October 31, 2016

An Open Mind

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , at 11:16 am by autismmommytherapist

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Twelve years ago this month I walked into our pediatrician’s office with my then seventeen-month-old son in tow hoping for a prescription for reflux; I walked out shaking, crushed by our doctor’s callousness, and clutching four misstapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand, and left the room.

He wasn’t our pediatrician much longer.

I remember being in shock as I left the office, as we’d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription which would at least let me help him with something that I called upon my experience with the few autistic children I’d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.

As they say on “Game of Thrones,” I knew nothing Kim McCafferty.

The year was 2004, when Jenny McCarthy and “recovery” were hot in autism land. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn’t interacting with my son researching autism on the internet, and God was it confusing.

There were parents claiming the only positive outcome of this diagnosis could be a cure that led to recovery.

There were autistic advocates and parents of autistic children claiming an alternative neurology cannot, nor should not, be cured.

There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk, and should always be employed.

There were professionals informing me that alternative methods should always be explored, matching the child’s strengths to the appropriate communication system.

There were parents telling me not to vaccinate.

There were physicians telling me I’d better vaccinate.

There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.

There were teachers sharing with me that despite the push for it mainstreaming might not be the most important goal regarding my son’s future education.

As I look over my list, I realize not all that much has changed in a dozen years.

I did my best by Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son’s insomnia, aggression, gastrointestinal disorders, and his religious adherence to having things a certain way that would ultimately earn him a dual diagnosis of OCD and autism. My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.

Ultimately what I clung to to get through it all were my choices regarding Justin’s treatment, usually based on articles I’d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.

I displayed my own rigid behavior regarding that information. According to studies I’d read sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were severely delayed. I was told that he should absolutely attend a public school program both for the chance he’d mainstream, and so he’d make friends with neurotypical peers.

And if it weren’t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions I would have done my son far more harm than good.

After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!) I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then twenty-two-month old might actually end up with a way to communicate his needs other than by mostly crying.

If I hadn’t listened, he might have spent many more months often frustrated by his mother’s inability to read his mind.

I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn’t want him sent out of district. At the tender age of three I wanted him to have opportunities to engage with neurotypical peers because I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven “baby weight” pounds or consuming large amounts of chocolate every day.

Okay, that last is still an important goal.

After four years in two different public school districts it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn’t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn’t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he’d frequent daily during his eight week summer program.

I know, we’re spoiled.

I’m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn’t), often employing a “what would Zach/Justin do” mentality when considering my options.

And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of “what should be.”

But as with many things in life I’m still a work in progress, and keeping an open mind is one goal I plan to keep.

 

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December 7, 2012

I Spy

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 12:19 pm by autismmommytherapist

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His grainy image scrolls in and out on the screen as his wonderful case manager attempts to secure such modern technology (this is a new device for me, as baby monitors with video were not the in thing when Justin was born), and finally, she triumphs. I see my smallest son come into focus, sitting compliantly at his table, listening to and executing instructions with ease.

Zach has no idea he’s being watched, is oblivious as the camera picks up his every move and sends it out to me. I smile to see him so engaged in his center’s activity, am curious to see how his transition will go to the next one. I am securely ensconced in the hallway, because if he knew I was watching him, it would be game over. I am excited, because this is the first time I’ve even seen one of my kids in “education action”.

Fingers are crossed it goes well.

I know that his case manager is often in his classroom checking up on him and her other charges, so I ask her if this behavioral shapshot is fairly representative of his overall behavior, and she says it is. I turn back to the monitor and watch as he nonchalantly finishes his work and moves to the next area with ease, ready to accomplish his next task.

He does this without drama or fanfare (a rarity in our household as often I feel we live on Broadway), even brings out some dance moves as he finishes early, obviously needing to burn off steam before the next round of activities.

In my thirty minutes of spying I watch him initiate conversation and follow through with two different children. I am pleased to see one of his teachers differentiate instruction in reading, as Zach is way past “identify this sight word”, and needs to be instructed in that area with “real” books. I notice how immersed he is in each task set before him, witness that small smile of pride as he basks in the verbal praise he receives.

It’s clear that Zach is happy here. He’s being challenged appropriately. I’ve been able to score several playdates with him, and he’s making friends, a skillset I’m noticing has carried over to the classroom.

My boy is happy.

