True Colors

No, that is not a dog yelping, a cat in heat, or an orangutan. It’s just my son.

Approximately 30-50% of children with autism do not develop speech skills to the extent required to communicate functionally. Echolalia, repetition of words spoken by others and palilalia, repetition of self-spoken words, are the most common speech disorders associated with autism, but some never develop any speech at all. It’s yet another mystery of ASD that, to my knowledge, no one has been able to pinpoint the cause of.   Is it due to the lack of desire to interact socially? Or is it caused by a deficiency in the oral motor skills that go into the formation of spoken words, similar to a verbal apraxia? If asked what I think the cause of my son’s inability to speak is, I’d say it’s probably the motor planning issue. No, maybe it’s the social issue. Or maybe it’s a cognitive issue. Or an auditory processing issue. Or maybe, just maybe, he’s a master wordsmith with the oratory skills of Abe Lincoln but keeps his ability under wraps lest we force him to say please and thank you and all that other stuff that goes along with being a member of polite society.  I’m kidding about this, though there are times I have seriously wondered. He is that clever a child despite his disabilities.

The point is I have no way of knowing the cause. And neither do his doctors or speech language pathologists. Does he demonstrate a DESIRE to communicate? Yes, in his use of sign and picture exchange communication. Do we, on rare occasions, hear some sounds cross his lips that COULD be words? Yes, particularly the words “no” when he’s mad and “mom” when he’s crying. But despite 8 years of speech therapy, he remains just about as non-verbal as non-verbal can be.

This does not mean, however, that he is a quiet child. Oh, no. And though it may come as a surprise to those of you that know me that I could produce such a vociferous kid (ok, ok, it won’t), he’s got a seriously powerful set of pipes. Often, when I’m picking him up from school, I can hear his low decibel, monotone humming long before I can see him, from clear across the other end of the hall. And that’s when he’s got his range in tight check.  Take him out of school, where he’s reminded daily to use his “quiet voice”, let him rip, and he might just top the highest falsetto of the Vienna Boys Choir. The sounds he makes can be soft, loud, patterned, random, soothing, shrill, low octave or high but they are always unusual. Sounds you don’t expect to come from a child. Someone once asked my husband at an outdoor event, in all seriousness, if he was making bird calls.

We do know that certain places seem to trigger certain sounds. The wine aisle at any grocery store is a very stressful place to be with him. He might not make a peep anywhere else in the store, but you put him in the middle of rows and rows of wine bottles and he’ll start hitting all the high notes. The conductive qualities of liquid filled glass are strong, and Colin seems to know it. Places that echo also get him going. He once let out such a loud whoop in the bathroom at Target that it caused a lady at the sink to jump nearly a foot and shriek.

“What is WRONG with that child?!” She yelled at me.

“He has autism--” I tried to explain, but she kept yelling.

“He’s rude! You need to control him! Why would he SHOUT like that?!”

I should have just apologized and left, but new to the whole business of handling peoples’ reactions to my son, and more than a little rattled by his outburst myself, I uncharitably shot back with, “I said he has autism. You’re shouting--what’s your excuse?!”

No, definitely not one of my finer moments.

Having coffee at Hyperion a few Sundays ago, Colin got excited and started getting loud. As our attempts to distract him with a massive peanut butter cookie (Hyperion has the BEST peanut butter cookies) weren’t working, and I was starting to stress, and Colin was continuing to squawk, a man came around the corner. He stopped short and looked at us. We, in turn, looked at him.

“Uh, I’m sorry.” He finally said, flustered. “My wife and I were sitting on the other side wondering what kind of dog was making that sound…”

My husband chuckled, which didn’t surprise me. He doesn’t have nearly the temper that I do. But rather than snap a sharp retort, I reminded myself of that long ago day in the Target bathroom and decided to laugh it off too. We did have the dog with us, after all.

“Our dog is a welsh corgi, but that sound would be coming from this guy.” I replied, pointing to Colin.

“Oh!” He seemed genuinely embarrassed, and more than a little puzzled, so I added, “He has autism and he’s pretty excited right now.”

It barely scratched the surface of potential reasons behind the racket he was making--it was sunny, it was warm, the corner was busy, the trucks were loud, daylight savings time, etc-- but sometimes it’s better to keep it brief.

I guess I could have taken offense to my son being, essentially, confused with a dog. By comparison, birds are much more flattering. But Colin is capable of making very strange noises—some that do sound like they belong in a zoo—so, really, how could I fault the guy?

Colin walked over to the man, looked up at him (something he rarely does to strangers) and gave him a huge grin. The man smiled back, knelt, took his hand and shook it warmly.

“You keep enjoying this sunshine with your family, my friend.” He said, then said good-bye to the rest of us and went back to his table.

He might have come around that corner with a bad question, but he left me with a really good notion.   Why let it ruin a gorgeous, warm, Sunday afternoon with my kids? So what if anyone wondered if a chihuahua--or even a chimpanzee--was hanging out at the coffee shop? Let them come and ask. For the moment, I was completely, contentedly, disarmed. I would not bite.

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Don't Blink

I’ve received a lot of calls, emails and texts since the news about Robbie Wood, Jr.’s disappearance broke on Sunday night. I suppose it’s a very natural connection for friends and family to make. When they hear something so alarming about a non-verbal, autistic, nine year-old, how can they help but think of us or wonder how a story like that affects me? It’s true that I can relate to the situation in Hanover on a more personal level than some of us can, but I am always affected by news like this regarding any child. Sad fact of the matter is, it’s a scary time to be any kid’s parent, autistic or not.

What I can’t shake is the timeliness of this incident in relation to a new phase Little Man has entered in his development. He’s gotten bigger, stronger and a whole lot more curious about the world around him. Cognitively, that’s a good thing. In terms of safety, it’s a land mine.

I’ve been pretty lucky; neither of my kids were ever runners. Sure, B would play the usual toddler and preschooler games to see how far he could get before we would chase him. The only truly heart attack-inducing moment he gave us was when he was two and decided to walk to his side of the car while we fussed with his infant brother’s car seat and stroller on the sidewalk. His side of the car was street side, and that’s where we found him after a second or two of panic, pressed flat against the door while cars whizzed down Princess Anne. And while Little Man has the tendency to wander if something catches his attention or if he feels distressed by the environment, as long as we're on top of him, he doesn't get very far. Immature coordination skills have heretofore kept his running skills in the area of up-tempo shuffling, making him pretty easy to catch.

Vigilance is the key when we’re in open areas, no doubt, and anyone who’s ever had a conversation with me outdoors in his presence knows not to take offense that I’ve only half heard what you’ve said and I’ll only partly remember the discussion after. I’m sure I’m the most annoying person in the world to talk to when my son’s around, but everyone's always very gracious about repeating themselves. Repeatedly. Sometimes they’re even so kind as to join me in retrieving him from wherever he’s wandered just so our disjointed conversation may continue. For the most part, however, his habits are predictable. And he's never showed much interest in putting himself into any territory he is unfamiliar with.

So there I was fooling myself into thinking this whole safety thing was manageable until a couple of Fridays ago when, after coming in from the bus stop, I set him up safe and secure in our autism proofed family room with his favorite movie so I could run upstairs and finally peel off the workout clothes I’d been in all day (I know, gross, but when it’s your job, you just kind of get used to the funk). The shower would still have to wait until my husband came home, but some fresh clothes were seriously in order. I’m up there maybe four minutes when I suddenly felt this intense urge to go down and check on him. I grabbed my robe from the hook and threw it on and that’s a very good thing because when I got to the bottom of the stairs, three things registered simultaneously in my mind: my dog was in the front yard, Little Man was not in the family room, and a gusty breeze was blowing in from the kitchen door that enters the garage.

