December 12, 2010

Lord of the Pins

Posted in Life's Little Moments tagged , , , , at 8:54 pm by autismmommytherapist

It’s part three of Lord of the Pins today, and I pinky swear that this will be the last installment, but what happened this week was just so huge, so monumental to our family, I simply had to write about it once more. We had our second outing at our local lanes, and with one small adjustment to our activity, one seemingly trivial nuance tweaked, everything changed. I’m not sure whether the biggest miracle is that I remembered to inquire as to whether the establishment had a “ball ramp” for its physically challenged players, or if it was Justin’s reaction to the additional equipment. I’ll tell you this though, my boy loves bowling now, barely needed the generally requisite reinforcers to get him to stay through the entire event, and reacted to the timer in a fashion that would have made any ABA practitioner proud.

And I have a sore ass and the pictures to prove it.

This time I had the pleasure of entering our neighborhood bowling alley well-rested and healthy, eager to be a little more hands-on with Justin, as I was certain we’d need to “work” this afternoon nearly as much as we had the previous week. This time “Miss M” came prepared with a pictorial activity schedule comprised of photos snapped at our previous session, so Justin had been “prepped” to understand the cycle of events: bowling, video, snack, bathroom, and exit. I’ve done something more basic with him in the past (trust me, I’ve gotten some interesting looks capturing precious moments in mall bathrooms over the years), and I’ve never really been certain how much Justin understood of where we were going, or if the advance notice really helped. I hoped, since he is generally compliant, that prior notice of what was about to take place might alleviate the crankiness about the entire endeavor, that acceptance about the unfolding afternoon might just facilitate a bit more fun for him.

A girl can dream.

We set up in the same lane we’d been given the week before, and within a minute the proprietor had been true to his word and delivered the silver device that would hopefully expedite our ball du jour’s travels, and thus elicit a bit more enthusiasm from our boy. After mentally congratulating myself for not only having the idea but retaining it for AN ENTIRE WEEK we found the appropriate ball for Justin, angled our contraption to try to ensure success, and faded our commands to gestural prompts in an attempt to get my son started. For a brief moment he simply looked at the metallic obstruction and smiled, and I SWEAR he remembered using one at that birthday party years ago. An entire herd of elephants has nothing on Justin’s ability to recall.

I try not to be jealous of my own offspring.

He quickly retrieved his purple friend from the waiting conveyor belt, placed his prize on top of the ramp, and shoved that ball with all his strength with a mighty and enthusiastic “EEEEE!” that filled the confines of the alley with its glee. After “Miss M” removed herself from the photo opp I joyfully slid over to the next lane, forgetting momentarily that the bridge between was the only secure spot for bowling matrons, and promptly landed squarely on two body parts whose heroic sacrifice saved my wrist from serious injury. I stayed down for a moment while I physically regrouped, and was actually able to get a great angle as Justin was eager to finish the frame and was completely ignoring his clutzy, semi-incapacited mother.

Yes, I got some shots. Yes, I’ll share them. And no, there’s none of me on my backside. I’m trying to regain the last vestiges of my pride, cut me some slack.

The upshot is, Justin made it through eight of the ten frames without a peep of protest. When he did eventually complain he had no issue being redirected to the table for his favorite movie scenes, even referencing the timer on occasion to see what amount of his leisure activity was left to him. He completed the last remnants of the game relatively passively, was excited to see the bowling photo shorn of its Velcro attachment on the strip and replaced with representations of those appealing vending machines. He sweetly sat back down after an attempted escape when we showed him the timer had not yet been reduced to white, and he happily accompanied me both to the bathroom and the car. We ended up spending an extra twenty minutes at the establishment due to his willingness to follow the new rules, but the greatest accomplishment that day had nothing to do with mere compliance. Yes, he stayed, and yes he listened to his mommy.

But this time, he actually enjoyed it.

