April 10, 2011

Resurgence

Posted in My Take on Autism tagged , , , , , at 8:15 am by autismmommytherapist

SLAM!!!!!  Zach and I jump a bit as we’re sitting at his art table, and I quickly smile both to hide the fact my heart has briefly stopped, and that I am completely exasperated. It is, perhaps, the THOUSANDTH time Justin has slammed the closet door this afternoon (okay, slight exaggeration, but it FEELS like it), and my patience is frayed to its ragged, disintegrating ends. Zach asks “What is Justin doing, Mom?”, and I reply “organizing his toys, hon”, but secretly, I admit to myself I really have no idea. While the lion’s share of the playthings from the closet have been exiled to the garage recently due to Justin’s escalating OCD, he has still managed to find something in there to rearrange- namely, his plush toys. Although the positions we have discovered them in have been mildly amusing to me and his father, our overriding emotion upon witnessing this returning obsession has been dismay, and sadness.

For so long, he had been doing so well.

Over the years, as I’ve spoken to people about my eldest son and his neurological disorder, I’ve found most conversations end up centering around his lack of speech, and how difficult that must be both for him and our family. While I don’t want to minimize this deficit (believe me, there are many days I wish the child could just TELL me why he’s rivaling my PMS-state), it certainly has not been his greatest impediment to functioning in the “real world”. Even the aggressive moments that plagued us, his therapists, and his teachers over the years were scattered enough to be “livable”, until the end of his sixth year when the incidence increased so greatly we sought the assistance of medication for him.

Although the non-verbal aspect of his autism and the pinching have both been considerably daunting, the single greatest component of his disorder that affects his life the most is the OCD/ perseveration. It’s what clued me in at his six month birthday that something was amiss (when your infant chooses to spend his entire day spinning a faux fish bowl throughout the hardwood floors of your home, it’s time to contact that developmental pediatrician). His predilection for rotating objects, rearranging photos around our home, or hiding one shoe from a pair in absolute obscurity (his mother’s personal favorite) prevent him from engaging in more appropriate pursuits, effectively limiting his world to a minimum of activities.

There are mornings when I almost have to carry him out of the house to get him on the bus, and not because he doesn’t want to go to school, because he’d live there and marry his teacher if he could. It’s simply that the random pattern of paper slips, and oft-ignored Xeroxed reminders on our chaos of a kitchen table are not arranged to his liking, and he can’t leave until they are. Perhaps it is that I have erroneously placed a new photo of he and his brother in the family room, rather than mid-way upon our living room bookshelf at an angle that is just so. After all these years I still cannot discern the precise patterns he is striving for, and his penchant for order is enslaving him. There are many days his closet machinations would leave him in tears if we weren’t constantly redirecting him, in our own attempt at ritual.

There are as many days that little face, desperate in his desire to get it “right”, engenders tears in me as well.

The thing that brings me and his father most to despair, is that the OCD comes in cycles, is stealthy in its resurgence. It’s only been the last six months or so that it’s escalated to this level once more, and once again, it doesn’t seem to be precipitated by anything in particular. In the past, it seemed to be high fevers that heralded the return of the full body tics and desire for order that would consume him for a few months, then dissipate. Since he had those glorious ear tubes inserted last fall there have been no fevers, no antibiotics, no palliative measures taken to address the always-accompanying upset stomach that perhaps were the triggers to his obsessive state. Despite all the progress he’s made socially, academically, and emotionally, this bane to our existence, this barrier to his happiness, is simply back.

Of course, we’ll address it to the best of our abilities. We’ve found a new neurological pediatrician with whom we feel more comfortable (and yes, if you’re wondering, she has a waiting room). Jeff and I felt she really listened to us at our first visit, was open to the suggestion we’ve been hearing from several professionals in Justin’s life that he might have a dual diagnosis of both autism, and actual OCD. She’s willing to think out of the box a bit with medications, comprehends the limits of a therapeutic approach, and understands we have thoroughly explored the tenets of ABA to alleviate his suffering. There is even the possibility of enrolling Justin in a study someday, if we collectively feel it will be to his benefit. We’ll return to see her in a few weeks time, and I feel confident all options will be evaluated, that he is in good hands, that my boy is receiving the best care possible.