Yes, you guessed it. In the blip I was upstairs, he had opened the door, popped the automatic garage door button and taken off. I tore out of the house with my heart pounding in time to see him shuffling his way up the middle of the street in the direction of the exit to our subdivision. Is that where he was headed? I still don’t know. All I know is I almost caused a cyclist to crash when I came flying into the street and a neighbor who was mowing his lawn stopped to look at me agape, but I had no time to worry about them. I pedaled my bare feet as fast as I could, shouting his name. He looked back once and kept going. He was only three, maybe four houses away but it might as well have been miles for all the fear I felt that he would get to the main street before I could catch him. The dog joined in the pursuit and thankfully stayed with us after I had caught and hustled him back to the house, clutching my robe closed with one hand. Unlike, our cat, the third escapee. She had no interest in the rescue and chose to boogie toward the other end of the street. Her retrieval was going to have to wait. Like, until I had put some clothes back on.

My point in sharing this alternately alarming, embarrassing and hilarious tale? That something like this can happen in a blink, no matter how careful/vigilant/neurotic we are. No matter how well we think we know our children. I share it because I am grateful the outcome of the mishap was a good one. I share it because It so easily could have been otherwise.

That evening, the childproof cap went back on the doorknob and the garage door opener was switched to the vacation lock mode. We are exploring putting deadbolts at the tops of the doors out of his reach, and perhaps an alarm system that will alert us each time a door is opened. And now, since the Robbie Wood, Jr. story broke, we’ll be getting him a Project Lifesaver bracelet. I was fortunate this time that he remained in my sight, but his gross motor skills are improving all the time. Someday, he will be able to run. I want that for him, but I’m kind of scared of it, too.

For information on the Project Lifesaver program for disabled children and adults, visit www.projectlifesaver.org

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Sibling Rivalry? Not quite.

Memorial Day weekend was spent catching up on all the house and yard work we'd been neglecting for months while I toiled day and night getting my Jazzercise center open and my poor husband was forced to pick up all my slack. We basically prioritized food, laundry and toilets and let the rest go to pot. But because all work and no play makes Stacy a dull girl, I was also determined to cram in a day at Lake Anna, so that meant the other two days were knock-down, drag-out work days.  Rich is still bitter. 

I'm not sure if it's because he's now 11, or more so because he's taller than me and nearly as broad shouldered as his father, but I've decided to quit babying my oldest when it comes to chores.  I mean, if I can push a mower and haul bags of mulch, he should be able to, right? Is that expecting too much? I don't know. I've never had a child his age before, but I am pretty certain I was doing some serious housework by his age, and I was certainly not his size.

Fortunately, he's pretty agreeable about it. Much more so than I was. Maybe he's more motivated by the online game subscription I allow him to maintain than I was of whatever allowance I was paid as a kid (hey, wait, did I even GET an allowance?!), or maybe he's just a whole lot less "spirited" than I was, but he typically goes along with whatever I ask.

One would think I'd just be happy about this and not try to overanalyze it. Ha! If only! Instead, each time I ask him to help, I feel this sharp stab of guilt for expecting so much more from him than his brother. I wonder, are chores something else B will resent his brother over? I know I resented my brothers. As the oldest of three and the only girl, I always felt that more was expected of me in the chores department.  In hindsight, I realize they were also required to do their part around the house. Maybe not in the same way, or, ahem, as much, but yes, they did some work, too. But even that division of labor, skewed or not, does not exist in our home. B will always be expected to do things for the sake of the household that Little Man, more than likely, will not.

Of all the tightropes I walk, this is the one I find most precarious: the balance between giving my neurotypical child a typical upbringing while expecting him to the rise to the challenges of having an a-typical sibling.  And while he might not be complaining about doing chores while Little Man gets off scot free, my gut tells me he's acutely aware of it. 

Don't get me wrong, B has thrown himself plenty of pity parties over his brother's disability, and I've let him. It's a tricky spot to be in, when you prescribe to the "it could always be worse" panacea that I get by on, to acknowledge emotions that you know are justified while a part of you is thinking, "Oh, just get over it!",  but I do give him opportunities to express himself.  I allow him to vent when his brother's behavior has embarrassed him, or that it upsets him when he can't play with his brother in the way his friends play with theirs. These feelings are entirely valid, and they wrench my heart, but at the same time, I feel compelled to remind him that it's never easy to be a brother or a sister; that sibling dissatisfaction is pretty standard and that, whether he wants to believe it or not, having a neurotypical sibling isn't always a picnic. When I share with him the way my brother and I, only about a year apart, alternately loved, hated, played and fought (i.e., beat each other to pulps) throughout most of our childhood--don't worry, Mike, all is forgiven...except for when you threw that D-cell battery at my nose-- I don't think he quite gets what I'm saying. How could he? He's never had a "normal" sibling, just as I've never had autistic one. And I find that, often, I cannot offer any solutions. The situation is what it is.  No, it's not fair, but it's not the most horrible thing a child could experience.  I can list so many great things about B that I know have been nurtured by his experiences with his brother, and all I can do is hope that he will see more of the pros than the cons.  I'm not sure I can point them out to him in a way he'd understand now, but hopefully he'll arrive at that conclusion on his own.  Perhaps in time, it will be his insight that gets me through a tough day (talk about pressure!) but for now, mowing the lawn and vacuuming will suffice.

**The disAbility Resource Center is running two workshops for siblings of children with disabilities on July 16th and September 17th with more dates to come. "Sibshops" are intended to be casual, day-camp style events so children who share this uniquely common bond can meet, interact, and share their experiences in a fun and supportive environment.  Information is available at www.cildrc.org, or by contacting Jenny Fain at 540-373-2559 or This email address is being protected from spambots. You need JavaScript enabled to view it. .

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Sometimes You Just Know

I'm going to go out on a limb here (pun only slightly intended): I have ESP.

There. I've said it. Laugh at me if you will, but I tell you it's true. What evidence do I have to support this claim? Well, lots. A lifetime's worth! But, sadly for me, and any chance I might have had of becoming a world-renowned psychic, I am so tuned-out of most of my premonitory moments, I have no idea they are happening until long after they have passed. So, before you flood my inbox with requests for lottery numbers, or to know how many children you are going to have, know this: I am the worst psychic ever. My ESP does me absolutely, positively, no good at all.

Take, for example, the morning I was drying my hair and out of the blue, the movie "Cujo" came to mind. It struck me so odd that I turned to my husband and said, "Remember the movie Cujo?"

"Yeah." He replied, "What about it?"

"It just popped into my head...the scene where Dee Wallace-Stone and the kid are trapped in the car with the dog circling."

"Stephen King's the bomb."

And that was the end of our discussion.

Now, did I think it was odd that I had a sudden recollection of a movie I hadn't seen in about 20 years? Yes. Did I think it meant that later on that day, I would find myself trapped in a car with my kids and a dog would be circling us? Um, NO! But had I just believed in my powers, I might have been more prepared when precisely this sort of thing occurred. I might have even been able to prevent it, although I don't think there's much I could have done to stop a giant rottie-shepard mix from following us into our kitchen when we returned home from errands that afternoon. I still have no idea where he'd come from. Maybe I wouldn't have left my purse hanging on its hook when I immediately scooped both my boys up and ran back into the car. Keys and a cell phone might have come in handy, foolish, foolish heroine! And I might have thought twice about getting out of the car to shoo him away when it all started to terrify my preschooler. What did that get me? Nose to nose with a massive, slobbering, potentially dangerous--though fortunately not rabid—dog.