As I’ve mentioned before I’m a planner (my close friends and family are collectively laughing at this understatement of the decade), and I’m constantly trying to think of activities that Justin will actually like rather than simply endure because it’s been requested of him. I’m also always hopeful I’ll discover things my son will be able to do when he’s older, when I might not be around to assist him. My grandfather was an amazing bowler well into his eighties, and hopefully those genes (as well as a multitude of others) have skipped a few generations and are firmly entrenched in my boy’s DNA mosaic. I like to think I can broaden Justin’s “fun repertoire” further than overpriced pretzels, musical stuffed animals, and movies from Pixar before I go.

But there’s another imperative here, one I know is equally important to increasing Justin’s tolerance of outings, and it’s this. There are a multitude of things I took for granted before his birth that I now know he won’t participate in, and I like to imagine I’ve done a pretty good job at accepting the situation (never liking it, but yes, accepting it). I am well aware that to retain a sliver of my prior sanity I need to learn to let go, and I try, I really do.

But I’m not ready to let go of this dream, the desire for true inclusion within the confines of my own family’s story. I’m not ready to embrace a future that only includes half of us every time we leave the house, or requires two vehicles for attendance. I’m not at peace with my youngest only having memories of his older brother’s cantankerousness on outings, not comfortable with no opportunity for our entire clan to just revel in being together. At this juncture, I am simply too stubborn to accept defeat.

And the joy of it is, perhaps with a little conditioning, a few new rules, and the wisdom of our “divine Miss M”, my wish might be granted after all.

December 9, 2010

Pins and Needles

Posted in Life's Little Moments tagged , , , , , at 9:07 pm by autismmommytherapist

We made it to one of our local bowling alleys this week with time to spare (remember, I only promised to avoid the “striking out” jokes, so no complaints), with Justin simply thrilled to be going anywhere, even if he was confused as to why “Miss M” was accompanying us. I was in the throes of my thrice yearly bout of bronchitis (I am fond of saying I will one day drown in my own fluids), so was particularly grateful to have help accompany me on this outing. I wasn’t really up to dragging my sixty-plus pound boy around a bowling alley, and I was certain part of this adventure would become physical. Even six months of P90X is not adequate preparation when confronted with my child’s desire to leave the premises.

After a short drive in which I managed neither to get lost nor cut off by any of my Jersey comrades, we finally pulled into the almost vacant parking lot. “Miss M” commented on the fact that we’d probably have the place to ourselves, so no matter how Justin reacted to our plan, it wouldn’t matter. I gently assured her that even if it was a full house and it took both of us sitting on him to make him stay longer than ten minutes, I was game. I’ve long since gotten past the “staring” that occasionally occurs when we’re out in public, generally return the looks with a smile I find more times than not is eventually mirrored. I feel there is so much hanging in the balance here, as I’d like to continue doing things together as a family outside of our home for more than half an hour, and I could care less who witnesses what we have to do to achieve this goal.

Hell, whether or not you have a child with any type of disability, try to give yourself the present of not giving a damn what other people think. It’s truly the gift that keeps on giving.

“Miss M” and I break into a run as Justin briefly slips my grasp in the parking lot and rushes toward the door, and we smile at each other in the knowledge that at least Justin is initially eager to try this activity, knowing that attitude will help this scenario immeasurably. After a brief skirmish in which we convince my eldest child that he does indeed have to wear his fancy bowling shoes, we are soon set up in our very own bumpered lane, and outfitted with a ball commensurate with Justin’s hand size and weight. We have come prepared with a timer and rewards, snacks, videos, and a DVD player that (in theory) should be extremely reinforcing to him seeing as how they’ve been withheld for days (a time period which seemed to his mother to last for decades). I am confident that after a mere few frames, no matter how successfully conducted, my boy will be eager to raid the vending machines and leave. Hopefully, these enticing items will encourage him to stay and finish one entire game of bowling without a full-out tantrum.

“Miss M” drops our gear and digs right in, taking Justin firmly by the hand and leading him to his waiting purple sphere, encouraging him to put his entire body into the two-handed push that sends his ball spiraling on its intended collision course. I notice my boy is smiling, has perhaps recalled his one prior attempt at this game, and is at this moment happily enmeshed in the semi-novelty of the experience. He watches quizzically as his mother and this relative stranger dance up and down gleefully when he knocks out three pins, and is fairly compliant when our BCBA du jour reroutes him from an attempted escape and returns him to the machine preparing to regurgitate his equipment. We’re only seven minutes in. I figure I have about ten left before this turns ugly.