I think back to the summer, when for a large part of his educational hiatus I wondered if we’d ever get to this point. Every time I turned around there seemed to be a tantrum, an argument, or just extreme crankiness (and these were exhibited in places where he was supposedly having a good time). As much as I love this child, I’d have to say I was embroiled in extreme parenting this summer with him, trying to walk the line between latitude for so many changes (new impending school, new camp), and not letting his manners run amok.

I wish I would have known this was possible (I have yet to relinquish my desire both to know and alter the future), and am grateful we’ve reached this mecca. He’s thriving. One might say, and it’s a phrase often bandied about in education, that he mostly appears “indistinguishable from his peers”.

And while I hope he continues to grow here, to soak up all the knowledge and social cues and praise so integral to his progress, I also hope he remains his unique and singular self. Zach’s a child equally at home with wielding a sword or spending an hour entrenched in poring through Ranger Rick magazines that remain way beyond his reading level.

He asks questions about exoskeletons, which are immediately followed by a query about my happiness as the sole female in the house. My youngest child is generally exuberant and inquisitive, as well as impulsive. I never want to drench his fire just so he can meld into the crowd.

I hope he’ll continue to wield those dance moves with impunity.

After half an hour I feel we’ve seen enough, and together my co-spy and I close up shop. I thank her for the experience, and wend my way through the long corridors back to where I think the main office is located, and contemplate the rest of my morning before my son returns home. As I head toward my car my thoughts turn toward Zach, to all that today’s “show” promises for him. Happy. Engaged. Still himself.

It’s all I can ask for.

November 23, 2012

Read-aloud

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 3:06 pm by autismmommytherapist

“You’re here, I didn’t even see you!” Zach yells across the room, as I enter the colorful and organized domain of my son’s kindergarten classroom. I smile and reply “yes, Zach, I made it”, as if there’s any other place I would be on the day I get to read a story to my son and his classmates. Since it’s late October I even have the bonus of being able to wear Halloween attire (just a shirt, I’m not going completely overboard), and of course our reading fare is spooky-themed. I tuck my purse into the corner and watch as my boy’s wonderful kindergarten teacher settles twentysomething whirling dervishes on the large “morning circle” rug, then take my seat with material in hand.

I immediately have flashbacks to my teaching days (the good kind).

Zach is told he may sit next to me in my “seat of honor” perch, and I can see  as he slides into his chair that he’s almost vibrating out of his little body with excitement. Before I settle him down a bit I make a mental note to remember this moment when he’s fourteen, and I transform into just his ‘stupid mom’. I begin speaking to the class, although the little bugger has already stolen my thunder a bit by telling all of his friends that I used to be a teacher (although once a teacher, always a teacher).

I forge on ahead anyway with my introductory spiel, and I watch as at least half the children’s eyes grow wide at my confession, particularly when I share that my students’ ages were in the double digits. They listen raptly, and I realize I’ve come to have a greater appreciation for the younger set, one I truly only developed after having my own children.

My rule about only instructing kids who are old enough to get my jokes remains. I still have my limits.

I begin reading “Room on the Broom”, one of Zach’s favorites that he knows inside and out, and I can literally see my son struggle to contain his emotions, he is so enthusiastic about my presence. I remind myself that this is still a vast improvement from his pre-school days, where as soon as he spotted me in any audience he’d well up with tears, then cry unabashedly when I left (a situation usually rectified as soon as he had a snack).

Today however this experience for him is just pure, unadulterated joy, with his desire to merge his most important worlds of parents and school just slightly overwhelming him. In an effort to help calm him a bit I quickly request permission to allow him to help me read our ghostly literature, and thankfully his teacher complies. And after at least a dozen interruptions, several “Boos!” and multiple unauthorized trips to the water fountain, we eventually conclude story time.

He’s still thrilled. I am exhausted. I remind myself that this is what I get for having him at forty.

My “fifteen minutes of fame” is over, but I’m thrilled to have been invited to his classroom, to win a window into the world that is my son’s place in a mainstream classroom. I thank the children and gather my things to make a quick exit, my boy blowing kisses at me as I leave, while the professionals behind him help him resettle with his peers. He is clearly thriving there, and I’m so grateful to his educators for truly “getting” Zach, for liking and accepting him the way he is, while simultaneously teaching him how to rein in his exuberance just enough to function appropriately in class.