Turns out, all the beast wanted was some love and a place to hang out until his owners came looking for him later. But, for a split second, when he put his paws on my shoulders and rose up on his hind legs to my full (albeit only 5'1") height, I was convinced my poor children were about to witness their mother's gruesome, Cujo-style, demise. Clearly, Dee Wallace-Stone had taught me nothing. Nor had my psychic powers...

Since that day, I swore I would doubt no more.

My husband, however, took much longer to come around. He thought I was just being my usual sarcastic self when I told him to believe in my powers. Or that I had finally gone completely insane. Either way, he found it hilarious. Until a few weeks ago, April 30th to be exact, when B decided he wanted to spend his last night of spring break in a tent in the yard with his dad and his brother. I was opposed because I was worried Little Man would somehow escape the confines of the tent. Our yard is fenced, and our guard corgi was going to be on duty, but still, the idea of him roaming the yard during the night unsupervised scared me. My husband told me I was being neurotic, that there was no way he could get out unless he managed to suddenly master the art of zipper-pulling (zippers are one of his occupational therapy goals-in-progress), to not deny him the pleasure of "camping" with his boys,  and that there was no way anyone would get out of the tent on his watch...

Insert "I told you so!" here.

You see, shortly after dawn, B decided he didn't like sleeping on the ground (he is my son, after all) and returned to his comfy bed. We can assume that he neglected to re-zip the tent, though details on this remain sketchy. It was fortunate I heard him come in and went downstairs to check on things, because guess what I found when I got to the kitchen? Yup: Little Man, with Monkey tucked firmly under his arm, peering into the kitchen from the other side of the patio door. And where was dear, old, dad? Sound asleep in the tent, of course. I needed no psychic abilities to tell me that; I could clearly see him sprawled out and snoring through the gaping portal by which my children had just vacated. On his watch.

"Ok, ok, you called it." He later admitted sheepishly. Yes, I sure did. Maybe not accurately, but close enough.

Women's Intuition or Cosmic Psychic Phenomena? I'll let you be the judge.  In the meantime, I'm using this as a platform against camping trips for the next ten years.

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An Open Letter to My Son on World Autism Awareness Day

Funny how this is the [fourth] World Autism Awareness Day and I've only become aware of the commemoration this year. I guess I've been spending too much time raising you to realize that there is an entire world movement happening right beneath our feet, opening the eyes of others to this strange, variable and mysterious condition. I remember hearing statistics when I was carrying you, about the rising number of autism cases, about the need for research, about the fear that vaccines were to blame, etc. Oh, I paid attention, my heart breaking for the parents and children who were forced to deal with, what I perceived to be, such an abnormal experience, but I could not have guessed that we would very soon be among them, that my journey as the parent of a child with autism had already begun.

And so what have I, from my unforeseen place on the frontline of this movement, learned since? What would I like others to know? I doubt I can summarize effectively, but I will try.

When I think back to the earliest days, those days you spent crying hour upon hour, disturbed by every little change in your environment, the wind, the lights, the noise, I was baffled. Your brother, only two years older, had been so different, so EASY compared to you. I remember holding you in the middle of one night, my crying as hysterical as yours. "What makes you so unhappy, baby?" I asked over and over. I realize now you were trying to answer, but I wasn't ready to listen. You had colic, I told everyone. You'd grow out of it. You'd catch up.

Yet soon enough the agonizing evaluations began, the countless habilitative therapy sessions, blood tests, genetics tests and MRIs, milestones missed, then reached, then stalled, then reclaimed. The search for that magic bullet, the CURE, and the hours of research, of sifting through conflicting studies, opinions and advice. Some things we've put behind us, and others we never shall, but there's an ebb and flow to it all that has become familiar. There are times I fear that tide might pull me under, moments where I think I just can't cope enough with you, do enough for you or predict enough of your future to do any of us any good. Then there are other times when my feet plant themselves back into the sand and I can breathe steadily again because you have done something to remind me you are an amazing person. I should not underestimate you. Ever. These experiences have brought us here, to a place where our life no longer feels abnormal.

Your autism is a challenge, I will not deny it. For you, for me and for your father and brother, too. But you are healthy and bright. You DID learn how to smile, then laugh, to walk, then run. You DID learn to enjoy being with other children and even more so, to feel affection for others outside your family: your grandparents, our neighbors and friends, your teachers. You learned how to have fun on a playground and in a swimming pool and not be afraid. And each and every day, you teach me and everyone who knows you something new about your world; you teach us what autism truly is. I often receive praise for being your advocate, but you, my silent little man, are fast becoming your own.

So, I suppose I have learned this: Autism is [Little Man] and [Little Man] is Autism. It has nothing to do with denial or acceptance, optimism or pessimism or even unconditional love. It is simply that I can no more separate autism from you, the child I gave birth to, than I could separate you from your brown eyes or your brown hair or that adorable freckle, that "chocolate chip", behind your ear. And that's ok. Would I take autism away from you if I could? If that's what you wanted, absolutely. But for your sake only, and no longer for mine.

Originally posted on Stacy's Facebook page April 1, 2010

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Chaos=Bliss?

The weather's been gorgeous here in Fredericksburg lately. Well, mostly gorgeous. As gorgeous as we can expect it to be in March considering that, last year at this time, we were still dealing with snow on the ground and in the forecasts.

We spend a lot of time downtown this time of year, before the scorching temps and high humidity find their way to our fair, little city. Having spent the first fifteen years of my life in NY, I crave any opportunity to walk rather than drive down a street, to herk and jerk my way into a hard-won parking spot rather than glide effortlessly into one of a thousand in a lot. It's not because I like a good challenge, even though anyone who knows me knows I thrive on them. It's because, growing up, there were no shiny, big box stores in the borough of Brooklyn. Our shopping trips meant trailing behind our mother up and down the avenue, stopping at each store for a specific item (butcher for meats and chicken, fruit stand for produce, fish monger for, well, fish and the salumeria for cold cuts and dairy), carrying the bags that didn't fit in and around our baby brother in the carriage, weaving our way through crowds, avoiding the bums and other unsavory looking street dwellers and plugging our ears every time a train roared above us on the "L"--the accepted abbreviation for "elevated train" (ie, not the subway). This was the standard for year round shopping, through rain, heat, snow and sleet. And, yes, I walked to school, too, albeit two blocks rather than two miles.

I am completely in my element in noise and crowds, but years of suburban living did do their best to soften me. Shortly after moving here nearly ten—wow, TEN!—years ago, we decided to spend a Sunday afternoon in town. At some point on the five minute drive in, B fell asleep. We were thrilled because, at the ripe old age of 15 months, he had already cut naps from his daily routine. I suggested that if we could get him into his stroller without waking him and find somewhere to sit outside to eat, we should take advantage of the opportunity. Sammy T's fit the bill perfectly.  Keep in mind that we were still new parents and we had just moved five hours from every person in the world that we knew.  Hence, we were NEVER without our son. So to be able to have a meal without him performing every toddler trick in the book to ruin the experience was an extremely rare thing. Our plan seemed fail-proof, until, at almost the moment our food was served, a fleet of hogs charged past (of the Harley Davidson ilk, not Porky the Pig) and woke him up. So much for a blissful, practically date-like meal.  The nerve of those bikers!  Didn't they know that my child was sleeping?  Didn't they know I hadn't had a kid-free meal in months??