As I thought, I am correct.

Three frames in (one more than I predicted, perhaps I’ve made some headway with him this fall after all), his majesty is clearly finished with this activity. He grabs my hand while simultaneously attempting to balance on one foot and shed his velcroed footwear, then heads for the exit, grabbing his trusty “goody bag” on the way to freedom. Out of the corner of my eye I see “Miss M” swoop in, grab my child and bag and redeposit him and each item in their prior positions, then place my son’s extremely reluctant hands back on his waiting orb to attempt frame four.

If there’s ever a Bowling With the Stars, I doubt we’ll be tapped for it.

This time after releasing his ball to its destiny our BCBA diverts him back to the table with its promise of food and film, and Justin is momentarily diverted from his desire to leave (although OF COURSE his favorite DVD decides to mutiny on me). “Miss M” offers him the snack he’d usually trample me to gain access to, which of course he refuses, and I’m guessing it’s because he’s already seen the snack machines with their seductive allure of virgin carbohydrate territory. Instead, he’s somewhat placated by a second tier movie, and our autism expert also makes sure he sees the timer with its red block of unspent minutes, ascertains that Justin marks its passage as it winnows down to white.

When we reach zero, we three move forward to another frame, and continue this dance until we make it through to ten. “Miss M” is unfailingly cheerful until the bitter end, through my son’s verbal protests (just because he can’t talk does NOT mean he can’t show us how pissed he is), his artful escape attempts (he made one move any NBA player would be proud to adopt), and his all-around general crankiness. At the conclusion of our game she remains full of energy, positive in the progress we made as we reward our boy with his coveted assault on the snack machines.

I, while mentally encouraged, find my body silently begging for Nyquil.

After Justin inhales his snacks (yes, we treated him to two, he lasted forty-five minutes somewhere outside of his home, it’s his equivalent of a parade), we show him the colorless timer once more, tell him it’s time to leave, and escort him to the door. Through my congested haze I’m hopeful on the short trip home, willing to entertain the thought that perhaps we can teach my boy to remain places for longer times, condition him to enjoy more events. Achieving this goal is crucial to me, the same way encouraging him to sleep through the night (Amen!), ride in a car without protest, and use his communicative device rather than his fingernails to get his needs met, have all been of significant importance in the past. With the holidays looming I know we’ll have ample opportunity to try out our behavior plan, particularly at Christmas when we invade my sister-in-law’s home and take turns monitoring Justin. Perhaps this year we’ll make it through the appetizers (and only one glass of wine for mommy), and actually enjoy ourselves. I’ll keep you informed as to how it goes.

I’m just glad that prior to giving birth, I didn’t know that having fun with my kid would be so much work.

August 2, 2010

Comparisons are Odious

Posted in My Take on Autism tagged , , , , , at 6:30 am by autismmommytherapist

Both of my sons have been fortunate enough to be the recipients of many hours of well-planned and well-executed Applied Behavioral Analysis, conducted in two different states, through several different agencies, by over a dozen therapists. All of these therapists had their individual talents and strengths, and knew exactly how to play to them. Several were gifted at ITT, or intensive teaching, chipping away at the deficits my oldest son possessed and replacing them with coveted skills. A few were phenomenal at working with my son in the NET, or Natural Environment Training, teaching him to generalize those skills to a new location while employing different materials. Some of them were frankly brilliant at discerning exactly what reward was required to motivate my reluctant child on any given day. One or two were experts at everything.

We were lucky enough to have one particular therapist who was talented in all aspects of ABA, with the added bonus of being a mother to an autistic child herself. In addition to helping me become a better therapist she often gave me “life tips” that were invaluable, contacts to an agency, advice on how to handle travel or a particular behavior, or sometimes just counsel on how to get through the day. She had a wonderful rapport with Justin, was one of the few teachers he would voluntarily embrace when she came to the door to work with him. She was an extraordinary practitioner, Ivy League educated (which does not always translate to practical skills, but in this case, did), savvy in the ways of wooing autistic children to work, and in general, an exemplary human being. Plus, she was funny as hell, a bonus to me as I spent many hours a week with her. By that point, I really needed a laugh.