But I can’t help wondering, if despite all our attempts to quiet the sometime chaos of his beautiful mind, if this is as good as it gets.

December 29, 2010

Purge

Posted in AMT's Faves, Life's Little Moments tagged , , , , , , , , , at 10:34 am by autismmommytherapist

I’ve become a technology queen this year, what with blogging, importing pictures from both our own files AND the internet, as well as mastering the art of the hyperlink (Mark Zuckerberg is running scared, mark my words). My husband has been a (mostly) patient instructor in all of these areas so that I might wear the crown rightfully, has generally ignored me as I’ve complained that the kids sucked out all my technology brain cells at their births, and has instead encouraged me to keep on trying no matter how seemingly insurmountable the task at hand. I’ve got a few skills under my belt now (watch breathlessly as Kim learns to download her own photos in 2011 AND send them to the right people), and have since felt a sense of confidence return to me that this old dog can learn a few tricks, and perhaps recapture those she enacted with ease before her sons permanently incapacitated her memory.

Always blame the kids when feasible.

I’ve been on a roll lately, and since I had some time left before my little one came home one day, I decided to knock one more technological item off my list in my remaining minutes of freedom before I donned the mommy mantle once again. It seems I’ve ignored my bookmarked links, which had subsequently mutinied against me and become an unwieldy mess (it takes me three full minutes to scroll down to my own blog, something has to go). So, I decided in the spirit of year’s end to downsize, a skill I’d actually managed to retain all these years (after Jeff reminded me right-clicking was NOT a fast-track to erasing my entire hard-drive). I grabbed the good chocolate and got down to business, reminding myself this couldn’t take THAT long as I had employed the delete button on numerous occasions since Justin graced us with his presence (okay, I’d done this twice since he’s been born, but who’s counting).

As it turns out, when you haven’t conducted more than a light weeding in seven years, and there’s several hundred bookmarks mocking you, you should really prepare for quite a walk down memory lane. In my own defense, I did leave a lot of these sites as visual prompts for when I was writing my manuscript, but since I finished my tome almost a year ago I don’t really have a lot of excuses left for my laziness. So I encouraged myself to indeed let go, and then I got down to business, deciding to go in chronological order for old time’s sake.

We’re just a bastion of spontaneity chez McCafferty.

As I banished each site to the etherworld, I briefly placed myself back in the time period where I had felt it necessary to have that information, perhaps even deemed it vital. With hesitation, I recalled the fear I’d felt in those last few months before Justin’s diagnosis as I clicked to that first excellent site I’d discovered, the one regaling me with early signs of autism that seemed to embody so much of my oldest’s son’s behavior.

Delete.

I recalled the desperation I’d felt when searching for words to reveal to me the mysteries of autism’s causes, and my frustration as the word “unknown” seemed to mock me at every turn.

Still annoyed delete.

I smiled ruefully as I perused the half-dozen screens promising refuge from the scourge of colic, none of which alleviated a single symptom in my boy.

Vengeful delete.

I didn’t even bother opening the myriad pages describing different therapeutic approaches all touting progress, because we’ve immersed ourselves in ABA, and it’s made a profound effect upon my child’s behavior.

Confident delete.

I right-clicked on numerous sites promising the best party supplies EVER for a one-year-old’s under-the-sea theme birthday party, and remembered how I knew in my soul this would be the only party Justin would ever have where he was just a difficult child, not one with a diagnosis as well.

Sigh, and delete.

I laughed as I purged the site revealing the caloric content of Starbuck’s lighter liquid fare, both for my idiocy for caring, and my remembrance that for many months that walk down that long hill with Justin for a break from ABA was my (and truly, our), single daily saving grace.