This past Sunday, Old Town was nuts. People, cyclists and dogs everywhere. We were strolling along and decided to hit Sammy T's if any outdoor seats were available because, well I want to say because we had the dog with us, but in truth, it was more because we had Little Man with us. Dining out with him is a crapshoot; it could go either moderately well or really, really badly. Taking him to a restaurant requires a strategy, which I will briefly bullet point here:

· The place needs to be noisy, but no so noisy that it freaks him out.

· The place should offer booth seating so he is, hate to say it, trapped.

· The place should not only offer booth seating, but if at all possible, should offer a booth that does not back up to another booth. Even if it means we are at the last table in the farther-most corner of the joint, where no one else is seated and no server is assigned. This way, he will not toss his cup onto/ pull the hair of/bounce uncontrollably against the back of the person seated behind him. (On one ill-fated trip to the Green Turtle, he did all three to the same person.  Poor, poor woman.)

· The place must have electrical outlets for his portable DVD player in case we've forgotten to charge it enough to get through a meal.

· The outlets must also be located beside the appropriately positioned booth.

· The place must have French Fries.

Typical if you're the parent of a toddler, right? Except that when your child is not a toddler, other diners are even less tolerant of misbehavior. I will say that Little Man is getting a lot better at dining out. Through reinforcement, he can be made to remain seated, remain quiet and not toss objects over his head. Sometimes even without his DVD player. But we can't rely on it.

So, this time, when we planted ourselves at two tables at the corners of Caroline and Hanover, I was grateful for the happy buzz of early spring in the 'burg. Little Man was entertained by the constant stream of cars, he was allowed to stand up and bounce as long as he didn't step outside the cordoning, and with every passer-by either: a.)someone we knew who stopped to chat or b.) a dog owner who stopped so our pooches could sniff butts or c.) a person who'd never seen a corgi before and wanted to know all about the breed, there was enough noise to block out my son's monkey impersonation ( because, yes, Monkey was with us, too), and I was able to eat my vegan veg in relative peace, right down to the very last drop of chi-chi. Pure, chaotic, bliss.

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Cheers, Virginia!

A letter appeared in my mail box last week that I have been waiting to receive for a very long time. The purpose of this letter was to inform me, a person with a "past interest in legislation regarding autism", with an update on autism insurance reform at the state level.

I couldn't help but laugh when I read the above quote. A person with "a past interest in legislation" doesn't even begin to describe me. Had the letter read "a person with a teeth-gnashing, foot-stomping, fist-pumping passion for legislation regarding autism insurance reform", it might have been slightly more on track...

The letter went on to say that-FINALLY!-our House of Delegates and Senate have come together to throw their support behind HB 2467 and SB 1062, bills that would require public and private health insurance policies to cover early intervention services for ASD children ages 2-6.

That's when I cried.

Little Man is eight.  These bills, which I and many, many others have been harassing our state lawmakers to support for years, no longer bear any weight on my life. When our insurance company denied coverage of his habilitative treatments (speech therapy, occupational therapy and physical therapy), we were fortunately in a position to continue with his therapies by paying for them out of pocket. Now, I use the term "in a position" quite loosely because, in order to fund these therapies, we had to forgo vacations, new cars, home renovations and a sundry other little luxuries for the past five years. At least we had these options; my heart breaks for any parent who doesn't.

There were times we considered moving to a state where autism insurance reform was already in place. There were times we considered selling the house to support his treatments. There were times we had to scale back and couldn't provide him with as much as he needed. Those times continue to plague me: Did they forever impact his potential? Did those years when I could only afford to give him one hour of speech per week rather than the recommended two ruin his chances of ever acquiring verbal communication skills?

We did the best we could. We pushed for as many hours of services as he was eligible for at school and fought through a two-year battle with the Department of Medical Assistance Services to procure him Medicaid benefits, which now cover what our primary insurance won't.

So did I cry from relief for the thousands of parents and children who will benefit from the new law, or did I cry from regret that it came too late for my son? I wish I could say I am so noble that my reaction was for the greater good but, to be honest, the moment was far more bitter than sweet.

By all reports, the increase to health care subscribers as a result of the change will be minimal: less than $0.80 per member, per month. This will provide up to $35,000.00 a year in habilitative treatments for a child with autism. For those unfamiliar with the cost of these therapies, this may seem like an excessive amount. Sadly, it's not. But because we know, both by firsthand experience and through research and data, that these treatments DO work and that a child's symptoms and deficiencies (even those as extreme as my child's) CAN be minimized, the cost is worth it. Will it cure autism? No. But it will get these kids a lot farther than if left alone. Perhaps farther than any of us can imagine right now.

And that's where the sweet starts to nudge the bitter back into its corner, because even though this arrives too late for us, it's not too late for autism. My interest cannot and will not ever be a "past" one.

Well done, Virginia. I think we'll stay for a while.

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Awards Ceremony, Autism Style

Little Man received an award at school last week. As he doesn't receive them often, it's a big tadoo around here when he does. My husband and I are always curious to learn the creative ways his teachers manage to include him, a child who is pretty low on the measurable academic scale, at these gala events. When B receives awards, they concur with what we already know to be true: that he's met his AR goal, that he demonstrates good citizenship, that he's athletic, etc. With number two, the award is a complete mystery until the moment it's revealed. It's quite Oscars-like. I may arrive with my camera battery fully loaded (more on that later) but, unlike the other parents in attendance, I have positively no clue why I'm there.

In what other ways is it different? Well, for starters, my child does not scan the room expectantly when he enters the assembly, and though I take full notice of his entrance, I do nothing to catch his attention lest I throw his whole day out of whack. Little Man knows that when Mom's at school, something's up and fat chance he'll sit tight and wait to find out. He will insist on breaking out of line and coming to me because I am typically only there for one of three reasons:

1. He's got a speech, occupational or physical therapy appointment, in which case he gets to leave.

2. He's sick, in which case he gets to leave.

3. His class is having a party, in which case he gets to eat mass quantities of junk food which I ordinarily do not let him eat.

All three scenarios offer much more exciting potential than being made to sit through an hour long ceremony watching other kids walk up to the stage, shake a few hands, hold a certificate, smile, and then march back to their seats. Sure, it's exciting for the kids receiving the awards and their loved ones, but I can only imagine how tedious it must be for my son who, by nature of his disability, really could care less.

But the biggest difference in my experience at these ceremonies always comes at the moment his name is called and his teacher has to lead him up to the stage. He doesn't like being told to get up from his comfy seat to receive his award, I know it. I can almost hear his thoughts: Here I am doing what is expected of me even though I'm totally bored, sitting quietly at my teacher's side, minding my own business and now they're gonna make me walk all the way up those stairs and across that stage?!

At this point, I know what the award is for, I've heard its designation and his Principal's explanation for why he's earned it, but all I can really focus on is whether he's going to be able to get up there and receive it without incident. My breathe is baited, my hand shakes holding the camera, which, incidentally, is set to "unlimited sports-mode burst shooting" because I know that whatever is going to happen is going to happen at warp speed (hence the fully charged battery), and my legs twitch because I want to run up there and accept the award myself just so he doesn't have to.

I watch him walk slowly, reluctantly, up the stairs. I watch him stumble and grab onto his teacher's hand tighter. I hear the murmurs of the other parents who have suddenly realized this is no ordinary kid. I watch the Principal leave his podium and cross the stage to meet him half way—and only half way by virtue of my own edict that they refrain from being too easy on him—and I force myself to smile proudly.

And then it's over. The award is in his hand, or rather, his teacher's hand because he's tossed it to the floor, and she has turned him around to descend.

But, wait! Little Man has decided to put his own stamp on the occasion by plopping down onto the top step and jamming both his index fingers in his ears (his version of a silent protest) and the audience erupts with applause and laughter.