Truly, this is the crux of all my angst and worries about him. I ponder daily how to encourage him to be exactly who he is, yet help him channel his energies so he can have the things he covets- positive attention, true inclusion, and friends. He stands out a bit, particularly with that energy level that just won’t quit (if only I could siphon some of that off for me), but it’s clear this facet of his nature is viewed as just a part of him. My boy is seen as a whole person, not broken, not in need of being fixed. It’s obvious he’s in a safe place, one where he can be free to be himself, yet learn the ways of the world without those strictures dissipating his true essence. Zach has lucked into a classroom where differences are not just tolerated, but celebrated. It’s clear he’s viewed as perfect the way he is.

And I think to myself for the millionth time how wonderful it would be if we all treated each another that way, if one day the world would just catch up to kindergarten.

September 5, 2012

Kindergarten Rules

Posted in Life's Little Moments tagged , , , , , , at 10:24 am by autismmommytherapist

I lurch to the left as I try to reestablish my balance, almost bowled over by my youngest son as he wraps his body around my lower torso. Zach and I are on line to gain entrance to his new school for orientation day, and although we visited both of his teachers and their classrooms in the spring, I can tell he’s experiencing a high level of anxiety at the moment. I reach down and gently peel him off of me while grabbing his hand to comfort him, and tell him in a few minutes we’ll be inside. I remind him he’s already met his teachers and most of the other children haven’t, and he smiles at this opportunity to be “first”, which is always so important to him. His death grip on me relaxes a bit, and I see a small smile flash across his face at this knowledge, and know I said the right thing.

My last child will be attending kindergarten tomorrow.

A few minutes later we are allowed inside, and we promptly cycle through the day’s activities. We begin our adventure in the classroom where he’ll hopefully be mainstreaming first thing every morning, and I can tell he’s completely overwhelmed by the experience from his absolute silence. He’ll be with nineteen other kids (which is a huge class size for him), one regular education teacher, and one special educator. Both teachers are exceedingly warm and welcoming to him, and after a brief spiel about his upcoming year we are dismissed to the general assembly. I look down at Zach in his small chair which I know he will soon outgrow. I see my son being uncharacteristically still, taking everything in very seriously, with occasional glances across the room at the one child he knows from pre-school.

In both the regular ed class and the self-contained he has a friend, and she’s wonderful. For that, this mother is eternally grateful.

Eventually we make it through the almost hour-long assembly throughout which Zach paid vigilant attention, and we conclude our visit by dropping by his self-contained classroom, where he will go every day after his mainstream experience. Once again, his teacher and aide put him at ease and engage him immediately, and soon he is immersed in an art project, glancing now and then at the students around him, then returning to the task at hand. Throughout the morning he plays nicely with the other students, and cleans up when asked without protest (!). Each time I prompt him to say thank-you to one of his excellent educators he does so willingly, and grants them one of his rare bear hugs which his mother so covets.

He’s nervous, and a bit shy around the other kids. But I can tell he’s excited too, and with Zach, that’s more than half the battle.

I give both teachers a small “dossier” on Zach, things I think will help him acclimate, details I would have wanted to know about a student when I was a teacher. It’s still strange for me sometimes to be on the parent side of the table, but this position also comes with invaluable insight, and I remain grateful for my educational experiences as they’ve helped me to be a better parent.

Most of the information I’ve shared is practical. Zach is on a special diet. His impulsivity and ability to contain his emotional responses to situations will be his biggest challenges. I also try to convey in words how loving he is, how his first instincts in any social situation are to befriend someone, and to help whenever he can. These facts are just the bare bones of what makes my boy special.

I know I could never completely explain how brave he is, how his willingness to try new experiences this summer, mostly without incident, have amazed me. He soared at his new camp, so much so that the instructors have given me the green light to try sending him next year without a shadow. He conquered his fear of the ocean this summer with his boogie board, braving bigger and bigger waves as the season waned. He even briefly tried a vegetable, which did not lead to a repeat experience, but there’s hope.

Truly, there’s just so much hope.

Eventually the day concludes, and I lead my small-but-growing-up son back out to the parking lot, his hand clasped firmly in mine. He tries to remove it but I insist as cars start to pass us by, and he relents. I know this is only the beginning of the many “pulling-aways” we’ll experience, and I’m grateful for the moments we still have, for the fact he told me the night before that he was scared, that he can articulate his feelings with me. He seems at once so old and so young to me, and I am certain I will experience this feeling many times in the years to come. At this moment I’ve never been more proud of him.

My last child is going to kindergarten.

June 16, 2010

Force of Habit

Posted in My Take on Autism tagged , , , , at 9:41 am by autismmommytherapist

Lately, I’ve been spending a lot of time in the closet.