Joyful delete.

I briefly opened a few of my bookmarks related to the “autism diet” to see if anything new would hit me, recalling how I concocted homemade chicken nuggets from scratch for my reluctant eater for over a year, despite my cooking disability. I remembered my despair when it became apparent Justin was not a “responder” to his new food repertoire, and my elation when the removal of gluten and dairy seemed to appeal to Zachary’s troubled tummy.

Somewhat grateful delete.

I had to pinch myself from rereading all of Doc Jensen’s insightful LOST missives, reminding myself I had a kid getting off a bus in ten minutes and that this iconic show was indeed, despite my devastation, over.

Wistful, soul-sucking delete.

I brutally purged the sites where we ordered the pH strips we used to discern if Justin had left even a drop of urine in our toilet bowl during our year-long potty training debacle, the flimsy papers we’d used in our hopes we’d one day reward him for a single success before he turned fifty.

Exhausted delete.

Next to go, sites which for a small fee would absolutely GUARANTEE our son’s recovery.

Pissed-off, magnificent eye-rolling delete.

And last, but not least, the site with the fabulous review of Speed-the-Plow, the Broadway play we used as a brief escape from our youngest’s regression last year, only to be told upon arrival our boy, Jeremy Piven, was not available to play his role due to illness from mercury poisoning.

For this one, I used the Tina Fey/Amy Poehler SNL “REALLY?!?!?” delete.

The entire activity was as therapeutic as I imagine a good cleanse to be (nope, not old enough for that colonoscopy yet, thank God), and I managed to conduct it in enough time to finish that chocolate and prevent those bus drivers from returning my kid to school. It’s done. Those reminders of the past are gone. Those issues from our past are gone. The only thing remaining is both my gratefulness at having surpassed these problems, and my glee at having remembered how to scourge my bookmarks ALL BY MYSELF.

And for those of you looking to purge, to relieve yourselves of at least some unnecessary worries as we near year’s end, I’ve got one small encouragement for everyone out there.

Just hit delete.

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.

September 29, 2010

Blades of Glory

Posted in Life's Little Moments tagged , , , , at 6:21 am by autismmommytherapist

The doors of the Hockey Palace whoosh shut behind us as Justin and I slowly descend the stairs to the rink below, me clutching his hand tightly, my son with a death grip on the banister as several eager boys rush past us. I can tell he is both excited and confused by my choice of outing, not yet sure what to make of the transition from the humid air outdoors to the frigid climes (okay, I’m exaggerating) of our town’s sole venue for ice skating. In the last six months I’ve cajoled one kid to mount a horse, another to kick a soccer ball, and both to attempt to ride the waves of the Atlantic Ocean. I’m ready for a new challenge, and putting my autistic seven-year-old in shoes with blades, the one who still lacks body awareness and is tentative about climbing stairs, seems to be the next obvious choice in our quest for athletic greatness.

This is not the first time I’ve questioned my sanity.

I’ve been told that Justin needs no prior experience to participate in the Challenger Hockey Program, and since I’ve been letting the skating lessons slide in lieu of ABA and speech therapy, I was grateful for that news. We’ve never been on the ice together before, in part because we just haven’t had the time, and in part because despite two years of lessons and my all-consuming desire to be Dorothy Hamill (yes, I’m that old), I still can barely keep myself upright on frozen water. At this point Justin is more than half my weight, and I’m not even certain I could support him if I gave up the skates and wore my running shoes. To date, I haven’t been brave enough to find out, and the great thing is, with all the volunteers involved in this program, I won’t have to.

Eventually we make it down to the fairly controlled chaos of the boys’ locker room, where about ten special needs kids are patiently waiting for approximately twenty neurotypical buddies to outfit them for the sport. The coach, whom I’ve met before on several occasions when I didn’t look quite so tired, quickly assigns two pre-teen boys the enormous task of sorting through a giant pile of helmets, knee pads, and ice skates so that my son will be protected. Our helpers bound over, say “Hi Justin!”, solicit high-fives from him, and start grilling me on shoe sizes and head width, running back and forth with different options, remaining cheerful even when a piece of equipment comes up woefully short. These boys know their stuff, and as I struggle to remember Justin’s new shoe size, I tell myself to keep my wits about me.