See that, Mom? Who could fail to be impressed by a kid with such innately comedic timing??

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Tooth Fairy-3, Little Man-???

How many teeth does a child lose on average between the ages of five and nine?  I should probably know this, but I don’t.  And though I could look it up, I’m not sure I want to.  Because if I know that number, than I will know exactly how many might be rattling around inside my son’s stomach and, well, sometimes ignorance is bliss. 

Since he lost his first tooth three years ago, only three of the gross, little, things are accounted for.  What became of the rest is a baffling mystery.  We search the house high and low for them each time we notice a new gap in his smile.  We shake out bed linens, search the floor and sift through toys.  But the only ones we have are those we’ve pulled from his mouth ourselves, the first three he lost.  Because back then, I actually thought he would choke on one if it popped out on its own and tumbled down his throat.  Silly me. 

He lost another one just this past week.  We noticed a little bit of bleeding one day while he was eating, checked it out and saw that one was loose.  We probably should have pulled it then and there, but when trying to yank the tooth of a child who has no interest in obliging your requests for him to remain still and keep his mouth wide open, it’s easy to justify putting it off.  By the next day, the tooth was gone and its whereabouts unkown.  Darn, I thought to myself, another visit from the tooth fairy thwarted.  Never really was a huge fan of that ritual until, thanks to Disney, I began to envision a tooth fairy in the form of Dwayne Johnson stopping by for occasional visits.  Then I was all over it.  Yes, even in tights and feathers, I dig The Rock, but, ahem, let me refocus...

While there’s not much I can do about all the teeth he might have swallowed already, I suppose I should check with his pediatrician or dentist to see if this is actually a problem.  Nothing like waiting until it’s almost a non-issue but, to my earlier point, I really don’t need anything else to worry about.  So with a dental check-up on the horizon, ok, FINE, I will force myself to ask the question.

The ADA currently recommends all children have their first dental exam by the age of one.  With Little Man, we were very, very, bad parents and put it off for several years longer than that.  Why?  Because taking a child with ASD to the dentist poses some unique challenges.  Even though we’ve been with a great family dentist for years, I was uncertain he would be a good fit for him.  After a discussion with him on the matter, during which our dentist agreed, I decided to ask other parents about their experiences with pediatric dentists in the area and made some calls.  We ultimately chose a practice that, on the surface, seemed an even poorer match than our original dentist. With a brightly painted waiting room buzzing with arcade game machines, tv’s everywhere and exam rooms wide open to one another, sensory overload seemed an overwhelmingly sure bet before the exam even began.  Yet the easy, understanding, and highly competent way in which the technician and dentist handled my son resulted in a surprisingly positive experience.  From the get-go, they reassured me that my son was not the first child to freak out over a dental exam, autistic or not, and they’d spent years developing strategies specifically for these uncooperative, mini patients.

Understood.  But what about an uncooperative, non-verbal, orally-fixated, touch-resistant, stranger-phobic, over-stimulation prone patient with the attention span of gnat???  Take that! 

Well, there are ways around that, too.  For example, if we thought any procedure, even a simple cleaning, was beyond the scope of what Little Man could handle, they would offer us the option of bringing in an anesthesiologist.  It’s drastic, and should only be used as a last resort option, but if the situation required it, at least we know it’s there.  Taking a set of x-rays seemed another massive pitfall to my son’s dental health, but the dentist has proposed that, until Little Man can better follow directions, they can instead take extra care inspecting his teeth for problems.  Already, we’ve been warned there’s a lot of crowding in that little mouth, thanks to an inherited combo of dad’s big teeth and my small orificial bone structure, which could necessitate a palate expander (I had one of those as kid, so can we just be frank and refer to it can as a medieval torture device for the roof of your mouth?), but for now, my greatest challenge lies in keeping him in the chair long enough for these preventative exams to happen.  It might require the ability to hold a figure-four leg lock for a solid half hour, and I must train for this semi-annual event with all the gusto of an Olympiad, but at least it’s a battle I can, and so far do, win.     

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I need a secretary. Or a wife.

I know how to be organized.  I am trying very hard to remind myself of that as I sit here staring at no less than three piles of mail, school papers and business papers sitting atop my desk.  Non-emergent, sure (or at least pretty sure), but things that do need to be sorted, read, filed or discarded. Beyond them are the Christmas cards that I still need to update my address book with and, oh yeah, some sympathy cards from November that I should probably break down and read.   And, as long as I don’t turn my head too far to the left, I can pretend the pile of out-dated periodicals I had the best intention of perusing doesn’t even exist.  My desk is a veritable wonderland of magical piles that manage to grow without any food or water.

“You are a very capable person, Stacy.”  I say to myself.   Then I add, “When you want to be.”   Clearly, with certain things, I am choosing NOT to be.

I hate clutter.  With a passion.  Particularly desk clutter.  For seven years, I was the paralegal that all other paralegals strove to be—at least in the office cleanliness department.  My desk drawer was organized down to tiniest paper clip, my files were always filed, my paper trays were always full, and my desk was clear, blissfully clear, of anything that did not pertain to the current project.  Each Friday, at 4:45, I’d begin my ritualistic decluttering, because the last thing I wanted to do after a fun-filled weekend was return to a messy desk.  A clean desk equals a clean mind, yes sir ree!

If my former co-workers could see how far I’ve fallen, they’d be having an absolute field day.

I don’t know when I lost the ability to care about the state of my home office.  I suppose at some point, in the midst of all the other chaos of raising a young family and running a business, I fell into the habit of putting out the biggest fires first and leaving the rest to smolder.   Whether that makes me a master  prioritizer or a master slacker, I’m just not sure.  I mean, I am usually pretty good at figuring out solutions, so why can’t I ever seem to find a solution for the perpetual paper avalanche I find myself buried under?  I guess, at this point in my life, it's not beyond my organizational ability, it's that I just don't care.  I've got much bigger fish to fry. 

For example, this week we will be adding physical therapy back into Little Man’s  agenda.  That will bring his total weekly therapy sessions up to three.  In order to make this happen, I had to first consider his therapy, specials and adaptive phys ed schedules at school. I then had to consider my schedule because I had already given up three of my favorite classes to teach due to his therapies and did not wish to give up more.  And then I had to consider which one of us had to be where, at what time and at what part of the Fredericksburg region on the days and times the therapy center offered me time slots.   Complicated enough, right?  Clearly not, because the time slot I was offered piggy-backed an already less-than-convenient time slot currently occupied by speech therapy.  When they offered me a 9 am slot for physical therapy as the only “practical” option, I took it, hung up and then promptly freaked out.  How in the world would I get my older one to school on time on those mornings when I would be stuck at therapy until 10 with the younger one? 

Ahh, but you see, it never fails that when one mother loses her ability to micro-manage, there is typically another mother standing by to swoop in and save the day.  As it was, a generous friend was already carting B to school on those mornings that I had to be at therapy 8-9 am. It wouldn’t be any trouble at all, she assured me when we devised this plan back in September, because her son’s therapy session would run from 8am-10am, and in between she had plenty of time to get her child, my child, plus our other friend’s two children (no I’m not joking) to their schools before returning to the therapy center to retrieve her oldest.  So that’s how we’ve happily carried on for  the last four months:  We meet at therapy, B jumps in her van (which, at this point, she might as well just paint bright yellow) and off she goes, dropping off all the children at their respective destinations before the school bells ring.  Ingenious, isn’t it?

But receiving that call, taking on that one additional appointment, had turned me from a multi-tasking maven into a babbling, non-sensical half-wit.  I called said friend and wailed, “I don’t know how to make this work!”