I’m not contemplating a late-in-life team change, although the opportunity for round-the-clock conversation and shopping is enticing at times. No, I’m talking about my son’s latest OCD/perseveration habit. This newest exercise begins with Justin escorting the nearest adult (usually me) to our pantry-cum-toy-closet with a giant push to the small of the back. It terminates in him shoving a faux laptop/plush toy/musical instrument into my waiting hands, vaulting my arm toward the desired space on the correct shelf in the pantry, and then him waiting to see if I can discern the exact angle in which to replace his discarded object correctly. This has been transpiring for a few weeks now, is conducted several times a day when I can’t get him (or some poor unsuspecting rube) to act as my body double, and is an activity I find to be soul-grindingly irritating.

We’re working to rectify the situation of course (that is, when I’m not trying to get both kids on their separate busses in the morning, vehicles that invariably show up within seconds of each other as I stand at the end of my driveway pretending I can still discern the tiny numbers inscribed on the side of each hurtling yellow savior). Most of the time I can instruct Justin to replace the offending item himself, and after I’ve blocked his arm from my coccyx region several times in rapid succession he gets the picture, and dejectedly runs to toy heaven. If that doesn’t work, I can often just gesture toward the waiting shelves, and he’ll get the hint. Sometimes, when pointing and verbal prompts don’t do the trick, I have to physically move him there myself and command him to appease his own obsession, which he often does. I am committed to breaking him of this habit, as I have so many other annoying ones in the past.

And sometimes, when I contemplate what I’m doing, I feel like a big, fat hypocrite.

Over the years, I’ve asked my son to change a lot of his deeply ingrained desires. There was the potty training year(s), where I required my oldest child to stop watering our Berber carpet with his urine two dozen times a day and instead relieve himself in the apparently offensive toilet bowl, a habit which almost tipped the balance in his mother between social drinker and full-blown alcoholic. There was the pleasant habit of his screaming every time I tried to strap him into his car seat from birth to two (except for when he was an infant and slept in it, a habit we thought we might not break until he hit puberty). There was of course my personal favorite, the “pinch the first living thing within reach when denied my way” habit, which I’m proud and grateful to admit his family, teachers and therapists have predominantly exterminated, mostly due to our collective adherence to saying “no” and meaning it.

There have been many undesirable customs over the course of his lifetime, and I’ve made it my mission to stamp out the most heinous whenever possible. Of course, it’s occurred to me that many of these habits are only annoying to those in close proximity to Justin, not to Justin himself. Sure, some of them would prevent him ultimately from integrating himself into society in some fashion, but most just annoy the crap out of his parents. Essentially, on many days, I’m asking him to change to save my sanity, not to better his life per se.

Truthfully, on most days I’m not worthy to ask him to modify his behavior in any way, shape or form. If I had a dollar for every time I’ve sworn to reduce my daily dark chocolate intake (hah!), or said I’d clean up the piles of paper and useless junk I swear reproduce like amoebas on my dining room table, or followed through on my promise to rid my car of garbage that has taken permanent residence since American Idol was still a compelling show, I’d be a wealthy woman. Perhaps I could afford that state-of-the-art group home for adult Justin after all.

Truly, most days I can’t shape my own behavior to save my life.

So, I’m still going to try to exterminate these undesirable routines, the ones that set him apart and grate so noisily on his mother’s last nerve. I’ll attempt to at least reduce them, to employ my knowledge of behavioral techniques so that his actions are more “acceptable”, more mainstream. I’ll try.

But I’m also going to summon a little more compassion for whatever it is in his brain that compels him to do these things, and remind myself that he’s not doing them to evoke a “nails on a chalkboard” reaction from me, that he’s just enacting these behaviors because to him, it feels good. It’s not about me.

It’s never usually about me.

I’m also going to remember how often I fall short in molding my own habits, how so many of my desired regime changes go out the window annually by Valentine’s Day (if I make it that far). Research shows it can take hundreds of trials to alter behavior in a neurotypical human, and perhaps thousands of attempts to shift behavior in autistic ones. What I’m requesting him to do is really difficult, particularly because I’m quite certain he has no understanding of why the action is offensive in the first place.

So, I’m going to give increased compassion toward Justin a valid shot, and perhaps one day I’ll really tackle those procreating piles on my beleaguered dining room table instead of sneakily stuffing them under the buffet when guests come.

Wish me luck, and don’t hold your breath.