Apparently, hockey is serious business. And I thought being a soccer mom was intense.

To tell you the truth, I don’t really have high hopes this is going to work out for Justin, as I’m not even sure he’ll tolerate wearing something without flat soles, much less the daunting prospect of helmet with chin guard and multiple flaps I’m certain I’ll never disentangle correctly. Over the years I’ve developed a philosophy with the kids that we try everything once, and if we survive the experience and there’s even one moment of joy (theirs, not mine) involved, we’ll stick with it. I’ve also given myself the out that if either child hates the activity, we’ll move on to something hopefully a bit less tortuous. After all, my mom let me out of ballet lessons when I figured out I was the only girl after two months who still couldn’t lie on her stomach and put her feet on her head. I owe my own offspring just as much kindness.

For the next twenty-five minutes, and that is a long time in autismworld, our two new friends work diligently to complete Justin’s outfit. Elbow pads are found, the correct helmet size discovered, the fourth pair of ice skates is the charm. Justin even permits our assistants to remove the head gear twice when we figured out the body armor needed to be applied first, which in and of itself, is a miracle. He only tries to make a break for it twice, but sits down quickly when I tell him we have to wait, consuming two juice boxes which I’m terrified will mean the removal of all the accoutrement if he has to pee. Hell, it took almost half an hour just to get him outfitted, I’ll be damned if this kid won’t at least make it out to the ice once.

Finally, we’re done, and although he keeps slipping off the gloves, which frankly is something he does all winter anyway, he’s ready to go. One of the boys gets on one side of him, I take the other, and together we half carry, half push him to the entrance of the rink. Justin is looking less than enthusiastic about the experience but complies, and before I know it, he is through the door, seated in a chair, and has his own personal chauffeur, a teen-ager far more adept on ice than I’ve ever been, whisking my son around our rented oval like he’s been doing it all his life.

I realize, all I have to do is watch. If I had a frappacino, the moment would be perfect.

There are just so few opportunities when I’m with the kids that I’m not completely “on”, that I’m grateful to be able to simply wipe off a patch of ice and watch my son get whipped around, happy to be able to take in the entire picture of what is transpiring today. I watch, and see a dozen kids in motion, children with all kinds of disabilities, both physical and neurological. Some, like my son, are in the “chair stage”, being pushed around like emperors in their own personal thrones. Several others are holding on to walkers for dear life, escorted by young men clearly enthusiastic to be here at what must be the crack of dawn for them this Sunday morning. A few more experienced lads are actually shuffling slowly on the ice, gaining and losing purchase on the slippery surface, having a ball even as gravity betrays them and they tumble forward. There are over two dozen volunteers here today. They are all teens or pre-teens. They’re here because they love the sport, and because they want to help. I don’t get emotional very often these days, but I feel my eyes welling up, completely charmed by watching adolescent boys thrilled to help my son, and in most cases, other complete strangers, try to participate in a team sport.

And no, I’m not PMS.

Within ten minutes Justin has houdinied off his skates, gloves, elbow pads, and managed to shimmy off a shin guard wrapped around his limb with what appeared to be industrial-strength masking tape. He is clearly unhappy with the situation, and soon he and a half-platoon of boys trying desperately to make him smile have deposited him back at the exit, looking to me for help, hoping I’ll solve the problem. I know I can’t, and that unlike the horses, this won’t be Justin’s thing.

And although I haven’t discovered a new love for my son, I can’t help but walk away exhilarated by what I’ve seen, by the ramifications of today. Without doubt, at least in this town, it is a kinder, gentler world out there for kids with differences. He has more options for fun than he would have had twenty, even ten years ago. People, children, pre-teen boys, actually want to help him participate in their world.