“What do you mean?”  She replied calmly,  “You now have two hours—plenty of time to drop [Little Man] off, get B to school, then drive back to pick [Little Man] up.  You won’t even need me anymore!   Which, coincidentally, is a good thing because I think our appointment schedule is about to change…”

Well, duh.  Of course it took someone else, someone else who is constantly on the go, someone else keeping far too many balls up in the air, someone else who must just accept that she will be wasting gas and precious time to drive one continuous 15 mile loop for two hours straight each week, to straighten me out.  I will miss our little routine now that it's about to change, particularly waiving to each other while passing on the four trips between South Stafford and Massaponax. 

So, is it that I’m less capable of being organized these days, or is that my brain reaches its threshold a whole lot quicker because I’m juggling a whole lot more?  Is there a tiny version of the robot from Lost in Space living inside my head that thrashes his arms and  cires, “Danger, Will Robinson, danger!” when I am approaching overload?  Do I subconsciously shut myself down to the lesser priorities for the sake of my sanity?  Who knows!  All I know is, I could probably go through these magical piles now that I’ve crossed “Blog for Fredericksburg Parent” off my to-do list for the night, but then again there’s this new episode of Jerseylicious on my DVR that could use my attention more right now…

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Thank you, Uncle Cheesie!

Yesterday, our friends celebrated their daughter's fourth birthday with a party at Chuck E. Cheese's—or "Uncle Cheesie's" as the guest of honor calls it—and I will admit, as much as I love our friends and adore their little girl, I was dreading it. A party on a Monday at 6pm is not in Little Man's repertoire. Not in the least. Adding to my stress over his inevitable meltdown on the drive over was his ten-year-old brother's sudden "too cool for school" attitude that had him convinced he was WAY too old for Chuck E. Cheese's. So somewhere along route 3, I decided that as soon as my husband arrived at the party, I was going to find a quiet corner at a neighboring restaurant and enjoy a peaceful dinner by myself while HE dealt with our pair of cranky offspring. Seemed entirely justified.

Wouldn't you know it? We had a ball. Even Little Man. Yes, it helped that ours was the only party in the place last night (Janean, you're brilliant!) and that aside from our group of merry makers, it was a pretty quiet night. And it helped that birthday girl's mom made just about the best strawberry vanilla Hello Kitty birthday cake with butter cream frosting we'd ever tasted. And it really, really, really helped that the men in attendance are very good at acting like children themselves, thereby proving to my bah-humbug tween that, wow, even grown-ups can have fun at Chuck E. Cheese's! I mean, really, how could he even question it when birthday girl's 6'2" be-goggled dad climbed into the not quite 6 feet tall ticket blaster chamber to catch the swirling whirlwind of prizes because she wouldn't? I think the adults were having even more fun with that than the kids...

Attending birthday parties in other children's homes has become pretty easy. Little Man can finally handle large groups of humans without crying, clinging or seeking out the fastest exits. He can now weather disruptions to his normal routine, provided there are certain constants present to comfort him: familiar people, familiar locations, a familiar meal that is served, etc. He has even learned to enjoy these events. But a party in an environment that includes loud, blinking, moving, machines, and giant, dancing, mice, and children running in all directions (ok, with our group, some of the adults were running, too) was far more than I felt I could expect a child with his level of sensory integration issues to tolerate. In fact, I got into the habit of avoiding them altogether. I regret that now, because I realize my reluctance to attend these parties had more to do with my hang-ups than his.

What I've learned to expect in these situations is that he will find the quietest corners he can--at Chuck E. Cheese's that would be the roped-off exit and the kitchen entrance--and go to them whenever the hullabaloo surrounding him becomes too much. I've learned to permit this. We accompany him, give him a few minutes and, when we feel it's time for him to try some more socializing, we lead him back into the chaos. If we're lucky, he'll show some interest in one of those noisy machines. He might allow us to sit him in the ride-on car and, if we're really lucky, remain seated long enough for the picture to be snapped. Last night, my husband offered him a skee ball and, while I threw my guard arms up and prayed for every skull and every plate glass window in the vicinity, he surprised me by tossing it in the RIGHT direction. It landed with a big thud only six inches up the track, but hey, it was a bona-fide attempt. I was very pleased. We still haven't gotten him inside the tunnels; he seems acutely averted to them. Whether this is due to his autism or some transference of maternal psychological trauma that lingers from the time I, at eight months pregnant, had to climb to the top of one to retrieve B and then wasn't quite sure I was going to be able to squeeze myself back down, I have no idea. Probably the autism, though the memory of the funk inside those claustrophobia-inducing tubes still gives me nightmares.

I wasn't always this chill, if you can ever really call my demeanor at such events chill. I used to fret that he would offend the hosts, because, after all, they'd spent money that his inability to play was wasting. I used to fear the other children would regret having him there because he wasn't fun, or that his behavior, unusual in the best circumstances, would seem even weirder. I used to rush his participation, force him to try something before he was ready and it always made his behavior worse. Now, I just try really hard to let him be what he is—autistic. Because, in spite of the indeterminate number of hurdles his autism forces him to overcome each and every time some occasion rocks his world, he has somehow developed the coping mechanisms that enable him to get through it. On his own. And, lo and behold, birthday parties, even at Uncle Cheesie's, are once again fun for us all.

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These are the times that try...

It’s IEP time at our house.  Not just any IEP time, but Triennial IEP time.  What does that mean?  It means that every third year of a special needs child’s education, an IEP (Individualized Education Plan) team will meet to discuss and determine eligibility and whether the child’s needs are still being met under the existing IEP.  Said team is comprised of the child’s parents, teachers, therapists and a number of other educators, administrators and diagnosticians the administrative designee (usually the Assistant Principal) feels can provide relevant input.

IEP time is not fun at our house.  Even less fun is IEP time of the triennial sort.

Now, without boring you with all the exhaustive details of our latest battle with the school (because that would be a major drag and/or you are unfortunate enough to be my friend or neighbor and have already been subjected to my rants) it does remind me of the need to espouse the absolute necessity that every special needs parent gameplan as fully as it is humanly possible before stepping into an IEP meeting.  Why?  Because, of all the things you’ll hear about your child in that meeting, good, bad, and indifferent, the one thing you will not hear (I'll lay money on it) is:  “Mom, you know best.” 

I hate to make the process sound negative and contentious.  It isn’t always.  I have had many productive and pleasant IEP meetings. I can’t emphasize enough that the people working with my son-- teachers, paraprofessionals, therapists and administrators alike--are some of the kindest, most dedicated, hardworking individuals I have ever met.  BUT, inevitably an impasse will be reached on some issue or another, and while the schools have everyone’s children to take care of, I have only my two.  Thus, the way I see it, no one else on that IEP team has more stamina, passion, love for or authority over him than I do.  No one else on that IEP team has spent countless hours working to understand him and his unique needs in order to determine what’s best for him like I have.  No one else on that IEP team has lost sleep worrying about him, fearing for him or trying to see into his indecipherable future.  

That is why at this upcoming meeting, as I have been forced to do in certain meetings past, I will probably reject any recommendation that does not concur with my own.  How can I not?  When the other team members have agonized in the ways I have,  when they have suffered the grey hair, the frown lines and the incessantly churning stomach that I suffer each and every time a decision must be made, perhaps then I would take their advice over what my instincts and reasoning tell me to be true.  I will smile and be courteous, because, one, they deserve no less and, two, just because I do not agree with a person does not make him my enemy, but I will not back down.  I can’t.  Because sometimes Mom does know best.

