pity for her, because clearly her daddy didn’t love her enough, and she was just trying to get attention any way she could. The explanation didn’t make much sense to me at the time, but now, as I see everything through the lens of a behaviorist, it makes perfect sense to me.
My grandma was an elementary school teacher. Apparently you don’t require a psych degree to discern motivation.
So for the longest time I didn’t really feel rage if things didn’t go well in my life, if a boy thing didn’t work out, or a job fell through, or my favorite American Idol contestant got voted off too soon for picking a song his granny really liked instead of singing the tune that was actually appropriate. I handled things. I worked them through. I was a nice girl.
I guess my capacity for rage began when my husband and I began fighting the fertility wars. I clearly remember being enraged that idiots all around us were procreating, leaving kids in oven-like cars overnight, abandoning them, putting them on that TV show where the kids ran the town (remember that train wreck of a show?), and we couldn’t even muster up one tiny baby. We weren’t ancient, were decent people, and were probably the only couple our age in America who had never done drugs (on my part it wasn’t about being noble, I was simply convinced I’d take one toke of pot and be hooked on crack by week’s end). I can clearly remember most of my anger was fueled by one single thought. This isn’t fair.
This concept of fair followed me after the diagnosis of autism of my own firstborn child, was the underlying thread that fueled my anger in those initial days. I’d followed all the rules, both written and unwritten, in order to gestate him healthily during his nine month hiatus in my womb. I’d attended the classes, breastfed even though it was torture (in medieval times if I hadn’t been of a noble class and able to hire a wet-nurse, my kids would have starved to death). My husband was a good man, paid our taxes, even did his own laundry. We were nice people. We would be good parents. It wasn’t fair.
By the time our youngest child was diagnosed (which you’d think would be easier the second time around – it wasn’t), I was still clinging tenaciously to the concept of fair. I still didn’t get it. I wrapped myself in rage, railing that if there’s anything to past lives theory I must have been Hitler AND Mussolini all rolled into one to have incurred such universal wrath. At least in our version of autism, initially my children suffered, and suffered greatly, physically, developmentally, and emotionally. They were good boys. Again, it just wasn’t fair.
Then one day I had one of those realizations, those fleeting “aha” moments that grace our presence all too infrequently. Nothing precipitated it, no cosmic event, no phenomenal quote from an enlightened author. Oprah didn’t tell me to feel this way. It just happened. I realized that my rage, my wrath, the anger that energized me to fight for my kids, to stand up for their rights in school and in the community, was actually a good thing. My idea that things had to be fair, my hope that they would be, was not. “Fair” was tangled up in the rage, preventing it from doing its work, running its course, and eventually being discarded. Holding onto “fair” was preventing me, if even for a moment, to focus on what needed to be done for my boys, from tweaking an IEP to teaching my son to use the potty. Rage can be channeled, employed for a greater good. Searching for “fair” is a useless endeavor, counterproductive to progress. “Fair” was slowing me down. I had to let it go.
It’s a hard habit to break, but I try every day to remember that there are families across this continent, with or without disabled kids, who would kill to have what I have. There is, in almost every case, someone who endures a tougher situation. I attempt to recall this when I am most frustrated, and will particularly have to channel this outlook if that rogue satellite screws up the final “Lost” transmission and I’m forced to watch it on my computer. There will be an extra glass of wine in that scenario, and I’ll just have to repeat my own self-made mantra.
There is no fair. There’s just what is.