Somebody gives a damn, and I even got ten minutes of “me time”.

As we head back to the locker room where the sweet manager hugs my son and tells me no matter what, we’re welcome here any time, I know today, in his own way, Justin already scored.

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.

July 30, 2010

Swimming Upstream

Posted in Life's Little Moments tagged , , at 6:39 am by autismmommytherapist

“We’re going to make it” I say half to myself and half to Justin, as I pull my somewhat recalcitrant seven-year-old along the rocky path to the swimming pool, where my new favorite person is attempting to teach Justin to swim. It’s his fourth lesson in a series of six, and he’s finally begun to regard this exercise as an experience somewhere in between a teeth cleaning and eating green vegetables. His mother actually finds the former event with him to be infinitely more palatable, as that attempt only occurs every six months.

I’m fairly excited that we’ll make the lesson on time, in part because I’m hoping the director of the Challenger program can achieve our goal, namely that Justin could walk out onto our diving board, fall into the pool, and doggie paddle four feet to safety. She’s fairly confident that one day he’ll get there, and as we’ve had several instructors previously who weren’t so enthusiastic in their future predictions, I’m thrilled I found this place. It’s been worth schlepping up to Justin’s school the next county over and driving him back down here just to see him actually attempt to kick and move his arms, rather than lying like a limp pad thai noodle in our own still waters. It turns out I can teach autistic kids ABA, but when it comes to swimming, I decidedly suck. At least I’m aware of my limitations.

The other reason I’m excited we circumvented the traffic accident near the parkway and made it here reasonably on time is because Justin’s mommy is making a new friend. Generally it would sound rather pathetic for a forty-three-year-old mother of two to be that jazzed up by the possibility of turning a playdate acquaintance into a genuine friendship, but frankly, I don’t get out much these days, and my opportunities are limited. These swim lessons afford me not only the chance to chat with an adult woman who also has two children on the spectrum, but permit me anywhere from thirty to forty-five minutes of freedom while a tough, determined swim instructor tries to imbue my oldest son with the necessary skills to save his own life. To say this time period is a win-win for me would be a gross understatement.

Truly, I’m grateful for this opportunity, and for a few other women I’ve met recently who also hail from Club Autism, not to be confused in any way, shape or form with Club Med. Back in Virginia I literally had only one “autism mommy” I could hail as friend, which was in part due to the fact we moved to New Jersey a relatively short time after Justin was diagnosed, and was also due to the fact that for most of those fifteen months I never left the house. Since my adopted state’s idea of an early intervention program consisted of a mere eight hours of speech and occupational services per month (a collective gasp is now rolling across the state of New Jersey), I was forced to spend the vast majority of Justin’s conscious hours each day trying to encourage him to sign for bubbles. That, coupled with the fact I often didn’t have the chance to shower on a frequent basis, often precluded my attempts to get out and meet other people in similar situations. Deodorant just can’t do it all.

Now that my youngest has turned three (an age I would find far more odious than two if I wasn’t just so damn grateful the kid actually has the ability to talk back to me) I do seem to be able to exit the confines of my home a little more frequently than I did in Virginia, and I’ve met some nice people. I’m not looking for “soul mates”, as there are six women, my kindred coven, whom I’ve been friends with for twenty years or more who fulfill that requirement for me. No, I’m simply been searching for a few good women who not only have children close to my youngest son’s age, but who don’t confuse terms like “sensory diet” and “eloping” with guaranteed weight loss and something fabulously romantic. I think I’ve found a few, women who will understand when I tell them Justin’s been awake since 3:00 AM that day that what I’m really saying is “Oh my God, will he do this forever and I’ll never be able to write coherently or suffer through another P90X workout EVER AGAIN”, women who will remind me gently that even autism is generally cyclical, that it is likely one day I will eventually sleep through the night. That reassurance, that complete understanding of any given situation, is priceless.