Do I ever doubt myself?  Yes, though, so far, I have not regretted any choice I’ve made regarding Little Man’s education.  Do I question my objectivity?  Sure, for how can a parent ever completely set aside the need to blindly protect their child?  But I do work hard to keep my emotions in check.  At least until I get back to my car…

So, as parents walking into an IEP meeting, how can we be more-certain-than-not we know what’s best?  We can educate ourselves on the issues and the options, weigh hope against reality, and walk into every meeting armed with as much support for our position as we can produce, whether it be outside evaluations from doctors, specialists and therapists, or examples of skills that your child has acquired but may not be able to demonstrate at school without the very accommodations you are seeking. 

The really daunting, and least desirable, part?  You have to know your legal rights.  Get to know them above and beyond the packet the Virginia Department of Education provides at each meeting.  Visit websites like www.wrightslaw.com.  Research books at the library.  The disAbility Resource Center (www.cildrc.org) downtown was a tremendous help in preparing for Little Man’s first IEP and Triennial, providing both information and an advocate to attend meetings with us if we felt it was necessary. 

Special education laws are complex. If you are struggling to understand them and how they relate to your child’s case, there are lawyers who specialize in the field.  While no one wants to think of these meetings as precursors to legal battles (our situations are already ripe enough with stress and expense) a simple consultation might provide the clarity needed to reach effective solutions, solutions that everyone--parent, school and child--can live with, sans the drama. 

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14 days to go

That’s it.  Two weeks. Subtract the two days before Christmas that the kids will be home on winter break and it's 12 days.  I have not purchased one single, solitary, present.  If another late December blizzard shuts the world down like last year, I will be in seriously deep doo-doo.

I have my excuses, oh yes.  Losing a parent and starting my own business justifiably dominated my November.  But the truth is, particularly for Little Man, I have no idea what to purchase.  As hard as it is to keep up with B’s ever-changing and growing list of wants and needs (he is officially restricted from making any further changes and/or additions as of today), having a child who does not nag, beg or whine for things is, believe it or not, the greater challenge.  It might make my day-to-day shopping excursions cheaper and easier, sure, but at Christmas, with not only myself in need of ideas but a bevy of grandparents, aunts, uncles and cousins calling, texting, emailing and Facebooking me for some, I get quite Grinchy and feel like bagging the whole thing.

I have this abyss beneath the floorboards of my family room that I will occasionally muster up the courage to enter.  I call it "The Land of Misbegotten Toys”.  I have a difficult time entering this place not because it is a mess, mind you—in the grand scheme of basement playrooms, it’s quite tidy—but because it makes me sick to my stomach to think of all the money gone to waste trying to find toys that would work for Little Man.  Of all the things I’ve had to accept over the eight years since I began this journey, this is the one aspect that has taken me the longest:  that the items that appeal to him and why they appeal to him and when they appeal to him are as much a part of his autism as his speech and learning delays.  What attracts him to certain toys and averts him from others is nearly impossible to predict or understand. 

At times, we’ve struck gold.  Like when he was 15 months old and we took the boys to Build-A-Bear to use gift cards they had received for Christmas.  We held each of the models out to him one by one and the only one he would even turn his head to look at was the monkey.  So we chose that one, dubbed him “Monkey” (because we’re creative like that), had him stuffed, certificated, handed it to him and the rest is history. Anyone who knows my son knows this monkey, or one of his duplicated descendants, intimately.  So what did our well-intentioned friends and relatives do when they caught wind of his love for this monkey?  They began purchasing him all things monkey.  Where did all those monkey-related toys end up?  Yes, The Land of Misbegotten Toys.

For many years, I was stuck in this expensive and wasteful pattern, thinking that if we tried enough kinds of toys, we’d find the key to unlocking the “Developmentally Appropriate Play” part of his brain.  My personal opinion?  That for a child like mine, it doesn’t exist.  Because no matter his age, his gross motor, fine motor or cognitive abilities, a child with autism will react to different stimuli in his or her own inexplicably unique way.   Now when I’m stuck for gift ideas each birthday and Christmas, I have found his teachers and habilitative therapists are my best resources.  Toys and teaching tools that he has been exposed to during work, play and therapy sessions have typically become hits at home, too, much to our—and his--pleasure.  Something as simple and inexpensive as a Slinky might just be the biggest hit under the tree for a child who seeks certain visual and tactile stimuli.  Like everything else, depending on your child’s functional and communicative level, it’ll just take a little more energy and creativity.

Talk to other parents and visit autism support websites.  Try to take note of the everyday objects your child shows interest in.  My son loves things that move in a predictable pattern, so this year a Zhu Zhu Pet hamster track will probably top my list (which I’d better get cracking on because according to reports, it’s one of the “it” toys of 2009).  Two years ago, for the same reason, we gave him a marble maze.  Little Man loves music and makes more use of the Nano he received last year than B does his.  He also throws, drops, loses, chews on, runs the battery dead and steps on it more than his brother does so this year Santa should probably bring him a protective case, lanyard and docking station…

Need more ideas?  Two good sources for fun, therapeutic and/or adaptive toys for special needs children are Abilitations Catalog (www.schoolspecialty.com) and TFH USA (www.specialneedstoys.com).

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The Perfect Holiday Photo? Ha! Forget about it!

I began my perfect photo odyssey like most new moms did back in the early 00's—with the quintessential department store photo coupon. Wow! A plethora of pictures of my perfect angel for only $7.99 and all I have to do is pick out a cute outfit! Then the day of the "shoot" (Who are we kidding? It's basically one shot, take it or leave it.) arrives and you realize how truly difficult taking pictures of children can be. Remember that scene with Rodney Dangerfield and the kid on the rocking horse from Easy Money? Yeah, it all makes sense now. Your angel becomes a demon, the photographer starts acting like Pennywise the Clown ("Beep, Beep, pretty baby, smile! They all FLOAT down here!"), and you become Joan Crawford. Even the cute outfits don't cooperate. They bunch in places they shouldn't, they slip and slide and tangle. Add a prop into the mix and you might as well just curl up into a fetal position in that little wicker basket you thought your child was actually going to sit still in...

Now try to have pictures taken with your autistic child. Your child that won't sit still, make eye contact or smile on cue. Ever. No matter the incentive, no matter his age, no matter how much you dance, sing, clap, beg, cajole, threaten and/or cry.

My one glimmer arrived when a friend started a photography business with her sister. I recall the day, shortly after I'd asked if they were willing to try taking shots of my boys, that she came running across the street to show me a print they'd done for a family where the brother and sister were seated (in their perfectly matched WHITE outfits) on a little, brick wall. Gazing lovingly from behind were the parents (equally perfectly matched in, again, WHITE outfits).

Did I mention they were in matching, WHITE, outfits?

I gasped. It was beautiful!

"Can we do this?" I asked, breathless with hope.

"Sure!" She replied.

Ahem. All I can say is, despite the best efforts of my friends and their mad skills, the closest we came to it was a shot of Little Man booking away from us across Kenmore Park with B in hot pursuit. And my husband and I? We are there, yes, far in the background and only because either he or I (not sure which) had the foresight to stop our own tailing of the kids and throw our arms around each other, seemingly casually, at precisely the moment one of the shutters was clicked. Thank you, Dumb Luck.

That said, it has become one of my favorite pictures ever. And from that morning at the canal path and the park, the sweetest shots are undeniably the candid: one taken of my husband walking up the hill toward the Mary Washington Monument with Little Man on his shoulder and B holding his hand, and another, of me whispering "The Itsy Bitsy Spider" into Little Man's ear while B was posing with his dad. I wonder if I would remember having that moment with him if one of the girls of Greenlaw's Photography hadn't caught it.