One day, a few months into her tenure with us, she told me a story about something that had taken place years before in regards to her own child’s therapy. It seems one of the women sent to work with her son also had another client a few towns over who was exactly the same age as our therapist’s son. For whatever reason, on this particular day, this woman thought it would be appropriate to share that the child in that other town was making much more significant progress than our therapist’s child, and that said progress must be due to parental involvement. She was adamant in her belief that if Justin’s therapist tried just a little bit harder, her son would also be talking, acquiring skills faster, behaving better.

Truly, I’d like to hunt that woman down and have a chat with her.

Ironically, I’m often on the other side of this story these days with Zachary. People both inside and outside of the “autism business”, those who know that he is mildly affected, are generally stunned by his progress, his efficacy with language, his plentiful eye contact, his evocative imagination. Individuals who do not know he shares the same condition as his brother have often commented on how grateful I must be that he has been “spared”, and are shocked when I tell them this just isn’t so, that barely a year ago he was practically mute, unable to complete the most basic of skills, a wisp of his former gregarious self. In both situations I am generally praised for how far he’s come, at the choices I’ve made for him, for all the hard work I must have conducted with him. Usually I just smile, but I am incredibly uncomfortable at these declarations for two reasons. In part, I know in my soul that Zachary’s miraculous conversion is predominantly due to the fact that his brain was simply able to recover his lost skills, his desire to communicate, and his need for social interaction. I’m also in discomfort when I hear this praise because I immediately think of Justin, who has come just as far in his own way, but would never be mistaken for a neurotypical child, even on his best day.

The truth is, Justin had far more intervention than Zachary had, in part because he was diagnosed five months earlier, and in part because at the time he was my only child, and my only concern. Justin was in a thirty hour a week behavioral program before he turned eighteen months old, which is a rarity now, and was unheard of in 2004. My husband and I hired a fantastic Board Certified Behavior Consultant to train me, and we had a few therapists help out several hours a week. My mission in life was to ensure he spent every conscious moment either engaged in therapy or at the very least interacting with someone, and for the most part, I succeeded in my desires. When we moved to New Jersey we had the collective experience of employees from the Douglass Developmental Disabilities Center, one of the most well-respected agencies in the state. In short, he had both the Cadillac of interventions and an obsessed mother who spent every waking moment trying to eradicate his autism. I thought we could “save” him through sheer effort and will-power, that through our collective efforts he would reside in the land of the 10% of children who recover, or the 20% who lead some type of independent lives.

If you’ve been reading this blog at all, you know he does not live there.

I guess in the end, I have this to say. Early intervention and diagnosis are both crucial to the arc of progress a child will make. Quality and quantity of said interventions will have an enormous impact on acquisition of skills, the opportunity to develop a system of language, the desire and ability to engage in the most basic of human interactions. I’m not refuting any of this, nor in disagreement with the myriad studies that support these statements.

I am, when all is said and done, a science girl after all.

The truth is though, in the end, Zachary walks in our world because he has the ability and desire to be there. I am thrilled for him, for the opportunities he will now be afforded, the chance to make friends, integrate into a “regular classroom”, drive me insane with his constant questions and demands. I welcome it all.

But I know in my mother’s soul, he is here in large part because whatever type of autism he has allowed him these opportunities, that all the hours of working with him contributed to his defection from a pure world of autism, but are far from the only defining reason. I am just as proud of him as I am of his elder sibling, the one who has striven so hard to eradicate his aggressive urges, who struggles every day to repeat the smallest of syllables, who envelops his parents in affection and appreciation on a daily basis. In my eyes and in his own way, Justin has come just as far as his brother, on his own curve, and in his own time.

And as I think of that woman, the one who brought such unnecessary pain and self-doubt for a brief period of time into my friend’s life, I am reminded of an age-old adage, one that for once, is absolute truth.

Comparisons, indeed, are odious.

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