And as I hand Justin off to his waiting teacher and curve my way in and out of the picnic tables, the last of which supports the weight of a woman with whom I’ve begun to have an invaluable rapport, I relax, just a little, and enjoy the moment at hand.

June 3, 2010

Guest Blogger Thursday

Posted in Uncategorized tagged , at 8:46 am by autismmommytherapist

Today’s guest blogger is http://www.roostercalls.blogspot.com/

Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents of children with disabilities to provide more practical tips for other parents, and a place to share their views on raising a child with a disability as well. These contributions will be their ideas and stories, and not necessarily reflect the viewpoints of those of autismmommytherapist.

Thursday, November 12, 2009

Happy Thanksgiving, Early

Dear Rooster,
Thank you for tying your shoes tonight. I know it is pretty hard, and I know it takes forever. I know you don’t want to, and I know you don’t see the point when there is so much Velcro in the world. Thank you for trying, thank you for learning to persevere. Thank you for your delightful smile when you finally finished. I’m so proud of you I could bust.
Love, Mom

Dear ABA friend JT,
Thank you for making the Roo tie his shoes, and thank you for teaching him how. Thank you remaining so calm and patient when he screams and throws his shoes. Thank you for seeming completely and entirely genuine when you cheer loudly at every stage of success over the weeks of shoe tying. Thanks for believing he can do it even when there is no proof. Thanks for understanding that shoe tying has nothing to do with shoes for us, because there IS plenty of Velcro in the world, but everything to do with perseverance. Thanks for helping Roo learn the meaning of the word perseverance.
Warmly, Rooster’s Mama

Dear Rooster’s Dad,
Thank you for talking me in to trying ABA for our son. Thank you for getting us into the program through Regional Center, signing up for the course, and spending two Saturdays in a row agonizing through the lessons. Thanks for teaching me what you learned, and for helping me apply it. Thanks for helping me remember to celebrate and be grateful. And thanks most of all for marrying me. Now please do something about those dirty clothes! I love you. Your wifecita

Dear Me,
Remember that nothing is forever; it’s a double-edged sword. Appreciate what you have, and remember not everyone has it. When nothing else works, try humor. And whenever you can, sleep. Now, for instance.
Good night.

Posted by ghkcole at 8:28 PM

May 27, 2010

Guest Blogger Thursday

Posted in Uncategorized tagged , , , , at 9:06 am by autismmommytherapist

Today’s guest blogger is Mary Lachenauer-Craig, welcome!

Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents of children with disabilities to provide more practical tips for other parents, and a place to share their views on raising a child with a disability as well. These contributions will be their ideas and stories, and not necessarily reflect the viewpoints of those of autismmommytherapist.

Hi and Welcome to Autism!

When my son was diagnosed with Regressive Autism; I really felt as though there should have been somebody like Julie McCoy from the Love Boat to usher us into this new community and let us know what activities we had scheduled.  Developmental Intervention party of 2, ABA party of 5; your tables are ready!!!

Little did I know what I really had ahead of me when the insensitive evaluator said as her parting comment, “well at least now he’ll qualify for the Handicapped Preschool”.  Initially, I felt like I wanted to run out into our quiet street and yell that’s the best you’ve got for me?  You’re the “expert” and that’s all you have to offer. Thankfully since that day our family of 4 has been sent numerous angels to help us through our journey on this crazy cruise. I won’t lie to you either some days it feels more like we’re on that fateful 3 hour tour from Gilligan’s Island fame.

My precious Angel’s name is Will. Will turned 5 this May and has been diagnosed for almost three years now. William arrived on Cinco De Mayo with great expectations from his sister who turned 18 months old that same day. He was a chubby faced, snuggly baby whose blond hair shone like a halo as he camped at my breast. He weighed 10 pounds, measured 22″ long and had 2 teeth. Yes, teeth!!! Our family was complete and now my husband and I were living the American Dream.  One girl and now a boy too!  Or so we thought until one cold day in December of 2006!!!