Couple of Christmases ago, Greenlaw's was brave enough to do our photo card for us once again. Looking at it, you would say it is just about as perfect a family photo as anyone can hope for, with everyone looking the same way and smiling. Truth? Little Man's little face was shopped. Totally. And not just from one other shot--from a multitude of other shots. They referred to it as "The Frankenstein Picture".

So there you have it. Want good holiday pictures? Hire photographers with supernatural shutter reflexes, a knack for capturing the moments and the patience to adapt to the whims, or behaviors, of their subjects. Oh, and wicked good Photoshop skills—DON'T FORGET THE PHOTOSHOP SKILLS!

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It’s not a family wedding until Little Man eats some roses…

There are edible flowers and there are inedible flowers. I know this because I have googled it.  There are roses that are grown specifically for the purpose of being eaten, and then there are roses that are grown to adorn arrangements, bouquets and boutonnieres, genetically engineered and chemically treated to be perfect examples of nature’s beauty. Little Man likes to eat that kind. He’s got great, if not holistic, taste.

Don't get me wrong!  I am a firm believer (if not a perfect practician) of the health benefits of an herbivorous diet, yet even I do not want my kids eating roses. But when you’re in the midst of a family wedding, with a hundred or so of your relatives talking to you, hugging you, and kissing you at once, and music is playing, and dancers are dancing, and maids are a-milking and all that jazz, you’re bound to miss something that your child is doing.

I have two younger brothers and the first time Little Man demonstrated his taste for roses was at the older one’s wedding. Both my boys were ring bearers in the bridal party, so by the time I had gotten them into tuxes, photographed and down the aisle, I was so mentally and physically drained, I left my husband in charge of Little Man so I could finally crash at enjoy the ceremony.

While two-year-old Little Man did not throw a fit, or cry, or run in the other direction when it was time to proceed up the aisle, all of which I’d feared, he did refuse to walk.  He stood at the end of the aisle with his stuffed monkey (also tuxedo-clad) dangling from his hand, staring wide-eyed at the guest in the last row as I, carrying the pillow, tried to nudge, then push, then drag him along.  Before the “cuteness” of this wore off, and the poor matron of honor bringing up the rear got totally PO'd, we gave up and carried him the rest of the way.  After all, though anyone who has ever been in a bridal procession may find it difficult to believe, even Pachelbel's Canon eventually comes to an end.  But I digress…

So as I sat up in front witnessing the nuptials, my husband took Little Man to the back of the room from where a quick escape could be made if it became necessary. Little did we know that our son would quickly discover a happy diversion--yes, precisely, the rose bud safety-pinned to his lapel! And what else should a toddler do with such a tempting item positioned conveniently near his mouth but eat it?

My husband, who typically handles these potentially disastrous situations (i.e. all social events) much better than I do, did not notice this at first because, taking advantage of Little Man's contentedness, he was busy recording the vows. Well, even the bride and groom agree that the best part of that video is when the camera pans from them to Little Man seated quietly on the floor in his penguin suit, munching away at a white rose. It’s straight out of an AFV (or as B continues to call it: America’s Funniest Home TOWN Videos) episode, and I still plan on submitting it and winning $10,000. Any day now.

Fast forward five years and we are now at my youngest brother’s wedding. Little Man has not attended a wedding since, but he is older and, with constant reinforcement, he has (along with his mother) learned that a massive social gathering is not such a scary thing. Not even an Italian-American New Jersey wedding. (I’m Italian-American and from New Jersey, so I can say that.) He knows that you should not make loud monkey sounds during the father-of-the-bride’s speech, even though he could not quite stop himself from doing so, and that you should not stick your hand into the bowl of hummus at the crudités station, even though he could not stop himself from stamping it with a perfect, little, hand print. As my gracious new sister-in-law remarked when the maitre d' was summoned to remove the offending bowl, “It’s ok, we’re all family, now!”

Did he remember eating a rose at Uncle Mike’s wedding years earlier? What child of that tender age would? And until he learns to speak and I can ask him, I guess we’ll never know for certain. Yet, when he came across some decorative rose petals strewn across the fruit sculptures that night, he popped a few petals right into his mouth. Sure, Aunt So-and-So can insist he thought they were apple slices until her face is as blue as her hair, but I suspect otherwise. Oh yes, I truly do.

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Tolet Cloged

One bright, sunny, day, I rise without the aid of a blaring alarm clock or a child demanding my attention. Astounding! My body has received enough hours of bona-fide sleep to have awoken on its own!! Even better? I had nowhere to be. No buses to meet. No classes to teach. No appointments to be late for…The birds are chirping and I can actually hear them!

I rise from bed to check on Little Man, who is still surprisingly asleep, and from downstairs, I hear his big brother tapping on the keyboard, already fighting some mystical online war with his fellow cyber-wizards. I remind myself that I really must establish some ground rules on computer and video game usage for the summer, but why spoil the moment with proactive parenting?  No, as I bounce down the steps, the only item on my agenda is to have a cup of coffee--a full cup!--and to drink it while still hot. So I head straight for the kitchen, feeling utterly content, until a bright orange piece of paper taped to our powder room door stops me dead in my tracks.

"Stop. Tolet Cloged."

That's pretty impressive for a ten-year-old boy, isn't it?  Possessing the kindness to post such a warning?  But B didn't stop there, oh no...  

I suppose he feared words alone would not adequately convey the true state of affairs because he felt compelled to also include an illustration of an unmistakably clogged toilet. And then, juuuust in case I would need the “sitch” made even more abundantly clear (because, let's not forget, I had yet to take that first sip of coffee), B further embellished the depiction with an exclamatory "Poop!" and a big arrow pointing toward a swirly blob at the center of the bowl. Who says chivalry is dead? Ha!

I investigate.  Wow.  Yeah.  The "tolet" was indeed "cloged".

Summer vacation. Day 4.

Oh well, what can you do? I've got kids, right? And kids poop. And even when they're not autistic and poop consistently in the toilet, they can still use too much TP and clog it. But what blows my mind is the almost freakish consistency with which I am confronted by this type of mess. If dealing with a fecal catastrophe of epic proportions was not a frequent event in my life, well, I just don't know what I'd do with all that extra time.  Not to mention the money I would save on antibacterial wipes! And if the Little Man, or the dog, or our aged, arthritic cat isn't stepping up to the plate, why shouldn’t my neuro-typical child be allowed a pinch-hit?

As anyone with a child on the spectrum knows, potty training is a long, slow process. At our house, it's been a four year nightmare project. My oldest was trained and out of diapers by the time Little Man came along at the age of two and a half. I know, that's young, and I probably pushed him harder than I should have, but after all, I was uber-mom back then. I had a goal to have only one child in diapers at a time and, as God was my witness, Child One would be potty trained before Child Two drew breath!

Has anyone seen that woman lately? Because I sure haven't. Now, before you condemn my housekeeping skills, please know that I am a neat freak and a borderline germaphobe. On a good day. On the kind of day that begins with a clogged toilet, however, I lock the bathroom door from the inside, close it firmly and go get that cup of coffee.

I mean, really, who cares about one dysfunctional toilet? Isn't that why we bought a house with two more?

Need a good resource for potty training your child with autism? Check out Toilet Training for Individuals with Autism & Related Disorders, A Comprehensive Guide for Parents & Teachers by Maria Wheeler, M.Ed. and Steps to Independence, Teaching Everyday Skills to Children with Special Needs by Bruce L. Baker and Alan J. Brightman with Jan B. Blacher, Stephen P. Hinshaw, Louis J. Heifetz and Diane M. Murphy.

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