Will hit his milestones and was developing normally according to all the scales & the books.  He was a loving, social, happy boy and each time he smiled up into our faces we knew we were blessed. When he was 18 months old he got sick for the first time ever with an ear infection. It took two rounds of antibiotics to clear it up. When we went back to the Pediatrician they said let’s get him caught up on some of his shots since his ear is all clear.  I had been going slow with vaccinations for both kids since learning of other kids who were vaccination injured. I had told them I didn’t want an MMR until he was 3. It was on the front of his chart in RED!!!!!!!!!

Megan (our daughter) was running through the office after escaping from the exam room.  I was trying to catch her while the nurse and Pediatrician gave William an MMR shot because they had it in stock. At first, I was angry that they gave him the shot while I was chasing Megan around the office. Then I was furious!!!!!!!!!!!!

I remember hearing his cry from out in the waiting room & knowing in my gut that it wasn’t the same kind of distress cry. Moms need to listen to their instincts and not let other people make them feel silly for it. He screamed and cried all the way home and on and off for hours that whole night. When I called the Pediatrician she told me he needed some Tylenol and would be fine. The next day this other child was in William’s place and that child lost all of his words he’d already learned. I’ll never forget that day or the sinking feeling in the pit of my stomach when I lifted my angel out of his bed.

The realization that my angel was gone slowly sunk in as he didn’t turn to us with his chubby cheeked smile when we said his name or how he stopped running to the door to see who was there.  I still remember how lonely and afraid I felt crying softly in my bed some mornings while I heard him bouncing around but no longer attempting to awake his Sister as he had so many other mornings.  He had a blank stare when we took him out of his crib.  It was as if somebody had turned out his bright light. That same Pediatrician insisted William was just being eclipsed by his talkative older sister and I shouldn’t worry. Others insisted he was a late talker (he had already been talking) and countless others tried to ease my mommy guilt by reassuring me he was okay and his ears needed to be checked after that bad ear infection. I had his ears checked and they were fine.  Thank goodness for my mother, an RN who believes in mother’s intuition and our neighbor who is an Occupational Therapist; they encouraged me to follow my heart and “mommy gut”.

Will lost interest in many of the things he’d loved previously and didn’t seem to know how to play with his friends anymore. He was a boy that weighed 10 pounds at birth and always had a very healthy appetite until he was vaccination injured. He hardly eats anything now and can’t even have fun stuff like ice cream anymore because it makes his symptoms worse. We never, ever returned to that Pediatrician & some days I wish I could bump into her out in the store as people are telling me I’m a bad parent because my child is overwhelmed by all the noise & lights and not behaving appropriately in their opinions.

I went against that Pediatrician’s suggestions and called Early Intervention. I put William into a research study just in case so I could circumvent the 18 month-long waiting list at the Developmental Pediatrician. We got the diagnosis of Regressive Autism. That Developmental Pediatrician served me the blow of my lifetime when she told me my son had one of the worst cases of Regressive Autism she’d ever seen and so it began.

When you learn of the impending birth of a new baby as parents we all have such dreams for them.  A mom dreams of seeing that baby’s sweet face and hearing their sweet coos.  A dad dreams of games of catch, catching that first fish, building a tree house, fixing up a first car when he hears the words, “it’s a boy!”  Sports, trips, school activities, colleges, weddings and Grandchildren of your own that you dream of for that child you’ve yet to meet.  Then they lay that beautiful boy so full of promise in your arms you can almost feel the hopes of his future.  Suddenly when you hear Autism all of those dreams shatter all around you and it’s just you and your family left to pick up the pieces & figure out if any of its possible for them anymore.

For me, Autism translates into not knowing for sure if I’ll ever hear my beautiful Angel say his own full name or even I love you mommy.

Welcome Aboard….we’ve been expecting you!

“I can be changed by what happens to me. But I refuse to be reduced by it.” Maya Angelou

Parents of Autistic Children

http://www.poac.net/index.asp

http://illuminatedecorateandfascinate.blogspot.com/

Previous page